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Travis1980
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Episodic to Chronic
« on: Jan 20th, 2008, 12:47pm » |
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Hello Everyone,
I was wondering if anyone has any info regarding the shift from episodic to chronic CH. I am currently in a cycle that is three times longer than any other I have had and I am scared to death, as everyone can relate I am sure, that this is not going to end. Also, I tried the clusterbuster method at the beginning of the cycle, but had to quit because of my dependance on injections. O2 does nothing for me. Could this possibly have turned me chronic? Also, I'm seeing my neurologist tomorrow. My meds are: Verapamil ER 240mg, Imitrex 4mg, Magnesium, Melatonin, and I'm at the end of a Prednisone taper. Nothing is helping prevent Any suggestions on what to discuss with the doc? Thanks a million
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Bob_Johnson
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Re: Episodic to Chronic
« Reply #1 on: Jan 20th, 2008, 12:53pm » |
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Headache. 2004 Nov;44(10):1013-8.
Individualizing treatment with verapamil for cluster headache patients.
Blau JN, Engel HO.
Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-101 .
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SLOW-RELEASE VERAPAMIL
Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.
“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”
Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.
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Verap dose on the low side for CH.
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Bob Johnson
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E-Double
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Re: Episodic to Chronic
« Reply #2 on: Jan 20th, 2008, 12:57pm » |
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Bob J no doubt will post a great article that I unfortunately have not saved regarding the predictors of episodic to chronic ch.
I am not unlike you where I was in that panic mode....
My cycles used to be 4 weeks and I was in and out.
I am currently in a 4yr cycle (chronic)
Here's the deal.....
As time went on I said F#$K it and decided that regardless of it someday ending or not....It hurts but after the pain is NO PAIN. Got it =)
You have to stay positive and try to not fall into anxiety mode.
Stick to a regular schedule as best you can and enjoy the moments that you are PF!!!
I also made a decision to come off all of my meds a couple of years ago and that helped me mentally as well.
good luck, stay strong and welcome to the family
BREATHE!!!!!!!!!
Eric
ETA: you see how quick he is and how good I am lol...different article but I knew he would be posting as I typed.
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| « Last Edit: Jan 20th, 2008, 12:58pm by E-Double » |
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Bob_Johnson
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Re: Episodic to Chronic
« Reply #3 on: Jan 20th, 2008, 12:59pm » |
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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
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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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Travis1980
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Re: Episodic to Chronic
« Reply #4 on: Jan 20th, 2008, 1:01pm » |
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Thanks Guys,
I am at the point where I really don't want to take any more medication. It almost feels like it's perpetuating the whole thing. I tried for a couple of days to taper off of everything, but I crack during my daily Kip 9. I will give this Verapamil info to the doc.
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imfareware
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Re: Episodic to Chronic
« Reply #5 on: Jan 20th, 2008, 8:28pm » |
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Hang in there!!
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Redbull_Junkie
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Re: Episodic to Chronic
« Reply #6 on: Jan 21st, 2008, 2:58am » |
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howdy Travis
Have you tried redbull or any Taurine/caffine energy drink,not sure if they react with any of your meds but they are worth a try....they did it for me this cycle
painfree wishes to you
Kev
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artonio7
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Re: Episodic to Chronic
« Reply #7 on: Jan 21st, 2008, 7:08am » |
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Dude... I went chronic also and... all I can say is get yourself a prescription to O2 15-25 lpm with a non-re-breather mask... the trick is to make sure that you're using it properly and at the right time.
CH does not have to rule your life... you learn to live in between the hits and when properly armed with either good preventatives, good abortives and an understanding, life is not so bad... also the support group here is a plus plus plus.
Stay positive and know that you can be a part of our family... we'll do what we can to help, whether it's just listening or sharing what we know.
modified for content
with warm regards,
Tony
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| « Last Edit: Jan 21st, 2008, 7:12am by artonio7 » |
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Callico
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Re: Episodic to Chronic
« Reply #8 on: Jan 25th, 2008, 7:48pm » |
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After almost 20 yrs I went chronic a little over 4 yrs ago. At first I was despondent about it, and thought it would never end, but after this time whenever I get a break for a few days to a couple of weeks (about twice a year, never more than 2 weeks) I find I am dreading the hits coming back. The PF time while enjoyed is filled with hope that MAYBE it is gone for good, or at least for a long time, but also is filled with the dread of its return and this disrupts my whole schedule. It is actually easier for me to deal with when I know when I'm getting hit and can plan my life around them. Much less disruptive. NOT that I would mind if it left for good!!! 
On the Verap, I'm wondering if you are anywhere near high enough. I was up to 720mg a day before I found it to do me any good at all, but like Eric I am now med free, and think I can deal with them better. I do use a little Kudzu in place of the Verap, and I think it is working as well if not better, and I don't have the side effects.
Jerry
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Patrick_A
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Re: Episodic to Chronic
« Reply #9 on: Jan 25th, 2008, 9:23pm » |
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My 1st time with the Prednisone/Verapamil combo I was taking 960mgs of Verapamil to knock down my CH's. But forunately this time I only had to take 240 mgs. I don't know why the large difference. I just know if you take the large doses you will need to get it ok'ed by ur Neuro because it will definitly make your heart do flip-flops.
Good luck, PA
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maryo
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Re: Episodic to Chronic
« Reply #10 on: Jan 26th, 2008, 9:12am » |
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Hi Travis,
Entertaining the idea of being chronic is kinda like receiving some kind of cancer diagnosis. You don't state how long your usual cycles are except to say this one is three times longer. If your usual cycle is one month, than 3 months is within the bell curve of normal for episodic clusters.
I went three years of chronic dribs and drabbles easily aborted with oxygen. That was after 25 years of episodic. I thought maybe some deity was rewarding me for good behavior in ife. Then came menopause. I had asked Dr. Greg back 5 years ago what happenes to female clusterheads after menopause because in the case of migraine (which I also had), they go away. His answer -- "They become chronic" -- was met with complete denial.
Don't go off meds. That's not going to help you. But I agree with a swtich to short acting verapamil 3x a day. I had to direct my doc to make that change, and constantly bug her regarding increasing dosage and following up with EKG. I increased 20 mg per dose every 5 days. It's hard to be that patient. I uppsed the melatonin to 15 mg. I also added a nightly clonopin. This and the oxygen for break-throughs was what finally worked.
If oxygen doesn't abort, experiment and fine the best option for you. For many it's imitrex. In previous years things what has worked for me: a glass of strong coffee; a cold pack on the back of my head (the large size you keep in your freezer); cafergot (I have resorted to grinding it to powder kept in a cup bedside for quicker absorption which I mix with juice to get it down the gullet).
I completely relate to the sense of hopelessness. The stress of misbehaving clusters has to be counterbalanced by positives. You know what adds to your life. Be sure to do them, and more of them -- activities, friends. The dog that was practically my third son died last June. When I was mid-worst cycle ever in December I finally got another dog. Snowshoeing at night with that bundle of joy, love and optimism keeps me from going quite so low. In Austin you'll just have to figure it out without the snow!
Stay the course and good luck!
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sandie99
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Re: Episodic to Chronic
« Reply #11 on: Jan 26th, 2008, 10:47am » |
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Travis,
I recall very well that fear: am I going chronic...? What will I do if I'm a chronic??? Guess what, then it happened. And I didn't fall into pieces. I learned how to function, learned a lot about myself and my closeones.
I'd say that it's too soon to say that you'd be chronic and hope that it won't happen. But if one day you would become chronic, it's not the end of the the world.
Now I'm episodic and I must admit that I hate it... In fact, there are days in which I think that I could function better when I was chronic, because back then I knew that I will get hit and now I'm not sure what the day will bring with it; will the remission stay or will there be shadows or hits... But the biggest lession behind all this for me is this: never let ch or fear control your life. Do your best and deal with the pain when it arrives. 
Sanna
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Travis1980
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Re: Episodic to Chronic
« Reply #12 on: Jan 26th, 2008, 11:01am » |
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Thanks Sanna,
In the past, I have had short cycles that I could easily forget about and go back to being my insanely active self. Now I've spent the better part of three months afraid to leave the house and I realize that I'll have to make some changes in perspective to get through this. I think you are right, though. The uncertainty of when I will have to deal with a hit is the most difficult part. My hits are completely erratic. So I'm pretty much always worried about it. Thanks for the input!
Travis
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