Migraine

Well, today is my Mom's birthday.

It's a tough day for me...My Mom passed away 5 years ago. She was a wonderful person. She always took time to help a friend, no matter how tough her own life was. She stayed married to my father for 50 years, despite the fact that he was an alcoholic and drank like crazy for about 20 years of their marriage. She knew me better than anyone and I miss her terribly.

I've talked about her in the past, so I'm sorry if you're reading this story for a 2nd time...

My Mom was also a very severe migraine sufferer. Back when she was at her worst (in her 20's and 30's), the doctors really didn't know much about treating migraine. Her GP gave her HUGE amounts of Elavil (amitryptline) for many years. He also prescribed Fiorinal and Tigan as her only treatment options when the migraines got so bad she couldn't struggle through. Her GP never once checked her liver functioning--in over 20 years of use of these meds.

Had he looked at some blood work, he might have realized that my Mom had a genetic problem that is tied to liver disease (alpha-1 antitrypsin deficiency, or Alpha-1). Had he tested her blood, he most certainly would have noticed her elevated liver enzymes. Unfortunately, these problems weren't discovered until it was far too late.

My Mom (who never drank, never did a recreational drug, and followed her doctor's instructions to a "T"--never EVER exceeding recommended doses of ANYTHING) had cirrhosis of the liver. The scarring of her liver got worse and worse over a few years. Her liver specialist could not believe the amounts of meds she took! And he couldn't believe that her illness went on for so long without her GP recognizing the symptoms.

So my Mom got sicker and sicker over a few years. She threw up, her belly became bloated with fluid, she was often too weak to move on her own. She was on the transplant list for a while, but then she got too sick to withstand the operation. Finally, after a night of terrible pain, she told us that she didn't want anymore medicines. We took her home with hospice care. She died about 5 days later.

My Mom died because her doctor did a really lousy job of treating her migraine disease. She died because she was from a generation that didn't question the doctor's recommendations!!

Just before her death, her liver specialist told me that her genetic problem alone would not have been enough to cause her cirrhosis (it's a long story, but her particular gene defect typically doesn't make patients ill like she was). Her migraine meds (at such high levels) were named as SIGNIFICANT contributers to her illness.

Unfortunately, after her death I learned that my sister, 2 nieces, and brother all have inherited Alpha-1 issues, too. My sister and nieces are all severe migraineurs. Because of the Alpha-1, their doctors are very careful about what meds and how much they prescribe to treat their migraines...

So every year on my Mom's birthday I think about how much I hate migraine disease. And I hope and pray that I will never have to see another person I love die like that. And I try to not be angry at her doctor for taking such lousy care of such a wonderful person.

And I say a prayer that today's doctors know enough to keep this from happening to any other families...

jenny

Jenny, thank you so much for sharing your story here. I can't imagine how difficult that must have been for you, to watch your mom get so sick before she passed. I'm glad that you feel comfortable enough to share this with us.

I'll give you some hugs.

Jenny, I'm sorry about your mom. At least your other relatives know now what to look for and to be careful about medicines.

Jenny,
Thank you for sharing your mother with us. You are such a strong, loving and caring woman. It's clear where it came from.
Cindy

It truly is a tough birthday, the birthday of a deceased person you loved. Take care of yourself and grieve hard and well!

It's not my grandma's birthday I remember, it's the day of her funeral, because we buried her on 9/11. Constant reminders everywhere you look. To me, she'll never truly die because we keep this sad anniversary alive, as we should.

Thanks for "listening" guys...and for all of your kind words.

jenny

I'm so sorry you had such a sad day.

If it's any comfort, my internist insisted that I come in for blood tests every 2 or 3 months to check my liver while I was taking Depakote, which can cause severe liver damage.

My new specialist took blood for a baseline reading at my first visit. I'm not sure how often she'll test it, but it's a comfort.

And I make sure to have my annual physical, which BCBS provides free.

Doctors know much more now. So do patients.

Gretchen in Mississippi

Jenny - Thanks much for sharing this story which brought tears to my eyes. I don't quite know how to say this but as much pain as I know you feel in remembering your wonderful Mom and her terrible disease, you really inspired me, too. You summed it up so well when you said

quote:

My Mom died because her doctor did a really lousy job of treating her migraine disease. She died because she was from a generation that didn't question the doctor's recommendations!!

I can only hope that we all do our part to question, educate and push for research so these kinds of awful stories don't happen to the next generation.

- megs

Hi Gretchen and Megs,

I always try to remind myself that things are better now than they were when my Mom was fighting her migraines. But sometimes I wonder--Will I find out one day that all of these meds I'm taking will hurt my body like they did hers?

I also KNOW that I question everything my doctors say. I certainly do not blindly trust them with my health! I ask about medication alternatives, possible side effects, drug interactions, etc. And I make them run labs on me every three months. I've had genetic testing and, thankfully, I am not a carrier of the defective gene. But I am still extremely careful of the medicines and supplements I put into my body.

Thanks for taking the time to respond to my post girls!

jenny

Jenny,

Thank you so much for sharing your mom's story. It really touch my heart and my soul and brought tears to my eyes. For me, it was perfect timing. I came to the folder to post how an ER doctor treated me really, really, bad. I was crushed and wanted to give up, until I read your mom's story. I can't thank you enough for sharing it. It could not have come at a better time. The last few days, I have felt so lost lately with the meds, and the side effects I am having. I read your mom's story yesterday and cryed and thought alot. I couldn't even post yesterday, because it effected me so much. It is giving me strengh. So, I am so sorry you lost such a beautiful person in your life, she is still touching other. I mean that from my heart.
dDar

Hi jenny,

I'm sorry you've had a rough time. Migraine disease has so many layers, I don't think any of us realized them all. It's almost like an onion....

You're mom sounds like she was a wonderful woman. She certaily produced a wonderful child!

Jenny,

My heart and my hugs go out to you.

Thank you for sharing your strength and your mom's story with us.

All my best to you

Jenny,
Thank you for sharing your story with all of us! It is truly an eye opener and reminder to be vigalent in our own care. I know I will be keeping a closer eye on things, especially the Depakote.

Im sorry you have had such a rough go of it the past few days. Just try to be comforted by the fact your story may save some lives!

BIG for ya hun!
Tawsha

Hi Dar, Nancy, Laura, and Tawsha,

You all are so terrific! Thank you so much for taking the time to post these responses--you all made my day!

Dar, I'm sorry you are fighting such a hard fight right now! My Mom would be so happy to hear that her story gave you a little boost! I sure hope things start getting better quickly for you. You really need a good, long break! LOTS of hugs:

Nancy, you're so sweet...Thank you.

Laura, thank you for all of the hugs and happy wishes!

Tawsha, you're exactly right! We all need to remember that we shouldn't take any medicine or agree to any medical procedure just because a doctor says it'll help! We need to do LOTS of research and be sure we feel comfortable with all aspects of our care! My PCP sometimes chuckles when I ask him to check my labs AGAIN (we're close, so I let him get away with that ). I really don't care what he does, just as long as he orders the blood work!

I'm feeling much better now. I think I allow myself that one day to feel crummy and then tell myself that it's time to move on with things. My Mom would be very disappointed if I sat around feeling sorry for myself all the time! She would think that was an awful waste of time!

Thank you all again.

jenny