Thursday, March 25, 2010

Long distance Migraine Appointment

The day I returned my son back to school from spring break is the day I had my last Migraine doctor appointment. He's really been doing terrific with his Migraines this semester. It's incredible how much a little education can help someone get better control of their Migraines.

I found out at the beginning of finals last semester that he has Migraines. At that point, he was getting two to three Migraines a week. Granted it's a very stressful time for a college freshman just learning the ropes of college life, dealing with freedom and finals.

After he came home for winter break is when the education began. We had lots of talks and he read through a great Migraine book. He actually wants to reread this book when he comes home for the summer now that he has a better understanding of what is going on within himself. We did even more talking on the way back to school from spring break. Since he returned for this semester, he has only had one big Migraine and that was in the beginning of the semester.

I talked a little about my son during my doctor's visit. She commented on how wonderful genetics are and other things I'll go over. After we were done, I texted and teased my son that he just had his first neurologist visit. His response: 'How'd I do?" and wanted to know more about 'his' visit. He's such a cutie.

After my neurologist asked how old he was, she asked if I had started him on any Migraine supplements. I told her I hadn't because I didn't talk to a doctor about that yet and I was leery about starting him on even just supplements. She laughed because she said she knows how much research I've done on Migraines and laughed even harder after I told her that I bought them, but had him holding onto them at school since I am not really around him and wanted to see how he would make out with doing the other things we talked about first.

I told my neurologist everything we have done around his Migraines and where he stood at that point with them. The biggest preventative he does is gets to bed earlier then he did last semester. He also makes sure he stays hydrated and is eating regularly. I think the getting to bed earlier is the toughest part for a college freshman but he definitely knows that it has been the biggest key to helping his Migraines.

I feel bad for him with his first taste of freedom and having to limit himself when he should be stretching in every aspect. His roommate even boasts when he stays up all night and then sleeps all day long. Don't get me wrong, I wouldn't want my son sleeping in all day and am so proud of him that he is taking this Migraine stuff as seriously as he has been. He knows the pain and other discomforts when he doesn't take care of himself.

My doctor is a Migraineur. As we left her office and walked down the hall, she commented that she thought her son was showing signs that he was going to get Migraines too. She said her son was sleep talking and sleep walking. I told her that I'd never heard that before and she confirmed that it could be a warning sign of a future Migraineur. My son was a sleep talker.

The last time I talked to my son, I discussed some other signs in children like stomach aches that go away before you can see a doctor or are able to tell what they were really from. He said he used to get unexplained stomach aches and he seemed to put all of these pieces of a puzzle together.

We talked about how early he remembered getting headaches. He guessed it would be his junior year of high school but that he would have had no way of knowing they were Migraines until he started reading the book and could put all of him symptoms together. I had no idea as he never said anything. I guess he not only inherited my Migraines, but my ability to cover up and hide 'headaches'.

Saturday, March 20, 2010

Next Step Migraine Doctor Visit

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

Luckily, the visit ended up going very well.

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

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

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

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

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

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

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

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

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

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

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

Saturday, March 6, 2010

Want Migraine Food Triggers - Really?

A while back I said I had a little more to say around Migraine food triggers. I've read a lot about the elimination diet, food triggers and some comments on the subject that left me feeling troubled. I needed some time to digest this before giving my opinions on the subject since these comments were said by other Migraineurs. This is still a sore spot for me as I have many food triggers as well as other Migraine triggers.

The Migraineurs who made the comments don't have food triggers. Their common belief seemed to be as long as you don't eat your food trigger, you're good to go and that they wanted food triggers. Basically, you shouldn't have any Migraines if you don't eat your trigger foods. Here are some of the Migraine food trigger comments that I found irksome:

>> "if you have several Migraines a week, it's probably not from food" -- How can you say such a blanket statement? I have several Migraines a week and I have food triggers. I found a lot of triggers while doing the elimination diet which reduced my Migraines down to several a week.

>> "all foods trigger a migraine isn’t that much different from saying no foods trigger a migraine" -- I went to a new Migraine 'specialist' after completing the elimination diet. His only comment to me about the elimination diet was that 'sometimes you can find too much on the elimination diet'. This indicated a couple of things. He doesn't believe in the elimination diet, like the Migraine doctor I came from, and he believes that people who go on the elimination diet, make up food triggers. I did my elimination diet very methodically and believe in the triggers I found.

>> "I'd love to find a food trigger because then it would be under my control"

>> "I'd hate to find a food trigger because then my Migraines would be my fault"

>> "I’m starting to think the food trigger thing is nonsense" -- Come on, get real! I can attest that foods really can trigger Migraines.

>> "some of us wish we had triggers that could be avoided" -- Really? Without having food triggers, you're still getting many Migraines. Would you really want to mix foods to avoid in with everything else you currently do to try to not get a Migraine?

Do you have any idea how hard it is to manage Migraine food triggers sometimes?

I did a full Migraine elimination diet instead of a piece meal one where you eliminate one group at a time and add back the foods from that group one at a time. Other people will eliminate one food and add that back in on an as needed basis. Whatever works for you is fine, but I'm glad I went the full route as I found a lot of good Migraine food triggers while doing it.

When I added back my foods, I listed everything about the food; right down to the ingredient level. I can't imagine doing this any other way. Don't get me wrong, I can think of several things I would do differently if I were to do a full elimination diet again, but going down to the ingredient level is not one. Can you believe I've read where some people don't think the ingredients matter?

As an example, it's real easy to say and to stay away from mayonnaise or hot dogs if they are your food triggers, but what if it's more than just those foods? What if it's the soy or sodium nitrate in those foods? All of a sudden, you can see how many more foods you would need to avoid than just mayonnaise or hot dogs. Probably so many more foods than you realize. Plus, if you know it is those ingredients, maybe there are other ways you can have mayonnaise or hot dogs? Can you get mayonnaise without the offending ingredient? Can you get hot dogs without preservatives? For me, the answer to both of these questions is yes.

I can understand blaming someone who knows chocolate is a Migraine trigger for them yet they insist on eating that afternoon chocolate bar only to end up with a Migraine. I can understand rolling your eyes when someone purposely eats a known Migraine trigger and then whines about their Migraine. I have little tolerance for that too, but it's not always that easy to avoid your food triggers. I wish it was.

The way I see the comments above? I'd rather not have Migraine food triggers. It would be so much easier to manage my Migraines without them. To not worry about everything I eat and what ingredients are in all of the foods I want to eat. I still have Migraine disease whether or not foods trigger them.

If you are getting as many Migraines as you are getting now without food triggers, just imagine how many more you would have or how much more stuff you would need to avoid and STILL get the same amount of Migraines that you are getting today.

Do you still really wish you had food triggers you could avoid?