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nohandgunsallowed
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propranolol to verapamil change -what say you?
« on: Oct 20th, 2006, 11:42pm »
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greetings.  couldn't be newbier, i know...not new to the CH evil though.  for 8 years the clusters have      been well
controlled with 120mg. propranolol daily. with triptans and cafergot for break-thru...  until 2 wks. ago.
then, you know the drill, every nite, every nite.  started on prednisone 60mg. daily which seems to be helping.  Neurologist also had me switch to verapamil 120mg for first 4 days, then 240mg thereafter.  however, neuro did not seem at all worried about my stopping the propranolol that day!  when i asked about a taper, she suggested 3 days!  should i be as panicked as i am?  how long before the verapamil picks up the slack, i wonder?  frankly, i am taking both out of fear (as well as taking my pulse, i know...)
 
ANY advice, experience, insight for this fellow sufferer would be Greatly appreciated.  Thanks.
« Last Edit: Oct 20th, 2006, 11:42pm by nohandgunsallowed » IP Logged
nani
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Re: propranolol to verapamil change -what say you?
« Reply #1 on: Oct 20th, 2006, 11:44pm »
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Hi and welcome. The pred will help while the verapamil kicks in. Propanolol doesn't really work well for CH, it's better for migraines. You are on a short term pred taper, right? Too much can hurt you.
pain free wishes, nani
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nohandgunsallowed
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Re: propranolol to verapamil change -what say you?
« Reply #2 on: Oct 20th, 2006, 11:47pm »
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thanks for responding...i will allow for the chance that the propranolol Didn't help the clusters.  if that's the case, then i have been blessed with infrequent bouts without any preventative...still wonder how long verapamil might take to reach a therapeutic level though.
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Re: propranolol to verapamil change -what say you?
« Reply #3 on: Oct 20th, 2006, 11:58pm »
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Usually Verapamil takes about 2 days to start lowering blood pressure but no one knows what dose you will need for it to work for CH.  
 
The mechanism for Verap against CH is more via the Ca+ channel blocks rather than just blood pressure lowering, thats why it is usually used in much higher doses for CH than when used normally just for hypertension.
 
Its fine to take pred taper while building up the Verap.  
 
You may need to use Triptans OR Cafergot more in the mean time for the hits, but dont mix both though.
 
Take care and PFDAN
 
 
Annette
« Last Edit: Oct 23rd, 2006, 3:51pm by BB » IP Logged
nohandgunsallowed
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Re: propranolol to verapamil change -what say you?
« Reply #4 on: Oct 21st, 2006, 12:35am »
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thanks!  i was afraid it'd be weeks/months for a level to build up.  it is SR, which is sustained release?  how high a dose of verapamil is the max, 480mg?  do folks increase dosages themselves if episodes aren't being stopped with lower doses -- and does a higher dose work in that case? any experince with dose-ranges?  many  thanks
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Re: propranolol to verapamil change -what say you?
« Reply #5 on: Oct 21st, 2006, 1:14am »
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Maximum dose for Verapamil is 1000 mg per day.  
 
The slow release version SR may not work as well as the immediate release.
 
You cant increase the dose yourself, as it lowers blood pressure and can cause abnormal heart beats you need to see your dr for check up and ECG with each dose increase. Usually the dose gets increased every 3 to 5 days depends on the symptoms and side effects if any.
 
If a lower dose helps but not that much then its worthwhile to increase the dose to see.
 
The problem is if you develop hypotension, ( BP too low ) or funny heartbeats then you wont be able to increase the dose any higher, then you may need to add something else like lithium.
 
Good luck with it all and let us know how you go.
 
Cheers
 
PFDAN to you.
 
Annette
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Re: propranolol to verapamil change -what say you?
« Reply #6 on: Oct 21st, 2006, 1:17am »
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Hi there and welcome.
What is it that you were taking the propranolol for?  Do you have high blood pressure or do you have another problem you take that for?
I also take propranolol for a different condition.  I have never heard of propranolol helping clusters.  My docs have said if you want to take them together, take small doses, but it is still not the best idea.  Its good to taper off the propranolol over a few days and then taper into the verapimil.  
Read up, there is lots of info here.  
Again, welcome.
B$
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Re: propranolol to verapamil change -what say you?
« Reply #7 on: Oct 21st, 2006, 1:35am »
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Hi No...,
 
Was prescribed propanolol years ago for CH. Took it for a long time, hoping...  Didn't work for me with unpleasant side effects like nightmares.
 
Currently taking verapamil 480mg/day and considering higher since it is losing effectiveness after years of help (perhaps a tolerance, don't know). As others have said here and in other threads, SR is NOT as effective.
 
Took about 7-14 days in my case to become effective, AFTER a medrol (similar to prednisone) taper.
 
Get thee some O2, read about it here. Is BEST and least side effective treatment. Also have had success with Zomig nasal spray. Others here swear by Imitrex injections. read, read, read...
 
Sorry you are here but welcome, you will find a family, info, and support like NOWHERE else.
 
Regards
 
Jon
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nohandgunsallowed
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Re: propranolol to verapamil change -what say you?
« Reply #8 on: Oct 21st, 2006, 1:36am »
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i don't know about propranolol not helping clusters generally.  i only know about my own experience with it.  after suffering  regular 10/10 headaches that meet all CH characteristics plus photophobia, i was diagnosed with 'migraines.'  propran was prescribed as a prophylaxis and within a couple months, my 'migraines,' that came 2,3,4 or more nights in a row at 2am, with me waking up screaming...stopped.  since that time, every few months i pop a triptan at the first sign of a headache and rarely wake
up with one.  
 
after my recent cluster of 16 days in a row, ended 3 days ago, i'm still partly shadowy all day and am worried.  worried what'll happen when the prednisone is gone. and also worried about stopping what (i believed) had stopped so much pain for so long and starting the verapamil instead.  
 
btw, what drove me to the docs in the first place was the fact that my triptan, that had previously stopped the attack -- now only worked for about 30 minutes and then the headache blasted back through.  so i'd take another.  and maybe a half hour later, another.  mix in a couple cafergot because i would just as soon die at that moment, nowhere near my normal mental state. i told three different docs how much i was taking and they just sort of winked and nodded!
 
thanks for your response. i have a lot of questions to answer and it is a godsend that i found this board. thanks!
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Re: propranolol to verapamil change -what say you?
« Reply #9 on: Oct 21st, 2006, 1:40am »
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much and many thanks for the advice.  am presently armed with imitrex inject and sprays.  tried O2 for the first time in an ER but it didn't work, or didn't work completely.  do you expect O2 to completely stop the attack or just knock it down a couple notches?  i am hoping i don't need the ER soon but if i do, i'll request O2 on the way in!
 
peace and thanks
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Re: propranolol to verapamil change -what say you?
« Reply #10 on: Oct 21st, 2006, 1:46am »
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For me, O2 knocks it out completely.  Sometimes it can take a while for it to work, but even when it isnt working perfectly it still knocks the CH down a couple notches.  
Luckily for me, when I take O2, I can feel relief in minutes, but sometimes it does take up to 20 minutes to knock it out completely.  
 
BTW, if you dont already know, it needs to be high flow O2, like 12 to 15 litres per minute, and it must be in a non-rebreather bag.  Dont use the nose canules.
 
PF wishes
BMonee
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Re: propranolol to verapamil change -what say you?
« Reply #11 on: Oct 23rd, 2006, 6:22am »
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hi and welcome to the madhouse.
 
i took bloody propanalol for 7 stupid years without it doing ANYTHING.
but i was scared to stop taking it incase it really was doing something and they would get worse if i stopped.
 
when i finally got to see a neurologist (after nearly decking my doctor coz i was at witts end) he put me on verap and told me to stop taking the propanalol. which i did straight away, binned the lot.
 
iv been pretty much pain free since then my friend.
480mg a day for me - still get the odd breakthrough which i just kill with a shot of imitrex !!  Grin
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Re: propranolol to verapamil change -what say you?
« Reply #12 on: Oct 23rd, 2006, 6:51am »
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Quote:
Usually Verapamil takes about 2 days to work but no one knows what dose you will need for it to work.

 
More like 7-10 days to reach theraputic levels.
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Re: propranolol to verapamil change -what say you?
« Reply #13 on: Oct 23rd, 2006, 9:32am »
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on Oct 21st, 2006, 1:40am, nohandgunsallowed wrote:
much and many thanks for the advice.  am presently armed with imitrex inject and sprays.  tried O2 for the first time in an ER but it didn't work, or didn't work completely.  do you expect O2 to completely stop the attack or just knock it down a couple notches?  i am hoping i don't need the ER soon but if i do, i'll request O2 on the way in!
 
peace and thanks

 
I've read you need to use the O2 as early as possible, and not wait too long.  That's probably why it didn't work very well at the ER.
 
Charlotte
« Last Edit: Oct 23rd, 2006, 9:36am by Charlotte » IP Logged
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Re: propranolol to verapamil change -what say you?
« Reply #14 on: Oct 23rd, 2006, 10:02am »
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on Oct 21st, 2006, 1:40am, nohandgunsallowed wrote:
much and many thanks for the advice.  am presently armed with imitrex inject and sprays.  tried O2 for the first time in an ER but it didn't work, or didn't work completely.  do you expect O2 to completely stop the attack or just knock it down a couple notches?  i am hoping i don't need the ER soon but if i do, i'll request O2 on the way in!
 
peace and thanks

 
 
For me, 80% of the time, O2 knocks it out completely and typically (again almost 80% of the time) it does so in less than 10 minutes.
 
The quality non-rebreather mask and 10-15 lpm is critical to the likelihood of success however. The great thing is that ER's are becoming knowledgable about O2 as a treatment for Cluster, the rest of the education is to get them to meet the administering directions. (Was even in Men's Health magazine this month as one of the preferred treatments.)
 
Scott
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