Migraine Specialist’s Lights Brutal

In the month of December, I went to my doctor’s office once a week. These visits gave me the time to think about what really aggravates me about the office and to sort things through. The first three visits were not with my regular doctor, but the last one was with him.

I had wrong expectations around my doctor’s office from the beginning. I was under the impression that his office was like dying and going to Migraineur heaven. I heard the office lighting was very soothing, there was little noise and no smell triggers to set us off. Well, two out of three …, no I can’t even say it. The lighting in my specialist’s office is horrible!

I remember the first time I approached his office for a visit. The door has the sign pictured above – “Please Do Not wear Perfume or Cologne on the day of your appointment. Scents can trigger headaches in some patients.”

My first thought was - Wow, it really must be as great of an ‘office’ as I have heard; the long commute should be worth it not only because I was finally going to a true Migraine specialist, but they seem to take care of the whole you here.

Well, the office does not have anyone wearing perfumes and it is relatively very quiet, but that’s where it stopped. It’s worth repeating, the lighting in my specialist’s office is horrible!

The waiting room is full of exposed CFLs! There is not a darker area anywhere to be found. The examination rooms are probably bright enough to lead Santa’s sleigh on the foggiest Christmas Eve on record! I can definitely understand needing that type of light when performing procedures, giving oodles of shots and things like that, but for talking or before and after those procedures, I can’t think of a single reason why my Migraine specialist’s office needs to trigger a Migraine for me every visit.

I am embarrassed to say this, but I have taken comfort by sitting in the hall and only going into the waiting room at the last minute. However, I have found that there are scents in the hallway, but the lights in the rooms are much worse than the occasional passersby who have a bad scent.

I had mentioned this ironic discrepancy to some of the nurses throughout various visits, but they always gave excuses or said that’s the way my doctor wants his office. By the time I saw my specialist, I was already seeing spots and lines and wanted to get out of his office as quickly as possible. I would go through some of the things on my list and be glad to get out of the illumination nightmare as quickly as possible.

There was too much going on in my life during my summer visits with one of those visits being the worst visit I’ve ever had with a doctor (not because of him). Before this last visit with him, I realized I needed to go into his office with several different communication plans so I would definitely talk with him and only him about the lighting.

I found the plan that was appropriate for that visit. He defused me in a kind of lousy way, but at least I brought it up to him and will again during the next visit.

His first quick remark was that the lighting sucks. Then his off the cuff sarcastic comment was basically around funding. Really? I’m funding my visits to him every time I go there plus taking a day off of work. My two hour trip has easily turned into a three hour trip both ways plus parking is not cheap in this city either. My doctor is very good and works very hard, but I also get charged for every little thing I request.

His next statement was that they may be moving their offices to a different location in the hospital. If or when that happens, the lighting will be taken care of and be much better. But what about now?

I will talk more about the lighting during my next visit. I am half contemplating bringing in boxes of incandescent bulbs for the waiting room too. Honestly, I don’t get the hypocrisy between these Migraine triggers.

How is the lighting in your Migraine Specialist’s office? Is it dreamy like it should be or nightmarish like my doctor’s office lighting? How would you handle this ludicrous situation if it were your doctor?

Batty Doctor Appointment

Have you ever had one of those doctor visits? I’m not talking about an appointment where your doctor was horrible and had no clue about Migraines, I’m trying to talk about an appointment like my last doctor’s visit where I can’t blame my doctor for putting all over my chart “patient is confused”. Ugh.

There was way too much going on this summer both at home and work where I became very overwhelmed, didn’t get much sleep and had to take on many more responsibilities than I was ready to tackle. Of course as these Migraine triggers and exasperating factors were building, my first Botox treatment was wearing off.

I had things under enough control that I was able to decrease one of my other preventatives a little since I could no longer tolerate the cognitive side effects I was experiencing. My doctor appointment for my next Botox treatment was postponed and I thought I could manage everything until my next visit, but I would need to try to hold tight as best I could with everything going on at home and work.

Waiting for appointment day ended up being like a kid waiting for Christmas to come where it seemed like it would never get here. Appointment eve is when all of the fun really began!

First of all, I normally have the paperwork ready for my doctor the weekend before my visit. It didn’t work out that way this time. I even had a lot going on the night before my appointment and couldn’t even complete it then.

It was already dark outside and my doggie needed to go out. After letting her back in, I noticed there was something flying and dodging around the house. Can you believe there was a bat inside?!?!

Luckily, my son was around. He grabbed the fishing net from the garage; he used to play lacrosse. After a few gentle tries, he was finally able to catch the bat in the net. To further keep from hurting the delicate bat, he tenderly cradled the bat (this is a lacrosse term where you like rock the net back and forth to keep the ball inside of the net; he did this ever so gingerly) until he got out on the deck and was able to set the bat free. I’m so glad he was home and that he can be so agile!

After this ordeal, I was too tired to put the rest of my paperwork together and opted to finish in the morning. As I was getting ready to leave, I realized my tires needed more air. This was just one more thing in a line of items that needed to be completed last minute before leaving for my appointment.

My drive is usually like clockwork; I can count on it taking two hours to get there. This trip was no exception to how my summer was going where it took much longer to get there than it ever had. By the time I pulled into my parking spot, I was tired and fell asleep.

My luck was still on my side! I quickly realized that my headlights were still on. I’m sure you guessed it, my car battery was dead. Not only did it make funny electrical noises when I turned on the key, but it somehow managed to keep making these same noises after I turned the key off and even after I pulled the key out of the keyhole. I didn’t have any wiggle time left and had to leave to go to my doctor’s office. Can I say ugh again?

I was also a little more apprehensive with this visit because due to the appointment postponement, my FMLA had expired the day before, yes, the day before this new appointment date. I would have been all set with my original date and my FMLA. Luckily, my company has a grace period where I can still get my medical recertification form in after the expiration date, but I really don’t like operating things that closely.

The nurse’s portion of my visit was unremarkable, but every time I have gone, I seem to get a different nurse with a different routine. I am still trying to get used to that.

I will reluctantly admit that I barely remember the doctor’s portion of my visit. I basically wanted my shots and to get out of there which is totally against my character. I do remember him asking me to do something that just seemed totally absurd to me and quite frankly, it still does.

I can still see his face by my reaction and can only imagine what my face must have looked like. He even repeated himself which only reinstated the ridiculous statement to me which I still don’t understand even being in a much clearer state of mind.

Given where I was back then, I didn’t question him, but he did change his course of action after he repeated himself and I’m positive that his notes say, once again, “patient is confused”. We will have a talk about this during my next visit. He has written that statement before when I increased my medication too quickly, but I wasn’t confused this time, just tired and I couldn’t ask the question I needed to clarify his request. He’ll get a few questions next time.

This is a big reason why if you can have someone go with you to an appointment, to be an advocate for you, you should have someone else with you. Yes, I had things written down and my paperwork with me, but I wanted to get in and out of there. Again, this is totally not like me, but if I had someone with me to advocate for me, they would not have let me take this easy way out and they would have known me well enough to know why I had the dumbfounded (not confused) look on my face when the doctor gave me his silly directions.

I gave myself a pass on this last appointment, but I can assure you that during my next appointment, my doctor’s notes will not say “patient is confused”. I started writing notes and revising my plan of action right after my last visit and keep typing little notes and comments as the date comes closer. I will be ready and even if his horribly bright office lights start to confuse me, I will have a plan B for that too. I have a top notch doctor who can’t help me unless I give him the information he needs. Enough.

What was your strangest appointment like?  I'm sure there are a lot of stories out there; even leading up to your appointment. 

Botox Bantering

It’s been almost two weeks since I had my first Botox treatments. The experience has been very different than I expected.

The office visit was unremarkable. It was actually a very quick visit and probably one of the fastest I’ve had in a very long time. We knew if the Botox was approved that this would be the course of action I would receive this appointment.

The needles were very small. Throughout the Botox shots, the doctor and I bantered nonsense back and forth. I even told him that this bantering was supposed to keep my mind off of the process he was doing. He chuckled. To me, the shots were nothing especially since when I was younger, I was stung by more bees at one time than the number of shots of Botox I got.

The first side effect I had went away pretty quickly. My front teeth and the tip of my tongue went a little numb. That never returned after the first day. I have been getting more ice pick headaches; I really haven't had any in a very long time before this treatment.

The biggest side effect I’ve gotten is neck and shoulder pain. I felt like my neck ran a marathon. I don’t think it had to do with the actual shots as my forehead and the sides of my head didn’t bother me like this at all. Typically your neck will receive about ten different shots and the shoulders will get about six; three on each side. The injected muscles are supposed to no longer contract or spasm which is one of the ways Botox is supposed to work.

My neck was fine for the first couple of days, but after that, the muscles were like they were sore from not being used in a while; kind of like your muscles feel at the beginning a sports season when you first start working out again. I don’t know if it was different muscles taking over for the ones that no longer contract, but that’s what it felt like to me.

The other weird sensation I had is that I my forehead felt like it was "after" sunburn. What I mean by that is it didn’t hurt like sunburn, but like after you have sunburn, your skin feels kind of funny and feels like it moves funky too. It kind of feels like it’s not really your skin, but it is. I hope that makes sense. I'm just glad my eyebrows still move! :^) The sore neck and "after" sunburn forehead feelings have mostly gone away.

It’s still a little early to tell how it's going to effect my Migraines and it’s only the first round of Botox. I want to remain optimistic that it will help. I really hope so.

More to come…

Migraine Awareness Month #11: Say What

Migraine Awareness Month #11: "Say What?!" What's the most ridiculous thing ever said to you about Migraines, who said it, and under what circumstances?


There are so many different comments we’ve all heard, but I’ve decided to go the doctor route on this one. It was this doctor’s way of trying to push me into retrying a medication for the THIRD time - on my first and last visit with him.

Instead of saying anything of any intelligence to me after hearing my hesitation about retrying a medication, the doctor said “You can keep doing what you're doing or retry this medication.” Say what?!

First of all, if I wanted to “keep doing what I was doing,” I would have stayed with my last incompetent doctor and not sought him out.

Second of all, if the medication didn’t work the first two times at the exact same dosage, why would it work now with no other changes?

Third of all, at that point in my Migraine treatment, I had only tried a couple of different medications; not even enough to count on one full hand. Why in pray tell would he be going back to a medication that has already failed not once, but twice before.

Really?!



National Migraine Awareness Month is initiated by National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Approval Process

It’s time for me to jump onto the band wagon. This has meant I’ve needed to switch my reading around a little bit. Although I still need to catch up on my blog readings and want to finish up on the book everyone is talking about (the book that is turning everyone different shades of red), I’ve had to start doing all of my serious researching on Botox.

I have been approved and should receive my first treatments during my next doctor visit in about a week. I like to know exactly what to expect so I’m trying to read up on patient experiences, what to expect in the office, what to expect after leaving the office and even read through some of the interviews my doctor did while he was conducting research on Botox.

My doctor had mentioned Botox during my first two appointments, but I kind of dismissed it as I was not ready to try it yet.  However, before I went back to him for my third appointment, I knew there would be no choices and this would be the route we would be pursuing. I really was not in good shape during that visit as my speech was horrible because of the latest medication increases which made me even more frustrated than normal.

As he started filling out the Botox application form, I was getting out the medications I had tried and failed at in each of the five classes my insurance company listed even though they only required me failing three classes of medications. I guess it was team work by my doctor and me without us even talking about it.

I have to say that I think our Migraine community is awesome! I was hesitant about starting Botox with this office for a number of reasons. With Botox seeming like the ‘drug of choice’, I had heard that the girl in my doctor’s office was very overwhelmed and difficult to get in touch with even though they ask us to touch basis with her. I had also heard that she NEVER gets back to you.

My reluctance to go with Botox was because I would not want to depend on a preventative if it may not be available when I needed it and because it can wear off before the next set of injections. I know what it’s like when I have titrated off of a medication that doesn’t work all that well and it’s not that much fun.

Before I went to that last doctor’s appointment, I reached out to someone in our Migraine community who also goes to my headache center and has gone through the Botox process. She gave me some wonderful helpful hints! She made me feel more comfortable about moving forward with Botox as I knew that would be the route I would be taking after my third appointment with my doctor.

First of all, I have to say, I respect when someone tells me like it is. My Migraine friend came out and told me that the process is as bad as it sounds with ‘Botox girl’ at our headache center. But she also reassured me that it was well worth it for her and that I should go through all of it to see if it works for me too. She said the first authorization would be the hardest and once insurance approves it once, then it shouldn’t be much of a problem. She advised me to call my insurance company to set up a case with them; to take control myself.

I know we both work hard at our normal jobs. We shouldn’t need to follow up or do a big part of Botox girl’s job. It should be like any other prescription medication we have, but it is a little different and we do want to make sure that everything goes through especially since we usually hear that insurance companies can hassle us a little more about getting this approval even though my doctor’s office typically sends through people for approval that over qualify for Botox.

When I called my insurance company, they were excellent! They set up the case and even told me they had my doctor’s phone number, fax number and everything else if they needed anything. They took my basic information and I tried to keep giving them more information – the same info I gave my doctor at the appointment, but they kept assuring me that they needed and would get that from the doctor’s office. I thought I would try to give them as much information as I could to make it easier on everyone.

I called Botox girl and left a voicemail with the case number and all of my information. After a very respectable amount of time, I did the same again. I have never heard back from Botox girl. I was warned by my Migraine friend to NEVER expect a call back from Botox girl. Unfortunately, my friend did not let me down. I have to tell you, my boss would not be happy with me if I gave this type of service to our clients.

I felt kind of silly, but I ended up calling my insurance company back to see if Botox girl had ever called in and where everything stood with my case number. Quite frankly, I felt like I was getting desperate enough that I was ready to postpone my doctor’s appointment. I know I am better off than I was medication wise before my last appointment even though my Migraines have not improved, but I did not want to waste my doctor’s or my time if my next option wasn’t going to be available.

Apparently Botox girl did get the Botox ball rolling, but she should call to give patients an update. If I could not get good information from my insurance company and if it was too late for approval (they require ten days), I would have changed my appointment and raised a bigger stink than I will now during my appointment.

My Migraine friend has since given me a few more helpful hints. She let me know that her first round did nothing for her Migraines, but her second round was like magic. She also mentioned that one of her side effects was that she has started to get carded again when she buys a beer at the bar. I’m not too concerned about that side effect especially considering my oldest son is only ten years younger than she is, but it would be nice to reduce my Migraines as I feel like I’m at my wits end right now and don’t know how much longer my boss can be as super as he has been.

I have a week to do more research (I’m a real detail person) on Botox and really prepare for my doctor’s visit. Maybe I’ll also find some time to continue reading the book that everyone’s been talking about and of course I have a lot of work to still catch up on.

Do you have any helpful hints or stories about Botox that will help me get ready?

Fried Migraine Brain

"Why didn't you listen to me?" How would you like to hear that from your Migraine specialist?

Yes, I knew better. Yes, I didn’t think I had increased my medication too quickly until afterward. Yes, in my first visit my specialist stressed “slower is better, slower is better".

During my first appointment, he increased my dosage three fold and I managed that just fine. For my second visit, he doubled my dosage so I thought I could handle it again with no problem.

Mathematically, I already had more medication in my system so proportionately, the stepped up increased would be much less. The one element I didn’t factor in was the human component. Silly me, I’m not a machine.

Yes, my doctor said slower is better and I read all of the time about how much safer it is to take it slower. I definitely understand more now and I never even reached the increase to the full dosage – I stopped after the second increase.

This year has been one of the toughest years that I have experienced. My Migraines seem to be getting the better of me. Work has been more difficult because of them too. I am extremely fortunate that my boss has been very patient with me up to this point and I am always very concerned that his patience could run out at any time. I don’t know that I would have made it through some of my rough patches if I had been reporting to someone else.

This is a big reason why I was so anxious for my preventatives to start working and why I made my big mistake and increased it a little too quickly. My symptoms from increasing too fast were definitely counterproductive to working effectively. Some of these symptoms were I would forget things too quickly, I could not type, I could not think and I sounded like I would keep tripping over my words at times.

Before my last doctors visit, I decided I would step out on a limb. I was running out of new ideas and tired of feeling like I was complaining all of the time. I decided I needed to bring a testimonial with me to my doctor’s appointment of what I can be like.

If you think about it, this can be a very difficult question to ask your boss, but also an equally hard question for them to answer and give you a frank answer. I first told my boss that I was going to ask him a question, but it was perfectly ok if he didn’t want to answer it – yes, a little awkward for both of us. I asked him if he could ask my doctor a question, what would it be.

He didn’t hesitate. He basically said that on certain days I seem to have a more difficult time assembling thoughts than other days, but he also knows that I am going through some medication changes. He said he also notices when I am not a hundred percent. Nothing he said surprised me as I know he has been noticing my difficulties which I have to add can increase my frustrations. It’s tough to actually hear him say the words, but I know he said this to me as something to tell my doctor because he wants to help me. I really do appreciate everything he has done to support me during this challenging time.

As it turned out, while I was at my doctor’s visit, I had a Migraine and because his lights are very bright, my speech was probably the worst it had been in a long time and I hadn’t even increased my dosage in over a month. He could definitely hear my speech issues and see my frustration.

He decided to decrease the dosage back to where it had been before the last set of increases and only titrate back up when I am completely asymptomatic. He is also putting in for approval for Botox and I hope I was able to recuperate some from my prior bumbling with him.

He had mentioned Botox since my first visit with him although neither one of us was really ready to go there at that point. Somehow, with this appointment, we both knew this would be it. He just started filling out the application to go to my insurance company. I had done some pre-work and had already listed the different meds I have tried in the different classes.

In order to cover Botox, my insurance requires more than 14 days per month with headaches lasting 4 hours a day or longer and you have to have tried and failed trials of at least 3 classes of Migraine prophylaxis medications of at least 2 months in duration for each medication. I fit that criterion for the 5 different classes that my insurance company listed. Anyway, by giving him a medication in each class, hopefully I was able to redeem some of my credibility from the boneheaded move I did.

If I get approved for Botox, I hope to not need to increase my preventatives further and maybe even eventually decrease some of them. It’s been a few weeks since my last appointment and I haven’t re-increased the dosage yet. I’m not really sure when I’ll be ready to do that although I still want to get rid of these Migraines.

I am ready to be done with this, but I know I have to be patient too. Slower is better...

Have you done any idiotic moves because you wanted to hurry up and scoot your monster away too?

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Migraine Doctor Journey

No matter how challenging a doctor visit had been, I like to look at each of my doctors along my journey as a growing and learning experience. As I started to learn more about Migraines, it got easier to move on to new doctors; until my last doctor.

When I went to my first doctor, I was still very much trained by my mom; doctors knew everything! You know, they took an oath and could cure almost anything. They would listen to everything we said and use their years’ worth of schooling and experiences to give us the best treatment.

Before I even made an appointment with my first neurologist, I tried to cram the basics I thought I was supposed to know and do before I went. I was kind of surprised that she never even looked at the diary I had kept or anything else I brought to that first appointment as I even delayed going to the doctor so I could have enough data for her to look through, but I guessed she knew what she was doing because after all, she was a doctor and had a specialty in neurology. Me, I had never even searched for anything on the internet before I realized that my lifelong headaches could really be more than just daily headaches.

I have to tell you, it took a while to get used to the fact that I could finish a prescription and not be healed! Anyway, I thought my first prescription was helping, but my doctor wanted to change it at our first six week follow up visit, so it was changed. We tried different prescriptions along the way and even retried others. On some occasions, we actually attempted combinations of medications.

At the point where I read and learned more about needing to give a medication enough time to really take effect; I was on a prescription I probably should have come off of at that time. However, I followed doctor’s orders and ended up increasing the dosage. By my next visit, I practically had to beg her to come off of the med as my tremors were so bad I had to drink with two hands. She reluctantly switched me to another medication. This time, I was put on an anti-anxiety medication.

After giving it a try, it was hard to convince her that that the anti-anxiety med did nothing for my Migraines and that they were actually feeling much worse. I knew I couldn’t keep going on with taking this medication, but I think she just wanted to get rid of me so she actually changed my prescription again.

This was the point that I started to learn that mom is not always right and I can actually fire a doctor! If you think about it, I’m paying this doctor for a service and I didn’t exactly feel I was getting the proper care I was paying for. I understand it may take a while to find the right medication to help with Migraines, but she didn’t seem to be listening to me, working with me or what was really important to me, she didn’t seem to believe things I would tell her and I felt like she was fighting against me; she was not working with me. I was going to have to find another doctor. Doctors don’t know everything, they don’t always look at what you bring with you to your appointment, and they don’t know all things medical even if you want them to or if they’re a specialist in that field.

Since I’m usually a planner, I didn’t leave right away and still tried to figure out ways to help my Migraines. I never planned on staying on medications forever and had started reading more about the elimination diet. I mentioned it during my next doctor’s visit when I was basically told it would be a waste of my time. Being the hardheaded person I am and having learned all of these doctor lessons already, I decided I would do it anyway!

The elimination diet turned out to be one of the best things I have done for my Migraines as it had decreased them dramatically. I charted everything when I started the elimination diet and it showed all of these differences very clearly and succinctly.

I brought this paperwork with me during my last visit with this doctor. She actually looked at it. She also got up and sat right next to me on my side of her desk as I went through my charts. This is when she told me that she thought my Migraines were totally because of stress which instantly explained why she didn’t want to take me off of the anti-anxiety med despite what I said. It really was the most pleasant visit I had with her and not because it was my last.

It was way past the time I should have moved on, but I learned so many things that I won’t regret the time I spent spinning my wheels either. I will never tolerate another doctor like her. They were tough lessons for hardheaded me that I really needed to learn firsthand.

It was so easy to fire the next neurologist. I only saw him once. He was so pompous and knew me much better than I knew myself. Just ask him! He knew that my trying a medication for the third time would be a charm for my Migraines. He actually told me that I ‘could keep doing what I was doing or retry that medication’. Silly me, I thought I was doing something different by going to see him. Can you believe he told me that I kept too much detail in my Migraine diary? I wish I kept that much detail now. Also during our appointment, he was so good about putting down things I had already tried to help with my Migraines, but really offered nothing new except retrying the old medication that did not help; even for this third time.

I ended up going to some odds and ends doctors for a little while including a primary care doctor. I learned a huge lesson with this PCP. He really is a good doctor who knows his own limitations. Although I try to stay out of medications, I think I talked him into trying a medication combination despite him not being comfortable with mixing meds. I knew I was beyond this doctor’s limits when I started having different side effects and could tell he didn’t know where to go with me. I ended up moving onto my last neurologist from there.

It was almost funny as my last neurologist took one look at the medication combination I was on when I came in for my first visit. She listed the possible side effects of the combination at the same time I was going through the same side effects I was feeling. I was amazed that she could look at the meds and describe all of my side effects. I stayed with this last neurologist the longest and probably would have started with her sooner if her name wasn’t so hard to spell as I had heard good things about her for a long time, but just couldn’t locate her.

She was by far the best doctor I had seen for my Migraines and helped to bring me from chronic Migraines to borderline chronic. This doctor always partnered with me and usually went along with so many of the crazy things or ideas I wanted try. She worked with me in figuring out my companies FMLA policies which was not an easy task. It turns out that my company needs specific wording from the doctor whenever the recertification paperwork is submitted.

From the very beginning, she would always look at the paperwork I brought with me during my visits, she would write out prescriptions in funny ways so it would save me hundreds of dollars with my insurance company, she kept me on one of my prescriptions that wasn’t helping with my Migraines, but was providing some relief with another genetic condition I have and you can really start to see the different ways she would work with me.

Sure, there were some things she would do that would frustrate me, but I’m sure I would frustrate her in our partnership too. We had a really good rapport, but I also didn’t want to make the mistake by pushing her to do something she was not comfortable with like I felt I did with my previous doctor. Although she never said it, sometimes I felt like she was running out of ideas near the end of our partnership and didn’t always know what to do with me. I really liked the way we worked together, but my Migraines started increasing again just before she dropped my insurance.

That was the final push for me to move on to a true Migraine specialist who is only two hours from my home. I know I am going to miss the rapport I had with her and hope I can build a portion of this type of relationship with my new doctor. My old doctor was great in giving me everything I needed to get ready for the Migraine specialist and I have recommended her for those I know who need a local Migraine doctor.

So far, I’ve had one appointment with my new doctor. He seems to want to partner with me and to bring his years of Migraine research and expertise to the table so we can make the choice together about what we feel is the best path to take for my treatment. There are more rules and regulations around a big office that I need to get used to, not that I’m ever going to like it, but I have the confidence in the doctor that we will move in the right direction and start to see an improvement soon enough.

This has been my Migraine doctor journey with some of the lessons I have learned along the way. I wish mom was right and every doctor could cure every condition. Wouldn’t that be nice?

Insurance Fiasco

One of the things my new Migraine specialist ordered for me after my first visit was biofeedback. I have to confess that this is something I have not looked very much into until after my appointment.

With only six short weeks until the second visit with my doctor, I didn't have much time to figure out a lot of stuff around biofeedback. Coincidentally, while I was sitting in the waiting room during my first appointment, I had the opportunity to review the post Teri Robert had just submitted on her First Migraine Specialist Visit - 10 Things to Do or Not Do. What better timing could you have than that?

Included in this article were ten things from Teri's new Migraine specialist that he would like us to do or not do on our first visit. Some of the things that her Migraine specialist mentioned were to:

• Be open to ideas that may take you off guard. I know there is good evidence that certain types of therapy can help to actually reduce Migraine. 
• Remember that getting you better requires a team effort. I’m going to give you advice, possibly prescribe medication or other treatments, but you have to do the work. If I ask you to keep calendars, stop caffeine, and take a daily preventive medicine, and you return without doing the first two, don’t blame me for the third not working.

These were actually two big reasons I needed to pursue this biofeedback option - whatever it was. After doing some preliminary searches on what it was, how many sessions would be needed or how much a session would approximately cost, I needed to find out if insurance would cover it. Because of my go around with the dietitian stuff, insurance and my benefits department a couple of weeks back, I decided I would go right to the insurance company this time to see if biofeedback was covered.

Please keep in mind that the following all transpired the same week (mostly the day after) as my specialist appointment. This meant this was a week that I was severely lacking in sleep and was not thinking as clearing as I would have liked to, but I only had six weeks to get moving on this part of the order from my doctor. When I went to the doctor, I was away from home for sixteen hours that day which is way too long for me especially since that includes four hours of driving; two hours each way.

Anyway, I called the insurance company and spoke to Insurance Agent 1 (IA1). I'd say we had a very pleasant conversation, but I think you'd see right through that as IA1 seemed to want to get off of the phone with me at every chance she could. Our conversation went something like this (not verbatim):

MP: Is biofeedback (BF) covered by my insurance policy or would it be covered by our wellness program?
IA1: No, it's not part of the wellness program. (wants to hang up)
MP: I have an Rx for it.
IA1: It would be a behavioral benefit. It's probably not covered by your plan. It's very limited. (wants to hang up)
MP: How would I know if it's covered or not.
IA1: You or your doctor could go to the IC (insurance company) website and search on it. (wants to hang up)
MP: (thinking hahaha my doctor would never!) I'm on the website now and logged into my account. ..... looking for a search bar ..... I don't see a search bar.
IA1: You have to go to the main page of the IC website to search on it. (wants to hang up)
MP: I'm on the main page now and I see the search bar. ???
IA1: Search on CPB. (wants to hang up)
MP: (didn't ask what CPB stood for - didn't really matter as we had a good dialog going at this point!) Ok, I have the results.
IA1: Just look through that and you'll find your answer. (wants to hang up)
MP: Through all 11 pages of search results?
IA1: There is another search bar on that page where you can search on BF. (finally aware that I won't hangup.) I'll log in to look at it..... There it is, if you choose the first item, you should be all set. The first entry will have the covered criterion, but it's probably not covered. (wants to hang up)
MP: If I see my condition (never told her what my condition was) in the top bullets under the section that the IC considers BF medically necessary, does that mean it's covered?
IA1: Yes, but as a behavior benefit. (wants to hang up)
MP: Is that any different than a medical benefit?
IA1: Not really, but you would have to pay your large co-payment.
MP: Ok. (hung up as I had a conference call I had to go on and I didn't trust anything IA1 was telling me from near the beginning of our conversation although I did gather a lot of useful information anyway.)

Great, now what do I do? Ultimately I did get the answer I wanted - that it was covered, but I was not confident in it at all. I did what anyone who was not happy with an answer they receive from a customer service rep does. I waited a few hours and called back again!

This time, I started my conversation a little more intelligently, or so I thought. Our conversation went something like this (again, not verbatim): 

MP: I've looked through the Clinical Policy Bulletin (that's what the CPB stood for, it was on the documentation) and it says some plans exclude coverage of BF. I want to check my plan to see if it is covered. My condition is listed under the section that the IC considers medically necessary.

IA2: (looks through plan) It says it's excluded in a separate provision.

MP: That's where I'm confused. I talked to IA1 earlier and she said it would be covered because it was in the top bulletted items and all I would need to do is pay my huge co-payment.

IA2: They probably didn't look at your plan. (that's an understatement!) It's in a separate provision where it says BF is excluded. I'm sorry if she didn't look at your policy.

MP: I'm not sure if she checked my policy. Thank you for your time. (still don't get the warm and fuzzies!)

So now I've called the IC twice and gotten two different answers. Didn't really like the answer I received from either person; they just seemed a little off, a little quick and conflicting. What should I do now? Where should I go?

I still remember what happened the last time I called my company's benefit department so I figured I would check our company portal. There was some information there. The best part was where the documentation specifically listed BF as one of the different procedures and treatments which would require pre-certification from my IC. To any logical person, this would be an indication that it is covered at least in some circumstances. With this little tidbit of information and conflicting answers, I decided I would call my benefits department before going anywhere else.

Unfortunately, I received exactly the information I expected from them even after bringing up the little bit about the pre-certification. I was basically told that they don't have any information on our plans and that I would have to call my IC. Really? Oh well, here goes nothing. In some ways, I think it was better that I was tired beyond my thinking ability and I was just reacting on remote control. I'm glad I didn't go the other way and start blowing my top.

Alrighty then, I decided I would be up front on the third call to the IC. The conversation went something like this (again, not verbatim):

MP: I don't know if my plan covers something. I've called the IC twice already and received two different answers. The documentation from the portal on my company lists it under procedures and treatments as requiring pre-certification. I have an Rx from my doctor for it. I'm looking to see if BF is covered by my plan. I'm sure you can see my confusion. (that was a mouthful!)

IA3: (reviews plan) We show it's excluded in your plan, but you say it's in your documentation. Can you hold please?

IA3: I'm still looking through your plan. Hold on a little longer please.

IA3: As I look through it, it looks like bio-energetic therapy is excluded, but I need to look further, please hold.

IA3: I'm checking with the rep that deals directly with your company, please hold.
IA3:  Are you looking at the 2012 documentation?
MP:  Yes, it says it's effective 1/1/2012.
IA3:  Please hold.

IA3: Are you sure it's the 2012 documentation? Is the documentation you're looking at a summary document or the plan booklet?

MP: The document says it's effective 1/1/2012.  It looks like it's a summary. That's the only document that was out on our portal.

IA3: Good, only the summary document is available right now; the plan booklet hasn't been printed yet. Please hold.

IA3: The information we have is that it is excluded.

MP: Can I get that in writing?

IA3: Sure, we'll email it to you.

Once again, things still didn't sit right me, but I wasn't going to argue with IA3. She's obviously a puppet in her organization like the other two were. After some conversations with different people in my company, I ended up contacting a director in our corporate benefits area. He said BF was covered and that I should probably get it pre-certified. I also found a section of exclusions in the benefit summary documentation. No where in the exclusion section did it mention BF was excluded, although it did mention that bio-energetic therapy was specifically excluded which is definitely not the same thing.

I've never had anything where I needed to get it pre-certified. So what did I end up doing again? Plus the last thing I have from the IC is that BF is not covered. I called the IC again!

I tried to be as prepared as I could be for this phone call. I had all of the documentation I could think of ready with me. The conversation went something like this (again, not verbatim):

MP: I've talked to a few IC agents and received a few different answers. Although I've been told by the IC that BF is excluded by our plan in a separate provision, the director of benefits in my corporate office said that it is covered, but I might need to get a pre-certification before I get that treatment. How would I go about getting a pre-certification?

IA4: I will need the diagnosis code and the procedure code.

Back and Forth: Gave her my Migraine diagnosis code and only had a general office visit procedural code.

IA4: I'm not showing that you are going to need a pre-certification, but you're going to have to get the BF code from the person that will be doing the BF so we can make sure it is a combination of coding that is covered.

Although IA4 seemed to be the most competent IA of them all, I still have to confess that I am not one hundred percent confident in this answer either. I've made four phone calls to the IC and received two answers that BF is covered and two that it is not covered with a little twist to each answer received. 

As you can see, I am taking very seriously trying to do what my new doctor wants me to try as Teri outlined in her post. If he feels it is beneficial, I have to give it a good try, but I know I have to be careful about not getting all stressed out around all of the BF sessions I would need either.

I'm still curious as to how this is all going to work out and I have my first biofeedback appointment this week.

Have you used biofeedback? What was your experience like? Did you find it helpful? What did you learn from it?

First Specialist Appointment; Almost Confused about Diet

I finally had my appointment with my first real Migraine specialist this week. It was a different adventure than any other doctor appointment I have been to from the beginning which started with scheduling to go there in the first place. With a two hour drive to get to my new doctor, I left extremely early in the morning so I could avoid a lot of the rush hour traffic and review everything I needed so it was fresh in my mind before my scheduled time.

I've done a lot of reading and research about the Migraine specialist and headache center I went to visit; some of the materials were a little older, but most of the information gave me a good picture of what to expect for this day. I knew I would be seeing a psychologist, a nurse and my specialist. Overall, I had a really nice experience for my first visit.

I was disappointed right after walking into the office. I was anticipating a nice soothing waiting area which would be any Migraineurs dream. I couldn't believe there were the small tubular compact fluorescent bulbs all over the waiting room with no place to escape from them. I was later told that the lighting was a hospital standard. Really? Ugh.

After I got checked in, I was handed three different tests. One test had three hundred thirty-eight true/false questions to help keep me busy while in the waiting room in between the visits I had with the various people I needed to see. As I started filling out the tests, I had to put on my hat and really didn't understand why no one else in the room had sunglasses or a hat on their heads. Not that it mattered, but I didn't think I would be the only one in this office with something to help shield these lights when it was full of Migraineurs where the lighting was terrible. 

The first person I saw was the psychologist. Her office lights were awesome and what I expected of the waiting room. I even took off my hat while talking with her. She had reviewed the fourteen page packet I completed before checking into the office and she asked me some questions around my headaches to get a bigger picture than just answering paper questions could give her and she asked other questions around my life in general. I had to put my hat back on before going back to the waiting room. 

I still wasn't done with all of the tests I needed to complete when the nurse called me back. This time, I kept my hat on as the lights in this exam room were worse than the waiting room. The nurse took my vital signs and asked me a lot of clarifying questions around the packet I brought in with me. The nurse knew more about headaches and Migraines than most of the doctors I had been to prior to coming to the headache center. I also found out that I would be weighed every time I come in for a follow up visit. Yuck, I've been gaining a lot of weight lately.

I finally finished the packet of tests before my doctor called me back from the waiting area. As he greeted me, he met me with a big smile and a firm hand shake. The lights in his exam room were the worst of all of the rooms. My new doctor was busy, but very pleasant. 

We talked about a lot of different areas and he even helped force a partnership between us which is just what I wanted. One example is that he had given me two medication paths we could go down and he wouldn't make the decision of which way to go; I had to make that final choice. We ended up tripling the dose of a medication I was already taking as he said my preventatives were at way too low of a dose. He also prescribed biofeedback and an EKG for me.

By the time I went to the headache center, my Migraines had officially gone chronic. One thing I found weird about coming here is that everyone seemed to believe what I told them and I know I have a Migraine past full of large black holes. I never felt like they doubted me and they actually say I get more headaches than I will admit to having. By the time I was nearing the end of asking my doctor my questions, I actually started answering them along with him using his words. Basically, I am to do nothing until we get my Migraines under better control. He said it's hard to try to do anything if you are having head pain almost everyday. 

Of course I asked him about the elimination diet anyway. I have gone through the elimination diet and found it to be successful and very helpful for me. Honestly, I don't think I would be where I am today if I had not gone through the elimination diet before and I did it during another chronic period of time. Most of my previous doctors have had negative opinions about the elimination diet and I wanted to find out my new doctor's position on it as well. To my surprise, he shook his head no and basically said it was a waste of time. 

I have to tell you I really started to get confused about this answer. I've heard of other doctors at this center who have had their patients go on the elimination diet even though they had been on it multiple times before and had never found any foods that trigger them. I know foods affect me and that I am missing something in my diet now. 

What could he mean about not believing in the elimination diet? This really was not something I expected to hear from him and totally confused me.

All he would tell me was that I needed to get my Migraines under control and to follow a few things: take my preventatives, get the EKG, do biofeedback, get enough sleep, don't have MSG, don't get drunk, don't be hungry and exercise. He kept repeating all of this and said "first get the preventative to work and then worry about the other things." He told me, "don't worry about food. If you think it will trigger, then it will. Too much time is wasted on food." 

I thought more about being on the right preventative, the right level and food as a trigger. I know food triggers me. I know I like to be an ostrich at times where I tried not to worry about foods only to find that it ended up triggering a Migraine again. But, if I was on the right preventative and at the right level, I shouldn't trigger so easily, right? 

I think that's what he was trying to tell me which does make sense. I believe that is what a preventative is supposed to do - prevent Migraines from occurring. To make us less sensitive to our triggers. However, that still won't cure us and we still need to take our preventatives, get enough sleep, avoid MSG, don't get drunk, don't be hungry and exercise. I guess I have learned his spiel 'good enough' and can't wait until I can get my Migraines under better control.

I would still think that somewhere along the lines we would have to watch and/or find the 'super' trigger foods that we will always have to avoid like many of us have to do with MSG and alcohol. I guess I can view this like some people don't have Migraines until a couple of things will trigger them like weather or hormones or only certain foods. I would love to be able to have some of the foods I try to avoid now since my preventatives are not working right yet. I can't wait until my preventatives start working and I can start leading a more 'normal' life. I hope it also helps with my light sensitivity.

Does that make sense to you about the elimination diet? I don't think I'm ready to give up on the elimination diet as a whole, but I think I'm ready to hold off and find the preventative that works first.

Family Follow Up

After I sent out emails to family and friends about signing the on-line petition, it was real interesting to see who signed the petition right away, who procrastinated and who never did anything. I don’t really ask for much for myself from them as I will do what I need to do, but I fight more for my nieces, nephews and others who struggle and are trying to find their way through Migraineland.

I sent my emails out to some core family/friends and then forwarded that on to my sons and niece who are now old enough to vote, two of which are Migraineurs, while explaining a little bit more about what the petition is all about. By Thanksgiving, I only had one person, one of the younger members of the family, who had signed the petition.

This gave me a lot to talk about during Thanksgiving, but it was trickier to do because there were unique triggers in the different rooms, but at least the lights weren’t too bad this year. The funny part was that I ended up, don’t laugh, sitting in one of the chairs in the nice dark quiet hallway which actually brought people to me and led perfectly into the conversation.

Most people recalled getting the email, had wanted to act upon it and vowed to do something when they got back home. One brother signed it right then and went on to do something I hadn’t done to that point even though I should have known better - I am just not good at taking the subtle (or even not so subtle) hints lately. He posted it to his Facebook. I followed his example after I got home.

It feels so rewarding to help others sign up for something like this especially since they are affected by Migraine disease too – whether directly, through a child, parent, sibling, friend, any of those combinations or any other way. They do want to help, but we must help get the word out so those that want to help know how they can help. It was also fulfilling to see other friends sign the petition from the Facebook posts.

I know everyone didn’t sign (yet), but there were people who NEVER sign anything who went out there and even put in comments on the petition. To date, two thirds of the ‘kids’ I sent the email to signed the petition and the one who didn’t, is in basic training so I’ll give her a pass. In addition to signatories that came from the Facebook posts, I have had a little over a seventy percent response - so far.

It always upsets me when I see another ‘Migraine Specialist’ give up on a patient because they’ve tried every medication or when a Migraineur is labeled as a Drug Seeker because doctors don’t know enough about Migraines and think we would rather be treated with narcotics than abort our Migraine.

We need more education, which means more funding, around Migraines. We need Congressional hearings to be held before the Primary Health and Aging Subcommittee of the Senate HELP Committee and/or before the Health Subcommittee of the House Energy & Commerce Committee – prior to the close of the 112th Congress.

It’s not too late to sign the petition or add it to your Facebook if you haven’t done so yet. It’s not too late to help spread the word. We Migraineurs definitely need your help with this too.

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Two Peas for Thanksgiving

This Thanksgiving is going to be at my sister's house. When they've had parties there in the past, my brother-in-law has been very accommodating where he went around and changed out his icky CFL bulbs for the better incandescent lights.

This year won't be any different, but I can't say that I'm very excited around the reasoning for it either. My sister,Pam, has been living in my shoes for the past month and a half after experiencing a mild traumatic brain injury (MTBI). She has been very photo and phonophobic, very dizzy, can't get the right words out and has been experiencing one-sided headaches sometime throughout everyday along with having much neck pain.

Pam can never do anything the easy or normal way; I guess that runs in the family. Her big troubles started after she was in a car accident and was actually hit by the same drunk lady twice. Her brain was jolted around pretty good from the accident which definitely started these issues for her.

She actually continued onto work after the accident, but she didn't last on the floor very long. The other nurses took one look at her and immediately sent her down to the ER. Pam has been out of work ever since.

Pam is getting more concerned about work. She needed to stop there the other day to drop off some papers and as soon as she stepped off of the elevator, she was hit by those devilish fluorescent lights. She felt them like spears going through her head and when she spent a little time with her boss, they had to turn the lights out. Pam is a labor and deliver nurse just like Jessica at Painfully Speaking was. After much deliberation, Jessica recently resigned from being an L&D nurse; a job she truly loved just like Pam does.

I've been trying to give Pam a little information at a time about MTBI. Nancy Bonk at MyMigraineConnection has written a few good pieces about it including New Imaging Identifies Mild Traumatic Brain Injury or Teen Sports Concussions Can Cause Serious Damage which says:

"A concussion or traumatic brain injury (TBI) takes places when the brain encounters significant movement to the head or a penetrating injury with or without the loss of consciousness. This "jarring" or penetrating motion can occur when the skull is struck, bumped or hit during a fall, motor vehicle accident or sports injury. During this action, the brain hits the opposite side of the skull from where the hit occurs - forcing the brain in the opposite direction - where it is accelerating. Then the brain bounces back or decelerates. This is called an acceleration-deceleration injury."

Just before the accident, Pam started learning more about Migraines as she suspects her 8 year old son has Migraines. Although we have always talked about Migraines, either mine or someone else she knew, since her accident, she is asking different questions and understanding a lot more then before. She has had a few Migraines in the past, but never the same symptoms she is experiencing or with the same intensity as now.

Pam's doctor wants her to see a neurologist now. She was given several neurologists names by different people and she asked me to research some of them for her. I'm glad she did as I have a lot of experience with this and was able to weed out some of the sleep specialists that were on her list and other neurologists they just didn't seem like they would be someone I would want her going to see. We settled on one that we are both comfortable with and she'll actually go to see him the week after Thanksgiving.

I will be going to her house the day before Thanksgiving to help her prepare the house for about 35 people this year. It should be fun and a great site to see the two of us cleaning and arranging everything in the dark - just the way we want it! We'll be like two peas in a dark pod for Thanksgiving.

I hope you all have a Happy, healthy and pain free Thanksgiving so you can enjoy your day.

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One Last College Try

Near the end of the appointment with my neurologist when I found out she was no longer going to accept my insurance, she asked me if I wanted to come in one last time before she dropped my insurance. Knowing where I really wanted to go next and knowing how long wait times have been in the past to get a first appointment there, I took her up on her offer.

I was pleasantly surprised to get an appointment with my new neurologist relatively quickly and kept going back and forth as to whether or not I wanted to keep my last visit with my current doctor. Needing much information and a prescription from her to see my new doctor, I finally decided I would still go.

I had this last appointment with her this week. I'm glad I chose to keep it as we were able to tie up a few things and I was able to talk to her about everything I need for my new neurologist. I will be going to a true Migraine specialist who is a real pioneer in the field.

I added something different to give to her for our last appointment. I gave her a cumulative graph of all of the time we spent together. There were a couple of areas on this chart I thought were very interesting so I circled a peak and a couple of valleys that I wanted to talk to her about. As I handed her the graph, I explained what the graph represented and that I wanted to talk about the areas I circled while offering her to ask me about anything else on the graph. There were areas she liked on the chart and other areas she didn't. Then I questioned her on the circled areas.

The first valley came rather abruptly; that's a good thing since it was a big, extreme dip in my Migraines. I attributed the difference here to a switch from the generic Topiramate to the brand Topamax. There was a clear, unmistakable difference between the generic and brand for me.

The peak came after this Topamax valley. Topamax was breaking my budget as my insurance company expected me to pay over ninety percent of the cost for the prescription so I needed to try something else. Titrating off of Topamax helped my Migraines skyrocket. I commented to my doctor on how I could see how well preventatives really do work for me as they did come back down a little after I started titrating on my new medication.

The last valley I circled was when I started my last elimination diet. I strongly believe in the elimination diet while my doctor believes the best way to find food triggers is to discover them. This valley was significant enough where I really can't ignore the results and she could clearly see the difference too. I told her that I know I am missing something and believe the only way I'm going to find it is to go on the elimination diet again. I let her know that the only reason I stopped the diet at that point was because my thyroid levels came back on the high side which I know was making me feel very off. She nodded her head in agreement to everything I said, but I don't know that it will really change how she feels about the elimination diet even though my chart clearly showed the diet made a difference. It also showed me that I definitely have to go through the diet again.

As we were getting ready to conclude our relationship, I couldn't stop myself from giving her one more college try around one of my pet peeves. I turned to her and said, "before I leave, I have a challenge for you."

As had become the norm, she had no idea what to expect from me next and put on her quizzical face. I continued that she constantly told me that stress was one of her biggest triggers for her Migraines and that I did not believe stress was a trigger. As I was saying I thought it was an exasperating factor, she said it at the same time that I did, using the same terminology and with a little roll of the eyes but also not dismissing what I was saying either.

I challenged her that the next time she is under stress, to look at other possible triggers going on around her. I asked her the following questions in rapid succession: Does she drink enough water? Is she getting enough sleep or an uninterrupted sleep? Is she eating well? Is she clenching her teeth?

Her first response was that she probably does not drink enough water and asked me not to look at the chocolate milk sitting next to her. She agreed that she doesn't always get enough or a good sleep. She admitted that she doesn't always eat breakfast and that many times during rounds, she will grab crackers from the nurses stations instead of eating a real meal. As she was going through her answers, she knew she wasn't taking care of herself the way she should and could probably see the disapproving smirk on my face. She tried to recover by saying "we don't always practice what we preach" while pseudo smiling.

I followed up by saying if we can become aware of some of our avoidable triggers during our stressful times, that maybe we could elude the Migraine altogether or at the least, it wouldn't be as bad. I also admitted that I try to be more diligent during my stressful times and know it's not always easy, but it's usually worth the efforts. She said, "you're right, water and meals are big for me".

I won't know if this talk again will really make a difference, but my goal is that this is something that will help her and is passed on to her patients so they can try to reduce the number of Migraines they get especially during those stressful times when we don't really need another Migraine. I had to give it this one last good college try before leaving her office for the final time. I hope it will help this time.

We talked a little about where I will be going next. She is real happy with the doctor I will be seeing and has even heard him speak. She also could not believe how quickly I got an appointment with him either. She was very helpful in making sure I have everything I need for my first appointment and I even had her sign another iFMLA form so it will cover a full day doctor's visit with my new doctor. I am currently only approved for partial day doctor visits so this should extend my coverage to a full day.

During our different talks throughout the visit, she mentioned a few times how she would like me to follow up with her on a couple of things. At the end, I told her I would be happy to as long as she gave me her email address. She didn't even hesitate to give me her personal email address, but she did give me a trusting look that I know I shouldn't and never would break.

Now I have to get prepared for my next, new doctor's visit which will last all day and not only because it is a much longer drive, but their first appointment is about a five hour very comprehensive visit. This will be a very long day especially for a Tuesday visit which is sandwiched between two workdays and during our busiest time of the year when we're not even supposed to take any days off. My boss didn't have any problem with me taking this day.

I am starting to look forward to my new doctor. I know I won't have the same relationship I had with my now 'old' neurologist, but I'm also looking to start really reducing my Migraines once and for all. And now I will begin a new doctor chapter in my Migraine life...

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Migraine Conference

I went to the National Headache Foundation (NHF) conference in the Big Apple yesterday. I liked the way they organized the conference and the presentations. We had four great doctors talk; Dr Mark Green, who was also the Moderator, Dr Richard Lipton, Dr Alexander Mauskop and Dr Carolyn Britton. Each doctor did an excellent job!

I have to tell you that I got so many different things out of the conference that I didn't expect to gain. The first silly thing is that although I believe there is help out there for things like weather or hormonal triggers, whenever I have brought them up to any of my doctors, they pretty much told me that nothing could be done to help. It was very strange to actually hear doctors talk about things that can be tried to help us with these triggers. Even if they don't work for everyone, at least something is being tried that has worked for others. It was very refreshing.

I also picked up on additional aura's I have that I had never associated with my Migraines. I've read about them a gazillion times, but I don't know why I never linked them to me before. I can think of two different reasons for my oversite. First of all, when I keep my diary, I usually start after the Migraine hits. I know I should be keeping track of everything that goes on all the time because if I did, I might have picked up on some of these signs a little sooner than in a conference.

Second, I've had these symptoms for a long time. I know I've had Migraines since I was about six because I remember going to the doctor for headaches at that age. I can also remember some of the more severe episodes throughout the years which I thought were normal headaches, but definitely know now that they were not usual. I never connected some of these long time symptoms with my headaches and even after I was officially diagnosed, because these warning signs were still typical to me and just another thing I figured happened to everyone every so often.

I've heard people talking about blurry vision as an aura all of the time. After watching a video, I discovered that was me! I have had this from time to time, but I would blame it on my tired eyes or my contacts when I wore them and just tried to gently rub my vision clear. It never worked, but it wouldn't stop me from trying again because it had to work sometime.

Another visual aura? Someone talked about having problems reading because the words were jumping all over the page. I thought I was just overly tired when that happened, even if I had a good nights sleep and didn't really feel tired. I knew it didn't make logical sense, but I could make myself understand that excuse.

The only real complaint I had about the conference was that the room was a little too bright. I had my hat and could block out most of the light, but I would have expected the lights to be dimmer especially given the audience. I know I should have said something, but sometimes so I don't say something unfiltered and in a tone I don't want to use, I will stay quiet. I've learned that from work.

This room also helped me identify another symptom I had excused away in the past, but will know to look for it in the future. I yawn. It is a different yawn from my tired yawn. These are three more symptoms I know I can look for to warn myself that a Migraine may be coming that I don't think I would have noticed if I hadn't gone to the conference.

I think everyone was somewhat amused or at least could relate to a story Dr Lipton told about his son. He diagnosed his son at home when his son was twelve with having Migraines. Dr Lipton's mother wanted him to get an official diagnosis even though he is a neurologist with a sub-specialty in headaches.

His wife took their son to his very competent pediatrician who said she wanted him tested for Lyme disease or said it could be a sinus headache. When is wife asked about Migraine, the pediatrician pretty much said it couldn't be that, even though there was a family history, and also said that even if it was Migraine, there would be nothing they could do to help with the Migraines. That statement emphasizes how a lot of doctors don't understand Migraine or how to treat it. It's very frustrating, but I don't have to tell you that!

The conference was about Bridging the Gap Between Patient & Clinician. Each physician took a different area to talk about. The topics that were discussed at our conference were: Migraine Impact, Treatment of Migraine, Variety of Headaches and Pitfalls in Headache Management.

Each doctor had a little skit done with their presentation. I think this helped reinforce their topics. For me, I am hoping that it will make me an even better patient especially as I start preparing for a new doctor. It's very important that we tell our doctors exactly what is going on with our headaches and any new symptoms we may experience.

Each item we explain or when a new symptom occurs, can give our doctors the clues they need to properly treat us or give them an indication to run additional tests. It can also be valuable to ourselves to fully explain the impact Migraine has in our lives. This would include all aspects of your life; work, home, social, etc. How is a doctor supposed to know how Migraines really affect us unless we specifically tell them?

I really enjoyed the conference and would attend another one in the future. The NHF said they would like to keep having these conferences and is planning additional ones in the future. I can't wait!

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Moving On

I went into my August doctor's appointment frustrated and left discouraged for different reasons. During that visit I asked my doctor for her opinions around the path she saw for me after she didn't seem to like some of the ideas I brought up. She finally started shaking up some of my treatments and whether or not they worked, I felt like we were trying different things; not just another dosage change or another medication in the same class.

I know I've been contemplating a different doctor for some time, but I have a good rapport with her. There is a lot of back and forth between us. Even though I felt like things were finally changing, I was still frustrated from that visit. I needed to do a lot of deep thinking, but I had/have a great number of things going on and even found myself less prepared for my next visit than I like.

I had another appointment this week and I've finally reached that fork in the road where I can't procrastinate or use my shabby reasoning any longer and must move on. As I entered the waiting room, there was a sign on the window that said she was dropping my insurance. I was a bit shocked, but I also knew that was the big kick in the butt I needed.

We had a nice visit anyway. I told her I don't go out of network and she totally understood. She ended up giving me the names of four different neurologists. We both wanted to make sure that any of those doctor's could handle, let's say, my personality. I found part of our conversation a little amusing when she said she shares patients with one of these doctors and had seen one of these patients the other day.

Alrighty now, what question comes to your mind? Well, I flat out asked her why a patient from the other practice would come to see her. The answer? This is not a quote, but she basically said if a patient is too complicated for the other practice, they will send the patient to her. She grinned as I smiled, nodded and didn't say what was hanging on the tip of my tongue. If I've been questioning my doctor, why would I ever think about going to a doctor that gives away her patients?

I really do like my doctor. She is the best doctor I've had to date and we've really been through plenty together, but I know or have known for some time that I needed to move on. She even told me that if I ever need anything, she would be there and help me. I thought that was really nice especially because I believe that came from the heart.

I know what I've been planning on doing for a while, but just for giggles, I figured I would research these doctors anyway. Three of them ended up being out of network and the one who was in network, was the one who gives away her more complicated cases. Hahaha! I also looked at several of the doctor rating reviews. Yea, there would be no way I would ever even think about going to this doctor. However, while I was doing all of this, I was also gathering all of the research and paperwork I had done last February.

Yes, the first thing the next morning, I placed another call to my next doctor's office. As expected, I was put on the up to 5 days callback list. I like knowing what to expect, but that was another reason for my procrastination in calling this office back. The last time I called the office, there was some confusion in our trying to get together and every time I have thought about calling back, I tried to find 5 days in a row that I have free so I can drop whatever I am doing to take their call.

It's a good thing I have no choice to keep stalling this time. So now I play the waiting game and if there is confusion in our getting together on the phone, I have to keep pursuing it anyway. No excuses now and my phone is practically glued to me.

To finish off my doctor's visit this week, I had to have my iFMLA recertification form filled out again. I guess this is an example of how some doctors may view me as a little challenging, but I need a doctor who will work with me on important things like this. To avoid the same issues I had when I renewed my last iFMLA recertification, I told my doctor that I had the forms and to try to avoid some of the same 'confusion' from the last time, I had pre-filled them out, but also included a blank form if she preferred that.

She smirked as we made eye contact and communicated a lot without saying a word. I don't think she was very happy with the way the whole situation was handled by her office either. She took it the right way and managed it as it was already in my fax by the time I got back to work. This is something I will miss in a relationship with a doctor, but I want a cure! Ok, I'm back to reality now, I know there is no cure yet so I'll settle for a preventative measurement that controls my Migraines for now. Is that too much to ask??

More to come on the journey to my next doctor.

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Keep Trying

I would say I am getting confused again, but in reality, I know what I should do. My current neurologist has been, by far, the best doctor I have gone to for my Migraines so far, but I don't know if she is the best doctor for my Migraines.

I'm not sure that makes sense, but I keep getting closer to making the decision to move on. I have a really good rapport with my doctor where we can talk about anything. However, sometimes she seems to forget what's important to me from previous visits and will talk nonsense or against things I strongly believe in. I have been building a pro and con list around her which has a lot of items in both columns.

During my visit with her last week, we got on the subject of the elimination diet. If you know me, you will know that I believe in the elimination diet as I do not think I would have found most of my food triggers if I did not do the diet and left it up to discovering the foods that trigger my Migraines. It is not easy to do a full blown elimination diet, but it is the only way I could have ever done it as there are other ways to go about doing the diet too.

I also believe I am especially sensitive about the diet because my first neurologist tried to discourage me from trying the elimination diet by telling me she thought 'it would be a complete waste of my time' and another neurologist told me that 'sometimes you could find too much on the elimination diet'. Both neurologists did not see any value in the diet and let me know it. I started my elimination diet anyway right after talking with my first neurologist and was able to show her what a huge difference the diet made for me at my next, which was also my last visit with her. It was actually the only time I ever felt like she really listened to anything I ever said to her.

During my first visit with my current neurologist, she seemed pleased that I had already completed the elimination diet. Now she keeps saying that she does not believe in it; that she finds the best way to find a food trigger is to notice that it keeps triggering you. She did keep agreeing with me as I explained how I felt the diet could be tricky and that we do need to be careful when adding back a new food while on the diet because we have to be cognizant of other Migraine triggers going on around us too. That these other triggers may interfere with the diet and we may need to reintroduce the new food again at another time. Somehow I think she may have been just appeasing me to some extent too. As I mentioned, I do not think I would have found most of my food triggers without having done the elimination diet the way I did it.

I let her know that the whole reason I brought this subject up was because I had just started looking into tyramine. Honestly, so much of what I had seen in my preliminary research made a lot of sense to me where I feel I need to look into it further. She actually shook her head no insinuating that it would not help. So you know what that means, don't you? I have to do a lot more research around tyramine, decide what I need to do and do it.

I moved on to my next topic from there. I told her that I am very frustrated and running out of ideas. I wanted to know what ideas she had for me. She mentioned a few drugs in one class and botox. I know I am not ready to try botox yet and it really kind of surprised me that she brought it up now plus we had some interesting side conversations around that. We ended up choosing a new medication to try and I know we came up with the decision based on our dialog. Can you see why/how I get so confused about this doctor?

Sometimes it gets so easy to just want to give up on trying to help Migraines because it seems like so many things trigger us and nothing seems to work to prevent them which just leaves us easily discouraged. As tough as it is, we have to remember that we need to keep striving for the help and support we do need. I know how hard this is to do especially during the most frustrating and trying of times. We have to try to keep in mind what we have and what we need to keep working for.

I know for me, no matter how old my kids get, I have always enjoyed them at whatever age they are and the grown ups they are turning into. They are my inspiration to keep going. Tomorrow is going to be a real tough day and one of those days you pray not to get a Migraine. I wish my Migraines were under better control right now, but I have to work through the day as best I can and use this as a motivator to keep trying to find that magic bullet.

I will be dropping my son off at school, but worse, I will then go to my cousin's to say goodbye to her son who will not make it back to school for his sophomore year of college. I don't know how I am going to face my cousin as there is nothing anyone can do for her. No matter how tough Migraines are, things can always be worse and having a Migraine during tough times does not help which is why we must work hard to make them as controllable as we can. We have to be ready to help others who may need us without worrying all of the time about our Migraines getting in the way.

I am believing my best chance for better managing my Migraines is to go to a real Migraine specialist. I know I am real lucky in that the Migraine specialist I would want to go to is only the next state over and two hours from my home. Other Migraineurs need to drive a full day or even fly to their Migraine specialist. Regardless, we need to do what we can to manage our Migraines and I am still working through a couple of issues before making the choice that will be best for me.

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Tough Month Ahead

I find many things with Migraines are cyclical and coping is no exception to that rule. What do you do when you know you are not coping well?

I know I have a lot going on right now, my Migraine count is up and overall, I'm just not feeling like myself. I am trying to take one thing at a time and not worry about things I cannot control, but sometimes that's easier said than done.

I'm sure my trips to Pittsburgh with my parents were a lot more stressful than I let myself think they were. I can usually tell by my reactions to things like snapping at my mother while she is trying to be funny or even worse, snapping at my father while we were waiting for him to be wheeled away for surgery. I don't think I've ever snapped at my father before in my life and I know that was not a good time. I know I shocked both of my parents as well as myself.

I’m sure like most of you, I get even more frustrated as my Migraine count goes up which makes it even harder to cope with everything. I've even started to run into medication limitations again and I'm still trying to work through my endocrinologist visit. I don’t like going to doctors for the first time especially when I have a Migraine going on. I have found that although I seem totally functional when I have a Migraine, I am stifled when trying to think and talk. I am supposed to go back to the endocrinologist at the end of the year and have to have another ultrasound done by then too.

I have so many other pressing matters going on right now too. It is only three weeks until my company moves. I am very grateful that they plan to accommodate my light sensitivity again in the new building. However, there are a lot of loose plans around this accommodation right now. I have been trying not to stress about this since they told us about the move, but I don’t think they realize how big of a trigger lights can be for me. How can they when I still have a hard time understanding it myself sometimes? Honestly, I just wish I could be normal and not cause all of this trouble.

Currently my desk in unsettled meaning that originally I was supposed to be butted up against an office so I would be facing a corner. This really would have been great! Well, then they got rid of the office on paper and my desk was on an end overlooking a whole bank of lights which would have been impossible to accommodate the way I would need it to be. The last plan I saw there was something back in front of me, but they couldn't tell me if it was a room or another cube. In my convoluted world, that makes a big difference.

The plan is to put light sleeves around my cube but they are also going to be very careful about not interfering with my neighbors lighting rights. I have been assured that they will do whatever it takes but I am starting to feel like am a complainer and I can’t put my job in jeopardy.

I do have my hat accommodation to fall back on, but then I would be exposing my invisible illness to everyone every day because if I needed to wear a hat every day, then that is what I would do. The problem is that once I wear a hat for a certain amount of time, then I have to keep it on for the rest of the day because of severe hat hair. The other problem with a hat is that after wearing a hat for a while, it can start giving me a headache. It’s always such a precarious balance. I’ve been lucky where I am now in that I could turn out my own lights when needed and have only had to wear my hat for short periods of time while outside of my office.

I’m having another issue at work that has slowly cropped up lately. Although I have been backing off, it hasn’t stopped someone who has, until recently, been a very close Migraine confidant for me. We have been very close and shared many serious health issues for over a decade. The problem is that recently she has become comfortable making comments to and around others about my Migraines even if they didn’t know anything about them; even if there was nothing to really precipitate the comment. This is particularly disturbing to me at work where I will advocate as needed, but try to stay in my own place at other times especially because Migraines are so misunderstood and I cannot go around work lecturing about Migraines all of the time. I haven’t told anyone about her health issues and especially her last health scare where I know she would not have been able to keep it together.

Do you have a Migraine confidant? Do you have a confidant at work? Do you feel it's helpful and that it's really needed? She is still my friend, but I cannot talk to her or bounce things off of her right now. I miss that, but I have to remain cautious – especially at work. Maybe I come across as being open about my Migraines and having no boundries, but she knew I was very open with her and more limiting with others although open with them after assessing how much they really wanted to know. The problem is that she has done this on a few occasions lately and most recently at a corporate event where we didn’t know the other people in the room. Maybe I am being too sensitive, but I still think it’s for me to talk about me, for me to bring up the subject and not someone else.

There are a lot of things going on at work right now and I know I need to make it through this next month the best I can. It’s going to be tough and especially without someone to talk to about with how I’m doing or what’s going on with me – someone to bounce ideas off of and help me cope. I can’t do that right now. In addition to moving in this next month, we are also changing one of our big systems that we use every day. We are currently going through this very tedious training in addition to keeping up with our regular duties. There will be some manual intervention that will be needed at the time of the switchover as well.

I also have two huge projects that are due by the end of the month. At this point, I don’t know how I’m going to finish them although I have to do my best. I have a hard time working really late like I have done in the past to complete this job and weekends have been full of completing my home needs and catching up from my normal late work nights. I know once I get past some of this stuff I won’t be as stressed. I just wish I would stop being so tired all of the time.

Can you believe next weekend one of my sons will be going back to school already? I love having my boys around and will miss him terribly. I know he is in a good place there and doing very well, but he is such a pleasure to have around when he is home. As a matter of fact, we just put in a new mailbox post today. It was so much fun considering neither one of us knew what we were doing. I’m still trying to get the cement out of my ring, but if it doesn’t come out, I will think of him whenever I see it.

I have another neurologist visit next week . I have to find out what ideas she has as I am running out of them, but do want to bring something up with her again. I have asked her a few times about weather related Migraines and if there was anything that can be done to help them. I even mentioned that I had read where some people had successes trying different things, but I have always felt shut down as she said there is nothing you can do about weather triggered Migraines. I read another article today which was written by Teri Robert on Migraines Triggered by Weather Changes. It gave me a rejuvenated hope even though it ends with: “If you experience Migraines triggered by changes in weather, it’s well worth talking with your doctor about options to prevent these Migraines. Not everyone will be successful in this quest, but many people will be.”

It’s kind of frustrating to have to bring this up to my doctor again, but it’s also hopeful that different ideas given in the article have helped some people. I would rather try something and it not work then just give up. As you can see, I will need to bring this subject with up her again which will probably be about the fifth time.

Like so many others, I know I have a lot of stresses and frustrations going on right now. I am trying to deal and cope with it the best I can. One way I am doing that right now is by reading old blog carnivals that dealt with coping strategies.

The Headache & Migraine Disease Blog Carnival was created to provide both headache patients and people who blog about headaches with unique opportunities to share ideas on topics of particular interest and importance to us. Here are some of these older coping blog carnivals I am going through to try to pick up some additional helpful hints: Coping strategies, Migraines & Spirituality, How do you cope with your headache disorder and Hobbies & Coping.

What do you do that you find helps you deal better with your Migraines especially during more frustrating times?

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