Migraine

Hi
I suffer from hemiplegic migraine and they are very severe. I lose my speech sight and cannot use my left hand and leg.

I have been prescribed topamax but after reading the side effects i have not started taking them.

I have three children 14 9 and 2 and i worry that i will not be able to function.

even though when i ave an attack am very ill it only lasts 4 hours, but i can not care for the baby when i get one.

but if i take the meds how long will i be ill for as i have no support network to help.

need advice please

thank you

jayne

Hello and welcome to the forum family, Jayne!

Okay. Let's see.

The first thing to remember is not to read too much into a side effects list. Side effects are potential, and the majority of people either don't experience them, or experience mild ones that don't interfere with things enough to require getting rid of the med.

Condidering your migraine attacks are enough to stop you in your tracks, preventing them should be a big priority. If you don't take your preventatives, you're inviting them to just keep occurring. I'm sure it's extremely hard to function and take care of your family during an attack. The goal with preventatives is to get that control back, by working to prevent attacks and lessen the severity of the ones that get through.

How long any med takes to really work is variable, according to our individual chemistries, dosages, and the like. Generally, a fair trial of a med is considered to be three to six months. For most people, that's how long it typically takes to kick in, build up to a therapeutic level, and work most effectively. From there, it's a matter of maintaining.

Hopefully, with an effective preventative, you'll have fewer and fewer attacks. Also, they will hopefully be less severe, and of a much shorter duration. Topamax and other preventative meds aren't going to abort the process, though, and stop the migraine in it's tracks.

I'm going to give you our info on Topamax and hemiplegic migraine.

Hemiplegic Migraine Basics

Topamax profile

We've had quite a few people have success with Topamax, with few side effects that were intolerable. If you're overly concerned about it, though, there are all kinds of other meds used as preventatives, and perhaps others wouldn't seem so daunting to try first. You'll find a list here...

Medications, Including Preventatives

Hi Jayne,

Welcome to MyMigraineConnection. Droolie, as she is commonly referred to, gave you fabulous information. If I can add my two cents worth that would be great.

If you are not being treated by a Migraine/Headache specialist, you might want to look into seeing one. Since Familial Hemiplegic Migraine (FHM) is a rare form of Migraine disease it is best to be treated by an expert, and that would be a specialist in the field. We have a few from the UK on our patient recommended list you can see HERE.

Recent progress in genetic testing for FHM and Sporadic Hemiplegic Migraine (SHM) have be made. That information is HERE

I think we have a few other members from the UK who have HM, and have some from the US as well. We'll try and give you all the support and encouragement we can.

Hang in there and keep us posted, ok?

Hi, Jayne, welcome to the forum. We're glad you found us.

I hope you will take a look at this thread to "meet" some other forum members with hemiplegic migraines:

hemiplegic migraine - new head count?

Keep asking whatever questions you have, OK?

I'll echo what Droolie said about not letting lists of POTENTIAL side effects scare you off from trying a preventive. As she said, most people don't have intolerable side effects. "Potential" means just that: potential.

You'll see the worst cases on the internet. People whose preventives, (including Topamax) work don't have the need for the support found here; they're getting on with their lives.

It's the people whose preventives aren't doing a good job that you'll see here, and we'll also be the ones with the worst side effects. But remember that most people don't get side effects, and nobody gets ALL of them.

Seeing a specialist is a good idea. I started seeing one in November, and I'm seeing real improvement. I was on a standard preventive treatment, but my neurologist and I had run out of ideas. My specialist changed my strategy, and I'm having more pain-free days, and my base level of daily pain has decreased.

Gretchen in Mississippi

Hi Jayne,

You and your doctor are the only ones who have the right information about your case. Following his doctors orders is imperative when starting a new treatment plan.

I am making a few assumptions about you from your post, so please correct me if I am wrong. One, you have only very recently (less than a year) been experiencing these new and scary symptoms that have lead to you being diagnosis of HM. Two, you have not had much experience with taking many medicines. Three, you have been doing alot internet reading to figure out what your new diagnosis means.

Topamax and all other medicines are not to be taken lightly. All medicine including herbs have side effcts. We count on the effects of medicine to help us, otherwise why would we take them?

I have had Chronic fatigue syndrome or as it's known in the UK M.E. since 1990. In the early days of my illness my parents took me to doctor after doctor. Each doctor poked and prodded me, and eventually said we can't find anything wrong with you, here's some anti-depressants, maybe you would benefit from some pyhsical therapy.

I had a "nervous breakdown" back in 1999 and was hospitalized in the psychatric wing of our local hospital for about a week. Up until that hospitalization I had refused to regularlly take any medicines--especially anything in the category of "anti-depressants". My absolute loathing of all medicines came from growing up with father who put all faith in his latest and newest pill. He was forever taking medicine but it didn't seem to fix anything.

I had absolutely no desire to rely on medicines for my health. I only changed my attitude about medicine after the psychatrist at the hospital pointed out to me, that to do nothing would be a downhill slide towards sucide--a fatal disease.

I have taken many medicines since 1999. I have no intention of going off of my medicines because my life is far better with them than without.


My reading of your post tells me you are overwhelmed. Its very hard to raise children and deal with a terrible illness--I have a 12 year old and a 14 year old. My children have never known me when I wasn't sick.

May I ask you a question? If you don't try and take the medicine how is anything going to change from the status quo. You already aren't able to take care of your baby for hours at a time, so if you don't try Topamax is anything going to change?

Follow your doctor's advice.

Mary in NM