Anyone experienced full-body temporary paralysis with migraine?

Hi everyone  I'm new to the forum and hoping to get some thoughts on this.
I've had migraines since I was 6 - I'm now 50 - they've evolved over the years and up to two and a half years ago I was getting 1 or 2 a year, they'd last about 12 hours with about 24hrs postdrome and were manageable. It all changed when I woke one day, and within a minute or two (before getting out of bed) my whole body became paralyzed, with strong limb jerks. I could hear and see but couldn't move or speak or make any noise. I lay there like that for two and a half hours before my 18yr old son came to see why I wasn't up - he phoned my parents who came - they phoned an ambulance - it was 4 hours before that first episode ended. All the way through it I'd had a migrainous headache and after the paralysis finished the headache got worse, my speech was difficult, balance was bad - lots of the normal migraine stuff i was used to. I was taken to hospital, still having the limb jerks and all the head stuff, they did bloods, MRI, CT - all normal. I was referred to a neurologist, and in the meantime GP started me on triptans, as the headpain was continuous. I was taking them every day, throughout the day. Once I saw the neuro he told me to stop them, as they clearly weren't working, diagnosed chronic migraine syndrome, and started me on Propanalol. He told me the paralysis - which I'd had a further episode of by then - was a rare but known symptom of migraine, along with the muscle jerks. Well since then I've had a gradual increase in the frequency of these paralysis attacks, was started on Nortriptyline when I had 8 in 7 days, and have recently started Topiramate also, as they continue to increase. I have daily migrainous headpain, facial tingling which sometimes spreads to head/arm/leg and is usually one-sided, afterimages, balance issues, muscle twitches and jerks, smell things that aren't there, photosensitivity, all to different degrees on different days. I only ever get the paralysis in bed - sometimes woken early hours as it starts, sometimes I've been up to the toilet and got back into bed and it starts, I've had a phone conversation and it started after I finished the call - and they've lasted between 30 mins and 4hrs, I've had up to 3 in one morning. I feel very drained after the paralysis finishes for hours, sometime the rest of the day, shaky and jittery, usually headpain's worse but not always. On the advice of the neuro I stopped all alcohol, caffeine, chocolate, analgesia, I'm drinking about 3 litres a day and I get plenty sleep. However they continue to increase.
My question is - after my big waffle  - has anyone come across anything similar with migraine? Because I'm not convinced on the diagnosis - the more I read online the more I think this isn't like anything - and that's a bit scary. Any help appreciated, thanks

Thanks for writing! I do want to first tell you that it is easier for a lot of us to read posts if they are broken up into paragraphs. It can be rough to focus on something that is not broken up into smaller parts.

I have basilar migraines and one of my symptoms is lowered levels of consciousness which can be kind of like I am paralyzed - though I have never thought to use that word before. I start out with a foggy feeling in my head and get really cold and then I have to eventually lay down as it gets worse. One of the phases I go through before I lose consciousness completely is I can't open my eyes - I can hear and think but I can't talk and I also can't move. I kind of think of this as the "stroke-like" part of migraine - sometimes if I concentrate really hard I can move a finger or move my leg but it takes a lot of effort and it just makes things worse. Do you ever fade out completely? The best thing that I can do for my migraines is recognize the early warning signs and find a safe place to curl up and let it pass. After it is over I feel like I have been hit by a truck and it takes a few hours to feel better.

I am glad that you have had an MRI and other tests - migraines are a rule out diagnosis and so testing is vital. If you are not happy with your doc and the course of treatment please get a second opinion. Are you a man or a woman? I have discovered as I get older they are changing and currently I am blaming that on perimenopause. Please stay in touch and let us know how you are doing.....L

thanks for your reply - and for your point about paragraphs! I'm new to forums and I was writing late last night so I didn't think about the "readability" - I will remember in future  

Usually I am totally conscious and aware - it's most like temporary Locked-In Syndrome - sometimes I'm tired so struggle to stay awake (have actually dozed off for a while and woken a while later still paralyzed) particularly if no-one is with me. But I often have difficulty opening my eyelids consciously - takes a great deal of effort. Now we know what's happening I try to communicate with family using blinks, but sometimes I don't have the control.

However I can't move anything, no matter how hard I try, until I start to come out of it. It's a gradual process, usually fingers then toes, shoulders, feet, arms, head/mouth, legs.

I am female and think perimenopause is probably the guilty party, whether it is migraine or something else! This is despite blood tests showing I'm not perimenopausal (even though my cycle has gone from normal to haywire!!). It's too much of a coincidence age-wise for this bizarre thing to start happening out of the blue!

Anyway I'm just building up the dose on the Topiramate at the moment, so I'll give it a chance, but I think if it doesn't work my GP would back me on getting a 2nd opinion - she's been great  

Thanks again for your reply

Hi! well it's been a while since I was on here - thought I would update you   

From the beginning of November i've been taking topiramate 50mg morning and night, after a slow increase, and I'm still taking 160mg propanalol in the morning and 20mg nortriptyline at night. I've had a lot of pins and needles and circulatory problems from the topiramate so we've been reluctant to increase the dose any further.

I started topiramate in early september and as the dose slowly increased my paralysis episodes and bad head days reduced, and from one episode in early december I had a whole month before the next episode! The daily head pain had also settled along with a lot of the other neuro symptoms so when I saw my gp in early january we were quietly confident.

well so far january has been horrible. I've had head pain almost constantly, I've had 7 separate days with paralysis episodes and one of those days there were multiple episodes over about 6 hours, and I've had one very bad head day.

I'm going to see how I go, I have another follow-up appointment with my gp in 2-3 weeks - if it gets really bad i'll get it brought forward. It's disappointing though when I thought we were getting somewhere finally

Hi,

I have never experienced paralysis with migraine. However, my father, who had migraines through his teens did. It was the first sign of a migraine for him, and this happened in the midst of the polio epidemic. My grandfather, a doctor, had to convince Dad it was migraine not polio.

I have had chronic intractable migraine for about 16 years now. I do have slurred speech with migraine. I think this disease does really funny things to the brain!

I hope you headaches improve soon. You may be having more attacks cause there have been so many changes in a short period of time.

Pain free days,
sailingm

I have that, sometimes just my right arm and other times its my whole body. After I can hear people around me but can not respond. They diagnosed me as having pseudoseizures. I wad told it seems like a seizure but with normal brain waves and the seizure meds do not help with that or the migraines. I t first started with really bad migraines (pain). Now it happens every night and no one knows why.

Thanks for your replies Sailingmuffin and mzelman.

Sailingmuffin, how long did your dad's paralysis episodes last each time? and how old was he when they stopped?

mzelman, how long do your paralysis episodes last? and do you still get migraine with the paralysis? or do you, like me, get head pain which isn't typical migraine pain, but with neurological symptoms? When do yours happen?

I'm glad to hear from both of you because you're the first people i've come across with anything similar!! Thank you

Just thought I'd update you again - saw my gp and she's referring me back to neuro - I'll keep you posted...

just thought I'd post an update. first referral back to neuro (17/2) wasn't received soo it was resent and finally received 14/3, almost a month after the first was sent :-( However I've still not even been given an appointment - yesterday I was told it'll probably be early June before I'm seen! for a follow-up appointment!

also it will still be with the general neuro consultant I've previously seen, not the headache and migraine specialist consultant. So I'll have to wait till then and say I want a referral to him and wait some more - ho hum.

meanwhile, having had 9 paralysis episodes each in Jan and Feb, I've had 9 so far in March with 6 days left to go. they continue to get more frequent, and the medication is clearly not doing the job. Some days I'm better than others, but often for the rest of the day after the paralysis episode I'm wiped out or in too much head pain to do much, I'm wobbly, brain fog, slurred speech...I've said about it before - more and more of my life is on hold and it's really hard.

moan over