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synergy2120
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Question about chronic
« on: Aug 13th, 2004, 9:51am » |
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Hi everyone.
Ive just spoken to someone on the helpline from OUCH about the O2 therapy and marc.
I explained that marc doesnt really get a warning when he is going to get an "attack" becuase if he is not having a full on attack he is either having constant shadows or the pain rests at a level 2-3. They seemed to think that maybe it wasnt clusters.
I just need to know if this is the same for other chronics or do you remain PF between attacks?
luv sarah xx 
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pubgirl
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Re: Question about chronic
« Reply #1 on: Aug 13th, 2004, 10:02am » |
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Hi Sarah
If Marc is in CONSTANT pain between attacks there is a chance he is suffering from several things, the most likely being a condition called Hemicrania continua (this is a constant pain then overlaid by severe Ch type attacks) good link at http://www.achenet.org/articles/6.php
but there is also a chance if he has been taking a lot of OTC drugs he may also have what is delightfully called a 'medication misuse' headache on top of CH. There is another syndrome too called Chronic Daily Headache syndrome but that doesn't really have CH symptoms.
Some sufferers during a very bad cycle have 'shadowing' between the attacks, but I think few of us would actually call it serious pain, more a feeling that the pain is there, waiting to strike.
If Marc is in constant pain, the Ch diagnosis is beginning to look more doubtful
Wendy
P.S. I am on the volunteer on the Helpline today and I haven't spoken to you. Bit confused now!
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| « Last Edit: Aug 13th, 2004, 10:06am by pubgirl » |
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synergy2120
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Re: Question about chronic
« Reply #2 on: Aug 13th, 2004, 10:15am » |
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Hi Wendy - sorry of to have confused you!! I rang the wrong number and got through to Les who answered my questions!
I have spoken to marc and he says that its more like a face-ache between attacks but that he does know when an "attack" is coming.
All marcs other symptoms look like CH but marc also reminded me that he has constant toothache as well at the mo so that is probably not helping - waiting for his GP to sort out a dentist for him.
Maybe he has got CH plus another kind of headache on top - how much more can god pile on him?! talk about a double whammie, "kick ya when your down" kinda thing!
We have written everything down and im sure Goadsby will be able to confirm it as being CH - hope it isnt but if it is then we know we have tons of support from everyone here and at OUCH uk.
luv sarah xx
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synergy2120
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Re: Question about chronic
« Reply #3 on: Aug 13th, 2004, 10:25am » |
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Just read the document on the link.
All marcs symptoms point to CH plus he was on Indomethacin for about 3 weeks with no improvement.
It gets very confusing all these "headaches" - they all seem to overlap in quite a few of the symptoms, no wonder it takes a long time to get diagnosed!
Thanks anyway Wendy xx
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pubgirl
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Re: Question about chronic
« Reply #4 on: Aug 13th, 2004, 10:35am » |
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Sarah
It's OK, was just a bit worried that for some reason you couldn't access the Helpline. Les is about as knowledgeable as it gets.
You are going to the right place to get the best diagnosis and the best treatment.
Don't panic in the meantime, Marc WILLl get the help he needs.
Wendy
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Prense
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Re: Question about chronic
« Reply #5 on: Aug 13th, 2004, 10:56am » |
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on Aug 13th, 2004, 9:51am, synergy2120 wrote:| I just need to know if this is the same for other chronics or do you remain PF between attacks? |
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For the most part, yes...
I still have little to no warning of an attack though.
Chris
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UN_SOLVED
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Re: Question about chronic
« Reply #6 on: Aug 13th, 2004, 11:05am » |
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Chronic or not, most of us get PF times between attacks.
I too have little warning. When the pain in my eye starts, I only have minutes before it's full blown !
on Aug 13th, 2004, 10:25am, synergy2120 wrote:he was on Indomethacin for about 3 weeks with no improvement.
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If the Indomethacin didn't work within the first 6 days, it's NOT going to.
Unsolved <PF at the moment>
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ex_pat_asia
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Re: Question about chronic
« Reply #7 on: Aug 14th, 2004, 10:15am » |
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on Aug 13th, 2004, 11:05am, UN_SOLVED wrote:Chronic or not, most of us get PF times between attacks.
Unsolved <PF at the moment>
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Unsolved - How many attacks are normal say in a one week period? Do you have any attacks that are easily aborted or do they all run for awhile?
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ex_pat_asia
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Re: Question about chronic
« Reply #8 on: Aug 14th, 2004, 11:38am » |
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Most clusterheads get 1 - 3 attacks daily...some may get more. I guess i'm not the 'norm'...If I only get 2 or 3, it's been a good day. I usually get 4 - 6 attacks per day on average. If it hits me more than that...I can't handle it for long....I go get DHE IV infusions.
99% of my attacks are aborted within 15 - 20 minutes with a 4 mg Imitrex injection. O2 won't work (for me). Neither will any other Triptans. Even at 15 - 20 minutes of pain ... it's still very severe.
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mynm156
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Re: Question about chronic
« Reply #9 on: Aug 14th, 2004, 2:40pm » |
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I very rarely get any warning. I do have painfree days but they are once twice a week onlu and shadows can hang around quite a bit.
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Jonny
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Re: Question about chronic
« Reply #10 on: Aug 14th, 2004, 2:49pm » |
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on Aug 14th, 2004, 11:38am, UN_SOLVED wrote:| Most clusterheads get 1 - 3 attacks daily...some may get more. |
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What would you say to someone that claims to have CH and says they get 20 HA's a day, most of which only last four mins?.............(This is not a trick question, just your thought on this)
....................................jonny
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Re: Question about chronic
« Reply #11 on: Aug 14th, 2004, 3:00pm » |
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Jonny,
I would tell them to get a neuro ... and ...
I would say that they have CPH (Chronic Paroxysmal Hemicrania
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Margi
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Re: Question about chronic
« Reply #12 on: Aug 14th, 2004, 3:01pm » |
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on Aug 14th, 2004, 2:49pm, Jonny wrote:
What would you say to someone that claims to have CH and says they get 20 HA's a day, most of which only last four mins?.............(This is not a trick question, just your thought on this)
....................................jonny
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Me, I'd say CPH - try indo.
Do I win a prize? 
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| « Last Edit: Aug 14th, 2004, 3:02pm by Margi » |
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Re: Question about chronic
« Reply #13 on: Aug 14th, 2004, 3:05pm » |
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Good answer Margi. 
Indomethacin is proven to be 100 % effective in treating CPH.
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Jonny
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Re: Question about chronic
« Reply #14 on: Aug 14th, 2004, 3:34pm » |
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BINGO!....Margi and Unsolved
Sorry, no prize....um, I could send you a picture......LOL
Nah 
Gotta love the folks that insist that they have CH and get 20 HA's a day......LOL
........................................jonny
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pubgirl
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Re: Question about chronic
« Reply #15 on: Aug 14th, 2004, 3:59pm » |
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Couldn't agree more!
Criminal really when those people could be pain free in days if they got diagnosed right.
The good news for Sarah's partner is that he is seeing Godsby ( ) soon.
Wendy
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synergy2120
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Re: Question about chronic
« Reply #16 on: Aug 14th, 2004, 4:50pm » |
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Sorry guys - may of got the wrong end of the stick here - do you mean marc might have CPH becuase he has already tried indo to no avail (or are you meaning someone else)?
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Jonny
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Re: Question about chronic
« Reply #17 on: Aug 14th, 2004, 4:54pm » |
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Sorry Syn......my question had nothing to do with Marc
Sorry bout that
.....................................jonny
Edit
Quote:| If it makes you feel any better, my cycle peak lasts around 6-8 weeks. That's right before they end and I typically get hit anywhere between 8-20 times per day. |
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Any guess?.......LOL
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| « Last Edit: Aug 14th, 2004, 5:02pm by jonny » |
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Re: Question about chronic
« Reply #18 on: Aug 14th, 2004, 7:36pm » |
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If someone were to say that they were having more than 10 headaches a day on a regular basis ... I Would think CPH and not clusters.
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synergy2120
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Re: Question about chronic
« Reply #19 on: Aug 15th, 2004, 6:55am » |
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on Aug 14th, 2004, 4:54pm, Jonny wrote:Any guess?.......LOL
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im with ya hun - hear ya loud and clear!!!!
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Jonny
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Re: Question about chronic
« Reply #20 on: Aug 17th, 2004, 6:29pm » |
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on Aug 14th, 2004, 7:36pm, UN_SOLVED wrote:If someone were to say that they were having more than 10 headaches a day on a regular basis ... I Would think CPH and not clusters.
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Nuff said 
..............................jonny
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Superpain
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Re: Question about chronic
« Reply #21 on: Aug 17th, 2004, 7:06pm » |
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Yeah, too bad I don't have cph.... 
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Chris
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Superpain
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Re: Question about chronic
« Reply #22 on: Aug 17th, 2004, 7:11pm » |
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Indo is innefective, the neuro said it wasn't cph... And you guys know alot less sometimes than you think.
Some people get hit alot more than other's. 20 ha per day is not exclusive to cph.
Before the peak of my cycle when I only have 4-5 per day is it OK if I say I have cluster's?
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Chris
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Jonny
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Re: Question about chronic
« Reply #23 on: Aug 17th, 2004, 7:42pm » |
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on Aug 17th, 2004, 7:11pm, Superpain wrote:| 20 ha per day is not exclusive to cph. |
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According to whom?......LOL
.................................jonny
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