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Topic: Question about chronic (Read 923 times) |
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Jonny
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Re: Question about chronic
« Reply #25 on: Aug 17th, 2004, 8:22pm » |
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I dont think there is a person alive that could do 20 CH'ers a day for more than two days.
But thats just my HO, plus, theres not enough time in the damn day
........................................jonny
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Prense
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Re: Question about chronic
« Reply #26 on: Aug 17th, 2004, 8:39pm » |
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on Aug 17th, 2004, 8:22pm, Jonny wrote:| plus, theres not enough time in the damn day |
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That's what comes to my mind...
Chris
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Superpain
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Re: Question about chronic
« Reply #27 on: Aug 18th, 2004, 3:29am » |
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Jonny... #1 Says me... #2 What you think is your "HO", and exactly and only that... Come visit me in cycle. There are 24 hrs per day, that's plenty of time.
Unsloved... You misunderstood me. Yes Indo is effective for CPH. It did nothing for me... Case in point. And not to argue, but I think you were one of the first if not THE first to suggest to me that I might have CPH... I could be wrong and forgive me if so, but the way I remember, it was you that prompted me to explore the possibility of cph because of the # of hits I was getting per day. I don't have CPH.
And Quote:| And you couldn't handle 20 of my headaches per day !! |
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I'm gonna that write off to you misunderstanding me...
You don't know shit about me or my headaches except for what I tell you. I take offense at that statement... And I thought it was an sort of an unwritten law around here to not diminish other people's pain.
That statement is assinine and shows nothing but selfishness, ignorance and a complete disregard of empathy. I can withstand 20 ha's per day. What's the most you get? K10 is not an option for me. How high do yours go? My headache will kick your heads ass!!! 
Stupidity at it's finest... A pissing match over an undeterminable subject with no winners.
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Chris
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synergy
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Re: Question about chronic
« Reply #28 on: Aug 18th, 2004, 6:09am » |
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Break it up you two - i didnt start this thread to cause an argument!!!!!
superpain - how long did you take the indo for? im not going to judge i just wanna know.
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Prense
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Re: Question about chronic
« Reply #29 on: Aug 18th, 2004, 9:25am » |
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20 attacks in a 24 hour period sounds rather... Well, that averages out to 1.2 hours per attack. Of course, there would have to be a rest period to define individual attacks...how long, 10 minutes? 10 minutes would make each attack time average out to 1.36 hours. Assuming you get 4 hours collective sleep, the attacks would average back to 1.16 hours still with a 10 minute breaktime between individual attacks and leaves no time during the day for anything else...
If this is what you put up with for even one day out of your cycle, you're a bad mo fo. I lose my friggin mind after my third daily attack, but I am averaging 2.5 hours per. That would be the equivalent of your 7th...
Chris
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Superpain
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Re: Question about chronic
« Reply #30 on: Aug 18th, 2004, 5:11pm » |
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on Aug 18th, 2004, 9:25am, Prense wrote:20 attacks in a 24 hour period sounds rather... Well, that averages out to 1.2 hours per attack. Of course, there would have to be a rest period to define individual attacks...how long, 10 minutes? 10 minutes would make each attack time average out to 1.36 hours. Assuming you get 4 hours collective sleep, the attacks would average back to 1.16 hours still with a 10 minute breaktime between individual attacks and leaves no time during the day for anything else...
If this is what you put up with for even one day out of your cycle, you're a bad mo fo. I lose my friggin mind after my third daily attack, but I am averaging 2.5 hours per. That would be the equivalent of your 7th...
Chris |
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3 days of indo....
Prense, the amount of time a headache lasts and the frequency that they happen changes daily for me in "peak". It's like the beast has a timer he likes to play with and he sets it for different intervals each day. One day I might get 20 minute headaches every other 20 minutes, the next I'll get 30 minute headaches every 45 minutes... It's weird... But whatever interval they occur in, they are +/- 2minutes accurate all friggen day and night.
 4 hrs of sleep! I wish... There's just about no such thing as sleep when I'm in that period. I'm lucky to get 45 min's to an hour at a time in my peak.
I get hit constantly with K7 and above that last anywhere from 10 minutes to 2 or 3 hrs for an average of 6 weeks... I'm not a bad mofo. I just have no choice in the matter. I almost lost my fuckin mind this last time. I was sleep deprived, depressed and in pain almost constantly. I was on the verge of a full blown nervous breakdown. I had to take a leave of absence from work and I couldn't do anything except get ready for the next one.
Then I found this place and got welder's O2 and found a good doc. Thank God.
The neuro said I was one of the most extreme cases he had seen. I discussed CPH with him and he said he was sure that I did not have cph, but with my urging he gave me the script for indo anyway just to make sure... Actually he gave me everything I wanted and then some.
Then within 3 weeks I was completely PF. I think it may have just been the end of my cycle, but the pred, O2 and imitrex brought immediate relief when I most needed it.
I understand everyone's guidance relating to a high number of HA's and CPH... And for the most part you are probably right. But I am an exception, and I think there are other's like me that are extreme cases, so I think we should be careful to dismiss people's headaches to cph based soley on the number of headaches one has.
Sure it doesn't hurt to give the indo a try, unless you develop ulcers....
I don't know... I've done the dance for 18 yrs, and I KNOW I have cluster's. I was diagnosed my first cycle... And I guess I just get pissed when people try to tell me that I don't, and I couldn't handle that many headaches.
When newbies cry because they're in their 3rd week of a 4-6 week cycle, I laugh to myself but I try not to diminish their pain or circumstances. And when I say I'm extreme; until you've walked in my shoes, or lived in my head as it may be, or you've developed little doctors initials after your name, just believe me. I'm not new to this.
Geez...
Next thing I know you guys will be telling me I have migraines.
Peace and PFDAN to you all. 
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| « Last Edit: Aug 18th, 2004, 5:12pm by Superpain » |
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Re: Question about chronic
« Reply #31 on: Aug 18th, 2004, 6:04pm » |
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on Aug 18th, 2004, 5:11pm, Superpain wrote:
I did not say four hours of uninterrupted sleep... And if you say you only get 45 minutes to an hour of total sleep a day for more than a few days, I'd say you are full of shit.
...but, like you said... I have never had 20 attacks in a 24 hour period. Guess that just makes you a bad mo fo.
Chris
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Superpain
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Re: Question about chronic
« Reply #32 on: Aug 18th, 2004, 6:17pm » |
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I misunderstood. Sorry.
I'd say 4 hrs sleep per day is about right... Broken up in 20-40 minute naps, maybe an hour here or there...
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Chris
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Lizzie2
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Re: Question about chronic
« Reply #33 on: Aug 18th, 2004, 6:40pm » |
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Hmmm just read this one...
I have the constant headache that never leaves...regardless of CH. It is a type of Chronic Daily Headache that Wendy was mentioning. Ever since I got that headache, I"ve always had eye watering and nasal congestion on the right when it is at its worst. AFter my figure skating accident in March of '03, that's when I started to get attacks that seemed like CPH. They only lasted like 2-20 minutes. However, I am completely unresponsive to indomethacin. Then in November of 2003, I got a whopper that went for 4 hours. And very shortly after that I started getting headaches at 5pm, 7pm, 9pm, 11pm, 2am, and 4am. During my December to January hospital stay, I was diagnosed with clusters, got some O2, and the attacks went down to about 2 /day. Since then, I've kinda gone up and down with number of attacks, and once in awhile, I have cluster-free periods for about a week at most (generally). I don't have any pain free time between attacks, but that is because of my other headache type...not related to CH. My neuro calls it one of three things, depending...either chronic migraine, new daily persistent headache, or hemicrania continua. Hemicrania continua seems to be what it is most related to, but I don't respond to indomethacin, which usually diagnoses HC flat out. And then I have the CH on top of that. Currently averaging 4-6/day after quite a long period of only 2/day.
I don't really know what all this will contribute to your arguments other than the fact that I guess maybe sometimes people have more than one headache type, which can make getting an accurate diagnosis pretty difficult sometimes. My CH's usually last about an hour or so if unmedicated, but the time can vary a little bit. With O2, I can usually knock the bastard out within 20 mintues, but sometimes O2 doesn't work. I'm thankful that it works at least some of the time.
At any rate, it's important that everyone gets an accurate diagnosis and gets the medication they need. Just remember that if indomethacin doesn't work, it doesn't mean it is not CPH or Hemicrania Continua. There are the weird flukes out there...including me, maybe. 
Sarah, I hope that Marc has good luck seeing Goadsby!!
Hugz,
Carrie/Lizzie2
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Prense
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Re: Question about chronic
« Reply #34 on: Aug 18th, 2004, 7:07pm » |
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on Aug 18th, 2004, 6:17pm, Superpain wrote: Broken up in 20-40 minute naps, maybe an hour here or there...
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That sucks though... Naps will kill me! I am fortunate enough to "typically" get at least 4 hours sleep uninterrupted. Naps are da debul! 
Chris
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Superpain
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Re: Question about chronic
« Reply #35 on: Aug 18th, 2004, 7:12pm » |
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Yeah, that's the thing... Wether it's bedtime or in the middle of the afternoon, 20 or 30 minutes of sleep means it's time to get hit.
BUT I did find relief for a couple nights just before I went to see the doc with 18 mg of melatonin. I'll never forget the first night. I got 8 hrs of almost completely uninterupted sleep except for the occasional shadow. I subsequently tried smaller doses but it seemed to make me more agitated feeling than anything else.
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Chris
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Jonny
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Re: Question about chronic
« Reply #36 on: Aug 19th, 2004, 9:11pm » |
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Quote:| This time however the cycle is almost a yr old and I've just in the last week kicked into the serious pain all the time phase... I'm having what I call "four-bangers" about every 30 mins ( because they bang like hell for 4 mins) |
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Guess who?
.............................................. Mister 
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| « Last Edit: Aug 19th, 2004, 9:13pm by jonny » |
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synergy
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Re: Question about chronic
« Reply #37 on: Aug 20th, 2004, 9:46am » |
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Marc is very similar - he is always in pain (normally rests at a level 4) then the pain will peak throughout the day and night. He never gets a break (4 PF days in 3 years).
He was diagnosed by one of the top specialists (close to Goadsby) who said it was CCH - but a rare form.
According to Prof. Zach you have episodiac CH, and then there are 3 types of Chronic CH, the most common one which the majority of CCH have and then there are two extreme versions of CCH with slightly different symptoms
(like being in pain 24/7).
Marc has also been on indo for 3 weeks - with no effect.
Just because somebody is having more attacks then somebody else it does not necessarily mean that it is not CH. There is a chance that what Superpain, marc, and some others have is another form of another similar headache but if a specialist in the field diagnosis it as CCH and is sure it is not CPH then thats it.
As i said - there are 3 types of CCH - all the same but we some different symptoms - and that is what a specialist said.
luv and PF days to all - sarah xx
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Re: Question about chronic
« Reply #38 on: Aug 20th, 2004, 10:03am » |
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on Aug 20th, 2004, 9:46am, synergy wrote:| ...but if a specialist in the field diagnosis it as CCH and is sure it is not CPH then thats it. |
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If that were true, the CH population would be about 20% of what it currently is.
Chris
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Jonny
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Re: Question about chronic
« Reply #39 on: Aug 20th, 2004, 10:56pm » |
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Pick your affliction and jump on board......Christ!!
.............................................Mister
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Jaime
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Re: Question about chronic
« Reply #40 on: Aug 21st, 2004, 1:12am » |
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Thanks for sharing your story, Superpain. I'm 3 weeks into my very first cycle, and you could almost be telling what my life has been like. I'm not quite as severe - averaging 6 - 8 severe attacks a day, some days more, some days less. The days when it is more I feel like I'm losing my mind, and it makes the days when there are fewer seem like a relief. 
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Jonny
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Re: Question about chronic
« Reply #41 on: Aug 24th, 2004, 7:15pm » |
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pubgirl
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Re: Question about chronic
« Reply #42 on: Aug 24th, 2004, 7:25pm » |
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Sarah
Must have missed this. Who is Prof Zach?
Wendy
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synergy
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Re: Question about chronic
« Reply #43 on: Aug 25th, 2004, 5:09am » |
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She is a professor at Barts London in Hospital - she specialises in facial pains and seems to know Goadsby very well.
What she said might not be right but it does make sense to me as there are some people with CCH that have all the sympotms and some slightly diferent ones.
luv sarah xx
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Jonny
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Re: Question about chronic
« Reply #44 on: Aug 25th, 2004, 7:27pm » |
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