Finding Hemiplegic Migraine Diagnosis without Insurance

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New Member

Date Joined Dec 2009
Total Posts : 1
   Posted 12/9/2009 4:08 PM (GMT -6)   
Hello all! I am so glad to have found this forum, and all of the information it contains. I am brand new here, and will try to keep this as brief as possible. However, you'll need a little of my history...

I am 33 years old, and have had migraines for most of my life. For the past six years, they have been daily. This started when I had a partial hysterectomy, however, I've had hormone levels tested. The tests always return within the "normal" range. Until July 2007, I had the luxury of fantastic employer-sponsored insurance. Because my symptoms included numbness, weakness, migraines that lasted for weeks, etc. I had an MRI approx. every six months. I was seeing a neurologist who is also a migraine specialist. In short, I was receiving the best care possible. Certainly the best care available in the area.

Times have changed, and I have a private insurance plan, and significantly less income. My insurance has excluded any type of migraine-related specialist under the "pre-existing condition" clause. So all of my treatment is conducted by my well meaning, very patient, general practitioner. Which brings me to my current delimma...

Today, on this forum, I learned about Familial Hemiplegic Migraines. I actually started crying when I read the symptoms. For the first time in six years, all of my symptoms made sense. All of my fathers' symptoms made sense. And his mothers'... I can't believe that my neurologist - my migraine specialist - never mentioned this to me!!! I don't have numbness, per se, but half of my body gets weak, heavy, and 'floppy feeling'. I lose my fine motor control. I cannot speak correctly, I lose words, I say words I'm not thinking. My neck gets so stiff I cannot turn my head... Oh, I could type for days. Except that it's hard to type, because my fingers don't work as well as they should. And I'm certain there are a ton of misspellings on here. Because over the past four months or so, I've become a terrible speller. Because I have these attacks all the time.

How should I begin the process of trying to get a diagnosis, or at least rule this out? I will have to do this without the help of my insurance company. Which means I will be going to my general practitioner. From what I've read, this is a rare condition; I feel like I will be asking quite a lot of my family doctor. Sigh. When you can barely function, you ask a lot of a lot of people, don't you? I am currently on Topamax, 50 mg in the morning and 100 mg at night, but it doesn't seem to be helping as much as I'd hoped for. The pain is extreme, and combined with the loss of muscle coordination & confusion - I'm rather miserable. I'd love to find something that helps!

art chick
New Member

Date Joined Sep 2009
Total Posts : 11
   Posted 12/9/2009 10:10 PM (GMT -6)   
i am on topamax and doing well but i have heard that a LOT of hm people are on verapamil. calcium channel blockers seem to be the way to go often but i have not tried them as yet. i think you are going to have to get your doc to do a lot of research for sure to be of any help here. there is a ton of good help at and a lot of people have this condition there. maybe someone would know someone in your area? it would be worth the money to find a neurologist who is a headache specialist to get a good assessment and prescription set up and then have the docs speak for free back and forth to manage your care maybe.. . .good luck!

New Member

Date Joined Sep 2011
Total Posts : 5
   Posted 9/13/2011 2:18 PM (GMT -6)   
scool scool
Hi to every1 in here who suffers from hemiplegic migraines. I hav been searching for a forum like this for a long time. Most wanted $$$ to join up. I appreciate each & every1 of u to write in here.
I'm an Australian woman, am 55 yo & had aura migraines since my 20's. Both my parents had slight aura migraines & my bro 2. As if the aura M weren't bad enough, at 50 I was overly stressed helping my son run a business my husband up & left (that's the short of it). Pins & needles ran up & down in a wave & weakness overcame me & my whole left side collapsed taking the rest with me to the ground. I immediately thought it was a stroke & managed 2 say 2 my eldest son that I didn't want 2 leave him & my youngest son alone. I was so frightened & weak. My son ph an ambulance & I went to the local hospital. After many Q. & a CT scan ruling out a stroke the Dr's said they believed I had a HM which I'd never heard of. I didn't want 2 go home (scared of a repeat) but they had no reason 2 keep me in. I recall the day b4 being extremely uptight & my words were garbled, I couldn't say what I wanted 2 say & I stuttered badly (feeling totally embarrassed).
I was told they r related 2 a stroke & 2 take it as a warning & not 2 overdo anything. I rested for about 3 wks b4 I got some energy back. My son never let me help with the work again. 5 yrs later, I hav suffered many since. Both aura & HM's. It's come 2 rule my life.. As if it wasn't already ruled enough with anxieties & phobias including agoraphobia. I was so upset 2 read of so many sufferers & in particular the 17yo that's not fair!!
Why am I here? It helps 2 learn of others & what they go thru & what meds they've used & some side effects. Guess what, I've never been referred to or heard of a headache or migraine specialist!! I jst take Naramig as soon as either type comes on along with 3 disprin forte, 1 panadeine forte & rest up & sleep if I can. I then take another Naramig 4 hrs later with more disprin forte & panadeine forte. I also serepax (oxazepam- since I was 18yo & temaze- temazepam since my husband left 5 yrs ago.
I've found that over exerting myself Like cleaning, walking 2 fast, gym (when I'm ever well enough 2 go) weights, or jst stressing will usually do it, tho sometimes Im surprised 1 doesn't come on after doing a lot physically. I also find that irregular sleep patterns bring them on. Broken, not enough or 2 much sleep! I currently hav a HM at the mo. I began 2 get used 2 them & different signs told me 1 had come on. Mostly everything moving so bad I cld barely tell which way was up or down. Ive dropped & had 2 crawl a few times. Sometimes they've happened whilst driving. Scary at any time. Other symptoms I notice.. Jst a little harder 2 breathe... Sometimes I feel like my eyes may bring 1 on, especially when I change to my stronger lenses. Other things I kno set them off is the sun's reflection on a car in front of me.. Flashing lights, even the reflection thereof, movies or ads that flash or even a flickering fire. Lines, stripes, a ceiling fan, geez so many darn things.
Last Friday I was standing waiting, in a health food shop. Haha! 1 came over me & it lasted a lot longer than usual. I gripped the counter so tight & all I cld think of was hope no1 sees me & they were all so busy they didn't. I've been in bed since except 2 let the dog out. I'm alone as my youngest son is overseas. I taught myself 2 push on thru them out of need.. & stupidity as another always comes back harder. When it's really bad I rest up but I get SO darn frustrated, upset & angry cos I hav so much 2 do. Tho I can't work due 2 back injuries & anxieties.. & HM I still try to move on. Each time I get knocked down I always get up again cos I dont want 2 b bed ridden as ive seen others. So much in life I want 2 achieve still I'm not giving up! I hav come 2 realise I can only do what I can do. The worst thing we can do is nothing or b 2 scared 2 go out! I wld appreciate any1's response as i did not kno so many people suffered like this & if any1 of us can help another, then we've achieved something. Not sure what ive written, typing this up on my phone. I'll be darned if I'll go 2 a specialist, I don't want 2 experience any side effects. This is bad enough.
I will look in2 getting blood tests & c what foods I cld be allergic 2. So thanks 4 that post. As most of u wld understand, it's stuffed up any social life I've had. Family & friends r tired of my excuses. I always feel I let every1 down & this makes me sad & depressed. If I get invited anywhere, my reply has become to be, "all being well" I'll be there. I'm jst scared of overdoing it bad enough 4 an actual stroke 2 finally get me & I kno I shld take it easy, but I'm a mum of 2 grown up boys who I feel I need 2 cook & clean 4 etc plus do the things I 'want' to do. I'm jst so sick of being held back each time. It gets tougher & as much as I'd love 2 hav a partner in my life, I don't think it wld be fair 2 him 2 take on all of this & so I feel even more lonely. I appreciate being able 2 get some of this out of my system.. I thank any1 who takes their time in reading my 'whinging' lol. I so try 2 hav a sense of humour. It keeps me going & I do hav a laugh at myself. Also, there's ALWAYS' people worse off than us. At least we're not on dialysis etc.. I reckon if I was rich, had a wonderful psychic talented Bowen therapist, I kno 1, jst can't afford her treatments, had a cleaner, a cook.. I'd be SO more free of these HM's. No one understands us except for us here that suffer these. So pls, let us be there 4 each other. I'm very willing 2 listen 2 any1's problems, if it helps a little & I kno it does, go 4 it. Love to all.. Try 2 b positive about what YOU want in life. It's amazing what positive thinking can do, I also realise that when is so down, it's hard 2 look at anything with a positive attitude. Take 1 day at a time.. Does any1 else do silly things whe. They hav 1.. Like it's gone 5am & I kno k shld be sleeping!! Pls talk 2 me..

Regular Member

Date Joined Mar 2011
Total Posts : 41
   Posted 9/13/2011 4:33 PM (GMT -6)   
Hi there,
I don't know if you live in the states, but if you do you should look up pcip (pre-existing ins. plan).  Every state has it now because Obama passed the bill.  I have it now.  Anyone with any pre-existing condition can have the insurance.  It's pretty good too.  They operate under the blue shield network and it is a ppo ins.  I pay $150 a month to have coverage and prescriptions are pretty cheap and co pay is only $25
Good luck

New Member

Date Joined Sep 2011
Total Posts : 5
   Posted 9/14/2011 2:39 AM (GMT -6)   
Hi, thanks 4 the info on insurance but I shldv not only said I'm an Australian woman, but that I am IN Australia. It seems mostly that evry1 here is in the US. Not sure if u actually suffer from HM.
I neglected 2 mention the frequency of the migraines I get.. If it helps any1, Both aura & HM. It differs, sometimes it's an average of either 1 - 2 fortnightly. Since I began getting the HM 5 yrs ago, they r the ones I get mostly. In the last 5 wks, I've had 3 HM & 2 AM haven't had a chance 2 recover from any, they seem 2 roll on in2 the nxt 1. Mainly I believe bcos I haven't allowed myself 2 rest up & actually recover from any. My fault I'm sure as it's most certainly a strong sign 2 Slow down & rest! It shouts out 2 me & yet I stupidly push on & thru them as I don't hav any1 2 help look after me or my house. I get determined 2 push thru until I get an even bigger 1 that screams out 2 me & here I am still resting in bed with this 1 !!
Sometimes thru some years I'll hav a break from them for up to 6 wks which is amazing, but I nearly always hav pressure in my head like a straining, like 1 is trying 2 push thru. Not sure if any1 understands that feeling? U prob do. My shoulders & neck build up so much tension & my neck burns with pain so much I can't stand it!
Thank science 4 drugs 2 help. Well any Questions I'm happy 2 help if I can. It wld b great 2 communicate with some1 who also suffers from HM. Cheers!

New Member

Date Joined Sep 2011
Total Posts : 1
   Posted 9/14/2011 1:36 PM (GMT -6)   
hi, i recently was diagnosed with hemiplegic migraines after a hemiplegic incident in which i could not speak. they actually thought i was having a stroke and gave me TPA (clot buster) and then a repeat ct scan showed that i did not stroke. i have since had many more confirming this. currently on neurontin, topamax, propanolol (getting ready to change to verapamil from propanolol)not sure what to tell you regarding the insurance. right now i personally am just trying to get over the 'drugged' feeling with all the meds. seems my choices are paralysis or drugged at this point...sigh..

New Member

Date Joined Sep 2011
Total Posts : 2
   Posted 9/28/2011 3:00 AM (GMT -6)   
Hi to everyone,

I too have HM as well as migraine with aura. It's an awful disease that robs you of so much of your life. And there are so few of us to reach out and help one another. Seems that most people I talk to, regardless of what country they live in, find it hard to find information, their doctors are not overly knowledgeable or skilled in HM, and their families and friends have a hard time understanding.

Have you heard that there's a group of people starting an international nonprofit and website dedicated to serving people affected by HM. They're called Hemiplegic Migraine Foundation (HMF). Their website is I think it's a great idea and can't wait for them to get rolling. You should check them out. There's a survey on their site they need for all of us to fill out.

To joyhannah, it's very scary in the beginning of your diagnosis. You have so many questions and are not sure what they future holds. It's frightening to have one side of your be heavy or go numb. But let me tell you that you are not alone. Educate yourself as much as possible to empower yourself in your own care. It will help you to work with your medical team also. I've found that doctors don't necessarily volunteer information; rather, you have to know the questions to ask and the details to share to help them help you. Education is the key.

Wishing you all a HM-free day!

New Member

Date Joined Sep 2011
Total Posts : 5
   Posted 9/29/2011 12:16 PM (GMT -6)   
Thank you so much for letting us know about the website. That is FANTASTIC news for all of us. I agree, it is knowledge that will help us. I find it difficult to explain my condition to my grown up boys. If there was some information to help families of HM sufferers, I'm sure it would help us. It is so frustrating & I feel pretty much alone with this.
I would appreciate any communication with fellow HM sufferers. Perhaps through this new website, we'll be able to chat with each other & give each other support & understanding. I'm really happy about this new site. It's what we need. I'm so grateful. Cheers!
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