Friday, October 23, 2009

Migraine Teleconference This Sunday

This coming Sunday will be another Migraine Teleconference hosted by Megan Oltman. Megan's scheduled guest is Elizabeth Loder, MD, chief of the Division of Headache and Pain of the Department of Neurology, Brigham & Women’s Hospital in Boston, Mass.

In order to attend the Teleconference, you must register ahead of time. It's real simple and the Teleconferences are all offered free of charge. For more information and to register, visit Megan's Free My Brain From Migraine Pain site. You will also be given access to recordings to many of the great previously held Teleconferences you may have missed.

Join the party and don't miss out on the fun! The more the merrier. Register now for the next call on Sunday, October 25th.

Forty Year Anniversary Year

I just realized that today is probably as good of a day to celebrate my forty years of Migraines as any other day of the year. Forty years of Migraines. Ugh...

Although I wasn't officially diagnosed until a little over three years ago, it will still be forty years ago sometime this year when my mom brought me to the doctor who told us that I only had headaches and there was nothing he could do about them.

Do you really celebrate years of Migraines like you do birthdays or anniversaries? I don't think that's something I really want to celebrate even though I have learned so much from having Migraines and from the Migraine communities and not just about this disease.

In one way, Migraines have taught me to ask more questions; to stand up for myself; to stand up for others; to write my congresspeople; to question doctors; to partner with doctors. One of the hardest things to learn is to say No. No to foods that you love to eat; to foods you want to eat so you don't hurt someone else's feelings; to someone you have already said Yes to, but have to turn down last minute because of your health reasons. Both of these lists could go on and on.

In my undiagnosed years, I got real good at pretending everything was great and most of the time I didn't even realize when I had a Migraine. I know that sounds funny and hard to believe, but I do remember days of holding my head together because the pain was so bad where nothing I would take would touch the pain. I also remember thinking that I couldn't imagine what Migraine sufferers must feel like if just headaches were like this.

I didn't know much about Migraines and every time I thought about looking them up on-line, it was usually in the middle of one of these really bad headaches which wasn't a good time to look up anything on the Internet. I guess I can count my blessings that I had a bad incident at work where I really needed to find out what was going on and finally, finally looked it up.

The three plus years since my diagnosis almost seem like a lifetime. I have gone through a compilation of doctors, but plan on settling in on my current doctor for a while longer. I have not only learned more about me, but have grown in ways I never thought possible. I wish I had more time these days since I still have so much more to learn about Migraines and medications.

On the other hand, I've already grown so much as a person; is forty years long enough to have had Migraines? I think I'm ready for the Migraines to go away now or am I missing some other positive things I can still get from them? Happy Anniversary?

Sunday, October 18, 2009

Dealt with It

I still play on some team sports when I can. Not in any competitive leagues any longer, but the teams in these leagues still like to win. I like to jokingly call them old ladies leagues, but some of the younger folks take a smiling offense to that terminology. It's one of the few ways I get my exercise in.

I had a blast this year on my new team. I switched teams after I was having problems with some smoking going on where we were competing. When I mentioned something to our person in charge, I was told to 'deal with it' and she's not even a smoker. You see, smoking is a Migraine trigger for me. I have enough environmental triggers around that I don't need other people's bad habits around triggering a Migraine.

I originally tried taking the upper road and decided to try to communicate with my team leader about what Migraines are since she may not have had any experience with them, but she completely shut me out.

Not too many people know this, but I actually dealt with this in two ways. The first way I dealt with it was that I switched teams. We (some friends moved with me) ended up having so much more fun on our new team than we had on our previous team even before I was told I needed to deal with it.

The other way I dealt with it? I wrote several emails to our township parks and recreation director about banning smoking in our parks. It has taken almost a year and a half, but it is scheduled to come up for a vote before the end of the year. Honestly, I couldn't believe that smoking was still allowed in public parks where kids are running all over the place.

I never used to be so bold or at least on this level. In some ways, I think realizing I have Migraine disease and learning that I have to take matters into my own hands has helped me deal with things in other areas as well. I think once you learn to take doctors head on (pun intended), that you learn you have to take control of other areas too; not to mention that hopefully this will help eliminate another area that I am faced with a Migraine trigger where with any luck I won't be forced to chose between something I enjoy doing and ignorant people doing something they enjoy doing which infringes on the health of people in the parks.

Let's just hope the vote passes.

Migraines and Football again

As a parent with Migraines, I think you always fear you will pass this disease down to one of your children. I guess you don't know at what age your child could show signs of Migraine disease, but every year that goes by, the better you feel about the possibility that you may not have passed it down.

I mention this now because I read an article that was posted by Diana Lee on Somebody Heal Me called Arkansas Football Player Who Suffered Stroke Had History of Migraines which brings up these fears in me all over again because it had to do with a college football player who had a stroke after having a Migraine. You see, I have chronic Migraines and my son plays division one football. Although he doesn't currently feel Migraines, I know people who started having issues with Migraines while in college and others who started having problems after bumping their heads. He has shown some of my sensitivity to light and I hope that that is all he ever inherits.

I do trust in his abilities on the field, but there was one 'kid' on his team this year, who also plays in my son's position, that hit his head so bad during a game that he was carried off of the field and will not be back for the rest of the season and probably not for the rest of his college career. He could not even remember some basic things a week after his head injury which is very scary especially since academics has to come first out of this whole college experience.

My heart aches when I hear about young kids (and really anyone) having Migrainous strokes or are injured beyond being able to do something they love that especially had the added bonus of helping them further their education.

This article is a great reminder to us all that when we do have Migraines or head pain, that we really need to take care of ourselves. Here is an article about Status Migrainous - The Basics written by Teri Robert and another article about The Significance of a Bump on the Head written by Nancy Bonk. Nancy is one of those people who really did not start experiencing chronic head pain until she fell and hit her head.

Please take care of yourself and do the right thing.

Sunday, October 11, 2009

Migraines, Football and Driving

I was hoping things would be better by this season, but they are definitely different which was to be expected given everything has changed this year.

Last football season, my son was a senior in high school where by the end of the season I noticed I would get a Migraine after all of his games. I know some of the triggers were the sun if it was during the day, the lights if it was at night and the loud bands (sorry band parents). I would wear a hat, sunglasses, would not sit near the band and drink plenty of water especially on the hotter days.

This year has a few more challenges. He is playing ball in college and I'm noticing even more triggers besides the increased noise level. I'm taking the same precautions that I did last year, but I'm sure part of the reason is that the high school was smaller and I was surrounded by my friends.

I'm finding the many different smells are affecting me that weren't there last year. The perfume, the hotdog smell and even the BO. I think every year I keep hoping my preventatives will help, but I'm not there yet and actually started a new medication this month. At least I have a competent doctor this year so hopefully I'll be where I need to be next season.

There are other obstacles to consider now as well which I never thought of before. His games are not as close to home as his high school games were plus I've been made aware of some common sense things that I really should have known all along.

Luckily my eyes were open to some possible ramifications if I were to drive while Migraining by a couple of well researched articles written by Megan Oltman titled Migraines and Our Driver's License and Migraines & Driving Don't Mix. Of course taking drugs and driving would be something you would think not to do, but since a Migraine is more than just a headache, it really would not be a good idea to drive straight home if I can't put off a game induced Migraine.

His school is not in my town, county or even the same state so I've had to build in extra time or even an overnight stay into my football day if I want to attend his football games. I know I always have the option of not attending, but if your child was involved in a high contact sport could you not attend? I didn't think so because neither can I.

At this point, I work harder to find the right preventative and to try to prevent the football induced Migraines. I have to go to his games because I want to be there for him no matter what plus it gives me that opportunity to see him without feeling like I'm crowding his college experience or at least that's what I tell myself. Plus when I come to his home games, we go out to dinner which he definitely likes to do.

Saturday, October 10, 2009

Is this My Life?

I have a friend (I know that old cliche, but this really is my friend) who has been having a hard time recently with his Migraines. He has had a particularly difficult time with his preventatives lately as well as this is a very busy time for him at work.

Needless to say, his butt is getting kicked on a daily basis from different sources. He recently confided in me, since I have Migraines too, that now his wife is starting to hassle him. Instead of understanding what he is going through at this time, she said to him, "Is this my life"?

What the heck? He thought she understood what he was going through yet she asked him if this was her life? What about what he is going through every single day? Does she think he likes 'what he is doing to her'? I mean, does she think he likes popping pills that give him daily side effects which will zap his energy and make him feel icky where he has to decide whether the treatment is better than the disease? Does she think he likes being in almost daily pain? Does she think he likes failing at work because of the pain and the drugs that are supposed to help him? Is this her life? Or is this his life?

I did send him some information that I hope he will share with his wife and help them both. The first article is Migraine and Headache Education for Those Who "Don't Get It" which basically has materials that we can share with people who don't understand how debilitating Migraines and headaches can be.

The other article Migraines, Headaches and a Disturbing Pattern is to help us deal with those people whose negativity and lack of support are sapping us of our will and energy to manage our Migraines and headaches.

I'm sure she didn't 'sign up for this', but do you really think he did? So let me ask again, is this her life or is this his life? Right now, it's their life and would be much better for both of them if they could go through it together.

Saturday, October 3, 2009

Go to Work or Stay Home?

I came across an article on Somebody Heal Me by Diana Lee titled Migraines Cause Lost Productivity Whether Employees Come to Work or Stay Home which talked about an article about Going To Work With A Migraine? New Study Says Work Productivity Is The Same As Staying Home. This study was presented at this year's International Headache Congress in Philadelphia.

I found these statistics in the article from the study very interesting: The prospective study of 509 Migraineurs resulting in 1,527 Migraine attacks found that 28% of workday Migraines resulted in absenteeism while 11% resulted in a full day of work lost, 5% led to a late arrival, and 12% led to leaving work early. Presenteeism, staying at work with a Migraine, was observed in 62% of workday Migraines.

First of all, I will admit that I am usually a presenteeist. This is something I have struggled with almost everyday. Even before I realized that my just headaches were Migraines, I knew there were times I just couldn't function as well as I should. What was I supposed to do? Call out for just a headache and almost everyday? And because I had always worked through my just headaches, could I really change my patterns now?

I'm sure this is one of the roots of my Migraines, but given my situation, I find it hard to make another choice on a consistent basis especially since I bring in the only income for my family while I have two children in college. I am trying to work on doing what is best for me and my family. I have called out a little more, but it scares me every time I do and still makes me wonder if I would have been better going into work. Some days probably yes, other days definitely not.

Part of my perpetual cycle is because I am sort of part of the presenteeism statistic because when I know I am not putting in a full day of work on some days, I don't feel like I can leave until I have put in my honest day's work. How can I leave until I have worked a real day for my employer? It's also easier to work later because it gets much quieter and my head actually feels like it gets cooler or is not on fire and settles down more. I don't want to do the wrong thing for my employer and I don't want to do the wrong thing for me.

Do I go to work or stay home?

This is why I work so hard to find the right doctor so we can work together to find the right preventatives. We will get there. We have to. At least I wouldn't be asking myself this question as often.

Friday, October 2, 2009

Another Medication Change

When I saw my doctor last month, we had another really nice visit. I ended up changing my meds again because the side effects became too much and actually became worse after I started titrating down from the beta blocker before it got better.

In the beginning of my visit, I caught my doctor off guard. I bluntly asked her how often she got Migraines. I think she was anticipating my next question and answered both at the same time. She said she gets them about three times a week and doesn't currently take a preventative. She said she will typically get them when her stress level is high and only got a Migraine one time because of a food. My doctor spoke about how she was on Topamax at one time and how much she likes her maxalt.

We continued to talk about when to take our triptans. I confessed that I often have "the struggle" about whether or not I really need to take a triptan this time or as Megan from Free My Brain wrote about the Second-Guessing Game. My doctor said she understood, but that the sooner we take it the less side effects we experience, the quicker the relief and the better off we are. She even confessed that she has had this internal struggle in the past and knows from experience that the sooner we take it, the better off we will be.

At the end of my visit, I didn't mean to say anything, but as she was writing my six scripts, I held them up and said something to the effect of how sad it was that there were so many from this visit. She put on this empathetic face and said something to that effect. I told her it really wasn't that bad.

I went on to tell her that to me these represented ideas, hope and a new path to try. She smiled because she was happy when she thought of the new medication to try after I needed to stop the beta blocker. I just thought she was cute (not really the way I ever anticipated I would be describing a doctor of mine).

I still feel like she is full of ideas and will continue to have them for a while longer. I also know that she knows what we go through which can only help. I am still so glad I found her. Such a big difference from every other doctor I have gone to for Migraines!

AHDA HeadNotes blog

There's a new blog in town. The AHDA HeadNotes blog has been brought to us by the Alliance for Headache Disorders Advocacy (AHDA).

This blog will provide us Migraineurs a place we can go to get the latest information on legislative issues and share our thoughts about advocacy issues.

Migraines and Healthcare Reform

The National Patient Advocate Foundation (NPAF) has been working hard to stay on top of what's going on with health care reform legislation. Did you know that currently the Senate Finance legislation will be slowly phasing in the insurance reforms?

Teri Robert wrote a nice article on Migraines and Health Care Reform which explains how this phase in period won't even begin for some groups until 2017 and can take five years from then to be fully implemented. Under this current structure, preexisting conditions and annual and lifetime limits on coverages will not be completely eliminated until 2022. That's 13 years from now!

How can you help?

You can write your Senators telling them what we need from them. There is a letter already written for us which we can send as it, edit at will or just add a little bit to it. The system will automatically send it to your Senators and it only takes minutes. It can be found on the NPAF Website.

I personally don't know what needs to be done with health care, but I know something needs to be changed. When my son when to the ER to get three simple stitches (it was off hours and no where else to go) put into his chin and our out of pocket expense was over a thousand dollars, I knew something needed to be changed. With Migraines, things aren't as clear cut or as simple as with stitches.