Did Botox come at the Right Time?

How do you know if a new preventative is working or at least helping a little bit? I tried my first round of Botox in June and I think I can answer that question.

I’ve read where it’s hard to judge how well Botox will work based on the first round as it can be so hit or miss and that hopefully subsequent rounds can be more effective; that additional rounds of Botox can build on the Botox you already had which can help it work better for those who Botox will help.  I hope so.

The toughest part about my first round was having my neck get adjusted to the Botox as my neck was super sore for about two weeks after as my other neck muscles needed to strengthen up to take over for the muscles that were affected by the Botox. I had anticipated the ‘frozen’ forehead so that didn’t come like the surprise of the sore neck muscles.

I have to say that I have been unintentionally testing Botox since I received it. At first, I felt almost forced to reduce one of my medications since I could no longer deal with its cognitive side effects.

My mind has always been something I could count on, but these side effects grew to the point where it was hard for me to trust my memory, hard to be in a constant fog, to write down everything just to forget where all the little notes were and to basically feel too disheveled. Botox helped enough this first round to allow me to manage this medication change without my Migraines getting worse.

I’ve been met with a few unavoidable triggers that could have made things much worse too. It seems like we’ve had a lot of thunderstorms this summer. I feel like the Migraines managed these storms better than they have in a while and I think better because I had the Botox which is really the only explainable difference for me.

My biggest challenge came about a month after receiving Botox and continues through today; everything started hitting the fan then. My husband has been in the ED and admitted to the hospital three times since then. Of course there is a lot of stress that comes with this, but there are lots of other triggers associated with it too. There are the lights in the ED, the hospital rooms and the different smells to contend with in this closed environment. Although we may be able to control a little corner of this space, we can’t regulate much of it.

I also found that I needed to learn and do many things at home that I didn’t need to worry about before. I had to figure out the on-line addresses where all of the bills were paid. I needed to figure out how to apply for a student loan from soup to nuts. I needed to figure out all of this new healthcare stuff I was about to be inundated with from everywhere. I needed to figure out an old tax return as we were being audited on one of our old returns.  I needed to get my younger son back to school early even though he was not cleared to play football this year as he was officially put out for the season due to the concussion he sustained during their spring season.

Not only were there other personal stuff I needed to take care of, but it was a very time intensive solid deadlines period at work too. I know it’s easy to say that home and family have to come first, but there is also that balancing act that always has to be done especially when you feel like you are continuously walking on a thin tightrope at work already. Not only that, but if I didn’t get my work-work completed, it would have adversely affected the people that report to me and how could I let that happen to them?

Can you say too much stress and too little sleep (another huge trigger) while trying to do everything except for really taking care of myself? But what was I supposed to do? What should I have done or not done? I do have to say that my boss made things as easy for me as possible which helped tremendously.  I honestly don’t know what I would have done if I had a different boss while trying to work through this time.

Anyway, back to Botox. I don’t know that I could have made it this far if I didn’t try it at the time that I did especially because it allowed me to reduce the medication that was affecting my thinking and mind clarity. Botox decreased the number of Migraines I got slightly, but I think where it made the biggest difference so far with this first round is that it allowed me to keep my productivity up more. Between being able to decrease the one medication, getting rid of the fog and not having an increase in Migraines, I have to conclude that the first round had a positive effect.

I have felt the Botox wearing off over the last few weeks and can’t wait to try the second round as I hope to have even more success. Unfortunately, my doctor needed to delay my next Botox appointment and I will continue to count the number of days until then. Each week gets a little tougher and I fear going back to the state I was in before I tried Botox when I was getting really bad with increased Migraines and was generally having a very difficult time coping with everything.

As silly as this may sound, my advice would be to get to know the things at home that you don’t normally handle or know a lot around. You don’t need to be an expert, but you should have an idea of where things are (websites, passwords, etc.), and how to take care of them – just in case. It would make it much simpler and less stressful for you if that time ever came that you needed to take on the additional responsibilities that someone else handles right now to make things easier on you.

As you can see, Botox has been super challenged this first go around. I am encouraged by the results especially the increased productivity I feel I have gotten so far while on it. I felt more like my old self and am hoping to get even better results from subsequent rounds. I still countdown the days until my next Botox treatment as I feel the Migraines squeezing tighter every day. I can’t wait for them to hopefully loosen up again and go away from the next Botox treatment.

How well did Botox work for you during your first round? Did it get better or worse with additional rounds? Did you have any extra challenges during your Botox trials?

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…

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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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.

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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Migraine Related Nausea; Win an iPad2

The last time I went to my neurologist, we talked about alternatives to oral triptans. I normally get nauseous during my Migraines and on occasion, don't feel like taking a very needed triptan because of the nausea.

I wanted to talk to her about a different way to take my abortive for when I don't want to take any medications orally. She said she's not a big fan of injectables, so she opted with the nasal spray form for me. Did you know that our digestive system can slow down during a Migraine which could be one reason why oral medications may seem to work inconsistently or not at all?

I was looking forward to trying the new triptan method, but unfortunately, I could not use it the first few times I really wanted to try it. My nose was so congested that there was no way I was going to use any type of a nasal spray. Not only did I think I wouldn't be able to apply the nasal medication, but I really didn't even want to touch my nose. Because of my Migraine related nausea, I did not want to drink anything or put any oral medication into my stomach either which included taking oral triptans so I pretty much felt triptanless.

Of course I will talk to my doctor during my next visit about an injectable abortive again. Although I am not really overjoyed at the idea of giving myself an injection and have heard of some of those side effects, I am willing to try anything that might help my Migraines. I also carry around an Epipen; should I not use it if I ever needed it because it might hurt or be uncomfortable? That would be silly and I feel the same way about an injectable triptan.

I have since had a chance to try the nasal spray triptan. Like the oral triptans, sometimes it seems to help while other times it doesn't. Plus the nasal spray can occasionally have some untasty and other side effects.

If I can't always take oral triptans and I can't always use the nasal spray and my doctor doesn't like to prescribe injectables, what am I supposed to do? It would be nice to have another alternate way to take a Migraine abortive and I have heard of another form that will possibly be coming to us in the near future.

There is a transdermal (skin) sumatriptan patch, Zelrix, where the Food and Drug Administration is currently reviewing the drug application for approval. A decision is expected in late August. If that happens, the Zelrix patch may be available in 2012.

Zelrix is designed to provide Migraine patients fast onset and sustained relief through a non-oral route of administration. Hopefully Zelrix will provide a better alternative for many Migraineurs by bypassing nausea and vomiting and by minimizing other side effects. Zelrix has a controlled delivery technology that uses a mild electrical current to actively transport medication through the skin using a process called iontophoresis. Here is more information on the Zelrix patch. There was also information presented about the Migraine patch data at last month's American Headache Society's Meeting in Washington DC and additional data was to be presented at the International Headache Society's Congress in Berlin at the end of June.

What do you do, what do you take, where do you go for help or information when you get nauseous from your Migraines? How do you deal with the nausea part of your Migraines?

There is a new website that gives us information on Migraine related nausea. It's an easy URL to remember, www.migrainenausea.com. There is already a lot of stats and facts and other information on this site which is still being developed. I plan to keep checking back to see what new information gets added as I am always looking for better ways of trying to handle that nauseous feeling. I know for me, the nausea can be the more challenging part of a Migraine than the headache phase.

If you log onto the website, you'll discover many of the things already out there including a video clip from a Migraine expert, who also happens to suffer from Migraines himself, another video from another Migraineur, a news page and many questions/facts that are asked and answered along with all of those stats I like to look at. I can't wait to see what else is added to the site.

This Migraine-Related Nausea More Than A Headache site is also running a contest where five entrants will be randomly selected to win an Apple iPad 2. The sweepstakes ends at 3:00 pm EDT on October 14, 2011. There is a complete set of rules on the site. In ten words or less, entrants need to describe what their Migraine related nausea feels like.

Good Luck!

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Facebook Friends Friends

I am not a big facebooker, but I do have an account. My friends are mostly family members along with some friends, some moms of my boys friends and some of my friends kids. This list mostly grows as my nieces and nephews get old enough to have an account of their own. It's really neat to see them grow up and come into their own personalities; especially watching how they interact with their friends and each other.

I got so freaked out yesterday as I was looking at a posting on my News Feed page. It was a very innocent post that one of my friend’s daughter made. I really adore this girl, but one of the responses she received piqued my curiosity so I dug into it a little deeper. I ended up going into this other kid's profile and looking at her friends list. No, I'm not a stalker, I was just getting this very bad feeling and I had to investigate it as far as I could take it.

You're not going to believe this. The friend of my friends daughter is the daughter of my first neurologist! Can I throw up now? I still get the heebie geebies whenever I think about this doctor or even drive by her office. Unfortunately, her office is in town, across the street from one of the churches I have been frequenting and right next door to a place where one of my brothers likes to meet me sometimes. (He doesn't know how I feel about next door.)

I didn't know much about Migraines when I first started going to see her and she was no help in educating me at all about Migraines!! In many ways, I feel like I wouldn't be where I am today if she wasn't as incompetent as she was because when I get angry, I get busy. There were two incidents that stick out the most in my mind when I think of her, although there were many other things that occurred that I will never forget either.

The first thing that makes me shiver is when I think about a new medication she had given to me. I let enough time pass to determine that it was not working and my Migraines were actually getting worse. I tend not to want to make waves (hehe), but I ended up calling her office because I couldn't take it any longer. While talking to her, I could tell something was very off and it was like she just didn't believe me. This is something that will set me off very easily, but I was able to keep relatively calm and she reluctantly agreed to some other alternative I pulled out of my hat because she wasn't going to do anything to help me until my next visit. Really? Yes, really. Clonazepam was not the right drug to help me with my Migraines.

After getting a little more education and becoming a little proactive for myself, I thought that it would be good to try the elimination diet especially since nothing else was helping. Still trying to be good and only follow doctor orders, I decided I would start it right after talking to my doctor. I couldn't believe it when she didn't think it would be worth my while to try the diet! Luckily, I had put a lot of work into my plan, done a lot of research, had already laid a lot of the groundwork and decided to continue with my plan anyway.

This is where I started thinking for myself and using my doctors as a guide to assist with the decision I thought would be best for me and advocating for myself.

The best part of these two experiences with this doctor is that during my last visit with her, I brought all kinds of charts and documents which showed her how much the elimination diet had helped me. This was the only visit I thought she ever truly listened to what I had to say and actually joined me on my side of her desk to take a look at the paperwork I brought as I went through everything.

This taught me that no matter what I have to say, I deserve to have my doctor listen to what I am talking about - not only for her benefit, but more importantly for me.

While talking to her during this visit, this was also when she slipped and told me that the only reason she put me on the clonazepam was because she thought my Migraines were totally stress related! Honestly, I have no idea how I was able to remain calm for the rest of this visit considering how I knew this drug did nothing for my Migraines or for me, how she never listened to anything I had to say until this visit and how I never said anything about any stress in my life AT ALL! I know there are other ways to tell when someone is under some stress, but we never talked about anything like that.

I kept my cool because I knew this was my last visit with her. I only went back to show her that yes, the elimination diet and finding any triggers might really be worth someones while plus I needed a refill on my real prescriptions until I could get in to see my next new doctor as I would never, ever go back to her even if she was the last neurologist left on earth. I also felt the need to go back to her this last time because I knew she would still be treating unsuspecting Migraine patients and I am hoping my last visit made a difference to her practice. I later found out who the doctor was that she did her fellowship under; another neurologist I would never recommend to anyone.

I absolutely don't regret going to this neurologist because she honestly taught me invaluable lessons about how my relationship should, or more importantly, should not be with my doctors. I know I have to take my own health and put it into my hands while partnering with my competent doctors. I have to keep working toward having the best doctor for me and keeping myself as educated as I can about Migraines too. It's also important to stay as active as we can in any legislative action that is going on. This is not as difficult as it may sound as there are many people who help us make this as easy on us as possible to get us involved. It can take as little as five minutes of our time to get in touch with our congresspeople. We need to get as many people as we can involved so we can get the help we need for our Migraine disease.

Although I don't blame my first neurologist's daughter for her mother's incompetency as a doctor, I was not expecting to see a connection to this doctor yesterday, especially on my facebook page and to have this rush of memories come flooding back on me. I thought I got rid of her a few years ago and only expected to bump into her every so often at the grocery store where she barely recognizes me even though I don't think she quite places where she knows me from either. I definitely never stop to chit chat with her as I am afraid I would say something inappropriate for the grocery store and I would rather leave her in my past anyway.

Have you ever bumped into one of your old doctors? I presume she is a nice person with a normal life; just not very good at her job. I have observed her at the store a few times and even heard her on the phone with her daughter (in the middle of one of my appointments), but she is someone I don't want any type of a relationship with either.

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Don't forget the Unavoidable

I know I overdid it a little on cookie weekend and still think I would have been alright, but there is one big thing I always seem to forget about. I have to leave room for the triggers I can't avoid.

Even if last weekend was not so busy, I would have been hit by this unavoidable trigger, but I don't think I would have been hit as hard as I was since I was a little more worn down than usual. My arsenal of medications probably would have worked a little better than they did too.

In someways, Migraine disease can remind me of when I was pregnant. I always had to know to stop things before I became tired. If I waited until it was too late, I'd be worn out for even longer than normal. I was tired after cookie weekend and didn't think too much of it until after the unavoidable trigger hit.

I left work early on Tuesday and ended up taking a new medication. I don't know if that is part of the reason I was off the remainder of the week, but I know I will need to try it another time to see how I react to it again. This is another very frustrating part of Migraine disease. We are constantly performing these experiments on ourselves. This testing could be with new medications, foods or just about anything. It 'simply' takes time and patience before we find whats right for us.

I now have a whole year to figure out what to do about next year's cookie weekend. There should be some difference that I won't have to worry about like I will not be in this phase of the elimination diet and will not need to go food shopping because of that. I don't typically go food shopping on cookie weekend, but needed to this year because I have to cook fresh foods for the elimination diet as I continue to delve through different foods.

I am open to any new ideas for what to do next year. I will still need to bake the cookies in one weekend and will be using my dough mixer again which was super helpful. I will not go food shopping, cook anything else and I will nap again. I can't get as worn down as I did this year. Do you have any suggestions about what to do next year?

Take it easy during the holidays. Try not to overdo it and leave room in case you run into some of your unavoidable triggers. I hope you have a happy and healthy holiday season.

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Rang the Bell

I went to work the other morning feeling fine. It didn't matter that I had woken up in the middle of the night and needed to take a triptan. It had worked and I was able to sleep through the remainder of the night. I didn't even have that triptan hangover feeling when I woke up in the morning as I can get sometimes.

I made it through an important early morning conference call when shortly after, I didn't even need to play that silly wrestling game I often have with myself. By the way this one was coming on and with the symptoms that were emerging, I knew I would not be able to stay at work and luckily, my calendar was unusually cooperative with my departing for the day especially at such an early hour.

This would also be the first time I was going to use my intermittent FMLA. The only reason the iFMLA really entered through my mind is because I knew theoretically what I needed to do, but now I needed to make sure everything was going to work the way it was supposed to. As always, my boss was great about things like this. When I made the call to him, he just asked if this was for FMLA which made it so much easier because I didn't really feel like talking much about it and these four little letters said everything. He knows the deal and what's going on. We did talk a little bit as he needed to make sure I didn't have anything that needed follow up.

After I got home and for various reasons, I ended up using my rescue medication. This was the third time I have taken it and the second time it did not help. I could still feel the pain past midnight. The thing that helped the most was sleep. I mostly slept from the time I got home until the next morning although I do confess that I occasionally answered some emails on my blackberry as I was expecting some things to come through. One that really scared me after I answered it was from the head honcho in our office. After I answered it, I was praying I was coherent as I don't normally email with him let alone after taking a synthetic opioid. I think I was ok in what I said.

In my company, I have up to two business days to report my absence upon my return to work for iFMLA. I called the leaves group first thing in the morning. I want to make sure everything was in order and everything is upfront. The person I got on the phone was so helpful and informative. She even gave me additional information about my leave that I tried to get from others in earlier conversations. I am confident of what I have to do if I need to call out again and gave my boss an update on everything he needed for my leave. We should both receive a new letter from our leaves department about this time off.

I have to be upfront with you. I don't like all of this fuss about taking this time off, but I don't want any problems with taking it if I really need it either. I know I am lucky my boss is really good about everything when I need time off, but then he would have little control about the new absence and tardy policy that just went into affect for my company which FMLA helps protect me against.

When my coworkers asked how I was feeling upon my return, I even surprised myself by the answer I gave in response to those close to me as long as we weren't in the middle of business stuff. My answer was that I felt better the morning before at the same time. This was earlier than the time I had decided to leave the day before and I really was feeling fine when I first arrived at work that day. This morning that I returned, I still didn't feel like myself, but there was no reason to stay home. I had more of that hangover feeling and it was good I came in as I needed to deal with escalated issues all day long.

Although I really had no choice about calling out this week, I often fight with myself about whether or not I should take time off. Because I did not wrestle with the decision this week, I tried to figure out why I typically have such a hard time with the whole process of calling out. I really don't think it has to do with not wanting to take care of myself as I know how much work, effort and cost I put into trying to control Migraines. There was only one thing that I kept coming up with that made my logical sense to me.

All of my life, I have been a very competitive person. Coming from a large, sports minded, sports involved family, there really was no other choice. In many ways, I think I feel like I am admitting defeat, giving up or losing by calling out or ringing the bell (during marine training, you can 'ring the bell' which signifies the end of your career in the marines - ring the bell; game over). I think calling out gives Migraine, an opponent I fight with all of the time, a victory.

It is time I change the way I view this although Migraine will still remain an adversary I need to conquer even if it means ringing the bell every so often. I guess that's just what I will need to do to regroup or come up with a new strategy in this battle on Migraines.

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New Neurologist is like New Boyfriend

Sometimes I feel like a new neurologist is like a new boyfriend. What I mean by that is unfortunately for them, they have to put up with some of the old baggage we bring with us from our old boyfriends even if it's not in our best interest.

You know how it is, if we extend ourselves out too much or too soon, we might get hurt again. Never mind that we might be hurting ourselves or not finding our true love because we are holding back too much.

This could also be related to if we don't tell our new neurologist everything we should because they may jump to the same wrong conclusion that a prior old neurologist jumped to. This could be hurting us when our new neurologist should have the full facts about us so we can hopefully find that true magic bullet to help our Migraines. The other part of this is if our new neurologist is not going to listen to everything we have to say and jump to the wrong conclusions, isn't it better to find out upfront that they are not the right doctor for us?

Like many people, I have a lot of stress going on from everywhere. I don't talk about stress with my doctors because to me, it is just a part of life. I know that certain times of the year, my stress will be increased. I know that it can be increased at any other time without notice too and don't even think about talking about money.

I had an old neurologist that made it even harder for me to talk about stress today even though I never talked to her about my stress levels. With this old neurologist, she put me on an anti-anxiety medication alone and expected this to take care of my Migraines. She didn't seem to like when I called to say it wasn't helping and I needed something else before our next scheduled appointment. I also provided her with an interim solution which she reluctantly agreed to accept. Sometime later I found out that she was convinced my Migraines were caused by stress and could not understand why the anti-anxiety medication did not help. So you can see one of many reasons she is no longer my doctor.

With my current doctor, I have only casually mentioned stress once and only because my BP was very high for me during one of my visits where I was too stressed out to come up with something else. I have white coat hypertension during the first few appointments with any new doctor where I let them know upfront about it and my current doctor was no exception in the beginning. I have been well past my white coat syndrome with her.

I know I'm going to have to have the stress talk with my current doctor soon. I do believe, in addition to other things, stress is interfering with my Migraines to some extent, but I also believe that stress is an exasperating factor and not a direct trigger. I know when I have the stress talk with my doctor that I am going to have the bigger talk with her that is long overdue, but I need to be mentally ready for the talk. I really like my doctor and she has helped me in many ways, but I am going to have to have that general Is Stress a Trigger or Exasperating Factor talk with her too.

She has mentioned on a number of occasions how stress can be a big trigger especially for her; she is also a Migraineur. I have ignored these comments so far and not subjected her with my opinion or challenged her on that statement yet, but the time is coming that I feel I need to address it. I don't think I'm going to be comfortable talking about my stress with her until I let her know my opinion on stress and am able to talk about it intelligibly. My doctor has listened to me on many of my far fetched ideas in the past. She is smart enough to make up her own mind in many areas. As long as she is open to the idea and doesn't shut it down right away, that is all I can ask and I believe she will do that.

My doctor is also a member of the International Headache Society (IHS). The IHS had moved stress from their trigger list to their list of exacerbating factors a few years ago. I will mention that to her as well as a lot of the points that Teri Robert makes in her MigraineCast on Is Stress a Migraine Trigger which she also has as a transcript of the podcast written out.

I have a lot to cover during my next doctor's visit since so much has gone on since my last appointment. I'm not sure if I'm going to be able to have our stress talk then, but if I want to be fair to my boyfriend, I mean my doctor, no I really mean myself, then I am going to have to have this talk sooner rather than later.

Who knows, if I can open her mind on this one, she may even make a better boyfriend for some of her other patients...

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Which Rat are You?

I was talking with a very interesting character recently who does something in the medical field. I don't know exactly what he does as he was very secretive about many things, but he is some type of a consultant that works with many different types of doctors including doctors who make sure different medical studies that go on are legitimate where all protocols and avenues of a study are followed.

Anyway, we got onto the subject of Migraines which led to many other different conversations. One place he went is that he talked about a rat study that was done on pain.

He said that there was a study done where they took three rats from the same family so the genes would be very similar. The rats were put on a heated surface where they wouldn't be able to leave that surface. I really hope this study was done with more than three rats or I don't know how viable such a small study would be, but then, that was not the point of his story.

Anyway, Rat A hopped many times after the heat was set on - let's say 180 times in a given timeframe to try to evade the heat, Rat B 100 times and Rat C 10 times. Then they gave the three rats an opiod derivative and repeated the test.

Which rat did the opiod affect the most? Which rat cut down their percentage of hops the most? What do you think and why?

The rat that the opiod helped the most was Rat A. It seems that if you are more sensitive to pain, then you are more sensitive to pain medications where it will help relieve your pain better than it may help other types of rats or people. Like I said, this is what this character said, but where it made the most sense to me is that I feel that Rat C explains me.

I am not the type to keep hopping around to avoid the heat or pain and I don't take much pain medication. I went most of my Migraine 'career' not taking any NSAIDs or even knowing that triptans existed. I recently received a synthetic opiod, but didn't find it to be very effective. I am sure I am not taking this pain med as often as I should either.

Which rat are you?

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Impulsive eDiet

I've been doing a lot of thinking since my last doctor's visit. I've kept this long term monthly Migraine chart for almost four years. Prior to going to my last doctor's appointment, I was able to identify some seasonal Migraine peaks which I hadn't notice before. Another thing that I observed on this chart is that the number of Migraines I've developed was never as low as it was while I was doing the elimination diet even during my seasonal peak periods. I think I've seen this before, but was able to excuse it away as other things which is probably partially right.

Although I've been pseudo thinking about the elimination diet recently, I haven't been serious enough to try it again. I've always been someone who has to plan out everything I am going to do and definitely something as big as changing my dietary needs to have every detail planned out. That's what I did the first time I completed the elimination diet.

When I did it before, I tried to do everything as thoroughly as possible so I would never have to do it again. Before that, I had never done any type of diet and knew I would never want to do it again. This first time, I planned it down to the date I was going to start it, the Migraine medication I would change back to for it and my daily food menu. I read everything I could find on the internet and even bought a couple of books to read.

Anyway, I did something very atypical of me today. I jumped into the elimination diet again this morning as a spur of the moment thing. I started seriously thinking about it last night. I gave away the books I had originally used and could only do minimal reading online. I am nervous about the medication I am on now as I always want to nibble which is not a good thing while on any type of diet. Being a planner, this is very hard for me to just jump into, but I felt like I needed to put a stake in the ground and just go for it. Exhale. I know I need to do this again and I figured the sooner I started it, the better off I would be.

Using my suspicions and upon reviewing my charts, I finally came to the conclusion that I really have no choice but to find out if I have any additional food triggers. I really don't want to do this, but I have not been able to identify if I have any other food triggers even if I suspected them.

When I did the elimination diet the first time, I found a lot of good triggers. However, I believe I have developed additional food triggers since then. When I did the diet before, I chose one meal for breakfast, one for lunch and one for dinner along with a snack that I could have whenever I felt like munching. I am doing that again this time because I can't remember how I would have changed it up from the last time.

I want to stick with this basic diet for at least six weeks. Of course this is not the best time to do the diet, but there really never is a good time to start. Since I didn't even know until today, I haven't told anyone about it yet which usually gives me the inspiration to keep going. I don't want to deviate from the diet as I really want to figure out if I am missing any other foods or ingredients that I should stay away from. I am hoping it will be easier to add back this time because I know many foods I won't have to add back since I already know they are triggers.

The other thing that keeps running through my head that really shouldn't be is the reaction of two previous doctors I used to go to. I totally don't understand why, but they were both down on the elimination diet. I know it is ludicrous, but this type of ignorance always baffles me into thinking I must be missing something although I really don't think so.

I don't see how I can justify, even to myself, going to a better Migraine doctor than the one I currently go to if I feel there are still things I should be trying to get my Migraines under better control first. I feel that if I were to go to a different Migraine doctor today and he were to ask me about my diet, I would have to say that I don't know if I have additional food triggers. At that point, I think he would tell me to find out. Unfortunately, he would not be able to tell me what my food triggers are since there is no easy test to tell us. That would be real nice!

So I am jumping feet first into another adventure I have not prepared for. Although I have been down this road before, the road is very different than it was the first time I traveled it. I don't really see another choice for me right now, but I know I need to embrace it.

I know it's only day one, but I think I've already endured my first hurdles while food shopping this morning. Ready or not, I've just started it again...

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Migraine Patterns

I realized a couple of things as I was preparing for my last doctor's visit. Although I keep a daily diary, I really don't look at my diary until I prepare to go to my next doctor's visit. My Migraines get worse in the summertime.

How often do you tally up your Migraine diary to figure out how you are doing in a given Migraine period? What I mean by a Migraine period is from one doctor visit to the next. I keep track of my Migraines in a daily diary, but I really don't look at it or analyze it from that diary.

As I prepare to go to my doctor, I transform my scribbled daily diary into a spreadsheet that spits out into a weekly and monthly graph. I can immediately see how my Migraines are evolving week after week and month after month. I also take the monthly Migraine values and add them to the end of a chart I've been keeping for almost four years. This gives me the visibility of how my Migraines have been doing over an extended period of time.

After evaluating my last set of graphs, I could see that my Migraines get worse every July/August and December/January for the last few years. I also take this graph and break it out by the doctors I've had over their given periods of time. On each doctor graph, I added in a trend line to easily see how my Migraines have reacted under each doctors care. It's really not as difficult as it sounds.

As I reviewed my graphs, I could see that my Migraines under my current doctor are still on a downward trend even through it is August and my Migraines are increasing as my annual tendencies indicate they would. I did have a good visit with her about a week ago where we discussed several paths we could take for my treatment. She went through the various medication classes and how my options are limited because of a medication I take for another disease. We decided together which way to proceed and that I will check back with her in another two months.

I am getting very discouraged with Migraine disease. I know that sounds funny; who wouldn't become dissuaded by chronic Migraines especially during their peak months and after having Migraines for most of their life. They are starting to affect too many other things in a negative manner now.

I try to question things in my control all of the time. I frequently question myself about the medications I take, different non medical options I can try and even if I have the right doctor for me at any point in time. Medications are frustrating because it takes a while to see if a new medication or dosage is helping before you can decide if it's helping or what to do next.

I also run through the pros and cons of my doctor. I believe she is still good for me. She is so much better than any of the previous doctors I have gone to for treatment. We definitely work together on my next steps. As a double check, I have taken the test; Is Your Doctor Right for You? a few times. She passes with flying colors whereas previous doctors had failed miserably even though I didn't need this test to tell me that. Other doctors had passed, but I knew I still needed to move on because they were good doctors and just couldn't help me with my Migraines.

My current doctor knows Migraines and Migraine medications. Although she is very good, I know she is not the top in her field, but I do believe she is still good for me right now. My doctor is also a member of the American and International Headache Societies and has gone to some of the conventions they offer.

I am also comforted in the fact that I do have my next doctor picked out, who is tops. It's nice to at least have that next plan if or when it is ever needed. There is nothing worse than not knowing where you need to go next. I've been there too many times in the past too; where you don't know who to turn to after and just stay with an inferior doctor getting substandard care. That is no good.

With this next doctor, my biggest hurdle is that money issue. I would have no right to complain about the distance to get to those offices even though it would be very tiring to get there. I hear all of the time how the money thing would be worth it, but it's just a hard thing to comprehend as bills pile up and unexpected expenses keep hitting home.

I don't know whether I should be encouraged or discouraged about finding this latest pattern of additional summer and winter Migraines. I think my Migraines are just getting the best of me lately and maybe because it is a peak Migraine period. I want to break all of these patterns now. I am ready to be Migraine free...

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My Trip

That title, My Trip, makes me feel like I've just returned from summer vacation, about to start the second grade and have been given a writing assignment to talk about something I did during my summer break. This trip, was actually a quick business trip I had to take this past week.

I'll start with the fun filled weekend before while preparing for the trip. I don't travel often any longer so I'm not as ready for trips any longer plus this trip was with people who were at my boss' level and higher with a couple of people at my level. Last weekend started off with with my Migraine trigger filled grocery trip. Luckily, I have learned to manage this much better than I used to handle them. My next plans were to do laundry, pack and see what else I needed for my trip so I could enjoy my Mother's Day the next day.

My weekend plans were very short lived. As I started preparing for these domestic duties, my power went out. We were having extremely forceful winds where many of the counties in my state had many different areas that lost power. The next morning, still no power. I even contemplated going to my sister's just to finish laundry and shop for the little things I still needed while on the way to her house, but since she lives about an hour away, that would be a lot of precious time lost. Luckily before I started to make alternate plans, my power went back on. Yeah!

As I was running around picking up some last minute items, that is when I got a textbook Migraine with aura. The aura hit, then a short time after, the Migraine which I was able to take care of before it got too out of hand. I really didn't want to treat anything during the weekend as the trip was going to be too trigger filled. I hadn't realized how much room my Migraine medications would take while packing either. Before this trip even started, I was faced with too many Migraine triggers - stress, lack of sleep, stress, lights, stress, forgot to eat, stress, etc. Oh, did I mention stress and that I also needed to figure out a way to get my son home from school while I was away? I know stress isn't really a trigger, but it will exasperate the many triggers that were present for me.

After a few conference calls on Monday morning, I left for my two hour drive to the never been to before airport. Actually, the travel went very well getting to my destinations. I met my boss at the airport as his flight landed within a half hour of mine. I looked forward to kicking back as he drove to our city, but that's not what ended up happening.

There was some type of a mix up with his drivers license so guess who needed to do ALL of the driving? Yup, me. Yuck. I typically like driving, just not in this type of a scenario, but at least I got the satisfaction of teasing him every chance I could get which is not something I normally would do plus I got the scare him a few times. Hehehe.

The next morning, I asked him for a favor at breakfast. I took off my Migraine mask (I like to hide my Migraines even before I have them) and told him my fear about the room we would be sitting in. I explained how I typically pick my seat in a room is based on the lighting. He listened and just said he would follow my lead and would let me pick the seat. Good thing he listened. As soon as we got to the building, we were split up and he ended up picking where we sat. I have to say, he really did a good job for the room.

This was all good, but when the nighttime came, I started having problems with one of my prodrome symptoms that I can't stand! I don't even like talking, but I can't stop talking and will talk way too much even though my inner voice is yelling to shut up sometimes when I am in prodrome. I already told you the levels of who was on this trip and many of these people I had never met before which typically keeps me very quiet to begin with. Sure enough, the next morning I found myself taking a triptan (very early) to try to relieve my head and make it through the day desperately hoping to keep some semblance of normal cognitive function.

This next day was a different story around the conference rooms as we found ourselves in a new conference room which had a whole bunch of round tables. When we entered the room, there was one other person already in there. Of course my boss just sat down there next to the other person. I tried and sat with them for a little while and then finally got up to move. There was absolutely no way I was even going to make it in that seat for a half an hour. I wasn't rude or anything and explained to the other person that I have light sensitivities and needed to move to a different table. My boss did catch on to my issue as he knew I wanted to be as discrete as I could be around my 'sensitivity'. From a personal standpoint and as much as I would love to, this is not the place to educate people about Migraines. Since we were also there early enough, I was able to play with the dimmer switches for the lights after I moved my seat and made the room exactly as I needed it to be. Yeah!

I won't go into my journey back home that night as I sat on the plane because of some air traffic squabbling, with screaming kids all around or my two hour ride back home after we landed, but I was real happy to be back home and in my own bed where I could start to catch up (eventually) on all of the sleep I had just lost.

When will we be able to handle everyday normal things without the fear of pain hanging over our heads? When will we be able to go on a quick trip without having to bring our drugstores with us? Without the fear of forgetting any of our meds? Without the fear of being incapacitated with pain and other symptoms? Without worrying about these 'nonsense' things that are so normal to everyone else?

I am still recovering from my trip, but will hopefully be back to myself tomorrow. This really is ridiculous.

Pharmaceutical Scientist

I have a close friend who is a scientist for a large Pharmaceutical company. I don't normally talk to her about drugs and such because who wants to talk about work on fun time? But we were out on a small girls night out with one other person. Since the two of them are new moms, our conversations covered a large variety of topics usually surrounding little girls.

I decided the time was right to ask my pharmaceutical researcher a general question about drugs. We are close enough that she is very familiar with many of my Migraine challenges. I asked how she felt about brand meds vs generic meds. She quickly answered that they were EXACTLY the same. To use the generics if you could. That the FDA has certain guidelines the drug companies have to follow so they are exactly the same.

I told her that I read about how the FDA allows a 20% variance, either way, in the bioavailability of generic medications. (Bioavailability is the rate at which a medication is absorbed into the body). I continued that I could get one prescription from one manufacturer which was 20% below the brand and then the next prescription could be from a different manufacturer which was 20% above. That could be a 40% difference from one prescription dose to the next.

She muttered some technical mumbo jumbo terms as she processed the information and threw in some FDAs and some pharmaceutical words. Finally she said that that makes sense and given the medications I have taken along with the difficulties I had with the generics, these generics probably wouldn't be a good choice for me. She knew about my trials with Topiramate even though I had never gone into my specific reactions with her.

My friend is someone who runs huge drug studies which go down to the metabolic level. Her exposure to drugs is very different than that of a pharmacist on many different levels. I was surprised and encouraged that I could pass new information about something I am uncomfortable talking about to someone who is very knowledgeable.

Next Step Migraine Doctor Visit

There were a couple of things I had to talk about with my neurologist during our appointment this past week for my Migraines. These were things I was not comfortable talking about with her even though I should have been. She doesn't make me feel as apprehensive as I was, it's more me doing it to myself. These items were very important to me and I needed to bring them up to her.

Luckily, the visit ended up going very well.

First of all, a little background. On my first visit with this Migraine doctor (actually one year ago today), I went down a whole list of what I was looking for with my doctor. At that point, I had gone through enough doctors and didn't want to waste our time so I wanted to make sure we were on the same page about a few things.

One item on this list was that I did not want to retry any medications I had already tried. You see, I've had some doctors put me back on the same medication, that did nothing for me, up to three times. She agreed with everything we talked about including this last point.

During this visit with her and at my request, I was switched back a Migraine preventative I was on previously. I stopped taking Verapamil last September after some intolerable side effects due to raising the dosage too high. I wanted to go back to it this time because I have another genetic disease that unbeknownst to me, the Verapamil may have been helping as well as my Migraines a little bit.

I started taking Verapamil shortly before my disease seemed to go into a remission of sorts. Although I hadn't noticed anything during this time, soon after I went off of Verapamil in September, my disease started showing signs of progressing again.

However, I never put any of these connections together until I read an article a couple of weeks ago about how they were testing the use of Verapamil with my disease. That was when I linked the Verapamil into this same time frame of my improvement and decided I had to go back on it to see if it does indeed help. Hopefully, I will find out within the next month or two if Verapamil actually makes a difference for me. Oh yea, and it would be an added bonus if it helps with the Migraines too!

Another huge thing I needed to talk to my doctor about was rescue medications for when my Migraines get out of control. Since my last visit with her, I had seven and twelve day Migraines which really needed to be broken sooner then they were. One problem I was facing was that I heard she no longer prescribed rescue medicines. I think once you get to a certain point with your Migraines, you really need to have a rescue medication lined up and I had passed that point.

I never wanted these medications around the house or it could have been that I just never wanted to face the fact that I may need them. Sometimes, I play too good of an ostrich with my Migraines for my own good. I am ready for rescues now and will take the appropriate care of the med in my home.

The way I brought up rescue meds to her, really left her no choice if she is a good Migraine doctor. I didn't threaten her or anything like that, but without realizing it, I had also left myself no choice if she did not prescribe it. I basically told her I was ready for the next phase in Migraine treatment. She never blinked an eye about prescribing it. She immediately went into her way of calculating which medication would be best for me based on all of the meds I am currently taking. This was a huge relief.

I have to confess that these two items made me even more concerned than I needed to be because I was looking at them as possible deal breakers with my relationship with my doctor. There was no need to worry as I was very relieved when I didn't have to make that decision. I am not ready to move on yet even though I have already picked out the next Migraine specialist I would want to see.

As a bonus to my visit, I also brought up my son to her and how we just realized he gets Migraines too. We talked about him for a little while which I'll save for another time. This went well too as I felt a little funny talking about someone else during my visit with her but she was really great.

It was a huge relief when the visit was over. I'm anticipating double dipping with using the Verapamil; to help out with both of my genetic diseases. I hope I never have to try the rescue medication, but it's nice to know I have it if I need it.

Migraine Medication Change Poem - Poetry Contest

I wrote an informal Migraine Poem for the 2010 Putting Our Heads Together Poetry Contest currently being run on MyMigraineConnection. This contest will be judged by the National Headache Foundation. The deadline to enter the contest is Wednesday, March 31st.

This is a fun contest for someone who has never written a poem all the way up to the skilled poet. You are invited to enter up to three poems for the contest. All entries must be about Migraines or headaches and be poetry, not prose. Here is a complete set of rules and the entry form.

I am not a poet, but I wrote about a Migraine subject that many of us go through - a medication change. I started this poem after my last doctor's visit during such an event. I am not a writer and don't even know how to punctuate it, but I wrote about how I felt and what was going on with me during this change. Here is my unofficial poem entry:


Migraine Medication Change

Another appointment concluded.
Hands filled with many scripts.
New meds and old meds expectant to do the job.
Will this be the combo for me?

Taper off the old.
Known symptoms return.
Naked once more with one less drug.
Is this the right change for me?

Everyday a different adventure.
Another unprevented disappointment.
More nausea, dizziness, can't remember the rest.
Is tihs the rhigt cgnhae for me?

Titrate up on the new med.
A different way to survive the day.
A fresh hope, another beginning.
Could I become human again?

Time will reveal my fate.
More endurance needed along the way.
Please work, please perform, please be the one.
Are you the answer to my prayer?

Each med change is met with hope.
This combo has to and will succeed.
How will I fare on my new path?
Only time and patience will tell from here.



There's still time for you to join. You can read some poems from previous contests or better yet, the 2010 Migraine poems that have already been submitted for this year's contest. Most importantly, have fun! That's a big reason I wrote my poem and another was so I could share my experience that you would understand. Good luck!

Pay More for Less Migraine Medication?

I switched one of my Migraine medications after my last doctor's visit. Using the insurance companies on-line 'price a medication' function for my group, I decided I would do multiple breakouts on the cost of this medication at various dosage levels.

This would help me get ready for my next doctor's visit and to see how much my mail in pharmacy would charge me if this Migraine medication has hope of working.

I found the results very, very interesting.

I started off the new Migraine medication at 50 mg, but had to titrate up from 25 first. I have since had to increase it to 75 mg. This medication comes in 25, 50 and 100 mg capsules. I priced it here from 50 mg to 100 mg.


At 50 mg, there are two ways to get to this dosage; two 25 mg capsules OR one 50 mg capsule. The two 25 mg capsules would cost 41.6% more than the one 50 mg capsule. In this case it would be more cost effective to get the one 50 mg capsule.

50 mg: 2-25mg OR 1-50mg
. 2-25mg > 1-50mg :
. it costs 41.6% more to get 2-25mg capsules vs 1-50mg capsule


At 75 mg, there are two ways to make up this dosage; three 25 mg capsules OR one 25 and 50 mg capsules. There wasn't much of a difference with this comparison. The one 25 and 50 mg capsules were only 1.2% more than the three 25 mg capsules.

75 mg: 3-25mg OR 1-25mg + 1-50mg
. 1-25mg + 1-50mg > 3-75mg :
. it costs 1.2% more to get 1-25mg + 1-50mg vs 3-75mg capsules


There are three ways to get to a 100 mg dosage; four 25 mg capsules OR two 50 mg capsules OR one 100 mg capsule. I thought this had the most surprising result. One 100 mg capsule cost 33.9% more than four 25 mg capsules while four 25 mg capsules are 57.5% more than two 50 mg capsules. However, the one 100 mg capsule is a whopping 110.7% MORE than two 50 mg capsules. The least expensive way to get this Migraine medication at 100 mg would be to order two 50 mg capsules per day instead of one 100 mg capsule or four 25 mg capsules.

With my insurance, it would cost me over TWO times more if I got just one 100 mg capsule instead of two 50 mg capsules - the same dosage of medication.

100 mg: 4-25mg OR 2-50mg OR 1-100mg
. 1-100mg > 4-25mg :
. it costs 33.9% more to get 1-100mg vs 4-25mg capsules

. 4-25mg > 2-50mg :
. it costs 57.5% more to get 4-25mg vs 2-50mg capsules

. 1-100mg > 2-50mg :
. it costs 110.7% more to get 1-100mg vs 2-50mg capsules
. or over 2x's more to get 1-100mg capsule than 2-50mg capsules


We should all review all of our Migraine and other medication costs whether we get them filled at a pharmacy or through mail order. It may be worth it to do these price comparisons between the different dosages even if you have to ask a pharmacist and can't get those prices on-line.

My next obstacle is that I am currently at 75 mg. What if this is a good dosage for me? At 75 mg, I would pay 18.1% more out of pocket for this prescription than if I got 100 mg using two 50 mg capsules. It's something to think about, but my decision would be to pay more for less because I know I can't split the capsules and more importantly, I really wouldn't want to take more of this Migraine medication than I really need to - even if it costs me a little more.

I just found this whole cost comparison very fascinating. Hopefully I didn't lose you too much with all of these numbers. I didn't include the Migraine medication name I take because it doesn't make any difference what it is since we should be looking at these types of cost comparisons for all of our medications.

Did you find any big differences from your inquiries?

Elevator vs Stairs - Stackable Trigger Follow Up

I had asked for advice a while back on an issue I was having with a stackable Migraine trigger. I was having problems when taking the stairs at work. I prefer taking the stairs up to the 4th floor rather than the elevator since I don't get much exercise plus I like taking the stairs, but it only triggered my Migraines sometimes.

Teri Robert gave me some questions to think about and Nancy Harris Bonk some alternative exercises I could try along with other things to think about around the stairs. So why do I bring this up again now? I wanted to share with you what I have been doing around this issue since I received their responses.

I was asked about my preventative medications, how often the stairs triggered me, what other triggers had to be present and if I could avoid any of them. I have had my preventatives tweaked a few times starting just before I posed my question and my doctor had added in dietary supplements. I'd been trying to keep track of different things that may have aggravated my walking up the stairs too.

I stumbled upon some of the other stackable items when I wasn't feeling well for a while and needed to take the elevator. Slowly different things started to sink in. It turns out that one of my biggest issues with the stairs is taking them up in the morning while carrying my super heavy laptop bag which I take home every night. This added too much extra exertion when I walked up the stairs in the morning. The stairs also have unprotected fluorescent lights which stack up with the extra exertion of walking up the stairs with the bag.

I can still take the stairs down and I take them up when I am not carrying heavy items. I feel so much better when I take the stairs, but would rather not do anything to trigger more Migraines.

I was given a link to 10 Ways for Migraineurs to Sneak in Some Exercise which gives some simple exercises that we can try to manage even on days we aren't feeling well. However, I just found out that I need to be careful if I follow item number 6, Park Further Away, on the sneaking in exercise list. I was also given another link on a study that showed Certain Exercises Won't Make our Migraines Worse. I've got to do something more about exercising since my pants keep shrinking. :-)

Someday I'll figure this disease out for me. I have to. Right now, I feel like I make some steps forward which is better than no steps at all.