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Topic: AM I GOING CHRONIC? (Read 289 times) |
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murnahan08
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AM I GOING CHRONIC?
« on: Sep 29th, 2006, 10:55am » |
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Just wanting to get some feedback. I've been getting these ch's for 10 years now they started when i was 18. They have always been episodic, lasting usualy 4 weeks at a time then gone for the year. I have gotten them every month out of the year though, so that rules out seasonal. My last episode was 18 months ago. Then in July they returned this time lasting 6 weeks. Went to the doctor and he started me on prednisone and verapamil and they were gone after about 10 days on the meds. I continued the cycle of pred and 2 weeks after I finished the meds they hit again. It has now been 10 days with 2 to 3 ha's a day. SO 6 weeks of pain and 4 weeks pain free and now here we go again. Do you all think I am maybe going chronic? Has this happened to anyone else? This is to close for episodes don't you think? Or maybe it was the pred and then coming off of it, I don't know it's like a puzzle you try like hell to figure it out. My doctor just called and wants me to go back on the pred and verapamil I hate the Pred but he said it was the only thing to stop the cycle is this true? He told me to find a place with oxy and he would call it in for me maybe it will work. He said I did'nt need to be taking imitrex injections every day I thought to myself every day more like 2-3 times a day. He said it wasn't good, well the ha's aren't good either I told him. Well sorry for rambling thanks for listening please let me know if this has happened to anyone else so I don't feel like it's just me I'm hoping this has happened before and I'm NOT going CHRONIC and god bless the CHRONIC'S I don't know how you do it. You've got to have some good tips I'm sure. THANKS with all my heart to you all.
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seasonalboomer
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Re: AM I GOING CHRONIC?
« Reply #1 on: Sep 29th, 2006, 11:47am » |
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Welcome to Clusterland!
Sorry to hear your cycles have gone all goofy on you. You are not alone. From what I understand many of us go years as though there is a precise timer and then the whole thing goes kablooey and our cycles start popping out of nowhere. Most importantly, for your peace of mind, this is not a clear indicator that you might be headed toward going chronic.
Some cycles are longer. Some shorter. Try not to worry about going chronic. There's a whole lot of ground between what you're presently experiencing and actually having chronic CH.
As for your doctor it sounds as though he's recommending the right stuff. Pay particular attention to the Oxygen recommendation. If you can kill most of your headaches with pure O2 in less than 10 minutes it cuts the need for imitrex. I just had a wierd summer cycle where I was lucky enough to only have to stick myself once with Imitrex and the rest all went down with O2. A lot of us swear by it. Then, you'll see your doctor's concern over Imitrex frequency is lessened.
O2 is cheap and effective for most of us. See the link for O2 information. Youneed a non-rebreather mask and a regulator that delivers 10-15 lpm. Don't accept anything else.
Best of luck. Others can cover your questions regarding Pred and Verap.
Scott
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seasonal boomer
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chewy
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Chronic is year of CH with less than 14 consecutive PF days with or without meds.
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Jonny
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Re: AM I GOING CHRONIC?
« Reply #3 on: Sep 29th, 2006, 7:01pm » |
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Nope
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Guiseppi
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Re: AM I GOING CHRONIC?
« Reply #4 on: Sep 29th, 2006, 7:24pm » |
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This year seems to be the year for weird cycles. I've soon oodles of people saying their cycles won't stop. I used to be able to set my watch by my cycles but this year they went beserk! Chewey gave you the definition of chronic so you can see you're probably not there yet! . Your doc is right, that's too much trex! Give the oxygen a try but read the link first. At low rates or at anything less then full strength it's useless. You need a regulator that'll push 15lpm, a non rebreather mask, and you gotta start it as soon as the eyelid droops! Wishing you a break, these things suck.
PS when I take prednisone it always stops the headaches, but as soon as I stop the pred the headaches come back far far worse then before the pred, it angers the beast!!!
Guiseppi
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Chonas
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Re: AM I GOING CHRONIC?
« Reply #5 on: Sep 29th, 2006, 9:24pm » |
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Long cycles, too much pain, lack of sleep, desperation... Suddenly the so needed break takes place, it's remission time!.
Again and again I've asked to myself the very same question, and finally the beast took a vacation.
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Here we go again...
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TonyYZF
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Re: AM I GOING CHRONIC?
« Reply #6 on: Sep 29th, 2006, 11:58pm » |
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Hey Murnahan,
Sorry to hear about the turmoil. Not having much first hand experience (disclaimer) concerning CH, I have had some experience with steroids for another med issue. Did you taper off the roids? They tend to have rebound effects which could possibly lead t headache rebounds. Sounds like your doc has a clue though so I would tend to assume he/she tapered you off. My understanding is that the roids are only supposed to help you get through until the preventives (verapamil) kick in. Watch out tor a med induced cycle. I. E. taper off the roids to reduce the risk of rebound.
Just a thought.
PF wishes.
Tony
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MJ
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Re: AM I GOING CHRONIC?
« Reply #7 on: Sep 30th, 2006, 1:04am » |
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murnahan,
The prednisone tapers work like you describe for many.
The pred gives some a much needed break and then once your off it the CH returns.
The idea with the verap is that it can take effect while the pred is giving you a rest as apparently it takes some time in your system to work.
I dont think its necessary to take the combo its just that the pred helps during the interim period.
Verapamil appears to be a godsend for many.
Verapamil unfortunately doesnt work with me and with many others the thought is, its capable of extending a cycle into chronic dimensions.
The good and the bad. "Welcome to clusterland".
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MJ
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Carl_D
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Don't worry about going chronic. Can't speak for others, but my first couple of cycles were brief, and then they got longer and longer each cycle. I had them for over 10 years though before I went chronic.
Just hang in there. The end of this cycle will come soon enough. I think the weather being crazy everywhere is what is throwing alot of people into hard cycles.
Peace,
Carl
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Bob_Johnson
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Re: AM I GOING CHRONIC?
« Reply #9 on: Oct 2nd, 2006, 7:05am » |
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Curr Pain Headache Rep. 2002 Feb;6(1):65-70.
What predicts evolution from episodic to chronic cluster headache?
Torelli P, Manzoni GC.
Headache Centre, Institute of Neurology, Strada del Quartiere, 4, Parma 43100, Italy. paolatorelli@libero.it
Over the last few years, attention has increasingly been focused on the evolution of cluster headache over time. Predictive factors have been identified that are correlated with an increased risk of unfavorable evolution from the episodic form to the chronic form of cluster headache. Late onset, the presence of sporadic attacks, a high frequency of cluster periods, and short-lived duration of remission periods when the headache is still in its episodic form all correlate with a possible worsening of the clinical picture over time. The reasons for evolution of episodic cluster headache to chronic are still unknown, but some factors, such as head trauma and other lifestyle factors--eg, cigarette smoking and alcohol intake--have been suggested as having a negative influence on the course of cluster headache over time.
PMID: 11749880
------------------------------------------------------------------------ --------------------------------
J Headache Pain. 2005 Feb;6(1):3-9. Epub 2005 Jan 25.
Chronic cluster headache: a review.
Favier I, Haan J, Ferrari MD.
Department of Neurology, K5-Q Leiden University Medical Centre, 9600, 2300 RC Leiden, The Netherlands.
Cluster headache (CH) is a rare but severe headache disorder characterised by repeated unilateral head pain attacks accompanied by ipsilateral autonomic features. In episodic CH, there are periods of headache attacks with pain-free intervals of weeks, months or years in between. A minority of patients have the chronic form, without pain-free intervals between the headache attacks. Chronic CH can occur as primary or secondary chronic CH; the rarest form is episodic CH arising from chronic CH. In this article, we give a review of the chronic forms of CH and focus on demographics, clinical manifestations, social habits, predictive factors, head injury, genetics, neuroimaging and therapy. It is remarkable that little is known about risk factors that make CH chronic.
PMID: 16362185
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Bob Johnson
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