Hi All my story

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Hi All my story

Post by wildone on Wed Apr 20, 2011 8:33 am

Hi

My name is Graham and was diagnosed with Hemiplegic Migraines just over a year ago.

I had suffered a stroke in July 2008 which as the consultant said I was lucky to be alive and come out the other side with most of my faculties intact, the stroke killed off part of my Cerabellar (bottom part of brain at back)

From then on I had a further 2 TIA strokes, and pulled through them quite well, but they affected the right frontal lobe.

Anyway from then on I was having severe headaches with paralysis down my left side which lasted for upto a week at a time, these were happening about twice a month. I then had a lumbar puncture, the results being inconclusive but they noticed a drop in a protein enzyne, and were going to do a further one after a month. This was happened whilst I lived in Birmingham, but was preparing a move North, as I had been medically retired from work, so had decided to sell up and move to a quieter part of the country with my wife and dogs, which we did.
After the move I was reffered to James Cook Midlesbrough hospital to see a Neurologists, after seeing him he believed it could be Hemiplegic Migraines and wrote to my GP with the medication to put me on.
I had betablockers and Topiramate tablets, after taking the Topiramate for about 4 days I was confined to bed with terrible pain and shooting shocks through the brain, anyway my GP stopped them straight away.
Since then I have been having the Migraines anything upto 3 times a month and lasting from 2 - 6 days so no real quality of life at all.

I was due to see my Neurologist last November but due to the Heavy snow the Patient Transport could not get to me to take me to hospital so it was cancelled, I eventually saw him some 3 weeks ago, he took one look at me and said "I want you admitted for further tests" so next Tuesday 26th April I am going into the Neurosurgery ward at james cook and see what happens.

I must say I also have a Cervical spine injury, which was picked up with the MRI scans of my brain, where the C3 to C5 vertibrae have bulged with calcifying around thus pinching the arteries feeding the brain, I saw a specialist 3 years ago about it but he said he didn't want to operate at the time, but this could also be a cause of my problems.

Hopefully I will get some definitive answers next week.

And that's my story, sorry it was long.

wildone

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Join date : 2011-04-20
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Re: Hi All my story

Post by Tee on Thu Apr 21, 2011 4:13 am

Firstly Graham - Welcome to the forum.

You have certainly been thought it Sad

I have Hemiplegic Migraines too, as do a number of people on here - so you are amongst friends.

Your experience of Topiramate mirrors many people I have spoken to - in fact I have not yet met anyone who has had a good experience with that drug - makes me wonder!

But I am pleased that they are talking you in and doing more tests - please please do let us know how you get on.

Best of luck

Tee x

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Re: Hi All my story

Post by Sarah on Sat Apr 23, 2011 2:41 am

Hi and nice to meet you. Smile

So sorry to hear you're having such a rough time. Best of luck next week.
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Re: Hi All my story

Post by whitzendJane on Sat Apr 23, 2011 4:48 am

NIce to meet you..I spoke to a physio who was doing research into those C2 C3's and he felt they could cause migraines/ headache problems in people. This was his own theory but my neurologist agreed that it can be a contributory factor in dome people too. So even if they are not the full cause it is a possibility that it is not helping your overall health. I am sorry you are having such a hard time.

Like Tee I have spoken to many people with headache disorders (not exclusively migraine type) and they have had bad experiences with Topamax too..as have I. I call it Dopeymax as I seemed to completley lose the plot on it. However it is not typical as an anticonvulsant and many others are out there that don't seem to cause the amount of side effects it can. In it's defense when it does work it came work really well so I can understand it being worth a go.

It was the only drug I lost weight on..but mainly because I forgot I was either hungry or where the kitchen was..I just drifted around in a haze of vagueness and nothing made sense more than usual LMAO

I hope ou get some more answers soon and all the very best wishes

Jane
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Re: Hi All my story

Post by JACQUELINE TEW on Mon Jun 13, 2011 8:41 pm

Hi definately go along with what everyone says about topiramate ,it has turned me into a total moron or so it feels i have to spell check everything and drive round roundabouts twice looking for exits on roads i`ve driven for years ,glad i`m coming off of them now .
You have had a terrible time of it bless you i hope they have managed to give you some help .
What you say about the spine is interesting to me as the year before my first H.M i had someone go into the back of my car (idiot !) and as a result had whiplash and a lower back injury my back still gives out now sometimes so i wonder if there is a connection .
I hope you are in better health nice to meet you Jacqui xxx
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Re: Hi All my story

Post by Tee on Fri Sep 30, 2011 7:59 pm

Hello there, just wondering how you are, hope all is good and you are out in that garden?

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