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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Suckle the Teat of Verapamil
        
(Message started by: superhawk2300 on Apr 12^th, 2006, 10:00pm)

Title: Suckle the Teat of Verapamil
Post by superhawk2300 on Apr 12^th, 2006, 10:00pm

So last week or so it appeared I was ending my cycle, which has lasted 2 times as long as my longest one.

So I quit suckling from the Verapamil teat (quit taking them) and Vola'! The Beast returns.

As long as I've been on my fairly heavy dose of verapamil I am now down to 2 attacks a week, instead of everyday for 2 weeks, one day off, repeat.

Is there a way I can "safely" reduce my verap, or experiemnt with getting off of it? part of me thinks staying on it may actually be keeping me in cycle - I've NEVER hada cycle this long and this is my first ride on the Verapamil express (toot toot)

Any experienced verap peeps out there got any ideas?

Jamey

Title: Re: Suckle the Teat of Verapamil
Post by JJA on Apr 13^th, 2006, 12:41pm

You are probably aware that a lot of people suspect that verapamil extends a cycle. Even if it does extend the cycle, 2 headaches a week might be a pretty good deal, I guess.

I have a question for you. Did you stop the verapamil gradually or suddenly? You should probably ween yourself slowly...talk to your doctor.

Jesse

Title: Re: Suckle the Teat of Verapamil
Post by E-Double on Apr 13^th, 2006, 12:50pm

I am now over 2 yrs chronic and this "cycle" was the first of which I used any medication. EVER! I used to only have 2 brief 4 week cycles per year and then it changed to 1 long cycle that has not ceased. Was it the meds? I couldn't tell ya.

I was on high doses of verapamil for the past 2 years.
I finally said screw it and decided to detox.

Each step down I would get whacked yet each step down it got easier.

I am now off all meds completely and the hits are shorter and seem less intense.

PF wishes,

E

Title: Re: Suckle the Teat of Verapamil
Post by NotH20 on Apr 13^th, 2006, 2:17pm

My mother suffers w/ headaches as well...not specifically diagnosed w/ clusters - but we all know that routine. She calls the medicine battle a "crap shoot" - we never know what meds work, for how long and at what strength. Is the cycle over or did the meds work???? UGH very frustrating!

Mia

Title: Re: Suckle the Teat of Verapamil
Post by chewy on Apr 14^th, 2006, 7:06am

My rule of thimb is I dont start reducing the verap until I've had 2 weeks free of pain and full of sleep.

Title: Re: Suckle the Teat of Verapamil
Post by superhawk2300 on Apr 20^th, 2006, 7:32pm

It seems the cycle is over - and I just quit the verap cold turkey.

I tried 2 or 3 times (depending on how you look at it) to wean myself off of the verap, but the demon would keep coming back. In the end I just quit taking it when "I felt like it" and I've had some very small headaches and shadows but thats all.

I will think twice before stating the verapamil next cycle. I don't think Ilike it at all!

JAmey

Title: Re: Suckle the Teat of Verapamil
Post by Geewilly on Apr 20^th, 2006, 11:54pm

This is the first post I have ever made on this site as I have been a silent viewer for 3 or more years here. Some very helpful information here on this site but I will tell you that I will never med again.

I remember at age 14 having my first CH but at that time just figured it was a sinus headache or something. It was not until I was 18 when I started to think maybe I had a brain tumor or something more serious than just a headache.

I was 21 when a doctor actually hit the nail on the head with diagnosing as a cluster headache. Then he proceeded to treat me with Vicaden! We all know now that Vicaden is major no-no and only makes things worse.

I went to a Nero at age 30 and he did the verap...Pred taper and I loved that it killed that cycle in about 2-3 days on it. Next cycle was a nightmare and I regretted ever upsetting the beast with trying to trick it with that treatment.

I use to have about a 2-3 week cycle and since then we are talking no less than 2 month and more along the lines of 3-4 month cycles because of one damn treatment!

I see a common theme coming from these threads on this site and that is to detox. People who have been on meds to treat this untreatable infliction (at this point anyways) are no better off if they had never taken one med to start with. I do exclude those chronic people as I do not blame anyone who has to deal with this more than 1-2 months of a year to seek any kind of relief.

Not to discredit any treatments on this site but in my opinion focusing on upping meds (or decreasing) of any sort is futile as we all know 150 mg for joe may not work for John. Perhaps if Joe and John had never medicated then we could compare headache cycles more evenly and possible triggers.

From the medical community I would be on Lithium now and still visiting these board to discuss my pain:( I say those who can or are willing ...stop meds until they know what they are a medding you for. Do they know without a doubt what is causing the pain?

I would stick with your old time of dealing with and try things like RB and the hoopla on Kudz than to dose up on costly meds. O2 is pure and great and that is even where the hardcore turn to. If a root or a can of RB can do what O2 does then why take the meds? Maybe I am wrong but I have never heard of Verap/Pred totally removing the CH's. Not to mention the more pervasive treatment of meds that are far and beyond Verap.

I hate heat, in cycle I can lay comfortably in a nice warm bed and then wake with monster. I can then the next night make sure the room is ice cold and no monster...just a shadow. Some people are opposite....how the hell do you prescribe meds to this madness?

The way it is being treated for our condition is flipping a coin. I will tell you this and I am definately no doctor but there is something that works for every CH no matter if one hates heat or cold. At this point why take the Verap/Pred route? It fails over and over and over and over. None of us would be hear if it was treatable by a Doctor or Nero.

Title: Re: Suckle the Teat of Verapamil
Post by superhawk2300 on Apr 21^st, 2006, 8:30am

Thanks for coming out GeeWilly!

I can't say "for sure" that my cycle time was increased by the verapamil, but this is the first time I was on it ( I usualy just responded to Pred) and my cycle lenghtmore than doubled, from 4-6 weeks to over 15! And like I said, getting off the Verap really kind of stunk.

I don't think I will do the Verap again. Now that I have 02 I will use that and keep a supply of Relpax for when it doesn't work, or I am at work and can't afford to have an attack.

I relate very much to your post, when I was in my late teens I thought I was having sinus headache as well, so I took a very hot shower to try to drain my sinuses, and remembering that day is how I knew I was a "cold" person - that shower made my headache 100 times worse in 3 seconds flat! So I did experienment with cold and it does help my headaches as well - too bad my wife is one of those "cold people w/o headaches, meaning she is always cold! It couldbe 80 degrees and she's like - "ooh its a little cold out".

That settles it - new wife time! Any takers?

Seriously thanks for your post - I feel better about telling my doc no verapamil next time.

Jamey

Title: Re: Suckle the Teat of Verapamil
Post by Dave on May 21^st, 2006, 12:15pm

I had a cluster once that lasted a ridiculous length of time. Went off the Verapamil after a few months. The CH's came back. Went back on for a few months. Stopped. They came back. Went back on...

Eventually the cycle ended. I don't remember how many months it lasted.

Sometimes you get clusters like that. It does not mean you're chronic.

In my situation, I just stayed on the Verapamil until the cluster ended. The Verapamil was effective, and the cluster did eventually end, and I went off the Verapamil.

Title: Re: Suckle the Teat of Verapamil
Post by jon019 on May 29^th, 2006, 9:59pm

Hi Geewilly,

quote

"Maybe I am wrong but I have never heard of Verap/Pred totally removing the CH's. Not to mention the more pervasive treatment of meds that are far and beyond Verap."

unquote

Gee whiz, I think I've seen lots of folks on this site who have had success with exactly that combo. Sorry it doesn't work for you but please don't trash it.

Personally, a solu medrol IV and taper STOPPED my nightmare cycle September 14, 2005 (at 200PM to be exact) along with preventative verapamil at 480 mg. PF since and juggling the verapamil depending on shadows (still lots but beats the constant 8-10 kips which drove me back to meds after 7 years of STUPIDLY (speaking of myself, we all gotta make our own choice) drug free cuz
I thought I was some kind of martyr(in retrospect).

Avail yourself of what's out there. Not many choices.

Regards

Jon

Title: Re: Suckle the Teat of Verapamil
Post by Guiseppi on May 29^th, 2006, 10:08pm

I'm with Jon on this one. While I admire those who can ride it med free, I can't. With a combo of prednisone tapers, lithium, cafergot, imitrex and oxygen, I have my life back again.

I still get hit, but with about 28 years of experience to draw on, I can confidently say my medications reduce both the severity and the frequency of my attacks. In exchange for the minor inconveniences the medications cause me, I can again be a father, a husband, and a relatively normal(and that is a relative term) person.

Guiseppi

Title: Re: Suckle the Teat of Verapamil
Post by kcopelin on May 30^th, 2006, 9:59am

So, for me, on one hand verap seems to be helping abit-cuts the number of hits down. On the other hand, this cycle has lasted 14 months now-is the verap that has done this? CHs mutate and treatments that worked last time might not work now, and what didn't work then might now. Very frustrating.
I admire anyone who has the guts to do this med-free, but I'm not one of them. I have some quality of life now-as long as I never relax.
Last trip to neuro the question was "Increase verap or wean off it?" We decided to increase.
PFDAN to all,
kathy

Title: Re: Suckle the Teat of Verapamil
Post by Geewilly on May 30^th, 2006, 11:49pm

Sorry but to me I have yet to experience or read of a Verap/Pred to be a succesful preventitive. For every post made of its success I could point to 10 that shows it either stopped working (after jacking up dose to the max)or possibly prolonged cycle, then move on to heavier meds. I look for relief just as much as anyone else but to be honest to constantly go to cocktail to cocktail just makes you wonder if your own way of dealing with them before was just as effective.
I appreciate this website TONS! I think it is good that we try things but I would say becareful telling everyone that Verap/Pred or any prescribed medicine is helping. Keep in mind that the nature of these headaches are so unpredictable that what would have happened if you had not taken anything for them? I will say that Kudza took me out of this cycle in 2 weeks with minimal pain (only tried it after finally submiting to 8 days of kip 9's), Verap/Pred broke a cycle of mine in 2 days (a few years back and ever since I have had the longest cycles I ever did before). So I am very skeptical about the Kudza though and worry that I just screwed up and the beast has already adapted to it and will show me the next time around that It will not be fooled again and will make me suffer even longer.
Sorry for sounding like such an ass but where would you go in recommending preventitves to a person? Well John Doe it seems you ran the gamut of Verap/Pred it is time we step you up on Lithium. I know the worst these things can dish out just like all of you do as well. I just wonder though how much we can give credit to the meds. I have suffered since 1986 and never took anything other than OC until 2001 and I miss the cycles I use to have from 86-01. I will say I never knew (until I found this site)that people suffered from these chronically. I would try anything under the sun at that point too. I am posting this in regards to people that have somewhat of a short cycle in the range from 1-3 weeks. If you do fall in that category my suggestion is (at this point) leave the doctor out of it. I would give almost anything to only have to deal with them at 3 weeks tops and I sure would not be telling you to med on such a short cycle.

P.S. I just ended this cycle, so I may be sounding a little braver than when I was telling my boss I will be out in my car for the next 45 minutes or so while I deal with this mess.

Title: Re: Suckle the Teat of Verapamil
Post by jon019 on May 31^st, 2006, 12:37am

Hello Geewilly,

quote

Sorry but to me I have yet to experience or read of a Verap/Pred to be a succesful preventitive.

unquote

Geewilly, you are frustrating me. There are LOTs of folks here it has worked for. Damn right it is not the be all and end all. That's why we're all still here. 10-1 failure?, sorry that's bs. Lots of success stories, read the archives for God's sake-sheesh!

quote

I think it is good that we try things but I would say becareful telling everyone that Verap/Pred or any prescribed medicine is helping.

unquote

Gotta say bs again. I have NEVER told ANYONE that ANY med or combo is the answer. Very few here have either unless they are trolls or nut jobs. There aint one, we AGREE, but some work for SOME and your statement pisses me off. It damn well does work for some of us and that statement above is bogus. We come here hoping to learn what has worked for SOME of us. To dismiss it because it didn't or doesn't work for you anymore will be recognized by the vets here for what it is. I worry about the newbies.

unquote

quote

Keep in mind that the nature of these headaches are so unpredictable that what would have happened if you had not taken anything for them?

unquote

Tried that for 7 years. 7 years of misery. Is that a good enough trial?

Geewilly, I have nothing against you and I wish you PF days, but I have to tell you this is one of the crappiest posts I have ever seen. This condition pisses me off, it has changed my life, my attitudes, and my outlook. To crawl out of the hole I was in has taken all my strength.
This site has been a Godsend. I am grateful every day for ch.com and the man (DJ) who started it. I look forward to your future POSITIVE contributions. This was not your finest hour.

Regards

Jon

Title: Re: Suckle the Teat of Verapamil
Post by Geewilly on May 31^st, 2006, 1:33am

Jon, call it what you want and if it pisses you off or others so be it. But sorry Verap/Pred has never on these boards been what you want it to be. You can look in the archives alnight and see the failure rate of it in the whole scheme of things as a preventive. How many here that are veterans have been there done that and has moved on to other methods? Drinking goat piss on a full moon is as succesfull as not taking any Verap/Pred just as someone who has taken Verap/Pred in some cases.
I was simply stating that if you have short cycles than I totally think it is silly to go on Verap/Pred or worse meds.
You start playing around with blood pressure because of 3 weeks out of 1 year or 2 then maybe you should just drink goat piss on a daily basis. If your one who normally has longer cycles then go for it. But alot of the site does make it seem that everyone who suffers this should be running to the doctor for this and that! I am putting out a point of view that you obviously disagree with and that is I think there has been way too much emphasis on Verap/Pred or worse meds for those that deal with it in 1 month out of 1-2yrs. However you read these boards and seems everyone is on some heavy ass meds. I think this forum is just as helpful for those that choose (or voice opinions) on a med free ride with the beast until its gone.

Title: Re: Suckle the Teat of Verapamil
Post by paul2006 on Jun 28^th, 2006, 10:11pm

I don't know how to put a link to my first ever post, so I will just say this...

For me [recently confirmed chronic by a neurologist], verapamil is a godsend. I started on it after other meds didn't work much and now the kip 10s are less common. I was thinking stupid thoughts before starting the verap and am here because it has literally saved my sanity and probably my life. I cannot reccomend it highly enough.

For people who are episodic, I cannot say, but for me at least, it works!! Not pf by a long shot, but kip 5-6 four times a day, every day is heaven compared to 4 kip 10s.

I agree that if I was episodic, I would not want verapamil. I was episodic for 6 years and during that time, with hindsight, I don't really think I ever really had a kip 10. Those came when my life turned upside down and the cycle didn't stop.

I am sure I am not alone.

Title: Re: Suckle the Teat of Verapamil
Post by Katherinecm on Jun 29^th, 2006, 11:18am

on 06/28/06 at 22:11:01, paul2006 wrote:

Thanks for coming out of the woodwork Paul! Verap didn't help me but it does help many people, and it's great to end this argument by having an example.