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Chronic migraines mimicking stroke, I'm not sure where I am...?

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Post by tigtan Wed Nov 16, 2011 2:32 am

Hi everyone. I'm so glad to finally find a forum where we can all share Very Happy as I've felt quite alone in this, although I know there are so many of us out there. My story is that I've suffered migraines for years, mostly just on a 'bad headachey' level a few days a year. However the last couple of years have become a nightmare for me. Unfortunately, I was brought up to believe there was no medical help or no help at all for migraineurs (it runs in the family) and that it was purely hormonal. I was working in a very stressful job environment, with noisy and strong light triggers which unbeknown to me at the time were all the typical migraine triggers. It's been an education, as well as extremely disabling with very little support (emotionally) from family and only little understanding from a couple of friends. Each week I spent going into work, every night I came home with a pounding, throbbing head, would go home to bed and every weekend, most weekends would spend mostly in bed. Not much of a social life, in fact I avoided it - even though as a single woman I'm constantly being pressurised by those around me to get married, have kids blah blah blah and I'm constantly being labelled too. It's not that you don't want to go out, it's that you can't. I often have no energy as I was constantly tired. Some days I feel so bad I don't eat or clean myself or the house - it's that bad, and I'm too weak to contact anyone.
I suffered almost daily from throbbing headaches (it was never in the same side it would vary at the time), aura migraines (flashing lights, loss of eyesight). It was only when I started suffering tinnitus, vomiting and vertigo that I finally went my GP for help - who diagnosed migraine, and after trying triptans, beta blockers I was then sent to a neurologist and prescribed Topiramate (topomax). The topiramate has helped - but with side effects, and has taken some time to get used to the meds and see the results. I still suffer about 15 days a month, and stress is one of my major triggers, I've found I'm light and sound sensitive when I'm prone to have a migraine as well as with smells too. During this time, I suffered what was thought to be a TIA (mini stroke). The left side of my brain went numb, and my face, lips, the left side of my body was weak for days and I was extremely tired and confused, however this was ruled out and confirmed that it was a migraine mimicking a stroke. It also felt as though the left side of my brain had been blown up like a bubble, and I occasionally get this feeling on the left hand side of my body from time to time. Over a period of time, the headaches have calmed down and seem to be predominantly on the left hand side of my brain. I've had 2 MRI's that have ruled out strokes, tumours and aneurysm. I think that my migraine is a combination of migraines as my mother and grand-mothers were supposedly hormonal, however I found out that it was also in the male side of the family too. I'm only aware that I am the only person in the family that has suffered a migraine mimicking stroke episode, and the neurologist has confirmed that this could possibly happen again in future and that I need to watch my stress levels. So at this point I have no idea if this is Hemiplegic or Basilar, or where exactly I fit, but I guess time will tell. I can only really empathise with the other posts I've read as I know how scary it is to think that you're having a stroke, how terrifying it can be - especially when there is no-one around to physically help you.

tigtan

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Post by robbo Wed Nov 16, 2011 5:00 am

hi that sounds so familiar to me . i have severe hemiplegic migraine and my symptoms are that of a stroke . i only developed this after i had a tia , so the lhs of myself is weakened , and suffers a lot during a severe attack it takes months to get better , but i never come fully right. there is help out there and alot of support as well , despite the backwardness of some nhs nurologists. so welcome to this forum and i hope you get alot of free advice and it gives you hope !
robbo
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Post by Tee Wed Nov 16, 2011 9:42 am

Hello there - firstly welcome

I am sorry to read that you have this and that you have not had the support around you Sad

Can I ask where you are - are you in the UK?

I am assuming you still see a neuro? Topamax when it works is great, but I know only too well that it can have some nasty side effects. But there are a lot more you could try.

There is quite a difference between Hemiplegic or Basilar - so firstly getting a correct diagnosis would be helpful - you need to push the doc to give you this - but this link might help explain them....

https://migrainetalk.forumotion.co.uk/t185-types-of-migraine

But you are quite right, they can hit anyone at any time and the first one is always scary............ but with meds and life style changes you can manage them. It just takes time and a lot of time.

Do you do anything to help with the stress levels? I find both meditation and Indian head massage help.

Tee
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Post by Tee Wed Nov 16, 2011 9:44 am

Hi Robbo and welcome

Again sorry to read you are another member of the club Sad

How are you managing them? Have you had any success with any of the meds or alternative stuff?
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Post by robbo Wed Nov 16, 2011 11:56 pm

hi tee im trying to manage them ... but they seem to be ruling my life. ive had topomax and propnalol which didnt work for me , so im on amiltriptaline 100 mg now . im looking to see gonb my work for me , but as i dont have eye disturbance ie flashing lights or reactive to light im not sure it can help.
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Post by tigtan Thu Nov 17, 2011 3:13 am

hi, thanks for the responses. i live in scotland. i've been doing a bit of yoga and pilates - however finances are very tight right now as i'm no longer working. i think it's been difficult for the doctors to give me a specific diagnosis as i've had so many symptoms including grogginess, as well as the above mentioned and they seem to change as well, although are settling into a 'pattern' now that i'm on the medication. i know it will only be a matter of time until i get a more specific diagnosis or see a more significant improvement.
i also have a acupressure mat which i use from time to time and a shiatsu massage pillow - as the tension i have in my neck and back is enormous. i also try to exercise cardiovascular when i can manage it - but this can also trigger tinnitus/vertigo symptoms leading to migraine. sometimes a hot bath helps with stress too, or going for a walk and getting a bit of fresh air.

tigtan

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Post by Tee Thu Nov 17, 2011 4:21 am

Robbo - its worth a chat with the docs to see if you can try more meds - its a matter of trail and error - they work so different on each person - the one I would suggest adding to your list to ask about is Flunarazine - it is not available in this country - but a good doc can get it for you - you have to pay - but its not that much. Statistically it is the one with the highest hit rates - it is a channel calcium blocer - there is a thread under meds on here about it. The side effects are not as bad as some of the others. It was the one drug that helped me get a break and whilst it did not stop them coming it brought the levels down. The only reason I came off it was the side effect of fatigue - but that took a year or so to build up and it is the one drug I have in my mind to go back to if everything else fails.

Magnesium is something I would suggest too - again there is a thread on it under meds.

Tee
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Post by Tee Thu Nov 17, 2011 4:26 am

Tigtan - keep pushing hun - once you have a diagnosis it helps.

You sounds like your on the right track re stress management Smile You could always do the mediation part of the yoga at home - its free - It took me a while to learn to mediate correctly but boy does it help. There is also something called Buteyko breathing which you can do at home for free Smile

https://migrainetalk.forumotion.co.uk/t373-buteyko-breathing?highlight=breathing
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