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Topic: help (Read 514 times) |
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pauldesmond
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Hello
I'm a cluster sufferer I've had about 600 two hour attacks this year. My Sumantripans are almost impossible to get maybe 1 per 30 headaches. Oxygen is a 7 year subject of fun and explosions for my doctors. Preventatives are out because I have HepC and Cirrhosis. I've found I can barely open the affected eye anymore, I also am so light sensitive i live behind sunglasses and curtains. My problem is my hepc needs to years of Chemotherapy, which gives you a constant headache. So far I've failed the Chemo twice because no-one gives me cluster medicine. It is a place to be wary of the suicidal pain of Chemo plus clusters.
My Neuro has given a stern warning if I give up Chemo because of vision loss or headaches, people will think I'm mad and put me in an Asylum. He didn't give me any oxygen or painkillers. I feel i'm going mad, I know a bit about lithium and phycosis, am I mad is the pain ignorable. My family doctor will give 2 sniffs per month. Now I can see Peter Goadsby if Necessary but doctors have said sumantripans are wrong because i'm always begging for them. Also I feel more chronic now, still headachy and twingy, light avoiding, but from feb to june was AGONY and the Chemo is just as horrible, you don't sleep for months, a constant headache is normal,
So does anyone know about pegulyated interferon and ribavirin treatment and chronic cluster, has anyone suceeded lived thru it?
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paulc
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Re: help
« Reply #1 on: Sep 4th, 2006, 8:43am » |
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on Sep 4th, 2006, 7:03am, pauldesmond wrote:Hello
I'm a cluster sufferer I've had about 600 two hour attacks this year. My Sumantripans are almost impossible to get maybe 1 per 30 headaches. Oxygen is a 7 year subject of fun and explosions for my doctors. Preventatives are out because I have HepC and Cirrhosis. I've found I can barely open the affected eye anymore, I also am so light sensitive i live behind sunglasses and curtains. My problem is my hepc needs to years of Chemotherapy, which gives you a constant headache. So far I've failed the Chemo twice because no-one gives me cluster medicine. It is a place to be wary of the suicidal pain of Chemo plus clusters.
My Neuro has given a stern warning if I give up Chemo because of vision loss or headaches, people will think I'm mad and put me in an Asylum. He didn't give me any oxygen or painkillers. I feel i'm going mad, I know a bit about lithium and phycosis, am I mad is the pain ignorable. My family doctor will give 2 sniffs per month. Now I can see Peter Goadsby if Necessary but doctors have said sumantripans are wrong because i'm always begging for them. Also I feel more chronic now, still headachy and twingy, light avoiding, but from feb to june was AGONY and the Chemo is just as horrible, you don't sleep for months, a constant headache is normal,
So does anyone know about pegulyated interferon and ribavirin treatment and chronic cluster, has anyone suceeded lived thru it? |
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Having cirrohsis (sp) of the liver and hepatitis C, along with CH, puts you in a special class; those diseases can kill you and I would not hazard a guess about what you can or cannot take for your CH. If you can see Dr. Goadsby then by all means do so. Perhaps he and the doctor treating your other diseases can come up with some way of helping you with your CH pain. Good luck, my friend!
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Paul C
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Charlotte
CH.com Alumnus
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Re: help
« Reply #2 on: Sep 4th, 2006, 9:16am » |
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Sorry to meet you this way, but welcome aboard.
Is there some personal reason you would hesitate to see Dr Goadsby? He has written or cowritten some of the best articles I have read. Were I in your country and could see him, I would.
Charlotte
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chopmyheadoff
New Board Old Timer
Its only a headache, deal with it - SMACK
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Re: help
« Reply #3 on: Sep 4th, 2006, 9:22am » |
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mate - get to london and see the prof !!!
He is THE EXPERT and im sure that he will be able to help you out !!
At the very least he will take a serious look at wether you can have triptans or not !!
good luck mate
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pauldesmond
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Re: help
« Reply #4 on: Sep 4th, 2006, 8:02pm » |
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Hi just me thankyou for your kind and quick support will book him Peter tomorrow.
Why do patients know so much more than the people paid to know.
Bit late here but had to say thankyou
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