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(Message started by: Bandette74 on Dec 18th, 2004, 8:03pm)
Title: verapamil?
Post by Bandette74 on Dec 18th, 2004, 8:03pm
got a question for those of you who take this stuff--if you don't mind giving up some personal info.

what is the typical (your) dosage for CH prevention?

if it does prevent CH, and episodics only need to take it when they're episodic, how do you know when your episode is over if the med prevents the CH? do you still shadow, etc.? how would you know when your cycle is over if you're not getting the CH?

how effective has this stuff been for you? do you still get CH but not as often or not as painful?

thanks!  --Daphne
Title: Re: verapamil?
Post by Kevin_M on Dec 18th, 2004, 8:18pm

on 12/18/04 at 20:03:48, Bandette74 wrote:
what is the typical (your) dosage for CH prevention?
A GRADUAL tapering of increasing doses of verap, until you get results.  So far for me, 600mg to 720mg is holding just well enough, everyone is different.  Check with doc for details though.  


Quote:
do you still get CH but not as often or not as painful?
  ;)   so far, but episode is still developing.

*side effects can vary too.

*the meds and treatments board probably has LOTS written about it if you keep scrolling back.


Kevin M
Title: Re: verapamil?
Post by Bandette74 on Dec 18th, 2004, 8:22pm

on 12/18/04 at 20:18:43, Kevin_M wrote:
A GRADUAL tapering of increasing doses of verap, until you get results.  So far for me, 600mg to 720mg is holding just well enough, everyone is different.  Check with doc for details though.  

  ;)   so far, but episode is still developing.

*side effects can vary too.

Kevin M


most grateful, kind sir.  [smiley=thumb.gif]
Title: Re: verapamil?
Post by don on Dec 18th, 2004, 8:24pm
The verapamil will not completely stop all the attacks while in cycle. It will decrease the frequency of the attacks. You'll still have shadows.

How do you know when you are out of cycle. No attacks for 1 week is my standard. Then I taper off the verapamil.

480mg per day for me.
Title: Re: verapamil?
Post by Bandette74 on Dec 18th, 2004, 10:41pm

on 12/18/04 at 20:24:02, don wrote:
The verapamil will not completely stop all the attacks while in cycle. It will decrease the frequency of the attacks. You'll still have shadows.

How do you know when you are out of cycle. No attacks for 1 week is my standard. Then I taper off the verapamil.

480mg per day for me.


important info. i truly appreciate it  [smiley=winkkiss.gif]
Title: Re: verapamil?
Post by nani on Dec 18th, 2004, 11:54pm
I'm taking 360 mgs of verapamil, along with 150mgs lithium and 1200mgs Neurontin. I'm chronic, so I will likely stay on them. I have high BP, so long term verapamil use will probably be fine for me...may even keep me from my inevitable heart attack.  :-/
Title: Re: verapamil?
Post by Bandette74 on Dec 19th, 2004, 3:45am

on 12/18/04 at 23:54:12, nani wrote:
I'm taking 360 mgs of verapamil, along with 150mgs lithium and 1200mgs Neurontin. I'm chronic, so I will likely stay on them. I have high BP, so long term verapamil use will probably be fine for me...may even keep me from my inevitable heart attack.  :-/


danka! yep, seems like verapamil may help solve the problem some people have with elevated blood pressure due to imitrex injections and the like. i appreciate the head's up on the verapamil as a preventative. it doesn't seem to have many adverse side effects, so it might be a good option for me. thanks again   ;)
Title: Re: verapamil?
Post by Dave_B. on Dec 19th, 2004, 7:57am
I too am a newbee, just recently diagnosed with CH, long drawn out process, wich ended up with the nuerologist telling me what it was. He put me on Verapimil and lithium, and prednisone, kind of aggressive maybe, but after 6 weeks of hell without a break my wife and kids don't mind.  If it's going to work I think the results will be immediate, and the specialists are the ones you need to see, not general practitioners, they might be able to take over afterward,  for filling srcipts, but the main info would have to be given to them.  Good luck in finding the right treatment, everyone is different  ;;D
Title: Re: verapamil?
Post by karma on Dec 19th, 2004, 8:07am
With the verapamil you will need to find laxative. Adding magnesium will help. Magnesium with B suppliments will also help with the CH.
The verap will block the plumbing up faster than a bunch of landlubbers on a charter boat.
Title: Re: verapamil?
Post by Bandette74 on Dec 19th, 2004, 8:28am

on 12/19/04 at 08:07:40, karma wrote:
With the verapamil you will need to find laxative. Adding magnesium will help. Magnesium with B suppliments will also help with the CH.
The verap will block the plumbing up faster than a bunch of landlubbers on a charter boat.


;;D also very important info to know! much gratitude!!
Title: Re: verapamil?
Post by Biker on Dec 19th, 2004, 5:13pm
Originally put on 120mg verapamil a day.  Upped to 240.  Then upped again to 360, then again to 480.  I was told to lower back to 360 when I got dizzy when I stood up.  At 480, I could feel my heart beating when I went to bed.    As years went by, insurance ran out, ect ect,  I found I had to adjust my intake to suite my CH.  If I dont have any attacks, I like to lower my intake.  When I start getting hits, I increase.  Currently, I get a perscription of 240mg. pills.  I have learned to cut them in half to save bucks.  This allows me to increase and decrease fairly easy.  Whenever possible, I decrease to none.  Zero.  Usually in the winter months.  Im not telling anyone to go against their DR.s perscription, but I have found that I dont need verapamil all the time.  Side effects????  Too much makes me dizzy when I stand up quickly--also my bowels dont move so well-I take care of that with a massive intake of coffee.  High doses of verapamil interfears with my sex life too.  Lower blood pressure----I guess its a man thing.  Better than crawling on the floor with that intolorable pain in my head though.    All in all,  I think Im lucky.  Verapamil seems to keep me from having CH more often than without it.   I went from every single night (while sleeping) and often during the day, to just a few times a week--with increased intake, I got to just a couple times a month.   Its a balance act.  I would prefer to to take it at all, I adjust my intake to my CH.     I hope that helps with your question.  
Title: Re: verapamil?
Post by Bandette74 on Dec 19th, 2004, 7:32pm

on 12/19/04 at 17:13:23, Biker wrote:
Originally put on 120mg verapamil a day.  Upped to 240.  Then upped again to 360, then again to 480.  I was told to lower back to 360 when I got dizzy when I stood up.  At 480, I could feel my heart beating when I went to bed.    As years went by, insurance ran out, ect ect,  I found I had to adjust my intake to suite my CH.  If I dont have any attacks, I like to lower my intake.  When I start getting hits, I increase.  Currently, I get a perscription of 240mg. pills.  I have learned to cut them in half to save bucks.  This allows me to increase and decrease fairly easy.  Whenever possible, I decrease to none.  Zero.  Usually in the winter months.  Im not telling anyone to go against their DR.s perscription, but I have found that I dont need verapamil all the time.  Side effects????  Too much makes me dizzy when I stand up quickly--also my bowels dont move so well-I take care of that with a massive intake of coffee.  High doses of verapamil interfears with my sex life too.  Lower blood pressure----I guess its a man thing.  Better than crawling on the floor with that intolorable pain in my head though.    All in all,  I think Im lucky.  Verapamil seems to keep me from having CH more often than without it.   I went from every single night (while sleeping) and often during the day, to just a few times a week--with increased intake, I got to just a couple times a month.   Its a balance act.  I would prefer to to take it at all, I adjust my intake to my CH.     I hope that helps with your question.  


thank you so much!

i do not believe in following medical professionals blindly. i believe that patients not only have a right but a responsibility to be active participants when it comes to deciding treatments. afterall, it's my body, and i have to live with whatever i do to it. i agree, that's not the same as saying that i recommend that others or even myself go against medical instructions, but in the end, it is your body and your life you're dealing with.

i have my first neuro appt. soon, and i'm trying to walk in the door with as much knowedge behind me as i can get. i don't know what this guy knows about clusterheads or if he's ever treated one before, and i don't know how he feels about patients participating in determining treatment strategies, but frankly, i don't give a flying fuk.

a wonderful walk-in clinic doctor prescribed Relpax to me, and it has been marginally effective, but with it, i cannot take trex if i get a bad attack, so it's not my favorite option--just glad i had it as it helped somewhat as a preventative/abortive. however, for the past few days i've been out of scripts, and i have to wait for my appt. tomorrow morning with the neuro before i can get more help.

from all i've read, i'm going to request O2, trex injections and verapamil. this seems to be the best line-up out there, and with few side effects. however, i'll meet with the neuro, and we'll talk it through together. i have no other heath problems, so the fewer drugs the better. i am deeply concerned about non-depressed people taking anti-depressants and level-headed people taking mood stabalizers, etc. these are simply not options that i would ever consider. yet, again, that's not saying that i don't support others who choose to use these medications and have found them to be effective. i say, do whatever helps you most--again, it's your body.

pain free wishes to all!!  [smiley=lick.gif]
Title: Re: verapamil?
Post by Bandette74 on Dec 19th, 2004, 7:35pm

on 12/19/04 at 07:57:24, Dave_B. wrote:
I too am a newbee, just recently diagnosed with CH, long drawn out process, wich ended up with the nuerologist telling me what it was. He put me on Verapimil and lithium, and prednisone, kind of aggressive maybe, but after 6 weeks of hell without a break my wife and kids don't mind.  If it's going to work I think the results will be immediate, and the specialists are the ones you need to see, not general practitioners, they might be able to take over afterward,  for filling srcipts, but the main info would have to be given to them.  Good luck in finding the right treatment, everyone is different  ;;D


thanks, and so glad that's working for you! hope you continue to have the beast down where it belongs and not affecting your life. Cheers!  --Daphne  ;;D
Title: Re: verapamil?
Post by Kirk on Dec 19th, 2004, 7:49pm

on 12/19/04 at 08:07:40, karma wrote:
The verap will block the plumbing up faster than a bunch of landlubbers on a charter boat.


We call em pukers[smiley=hurl.gif]
http://earth.esa.int/applications/data_util/hrisk/ssf/trawler.jpg
Title: Re: verapamil?
Post by Bandette74 on Dec 20th, 2004, 3:25pm
went to neuro today--very happy with him and the appt overall. all my worrying was not necessary.

scripts for trex pills and verapamil with a notice that if they don't seem to work he's happy to prescribe oxygen and trex injections. however since i seemed to have good luck with the Relpax pills, he thought the trex would work equally as well, and you get more pills per pack with trex than Relpax. he thought it would be best for me to avoid traveling to work and college with an oxygen tank if i didn't need to, and i can certainly see his point. i just take the pills when i get strong shadows, and they tend to work as a combo preventative/abortive.

just glad to have something prescribed finally, and i think it'll be effective enough without posing big side effects.

thanks again to you all for the limitless info.  ;;D

pain free wishes to everyone!!!!
Title: Re: verapamil?
Post by cschick on Dec 20th, 2004, 4:47pm
Good luck with the meds.  I am on verap as preventative - recently ended cycle but staying on as I get migraines as well and verap is used as a migraine prevent as well.  I do notice I get dizzy but my BP has been pretty low with it so not surprising to get dizzy.  Watch your BP close while on this - my BP wasn't high to begin with (only while getting hit did it elevate to scary levels!) and this is bringing it down pretty low - I am down to 240 mg daily.
Title: Re: verapamil?
Post by Bandette74 on Dec 20th, 2004, 5:18pm

on 12/20/04 at 16:47:02, cschick wrote:
Good luck with the meds.  I am on verap as preventative - recently ended cycle but staying on as I get migraines as well and verap is used as a migraine prevent as well.  I do notice I get dizzy but my BP has been pretty low with it so not surprising to get dizzy.  Watch your BP close while on this - my BP wasn't high to begin with (only while getting hit did it elevate to scary levels!) and this is bringing it down pretty low - I am down to 240 mg daily.


thanks, i will--good advice. i told my neuro about the info i learned from this place. he said, "really? did they tell you how much verap to start out on? they'd make my job really easy."  ;;D he started me at 40 mg BID. he was very pleased with all the great info i got from you all, and he agreed with all of it. it's so great to know that this place is here for people to educate themselves on this illness as we share information with one another, and the support is really nice too.
Title: Re: verapamil?
Post by Bandette74 on Dec 20th, 2004, 5:26pm

on 12/19/04 at 07:57:24, Dave_B. wrote:
I too am a newbee, just recently diagnosed with CH, long drawn out process, wich ended up with the nuerologist telling me what it was. He put me on Verapimil and lithium, and prednisone, kind of aggressive maybe, but after 6 weeks of hell without a break my wife and kids don't mind.  If it's going to work I think the results will be immediate, and the specialists are the ones you need to see, not general practitioners, they might be able to take over afterward,  for filling srcipts, but the main info would have to be given to them.  Good luck in finding the right treatment, everyone is different  ;;D


the verapamil should not have immediate results, by the way. according to all i've read and been told by my neuro, it takes some time, like a week or so at least, for it to work. i don't know about the other things like lithium and prednisone, as i would not consider those options for myself unless the old imitrex/relpax and verapamil combo didn't work well for me.


i do hope this is working for you, though, and your family is able to have you back in good health

;)
Title: Re: verapamil?
Post by TomM on Dec 20th, 2004, 5:44pm

on 12/19/04 at 08:07:40, karma wrote:
With the verapamil you will need to find laxative. Adding magnesium will help. Magnesium with B suppliments will also help with the CH.
The verap will block the plumbing up faster than a bunch of landlubbers on a charter boat.

That is what happened to me. But 2 bottles of this: http://www.valu-rite.com/images/magnesium-citrate.jpg cleared me up quicker than you can say...uhm..."Look Out!"
Title: Re: verapamil?
Post by Bandette74 on Dec 20th, 2004, 5:47pm

on 12/20/04 at 17:44:46, TomM wrote:
That is what happened to me. But 2 bottles of this: http://www.valu-rite.com/images/magnesium-citrate.jpg cleared me up quicker than you can say...uhm..."Look Out!"


hahahahhahahahahahahaaa! much obliged, sir  :P
Title: Re: verapamil?
Post by Sylvan on Dec 20th, 2004, 5:57pm
One tablet of this: http://www.freshdirect.com/media/images/product/hba/hba_correctol_tab_c.jpg every 3 days or so seems to be doing the trick for me  :)

And 40 mg 2x a day is a very low starting dose. My first doc started me on 40 3x a day - upped to 80 3x a day about a week later - now i'm up to 240 2x a day with lithium.

My 3rd doc said that 40 mg of verap is about as effective as sugar pills.


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