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Topic: Episodic to chronic (Read 1140 times) |
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pubgirl
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I know this has been asked in different forms before, but I would like to ask again.
I am asking for a reason: being episodic and wanting to do everything to stay that way, I would like to learn from the experience of the chronics who used to be lucky like me if they can find the time to answer.
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If you had to say, from your own personal belief, was there anything that caused you to go from episodic to chronic apart from f..ing bad luck
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How many chronic sufferers if they had their CH time over again would do things differently? What would it be you that would do differently?
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Are there any chronic Ch sufferers here who believe any aspect of their treatment or lifestyles has worsened their condition? What is that aspect you blame?
Thank you in advance
Wendy
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nani
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Re: Episodic to chronic
« Reply #1 on: Oct 24th, 2004, 7:23pm » |
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Sorry girlfriend....I can't help you. I've no idea what made my CH change. I wouldn't say bad luck, I'd probably call it bad karma. My lifestyle has not changed, it's always been challenged by my inability to say no to my need for instant gratification. I'm a smoker, with a predisposition to couch potatoness. I eat all the wrong foods and do not excersize at all. Actually - it's a wonder I'm alive at all! 
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Others may come and go, but MY power is MINE.
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don
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Quote:| I'm a smoker, with a predisposition to couch potatoness. I eat all the wrong foods and do not excersize at all. Actually - it's a wonder I'm alive at all! |
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I love you.
Marry me?
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unsolved1
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(1) There was alot going on in my life at about the time I turned chronic. Weather it's relevant or not is anyones guess. I was in a failing relationship. Money was tight. I was in programming classes and math classes. I just 'took' my kid to live with me full-time. I had to move suddenly. It was a stressful time.
(2) I can't say that I would've dpne anything any differently. But, knowing what I know now, I would've went to the Diamond clinic sooner for the Histamine Drip Therapy.
(3) Being in the sun too long makes my HA's worse. Alcohol brings on an attack. Neurontin made me worse. Keppra was a nightmare drug.Topamax brought on kidney stones...twice. The Sphenopalatine Ganglion block made me worse also.
Unsolved
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pubgirl
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Thanks unsolved, if anyone's experience/ideas are valuable, yours are!
Wendy
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becky8
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Wendy,
I don't know if this is ture, but I read that not getting treatment soon enough when your NOT chronic can make you become chronic. And I believe that to a degree because I just figured out after all these years (and after I was already chronic with it) what was really wrong with me. I was being treated for sinus infections and allergies for many, many years. It wasn't til it was chronic (everyday) that I started looking for answers myself.
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pubgirl
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Becky
Thanks for that, interesting! In your mind do you think it is the lack of the right drugs, or excess of the wrong drugs you attribute it to?
Wendy
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becky8
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Both, but mostly lack of the RIGHT drugs. I believe if I had been treated for the CH BEFORE I was chronic, I might not have become chronic to begin with and thats what this study said. I am sure using all that ( and I used anything)other stuff to take away the pain didn't help. And was told I needed sinus this & that and I ate them like candy. And it NEVER worked, sometimes dulled the pain alittle and then when the HA was over and I would think whatever the last med I took worked, but it never really did!!! Are you following me??? I get mad when I think about it now, and all that pain ( and being a jerk to my family, cause I hurt)
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JJA
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Re: Episodic to chronic
« Reply #8 on: Oct 25th, 2004, 4:37pm » |
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I am not chronic so I can't personally answer your questions, but...in "What Predicts Evolution from Episodic to Chronic Cluster Headache?" , Torelli and Manzoni(2002) looked at many factors. People who became chronic smoked more, drank more and consumed more caffeine. This doesn't mean those things caused CCH though. They even point out that one person quit drinking before their headaches became chronic. Maybe those people just had more addictive personalities. If you are interested, there are many more predictive traits looked at, but these were the only ones that you could control. They also mention that the average woman became chronic 4.5 years after their headaches started. For men the average was 7 years. If you have gone longer than that, you've already reduced your chances by at least half.
Jesse
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Is it illegal because it's dangerous or is it dangerous because it's illegal? Our drug laws are ruining lives.
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nani
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Re: Episodic to chronic
« Reply #9 on: Oct 26th, 2004, 12:49am » |
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Quote:| People who became chronic smoked more, drank more and consumed more caffeine |
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Well- now I what did it to me.
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ksmiggy
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Re: Episodic to chronic
« Reply #10 on: Oct 26th, 2004, 4:21am » |
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[quote author=becky8 I believe if I had been treated for the CH BEFORE I was chronic, I might not have become chronic to begin with and thats what this study said. I am sure using all that ( and I used anything)other stuff to take away the pain didn't help. And was told I needed sinus this & that and I ate them like candy. And it NEVER worked, sometimes dulled the pain alittle and then when the HA was over and I would think whatever the last med I took worked, but it never really did!!! Are you following me???
how true, i went the same route, treated for everything but CH, started off at about 5 ch's in a year, within 3 yrs, was chronic, now get attacks daily, (anywhere from 2-5 times a day), gave up alchohol, but still smoke, am not over-weight, but not fit either, maybe earlier treatment might have helped, maybe not, as for doing anything different , i wouldn't know what not to do, i guess i'll have to sign up with the just bad luck theory, so with that in mind, good luck to all
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becky8
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I don't know if I believe that one on smoking and drinking. I am sure it probably makes things worst for CH , cause your body can't fight off bad things when you are abusing it. I don't smoke, drank very little (none now) and was pretty fit and I STILL have CH and chronic now. But using all thoses prescription and OTC drugs abused my body too. And I would double the stuff to ease the pain. Not knowing thats not what my body really needed, and if you use a drug that your body doesn't need over and over your just wrecking your amune system. Thats just what I think, I have had it 20 years now, chronic over the last 11/2.
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Redrum
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Re: Episodic to chronic
« Reply #12 on: Oct 26th, 2004, 10:03am » |
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Hmmm well I don't know if this helps but, I was chronic for about the first fifteen years of my history then went episodic about 8 years ago. the only significant change I can recall was that I quit drinking 
~Andy
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becky8
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Re: Episodic to chronic
« Reply #13 on: Oct 26th, 2004, 10:06am » |
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Andy,
That great news, gives us chronics hope!!!
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Ueli
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Re: Episodic to chronic
« Reply #14 on: Oct 26th, 2004, 10:55am » |
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When in February 1999 a new cycle started I found this site.
Since that cycle hasn't ended yet, the only conclusion I can draw is: being around you freaks has caused becoming chronic. 
PFNADs, Ueli 
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PerryGR
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Re: Episodic to chronic
« Reply #15 on: Oct 29th, 2004, 5:54am » |
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Hello Wendy,
I'm not sure i'm appropriate to reply to your thread since i've never been episodic- i started out as chronic. For that reason i can't answer your first question but let me try the other two.
If i had my CH time over again (3 years all in all) i would demand better answers from my doctors and ask for greater relief (i'd be more "loud"- let them know how bad this hurts and how it affects my life). I would also try to be more proactive myself (do some research, question my doctors' diagnoses).
I can't be certain as to what deteriorated my condition- it is possible that things would get worse no matter what i did. Probably alcohol played an important role as far as the onset of my CH is concerned. My HA's begun in December of 2001 but i can recall that for at least 6 months prior to that i would get a droopy eyelid and a congested nostril every time i had some alcohol. More than that during August, September and October of 2001 i was consuming about 2 bottles of vodka per week. So there must be a colleration between alcohol and the onset of my HA's. Quitting alcohol afterwards hasn't helped me in any way with CH- it has saved me money though.
As far as treatments are concerned... Topamax gave me a May-June cycle-in-cycle that wasn't there before. Currently i'm on 900mgs of Lithium (last 17 days) and use Imitrex as an abortive- i'm getting 5-8 hits per day and the hits i leave untreated last anywhere between 2 1/2 and 4 hours. I don't know if it's just another cycle-in-cycle or it's the meds causing this. I do know that every year about this time i take huge leaps down darker cluster-paths.
I don't know if all this makes any sense- hope it is of some help.
PFDAN to all,
Perry.
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Haven't posted in a while so let me re-introduce myself... Male, 25y.o., CCH sufferer for a little bit more than 5 years. Verapamil and Lithium seem to work well at the moment.
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don
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Quote:| It wasn't til it was chronic (everyday) |
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Being "eveyday" doesn't mean you are chronic.
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DerbyDemon
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Re: Episodic to chronic
« Reply #17 on: Oct 29th, 2004, 9:14am » |
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Nip it in the bud as quickly as you can. The longer it lasts as an eposodic the greater your chances of becoming chronic. It acts like water over rock for a period of years - slowly etching a painful place in your head until you can't root it out.
Find the cocktail that works for you as a preventative and stay on it.
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sandie99
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Re: Episodic to chronic
« Reply #18 on: Nov 6th, 2004, 4:01am » |
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Wendy,
I wish I could tell you some great theory why my CH changed, but I can't. I think that crappy luck is the best I came across! 
When I look back, I would not change a thing, though. The docs cannot tell us why we have this beast, so I concentrade on feeling great. So, after my CH turned chronic, I turned my life around.
Funny, but as my HAs are worse, my life in general is better!
Best wishes to you, Wendy. I keep my thumbs up for you and all other episodics that your CH doen't do the switch!
PFdays,
sandie99
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
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unsolved1
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ppl ... if you're going to go chronic, then you're going chronic. You're NOT going to be able to stop it. It is UNcontrollable. There is no sure fire way to "Nip it in the bud".
imho
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karma
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Re: Episodic to chronic
« Reply #20 on: Nov 6th, 2004, 11:59pm » |
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Hmmmmm. Lets see what a five minute search gives me.
O wait a minute here it is the six month thread about no longer being chronic. And here is another one. a year of no longer being chronic. PF in both cases!
There is hope and there is a way worth trying to gain PF time.
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unsolved1
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I think I was misunderstood. I didn't mean that once you go chronic, you're chronic forever. Cycles break, even chronic ones. Different ppl react differently to meds, therapies & procedures.
Take my case for example...there was nothing I could do to stop it from staying with me for over the last 4 years. I've done everything they've (neuro's) said, I've tried all the meds (and procedures) ... believe me ... i've tried. I don't want to be chronic
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toolong
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Re: Episodic to chronic
« Reply #22 on: Nov 7th, 2004, 6:36am » |
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I've been thru all the posts on this thread and I believe becky8 decribes my thoughts on this exactly.The sooner you are diagnosed and treated with the right meds,the better the results.I was episodic for years and all I was taking was pain meds that put me in rebounds and started my chronic cycle(been there about 6 years now)Did my own research and found some things that do work for me,02 is now my drug of choice,although I do take some to help prevent onset.Still chronic,but now have good days and not so bad days.Good luck!David
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ozzy
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Re: Episodic to chronic
« Reply #23 on: Nov 8th, 2004, 9:59am » |
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Ok, here is my monkey wrench.
I have had CH for 16 years. Here is my evolution....
I was undiagnosed/misdiagnosed for over 10 years. Had very few cycles at times maybe one or max two a year lasted 4 weeks then gone for 2 years or less or more, it varied...
Then I was diagnosed, treated succesfully with Trex NS and Prednisone to break the cycle. Three years PF, then I had one of the toughest cycles in my life, Trex, Pred and *Verapamil* 6 weeks later I was PF.
Then a year and half ago I started my current cycle, Trex again up to 6 times a day for weeks, at that point since I was still ramping down from the Verapamil from the previous cycle I was able to ramp up rapidly. After 6 months of Verapamil with mixed success, I decided to go med free. The intensity and or frequency diminished overall. I was not completely PF but the major ones K7 and above, I O2'd them (again with mixed success) and the minor ones K6 and below, I just danced through.
So in MY case, I think that meds have made it worse. This is my experience, my statement. I do not suggest that anyone go med free. It is a personal choice.
Ozzy
PS (Melatonin, has helped a great deal for those times when a "cycle" whithin the "cycle" is developing. 3 mg over the course of 3 consecutive nights seem to do the trick for me. Also regularity as others have suggested before, is important. Consistent bedtimes, meals, etc.
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Opus
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Re: Episodic to chronic
« Reply #24 on: Nov 9th, 2004, 9:45pm » |
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Wendy,
When I when chronic, I was not using any abortives besides none med ones. I didn't drink, but smoke and drink lots of coffee. When this cycle started it was different as I was only getting hit twice a day max, and even had some PF days tossed in. I went from 9's and 10's for 3 hours to 7's and 8's that only lasted an hour. I started using melatonin about three months before 1 year in cycle,It worked very well and gave me many PF days, when I reached a year I started getting slammed, the cause was that the melatonin became a trigger instead of a preventative. Nothing changed to cause me to become chronic. I also can now have alcohol again. It's like after a year a switch flipped that gave me chronic attributes. My previous cycles last three months and I used Imitrex as an abortive.
Opus/Paul
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