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Topic: Verap for the episodic CH ... ? (Read 347 times) |
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TonyG1
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Went to the Neuro today (1st time seeing him) and he indicated to me (his opinion I guess) that verap should be for prescribed for ppl who have greater than 2 cycles within a year. He also indicated steroids would be the 1st line of defense for the episodic person (me) who may have a cycle every 2 or 2 1/2 years ... I guess that is ok ... if it works ??? I'm doing very well on the verap (knock on wood) but it does seem to have extended my cycle timeframe. So, he prescribed a dose pack of steroids to try to break this cycle (still getting shadows whispering their sweet nothings to me)  He also indicated I should finish my current Rx of the verelin and he is lowering my dosage on the verap... will wait to see how that works out...
I did insist on a scan to make sure everything else is ok up there. The Neuro indicated an MRI would not indicate much for CH so he ordered MRI/MRA -- He said the MRA would show anything wrong in the old cerebral vascular system ...
The Nurse practioner laughed when I told her my GP gave me Imitrex 50mg tabs... to quote here "kinda like spitting on it, huh?"  When the appointment was over she brought a goodie bag with Imitrex Stat dose, stat dose refills, the nasal spray, etc. -- She loaded me up.
Wishing you all many PFDANs!!
Tony
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| « Last Edit: Mar 11th, 2005, 2:19pm by Tony3901 » |
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Jeepgun
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Re: Verap for the episodic CH ... ?
« Reply #1 on: Mar 11th, 2005, 2:23pm » |
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Verapamil is a preventative, whether you have ONE cycle, TWO, or you are chronic. It doesn't matter. Jeez....
Kudos to the Nurse Practioner for having her shit together and hookin' you up. Last cycle, I got scripts for injectible Imitrex, verapamil, and prednisone. I got the prednisone filled, but didn't touch it. Steroids do funky things to your body.
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| « Last Edit: Mar 11th, 2005, 2:25pm by Jeepgun » |
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TonyG1
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Re: Verap for the episodic CH ... ?
« Reply #2 on: Mar 11th, 2005, 2:52pm » |
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Agree with you on the verap -- One cycle it too many. I think his thought process is stop the cycle, stop the cluster... ??
I'll try it his way (for now  ) Should things go bad as I come off the verap ... I'll have to have a heart to head discussion with him ...  Yep, my understanding is steroids are for short term use ONLY as they can do weird stuff to you....
Many PFDANs to you !
Tony
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pubgirl
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Re: Verap for the episodic CH ... ?
« Reply #3 on: Mar 11th, 2005, 7:53pm » |
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on Mar 11th, 2005, 2:23pm, Frank_W wrote:Verapamil is a preventative, whether you have ONE cycle, TWO, or you are chronic. It doesn't matter. Jeez....
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I don't agree Frank, I think it DOES matter if you are episodic or chronic.
There is mounting evidence that Verapamil may worsen CH in the longer term, therefore for Episodics it may be sensible to "ride out" the cycles if that is possible using aborts and possibly the cortocosteroid TAPERED course to break any really bad cycles.
I think the doctor is right to assess the severity of an Episodic's cycles before recommending Verapamil.
It is an individual decision which should be made on individual circumstances. The main decision maker being the sufferer and whether they feel they can cope or not, but we certainly tell all episodics over here that they need to be aware when deciding that it is very possible prevents MAY make them worse in the long term.
Wendy
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Jonny
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Re: Verap for the episodic CH ... ?
« Reply #4 on: Mar 11th, 2005, 8:06pm » |
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on Mar 11th, 2005, 7:53pm, pubgirl wrote:I don't agree Frank, I think it DOES matter if you are episodic or chronic.
There is mounting evidence that Verapamil may worsen CH in the longer term |
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God Damn!!!! 
I guess my Doc should have told me that....seeing that I have been taking Verap everyday for 14 years and it kills most of my HA's (Along with Lithium)
Once again I feel like a freak 
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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.
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pubgirl
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Re: Verap for the episodic CH ... ?
« Reply #5 on: Mar 11th, 2005, 8:26pm » |
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Jonny, chronics are stuck between a rock and a hard place which I don't envy. You've got no real choice (yet!)
If I got attacks every day, I'd take Verapamil, I'd probably take arsenic if someone said it would help.
The other problem with taking almost any of the prevents if you are episodic is that either you are taking them when you don't need them if you take them all the time, or alternatively you start taking them when a cycle starts, and by the time they've worked, your cycle may end naturally anyway.
All I'm saying is that I think it's not right to automatically suggest all Ch sufferers of whatever kind should take Verapamil which is sometimes what people on here and Doctors do. It needs to be thought through.
W the B
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Kris_in_SJ
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Re: Verap for the episodic CH ... ?
« Reply #6 on: Mar 11th, 2005, 8:29pm » |
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Sorry Wendy - but I can't agree. I'm an episodic and see wonders from Verapamil (480mg/day). My cycles are normally about 12 weeks, but with Verap started soon enough, I actually only get "Trex-worthy" HA's for about 3 weeks. Since my cycles are pretty far apart, I wean off the Verapamil between times.
It usually takes a few months to wean off, but for me that still means 2-3 medication and PF years between.
I'm no doctor, Tony, but I'd sure keep taking it until you're sure your cycle is over. And .... God bless the nurse!
Kris
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pubgirl
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Re: Verap for the episodic CH ... ?
« Reply #7 on: Mar 11th, 2005, 8:35pm » |
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Kris
I'm not saying Episodics SHOULDN'T take Verapamil, just that we shouldn't be automatically saying they should as there are considerations
W
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TonyG1
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Re: Verap for the episodic CH ... ?
« Reply #8 on: Mar 11th, 2005, 10:11pm » |
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I can see both sides of the discussion... being episodic and being on Verap makes it kinda tough to know when the proverbial demon has went back to sleep ... Am I PF due to the drugs ? ... Am I PF due to the cycle coming to a close ? I have been having some shadows but nothing to write home about ... interestingly enough I would / should have been out of the cycle by now (no shadows). Due to still getting some shadows and my past cycle history, I tend to think there is some truth to the theory of the verap at least extending my cycle longer than normal... I asked the neuro today about that and he indicated that it could have that effect.
The doc asked me if my cycle had ended and I honestly could not answer the question because the verap is a definative factor ... Is it the drugs or is it natural order of when the cycle should end ... don't know ...
Never thought I would use the term "natural order" in the context of CH 
BTW Wendy I agree with your statement:
"If I got attacks every day, I'd take Verapamil, I'd probably take arsenic if someone said it would help."
I hope I never go chronic and I feel for ppl who are chronic. Episodic is bad enough when in cycle... I can't even imagine no respite. My hat is off to all the chronic folks out there, although I only wish no one had to endure this damnable condition !!!!
Sorry, got a little long-winded there ... 
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TonyG1
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Re: Verap for the episodic CH ... ?
« Reply #9 on: Mar 12th, 2005, 11:13am » |
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2nd day on the steroids --- 
- I could climb the walls right about now --
- BP is running much higher than normal --
- Flushed and feel sunburnt due to number 2.
- Stomach is yucky.
The silver lining to the cloud -- only 4 more days to go.
Yep, the Neuro and I will have to discuss this one.... I think it be will low dose verap or the following options kick in:
1. Find a new Neuro who will give me the low dose
verap.
2. If the choice is prednisone or nothing at all, refer to
#1.
3. Stick with only abortives and in all cases refer to #1.
I have had no ill effects from the verap -- other than maybe extending my cycle -- but in the same respect it keeps the Kip levels and frequency well managed.
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pubgirl
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Re: Verap for the episodic CH ... ?
« Reply #10 on: Mar 12th, 2005, 5:58pm » |
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Tony
What do you mean by low dose Verapamil? If it is very low there's probably no point taking it
Wendy
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Kris_in_SJ
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Re: Verap for the episodic CH ... ?
« Reply #11 on: Mar 12th, 2005, 7:55pm » |
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Ditto to Wendy ...
I've never gotten good relief below 480mg/day. What do you consider "low dose?"
Kris
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Bob_Johnson
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Re: Verap for the episodic CH ... ?
« Reply #12 on: Mar 12th, 2005, 7:57pm » |
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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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Bob Johnson
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Kevin_M
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Re: Verap for the episodic CH ... ?
« Reply #13 on: Mar 12th, 2005, 8:46pm » |
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on Mar 12th, 2005, 7:57pm, Bob_Johnson wrote:: Headache. 2004 Nov;44(10):1013-8.
Individualizing treatment with verapamil for cluster headache patients.
Blau JN, Engel HO.
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.
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.
Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, |
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This all works for me Bob. Sensable excerpts in my experience.
Kevin M
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| « Last Edit: Mar 12th, 2005, 8:50pm by Kevin_M » |
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TonyG1
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Re: Verap for the episodic CH ... ?
« Reply #14 on: Mar 12th, 2005, 9:57pm » |
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Thus the quandry for the episodic ... when not in cycle verap is not really necessary (low dose = 240mg); however, what works for some may not work for others.
The methylprednisolone is out the door. I started it yesterday ... today, I've had some ugly reactions to it
1. BP is way, way up... god forbid a cluster cause with my BP being up as much as it is Imitrex probably not a good idea til the BP gets to a more normal level.
2. Broke out in somewhat of a rash from the steroids and feel & look like I've got a sunburn.
3. It gave me a headache -- normal type - not cluster. I think it was due to the BP being up so much.
 Damn doctor, damn steroids ... I spoke with the pharmacist who indicated I should not take any more until I can speak with my Neuro
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Kris_in_SJ
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Re: Verap for the episodic CH ... ?
« Reply #15 on: Mar 14th, 2005, 7:49pm » |
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Considering you high B/P, higher doses of Verap would probably help by "killing 2 birds with one stone ..."
Sorry, not trying to make light. I'm also hypertensive normally, but when in cycle, the extra Verap has really helped. My B/P stays within a range that makes the Trex acceptable.
Sorry for your experience with Prednisone. Never had the rash ... just insomnia and a craving to eat small automobiles.
Kris
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TonyG1
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Re: Verap for the episodic CH ... ?
« Reply #16 on: Mar 14th, 2005, 8:41pm » |
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on Mar 14th, 2005, 7:49pm, Kris_in_SJ wrote:Considering you high B/P, higher doses of Verap would probably help by "killing 2 birds with one stone ..."
Sorry, not trying to make light. I'm also hypertensive normally, but when in cycle, the extra Verap has really helped. My B/P stays within a range that makes the Trex acceptable.
Sorry for your experience with Prednisone. Never had the rash ... just insomnia and a craving to eat small automobiles.
Kris |
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I'll just chalk the medrol experience up to a lesson learned on what not to do. The doc is going to wean me off of the verap as I'm episodic and the cycle should be at closure  (he says with fingers crossed). I should know pretty quickly once my dosage goes down. Normally, the trex is fine -- the BP thing was from the steroid.
Small automobiles huh?
Thanks Kris! Wish you many PFDANs!
Tony
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