Hello from a Newbie - not new to SHM though!

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Hello from a Newbie - not new to SHM though!

Post by Herbalvon on Thu May 24, 2012 4:15 am

Hello Everyone

Like I said in my headline I am new to the forum (where have you been)? Not new to Hemiplegic Migraines, I was diagnosed in 2005 after it was thought that I had had a stroke; had emergency CT and a very painful Lumbar Punch, took 3 Drs 2 days to actually get any fluid all came back clear...discharged hardly able to walk! Had another attack and admitted to another hospital had MRI nothing showed up which seems to be the theme in others' stories that I have read - Neurologist diagnosed SHM. Since the first sudden attack I have tried all the usual medications but never managed to find one that helped and the side effects impacts on my mental health (I have a serious mental disorder Freak ). I won't bore you with the details of that unless it may help someone else in the same boat. I have some sort of symptom everyday in varying degrees and generally a big attack at least once a week which renders me incapable for a few days - left side always affected on crutches most of the time these days - which I hate Scream I have seen a Neurologist at the London Neurological Hospital but, not seen anyone for a few years now - too difficult to get to London - so not on any form of medication for my migraines. I have a degree in Herbal Medicine and still can't find anything that works on my type of migraines.

No one seems to understand how it effects my everyday living, people hear MIGRAINE and think it is just a bad headache mad so pleased I have found this forum I have learnt so much just by having a look around, symptoms that I had put down to my anti-depressants - thyroid etc., I think it is time I saw a Neurologist again but find this a bit of a mine field...I have previously seen quite a few with no help, even paid privately and been told it is all in my head because of my mental health - so really worried about seeing someone new - I live in Lincoln but I am a Yorkshire Lass, I do have family in Yorkshire so thinking of trying Sheffield, Wakefield or York does anyone have an opinion on which one may be best? I am getting worse I know that I need to sort it out? Thanks for listening!
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Herbalvon

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Re: Hello from a Newbie - not new to SHM though!

Post by Kala on Sat May 26, 2012 11:06 pm

Hi there,

Welcome to Migraine Talk but obviously sorry to hear that you have to be here.

I have refractory chronic SHM, meaning mine do not respond to treatment, saying that combined Gabapentin and Flunarazine helps to reduce the severity of what I call my "mental aura" (meaning I don't go off the planet, talking a load of rubbish and all the other symptoms of an aura) and my hemiplegic aura but I still have some level of disability on a daily basis and I do experience severe break through attacks. The problem for me is that nothing helps relieve my severe chronic pain.

I don't live very far from you as I live in a village outside of Newark. So have you ever been treated at the Queen's Medical Centre, Nottingham, I ask because before I was referred to London I used to be under a very good Consultant Neurologist, who I would recommend. Also, if things for you are as bad as they are then I would also recommend going back to London, as they are headache specialists and there are not many of them around. They will also have a better understanding of what medications are an option to you with regards to your mental health condition. I understand the journey may be difficult but you can always contact the hospital and arrange transport if you explain how your mobility is so bad, and a vehicle will be sent to pick you up and return you home after your appointment...door to door.

Take care,

Michala

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Re: Hello from a Newbie - not new to SHM though!

Post by Dr Pav Khaira on Sun May 27, 2012 12:25 am

York and Hull are both pretty good headache centres. I'm not a neurologist so couldn't really tell you too much more about that aspect

Hope you find some answers here!!
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Re: Hello from a Newbie - not new to SHM though!

Post by Tee on Mon May 28, 2012 7:48 am

Hello there and welcome.... sorry to read your chronic Sad

HM is no ball game..... I agree with Michala getting to see a doc makes sense - they are not all the same... I have seen 6 over the years and at first was told it was all in my head Scream ....

Listen to your heart and if you do not like what a doc says - find another one...

Here is a list of NHS hospitals and clinics - Talk to Michala as she has first hand experience of docs near you - but make sure you get a headache one Smile

Things have moved a little in the last few years (not as much as I would like) but they maybe able to give you a fresh approach to managing this.

Hug

http://migrainetalk.forumotion.co.uk/t96-migraine-clinics-in-the-uk

http://migrainetalk.forumotion.co.uk/t95-neurological-departments-in-nhs-hospitals

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Re: Hello from a Newbie - not new to SHM though!

Post by Herbalvon on Tue May 29, 2012 3:13 am

Thank you for replying...not in a good place to post a lengthy reply at the moment but didn't want to leave it too long to be in touch.

I am going to ask my GP to refer me back to London, Michala can I ask which consultant you see, I think I saw Dr A Bhara could be wrong though?

Take care
Von
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Re: Hello from a Newbie - not new to SHM though!

Post by Kala on Tue May 29, 2012 3:24 am

Hi Von,

I have just send you a PM (private message)

Best wishes,

Michala
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