Migraine

I've been posting to this site for a few days now, and kind of forgot to introduce myself. I see several folks here from the old site I used to post to. Anyway, here's me in a nutshell.

I have familial hemiplegic migraine. I have not had a symptom free day since 1999. I have been on disability since early 2000. I'm 41 years old, married (for 20 years), and have a 13- and a 10- year old son, neither of whom remember me before I was sick. My father and grandfather were affected by similar illnesses, but far less severely than I am.

I have had seven hospitalizations, several of them quite long (as in, a month), and about a zillion ER trips. I had been hospital free and ER free till a month ago, when I did a planned hospitalization to completely redo my medication regimen and break up my downward slide, which has been going on for the past year.

My severe attacks include a whole lot of neurological symptoms: paralysis and numbness of my left side (extending into my throat muscles so that I temporarily can't talk or swallow); confusion; alteration of consciousness; aphasia; rotary vertigo; regular dizziness; nausea (that's what usually lands me in the ER); irregular heartbeat; temperature spikes; pain (of course); visual aura; feelings of unreality; and all the sensitivity to light and sound that you might expect.

My migraines are extremely refractory to treatment. I've been on every class of medication available, in combination generally. I'm currently on about seven preventives, and I've got a new set of abortives. Unfortunately I can't safely take the triptans (although Amerge has been a miracle drug for me in the past) because my brand of migraine carries a stroke risk. I'm not real happy with my current abortive regimen but I'm giving it time because my new preventive regimen hasn't had a fair shot yet (I'm waiting another month to evaluate it).

My life is pretty restricted compared to 10 years ago. I do leave the house when I can. I take my kids where they need to go when I can. I have hobbies at home, and I swim for exercise at our nearby pool. I miss my job - I was a clinical psychologist (Ph.D) and loved my work.

I'm having a rough time of it since I left the hospital two weeks ago, and am back to these forums because there's really nobody else who understands what post-hospitalization is like. I am afraid of wearing out my local support system. My husband is a totally supportive and wonderful guy, but these last two years have been horrible for him, and he's pretty burned out on hearing about symptoms. I understand this actually, and am trying to confine myself to brief reports so our entire relationship doesn't revolve around my illness.

I'm usually pretty tough, and have gone through a number of "making peace with the illness" stages during this whole time, and I'm clearly in the midst of another one. Not so much peace going on right now! I'm hanging on - but it's by my fingernails at the moment.

That's me in a nutshell.

Here is your official welcome Lynne,

Welcome to MyMigraineConnection

Please forgive me if I'm repeating myself, are you working with a real Migraine specialist, not just a neurologist who calls himself a specialist.

I bet you already know this, but when dealing with a rare form of Migraine disease like FHM, an expert such as a Migraine/headache specialist is who we want to treat us.

If these links are repeats ignore them, ok? Migraine specialist and Hemiplegic Migraine - The Basics

We look forward to hearing more from you.

Lynne--

Consider this my official welcome to the forum. I really feel for you! One of the things about this forum is if I'm feeling a little down, there usually is somebody else in such a crisis that I feel like I need to cheer up and reach out! So-o-o-I'm reaching!

What you are going thru is so, so, difficult! But you're really handling it well, much better than a lot of us could. I can understand not wanting to put more pressure on DH with symptoms, etc., but I'll bet he'd be glad to sit with you for a few minutes every now and then and just hold your hand. Ditto with the kids. Mine used to do that and it really gave me comfort.

I'll be praying for you and I'll call my mom to add you to her list. She's pretty effective!

Tracie

Hi Lynne! Welcome to the forum family (officially)

I'm so glad you found us and have been posting! I'm not sure if you've been given this link but I'll give it to you just in case:

Migraine preventive medications: too many to give up


Welcome (offically) again!!

Thanks for introducing yourself, Lynne! Here's your official welcome! I know you've already gotten a great amount of support and information here - this is the best place on the web to be for both. You may also want to invite your DH or your kids to come poke around on here - we have a lot of family members who do that, and I know it's helped them to both understand and cope with migraine disease. The moderators work hard to keep this place family-friendly.

My heart really goes out to you. I suffer from regular migraine without aura, and have since my early teen years at least (possibly longer) - I wasn't diagnosed until I was 20. I'm now 24. I'm going through my second bad cycle with migraines, and both times the pain has become constant, and come with chronic nausea and dizziness. It's awful to live with the daily symptoms - as I'm sure you know. So far I've managed to keep my full-time job, just barely, and really I wonder most days how I do it (if not for my DBF I don't think I could do it).

Anyway, we're glad that you found us, so keep on posting and let us know if you have questions, ok? We're happy to help.

Thanks for the welcome!

Nancy - thanks for checking on the doctor situation. I have that in hand - have an honest-to-goodness migraine specialist (courtesy of the Diamond clinic). I also try to keep up with the literature on FHM. But thanks for checking.

I'm hangin' in there. Just went for a very slow but relaxing swim, which was just what I needed. Cabin fever and inertia were getting me down. Now I have to force myself to rest!

Lynne

Welcome Lynne!

Looks like Nancy and Laura gave you some links to start with.

If you need anything else, please let us know!

Welcome aboard, Lynne!

I think you're coping beautifully. I'm so impressed that you're giving your preventives time to work before discarding them. And I'm glad you've got a specialist.

I'm so sad that you had to give up a career because of your head. I had to do the same thing. I had to give up a successful law practice. I'd love to go back in some capacity -- but not in the high-stress, managing-partner, model mom, Superwoman kind of thing. I melted down after 10 years of that. I've never gotten my head under good enough control for long enough to go back. But, like you, I miss it.

I love swimming, too. I'm walking these days.

Gretchen in Mississippi

Hi Gretchen!

Thanks for the warm welcome. I'm in the middle of a mental battle about whether or not it was a brilliant idea to change the meds -- but it's only my fear talking!

You can relate to the work thing - here's the crazy thing I've done. I have still been doing my CEUs and have kept my license active all these years. This is the first biennium that I've actually thought about going on inactive status, but I have this wild hope that someday I'll get a good enough regimen to find a part time job, and I don't want to have to go through the messy process of activating my license.

Pipe dreams ....

I had to keep myself from going swimming today in order to pace myself. Pooh. I think I'll do some yoga in my living room later today, but I have to save enough energy to get the kids from piano lessons to swim practice.

Hope you're hanging in there. It's nice to be back on the forums. I forgot how helpful this kind of fellowship is.

Lynne

Hi, Lynne, welcome to the forum. We're glad you found us. I'm slow to greet you because I was on vacation when you came on the scene, but that just means I now have increased energy for a very warm welcome.

Take care, and let us know how we can help.

Hi Lynne,

I too am a little late, but Welcome, so glad you are here!!

Dar