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?

Not Covered – Keep Looking

I know I need to do the elimination diet again. I have done the diet one and a half times already and thought it was successful both times. Even with this experience and the research I’ve done, I know I need help when I do it again.

The first time I did the diet, I jumped right into it after doing some research. Since I had never done any type of diet before, I decided to eliminate everything but a few items because I never wanted to go on another diet again. I basically had the same breakfast, the same lunch and the same dinner every day until I started adding back different items into my diet one at a time. At least doing the diet this way, I had that little variety from meal to meal during the day.

I approached the second diet in the same manner. However in the process of that diet, I started having thyroid issues and decided to stop my diet midway through. I don’t know if my thyroid issues were seasonally connected or diet related. I still have another thyroid ultrasound and a visit with the endocrinologist coming up, but I haven’t made up my mind if I want to keep those appointments yet. I know how off I felt when my thyroid was out of whack and don't want to feel that same way again.

In less than two weeks, I will finally go to my new Migraine specialist and wanted to find out what I could about a dietitian before my visit as I expect the new doctor will want me to go on another elimination diet too. I’ve been trying to get as prepared for this doctor appointment as I can which includes getting ready for some of the answers to the many questions I already have on my list for him. I also want to be set to start moving forward right after the appointment.

When I looked back through my Migraine charts, I could see a sustained drop in the number of Migraines I was getting while I was on this last diet. Since I have already found many food triggers and don’t know if my last elimination diet helped throw off some of my thyroid levels, I started looking to see if my insurance covered visits to a dietitian. I could see some dietitians on my docfind list which is where I go to find doctors who accept my insurance so I thought it was definitely worth a few phone calls to find out.

I started my quest off by calling my company’s benefits department. They couldn’t tell me if a dietitian was covered so they referred me to our insurance carrier. Even with a three hundred five percent health insurance premium increase starting with my next paycheck, my insurance does not cover visits with a dietitian or even other alternative Migraine treatments like chiropractic or massage therapies. The insurance lady said that they wouldn’t even cover a dietitian for things like diabetes or obesity and that the dietitians services would be charged at a full rate; not a reduced negotiated rate.

We had already discussed that I have chronic Migraines and that I was looking to get some help if I go on an elimination diet. I know I can get a little sensitive at times, but I had to make a comment back to her about it also being important for people with Migraines to find the right foods since what we eat can trigger Migraines too. Migraines need to be better understood too.

It wouldn’t matter if my doctor prescribed a dietitian, chiropractor or even massage therapy, my insurance company would not cover the alternative service. Although they don’t cover dietitians, I did find out that they have another program I can use where I can get twenty-five percent off of the cost when visiting an approved dietitian so I ended up calling this other program for more details.

With all of our increased medical expenses and not having all of the coverage we need to properly treat our Migraines, sometimes it’s nice to find hidden ways that we can still save a little money to help us along our Migraine journey. With the food triggers I know I already have, wanting to test for additional tough food triggers and not wanting to throw other systems like my thyroid out of whack, I know I need the individualized attention of a dietitian. I also want to test tyramine as a possible trigger and can’t do that on my own.

This additional twenty-five percent off benefit was never advertised in any of our benefit literature. My own company’s benefit department was not aware that it existed or even that dietitians were not covered by our insurance. It pays to ask questions even if you don’t think it’s going to pay off. I honestly didn’t expect anything by the phone calls I made, but figured I had nothing to lose by calling.

I am so glad I made these ‘useless’ calls and found this additional hidden perk that I will most likely use in the new year. I also have the luxury of knowing that I have a discount available for chiropractors or massage therapists if that is an alternative my new specialist would like to try.

Have you found any hidden treasures that have helped you with your Migraines or at least reduced to cost of your Migraine care?

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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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Migraines and Frustrations

I’m a few days late and a dollar short to enter the April Headache and Migraine Disease Blog Carnival hosted by Diana Lee on Somebody Heal Me. I had actually started this with plenty of time to finish before the deadline and definitely before the extended deadline, but you know how it is when things happen and you can’t make that goal you set. Yes, that is frustrating too...

I realized that I express a lot of frustrations around Migraine disease. There are so many things that go on where I want to throw my hands up in the air and just give up, but I know that wouldn’t be good for anyone; especially me.

I can’t just give up on making sure I have the right doctor, trying to keep up with my disease, finding the right medication, trying to get some thickheaded loved one to understand why I can’t make every special event like I used to and the list goes on and on. I’m going to talk about my latest frustration around Migraines.

Like so many others, I’ve been trying to find the right Migraine preventatives for years now. Although there are hundreds of medications that are used and an astronomical number of combinations of these medications we can take, none of these preventatives have been developed specifically for Migraines. These had been developed for other diseases where it was discovered that they helped with some peoples Migraines.

After doing some reading around thyroid diseases, I find the Migraine medication issue even more frustrating. Why? Because it seems like for the thyroid, it’s pretty much take this medication where it mostly works for everyone and there are hardly any side effects. Wwwhat? A pill? No side effects? I may be understating that a little since I haven’t gone to my doctor’s appointment yet, but that’s what it seems like from what I’ve read and heard from people I have talked with a thyroid condition.

If that is true, that is nothing compared to going to the doctor, getting a new prescription and taking the prescription for two to three months to see if it might help you. We also have the bonus of knowing that some of the side effects may even go away after a little while. If this medication works even a little bit, we have a few choices we can make. Maybe we can increase the dosage a little more or try another medication in the same class or try another medication along with that prescription and repeat the waiting game again.

Hmmm, do you think we need more Migraine research so we can get a better medication regimen that would help us so we wouldn’t be like our own little science experiments with every new medication we need to try?

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A New Path

As I started to get a big smile, I had to stop myself. My doctor's office called me a few days after I took a blood test. There is only one reason they would be calling. As I was bringing the phone to my ear, I was thinking: Did they find something that would help me with my Migraines? Or, did they find something that would add in complications to managing my Migraines? You always say you want to find something, but do you really want to find anything?

I have had many symptoms that I would blame on many different things including age, medications, Migraines and just being a woman. Many of my symptoms fit these categories perfectly and for a long time so I really was not expecting anything but a normal blood result back - just like I always get back. Well, my TSH levels were a little high.

What this result really meant to me right now is that I would have to do a lot of heads down research on something I know little about in a very condensed period of time so I could start to make some decisions on what I need to do to help myself. Just a minute while I get a couple of sweaters and put on some lotion. Much better, thanks for waiting. One of my biggest problems is that I have been totally exhausted and have been for a while. I can't seem to get enough sleep and then even wake up feeling tired. When I am on-line, I have been known to fall asleep right in the middle of posting entries. I'm embarrassed to tell you how little energy I have to do anything especially given the amount of sleep I have been getting and that's not even mentioning how hard it is to remember the simplest things that should be a no brainer.

Do you know what? The symptoms I just complained about plus a few others that I had noticed and just pushed off toward other logical things are also symptoms of an issue with the thyroid. Wow! I really don't want to read anything into this one test. I know I will have other blood tests that I need to take, but I know my body. Many of these symptoms are not me, but I have been complaining about some of them for a while. I don't want to self diagnose, but I think we might be onto something here. Honestly, I really don't want anything to be wrong with my thyroid, but I would love to get rid of the symptoms I have and been blaming on other things especially if it would help with my Migraines; I would consider that a win-win!

Having a thyroid condition is not that unusual for people with Migraine disease. They are known to be comorbid conditions which is where two diseases are known to occur at the same time but are independent of each other; one does not cause the other. Teri Robert wrote an article on Migraine, Headache and Thyroid. In this article, Teri explains how taking into account other conditions which may be affecting us, can help improve our headache and Migraine management. In some cases, the treatment of even borderline hypothyroidism has had a dramatic affect on the response of our Migraines. In my preliminary research on the thyroid, I fit almost every symptom that I have seen listed for thyroid.

I also started my doctor searching which is one of the things I dread the most because finding the right doctor is so important. I fear a repeat of some of the neurologist experiences I've gone through in the past. I don't want to waste my time or money with the likes of any doctor that would be like some of my old neurologists, but know there is only so much I can do before I had to take the plunge to choose one.

I did the best I could and picked an endocrinologist I am ok with for a first visit. I called their office and will need to wait three months before my appointment. There are a few reasons I picked this doctor and really don't want to choose another doctor at this time. Although I want to start feeling better NOW, I also do not want a repeat of going to any of the horrible doctors I had gone to for my Migraines. I realize I am not the same patient I was with the first few neurologists, but I want to try to get it right from the beginning if I can. I know it's still a crap shoot, but I will keep trying if I need to after my first visit.

I can't wait to start feeling more normal again. Right now, that even means having my normal Migraines and trying to deal with them without all of these other symptoms. I can't keep going on with this level of fatigue or how extremely cold I feel all of the time along with the many other symptoms. I'm not really sure what I can do in the meantime to help alleviate some of this. I believe I am getting enough iodine and don't want to start increasing it even more at this time especially on my own. I guess it helps knowing that I have this new real path to go down to try to help with my overall health.

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