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Trackle

new to verapamil

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So the saga continues lol. I had my full brain MRI and it came back normal (no surprise there). My neurologist had put me on indomethacin to rule out CPH headaches (a different form of TAC headache) and it ended up giving me a 12 hour long migraine. So she took me off of that. Now we are back to cluster headaches (obviously what I have suspected all along) so she put me on verapamil. I take the lowest dose 3 times a day because I already have low blood pressure. I have been taking it for about 3 weeks now, and though it has given me some relief (I have managed to sleep through about half of the nights since I've been taking it) it has not stopped the attacks completely. I didn't expect 100% relief or anything, but I feel like it's not doing as much for me as it does some people. The attacks I have are less severe now I should add. My question is - Is there something I could be doing to make this work better? Any good tips? Should I take it a certain amount of time before bed? Or should I ask my neurologist of she can up the dosage? Any advise would be appreciated. Also - I am still thinking about trying to abort the cycle with mm - is it ok to take the verapamil while I do that? My next neurology appt is not until the end of March :(

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G'mornin Trackle 

Many folks have success busting while taking low dosages of Verapamil.  And, for many, it takes a significantly high dosage to be effective....up to 960mg daily which, since you already have low bp, I doubt your doc will be on board with.  It also causes severe constipation for some in those high dosages.....I heard our beloved Hollywood Dan of Nat Geo fame speak at the 2010 clusterbusters conference in Portland....he brought the house down telling us that what it did for him was to make it cost $2000 to take a crap after he had to be hospitalized for severe blockage!!  Lmao!  My personal experience is like yours, my bp runs on the lower side so could only get to 360mg/day and it just helped reduce the number and severity of the hits, but, my cycles got longer in duration while I was on it.

I've taken all the standard ch meds in my 30 year plus battle and vitamin M is by far the most effective......pharma free since I began busting in 2010 with the exception of a couple of trex jabs when I got caught away from O2 but that was over 5 years ago...nothing but shrooms and O2 since Nov of 2011!!!!

DD 

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Good advice from Dallas Danny.  I would add the getting O2 is very important if you don't have it already. It's service to purposes 1 you have a no side effect way of aborting the headaches and secondly if it doesn't work I would be a little suspicious of the diagnosis.  My personal experience with Verapamil is similar to Hollywood Dan and about as close to delivering the baby as I ever want to get. personally him a little dubious about verapamil blocking.  the biggest problem you would run into is if busting does not work you don't know if the verapamil blocked. just didn't apply to your situation.  if you're not on the D3 regimen that's worth doing.  Remember besides busting with MM there are seeds, DALT and other products in the MM class.  just remember to be systematic and record what you have done that works and what you have done that doesn't work so when things get tough you have something to refer to and are not reinventing the wheel.

 

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Hi Trackle. I too have low BP and am limited on how much Verap. I can take. First, the short acting not extended release is better for us. Don't know why.

With my 240mg, I would take one in the morning, one at bedtime, and the last when I got up during the night. It worked best that way for me. Almost all of my hits are at night. Also, with just the one in the am I did not drag through the day. Taking two during the day stole my energy!! My resting BP was 80/60 at night, so adding more was not even considered on my end.

I definitely recommend the D3 Regimen!!! At the least, it slows the ramp up and lowers the intensity. For some, it can stop the CH entirely all by its lonesome.

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hello trackle,just to let you know my dose of 480 mil twice daily" 960 daily" does not effect mm treatment, for me that is"!

had a mm dose last night and my head is clear as a bell today!:),i will repeat in five days!

hope all goes well for you ,you are chatting to the right folks ! have faith in this site and you will be alright.!

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Thank you all so much for your answers. I do use oxygen and have a tank in my bedroom. Like Spiny - almost all of my attacks happen at night as well. Right now I take 1 in the morning, 1 in the afternoon, and 1 right before bed; but had considered changing it to one in the morning, one before bed, and one in the middle of the night. Like previously stated - it does not stop them, but does make them more sparse and less severe. The only reason that I even started the meds was because I have been having CH for 8 years and decided that I needed a proper diagnosis for my medical records and to get oxygen. After this cycle ends it will be back to the mm treatments but with the added ability of oxygen. I have been waiting to do the treatment because my neurologist ordered an MRI and then wanted to try actual medicine lol. I told my regular doctor that I use the treatments - but I didn't tell the neurologist so I'm not exactly sure how to tell her that I'm just going to stop the headaches myself. I figured I'd give conventional medicine a try, but once I can find some alternative treatment I am ready to throw in the towel and abort this cycle. My BF (who is incredibly supportive) has offered to start farming my treatment for me - but as you probably know that takes a long time so it's a great solution for next cycle but I would rather not wait until then to end this one lol. The Verapamil was worth trying - and has improved my quality of life by diminishing the severity of the attacks I have - but I still don't get to sleep, and not sleeping has lead to depression and other psychological problems (like desperation). I really appreciate the responses - I wanted to be sure that I was giving the Verapamil a fair chance before judging whether it was worth continuing. 

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Trackle,

there seems to be an element missing from the Verapamil therapy. My neurologist also perscribes me a cycle of Prednisone WITH the verapamil for at least a 2 week cycle to reduce inflammation of the nerve pathways, and it was the 'fix'! We have been able to put the CH to bed for extended periods of time (up to 2 years) with this treatment. Good luck! 

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This was my first attempt at using Verapamil. I was prescribed 240 Mg (80Mg) three times daily. Since I was able to sort of predict when my pattern of attacks was going to occur, my neurologist was willing to prescribe Prednisone if the Verapamil failed. The idea was to find an alternative to Prednisone. I'm 56. I have a 40 day cluster that occurs every two years. I need 60 Mgs of Prednisone to chase the headaches. He prescribes me 5 Mgs to to reduce the dose during the event to find the lowest dose that will work during the cluster period. This years event began with less severity. The headaches were not as fierce at the onset. So much so I wasn't positive the cluster was beginning.When I got a bad one I knew it was time to start the Verapamil. It was supposed to work after three days. For me the Verapamil may have dulled the pain some but on the fifth day of taking it, I got the most severe attack of the cluster. For whatever reason, the Vearpamil caused frequent urination. I discontinued it's use and went for what I know that works. Prednisone. I'm already about 15 days in so I won't need the Pred. for too long. I plan on using it for about 21 more days and my pattern should subside. I just joined this sight and I am interested in the D3 regimine which I will look into. Yes, Prednisone is a heavey side effect drug. I have a demanding job so I can't carry around oxygen. Luckily, I'l be able to retire shortly after my 2019 episode which will likely occur in late February. Yes, I would like to retire the Prednisone, but for me right now it works. 

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That isn't nearly enough verapamil for most people when they are in cycle.  Often it goes as high as 960/day, or even higher.  But you have to work up to that while monitoring the side effects.  I don't think it typically starts working after just three days, but could be wrong about that.

What about Imitrex as an alternative to all that prednisone?  It's kind of "pick your poison," but I'd hate to see you needing hip or shoulder replacements in your retirement.  Using the splitting-doses method with Imitrex, you can get quick aborts with a lot less sumatriptan. This is really just a question.

Have you tried energy shots?  You have oxygen for attacks outside of work?

The D3 regimen is described in the ClusterBuster Files section of this board.  It generally doesn't kick in very quickly, since most people have to significantly elevate their D levels from where they are starting. But for some people it does work relatively fast, at least to reduce severity of attacks.  Your best chance of relatively quick success is to do the loading that Batch recommends.

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