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Topic: CH Diagnosis (Read 388 times) |
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JoeKen
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Late Life Sufferer.
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CH Diagnosis
« on: Mar 14th, 2003, 4:25pm » |
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Hi folks,
Please be gentle with me, I am a new sufferer, and am new to this message board language - you folks seem to take it out rough on someone who asks an innocent question (or several)
I am a 63 year old male, resident in the UK, who has had periodic headaches for as long as I can remember. In later life I began to get periodic migraines - all the classical symptoms except 'flashing lights' which I never get.
About this time last year I began to get these new kinds of headaches which are definitely not migraines - only someone who has experienced both can be sure and believe me I'm sure !!
I have recently seen a consultant neurologist who has diagnosed CH and prescribed Sumatriptan in 50mg tablets. Having found your website and read various postings about the symptoms I am slightly concerned about his diagnosis as my symptoms do not seem to fit the general pattern. You are the real experts in this field so I would be interested in receiving your opinions. As I have not had a headache in the 2 to 3 days since I got the tablets I have not been able to assess their impact.
My symptons are headaches which develop slowly, perhaps taking 3 to 4 hours to reach a peak, and they can last up to 48 hours before subsiding. They are centered around the sinus area, they usually affect one side of the face, mostly the right. The eye on the side of the face affected goes bloodshot and streams 'tears' for around 20 minutes, and the same side nostril also streams enough to soak 2 or 3 hankies during the same 20 minute period. Some times the left side of the face is affected, but not as often as the right, and on one horrendous ocassion both sides were affected simultaneously. When these headaches are 'in season' I will get 2 or 3 each week for about 3 months and then the disappear for around 9 months, but as I have only suffered with them for just over a year it is perhaps too early to talk about patterns.
Does anyone have similar symptoms? - am I suffering from cluster headaches? - your (gentle) comments would be appreciated.
JoeKen.
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| « Last Edit: Mar 14th, 2003, 4:47pm by JoeKen » |
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Not sure I should be here, but it's as near as I'm going to get to finding out what is the correct name for my condition. Usually KIP 5 or below but last up to 16 hours and always one-sided, behind the eye, usually right but ocassionally left.
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jonny
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A cluster ramps up and slams you real fast and never lasts days.
You do have some symptoms of CH, who knows it may be some kind of mutant CH. Hang around, some of the greater minds will be by to advise you.
Hey Ueli!!!!
I hope you find some help, Joe.
...................................jonny
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Bob P
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Shut up Bob!
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Re: CH Diagnosis
« Reply #2 on: Mar 14th, 2003, 4:45pm » |
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JoeKen,
I took all my aggression out on that goofball on the medications page so I'll be fairly gentle.
What you describe doesn't sound completely like clusters. Almost sound like a combination of clusters and migraine. Or, as everyone here likes to call them, Cluster Meegraines
These are either cluster headaches with some symptoms of meegraines or meegraines with some cluster symptoms.
In your case it sounds like meegraines due to the length and slow onset of the attacks. It does have some cluster traits in the teary eye and runny nose.
Fortunately you have one of the best right in your county. Dr. Peter Goadsby over in Queens Square. You can get more info through the OUCH-UK bunch found here:http://www.clusterheadaches.org.uk/
So how'd I do? Gentle enough?
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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JoeKen
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Late Life Sufferer.
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Re: CH Diagnosis
« Reply #3 on: Mar 14th, 2003, 4:57pm » |
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Hi Bob P,
Yes, I had some of your replies in mind when I asked for people to be gentle!! - so you do have a nice side - I thought that perhaps you were in the middle of an attack and were taking it out on some poor innocent fellow sufferer !!
Thanks for your response - I will certainly follow up on the lead that you gave me. I guess the other good news is that the Sumatriptan is prescribed for migraines (not meegraines where I come from !!), so it should do something for my problem (the head pain, that is).
Thanks again.
JoeKen.
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Not sure I should be here, but it's as near as I'm going to get to finding out what is the correct name for my condition. Usually KIP 5 or below but last up to 16 hours and always one-sided, behind the eye, usually right but ocassionally left.
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Bob P
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Shut up Bob!
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Re: CH Diagnosis
« Reply #4 on: Mar 14th, 2003, 5:15pm » |
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JoeKen,
Thought you said you were from the UK. When John and Moe came over for our Atlanta convention year before last, I'm sure John pronounced it mee graine. Thought all you folks from that side of the pond did the same.
Imitrex is good for both migraine and cluster. We that have pure clusters use the Imitrex injections since they act in 5-10 minutes. With your slower onset the tablets should work fine.
BTW - My hat's off to you bossman, Tony B. That's one fine leader you folks got. It's an honor to stand beside yooze guys in the fight for what's right. Here's to the safe return of both our countries boys.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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JoeKen
New Board Junior
Late Life Sufferer.
Gender:
Posts: 78
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Re: CH Diagnosis
« Reply #5 on: Mar 14th, 2003, 5:22pm » |
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Hi again Bob P,
John an' Moe must have been from 'darn sarth' - arm fr'm up t'north, and we speak proper up 'ere.
Have a nice day - mine is just coming to an end - and so to bed.
JoeKen
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Not sure I should be here, but it's as near as I'm going to get to finding out what is the correct name for my condition. Usually KIP 5 or below but last up to 16 hours and always one-sided, behind the eye, usually right but ocassionally left.
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jonny
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HEY!!!
I was nice too, thats about as nice as I get.....LOL ;D
...............................jonny
Bob, You know he was talkin about me ;D ;D ;D ;D
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| « Last Edit: Mar 14th, 2003, 5:25pm by jonny » |
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Bob P
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Shut up Bob!
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Re: CH Diagnosis
« Reply #7 on: Mar 14th, 2003, 5:36pm » |
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Geeze Jonny. I been wonderin'where you was whilst Ueli and I were beating up old sublaxative on the medications board.
I ain't gonna tell nobody how nice you can be, don't want to blow your cover.
BTW hub - on your birthday - Shut the fuck up!
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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Virginia
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Re: CH Diagnosis
« Reply #8 on: Mar 14th, 2003, 5:37pm » |
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That WAS really nice Jonny!!
JoeKen, like Jonny & Bob said a couple of your symptoms sound like clusters but others don't. I think most of us get STUFFED up noses when we're getting hit (for me the runny nose doesn't start until the h/a is OVER). Also, you said sometimes it's on both sides...at the same time?? That's not indicative of a cluster...And that fact that it takes 3 or 4 hours to peak is not like a cluster at all.
Make sure to take the cluster quiz and follow up with that DR that Bob referred you to.
If you're lucky, it will be determined that it's not clusters.
Good luck,
Virginia
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The Clusterhead formerly known as 9erfan.
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jonny
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on Mar 14th, 2003, 5:36pm, Bob P wrote:| Geeze Jonny. I been wonderin'where you was whilst Ueli and I were beating up old sublaxative on the medications board. |
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Im gonna have to get down stairs more often, I dont wander down there to often cause I have what works for me and it works well. On the other hand I could be helping alot of peeps with what I know on that board.
CHRIST!!!.....Somebody stop me im being nice again....LMMFAO ;D ;D ;D
........................jonny
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WendyHowe
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Hello JoeKen
(Hope it was as sunny 'ooop North' as it was 'darn sarf' today)
Agree with all the comments above, if it is CH it seems unusual (and frankly bloody lucky) that they come on so slowly. It gives you lots of time to abort them before they get unbearable. This site, the OUCH UK site and of course Prof. Goadsby will know best but I understand that some of the people in the UK who have either meegraine/migraine or migraine with some cluster symptoms and even some true cluster sufferers seem to be having success with the nasal Zomig (zomitriptan)rather than the pills. Zomitriptan and (I think)Sumitriptan taken orally don't seem effective for Cluster and in any case are too damn slow for a full blown cluster headache. Most neurologists in the UK prescribe nasal or injectable Sumitriptan (Imigran) so your prescription seems odd (??may be a cost thing as I think the nasal spray is much more expensive than the pills)If you continue to have a condition which defies proper diagnosis it may be worth trying the nasal Zomig or Imigran and seeing what happens.
Just a thought
Wendy
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WendyHowe
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Sorry
Question from me. Does anyone know the difference between Sumitriptan and Zomitriptan.If they are the same thing with a different name, my GP is an idiot and the above post is bollocks.
Wendy
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jonny
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Sumatriptan is Imitrex and Zomitriptan is Zomig.
Both triptans.
....................................jonny
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WendyHowe
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Thanks Jonny
I think Imitrex is called Imigran in UK. Both triptans but must be different in some way. Do you know why Zomig doesn't work usually work for CH but 'Imitrex/Imigran' often does then?
I really should have found this out before I started taking both of them. Blind faith in doctors I suppose
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jonny
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Cause Zomig is not injectable.
...............................................jonny
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