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        New Message Board Archives >> Jul-Sep 2003 >> Verapamil Users
        
(Message started by: cathy on Jun 30^th, 2003, 12:54pm)

Title: Verapamil Users
Post by cathy on Jun 30^th, 2003, 12:54pm

Please answer the following questions...

1/ What dosage of Verapamil are you on.

2/ How long have you been on Verapamil

3/ Episodic or Chronic

4/ Have you noticed Swollen gums/Bleeding Gums

5/ In your opinion have your clusters changed

I plan to print the post off and send the results to Dr Goadsby if thats is okay.

Cathy :)

Title: Re: Verapamil Users
Post by fubar on Jun 30^th, 2003, 12:58pm

1) twice daily 1.5x240mg
2) 10 months
3) Chronic
4) Not at all
5) Yes. At first, verapamil alone seemed to help a bit, then not at all. Now, verapamil plus lithium is what keeps me alive.

-Fu

Title: Re: Verapamil Users
Post by Marc on Jun 30^th, 2003, 1:36pm

1) 180mg (SR) x 3
2) 4 Years
3) Chronic
4) No
5) Yes - Verapamil worked fantastically for the first 2+ years. Now it's gradually becoming less effective with time.

Title: Re: Verapamil Users
Post by Kenzie60 on Jun 30^th, 2003, 1:40pm

1. 160mg x 3 times a day
2. Since May 2003
3. Episodic
4. No
5. Yes, but I think I my cycle was ending anyway.

Roseanne

Title: Re: Verapamil Users
Post by GarysGirl on Jun 30^th, 2003, 2:14pm

Hi Everyone ; I am a supporter , but will answer how Verapamil works for my Clusterhead.

1. 80mg 2-3 Xday
2. 1 1/2 years
3. episodic
4. no
5. the headaches have not changed , but in Canada they stopped manufacturing N-Verapamil in Feb 2003 and brought out Gen-verapamil. The headaches really broke through with the change in meds. It has been brought back under control with the addition of 25 mg Elavil at bedtime.
:) Doris

Title: Re: Verapamil Users
Post by Gramma-Nancy on Jun 30^th, 2003, 2:20pm

1) 240 mg
2) During cycles since 1997
3) Episodic
4) No
5) Yes. Am able to skip nights without a HA while on it, and the intensity of the ones I get are less.

Nancy

Title: Re: Verapamil Users
Post by Bob P on Jun 30^th, 2003, 2:42pm

Courtesy of the OUCH survey page:

http://www.clusterheadaches.org/survey/survey.htm

Title: Re: Verapamil Users
Post by ZAIRA on Jun 30^th, 2003, 2:55pm

Ciao Milady...

1- 960 mg (240mg x 4 times a day)

2- 8 years

3- Episodic ???

4- Never

5- I love Verapamil and it loves me... I use it with Lithium

Zaira ;)

Title: Re: Verapamil Users
Post by Live4Fun on Jun 30^th, 2003, 2:57pm

1. 240mg/day now (usually 120/day)
2. 2 years
3. Episodic
4. Nope
5. A little, with the upped dosage and the combination of Prednisone during a cycle it has seemed to help. Could have just been the pred though???

Bryan

Title: Re: Verapamil Users
Post by jonny on Jun 30^th, 2003, 3:15pm

480

13 years

Chronic

Pre or post store bought teef?

You betcha (For the better)

............................JTB ;D

Title: Re: Verapamil Users
Post by cbolony on Jun 30^th, 2003, 3:47pm

240 mgs 2x aday
7 months
Episodic
No
when i was on a low dose no change higher dose combo with depakote low kips Cycles started earlyJan
ended march 6 two weeks PF then low kips still in them 5-8 aday maybe i going chronic will talk to neuro in a couple of weeks

Title: Re: Verapamil Users
Post by Jewel on Jun 30^th, 2003, 4:18pm

1. Unsure of dosage, but I know it's very small.

2. 8 years

3. Episodic

4. No

5. Haven't noticed any changes.

Title: Re: Verapamil Users
Post by stuey on Jun 30^th, 2003, 5:00pm

Went up to 720 but now am going back down to 240 (I take for blood pressure).

Have been on for 3 years.

I'm supposedly episodic but this is sure one long long cycle.

No swollen gums or anything

Can't say I saw any real change even when I went up to 720. I wanted to think I did but not really.

Title: Re: Verapamil Users
Post by don on Jun 30^th, 2003, 5:23pm

240 mg 2X day (480 per day)

Last three cycles

Episodic

No side effects

yes, minimizes frequency of attacks

Title: Vera rap my mule
Post by rumplestiltskin on Jun 30^th, 2003, 6:42pm

1. 480 in morning, 240 at night
2. 2 years
3. Epy guy
4. Not to the best of yer knowledge
5. Hell yea! They almost completely disappeared! The few that break thru barely touch the kip scale before I O2 and/or Midrin and/or excercise and/or Zomig them back to hell. I feel like I died and went to Heaven.

wage Peace
den

Title: Re: Verapamil Users
Post by eyes_afire on Jun 30^th, 2003, 7:21pm

1. 360 mg

2. This cycle: 3 months and counting. Last cycle 10 months before stopping it for an alternative treatment plan.

3. Episodic, I think (but shadowing since September 2001)

4. No.

5. Verapamil is very effective for me. Greatly decreases the frequency and intensity of CH. But, last cycle was the first time I tried it and it was my longest cycle (13 months instead of 6 months).

--- Steve, one of many...

Title: Re: Verapamil Users
Post by klp on Jun 30^th, 2003, 10:08pm

1. 240mg twice daily
2. just started 2 days ago
3. episodic
4. nope
5. yes, yes, yes. prednisone 80 probably helps but since i started 2 days ago, ive had NO attacks!!!!!!!!!

Title: Re: Verapamil Users
Post by iJun G4 on Jul 1^st, 2003, 6:00am

1. 180mg x 3-4 times/day

2. 4 or 5 years, only during cycle (8-10 wks. each)

3. Episodic

4. No swollen or bleeding gums at all.

5. Verapamil has been very effective in reducing frequency and intensity of attacks, but I am always having to increase dosage for the effectiveness to continue. I used to feel a huge impact with just 180mg/day; now even 720mg might not be enough. I am going to request my neuro to start me on Lithium to see if if helps.

Title: Re: Verapamil Users
Post by maggie_may on Jul 1^st, 2003, 7:38am

1. 240mg 1x/day

2. only during cycle since November 2002

3. episodic

4. nope

5. I love it. I have less attacks when I'm taking it.

Title: Re: Verapamil Users
Post by Ann on Jul 1^st, 2003, 7:53am

#1- 2 x 120 mgs Regular.... (tried SR..didn't work)

#2- coming on 3 years

#3- episodic

#4- yes

#5- yes in combination with lithium.

Good luck
hugs
Ann

Title: Re: Verapamil Users
Post by backagain on Jul 1^st, 2003, 7:54am

1. 180mg SR 1xday
2. 2 weeks, I restart at the beginning of each cycle
3. episodic
4. no
5. yes, less intense, but I'm not sure if this is due to the varapamil or the prednisone.

Title: Re: Verapamil Users
Post by sanjay on Jul 1^st, 2003, 11:32am

1) 480 mgs/day

2)early 2001

3)Chronic

4) YES ... when I was on 720 mgs. for a few months, I noticed Swollen / Bleeding gums. I was told by my Doc that this was called Gingival Hyperplasia /Gingavitis, and that high doses of Verpamil sometimes (on rare occassions) causes this. If unarrested, it leads to the teeth falling out. I was told to stop the Verap. However, I reduced it very slowly, & at 480 mgs., the swelling/bleeding stopped.(My teeth are still all there).

5) YES ... while on 720 mg's, my Ch's were down to about 1/day, all low intensity. On reducing to 480, they went up in intensity / frequency (BUT still much much better than with no Verap).

Today, on 480 mgs/day, and the occasional Shrooms (thanks to the Pink One), I'm relatively PF

PF times to all

Sanjay

Title: Re: Verapamil Users
Post by TerryS on Jul 1^st, 2003, 12:22pm

1. I take 2 240mg at bed time.

2. March of 2003.

3. Episodic.

4. No.

5. No.

TerryS

Title: Re: Verapamil Users
Post by Major_Headcase on Jul 1^st, 2003, 9:23pm

1) Dosage: 720mg/day during cycle; 1 X 240mg/day for blood pressure control

2) Verapamil during cycles - 2 1/2 yrs; FT for blood pressure control - just the last 2-3 months

3) Episodic

4) No gum problems

5) YES! All around better, fewer CHs and generally less severe, though I have had a few that were just 7-10 minute "blasts from hell" kip 8-9, compared to my usual 50-60 minute kip 3-7 on Verapamil (or until the Imitrex kicks in). This last cycle my doc added Prednisone and that helped as well.

Title: Re: Verapamil Users
Post by juvy on Jul 2^nd, 2003, 3:34am

questions about Verapamil...didn't anyone else who has tried this drug have the side effect of being turned into a zombie?

When i was on it, i literally coudn't walk and breath at the same time as it took all my concentration to just breathe for a couple hours after i took the med. I literally layed on my couch and drooled...My brother and fiance being the loving people they are...watched and picked on me. I'm still planning my revenge for that.

~juvy

Title: Re: Verapamil Users
Post by Jackie on Jul 3^rd, 2003, 12:19pm

Speaking for Blake..... ;D

1. 960 mg. a day (higher dose than usual because he is
tapering off the prednisone and it's a dangerous time
of year for him.
2. 11 years
3. Chronic
4. No bleeding gums...but the 960 mg has caused
swollen legs and feet...cutting back the dose now
to see if we can get rid of that.
5. Can't answer ....they're still there.
Maybe they would be worse without the verapamil.

Title: Re: Verapamil Users
Post by Danielle on Jul 3^rd, 2003, 6:17pm

1) 960-1200 mg (480-600 twice per day)

2) For the past 3 years (first year no medication)

3) Chronic

4) No swollen/bleeding gums

5) For the first year or so....but the effect was not lasting. Things seem to work for a time (reduce frequency of headaches and/or severity) but they are always there to some degree and eventually my CH's "break through" my medication in full force and I have to adjust. I am still trying to find just the right coctail..so far, no good.... :'(

Title: Re: Verapamil Users
Post by jonny on Jul 3^rd, 2003, 6:38pm

on 07/03/03 at 18:17:48, Danielle wrote:

I am still trying to find just the right coctail..so far, no good.... :'(

Have you tried Lithium with your Verapamil?

For this 28 year chronic it has been a god send for the last 13 years.

Just a thought.

..................................jonny

Title: Re: Verapamil Users
Post by stevegeebe on Jul 3^rd, 2003, 8:47pm

1. 480mg per day
2. April 03
3. Episodic
4. No
5. Not sure...only difference is that I'm getting hit less at night. I think it's the Frova (5mg per day) that's letting me sleep.

Steve G

Title: Re: Verapamil Users
Post by Marijke on Jul 4^th, 2003, 2:20pm

1. 360-480 mg a day
2. since dec 2001 (when in cycle)
3. epi
4. hardly, just the no-shit stuff
5. yes, though a bit less effective last cycle. Usually turns cycle into just shadows, last cycles a couple of mild (kip5/6 or so) came through.......hope it keeps working this well

Title: Re: Verapamil Users
Post by Tim_w on Jul 4^th, 2003, 2:46pm

720
5years
Chronic
no
Yes - but always sleepy

Tim_w

Title: Re: Verapamil Users
Post by Danielle on Jul 4^th, 2003, 4:28pm

Have you tried Lithium with your Verapamil?

Yes, tried it just 6 weeks ago...it aggravated my clusters along with giving me the shakes like crazy. I was so disappointed, I was really hoping it would work. One question I did have though, I could only stand it for about 4 days...is Lithium something that needs to 'build up"? I was adding it to Verapamil and Topomax and would hate to think that besides the shakes, I gave up too soon. But God, you know when your having like 8 clusters a day you'll do anything to make it better if you can...

Title: Re: Verapamil Users
Post by sueellen83 on Jul 6^th, 2003, 10:21am

480mg when in cycle

Through 1 cycle

episodic

no

Intensity was diminished. Shadows mostly. Cycle lasted longer but, was not as bad.

Title: Re: Verapamil Users
Post by smfaison on Jul 6^th, 2003, 3:20pm

1. I take 240mg once a day
2. I started on the 180mg over a year ago and just changed to 240mg maybe 2 months ago.
3. I am episodic, but take the Verapamil for high BP year round.
4. I have not noticed any side effects that you mention.
5. I thought the intensity of the pain dropped when I switched from Atenolol to Verapamil, but this last spell that I am in now has been bad.

Title: Re: Verapamil Users
Post by Dpactech on Jul 14^th, 2003, 8:51am

1. 360 mg once a day

2. For about 5 years (I take it for one month each year (about the length of my cycle when I was not getting medication))

3. Episodic

4. No

5. YES! Verapamil allows me to be pain free.

Though I find that timeing is important. If I take the Verapamil at later time then usual I will get a mild attack which will last for the ususal duration.
NOTE: This time seems to vary with each cycle (may just be waring off at the wrong time)

I recently discovered that going back to sleep immediatly after taking the Verapamil will also result in a mild attack

Title: Re: Verapamil Users
Post by miCHel on Jul 14^th, 2003, 9:34am

Hello!

1. 480 mg/day (2 x 240)

2. 2,5 years (last 3 cycles)

3. Episodic

4. No side effects

5. I think it reduces the frequency of attacks but I just moved up to 480mg at the end of my last cycle so I am not totally sure. I'll have a better idea at the next cycle... but I am in no hurry...

Have a good one!

miCHel