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Newly Diagnosed..... PLEASE HELP ME!!!!!

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Posted 1/30/2007 10:57 PM (GMT 0)
My name is Meredith and I'm 24 years old. I have recently been dx with hemiplegic migraines this past week. I have had pretty much ALL symptoms assosiated with this including the numbness, tingling, temp peralysis, meningitus symptoms, fever, nausia, vomiting and OMG the pain!!!! My doctor doesn't know what to do for me and I cant see a nero because one isn't covered under the stupid medical insurance that I have. I have a few questions PLEASE HELP ME....

1) How many people have this?

2) How often do you guys get the "attacks or episodes? and how long do they last?

3) Does this seem to be progressive?

4) With anyone that has kids........ did your kids get it? I read it's a 50% pass rate and I have 2 kids.

5) How has this effected your life style?

Thanks so much, I'm scared out of my mind right now and just need to know what to do and where to start on this.

Meredith

 

 

Posted 1/31/2007 5:34 PM (GMT 0)
Hi Meredith,

Welcome to Healing Well. I am so sorry you are going though this at the moment. I don't know if you know but Hemiplegic Migraine is quite rare, but we do have one or two sufferers here, so hopefully it will not be too long before someone comes along to share their experiences with you.

Do have a good look around this site at the resources and related sites for information and gather as much information as you can. Take time slowly to read and soak up this information. We are here to support you as best we can, please remember we are sufferers of all sorts of headaches and not health professionals and cannot give you medical advice.

We can however, give you space to vent and ask questions and give you support.

take care

Ann
Posted 2/3/2007 5:57 AM (GMT 0)
Meredith,

It is less comon that "regular" migraines...however you are not alone in this...

You may want to start doing some research on your own. I always suggest this, you can not treat what you do not understand, and I know that it is your doctor's "job" to treat you, but the more you know about the disease, treatment options and prognosis...the better you will be especially since you can not see a true specialist due to medical insurance limitations.

you may want to visit the websites for:

MAGNUM

National Headache Foundation

American Council for Headache Education

 I'll post more when I get a chance!!!

Hang in there and shoot me an email if you have any questions,

Sara

Posted 2/5/2007 4:38 AM (GMT 0)
i know its expensive, but I would Really try and find a neuro. you can go to. they are the ones who will be able to help you.

You need to try a preventative, like Topamax or something (mention it to your PDOC), an abortive, like imitrex or zomig, and something for rescue pain, mepergan is good b/c it has phenergan in it.(pain meds, no more than 2 a week, including OTC)

These are some step you and your doctor can start with, but I would really see if you can afford seeing a neuro at least once, and maybe get on a payment plan.
I'm so sorry you are suffering with this. I am 21 with severe migraines, though not the type you have(i've had one like yours, scared me to death).
We will all try and do what we can for you and offer you the best support we can.
Have a blessed week.
Ang
Posted 2/5/2007 9:08 PM (GMT 0)
With most migraine variants including hemiplegic migraine, triptans are contraindicated (imitrex, etc.), as are some other medications. I was told to stop taking once diagnosed.

I have to agree that a good neuro/headache specialist is the best way to go, especially with hemiplegic migraines. Does your pcp know of one that would be willing to work with you on a payment plan or at least maybe consult with her over the phone? I know that may be a stretch, but at least it is worth asking and explaining your situation to your doc if you haven't already done so...

Have you been able to start on any preventatives to help control the frequency/severity of the attacks? Take Care!
Posted 2/8/2007 3:16 AM (GMT 0)
I also have hemiplegic migraine. I'll try to answer some of your questions.
Not sure how many people get these but they are quite rare. My family was part of a study that has tracked the incidence in families to 1 of 3. For instance, I have 3 children and 1 of the three is expected to have these migraines.
Mine are rare. In fact I had my second one in 7 months on Saturday. Prior to that, it had been 6 years and prior to that, 12 years.
My 21 year old daughter gets them 2-3 times a year.
I refuse to let it impact my life significantly. I do have a medicalert necklace but that's about it.
The last one was quite severe. Couldn't walk, taklk, use my arm, hear, swallow for about 3 hours. Headache for 2 days. Still not quite as sharp but they aren't that frequent.
Hang in there.
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