My Dr doesn't know what's happening to me

I've had migraines since 13, I am now 30. Two years ago I was diagnosed with vertigo. Only it's not vertigo and it's been getting worse. I will feel fine one minute, then the next thing I start getting extremely dizzy. My face starts to tingle and get a cold sweat. My arms and legs tingle and ger very heavy. I can't move. I can't lift my arms or legs. Sometimes I shake. Not alot. But it's all uncontrollable. I get very nauseated and extremely dizzy. While all of that is going on, I can't talk. My speech is so slurred and my vision blurs and doubles. It's almost like I'm very drugged up, but I'm not. Dr says it's aura symptoms from my migraines. Why would it change so suddenly? Why am I experiencing paralysis when these attacks come. It gets so bad I can't hold anything, or even look around with my eyes. Otherwise it gets worse. These attacks have always lasted no more than 3-5 hours at a time but they are becoming more frequent. My blood pressure has been checked, heart, I've had MRIs, cat scans.......the doctors don't know what causes it. Please help. I can't live like this anymorw.

Hi. I had similar migraine attacks with auto immune disease. If you have other problems like gi issues or joint pain or other symptoms ask for a referral to a rheumatologist.

I was just diagnosed with Fibromyalgia. I deal with a ton of pain in my hips and lower back. And yes, the GI issues are there as well, unfortunately. Thanks for the advice. I will talk to my Dr about seeing a Rheumatologist.

Hi,

Yes I can understand why the symptoms are so distressing they mimc a stroke, and your symptoms match mime as well.

They told me its called Hemiplegic Migraine and I get admitted to hosp everytime as they think its a stroke.

Since starting Botox and taking Flunarizine at night, the attacks have reduced considerably.  I havent had an attack since January!

But when I get these symptoms my GP always tells me phone for an ambulance as you dont know and neither do the paramedics, if it is a stroke or not.

Good luck and hope I have been of some help.

Best wishes

Yes do. Fibro very common in auto immune sufferers. Have a google of migraine in Lupus. Not saying you have Lupus but a lot of forms of vasculitis can cause that kind of migraine symptom. I have Behcet's disease and get it. Bloody awful. Often misdiagnosed as hemiplegic migraine.

I've never heard of a Hemiplegic Migraine before. I will definitely have to look into that. Thank you so much. My Dr did say my symptoms are imitating strokes. But we have no proof of said stroke. I have not gone into the doctor when I have these attacks. I can't move, walk, talk, drive. I can't afford an ambulance ride, so I ride it out at home. Thank you so much again! I will look into what you suggested!

Yes I had stroke symptoms too. So awful for you.

Get him to check inflammatory markers too x

Thank you. I will put that on my list if notes for the doc. Do you know if the Hemiplegic migraines are reversible? How does he check inflammatory markers? Does it hurt?

If it is auto immune related not likely to be hemiplegic migraine but more likely to be something auto inflammatory like mine. My migraine was controlled with immunosuppressants and interferon. But there are various treatments. Inflammatory markers are est and crp and also worth checking ana.

Do you get anything like flushing in your face or upper torso?

Or do you have dry eyes/ mouth or any recurring ulcers/canker sores?

I take it you dont live in UK, when you say you cant afford an ambulance?  You need a specialist headache neuro to diagnose HM really as many drs dont even recognise it

. I get flushed in the face right before an attack and during. It also happens alot when i get dizzy. It happens alot inbetween as well. I have had so many canker sores in the past year and I never use to get them and yes I have dry mouth and dry eyes. I use droos for my eyes and I usually chew gum to help with the dry mouth. I get very weak and tired for days after an attack too.

No, unfortunately I don't. I have always wanted to visit. We have five children and I was on medical leave for six months. I went back to work for two months and then had to quit. I can't afford much right now.

It just sounds more and more like auto immune disease. Flushing in face points to Lupus. Dry mouth eyes points to Sjogren's. I will send you an amazing story later from a woman in the states finally diagnosed with Sjogren"s.

That would be great! Thank you!

they also point to Hemiplegic Migraine equally, but the truth is we are NOT Drs and you need to see a specialist in the field.

Good luck

That is the same thing that happened to me! I have had migraines since i was  13 as well and one day out of nowhere i got a horrible episode of vertigo with the same symptoms you describe. And the dr i see just keeps telling me it is because of my migraines but i cant make sense of it since i had migraines for all those years and never had an issue with vertigo.

The thing is Tanya, they do evolve.  Mine started off as cluster headaches, I would get a horrible bout about once a year, then I started getting them all the time, until I got better meds, then I developed hemiplegic migraine as well.  The problem is the meds that treat my clusters, make the HM worse!

Its so frustrating!!!! I was so scared the first time it happened and now I take nortriptilyne 10mg which does not help 100% but it takes the edge off but I wish I could find something better to take...

Migraines are so tough to treat as they have so many varients and so many treatments.  I would definitely see about Botox and Flunarizine,  These are good for migraines.  If the nortriptylene works to a degree, ask about increasing dosage to see if it makes any difference.  Or whether the side efffects out weigh the benifits.

But if your symptoms get bad and you have weakness and slurred speach, call an ambulance straight away