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Sylvan
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First Night On Verapamil
« on: Nov 30th, 2004, 10:38am »
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I took my first dose of verapamil last night. 40mg
 
I really didn't feel much different - as i expected. I would assume that a drug like this has a cumulative effect and wouldn't really produce much of an effect after only  1 dose.  
 
When i laid down to sleep - i could feel my heart beating - which i generally can't unless my BP is very high (it was 140/100 - so fairly standard for me of late)
 
I actually slept through the night for the first time in almost a month!  
 
Woke this morning a little groggy - but PF. Took my 2nd dose. I started getting a shadow of a headache shortly before taking it - which has persisted all morning so far.  
 
Two questions.  
 
1. Could the verapamil be helping so soon? Especially on such a low dose. I see so many people on much higher doses.  
 
2. Can the verapamil end up helping with the nocturnal HA's but allow daytime ones to start?  
 
Sorry if i'm being a pest - but this is still very new to me and very frightening. I'm probably making myself crazier by reading everything i can get my hands on and attempting to take control of this beast.
 
Sylvan
« Last Edit: Dec 4th, 2004, 8:16pm by Sylvan » IP Logged
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Re: First Night On Verapamil
« Reply #1 on: Nov 30th, 2004, 10:46am »
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(1) No. It takes awhile for the Verapamil to start working. 40mg is a really low dose (I take 180mg twice a day)
 
(2) Possibly.
 
Very few people really 'control' the beast. It's probably best to learn to 'cope with' the beast while seeking a preventative (and abortive) med that helps.
 
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Re: First Night On Verapamil
« Reply #2 on: Dec 3rd, 2004, 2:09am »
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 When I found this site, I had been through 14 months of tests and non-working meds.  Copied lots of info off this site, saw the doctor and demanded script for Verapamil and 02.  He started me low (40 or 80mg - don't remember) but (as advised on this board) I didn't have my first PF day until I hit 240mg.  Got as high as 360mg, then they quit (for whatever reason) and I dropped to a maintenance dose of 120mg . . . stopped that six months ago prior to a three month session of chemo-therapy (all good reports at the moment) as my blood pressure was uncomfortably low.  Now, I'm three months into cycle and am controlling with 02 and melatonin, but  intend to get back on the Verap as soon as I can scope out possible side effects with all the other meds I'm currently on.
   Side effects of Verapamill - - - constipation . . . the more you take, the more you need to alter your diet - - - lot's of tips here for that problem too.  The Verapamil "buzz" which can be a little disconserting driving or "operating heavy machinery" until you get used to it.  I remember trying to give myself at least an hour before driving, especially when I upped the dosage.
 
  Welcome,
 
 Richard
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Re: First Night On Verapamil
« Reply #3 on: Dec 3rd, 2004, 10:06am »
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I'm on 360mgs a day and it was a few weeks before I noticed any change. I'm also on lithium and Neuontin as prevents. I doubt it could have a therapeutic effect so soon, but who cares! You had a PF moment...enjoy it! I'm not sure about the diff between the day and night HAs. I usually only get daytime ones.
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Re: First Night On Verapamil
« Reply #4 on: Dec 3rd, 2004, 10:47am »
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So far i haven't had any major daytime ones - only 1:30 am (and 1 at 3:30 am)
 
Daytime seems to be shadows with occassional spikes - especially while driving. But no headbangers - just dull constant pain over my left eye.  
 
My BP is coming down slightly though. 6 days til neuro.  
 
Thanks for all of the support and advice.  
 
Sylvan
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Re: First Night On Verapamil
« Reply #5 on: Dec 4th, 2004, 6:31pm »
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Verapamil is my choice of prevenative.  I start with 120mg/day when the monster first re-appears.  During the summer months, I have gone as far as 600mg./day.  Even with that high of a dose, I get hit from time to time.  When I have not had a hit for awhile, I begin to reduce.  Eventually, I become verapamil free for a time, only to begin again when the monster returns.  I have learned over time to get a perscription for 240mg. pills.  I can break them in half and save alot of money over time.  I have had the best luck with the time release verapamil.  Oxygen is also one of my favorites.  I use welders oxygen.  It cost alot less than the medical oxygen, and its the same gass.   It comes out of the same tanker truck.  The bottles are a little heavier and uglier than the medical stuff, but it seems to work pretty well for me.    Oh yea.  When I begin taking the verapamil, it takes 1-2 weeks before I notice any change.  It is advised to me to be a taper on--taper off type med.      Good luck to ya.   Happy Holidays
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Re: First Night On Verapamil
« Reply #6 on: Dec 4th, 2004, 8:20pm »
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Thanks for the input and advice.  
 
After 1 week on verapamil - i have only had 2 really bad hits. Not sure if it's due to my BP being slightly lower or what - i'm just happy that i more or less slept through a few nights.  
 
I will be asking the neuro about the O2 this week. I may try to find the welders O2 if they won't RX the medical.  
 
Does anyone know if O2 falls under "durable medical supplies" or not?  
 
Also - if i have to get the welders O2 - where do i get the mask w/out an rx?  
 
Sylvan
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Re: First Night On Verapamil
« Reply #7 on: Dec 5th, 2004, 5:01pm »
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Quote:
Does anyone know if O2 falls under "durable medical supplies" or not?  
 

 
Yes
 
Lee
 
added
 
You can buy all that stuff on the net, local suppliers are less than nice about it because your not renting there stuf.
« Last Edit: Dec 5th, 2004, 5:08pm by forgetful » IP Logged
Sylvan
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Re: First Night On Verapamil
« Reply #8 on: Dec 5th, 2004, 7:15pm »
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Thanks! That's a relief.  
 
I think i have access to a local supplier. My S/O uses a c-pap and i think the same company can supply o2 and the mask and all.
 
If not - i may be picking your brain for info on on-line ordering.  Smiley
 
We'll see if that's what the neuro recommends. 4 days to go.  
 
Sylvan
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Re: First Night On Verapamil
« Reply #9 on: Dec 9th, 2004, 3:43am »
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Started on Verapimil (240mg a day)6 weeks ago and pain got less during attacks(took 3 or 4 weeks to really work) to where now im almost free. control attacks now with occasional O2 and imagrin, but alot better.  Cool
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Re: First Night On Verapamil
« Reply #10 on: Dec 10th, 2004, 4:49pm »
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verapamil (calan SR) did not work for me the first ten years. nor did lithuim, sansert, depakote, corgard or several others. but now verapamil and or melatonin seems to be working. i was almost a everyday attack in my first bout. had three years of remission. started back in aug. w/a fury, but now only seem to be gettin' hit one day a week.
« Last Edit: Dec 12th, 2004, 3:03pm by survivor13 » IP Logged
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Re: First Night On Verapamil
« Reply #11 on: Dec 12th, 2004, 1:22pm »
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Hi Folks. I'm a newbie to Clusterland ( I much preferred Disneyland) and refuse to pay for this Tongue
 
Finding this site and seeing that i'm not alone or just being a major wuss has helped more than I can say.  
Thanks for being there Smiley
 
I was fortunate enought to find a doctor...actually it was his assistant that recognized my headachs as clusters . I have been on a 240 mg dose of Verapamil for 2 weeks now and have noticed a decrease in the intensity of the attacks.  There seems to be a slowed ride to the demons clutches to.  15 days..1st pf day in 2 months and slept 6 hours strait.  LIfe is good....I hope.
 
The assistant also prescribed Indocin ( indometacin for other newbs Smiley )  as a preventative but it didn't seem to help....step 2 was to take 1-25mg Indocin as an aborter.   The timing is super critical !!!!    I now carry a vial with my max daily dose of 3-25mg capsules and 16 oz of water.  As soon as I feel the %$#@ thing coming on ( usually a serious eye stab...I get little teasers all day) I take 25 mg with a minimum of 8 oz of water. If it looks like a head banger I can take a second, and if needed, a third ( not a god move as 3 is the max for a given day) at 5 minute intervals.   Again...timing !!!  If I wait untill I complete a simple one minute task the effectiveness is reduced.  Initially I thought it must be the water that was making the diffference because it takes 25plus minutes for an oral med to get into the bloodstream...not so!!  The indometacin somehow gets going very fast.  I have only been to 10 on the Kip scale using this if I wait to long and usually can keep the ch down to a bearable 3or 4ish after an initial few minute spike to 5 or 6 and totally abort it maybe 1 out of 10 times.  Lastly, after getting the Indocin down I go on 02 for 15 minutes.  Thinking of just trying the O2 alone as the attacks decrease in intensity. The O2 seems to help alot with a secondary headache that usually follow the first attack in a day and seems otherwise to just hang there
 
I'd be very interested to know if anyone has had similar luck or suggestions.  
 
Take care all
Bill
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