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Topic: Cycles within cycles (Read 323 times) |
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kcopelin
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Cycles within cycles
« on: Mar 10th, 2006, 11:09am » |
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I have been episodic since 1981. March 2005 the beast reappeared and hasn't left yet. So I just might be chronic. But I am now in what seems to be a cycle within a cycle. CHs ramping up to 8s 3 and 4 times a day-O2 and trex NOT working. What is going on here? Anyone else experience this?
kathy
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nani
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Re: Cycles within cycles
« Reply #1 on: Mar 10th, 2006, 11:14am » |
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Yup. It sucked. I found that my "high" cycles were seasonal, spring and fall. My results with abortives were about the same, except that, I found congestion and sinus issues made them completely ineffective. I'd say if it's enough of a difference, you may want to talk to your doc, kathy.
hugs and pf wishes, nani
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kcopelin
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good grief
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Re: Cycles within cycles
« Reply #2 on: Mar 10th, 2006, 11:19am » |
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Thanks Nani. Am waiting for my insurance card-then will see a real neuro instead of the VA (whose latest RX was accupunture and naprosyn). I have no idea what else to ask for-have tried everything except topamax, and trex shots (cause I really really wig out at needles).
This truly sucketh, and I really apreciate y'all for being here.
PFDAN
kathy
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Bob_Johnson
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Re: Cycles within cycles
« Reply #3 on: Mar 10th, 2006, 12:00pm » |
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It's not unusual for an effective med to stop working. The medical literature has plenty of such reports and, during the early years of ch.com, I was regularly posting material about this issue.
The frustration, of course, is that we must start on a new search for something which is effective. The blessing, compared to only a few years ago, is that we have so many alternatives. But patience is the key to survival.
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
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Bob Johnson
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CHTom
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Re: Cycles within cycles
« Reply #4 on: Mar 10th, 2006, 12:09pm » |
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Upon reading your post, it appears that you may have become chronic-I am and do not wish it on anyone. I'm not a believer in the "cycle within a cycle" theory; in my experience it is not unusual to have bad cycles and milder ones one after another. You are making the right move by planning to go to a neurologist-check out, if you can, if he/she has much experience with CH, otherwise you may wind up wasting your money. I'd recommend that you get an appointment in a good pain clinic, with experience treating CH. If you find one, many have excellent neurologists on their staff or can refer you to a good one. Best wishes for you!
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E-Double
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Re: Cycles within cycles
« Reply #5 on: Mar 10th, 2006, 2:25pm » |
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Yup!
Happy Anniversary.
I just reached my 2 yr milestone   all good 
Last year in April I was having attacks that were non responsive to trex nor oxygen and they were lasting hours.
My doctor perscribed Zyprexa which I found a godsend.
It worked as quickly as imitrex did and did not have the nasty yucky feeling after.
Here's my tale......
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1120904753
It is also substantially cheaper than imitrex!
I am currently off all meds and only using Oxygen to abort.
The one medication that I might reach for as an emergency abortive would be Zyprexa!
Good luck,
Eric
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| « Last Edit: Mar 11th, 2006, 10:04am by E-Double » |
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Gator
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Re: Cycles within cycles
« Reply #6 on: Mar 10th, 2006, 7:47pm » |
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Been chronic since November 2003. I definitely experience cycles within cycles. Fall and Spring seems to be my worst times of the year. I am entering a high cycle now. Sleep is becoming almost non-existent, heavy shadowing between hits, increased number and severity of hits and this is usually when I get more of the extended attacks that O2 or trex won't abort.
Since my insurance company has cut me off from trex for the next 8 months, I just ordered a "Clustermasx" to see if I can make my O2 go farther. I also have a script for Zyprexa. Hopefully it works as well for me as it does for E-dub.
Big hugs and best wishes to you.
Mike
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Jasmyn
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Re: Cycles within cycles
« Reply #7 on: Mar 11th, 2006, 2:20am » |
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Kathy, so sorry you are suffering so much right now.
What dosage of Verapamil were you on and have you upped the dosage? Did you try the Pred taper and Melatonin at night?
Hang in there Girl 
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Jazz
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BarbaraD
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Re: Cycles within cycles
« Reply #8 on: Mar 11th, 2006, 8:37am » |
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I've been chronic since 97 and have "high" cycles - where I get hit with harder and more hits. During "normal" times I just have the daily hits (4-5s - two - four times a day average).
I've been on topamax since 99 and it's helped me stay sane and stopped the 9-10s except during certain parts of the seasons. O2, coffee, help to abort around a 4-5 -- caftergot after that. Take melatonin at night for sleep and that helps with the exhaustion.
Sorry, but it sounds like you've gone chronic. The hardest part of that is "accepting" it. After a while you learn what works for you and learn to deal with it and go on with your life with CH. When you get to the acceptance point - the beast looses and you win - you still get hit, but you learn to live with CH and can lead a fairly normal life.
Hope you find a good neuro soon. That's step ONE...
Hugs BD
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kcopelin
CH.com Alumnus
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good grief
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Re: Cycles within cycles
« Reply #9 on: Mar 11th, 2006, 11:15pm » |
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So, I'm on 240 mg verap they don't want to increase because my BP is low ordinarily. I take melatonin 9mg), benadryl (25mg)and elavil(10 mg) for my nightime cocktail. No more night time hits. That I can deal with. Day is a different matter though. Have not tried zyprexa.
I have though tried HBRW seeds-no effect and am considering the clusterbusters. Starting to feel like a toxic waste dump 
Am also on xanax and vicodin when needed. As vehemently oppossed to pain meds as I know many are, and I also was and refused them for 24 years, they were decreasing the intensity and frequency of hits. I did not experience rebound headaches. This past two weeks though have been hell and I know that the vicodin doesn't touch these monsters-so I'm not even going there. Thanks y'all for the feedback , please don't flame me for the vicodin-it was the only thing that helped for a few months.
P.S. when I tried the HBWR seeds I had detoxed from everything except the verap.
Linda showed me her clustermasx and I think I'm going to order one-I have to pinch mine shut at the bridge of my nose and hold it up against my jaw to get a seal-not an easy task while wrestling a Kip (God rest his soul) 10.
Thanks for letting me vent. There is a neuro in town that suppossedly has other CH patients. Or I may see Linda's neuro. Still waiting on the insurance card. Anything has to be better than the VA!
PFDAN y'all,
kathy
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