Hi all - my story so far. Hemiplegic (?!) migraines.

Hi all and thankyou in advance for listening. I have been desperate to be able to get all this down in print and have people who can relate to the bizarreness that has been my life for the last 16mths. I am a teacher.
In the last few weeks of the summer term at the end of July 2010 I started to get a tingling sesnsation in my right cheek and the top of my right hand. Some days it would spread up my arm and some days my cheek was actually numb. I'd been using the computer a lot so just put it down to that. I was then rear ended at very low speed by a 4x4. The car was damaged, the dogs, who were in the boot, were traumatised and the humans were unhurt. 5 days later (Friday) I was rushing around trying to get the car to the repair shop etc. and started the day with a low grade but fairly innocuous headache. By lunchtime this had got bad enough to take some paracetamol but wasn't a classic migraine headache - it went and did not return. I gradually got more fatigued but just put it down to having had a rough week. At between 5 and 6pm I left the house to drive to where I kept the horses, I found it increasingly hard to concentrate, constantly having to recheck that I was actually driving acceptably, the right side of my face started to droop and I started to get vertigo. I struggled through putting the horses to 'bed' and had increasingly difficulty trying to remember the right names for my young dog, my young horse and my young nephew - all young and male and strangely, all of a sudden, all one and the same entity! I staggered round my usual dog walk like a drunk then went to the fish and chip shop where I just about managed to order my take out with the room spinning, the whole right side of my body refusing to do what I told it and feeling like I was trying to control everything from a million miles away. I got some odd looks! I went home and just sat for an hour before becoming aware enough to start functioning again. The next few days I continued to have difficulties with remembering words and things that had happened - having to use cues to get things right. It passed eventually and by the Monday I felt fine so I forgot about it.
Over the next month the tingling in my arm and face continued, only going when I exercised. I then had another 'attack' the day after I'd had a big horse competition only the fatigue, vertigo, aphasia and amnesia didn't resolve so I went to the doctor - she referred me to the Stroke clinic thinking I may have had a TIA. I returned to work that week, after the summer break and was immediately met with gasps of horror at how ill I looked.
The next 5 months were awful. The numbness and tingling slowly spread up my arm, down my torso then started in my right foot and slowly went up to my knee. I had persistent weakness in my right side (my horses both started drifting to the left in training as I was stronger on that side). I had several more 'attacks', becoming more frequent and I started waking in the morning and counting the things that had switched off or back on again during the night. I lost the temperature sensation on the right side of my face and in my mouth, I had difficulties swallowing, the dexterity in my right hand (I am right handed) went to pieces, I had persistent nausea, vertigo and fatigue which got so bad I was eventually signed off for a month in January - I couldn't even stand up in my own classroom for a whole lesson and 20mins of riding reduced me to 3hrs of resting. I suffered from awful insomnia aswell.
The most scary thing which I have not seen mentioned anywhere was the difficulties I had breathing. I started to suffer from apnoea, not just at night but during the day - it was like my brain was just forgetting to tell my body to take a breath!
The general pattern of an attack is - up to a week in advance I get hot, 48hrs before I'd have a nightmare and a very restless night, start the day with a low grade headache, end of day I collapse with right sided paralysis, unable to speak, later I would have several hours of not being able to keep my balance, very cold and generally spaced out. Loud noises result in muscle spasms down my right side.
My GP was brilliant and very supportive, testing me for all the usual suspects including Lymes Disease - not thinking I was mad when I asked for this test. It was a long referral process, I thought I was going bonkers and he just reassured me that my symptoms were very real. I suspect he had been hankering to sign me off for a considerable amount of time before I finally had a physical and emotional meltdown, on the phone in floods of tears begging for help.
I finally saw the neuro, had the usual MRI scans and tests for all the normal things again and myasthenia gravis and LEMS just for good measure, all came back as normal and he finally discharged me back to my GP with a diagnosis of migraine and the suggestion of amitriptyline as a preventative - miracle drug!
I went from having an 'attack' every 6 days to one every 6 weeks with far less severe symptoms.
Unfortunately, since June the frequency has gone back up to 1 a week but nowhere near as severe. I went back to my surgery Friday to ask if it were possible to increase my dose but was not able to see my usual GP. I spent 15mins trying to convince this new GP that I'd never had migraines before last year, I don't actually really get a headache with the attacks that lead to the paralysis and that all I needed was an increase in the amitriptyline (I'm on 20mg). He gave me Imigran, saying I was obviously an awkward case and it was very rare to go staight to preventative meds! He also suggested taking stronger analgesics even though I don't really get a severe headache - I got annoyed. Saturday I started the day with my usual low grade warning headache, took the Imigran and have spent the last 36hrs wishing it hadn't. It intensified my normal symptoms to the point where I passed out and lost 6hrs! I live alone so there was no-one to see what happened. Won't be doing that again but will be trying to see my normal GP.
So, I guess that's it really and my main question is - do people think this is hemiplegic migraine. I've never actually been told anything other than it's a migraine. I've reduced my working hours, reduced my consumption of supposed trigger foods but can't say that I've noticed anything that really precipitates the attacks, not even my monthly cycle.

Sorry for going on and thanks for listening.

Jackie

Firstly welcome

Secondly - gosh - you have had a rough time

You do need to go see your GP again and talk through the preventative medication 20 mg is still low so you should be able to go up more - although it can make you sleepy - I am surprised the consultant has signed you off - maybe asking for another referral would help - did you see a headache neruo?

You need to know if this is hemepelgic and from what you describe I would say its sounds like it, but you need the doctors to confirm that. If it is then taking a triptan (the Imigran) may not have been a good move. Some doctors do not like to give triptans to HM sufferers due to the risk of stroke. Some however do - I have HM and do take the odd triptan, but I am in constant contact with my consultant and am working my way through the triptans to see which one works best. So you need to talk to YOUR GP at the least or better still a consultant before you taken any more.

What you describe is a lot of auara symptoms - you may find this of interest https://migrainetalk.forumotion.co.uk/t250-types-of-aura

There are a number of preventative meds out there and I think between us, we have had the lot on here :/ And you will find details in other threads - please do have a look and ask anything you wish. But thats is where the consultant comes in - you need a consultant to help you manage this. A preventative is normally given when you have 15 days or more of headache per month with at least 8 days of migraine. Keeping a migraine diary can help too.

Re the triggers - trying to work those out will help - this is a link to some https://migrainetalk.forumotion.co.uk/t330-types-of-triggers

But from reading just what I have - I would say that stress is one of them. You seem to have an attack after a very busy or stressful time?

I am sorry you are going through this and please do not worry about venting - that is why we are here

HM is a horrid migraine type - but it can be managed and we will help as much as we can.

Hugs

Tee

hi jackie , i too suffer these gastly migraines. ill tell you my story and perhaps we will see common things and find solutions .
i had a tia 41/2 years ago and the lhs of my body was effected by this event. i had what was thought to be another even 4 months later but it had a migraine feel to it , but the nurologist couldnt be sure so no diagnosis was done. i then had a spell of 3 years with out bother , then in july this year i suffered a biggie. i have bells palsey of the face and it makes the lhs droop . this time it did this and closed the lhs eye, my face was tingling horerendously, and i couldnt balance properly and staggered about , i went home and rested up, the next day it got worse and i got a nasty dull ache at the back of my head, and my speech went slirry. i went to a and e and by the time i got there my lh arm was unable to move and my lh leg went the same way . the drs thought id had another stroke and i was admitted to the stroke unit . i was catherised and placed nil by mouth as i couldnt swollow. i had ct and mri scans but they were all ok. i lay partially paralised for 3 days before my arm began to move again and it was 5 days before my leg also began to work. i was on a feed tube and a drip. i was slowly taken for a walk by physios and i could barely walk as my left leg would support me. after a few days after this i began to move around more but i had no real balance or cordination, so was supported the whole time. i got onto pureed foods as well much to my relief. i was doing well and the dr got the house sorted for me possibly going home after a 2 week stay , when i had a bigger one in hospital and slipped in and out of conciousness. it took another week before i was able to be sent home. i had 3 month rehabilitation with physios and speech therapisits before i was able to carry on with life, but i never come fully right after each attack. since this i have had 5 more attacks the worst was when i was taken to hospital semi concious . the dr at the rvi in newcastle diagnosed severe hemiplegia migraine . he said in my case the rhs of my brain goes to sleep for a time and causes this extreem case of hemipligia . he said there is no cure for it , and all he can do is attempt to trial drugs to act as a prevention . ive been on topomax and propanalol but i may as well have taken smarties for all the use they did.im currently on 75mg of amatriptaline. i changed my job to a less stressful one and two weeks into it i had another attack and am currently off work at the moment its been a month and ive had another minor event this week . there are migraine clinics held the length of the country , i did a google search and found one in sunderlands nuero unit. search the migraine trust and click on the link to find one near you. i wish you the best of luck
robbo

Hi Robbo and welcome.

Sorry to read you have HM

We have a list of NHS clinics under useful info: https://migrainetalk.forumotion.co.uk/t95-neurological-departments-in-nhs-hospitals

hi tee thanks for that link

Hi Jackie and Robbo HM is a nightmare and I am now three years in and now on Flunarazine and it has worked wonders on me and helped me no end. The HM attacks have dropped and the Aura( RH weakness) has all but gone now. the only side affect is the extreme tiredness from the pills but better that than the constant pain and aura!!! so there is help out there and light at the end of the tunnel.
I am under Dr shanahan at the UCHL and find him the best.
All the best to both of you and hope when you have worked your way through a few tablets you will find the ones that are right for you. But it takes time and patience and some of the side affects take time to work through as well.
Sheena x

Thanks to everyone - will be making an appointment to see my understanding GP, not the one I saw last week, and will ask for a referral to a migraine clinic. I've just started taking Feverfew and Butterburr along with high dose Magnesium and Riboflavin. Even after a few days the 'pressure' in my head and neck has subsided. I'm due a migraine on Tuesday if I continue with my current pattern of ten days off followed by 2 in 4 days. I felt the pressure building today but nothing came of it so fingers crossed!

Hope it holds off for you - do let us know how you get on with the GP x

Hello Broadhoj,
I cannot believe how similar our stories are. I own a Hair Salon and Training Academy in Kent and was diagnosed with HM just 6 weeks ago after a very long and worrying summer of being treated for a stroke, then told I had M.S then Drs were unsure and thought I had a very rare condition where there was only one other case in the country.
My symptoms started after a major headache in July where I thought I was going to Die, after suffering from migraines for the past 10 years this was totally different as the pain was in the back of my head.
I recovered being left with symptoms of confusion and forgetfulness which I had experienced 18months earlier after a 4x4 had driven into the back of me also being left with a weak right side (arm) pins and needles and numbness and whiplash. 2 weeks later I was rushed to hospital with suspected stroke I lost the ability to walk and talk. I spent a week in Hospital where I had a CT scan, numerous blood tests and approx 8 unsuccessful attempts at a lumber punch. I was discharged from hospital the same as I went in with the information that I had not had a stroke. WHAT WAS IT I HAD WAS THE QUESTION !!!!!!!!!!!
I made an 80% recovery and thought it may be a viral thing but was rushed back into hospital 10 days later as I had collapsed like a rag doll at home.
After 8 more days in hospital and more tests and a successful lumber punch I was diagnosed after seeing a Neuroligst 6 weeks ago as an out patient as having H.M my symptoms are full body paralysis and my auras are right sided weakness with slow slurred speech. My internal functions (bladder and bowels) are also affected in addition to the hot and cold moments. This has all progressed after my car accident.

Juliem,
Gosh you have had it rough. My symptoms are not so extreme but still very debillitating. I'm still pushing to get referred to a migraine clinic so I can actually get a definitive diagnosis as to what kind of migraine I have. My neurologist was a little vague and dismissive.
Good luck.
Jackie