Migraine

Hi I am new to this forum from Nebraska. I was just diagnosed with Hemiplegic Migraines a few weeks ago. I thought that I had a stroke, or MS, but no it seems that I have HM. So anyway I am still trying to figure out how to deal with these nasty things. I was having about 4-5 "episodes" if that is what you call them-- a week. Neuro put me on Topamax and a pain med for the pain in my left arm and leg. I have tingling, and muscle pain that lasts anywhere from hours to days prior to the actual episode, then a few days after. I also have episodes with no warning, which is very scary when out away from home or in a car! the Topamax is helping but I don't believe that it is the correct or only drug that will work for me--can I take others with it? I now have about 3 episodes per week, which is better than 5 but not great. I am still trying to work, but not an easy task. I am a teacher, and have 4 kids all still at home ages ranging from 15 yrs, to 9 years, one of them with special needs. I forgot to mention that we live in a rural area and specialists are hundreds of miles away, and with 4 kids, well you get the picture. Anyway I am looking for any help and suggestions you can offer to get me pointed in the right direction. Thanks in advance.

Hello Trene and welcome to the forum family! It's great to have you here!

When you have a moment please stop by the Start Here Folder for information and guidelines about the forum.

A great article to help you get started is:

Learning About Migraines - Where to Start

Another article I think you'll find helpful is:

Hemiplegic Migraine - The Basics

Since you have a rare form of Migraines, your best bet is to see a Migraine Specialist. I understand not having one in your area because I travel from Virginia to Texas to see mine. He's been able to reduce the number of Migraines I get and also reduce how severe they are and how long they last. It's worth every penny I spend on the airfare and hotel.

I'm glad your doctor put you on Topamax and it's been helping so far. Your right, there are over 100 medications available for Migraine prevention:

Migraine preventive medications: too many options to give up!

Here's some information on Topamax you can take a look at too:

Topamax Profile

A great tool to use is a Migraine Diary. It will be useful to track triggers, the effectiveness of medications, and any patterns to your Migraines and headaches.

Hopefully, I didn't overwhelm you with to many links. I just wanted to make sure you got a good start here. You've come to the right place for information and support. Most importantly, you're not alone!

I hope to see you around the forum and if you have any questions, just ask.

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

It looks as though Laura did all the work, and I just get the pleasure of giving you a warm welcome!

Glad to have you with us.

Trene, Welcome. I'm so sorry to hear about your migraines.

I grew up in Omaha but have family all over Nebraska. I know you said you are in a rural area. How far are you from Omaha or Lincoln? Many of us here on the forum travel very long distances to get to see migraine specialists. Once you see one, they usually try to help you minimize the number of times you have to travel to them by doing phone consultations, etc.

I know Omaha has a headache clinic that is supposed to be really good. I don't know about Lincoln but there might be more available there as well. I sure hope you can get to a specialist. They really make a huge difference in most cases.

Take care. (We won't talk about the game this weekend! )

:Flower

Hi Trene, I am another sufferer of HMs. I wanted to welcome you to the forum. I'm curious about how you were diagnosised, since I wasn't dxed until this year. My own journey to dx was a long 17 year progress. I credit this forum with the information that led to that dx.

Mary in NM

Thanks for the welcomes. I live about 6 hours west of Omaha.(by North Platte for anyone who knows NE) I am probably closer to Denver. I really dislike Denver and don't know my way around and tend to get lost there So I would rather go to Omaha. My son has a lot of health problems so I am used to getting around in Omaha. Money is an issue for us as it is for everyone. But I can't continue like this either. My husband is having a difficult time adjusting to all of this and at this time doesn't see the need to spend a ton of $ to see a specialist if I can go to North Platte to a Neuro. I would probably have to have hi take a day off of work to drive me since I don't feel comfortable driving when I don't know when of if I will have problems.

Mary as far as my diagnosis maybe I was lucky if you can call it that. Which I would say I was, gosh 17 years is a long time to wonder. I suppose I started to have symptoms for 6-9 months, I ignored the beginning tingling, numbness, ect. But when my vision started going thats when I got scared. I was having left side weakness tripping dropping things the Neuro and Internist thought I had MS, or a stroke. But all tests came back fine. When the Neuro said migraine I said no way "just a migraine" does this to a person" boy was I wrong and have become educated! It has been life altering, and I have a lot to learn that's why I am her talking to all of you. I really like the Neuro I see, but don't condiser him to be a specialist.

Hoopsky---

I forgot you're right we won't talk about the game this weekend. My husband is a die hard Husker fan and boy was it a LONG evening. He didn't even watch most of the second half.

Trene, we have a Significant Others Only folder your husband would be welcome to use. It would give him privacy to vent his feelings and to ask any questions. Only SO's, Teri Robert, and Nancy Bonk go into that folder; we hosts are not allowed. If he's interested, have him email Teri at the address in her forum signature.

Hi Trene,

I too have Hemiplegic Migraines (FHM). I've had them for about 3 or so years now. At their peak, I was having "episodes" (yes, thats a good name for them... I've often used that name to describe them to other people myself) every day of the week with a really bad day or two packed with 2 "episodes" (the really bad exception to the rule thankfully.. not the norm). Yes, they are nasty beasts aren't they?

As far as meds. go: One of the first (and hardest) things that you will need to come to terms with, as will anyone else dealing with Hemiplegic Migraines, is the fact you can't (and shouldn't) expect instant results from the medications you are prescribed. The drugs have to build up in your system, have to pass the blood-brain barrier, and have to modify a genetically encoded mechanism that is functioning wrong due to it having been encoded wrong (or compensate for said malfunction). This can take weeks to months to accomplish depending upon the drug and mechanism.

As far as Topamax goes, many people have great success with Topamax, I suspect an equal amount do not. It is a powerful drug with a strong side effect profile. Be sure to follow doctors orders when slowly stepping up dosages. Going up in dosages too quickly can lead to adverse side effects that would have otherwise not occurred, and may cause you to drop Topamax from your therapy before it's really had a chance to help you. I can't stress that enough. I have had two experiences with Topamax. My first med for Hemiplegic Migraines was Topamax, but it was prescribed by a neuro who both had little experience with HM nor Topamax. He had only connected the two with what a Drug rep had told him via telephone (he told me as much as he was prescribing it to me, but I was desperate at the time, and went for it against my better judgment). He failed to step up the dosages correctly, and I was hit with some pretty major side effects early on that forced my initial experience with Topamax to be limited to around 3 months. I later changed to a specialist clinic and have come full circle back to Topamax. This time, while steping up the dosages correctly, have had minimal side effects, and have noticed a nice decrese in my HM "episodes" (both in severity and frequency). Still early in treatment with Topamax, but it is holding promise above all other drugs I have tried so far. Again, I reiterate my point from above, you have to be patient (and I know it is the hardest thing to do especially in the middle of an "episode"), but you do have to be patient.

Now.. sorry for the long post Hopefully that will help a bit! I truly feel your pain in more ways than one! I too still try to work, have two kids (ages 7 and 2) and trying to minimize the impacts of the "episodes" of your episodes on your family and job can be hearbreaking. I sometimes think these are harder on them than they are on me. Especially realizing that my 2 year old daughter has never seen me when I've been "normal".... that practially kills me everytime I think about it... also gives me the motivation to keep on going to find something that works to make me better.

Good luck and keep us posted on how Topamax works for you!

- Ross

Hi Trene,

Welcome to our group. I too have HM. You will find several of us here as well as great information.

My story:
I'll give you the Reader's Digest version on my story. I'm an 11 year migraine sufferer. In July however, my migraines accelerated to daily, severe, and quite different with all these neurological problems. On August 20 I was hospitalized for 5 days with seizures. Since that time, I've been struggling with ataxia, confusion days, and stammering and speech problems. In April I lost my intellect, which has not returned. I use a walker about 4 days a week.

Medicines:
Once they switched my CCB from Procardia (I also have Prinzmetal Angina - cardiac vasospasms) to Verapamil, my migraine pain significantly decreased to a dull headache most of the time and my auras also decreased in severity. Then changing my seizure medicine from Tegratol to Depatoke has helped to reduce the frequency of my confusion days.

I wish you all the best. And welcome to our group. Tonya