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Topic: Hi all - UK sadman has found you! (Read 374 times) |
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andyiceman
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Hi all - UK sadman has found you!
« on: Sep 8th, 2005, 2:01pm » |
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My name is Andy, I'm 45 and in 2001 I got viral encephalitis, it left me with several problems one of which is chronic cluster headaches. See neurologist every 6 weeks to try and find a solution - still work full time, have great wife, 2 beautiful little children and I am not giving up against this incredible, totally 24 hour, 7 day week pain. No remission for 4 years - not one day!. If I can pass on tips to anyone else on how I cope - please feel free - it is possible (hard at many times) but keep on going. Just about to start Lithium - sounds pretty scary stuff but anything is worth a try. Good to find like minded guys and gals - oh by the way apparently I seldom lose my sense of daft humour!
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BobG
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Re: Hi all - UK sadman has found you!
« Reply #1 on: Sep 8th, 2005, 11:34pm » |
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Hey andy, welcome to the board.
Sorry to hear you're hurting. When you say the pain is 'totally 24 hour, 7 day week pain' do you mean the pain is always there? Or, that you have one or more bouts of pain throughout the day?
Hope the Lithium works for you. Many people have a combined dose of verapamil and lithium.
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andyiceman
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Re: Hi all - UK sadman has found you!
« Reply #2 on: Sep 9th, 2005, 6:17am » |
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Hi Bob,
Thanks for reply - the pain really is there 24 hours, 7 days a week! - had all MRI's etc - Doc's think the encephalitis has sparked the residual chronic clusters. Doesn't fit info on clusters but that's the diagnosis after 4 years of sweating and swearing!
Glad to be part of community
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paul_pero
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Re: Hi all - UK sadman has found you!
« Reply #3 on: Sep 9th, 2005, 6:57am » |
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Hi Andy
Sorry to hear your pain.
CH doesn't usually go 24hrs a day. Try the cluster quiz in the column on the left.
Look around the site and learn as much as you can.
Hope the meds you're getting will help. Have you tried O2? It helps me and many others.
PFDs to you
Paul
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LeLimey
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Re: Hi all - UK sadman has found you!
« Reply #4 on: Sep 9th, 2005, 7:15am » |
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Hi Andy!
Welcome!
I'm sorry to hear of all that's been happening, you have had quite a run of bloody awful luck there. Congratulations on being able to stay working through it and I'm glad you have the support of your family too.. makes all the difference doesn't it? I know my kids certainly give me the strength to keep going never mind my lovely hubby!
Sounds pretty much to me like your neuro has given you a diagnosis of CH because he can't work out what it is! I'm not saying you don't have CH for one minute, but there are conditions which are very similar (such as Paroxysmal Hemicrania for instance) and often get missed because they are so much rarer. The important thing is to find out exactly which condition you have because the meds for one will not be effective for another. The cluster quiz is a huge help and there is a link to a more comprehensive quiz there too which you might find of more help as well.
I don't know if you have discovered OUCH UK at all but they will be a big help to you
http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_we lcome.cfm&added=Dec2001&code=AD
There is also a helpline which is brilliant. Talking to another clusterhead is amazing, there is nothing like it and no one will ever understand this pain the same. 0161 2721702 It is a answerphone, you leave your name and number and one of the volunteers (who are all sufferers themselves) will call you back.
Apart from the Lithium what other meds are you using? Do you have any abortives such as O2 or triptans?
Have you tried O2? I swear by it. It works brilliantly for me. (BTW if you haven't tried triptans we need to have a chat!! The only one licensed in the UK for CH is Imigran INJECTIONS not pills or nasal sprays. They take too long to work
Oh and there is a GP Info page too if its of help!
http://gpinfo.ouchuk.org/
You might want to show that to your GP or neuro. If your neuro is worth his salt he will have heard of both OUCH UK and its patron Professor Goadsby who is one of the Ultimate Guru's in CH!
Let us know how you are getting on okay? If there is anything else specific to UK med names or whats available to us (because both do vary) you can either ask here and one of us will find it or you can post on the OUCH UK board, there is a sufferer support board you can use without being a member.. so do!!
Best wishes
Helen
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| « Last Edit: Sep 9th, 2005, 7:16am by LeLimey » |
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andyiceman
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Re: Hi all - UK sadman has found you!
« Reply #5 on: Sep 15th, 2005, 5:02pm » |
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Helen,
Great info
I am by trade an anaesthetic technician and am aware of lots of differences in our med names, so we might be able to help more clusterheads get better info. The Imigran info was news to me. When the pain is crippling the neuro tried me on Zolmig nasal spray (only resulted in tachycardia!) and Imigran tablets - but as you infer, the effect (if it was going to work) just took so long to maybe work that I was "climbing the walls" and looking for a large leaping place!
The cluster quiz seems to point me maybe to clusters - it does indeed warrant a look at PH - maybe there is a bit of both?
In one way I hope it really is cluster - this group is amazing and it's just great to talk to others with this incalculable misery going on in there heads.
Speak again - many many many thanks
Andy  but 
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LeLimey
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Re: Hi all - UK sadman has found you!
« Reply #6 on: Sep 16th, 2005, 7:41am » |
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There is a good way to determine PH which is to try Indomethacin. Its highly effective for PH and is often used to rule it in or out!
It would be worth speaking to your doctor/neuro about a trial.
Have you tried O2? You need to be breathing it through a non rebreather type mask at 12-15 LPM. Its fantastic, its my first abortive of choice every time. In fact 99 times out of 100 I can abort using only o2 within 5-10 minutes. Admittedly I'm using a much better type of mask which undoubtedly makes an enormous difference too.
Go to the OUCH UK site and look under treatements at O2 and CD Oxygen for an easy way in which to try it. The CD size cylinders are brilliant as you don't need a regulator, they have an integral one and so as such are perfect for trying it (or for taking to work etc as they are quite small) I'm sure you're well aware of all the O2 cylinder sizes actually!!
If you are interested the masks I was refering to were invented by a cluster sufferer and are available here www.clustermasx.com
Hope it helps
Helen
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