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Topic: Re-Occurance after 2.6 yrs free, and why? (Read 517 times) |
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Stewart
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it hurts, here!!
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Re-Occurance after 2.6 yrs free, and why?
« on: Mar 16th, 2002, 10:51am » |
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??? Hi I'm new to this site, except for occasionally glancing at some suggestions, now I am here for major help...going back to Doc. Monday. been CH suffer since I was 18ish am now 39, first visit to doc was 2.6 yrs ago, did the pred. and imitrex..no more after that one for 2.6 yrs..THEIR BACK....this time left side, followed by some funky whole head headches, (not my usual cluster) then, bam, 3 week after my lefties, now I am a righty headache..last night was worst one ever, and I snorted my imitex, did the O2 40 minutes at 12 Ltr..and after 1.5 hrs, it left..Go figure..HELPPPPPPppp!!!!!!!! Does a MRI or CT scan if caught during attack SHOW anything..I was going to request one..I see a Doc at DUKE Med center in Durham NC..somethings gotta give..Or am I just waisting my time and money on Scans?...
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TimandLaurie
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Re: Re-Occurance after 2.6 yrs free, and why?
« Reply #1 on: Mar 16th, 2002, 10:59am » |
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Hi Stewart
CT or MRI never showed anything even will i had a cluster in the tube. Go ahead and have it done to xout other things that mite be going on. good luck to you and let us know what happens.
tim ;D
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Cin
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Re: Re-Occurance after 2.6 yrs free, and why?
« Reply #2 on: Mar 16th, 2002, 11:16am » |
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Hello,
Pain free for over 2 years, that had to be GREAT, I hope I will be that way. I'm not much help because I'm still learning alot about this ch stuff, but I wish you well, and PF days. Good luck**
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Bob P
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Shut up Bob!
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Re: Re-Occurance after 2.6 yrs free, and why?
« Reply #3 on: Mar 16th, 2002, 12:55pm » |
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For the first 20 years my clusters would hit every 8 or 9 months.
When I turned 40 (just about your age) they jumped to every 2 years. Each time now they get a little farther apart. Last remission was 2 years 7 months.
We should consider ourselves lucky!
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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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Bob_Johnson
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Re: Re-Occurance after 2.6 yrs free, and why?
« Reply #4 on: Mar 16th, 2002, 2:31pm » |
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Someone has written that, "Why? is the most painful word in the English language."
The present state of knowledge about CH is so limited that answering the question is impossible. Try and take comfort in the knowledge which IS available on abortive and preventive treatments and use that to your benefit.
It's not likely that scans will show anything unless you have had a recent head injury (accident, etc.) and/or there are other, new neurological signs. But with CH as the only presenting issue, suspect you would waste your money.
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Bob Johnson
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Mattso
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Re: Re-Occurance after 2.6 yrs free, and why?
« Reply #5 on: Mar 16th, 2002, 5:06pm » |
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Well I've had clusters for 20 years, and they keep coming further apart, I'm very happy and lucky to report. Something like this:
1 year (twice), 1 year 1mo (twice)., 1 1/2 years (twice), 2 years (twice), 3 years, and the longest ever remission, before my current bout: 5 years. The only bum part of this deal is that the series of attacks are now lasting more like 2 months instead of the original 1 month.
My sympathies go out big time to those here that are less fortunate with the frequency of their bouts, or are chronic.
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William_Bellas
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Re: Re-Occurance after 2.6 yrs free, and why?
« Reply #6 on: Mar 23rd, 2002, 7:40pm » |
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I am happy to hear that people's cluster episodes get further and further apart. Mine have remained the about the same for the last 28 years....I have roughly 22 months of remission before my next period, and then 6 weeks of it.....I am finally at the tail end of a cluster period....
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rick
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Re: Re-Occurance after 2.6 yrs free, and why?
« Reply #7 on: Mar 23rd, 2002, 8:52pm » |
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Stewart, Mattso, & Bob P.,
Just out of curiosity, did any of you make any significant lifestyle
changes during your remissions? Diet, exercise, quit smoking, etc.?
Or does it seem to you all that this is just the natural pattern of your cycles?
Thanks,
Rick
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Mattso
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Re: Re-Occurance after 2.6 yrs free, and why?
« Reply #8 on: Mar 24th, 2002, 4:35pm » |
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I've made a significant change (for the better) to my diet over the years, but my feeling is that it's just the natural pattern of my episodes for them to be coming further and further apart.
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Lee
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Re: Re-Occurance after 2.6 yrs free, and why?
« Reply #9 on: Mar 24th, 2002, 6:40pm » |
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Get the Imitrex injections, it's no big deal. Most of us get complete relief within 5-10 min. Good luck!
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helobian
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Re: Re-Occurance after 2.6 yrs free, and why?
« Reply #10 on: May 27th, 2002, 11:06am » |
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I was free from the beast for six years, so long that I forgot I even had them, them BAM!!!! - and why? - nothing changed in my lifes routine - THEY just came back. The only reason I know it was 6 years was because I still had the old meds with the date on them.
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ave
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Re: Re-Occurance after 2.6 yrs free, and why?
« Reply #11 on: May 27th, 2002, 4:58pm » |
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Rick, one of the assumed causes for getting fewer episodes when one gets older, is that the vascular walls get less elastic. The blood vessels can expand less so less pressure on the trig nerve.
It is a theory, but in itself a logical one. No need to change lifestyles. I stopped smoking 18 months ago. My episode of gentle shadows erupted into beastly attacks last month after I ate some liquorices... go figure
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Peter
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Re: Re-Occurance after 2.6 yrs free, and why?
« Reply #12 on: May 28th, 2002, 1:54pm » |
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I too was averaging every 2 years, but currently have lasted to coming up 3 years. Why ? apart from the shroom thing last year I just don't know, just grateful.
Peter
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Peter (uk)
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DFloss
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Re: Re-Occurance after 2.6 yrs free, and why?
« Reply #13 on: May 28th, 2002, 3:35pm » |
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 Stewart,
Glad your here, Sorry About the CH's, But this is the place.
I had Ch for 7 years Before they Diagnosed it.
Got a great doc and he put a big stop on the Beast.
4 years latter the beast was back and wanted to dance. Got with the same doc and again with Pred and Verp we got tham broke( Oh yea I'm also A volunteer Firefighter and EMT, So I also used the hell out of O2)
6 years latter here it is againDoc's gone trying to train a new one LOL. Pred and Verp doesn't seen to be working as well this time around He gave me some AXERT And if I take the second I get the Shadows it works with-in about 10-15 minutes. Tried a half saturday and really paid the price, Just pissed off the Beast. Only thing different this time is no 02, Not on the Dept anymore, Trying to get the Insurance to go along with it.
Well Sorry to ramble but I hope they do get farther and farther apart.
Dennis
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kim
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Re: Re-Occurance after 2.6 yrs free, and why?
« Reply #14 on: May 29th, 2002, 7:24am » |
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Hi Stewart,
Why?
These are a few of my past theories...
1. God hates me.
2. I am being punished by God
3. I am "chosen" If I can withstand the ch, then I must be darn special and someone is training me for future "mission"
4. I was a bad child.
There is simply no answer to that question as of yet.
The best we can do is educate ourselves on the most effective treatments and continue to support one another.
Sorry you are suffering right now. Hang in. It will get better.
Well wishes, Kim
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JohnM
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Re: Re-Occurance after 2.6 yrs free, and why?
« Reply #15 on: May 29th, 2002, 9:05am » |
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Here is my latest theory for what it may be worth. I have been a CH sufferer for over 30 years (I am 50)
I was told that the body accumulates toxins/poisons over time unless you eat, drink, de-stress, and exercise exactly right for your body. CH might be nature's or the the devils way of detoxifying us and the intense pain is just a symptom of the process. When the toxins are out (it takes about a month to detoxify) the pain usually goes away for episodic sufferers until the next time toxins accumulate to pressure point.
A friend advised me to try a detox diet. I was a very sceptical at first but I was at the end of my rope and willing to give it a try. Amzaingly it seemed to work. It broke my cycle after about 2 or 3 days and have been pain free for 5 weeks.
He said I should do a detox at least every 6 or 12 months to rid the body of toxins before they try and "kill" you. He says other people feel symptoms like weakness, lethargy (M.E.?) and many other problems due to toxins in the body. We get CH.
What to eat/drink/avoid for at least 2-4 weeks (what worked for me):
Eat:
Mainly lots of fruit/veg/water for first few days. Later add some light fish/meat/pasta.
Avoid/Cut down: Tea/Coffee/Bread/fat/Salt/Preservatives/rich food/Drugs/Alchohol.
I am also doing some yoga stretching exercises for 20 mins/day.
I feel better than I have in years and much less stressed. I am actually enjoying my new food pattern. I was a great beer, steak and fries guy. Now prefer chinese style stir fries and less beer and wine.
It is easier than it sounds and costs nothing to do. My wife has been very supportive and has come up with lots of new menus for me and she is impressed with my recovery and the new more relaxed me.
I am hoping for a very long remission this time. My last episode before this recent one was May 1999. I used to get them every 8-15 months.
Not very scientific I know but might help someone willing to try. I would love to hear of another success.
Love J
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