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Trooper
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Preventative treatment options
« on: Mar 12th, 2008, 11:33pm » |
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I go to the doc. on Friday and I am looking for some new options to discuss with him on preventative medications. Cycle started last Tuesday and is ramping up pretty quickly. I tried Verapamil last year but could not tolerate the side effects. Before that I was on Depakote for two years and it worked like a dream, then last year it stopped. I tried Topamax before Depakote and that was the worst. I have been doing 9mgs. of Melatonin for 3 nights with no success and then bumped it to 12 last night. Was not much help either, I didn't wake up until the beast was in full swing and no way to abort. I figure I will go back to the 9mg. tonight, any ideas on other preventative meds I should look into?
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schlags
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Re: Preventative treatment options
« Reply #1 on: Mar 12th, 2008, 11:50pm » |
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Well I can't necessarily give you any good recommendations, but I can tell you one NOT to try...my neurologist thought Nimodipine would be a stronger calcium channel blocker...and maybe it is, but it also increases blood flow to your brain. Not good, not good at all!! The worst two weeks ever of my clusters!!!
How long did you stick with the Verapimil? I had some serious gas and constipation at first, but it eventually leveled off for me. And although it does let some headaches get through, after the Nimodipine, I'll fart and not poop all day if I have to!!!
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Trooper
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Re: Preventative treatment options
« Reply #2 on: Mar 13th, 2008, 12:05am » |
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I tried it in 2003 with no luck. (I don't think the doc. was perscribing it right though. It was a low dose and I think extended release) It really did not bother me then but when I tried it again last year, it put alot of pressure on my chest and made it kinda hard to breath. It was like my heart was barely beating. I have not had an EKG or stress test since 2003 but I will be talking to him about geting one done asap when I go in Friday.
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lennycohen
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Re: Preventative treatment options
« Reply #3 on: Mar 13th, 2008, 6:20am » |
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I haven't heard you mention lithium yet, many have tried that with success - it's part of my current cocktail, although I can't claim total success yet.
Lenny
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Bob_Johnson
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Re: Preventative treatment options
« Reply #4 on: Mar 13th, 2008, 6:51am » |
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http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting everything following. com/ and then hit enter.
======================================================================== =
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
http://www.plainboard.com/ch/chtherapy.pdf
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Bob Johnson
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DennisM1045
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Re: Preventative treatment options
« Reply #5 on: Mar 13th, 2008, 11:42am » |
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There have been a bunch of threads recommending the immediate release formulation of Verapamil over the sustained release formulation.
For my August-November cycle last year I was using 240mg ER Verapamil. It didn't do jack for my CH and caused a lot of issues with dizziness and my HR bottomed out at 48bpm. I ended up abandoning it and just relying on Melatonin (15mg), O2 and Imitrex when I didn't catch it in time.
This cycle I've switched to the immediate release formulation in 40mg pills. I'm up to 200mg a day now (80mg AM, 40mg PM, 80mg before bed) and not seeing the side effects I was on ER. BP and HR have been stable in the mid 50's. My normal HR is 58bpm.
I've only been on it for 8 days now so its too early to tell how effective it is CH wise but I haven't had a major hit since I started it. Could just be the beast f'ing with me though 
-Dennis-
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DennisM1045
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Re: Preventative treatment options
« Reply #6 on: Mar 13th, 2008, 11:47am » |
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Here is the abstract from the paper I used when convincing my Dr to make the change.
http://www.blackwell-synergy.com/doi/abs/10.1111/j.1526-4610.2004.04196. x?journalCode=hed
Quote:Individualizing Treatment With Verapamil for Cluster Headache Patients
Joseph N. Blau, MD, FRCP; Hans O. Engel, FFOM, LRCP&SEFrom the City of London Migraine Clinic.
ABSTRACT:
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
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Trooper
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Re: Preventative treatment options
« Reply #7 on: Mar 13th, 2008, 6:41pm » |
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Thanks for all the advice. I printed out the review from Dr. Rozen a few days ago and already planned to take to my doc. I will discuss the Verepamil agian with him and see what he thinks about the side effects I have had. I am really starting to think Litium may be my last option. I have to admit I am afraid of this option but hearing all the pos. results from people here is making me warm up to the idea a little. After reading the review from Rozen a few days ago, I realised I have spent so much time over the last few years focusing on the abortive when I should be most concerned about the preventative. I have suffered with CH for 18 years now and my cycles were at best twice a year and lasted only a week or 2. Then starting about 5 years ago they changed, coming once a year and lasting 2-4 mos. I keep trying to beat the beast by the same old rules when he has changed the game!
Thank you everyone here for all of your help. I get so frustrated and scared with this. It helps so much to know there are people here that understand and are willing to help.
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schlags
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Re: Preventative treatment options
« Reply #8 on: Mar 14th, 2008, 12:06am » |
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It's a damn shame that nobody much on here can find one common preventative that works universally!!
It's good that you are going in prepared; I know my Dr. was pretty impressed last on my last visit that I had a lot of information with me that I could discuss with him. He shot me down on a few, but gave me the go ahead on some other options, including offering his own. But it felt good to not just have to blindly trust him. Stick with it, we're all pulling for you!
If you can handle it, might not be a bad idea to mention a tapering dose of prednisone if you are between drugs and they won't counteract, even if your old one is only working slightly; I tolerated the nimodipine for a week which was bad...the Dr. gave me a week of the pred. after that week and didn't get any headaches during the time I was using it(after which you-know-what hit the fan!!) The downside of that was you feel like you want to crawl out of your skin, but again, was a small price to pay for a week of relief. However, some people aren't very tolerant of it either, but I figured, heck, it's only a week.
And assuming you are already doing oxygen, right? How, oh how, did any of us put up with the beast without it? Most of the time it works well enough to stop the beast.
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RichardN
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Re: Preventative treatment options
« Reply #9 on: Mar 14th, 2008, 12:59am » |
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If you don't have 02 . . . don't leave your doc's office next visit without a script. And don't be dissuaded because "your insurance won't cover it" . . . even if that's the case, 02 is cheap, easily used and minimal or no side effects.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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Trooper
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Re: Preventative treatment options
« Reply #10 on: Mar 15th, 2008, 1:30am » |
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Update on doc visit. We decided to try Neurontin for the preventative and he wrote me a script for the Imitrex injections. This is basically my last stop before Lithium. My husband and I would like to have a baby soon and unlike Lithium and Depakote, Nuerotin has not shown any links to pregnancy complications or birth defects. I hope the stuff works.
As far as the Lithium and O2 go, he would prefer I go to a Nuero for that because he is just not that familiar with my degree of Clusters. I asked him if he had any other cluster patients and he said he had a few other episodic but that I was the worst. I am going to try and get in with a Nuero. There are some good cluster ones in my area but it takes sooo long to get in with them. I play this stupid wait and see game every year with this shit and my cycles get worse and worse and I suffer needlessly. Seems like every year I am just left frustrated and full of questions. By the time you think you may have found something that works your headaches end abruptly and you wait and wait until your next round only to find it doesn't work at all. Always always chasing my shadow.
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DennisM1045
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Re: Preventative treatment options
« Reply #11 on: Mar 15th, 2008, 1:16pm » |
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Hi Trooper,
In cycle or not you should make that appointment with the Neuro.
I didn't get an appointment with mine until after my spring cycle last year. At the time I was still looking for a firm diagnosis though I was pretty sure it was clusters.
When we met I was able to discuss strategy with him and get set up with perscriptions for a preventative (Verapamil and Neurontin), O2 and Imitrex. That way when my fall cycle started up I was ready. All I had to do was dust off the O2 tank and give it a shot.
It worked!
So don't wait. O2 is the way to go when carrying a baby. No side effects and no effects on the fetus.
If it works for you as well as it works for me you won't regret it.
Good luck hun...
-Dennis-
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