question i should ask my nurologist

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question i should ask my nurologist

Post by robbo on Wed Dec 14, 2011 3:33 am

i have an appointment with my nurologist dr duddy friday at newcastle RVI. my hemiplegic migraines are getting worse .. from 2 a month to 4 a month. it also seems to me that i have been miss diagnoised now. there isnt a case of migraine on both my mums side of the family or my late dads either. and being on amiltriptaline 100 mg has now made me think they believe its familral not sporadic that i have. and from what i read in here triptans arnt what i should be on .....
so do you have any ideas as to the kind of questions i should ask him?? im going to ask if a gond is suitable and what kind of hemiplegic he thinks ive got , and nail him with the families history , as i believe that some consultants dont take these seriously , and have had experiance of apathetic attitudes to it , despite mine being so life changing and debilitating.
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Re: question i should ask my nurologist

Post by Tee on Wed Dec 14, 2011 6:52 am

You sound like you have your head round this - which is a great place to start.

Things I would suggest:

The preventative is not working as things are getting worse - therefore what preventative could you try next? - why does he suggest the one he does? - then plan when to start - and make sure he runs through the side effects - there are lots of suggestions on here - but the one I would suggest goes on the list is called Flunarazine - its a calcium channel blocker and is NOT licensed in this country (because of money) BUT a good consultant can get it for you - you have to pay but its about £7 a box ish. You just sign a form and they give it to you from the hospital.

What type for sure? (although to fair the treatments are the same)

Triptan for sure - I have HM but do take them - its something you need to agree with him and he needs to tell you the risks.

Take your diary with you.

Is there any supplements you could take? My doc has now agreed for me to take a combo of stuff and I have had some improvement on magnesium.

Does he think a greater opitcal nerve block might help?

Are there any Botox clinics running yet or are there any trials you could get on?

Make sure you write all your questions down and take someone with you.

Hope this helps.

Do let us know how you get on.

Tee

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Re: question i should ask my nurologist

Post by robbo on Fri Dec 16, 2011 8:21 am

thanks tee , your a great help and support !! Very Happy
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Re: question i should ask my nurologist

Post by Tee on Fri Dec 16, 2011 9:48 am

Hope it goes well for you tomorrow - do let us know how you get on x

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Re: question i should ask my nurologist

Post by robbo on Mon Dec 19, 2011 6:31 am

thanks for your advice. i went fully armed with diary and questions , lucky for me it was the same nurologist i saw when i was in there. i had a slight attack two days previous and i had beels palsey of my face and a bad head , so he made sure i was out of pain , the we went over my symptoms and effects . a gond isnt right for me nor is botox , but they have changed my pills to sodium valproate , they will build me up on these then wean me off my current meds.im unable to drive untill i am stable and my concentration gets better . so a return to work is out and ill probably be finished and be on esa. i applied for dLA as well thurs with the help of citizens advice. i had another turn last night , this time i felt like i was floating and the room spun alot when i closed my eyes. so today im walking about aided by my trusty walking stick !! on a happier note at least the amiltriptaline has had a slight success in keeping me out of hosptial , my friends thought i was using it as a B&B !!!!! Very Happy
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Re: question i should ask my nurologist

Post by Tee on Mon Dec 19, 2011 9:28 am

Oh poppet sorry to hear you have had another one Sad

Have you tried any of the epileptic drugs before? Epilim is one of the better ones re side effects - although I put a lot of weight on with it Sad

Did they say why a GONB or Botox was not suitable?

Good luck on the DLA front - do not give up on it - they seem to be turning everyone down on the first round....

Hang in there - one step at a time x

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Re: question i should ask my nurologist

Post by robbo on Tue Dec 20, 2011 6:54 am

no i havnt tried any of the epilepsy drugs before , the dr said gonb and botox was for pain relief and i needed more than that to help me. yes the cab said that with the dla they do alot of first refusals , but if they do will will challenge that decision.
today i feel better than i have been , although my head feels like a block of lead.
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Re: question i should ask my nurologist

Post by Tee on Tue Dec 20, 2011 9:37 am

Sad I am sure the stress of the doctors visit and doing the DLA forms will not have helped............ I hope you manage to get some rest and things settle in time for next weekend.

Do let us know how you get on with Eplim and if you do get any side effects please do shout - a few of us have tried it.

Good luck x

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Re: question i should ask my nurologist

Post by robbo on Fri Jan 13, 2012 12:12 am

hi tee , well i started epilim and was increased to 1.2g 600 am and 600 pm about 2 weeks ago . i seemed to be going well with it , but yesterday i broke out in what can only be described at the itch from hell , from head to toe !! i couldnt sleep either , after advising the gp ive now been told to stop as id developed an allergic reaction to it!! im now on anti histamine to help slow it down , and save the embarrasment when i go to the local shops !!! the gp has written to ask for an alternate , so im hopeful of a quick solution , i thought id add that as i enjoy a joke !! Very Happy
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Re: question i should ask my nurologist

Post by Tee on Fri Jan 13, 2012 1:54 am

lol Rob if you get the quick solution you will be first Smile

Sorry you have had a allergic reaction though - not fun - I hope the anithstamine works quick - If I remember right Eplim leaves the body quite fast, so hopefully you will stop the itching soon..... do let us know what they try you with next xx

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