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alleyoop
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Verap - How high should I go?
« on: Aug 7th, 2004, 9:11pm » |
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OK, here's the history:
First of all, I'm diagnosed chronic.
A couple of years back, my neuro started me on verapamil (2-240mg caplets a day). I had already been on lithium for about a year (started at 900mg, then went to 1200mg a day). When he first started me on the verap, I went for about a month PF. About the time I felt I could start celebrating- BAM, back to the daily hits!
Well, the doc tried a couple more things: pred taper, topomax. Didn't work! I even tried going off meds, altogether. BIG MISTAKE!
Somewhere around the first week of June, '04, the doc bumped me up to 720mg of verap. I again went into remission - 26 days PF! I got hit twice at the convention on the first night (July 26). I got hit hard (5-6 hits at k7- the next couple of weekends. Now I seem to be back in the daily grind again- 2-3 hits daily.
I saw my neuro last week, and after showing him my HA diary, asked him what he thought. He told me if I keep getting hit to up the verap again. I told him that I'd had swelling in my feet for about a week after the last increase, and wasn't that from the verap? He answered, "yes." He told me to just "keep an eye on it."
I don't know what to do. I'm taking 720mg of verap now. If I go up one more a day, that'll make 960mg a day! Don't get me wrong. I love the PF days! I'm just afraid of jepordizing my health for maybe a month of PF bliss. And then once I go up, I'll have to maintain that dosage. It's got to end somewhere!
This neuro has really been terrific. Aside from diagnosing me and getting me on the right track, he has gone to bat for me against the insurance companies. He has given me thousands of $$ worth of trex. He USED TO really take time and sit down and listen to me. I understand as his practice grows, he has less time for that. But there are other little things, like not running lithium level tests anymore. I'm sure a lot of it has to do with the fact that I don't have insurance anymore.
Hey, this is my body we're fooling with here and I've only got one! I've already had two unneeded surgeries performed on me. I just don't want to do something uncalled for and go down the wrong road again!
I would appreciate any and all advice.
Thank you, thank you very much................
...............................................................alley 
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E-Double
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Re: Verap - How high should I go?
« Reply #1 on: Aug 7th, 2004, 9:36pm » |
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I wish I knew what to tell ya brotha.
I personally was scared to up the verapamil. Not nearly as high and it hasn't been that long.
Currently just 480 but getting tempted to up it again since my milds are getting harder again.
Tests are so important. Especially the lithium (toxicity)
and need your blood pressure taken and heart rate measured with the verapamil.
Without insurance I guess super difficult to get these expensive tests.
Do you live near a university/teaching hospital?
Sometimes it is possible to get certain work ups with interns. I don't know if this pertains to us but I don't see why not....
How about some of the free walk in clinics. Possible to get atleast blood pressure taken care of so you have a guide.
Medicare? Medicaid?
Not sure just trying to brain storm for ya.
Still learning about meds myself.
Hope you catch a break!!!
Eric
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Re: Verap - How high should I go?
« Reply #2 on: Aug 7th, 2004, 9:56pm » |
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I believe the maximum dose is 960 mg / day.
People using this much should watch for side effects that can be serious, including dangerously low BP and heart rate.
Be careful,'
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don
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Re: Verap - How high should I go?
« Reply #3 on: Aug 8th, 2004, 9:26am » |
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My suggestion,
Listen to your neuro.
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synergy2120
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Re: Verap - How high should I go?
« Reply #4 on: Aug 8th, 2004, 9:51am » |
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Hi,
One of my fellow supporters from ouch.uk is emailing me the table of the doses on verap and CH for marc (as his dose is too low to do anything) as soon as i get it i will email it to you if you like.
Just PM me your email address and i will send it pronto!
luv sarah xx
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pubgirl
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Re: Verap - How high should I go?
« Reply #5 on: Aug 8th, 2004, 11:46am » |
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alley
The info Sarah says she is going to receive from a supporter at OUCh UK is probably the Verap regime from the London Institute of Neurology, who are world leaders in CH treatment.
960mgs is not at all unusual as a dosage over here BUT it is VERY important that the increases are monitored and managed by your neuro, not self administered and at EVERY increase in dose an ECG must be administered to check the effect on your heart.
It also appears to be very important to avoid the slow release Verap, and also to take the dosage in regular 80mg amounts during the day to keep the levels high enough for effect.
Wendy
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| « Last Edit: Aug 8th, 2004, 11:48am by pubgirl » |
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alleyoop
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Re: Verap - How high should I go?
« Reply #6 on: Aug 8th, 2004, 10:34pm » |
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Eric, thanks again bro for all the research you did for me.
Don, that's just the problem, right or wrong, I don't feel like I can trust my neuro at this point. It may not be his fault so much as mine because I'm uninsured. When I had insurance, everything seemed to go by the book, so to speak. Now, he keeps upping my dosages without running any of the standard tests. Another thing- the last time he told me to try prednisone (I never filled it), he wrote the script for 100- 20mg tabs with instructions, "take 3 tablets every day with food." No taper!
Michael, I'm with you buddy! Right now my bp is ok. I checked it yesterday and it was 127 over 77. I' m really leary about going to 960!
Sarah, I appreciate all of your trouble and look forward to your email.
Wendy wrote:
BUT it is VERY important that the increases are monitored and managed by your neuro, not self administered and at EVERY increase in dose an ECG must be administered to check the effect on your heart.
It also appears to be very important to avoid the slow release Verap, and also to take the dosage in regular 80mg amounts during the day to keep the levels high enough for effect.
That right there I think is enough to keep me right where I am. Although the increased dosage was ordered by my neuro, he isn't monitoring and certainly hasn't ordered an ECG(not that I could afford one). This is the first I've heard of 80mg doses at regular intervals. I'm pretty sure I must be taking the slow release. Maybe you can tell me. The script reads: VERAPAMIL SA 240MG TABLET MYL . They're big blue caplets. I do try to space them out and take one every 8 hrs.
Thanks Wendy for all the good info!
The more I learn, the less I think I need to increase this dosage.
Thanks everyone!
...................................................alley
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Re: Verap - How high should I go?
« Reply #7 on: Aug 8th, 2004, 10:55pm » |
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My pleasure brother!!
Anything anytime 
I wish there was more I could offer yet I too am learning the ropes on the med game.
Hang in there.
eric
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Re: Verap - How high should I go?
« Reply #8 on: Aug 8th, 2004, 10:56pm » |
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A comment about your neuro.....
Understandibly he may be getting busy, but who isn't busy? And understandibly, your time is just as important as his! And you deserve his time just as much as anyone else. It is not his call to make decisions about your care or do tests(or not) based on your insurance situation, it's yours.
I'm not trying to be harsh about the doc, but although some might see him as nice trying to spare you cost, others might see him as negligent.
In either case you should flat out ask him why he's been doing things differently. If you know where he's coming from, you might be more comfortable with a decision to increase the meds(if that's what you decide).
Wishing you PFDAN!(with or without more verap)
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alleyoop
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Re: Verap - How high should I go?
« Reply #9 on: Aug 8th, 2004, 11:47pm » |
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Point well taken, Lionsound! My next appointment, I'm going to make him sit down and talk to me! It'll be a while though. My next appt. with him isn't until Nov. 23 (two days b4 Thanksgiviing).
......................................alley 
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Re: Verap - How high should I go?
« Reply #10 on: Aug 9th, 2004, 5:55am » |
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Hi alleyoop
Sorry to be so slow replying, SA stands for Sustained Action. This means you have the slow release tablets. Not all neuros agree on this one I don't think, but Professor Goadsby insists that CH sufferers should not use the slow release.
Wendy
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ex_pat_asia
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Re: Verap - How high should I go?
« Reply #11 on: Aug 9th, 2004, 7:44am » |
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It is likely much too soon for me to comment on this but I seem to be dancing a fine line in terms of the dosage level for Verapamil. I tried it years ago and it didn't seem to help. Quite frankly I started it and a Betamethasone taper last week after reading the boards here for the first time. I was inspired to try something because of a 3 month episode after 4 years of largely PF (occasional one-offs from behavioral problems like drinking a good red wine).
I got immediate benefits from the drugs but the verapamil slowed my heart to as low as 46 BPM. I was tired and seemed out of breath all the time. I was laready taking co-diovan for hypertension. With the docs ok I quit the co-diovan and continued the Verapamil (2x 240mg per day). Still had a markedly lowerd BP and heart rate (110 over 60 and 56 - 60 BPM). Again with the doc's approval I cut the Verapamil in half. Got two hits in two days...nothing like before the change in drugs...but still bothersome considering I had encountered PFDAN for three days. That is where I am today. Had a major at lunchtime today...KIP8 - 45 minutes.. My 16 year old son looking helpless as I tried to get through the nice lunch we were doing at the time because it's his school holidays and we had just bought his second classic guitar..a much nicer one...and were celebrating (yep..I'm whinin).
Am I encountering anything unusual here? I used relpax today and my current BP/HR is 130/72 and 48 BPM. I am taking Isoptin SR 240mg, once in the moring and once in the evening. Should I break them and go to 4X at 120 each per day? Should I trade the SR (slow release) for another type?
Your thoughts may help. Thay have so far.
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Re: Verap - How high should I go?
« Reply #12 on: Aug 9th, 2004, 8:06am » |
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Quote:| People using this much should watch for side effects that can be serious, including dangerously low BP and heart rate. |
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160mg 3 times a day got me a trip to the ER and overnight in the Cardiology Dept. PLEASE do be careful!!!! 
Robert
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Re: Verap - How high should I go?
« Reply #13 on: Aug 9th, 2004, 8:21am » |
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Prof Goadsby is the one who advises 80mg normal release tablets taken at regular intervals during the day, increasing the dose every two weeks with an ECG until the prophylaxis is achieved to a theoretical maximum of 960mgs.
I think the theory behind this is that the larger dose slow release pills taken less frequently don't keep the levels at a constantly high enough rate and that more drug is taken for less preventive effect.
Verap is a treatment for hypertension, so it would be normal for the BP to drop when you use it . No idea about the heartrate thing though, sorry.
Verapimil users should know more than me about this.
Good moment to remind people about no Grapefruit as well 
Wendy
added: Why Relpax? Are you using it as an abortive?
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| « Last Edit: Aug 9th, 2004, 8:25am by pubgirl » |
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Re: Verap - How high should I go?
« Reply #14 on: Aug 9th, 2004, 1:07pm » |
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on Aug 9th, 2004, 8:21am, pubgirl wrote:
Wendy
added: Why Relpax? Are you using it as an abortive? |
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Goadsby's rationale may make sense. I actually believe I "feel" the levels of verapamil, in the sense that as I near the end of the 12 hour period and before I take the 2nd dose, I feel less breathy and more energetic. Heart rate by then has also come up a bit. BP stays about the same through the period. The Hypertension meds I had taken (co-diovan and Tenormin) were much less noticeable. I didn't feel any different, though with the co-diovan my BP came down and dialed into 130 over 80 +- 4. Verapamil is a much more druggy experience. But as I said, I experienced a rapid improvement when I started it and the steriod taper. So what 's a little breathiness -- small price. of course now I am eager to see all the CA activity go away and then ease out of it.
yes...the relpax is for abortive use. I switched from Immigram (pill form Summatriptan) to Relpax when my GP said it was showing to be quicker acting in clinical trials. I have been begging him to get me some injectable trex which he has agreed to do. I have to get the Relpax in S'Pore, it is not yet available here in Malaysia. I am not able to get nasal spray or injectable forms in either country. I don't visit the U.S. all that often (its been a little over a year) so there isn't much chance to transport injectables. Injectable trex is available to Drs. in Singapore however, and it is this that my GP has agreed to get for me.
I travel a lot, lots of meetings, lots of being in places where medical help is problematic. So kitting out is my only real choice and "fast acting" is a much desirable trait. can't say that Relpax is much faster. My log suggests that I see time to abort of similar disparity between the two drugs. I suspect it is that some beastial visitations are simply more stubborn then others.
I will try the Goadsby protocol. It would be nice to even out the sensations that Verapamil seems to wield on me. Thanks and PFDAN to all.
">]"The trouble with normal is it always gets worse"[/b]
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| « Last Edit: Aug 9th, 2004, 1:10pm by ex_pat_asia » |
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Re: Verap - How high should I go?
« Reply #15 on: Aug 9th, 2004, 3:51pm » |
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Sorry ex-pat, a doctor needs to advise about the symptoms you are suffering from Verap. I know when I am out of my depth! I can supply the regime recommended here, but no more.
Is there no way you can use 02 out there as an abortive? Those pills, whatever triptan they are are just too damn slow for the kind of pain you are in.
Wendy
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don
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Re: Verap - How high should I go?
« Reply #16 on: Aug 9th, 2004, 5:12pm » |
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Quote:Don, that's just the problem, right or wrong, I don't feel like I can trust my neuro at this point. It may not be his fault so much as mine because I'm uninsured. When I had insurance, everything seemed to go by the book, so to speak. Now, he keeps upping my dosages without running any of the standard tests. Another thing- the last time he told me to try prednisone (I never filled it), he wrote the script for 100- 20mg tabs with instructions, "take 3 tablets every day with food." No taper!
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The prednisone thing alone would prompt me to drop him like a hot rock and find another neuro. You know what 300 mg a day could do to you?
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Re: Verap - How high should I go?
« Reply #17 on: Aug 9th, 2004, 5:57pm » |
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oh me ... me. ... I Know .... I know what 300 mg of Prednisone a day will do to you.
(1) Most likely stop all headaches.
(2) Make you blow up like a hot air balloon ... gaining tons of weight within days.
(3) Cause severe constipation
(4) Cause swelling , then pain in your legs and feet.
(5) Start to eat holes in your bones.
(6) Start to affect internal organs.
(7) You become wheelchair dependant.
{8} Death
I think that about covers it.
PS. In the quote above ...(posted by Don) ... it says 60 mg a day for approx 3 months. This amount will also have HUGE side effects ! You can at least expect #1 thru #5 ... and with no taper ... you can expect #8 !!
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| « Last Edit: Aug 9th, 2004, 5:58pm by UN_SOLVED » |
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Kris_in_SJ
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Re: Verap - How high should I go?
« Reply #18 on: Aug 9th, 2004, 8:24pm » |
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Alley - you must be scared sh!#less reading all this!
This much is true ...
- Many sufferers go up to 800mg Verapamil/day with no bad side effects (except for the constipation, of course - which is devastating enough). The fact that your ankles were swollen last time you increased, indicates that your heart wasn't pumping quite hard enough to push the blood back to your heart - could be lower BP or lower heart rate. You need to watch for both if you increase again. Stop in the local pharmacy or superstore and get your BP & hear rate taken.
- Many doctors recommend taking regular Verapamil instead of sustained release. I can only say that I've had fine results with the sustained release. It's much more difficult to maintain even blood levels with the regular.
- There are other Calcium-channel blocker meds out there. Don't give up!
- Keep working until you find what works, but do be careful about the Prednisone - for a miracle drug, it sure can wreck your overall health (and appearance).
Hugs,
Kris
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Re: Verap - How high should I go?
« Reply #19 on: Aug 9th, 2004, 9:34pm » |
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Quote:| You know what 300 mg a day could do to you? |
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Quote:| I know what 300 mg of Prednisone a day will do to you |
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Sorry guys. 3 tablets of 20mg will make .......60mg only. You got confused with the 100 tablets of 20mg. 
Robert
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Re: Verap - How high should I go?
« Reply #20 on: Aug 9th, 2004, 11:11pm » |
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on Aug 9th, 2004, 8:24pm, Kris_in_SJ wrote:| ... The fact that your ankles were swollen last time you increased, indicates that your heart wasn't pumping quite hard enough to push the blood back to your heart ... |
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Oy, oy, oy, this notion of how the body works would be worthy of snake oil peddlers like cleon. 
When the outgoing blood reaches the peripheral capillaries, the pressure has dropped to zero. On the way back to the heart the only pumping action comes from the repeated squeezing and releasing of the veins, due to our moving. This back transport is helped by one-way valves in the veins. Unfortunately there are not many of these valves where they would be needed most, in our legs. People that do a lot of standing (contrary to walking) are therefore most prone to varicose veins and edema (swelling) in the legs, due to the fact there is not enough motion to pump against hydrostatic pressure. For some people Verapamil can worsen this problem, due to the relaxing of the smooth muscles around the veins (the one-way valves are more leaky in a relaxed vein).
Quote:| ... It's much more difficult to maintain even blood levels with the regular (Verapamil) ... |
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True, the blood concentration of Verapamil is quite bumpy with only 3 or 4 dosings per day (half life ~ 6 - 8 hours). But this doesn't hardly matter, since Verapamil itself does nothing at all against cluster or high blood pressure. Some of the many metabolites of Verapamil are bringing the desired results. These metabolites have a much longer half life, as indicated by the fact that for most clusterheads it takes a week or more for dose adjustments (up or down) to show an effect.
Although it's not quite clear, it looks like the mix if the metabolites is not the same for regular, slow release (SR,ER) and delayed release (HS,PM) Verapamil.
The experience of Goadsby and other indicate that for a clusterhead regular Verapamil is best and slow release least suitable.
And here one of my pet peeves: People calling Verapamil a "blood pressure medication".
The calcium channel blocking does relax overtight arteries and lowers the blood pressure for patients affected by that. For a clusterhead, with normal BP and normally relaxed arteries, Verapamil has hardly any influence on the BP.
PFNADs
Ueli 
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Re: Verap - How high should I go?
« Reply #21 on: Aug 10th, 2004, 6:58pm » |
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on Aug 9th, 2004, 11:11pm, Ueli wrote:
For a clusterhead, with normal BP and normally relaxed arteries, Verapamil has hardly any influence on the BP.
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Depends on the dose ... 
It can have a HUGE effect !
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Re: Verap - How high should I go?
« Reply #22 on: Aug 10th, 2004, 7:19pm » |
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Have to agree with Mike on this one. I'm on 480mg/day SR and I have definatley noticed BP problems. My bp will sometimes drop low and I will experience dizziness or lightheadedness.. Gp attributes it to the verap.
PFDAN!
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Re: Verap - How high should I go?
« Reply #23 on: Aug 10th, 2004, 9:37pm » |
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on Aug 9th, 2004, 9:34pm, Robert_C. wrote:
Sorry guys. 3 tablets of 20mg will make .......60mg only. You got confused with the 100 tablets of 20mg.
Robert |
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Don't think you read the whole thread.
on Aug 9th, 2004, 5:57pm, UN_SOLVED wrote:PS. In the quote above ...(posted by Don) ... it says 60 mg a day for approx 3 months. This amount will also have HUGE side effects !
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Unsolved
We know you can't do 300 mg a day for more than a couple of days. It would kill you pretty quick !
On the other hand .... 60 mg a day for 90 days and ....well....you'll regret it.
How long have you been doing 60 mg a day ? How long do you expect to do this amount ? Are you going to taper off of it ?
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Re: Verap - How high should I go?
« Reply #24 on: Aug 13th, 2004, 10:49pm » |
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Mike,
Sorry(no excuse), but I just got back to this thread(mine, I know) and read your last response. If you reread what I wrote, you'll see that I said I never filled the prednisone script. I was just upset that my neuro had written it the way he did. He wrote it for 100 ea (qty)- 20mg tabs. His instructions were:" take 3 a day." my words- NO TAPER!
BTW, I agree with everything you have said here.
How are you doing here lately? Any relief at all, or are you still getting slammed? How about that alternative therapy, are you still considering it?
I'll try not to be so slack about reading my OWN strings from now on.
Wishing you and everyone else PFNADS.............
.................................................................alley
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