Track Migraine Triggers

I had been testing the My Migraine Triggers^TM app for almost a week before I went to NY for its official unveiling. The makers of Excedrin^® Migraine developed this app along with one of the top Migraine neurologists (one who I’ve written a little snidbit about in the past) which is available for free on iTunes.

While I was showing some people the app, the comment was made about how big of a trigger sleep must be for me since that took up a large piece of the pie chart the app offers. The picture of my pie chart as it appeared on that day is pictured above.

I will admit that the items in the chart can be big triggers and exasperating factors for my Migraines. It was a busy week with a Migraine every day. During this trial time, I still had a few cold nights without power because of the hurricane, we had a snowstorm before the power was even restored and this was still a very stressful time.

Those triggers are easy to identify and track. For me, it’s harder to identify the not so obvious triggers such as some foods.  Did you know that food triggers can trigger a Migraine up to 48 hours after you consume the food?

The My Migraine Triggers^TM app has the flexibility to add in the foods I eat so I can track them on days I don’t even have a Migraine to see if they may be a delayed trigger. It’s easy to add foods or anything I might want to track.

I can add the foods I eat and track other possible triggers by putting in a new entry every day and answering the question 'Did you have a headache?' with the answer 'No, I did not'.  I can track the foods I ate that day, barometric pressure changes, temperature changes and really anything I want because of the app’s flexibility.

By entering a comment to this post or my previous post, you will be entered into a drawing to receive one of two Excedrin^® Migraine Relief Kits. Winners will be selected at random when you enter any family friendly and non-commercial comment to my blog post. This kit contains the following items that can help manage some common Migraine triggers or exasperating factors:
• Sleep mask
• Noise cancelling ear buds
• Branded stress ball
• Herbal compress
• Branded water bottle

The Excedrin^® Migraine Relief Kit giveaway winners will be announced in my post the first week of December when I review the My Migraine Triggers^TM Mobile App.

What’s your Migraine relief story? Everyone is different and we all find our own way of trying to deal with our Migraines. Share your story and knowledge of how you treat your Migraines and you could win $5,000. All of the prizes, details and official rules can be found on the Excedrin^® Facebook page.


Did you know that less than one-quarter (22%) of women surveyed find their current tracking method effective in managing Migraines?

Besides foods, weather, stress and sleep patterns like me, what other things would you want to track to help you or someone you know try to manage their Migraines?

Disclosure: I am an Excedrin^® Migraine brand ambassador. One iPod Touch to test the app was provided by Novartis Consumer Health, Inc., the makers of Excedrin^® Migraine; my journey for a migraine-free experience is my own.

Sandy Migraines

In our community, we hear how difficult it is to handle weather because of barometric changes, but this past week has probably affected millions of Migraineurs when hurricane Sandy came rolling through the upper east coast of the US.

Besides barometric pressure, there are other things that can help us with our Migraines. Some of these things we have to be prepared with ahead of time while others I don’t know if we could ever be prepared to really deal with them.

The biggest factors that I can think of right now are food, if you have food triggers, and light if you are light sensitive and need to deal with alternative light sources. I sit here typing on battery power and a borrowed internet supply while under a few blankets and listening to my husband snore away as he cannot use his CPAP machine right now.

I have a lantern that I must hide behind something else so I don’t have the light directly shining in my eyes. If I dared to put sunglasses on, I wouldn’t be able to see anything at all as it would be way too dark. This often makes me wonder if I will ever become normal again as far as lighting is concerned.

Before the storm, we tried to prepare the lighting and lantern situation as much as possible. I have to say, almost a week into this blackout, and the lights seem to be working fine except that I find I cover them up either with a blanket, my hand or any miscellaneous object I can find so the direct light does not affect me.

We needed to make sure that I had some nonperishable foods available around the house that would not trigger me which basically rules out any canned foods. While I am at home, I do have some special granola bars, PBJ (but I can’t have too much or it will trigger) and other small things, but these do grow old very quickly. I also have to make sure I do eat or I will trigger. I am definitely not complaining because things could be a lot worse. I have a roof over my head, food to eat and everyone I know of is safe. Last I heard, they anticipate having our power restored midweek.

Where I want to give my biggest and unexpected kudos as a way to deal with hurricanes to is to my place of business. I’m not saying that because I’ve someplace warm to go to everyday or even charge my batteries, but they have done some very big little things that have helped employees which have also helped relieve some of the strain from my Migraines.

Last week I didn’t need to worry about lunch for most of the week as they provided that plus I could pick things I could eat.  Last week and this coming week, I can wear jeans so I don’t need to worry about cloths as much as normal. I had a place that I could go to, to take a nice warm shower every morning before work.

On the bigger picture and beyond managing my Migraines, I just have to add that my company has not only donated a very, very generous amount to the hurricane, but they will be matching employee donations too.

They have also opened up their facilities this weekend to family members so they can take warm showers, have a place to use the internet, watch some TV, use a gym, a game room (they must have brought some things in because I don’t think we normally have one!), have a bite to eat (the café will be open) and so many other nice amenities.

During the week, my team let people go out during business hours to get gas. That might not sound like much, but the gas lines here are like they were back in the ‘70s. I hope they will start easing now that more people are getting their power back; it has been ridiculous and just another stress on top of a very taxing situation.

Despite trying to be as prepared as I could be, it was not a fun Migraine week. I managed the best I could and did go to work every day as most of my team was affected by the storm. I still believe the Botox helped during this time as it kept some of the clarity I don’t think I would have had otherwise. I’m still trying to figure out Botox, but hoping to get a better handle on it when things go back to normal in my life when using it.

Food and lights were the triggers I thought of that we could prepare for ahead of time since these are things I deal with all of the time. What other triggers can you think of and how would you help prepare for them ahead of time?

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. 

Me Time

During Migraine Awareness Month in June, we had a blog topic for each day. One of the topics I wrote about was titled “Tea for Two”. We were supposed to write about who we would want to sit down to have tea with for the purpose of explaining Migraine disease to them so they would truly understand it.

The person I chose was me. Although I haven’t formally sat down with me yet, I’ve had many deep conversations with myself lately. One of the things I said made me realize that I need to have more 'me time' no matter what else is going on around me. It may be tougher one day compared to the next, but I have to find that time regardless. If I’m not any good myself, I won’t be any good for anyone or anything else I try to do.

This reminds me of a post that Dr William Young of the Jefferson Headache Center wrote on the Alliance for Headache Disorders Advocacy (AHDA) website where it is especially important for chronic Migraine patients to find a third-space. Migraine disease is so consuming, and has such an impact on family and work relations, that finding this third-space sanctuary becomes an ever more critical inoculation against becoming overwhelmed. It doesn’t matter what that third activity is as long as it involves something that is meaningful to you.

I’ve been a little overwhelmed with things this summer, but I feel like I’m getting more balance in my life as I go back into my third-space which gives me the ‘me time' I was missing for too long. One of my third-spaces is reading what my blogging friends have to say and writing about my Migraine journey. Another one of my third-spaces has always been sports. I’ve had a tough time with this one for the last couple of years, but I have actually managed to play two volleyball games this month and look forward to playing as many as I can this season.

What is your third-space? Does it give you the balance you need in your life? If you don't use your third-space right now, what would you like to do?

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?

MRI Trigger

Have you ever had an MRI trigger a Migraine? My son's Migraines have been under great control for the past two years, but when he had his MRI, it triggered a 2+ day Migraine.

Of course this brings on my worst fears - that his concussion will have triggered more Migraines to come his way. I can hope and pray that they haven't made things worse for him like a few other people I know. My son's neurologist ordered the MRI after his cognitive test to return to sports was lower and slower than his baseline test was and he still had too many symptoms a week after his concussion.

When we discovered he had Migraines, we were luckily able to identify his Migraine triggers pretty quickly. He has been doing a pretty good job with his sleep schedule, staying hydrated and taking his supplemental vitamins.

Let's face it, it's tough to discover you can have some debilitating Migraines during your freshman year of college. He never realized, nor did he tell me that he was experiencing some headaches in high school. He would just take some Tylenol, get a little rest and would be mostly good.

The 'headaches' he got his freshman year of college were much different. I don't know if it was because of all of the additional pressures he was under plus all of the triggers he was faced with like he really hadn't been before. I didn't find out about his headaches until his 1st semester finals were about to start and I wouldn't be able to have a good talk with him until after he came home which is when we really started addressing them and educating him.

His freshman year was also difficult because his roommate was also a night owl who would pride himself on staying up all night and sleeping all day. He is really a great guy who comes from a really nice family, but you can see the huge Migraine trigger for my son who needed his sleep. He did work it out that second semester and reduced the number of Migraines he was getting tremendously.

It's been three weeks since his concussion. He is much better than he was, but has not been cleared to start the step progression back to competition yet. Their spring game is this weekend which he will spend the time cheering on his team. I am glad he was not pushed back into the game where he could risk more or even permanent injury to his head and grateful that he is bright enough to know that his mind is not worth risking to play in a few more football games.

Have you ever had an MRI trigger a Migraine?

Now We Have a Plan

"I’ve never met anyone like you before. I never would have imagined someone could relax while being active."

But, he doesn’t understand me. I know he’s not right for me and I’m not going to take it anymore! How should I break up with him? 

We still have our next ‘date’ set up, but I won’t be going to it and will be letting him know about it soon. I still believe in biofeedback (BFB), but I know Mr BFB is not the right guy for me; especially after our last session.

I like to take things to the extremes. You know, like real life scenarios. So when Mr BFB said that I probably warmed better with my eyes open because I was a visual person, it opened up a whole new world of experimenting for me. This past week I tried warming while doing some activities I find relaxing. I’m sorry, I don’t find listening to soft music with my eyes closed very relaxing. This allows my mind to wander to all ends of the earth. No, not very relaxing at all for me.

I like to relax by thinking. Not the everyday intensive work problems thinking, but figuring out little things. Dorky me found I could warm very quickly by keeping busy with things like playing little games, reviewing notes, updating/coding spreadsheets, talking to Fido and reading different blogs to name a few things. I practiced the other good BFB habit things while keeping busy like not crossing my legs, having good posture, not crouching my shoulders and breathing with my belly while making sure my thermometer hand was always in the right position too. I stay as relaxed as I could while staying busy doing things I enjoy doing.

I told Mr BFB that I watched the finger thermometer shoot up very fast. I couldn’t believe how suddenly it increased. This was when he said that he never met anyone like me and never would have imagined that keeping busy would have warmed anyone. He rolled his eyes and made a comment about how he could never find it relaxing to code an excel spreadsheet. What can I say; that’s me!

I’m still trying to sort out many things that transpired during this visit. I was getting annoyed that he didn’t seem like he was going to do any BFB again during this session. So, I brought in a little competition. I mentioned that when I received the call from the Headache Center and Dr Psych recommended BFB that he mentioned how he performs his first BFB sessions with his patients. That he does mini tests in five different areas of BFB and then will work on the areas they feel need the most work.

Mr BFB immediately sat up and became interested plus gave himself away as not listening to different things I had been talking about. I know I’m boring, but he’s supposed to be a trained listener. He kind of lost his composure a little and probably needs to practice his own BFB a little more. 

He started drilling into me; what five areas? What five BFB areas did he do during your first session with him? Can you remember the five areas you did with him? After regaining his poise back while finally listening to how I was answering his questions, he started to ask if they ever mentioned the five areas that they test. Well how the heck would I know? I came in there telling him I didn’t even know how to spell BFB! 

I think he had a cheat sheet or something on his clipboard as he became all proud of himself for figuring out what he thinks the five areas of BFB my Headache Center covers when they do BFB with their Migraine patients. Then he told me that NOW WE HAVE A PLAN. Now we have a course of action. He would always talk about these other things we would try since the first week I was there, but he never brought anything out. And now he’s going to copy what he thinks another place does for their Migraine patients when he already ‘cures’ most of his Migraines patients?

There’s still more…

He kept talking about how BFB will train us to open up the vagus vein (that’s what he kept calling it) which would allow the blood to flow to the extremities like to the fingers and feet and away from the Migraine. Many of his patients never have another Migraine after they learn this again. Most of his patients are ‘cured’.

I couldn’t let the ‘cure’ word go. He actually hadn’t used that word during any sessions and only used it when we talked on the phone to setup BFB. During this session, he used the ‘cure’ word and the other ‘c’ word a few times! 

I said Migraine is a genetic neurologic disease and I believe that stress is an exasperating factor where it may exasperate some of the other triggers we have, but it will not trigger a Migraine on its own. 

He immediately started repeating his spiel about the vagus vain (you had to see what he kept demonstrating with his fingers next to his neck every time he talked about this) and then started throwing in a few ‘causing’ a Migraine. Of course when I started talking about no ‘cure’ and genetics being the ‘cause’ he would throw it out even more. Well, that conversation was not going to go anywhere quickly either.

Yes, still more to come…

He asked how my stress levels have been in the last two weeks. I told him stress has been nothing out of the ordinary except that my oldest son was diagnosed with a chronic pain condition. (I’ve never mentioned to him that my youngest son has Migraines too.) His response was to basically start going over his own chronic pain conditions - on my dime. Then, I think he caught himself again and gave me helpful hints on what my son can do to take care of himself. My son has an excellent doctor who gave him very good advice on what he needs to do.

One more thing!

He would like me to come into his office with a full blown Migraine all of the time. I think this is so he can show me that he can ‘cure’ me. It really set him off when he found out I had a six earlier in the day and was only around a three while I was there. He also doesn’t like my numbers in my BFB journal since many of his other patients have 8s, 9s and even some 10s. He feels my numbers don’t reflect the same numbers that are in my Migraine journal which I ended up showing him too. He ended up accusing me of underrating the intensity numbers I keep in both of my journals. I admit I don’t know how to put my pain to a number scale, but I believe I am consistent for me and think that is the most important thing to do. 

So you see my last session with Mr BFB was a very odd session. I will not go back to him. Just thinking about him brings on more stress than BFB is supposed to relieve. This whole thing sounds kind of counterproductive.

I do want to learn more about BFB and I am very disappointed in all of the techniques I didn’t learn. It was so hard to find him and I actually found him through two different sources. I also had problems with other people in the field not calling me back, but I am better off without than with him.

Have you had any interesting sessions you’d like to share? I almost feel alone in my experiences but then also wonder if I may have instigated some of it too…

Migraine Biofeedback – Wires Crossed?

I’ve been having a tough time trying to figure out this biofeedback stuff and actually had Mr Biofeedback (BFB) ask me during our third BFB session if I thought I should discontinue the hand warming. I started off my second session by telling him I thought I was wired backwards and we spent the much of the third session talking about how he thinks my wires might be crossed too. Niiiice.

How would you feel if you ended up baffling your Mr BFB During my last two visits with him, he even ended up looking up different things on his iPhone that we were talking about. We didn’t do any BFB stuff during the third visit; new or old stuff.

In general, so much has been going on lately. I finally finished the increase of my medication. Everything went fairly well, but now that I am done, I am starting to feel some different side effects. I even increased the meds at a little slower rate than my doctor told me to although he did stress that slower was better. It took over a month and a half to increase the med. It’s hard to keep slow when all you want to do is feel better. But, slower is better.

Anyway, I’d been practicing the hand warming between the first two BFB sessions and didn’t have any real issues while warming. I usually hit well into the 90s and even raised my temperature by 20^o a couple of times - without clenching my hands, without putting my hands on my thighs or anything else that would artificially raise my hand temperature. My hands were open to the fresh air.

I pseudo joked to him that I thought I may be wired backwards at the beginning of my second session, but didn’t elaborate any further than that. However, I did mention that I noticed I would warm a lot faster after I opened my eyes He reviewed what I was doing when hand warming and didn’t see that I was doing anything wrong either. He commented that if I warmed better with my eyes open, that I must be a visual person. Yes, I am very visual.

During this second session, we did the skin conductance at the same time we continued the hand warming with the other hand. He said I’ve been doing a really good job, but I still felt like something was missing; even after that second session.

The skin conductance was kind of strange too. After he hooked me up, I guess I didn’t quite grasp what was supposed to happen. I could see all of the pretty pictures on the laptop screen and the music was blasting away. I even felt like asking him to turn it down a little, but he seemed to be enjoying the results as I was trying to absorb everything and understand what was going on so I didn’t say anything.

To try to show me what was supposed to happen, he asked me to stress myself out. I don’t know about you, but I spend a lot of time trying NOT to stress out and had a very hard time doing this. Do you know what finally stressed me? I got stressed because I could not stress out. I know, weird. I never said I was normal.

It was actually kind of cool to see how the skin conductance was ‘supposed to’ work. The pictures faded down, the music became quieter and some lines appeared at the very bottom of the screen that I did not see before stressed. These lines measured heart coherence and maybe some other things. I asked him about it. He understood what it was, but he either had a hard time explaining what it was or I was jumbling everything up as he was talking. I just remember his hands going off in all kinds of directions similar to when he was explaining that parasympathetic was better than sympathetic.

It was real interesting to see the difference in how the skin conductance looked and sounded between when I was relaxed vs stressed out. He also mentioned that it can take some of his patient’s months at three sessions a week to achieve the results I had with my first hook up. I’m not really sure how I should interpret that statement, but I can read it so many different ways.

My homework was to continue working with my hand warming. As I journal my results, I also try to jot down any silly comments, thoughts or observations I have while doing it. This helps refresh my memory and spark conversations while Mr BFB reviews my journal.

The Headache Center I go to does a complete evaluation of their new patients which includes different psychological profile tests to help get a more complete picture of their patients so they can treat the full patient and not give them medications that could be bad for another condition the patient may have that they may not even have been aware that they had. In between my second and third visits with Mr BFB, I received a call back from Dr Psychologist from the Headache Center. He gave me some of my results and also recommended biofeedback.

Well isn’t that just dandy! What’s a doubting girl like me supposed to do? What would you do if you had a Psychologist on the phone who just recommended BFB and you had some qualms about it? I picked his brain of course! He was happy to hear that I had already started BFB, but I don’t think he expected me to question him too. Oh well.

I gave him a high level overview of the two sessions with Mr BFB from a BFB perspective. I told him where I was having a hard time understanding BFB and wanted to know where or how he saw the benefits.

He explained that everyone has different approaches of going about BFB. Although Dr Psych’s approach is to give mini evaluations in five different BFB areas during his first sessions, it’s also ok to try the different BFB areas one session at a time like my Mr BFB is doing. Dr Psych likes to see which BFB areas get a good hit and then focus on those areas. This was enough to keep my attitude positive about BFB because I do still believe there are things I can get from BFB.

The third visit was nothing like I expected. It started by going through my journal. I told him that while I was warming at work, I had an incident that snapped me into sympathetic mode. But instead of my temperature going down as I would have expected, it shot right up. I watched it go up. I was definitely in fight mode as I could feel my eyes get bigger, I wanted to attack and I was not in a happy mood. I ignored the troublemaker and he eventually left. But why would my temperature go up?

I gave him another scenario where my temp darted up and another one where it plummeted when it should not have. We immediately started talking about these scenarios and other things that will make my finger temperature rise. This was when he said that maybe my wires were crossed. He also said that maybe I should stop the hand warming. I was totally confused at this point. I actually feel that hand warming is beneficial.

Sort of under his breath, he also pseudo joked that he thought I really might be able to pass a lie detector test. I know that during the first week we talked a little about BFB and lie detector tests, but I really don’t want to take one and don’t have any objective to falsely pass one. I just want my Migraines to get under better control.

Hand warming forces me to take a step back. It makes me relax. I don’t do enough chilling out. I have learned new techniques, but I still have a hard time staying relaxed for sustained periods of time. Yes, I go to extremes sometimes like trying to warm in the middle of work, in the middle of a loud office, in the middle of a very stressful day, but how else am I supposed to get better at relaxing? I believe in learning more under extreme conditions than giving up on something altogether that may have some merit.

Can you see my confusion around BFB? It looks like there are still three other BFB areas that I need to go through, to see if they may work better for me or maybe I can take something away to use as a new tool or technique to help bring my Migraines under better control.

What biofeedback stories do you have? Did it help teach you to chill out? Did it get you off of your preventatives? Reduce your preventatives? Did your BFB person look up stuff on the internet during your session?

Can’t Wait to be Cured!

As I was doing some of my research on biofeedback, I talked to one of the prospects who does biofeedback for Migraine patients. He made the comment that he loves when Migraine patients call him. That took me by surprise so I told him I hear of people running away from Migraineurs as they don’t know how to treat us or get frustrated by their lack of results. He became excited again and explained that he has great success with many Migraine patients and even cures some!

Alright, alright, I know there is no cure for Migraines. It is a genetic neurological disease for which there is no cure for yet which is why we need more research. By the way, have you and everyone you know signed the petition to urge Congressional hearings on the impact of Migraine and headache disorders yet? We only need about 20,000 more signatures! Please sign and help spread the word.

I know I need to give biofeedback a fair shot for different reasons. Although I’m apt to say I need to try it because my Migraine specialist ordered it for me, the truth also is, like I was telling my sister the other week, is that I don’t know how to relax. I know I have an outward appearance of being relaxed, but I feel like I’m always on the alert. Besides if it could possibly help me control some of my Migraines, then it is worth the try. However, I do have an alternate motive too. I have planned my first real vacation in a very long time and I want to be able to relax during this busy vacation where I am going to want to do everything. 

I enjoy watching other people even if they are in the process of observing others themselves. As I started my first biofeedback appointment, it was funny to watch Mr BFB (Biofeedback) while actually viewing me. I sat in the chair and naturally crossed my legs. By his reaction, I knew I shouldn’t do that, but it was also exactly what he wanted me to do. I played along and besides, I wanted to cross my legs so I kept them that way. I figured I would let him teach me my lesson when he was ready. 

I had some paper and a pen with me so I could write everything down to review again later. He said when people get tense, their hands and feet will get cold. He asked how I could warm my hands if I couldn’t rub them together or sit on them. I had to find another way. 

He wants me to purchase a stress thermometer so I can practice hand warming every day at home. He proceeded to strap his stress thermometer onto my finger. After about 30 seconds, we got a baseline hand temperature for me. 

Mr BFB said if the base hand temperature is 90^o F or above, that we would need to warm our hands by 2^o. If it is below 90^o F, then we need to raise our hand temperature by 5^o. He mentioned that some master type people, who typically meditate or do yoga, can actually get their temperatures up to 97^oor even 98^o. 

He let me know it could take some practice to warm our hands by the 5^o in the beginning, but we would get there even if it didn’t happen during this first session. I honestly wasn’t very concerned as he kept talking and my hand temperature kept plummeting. 

When I do my daily hand warming, he wants me to keep track of the time, the baseline temperature, incremental temperatures and any other significant notes. These notes can be if I’m listening to a CD at the time of the hand warming, if I’m experiencing a Migraine at the time, the beginning Migraine level, the ending Migraine level, if it is a particularly stressful day and just anything notable.  As all of this was going on, my temperature kept going down more.

He tried some type of stimulator on my brain since, of course, I had a Migraine going on. This stimulator has two stick like devices that are held on opposite sides of your head so that the sticks are in a straight line as if they went through your head.  It is moved around your head in this same fashion for short durations of time.  Do you think this is a bit freaky as I do, that he tried this stimulator on himself to show me how it was done and displayed great pleasure? 

Anyway, this stimulator was weird and cool at the same time. It would shoot electrical like currents through your brain. I could see flashes and hear crackling noises while feeling little jolts. I was just trying to visualize it hitting the Migraine. He said these currents are supposed to retrain the neurotransmitters. Ok. By the end, my Migraine was knocked down one level. I think he was disappointed that it wasn’t gone.

Mr BFB told me he loves when his patients come in with full blown Migraines so this machine will zap away their Migraines. Sometimes they will even go down to a zero. I am really trying to keep an open mind with everything and still need to understand all of this. Even if I can learn little things to help, it should be worth it, right? I think so. 

A lot of people with Migraines have pain that starts in their necks. As far as I know, mine never start there. As soon as he used these stimulators on my neck area, the whole stimulator thing stopped working even after he switched it to a higher level. He thought it was weird that the higher setting did nothing for me after that either.

Next we went back to the hand warming. Guess what the first thing he mentioned to me to do was? Of course uncrossing my legs! Then he told me about sitting up straight, making sure my hands were below my heart, that my hands were comfortable, in the same position each time I warm my hands and that my shoulders are not tensed up. As soon as all of that was done, my hand temperature started going up. He made other adjustments and the temp went up further.

Mr BFB did more talking. He was chatting about sympathetic and parasympathetic parts of the nervous system and how we want to use the parasympathetic part more. When I looked it up after, the sympathetic part is “fight or flight” while parasympathetic is “relaxation or slowness”. So yes, parasympathetic makes a lot of sense when you’re trying to relax. 

Once the pain starts, the sympathetic system goes into overload. Supposedly, biofeedback can lower your heart rate, decrease muscle tension and help you gain control over pain. Success in biofeedback sessions is measured by changes in intensity levels, volume, or speed of signals from machines they use, when thoughts and actions result in the action in the change of involuntary responses (like hand temp or heart rate).

Since my hand temperature kept going up, he made a joke that maybe he should tape his voice for me to listen to when warming my hands on my own. After I giggled, I said that maybe writing with the wrong hand helps too. That immediately threw him off where he apologized and said he should have strapped the thermometer to my other hand, but because of the way I picked up my pen and paper with the ‘wrong’ hand he assumed I was the other handedness. I didn’t look, but I’m sure that would have increased my temp even further. We couldn’t switch hands at that point; it would have thrown off this whole experiment.

Next, we went over stomach breathing. This is where if you put your hand on your stomach, you should be able to watch your hand go up and down while your chest, and definitely your shoulders should not move at all. This is how babies naturally breathe and only learn to breathe the wrong way as they get older by watching and imitating us stressful adults. As I did my stomach breathing, my hand temperature kept going up.

All in all, my temperature went up over the 5^o from my baseline mark which would have been significantly higher than the lowest recorded temperature during the session. 

As Mr BFB was wrapping everything up, he reminded me that he wants me to practice warming my hands every day. I had to ask if this ‘hand warming’ was just the teaching of my body to relax which is where the blood flow would end up going down to the tips of my fingers and toes where in the end, would warm them up. I think he liked that correlation. 

This was my first experience, my first session and my observations around biofeedback. I don’t know if biofeedback will help reduce my Migraines or decrease their intensity, but I do know that I need to learn to relax and get some of my stress/tension levels under better control. If biofeedback will help me do some of that, then it can be considered somewhat of a success. Next session will be skin conductance.

Have you tried biofeedback? Did it work for you? Did it help reduce the number of Migraines you experiences? Your intensity levels? Did it help you relax? How long ago did you try it? Do you still find it useful today?

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?

Embarrassing Migraines

I have tried talking about something I have done on many different occasions. It's something I do when I have a Migraine, but I find it kind of embarrassing and hard to talk about. Most of the time I can control myself, but at other times, I think I just don't want to because as embarrassing as it is, in some way, I sometimes felt a little better too.

I know I get very frustrated when I have yet another Migraine, but I get such a potty mouth that I could put a truck driver to shame. There are times I can pretty much control my language, but at other times, I just have a hard time doing that. Maybe I just won't try so hard to curb my naughty words any longer.

Today I read a post by Dr Alexander Mauskop in his Headache News Blog. His post was about how Swearing helps pain, to a point. He said that a study showed that for most people, swearing reduced their pain and increased their heart rate. However, if you frequently swear, you may have less of a pain relieving effect. I guess maybe I am not so alone with my little issue.

I still find it very embarrassing to have such a dirty mouth during these times, but maybe I won't beat myself up as much as I have been if it's also a way that has been helping me. I guess a little bad word usage is ok as long as I don't overdo it and as long as I am careful of where I am and who is around.

I have finally confessed another one of my dark Migraine secrets. Do you use profanity during a Migraine? Do you do anything f'n embarrassing before or during a Migraine?

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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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Insulted at Church

I'm usually pretty easy going and can simply blow things off, but I'm finding it hard to not be personally insulted by something that happened in church today.

While attending mass for the past few months, I've been sitting in what they call the 'votive' room. This is a little room at the back of the church which doesn't have any doors, but is open to where mass is performed. They went the way of electronic candles a long time ago, so there is no smoke or anything funny coming from the 'candles'. It is not the 'cry' room where all of the families with very young, vivacious children go either.

Even though I wear a hat in mass every week, I still sit in the votive room because of my light sensitivities and because some people love to bath themselves in smelly stuff before going to church. This room has really been a win-win solution for me. There are a few regulars who also 'hang out' in the votive room to watch and listen to mass. Some of the people are a little older, some have walking difficulties and we even had someone with an oxygen machine in there once. The most we've had in there at one time was about five people although it will comfortably fit about seven.

Today there were only three of us; a married couple and me. They've been regulars in this room for the last few weeks although they used to sit in the last few pews before settling into the votive room. They don't know I sit in that room because of my sensitivities, but they always see me wearing my hats. Fortunately or maybe unfortunately, today was a day I could smell everything. No, none of those natural smells.

There is a point in our mass when we shake hands. They kissed and then took turns shaking my hand. As mass progressed, she put some lotion in her hand and shared some with him so they could both put it on. That looked so cute as it was transferred by what looked like a little hand shake or hold between them.

Weeelllll, due to my heightened sense of smell today, I could tell it was not hand lotion that they put on. I have a sensitivity to the smell of those hand sanitizers and today it hit my head like a brick wall.

If I am the only other person who they shook hands with, how could I not be personally offended when they use a hand sanitizer right after shaking my hand? What should I do next week if faced with the same situation?

Should I start wearing a face mask as well as my hat every week while sitting in the votive room? Should I sit in a seat that is a little further away from them in this pretty small room? Should I just bump their fists like the athletes do? Should I just wave to them? Should I leave the room before and avoid the whole handshaking situation all together?

I really don't need to shake their hands nor do I think they really want to shake mine. If there are other people in the room, they are going to do the 'right thing' and shake the other peoples hands. I could embarrass them by asking them to use the hand sanitizer outside of my 'sanctuary'.

I've got a week to think about how I want to handle this situation. I really don't want to embarrass them or make them feel uncomfortable, but I don't want to smell this in my haven especially on days I can smell everything. The problem with speaking to them is that they usually get there as mass is starting and scoot out as soon as it is finishing so it would be hard to talk to them. I really don't think it's appropriate to discuss anything during the mass. I could always hand them a note. At least they would know the result of their innocent (yet insulting) action has on me and then the ball would be in their court.

How would you handle this situation? It just happened so I haven't really given it much serious thought yet. I'm sure they have no idea - yet.

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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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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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