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        Cluster Headache Help and Support >> Cluster Headache Specific >> Preventing CH
        
(Message started by: example1 on Jan 25^th, 2006, 3:24am)

Title: Preventing CH
Post by example1 on Jan 25^th, 2006, 3:24am

Title: Re: Preventing CH
Post by Bob P on Jan 25^th, 2006, 7:39am

Don't try it with a pain killer. What will happen is the beginning, lower level, pain will be blocked. Eventually it will reach the level that the pain killer won't block it. By then it's too late for other abortive measures to work and you'll be in for a real head banger.

You could try taking a longer acting abortive like Amerge or Frova around 8:30 to see if it will keep the attack from starting but not the pain killers.

Title: Re: Preventing CH
Post by chewy on Jan 25^th, 2006, 7:52am

I've tried everything under the sun as an early intervention abortive. Legal and otherwise.

Nothing has worked and most resulted in a greater victory for the beast.

Title: Re: Preventing CH
Post by Bob_Johnson on Jan 25^th, 2006, 9:19am

: 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;44:1013-1018).

Title: Re: Preventing CH
Post by bluebrain on Jan 25^th, 2006, 9:28am

Dear Sir, have you ever considered Psilocybin. I would like to discuss the use of Verapamil, Lithium ion, Immigran and alikes contra Psilocybin with you. Yours sincerely BLUEBRAIN.(bluebrain@pc.dk)

Title: Re: Preventing CH
Post by rbmb on Jan 25^th, 2006, 1:20pm

Relating to preventing HAs, I've been using DHE as an abortive for some years now when in cycle, which is the way it is supposed to be used. My HAs are very predictable.....2 hours or so after I fall asleep. My neurologist suggested taking a shot before going to bed, which I did for a few days towards the end of my last cycle and it worked. I stopped taking the shots and the HAs didn't return. My cycle was coming to an end anyway, but sometimes it seems like it takes something to "break the cycle".
As another poster mentioned, I wouldn't use narcotic pain killers.......they are not effective for CHs and can lead to dependence and/ or rebound headaches.
Rich

Title: Re: Preventing CH
Post by Beastfodder on Jan 30^th, 2006, 6:40am

No to pre-emptive pain killers. Simply doesn't work and will screw you up.

From my perspective it's alternatives to prescription drugs all the way - both in aborting and preventing headaches. O2 and clusterbusters works for me - good luck in your search.

Title: I hate to admit this, I know it was stupid, but
Post by Richr8 on Jan 30^th, 2006, 6:02pm

I took an emiptran (relpax) before a party once so that I could enjoy a couple of drinks and it worked. Never did it again, but I got through the party and the night and went right back on cycle the next day with what seemed like my regular pattern kip 7-9'rs. Probably shouldn't be telling you guys that. Oh well. So,in that case, uit worked as a oreemptive, but yo certainly do not want too be taking any more trans than absolutely necessary.

Title: Re: Preventing CH
Post by ray4903 on Jan 30^th, 2006, 8:59pm

Have tried aspirin - all kinds and never worked to prevent - maybe delay or might even cause a rebound - I tried verapamil but no success - Tried to avoid any suspected 'triggers' - chocolate, alcohol, etc -- but they just come when they want.
Am just starting to take a tauerine supplemement now and see if it does anything as just started a new cycle after 1 year - Yippee !!
I do think I found that in my case that avoiding smoked typoe foods and thsoe with nitrates - may cause a cycle over time - but who knows with these demons !

Title: Re: Preventing CH
Post by TxBasslady on Jan 31^st, 2006, 12:47am

Personally, I don't think your question is a stupid one.

The time it takes a narcotic drug to be effective, is not even an issue. However, the rebound headaches you'll get from them will become most important.

There's some links on the left side here.....take some time and read them. Also there are lots of home remedy type methods some of us have used that have been effective. Check out the posts on Melatonin and also the ones on Kudzu.

Lots of luck and PF vibes,

Jean

Title: Re: Preventing CH
Post by FramCire on Jan 31^st, 2006, 12:50am

My new doctor wants me to try to take Mygranol 1 hour before my typical 6pm headache and he thinks it should help me sleep through the night.

HOWEVER, it is expensive and insurance may be tough to get it to cover. Plus, you can only get a certain amount per month covered by insurance because of how the drug is written.

I shouldget my first shipment of it in the mail any day. I'll let you know how it works.

I am taking Melatonin to help with the nighttime HAs, and so far it works OK. (9mgs)

Title: Re: Preventing CH
Post by bobbyj on Feb 3^rd, 2006, 9:03pm

on 01/25/06 at 03:24:56, example1 wrote:

Okay, I gotta ask, but perhaps its a stupid question:

One of the most defining characteristics of cluster headaches (for some) is their predictability. I have to wonder, given that narcotics are ineffective because of the amount of time they take to work, can one preempt a CH by taking something before it sets in?

For instance, for the past few weeks I have gotten a headache at 9:00 am, almost like clockwork (probably 5 out of 6 days or so). If one takes something (say vicidin or excedrin) at 8 is there reason to believe the headache will not hurt as much? Just wondering. Thanks.

this is going to be harsh, I have tried everything. Drugs seems to only piss it off. Now I accept it. I let it have its way with me. This illness needs to relieve itself. I've learned not to interfere with the cycle it's relentless just let do it's thing...3-4 mile runs 3xwk no weights no coffee green detox tea/honey and think good thoughts love and success even if you have to fake it before sleepy time

Title: Re: Preventing CH
Post by Roxy on Feb 3^rd, 2006, 9:21pm

Not a stupid question.

I use the longer acting triptans as a preventative when I know I need to not get hit. I am guessing that you are espisodic and not chronic? I wouldn't suggest this on a daily basis, but it does work when needed.

What other meds have you tried? I would also suggest that if you know it's coming.....make damn sure your 02 is right beside you. It's a pretty safe and quick abort.

Roxy

Title: Re: Preventing CH
Post by gardengal on Feb 5^th, 2006, 6:24pm

I am in my 4th week and am miserable with side effects from verapamil and prednisone. My dr seemed concerned about pred so he had me taper from 3 pills for 3 days..2 pills for 2 days... when i got down to 1 pill I had a CH after 6 nights free. Should I not worry about how long I am on the prednisone? I felt fair for the first week but now if i do hardly anything at all my head feels like it will explode,lots of pressure. Maybe it is the verapamil. I thought the side effects worth it but not if I still have the CH's. How will I know if my cycle is over with these meds? I have always just suffered in the past (I was in remisson for 8 yrs) and they didn't last as long as this AND I would just have 1 a night, now if I have a CH I will have 3 to 5 each lasting for 45 to 90 minutes. I am about ready to go off all med and just suffer through. any advice??My quality of life is so bad I am very depressed and can hardly make it through a day of work with the dizziness and head pain during the day. HELP!

Title: Re: Preventing CH
Post by BobG on Feb 5^th, 2006, 6:31pm

Hello gardengal. Welcome, Sorry you're hurting.

How much verapamil on you on? 250mg? 400? 700?

Some folks get sucess with a low dose and other are way up at the 750mg level.

Title: Re: Preventing CH
Post by gardengal on Feb 5^th, 2006, 6:36pm

just 1 120 mg a day verapamil and the pred are just 10 mg each. they seemed to help for 6 nights,but i haven't been sleeping much,I am afraid to sleep and I don't think I have hardly had a deep REM sleep for days, I hug my oxygen tank all night, sometimes it helps but only with shadows, i have gone into a full blown CH huffing oxygen too.

Title: Re: Preventing CH
Post by PL259 on Feb 5^th, 2006, 6:59pm

on 02/05/06 at 18:36:57, gardengal wrote:

Hello gardengal,
First go to the links to the left. Lots of information. Go to the OUCH site, even more info. 120 mg of verapamil is probably far to little. As a preventive I take 360 mg daily year round for my eposidoic clusters. Plus 02. The pred should be used to break the cycle, on OUCH there is a very good article about dosage and the time frame for taking it. Remember, some people can't tolerate verapamil very well. There are alternatives. READ READ and READ.
Also remember if the 02 has not aborted the headache in 15 or 20 minutes it probably won't help (although I have hung on hoping till I sucked the bottom out of an E cylinder)
Good luck finding what you need.

JImbo

Title: Re: Preventing CH
Post by MJ on Feb 5^th, 2006, 7:03pm

I suffered from 8 - 12 level 10 attacks each and every day in cycles lasting from 4 mo.s to 3 years

I believe I have tried most of all the prevents as well as abortives out there.
Granted I only tried for 20 or so years before I gave up. For me none (except pred) ever did a bloody thing.

Now at last after 10 years without medications a CH prevent and abortive together in one convenient package has been found for me. Its natural, has no side effects, simple solution to make, readily available and with immediate results.

RC Seeds are apparently not for everyone, Why I dont know. (Maybe because a doc cant prescribe them), but they definately work for me.

Trying not to shout about it.

Title: Re: Preventing CH
Post by Kevin_M on Feb 5^th, 2006, 7:07pm

on 02/05/06 at 18:36:57, gardengal wrote:

just 1 120 mg a day verapamil

Pred is usually a stopper until the verapamil can get worked into the system. Tapering off of prednisone onto 120mg of verap would be almost like no preventative at all working for me, resulting in many hits too.

I did a 20 day pred taper while working in 480mg of verap and seeing if that provided protection. At times 600mg is needed and in less intensive periods 360. Speak with your doctor maybe about better preventative protection. I would have never known the verapamil could work if I stayed at 120mg without experimenting further. This has been my experiences.
Everyone is different, most of the verapamil side effects I experienced in the first few months seemed to diminish over time.

Quote:

Should I not worry about how long I am on the prednisone?

It's not for constant preventative use and should be used sparingly for getting adequate preventative built up.

Welcome :)

Title: Re: Preventing CH
Post by roomie on Feb 7^th, 2006, 2:00pm

After several years of suffering from clusters, I finally went to a neurologist. He immediately told me it is a classic cluster.

For immediate relief, he gave me a form of cortisone shot in the base of my head (sounds bad, but didn't hurt).

As a preventative measure, he put me on verapamil. I am now taking 360 mg/day. I didn't notice immediate elimination of the headaches, but the severity of the pain dropped. At this time, I have not had a headache in several months (I credit it to the verapamil).

I also have oxygen at my home. When the pain begins, I start with the oxygen. It works very quickly for me.

Finally, I have been prescribed Zomig. If I can tell it is going to be a bad one, I take the Zomig. The Zomig takes at least 30 minutes to take affect, but totally eliminates the headache.

Title: Re: Preventing CH
Post by gardengal on Feb 8^th, 2006, 9:17am

I won't have to stay on the verapmil after this CH cycle will I? I swear the medicine is prolonging the cycle already. I usually am over it in 3 weeks but this time I am going on5 weeks.

Title: Re: Preventing CH
Post by Dragnlance on Feb 10^th, 2006, 8:33pm

Ok, My 2 cents.

I quit all drugs nearly 3 years ago now, because they were ineffective. At no time did I EVER get more than 2 pf days in a row. Really no differnt now.
While chronic, this week has been worse than it has been for some time. (no changes in life style ect.)
Anyway, I found this site last week. I found a lot of comments on the herb "Kudzu", so I bought some. Since I am drug free, I really am a good test subject. I took the firs pill Tuesday afternoon, about 2:30 pm. (I took off from work because they were so bad tuesday) At 3:30 pm (almost exactly) the current headache snapped. I jerked, and my wife asked what was wrong. I looked at her and told her the monster disappeared.
Now, understand, this headache was only an hour and half into the torture, and they ALWAYS last 3+ hours. This is a constant. Never, and I mean NEVER are they less!!
Well, the break was only 15 minutes before the monster came back, but what a shock.
Since then I get my usual, 4 AM, 10AM and 3PM and 7PM killers, BUT, in the last 2 days, the pressure behind my eye, and the burning in my tell me it is going to kip 9 or 10, and I prepare, and it doesn't go beyond kip 6.
Today has been a long one because I have only had 2 breaks from the monster, but I have not gone over 6 again today. The pressure behind my eye right now says I should be trying to crush my own skull, but I can actually sit here and tell you about this.
While this is only the 3rd day on this, I am staring at the bottle of Kudzu in wide-eyed wonder, as this could, I hope be part of my salvation. I dont believe for a second that it will stop them all, and I also know that I need to get some O2 as a second defense.
I understand there are issues with Kudzu and things like Verapamil, BUT, if you can, you might want to look at this.

Wishing you ALL PAIN FREE DAYS and NIGHTS

Dragnlance

Title: Re: Preventing CH
Post by Kris_in_SJ on Feb 11^th, 2006, 8:25pm

I found that Verapamil at high doses shortened the intensity and frequency of my cluster attacks during cycle. I'm a 3-5 year cycler.

After trying to prevent future cycles from happening by staying on Verap at 240mg/day between cycles, I only discovered it DOESN'T WORK! The Beast gets his way when he wants.

I've now been totally med-free since February of last year, but it took me a full 6 months to wean off the Verapamil without shadows and twinges. I'm now of the opinion that, while meds like Verap are truly helpful in one way, they also extend the length of your cycle.

Does the "idea" of preventatives truly working as preventatives should work? My experience would say "no" unless you follow the advice of clusterbusters.

Just my 2 cents worth,

Kris

Title: Re: Preventing CH
Post by General_Cluster on Feb 12^th, 2006, 1:43pm

I had to take 240 Verapamil twice a day to get reasonable prophylactic relief but still had to inject immitrex (especially if I took the Verapamil 'late' on my 12 hour schedule). Unfortunately Verapamil was not very friendly to the function of my 'little big horn'. I'm trying to see if Depakote ER works - it seems to but I may be coming out of my cluster phase anyway.

Immitrex is way expensive and I can only get 4 injections a month thru my health plan. Has anyone else tried the immitrex tip on using partial injections?

Title: Re: Preventing CH
Post by chewy on Feb 12^th, 2006, 2:42pm

Quote:

I won't have to stay on the verapmil after this CH cycle will I?

You shouldn't stay on it. You will develop a tolerance and it will be less effective during your next cycle.

Title: Re: Preventing CH
Post by Jasmyn on Feb 13^th, 2006, 3:35am

on 01/25/06 at 03:24:56, example1 wrote:

On your question, my experience with narcotics are that they will increase the duration of your hit plus add to the scale of your pain.

Title: Re: Preventing CH
Post by vig on Feb 14^th, 2006, 3:58pm

"I let it have its way with me. This illness needs to relieve itself. I've learned not to interfere with the cycle it's relentless just let do it's thing..."

I thought that was the most disturbing thought in the thread.

Title: Re: Preventing CH
Post by Dragnlance on Feb 14^th, 2006, 10:42pm

Quote:

"I let it have its way with me. This illness needs to relieve itself. I've learned not to interfere with the cycle it's relentless just let do it's thing..."

It is posssible to fear not feeling pain. After a while of being chonic, "NORMAL" means being in pain, and being pain free is abnormal. The really sad thing is, I can almost relate to that comment. I live in a contradiction. I pray for pain free days and quake in my boots when I get them because I am afraid how bad the "day after" is going to be.

Dragn