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Prof Goadsby

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#1 Fri, 09/01/2015 - 00:53
Brian C
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Joined: 26/02/2014 - 14:35

Prof Goadsby

Has anyone, been on any of the new trial treatments from PG at Kings, I haven't heard from him since I last posted about getting on his trials. Unfortunatly I am on the brink again, and my phsyciatrist is on holiday, and is also the new chairman of the British Medical Council, Dr P Bennie so my DEPRESSION & HEADACHES, are at a new low.

I just need someone to tell me that there is still hope somewhere

B   Sad

Fri, 09/01/2015 - 09:47
ElizabethK
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Joined: 26/02/2014 - 14:26

Hang in there Brian, there is hope! Why don't you give the Helpline a call 01646 651979? Being able to talk to someone who understands what you go through helps through the low times. You are certainly under the best Neuro you could possibly be under in the Prof. Sadly the wheels don't always move at the speed we need them, but they do move! Make that call!

Fri, 09/01/2015 - 11:41
Dorothy
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Hi Brian - make the call, it will do you good to chat x there is always hope - especially with Professor Goadsby and others battling the beast for us.  Is there nobody else you can see through your GP while your psychiatrist is on holiday?

All the best - please call the helpline for that chat.

Dorothy

 

Sun, 11/01/2015 - 11:15
Dorothy
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How are you feeling now Brian?

Dorothy 

Tue, 13/01/2015 - 20:14 (Reply to #4)
Brian C
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Sorry, I haven't returned your message, but I was rushed in to hospital, as I had severe dizzyness, headaches, sickness, and numbness, a long with a dropping mouth, and sore joints. Has anyone ever had anything like this as, I have had this before, and was rushed in to hospital withe the exact same thing several years ago, and they put it down to my meds, this episode I wasen't taking anything.

I would like to try and find out if this is something that other members have had.

Thanks Again

Brian C

Wed, 14/01/2015 - 08:30
duetto
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Joined: 26/02/2014 - 14:54

brian. I am the odd ball in the cluster world my symptoms differ from most people, but then I also get migraine, I was getting a lot of numbness in lower legs feet, and a tingling in them, also dizzyness when getting out of arm chairs and bending over, and a  nerve pains on skin surface, QS did a nerve function test [electric shocks in limbs while wired up to a computer] this showed mild axonal neurapthy.

also had blood test to eliminate diabetic conditions.

do not have dropping mouth, but speech mumbles occasionaly, often feel sick but being sick does not happen.

all this may have nothing to do with you but ask for the nerve test re the numbness if in your limbs.

Wed, 14/01/2015 - 13:31 (Reply to #6)
Dorothy
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Sorry to hear that Brian - so what conclusion did the hospital come to this time?  You say the last time the hospital put it down to your meds but if you weren't on any this time what did they think?  You should go to your GP anyway to follow this hospital visit up and discuss what happened.

All the best vibes to you

Dorothy

Wed, 14/01/2015 - 18:58
Brian C
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Hi Dorothy, they put it down to my Clusters SUPRIZE AYE:loser:

Wed, 14/01/2015 - 19:21
Dorothy
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Sounds awful Brian. I have had sickness and dizziness with mine but not the other symptoms.

Sun, 18/01/2015 - 15:00 (Reply to #9)
Janewhitzend
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Last seen: 5 years 9 months ago
Joined: 02/01/2015 - 05:37

Hi Brian ..Sorry you are having a hard time of it. I would definitely mention it to the neuro for further investigation. Have you heard of hemiplegic migraines? Some of your symptoms 'may' fit this..obviously I am not a Doc so all usual caveats apply etc. 

Maybe worth a google..?

The problem can be, as with all neuro issues, is that there can be so many overlaps..but warrants a chat with your neuro. If you can remember any details about the lead up to the attack it may help the the doc pick it apart etc.

good luck 

Wed, 21/01/2015 - 00:12 (Reply to #10)
Brian C
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Joined: 26/02/2014 - 14:35

Thanks Everyone, I have e-mailed Dr Tyagi my Neuro in the S/General in Glasgow, but I am still hopeing that I will be seen by  PG before my next DHE in March.

Thanks Again

 

 

PS

Is This a HALO Migraine   )

;)  :bigsmile:

Wed, 21/01/2015 - 14:57
duetto
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Joined: 26/02/2014 - 14:54

brian

have you seen this article

http://headacheandmigrainenews.com/migraine-and-bells-palsy/

getting their free email newsletters make some good reading.

 

 

david

Wed, 21/01/2015 - 15:17 (Reply to #12)
Brian C
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Last seen: 1 year 5 months ago
Joined: 26/02/2014 - 14:35

Thanks for everyone's support, as I said previously I had contacted Dr T, he said it probably was my clusters, and he would talk to me more when I go for my DHE in March.

 

Thanks Again

 

  Beter the >)>) U now

 

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