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First Neuro Appt....

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#1 Tue, 15/04/2014 - 16:25
Boomshakalacka
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First Neuro Appt....

Hey Folks,

 

I have my first Neurologist appointment tomorrow (wednesday) and I want to make sure I am fully prepared for the battles ahead to ensure I get Oxygen and Sumatriptan injections.

I shall be going in with:
 

  • A transcript of the Peter Goadsby interview from Inside Health
  • The Kip Scale sheet.
  • The Patient and Doctor information on Oxygen therapy.
  • Several copies of HOOF

Have I missed anything? Anyone have any advice?

Cheers

 

Chris

Tue, 15/04/2014 - 17:21
Val
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If you have a headache diary that is sometimes a help to the neuro, as he's never seen you before.  Is someone else going with you, it's sometimes hard to take everything in, or you might forget a question you needed to ask.  That's about all. Who is it you are seeing Chris?

 

Tue, 15/04/2014 - 17:26
Boomshakalacka
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Hi Val,,

I am seeing a mysterious "un-named" consultant at Stoke Manderville Hospital, as part of the "General Neurology" department. I shall report back tomorrow! Smile

The Headache diary! Of course! Yes I have been keeping one, and yes I shall be taking it with me! I don't know why I didn't mention it earlier!

Oh, wait... yes I do... Brain Fog brought on by this damned condition!

Cheers

 

C.

Wed, 16/04/2014 - 09:09 (Reply to #3)
Val
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I think brainfog should be one of the symptoms listed for CH, it seems to be common to all of us!  I can even forget where our bathroom is during an attack, and I've lived in this house 24 years!

This un-named consultant, do you know if he is a headache specialist?

 

Val. :)

Wed, 16/04/2014 - 12:38
Boomshakalacka
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Well, what can I say? I must be the Luckiest cluster headache sufferer in the whole of the living world! It pains me that I seem to have had it easy when so many of you have had to battle for even the most basic treatment.  :(



My Neurologist, Dr V Chamoun, just happened to do his training under Peter Goadsby,  so he was always ahead of me with all the right answers! Knew the condition, understood its impact and the pain and how the development of the treatment of "headaches" has changed since the mid 1980's. A really enlightening and interesting appointment.



I got my Injections and Oxygen therapy without having to ask! His own front line treatment of this Hell!

So I am happy, if a little nervous of injecting myself!

Thanks for support folks! Smile

 

Chris

Wed, 16/04/2014 - 15:48 (Reply to #5)
Val
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I just love posts like yours, so good when you get a neuro who knows about CH and doesn't treat you like an idiot!

 

Soooo please for you!  Well done.   And don't worry about the jabs, compared to the pain of a CH attack its nothing!

 

Val. :)

Wed, 16/04/2014 - 17:03
Boomshakalacka
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Thanks Val! Smile

Wed, 16/04/2014 - 17:49 (Reply to #7)
MartinL
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That's great Chris, bet you were so relieved!  I hope Dr Chamoun makes sure your GP understands your ongoing need for the injections and oxygen requirements as you will be getting your repeat prescriptions from him/her.

After 27 years I often feel my current GP doesn't really understand but recently I was given an appointment with a young trainee GP as mine wasn't available and he was very au fait with clusters and very co-operative.  I think it forms part of their training now, thanks no doubt to the existence of OUCH! Unfortunately the young Dr is not going to be at the surgery for very long!

Anyway, all the best to you, the injections are brilliant, nothing to fear!

 

Martin

Wed, 16/04/2014 - 18:02
Boomshakalacka
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Thanks Martin,

I am very lucky with my GP, he does not claim to know everything, but he is VERY good and going and finding things out! I have him to thank that I have got this far before my first bout has ended! So I am pretty confident that my needs shall be listened to as we have a REALLY good relationship.

The whole process has been made as painless as possible (headaches aside!!!) and All the supportive comments and words of assistance and advice have been fabulous!

I feel lucky with the way things have worked out,and having found this site! Thanks be to you all... especially the Trustees and the rest of the team that keep this going!

Am I babbling? I am still a little euphoric! Biggrin

Cheers all!

Chris

Wed, 16/04/2014 - 19:37
Val
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Can't emphasise enough the need for all sufferers to keep their GPs onside (if they have a good one that is) after all they write our prescriptions!  If you have an awkward or tight-fisted GP, be firm but persistent in getting what the NHS and the law says you are entitled to.

Val. :)

Wed, 16/04/2014 - 22:00
duetto
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with your imigran jabs, jab in a pinch of fat side of stomach much better than the leaflet that shows the leg and less painful. a good tip I got from QS

Thu, 17/04/2014 - 09:35
Val
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Good tip David, I use the 'pad' of flesh at the top of my hip - I find the leg bloody uncomfortable to inject into.  For the first few times you could try rubbing the area you will inject into with an ice cube to numb it a bit - that's if you can be bothered to faff about and find one when an attack is starting!

 

Val. :)

Fri, 18/04/2014 - 09:30
Dorothy
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:bigsmile: it's great reading a success story!

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