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Topic: This Cluster Cycle Different Verap not as helpful (Read 266 times) |
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BobChgo
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This Cluster Cycle Different Verap not as helpful
« on: May 3rd, 2002, 1:57am » |
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I was wondering if anyone out there has any opinions or suggestions. I am 36 have had CH for about 8 years. Typically have one cycle per year about 4-5 weeks I believe but not sure. 2 years ago it moved from the dec-mar timeframe to June. Last year I had no CH at all and thought maybe they were gone. Beginning of april I went into cycle again  .
My attacks can't be nearly as bad as most. I generally ride them out and only do vain attempts throwing ibuprophen and actifed at them which of course do no good but you feel like you are doing something  . I have always been too scared to try imitrex or ask for o2. My basic question - in previous cycles after the first HA I go on verapamil SR 2 X 120mg = 240/day and luckily within a week normally HA no longer get through at all. Normally only get one HA attack per day at nightwithout medication. So I would take the verapanil 240mg for about 3wks with no HA and cross fingers that cluster was over and has been in the past.
This cycle may have started the verapamil a few days later into the cycle. It also seems to have switched to right fro left in previous cycles. This cycle I get the night ones but also during the day sometimes. I am now in week 5 of cluster (week 4+ of verapamil). Most headaches are reduced greatly in intensity and duration and have only been having one every 2-3 days. At the suggestion of those on the board I have switched myself to regular verapamil split tablets in half 4 x 60mgs = 240mg seem to work at least as well as the SR. Do I need to spread dose out into 4x a day or am I being overcautious in keeping drug level constant versus just 2 x 120mg?
Have other people had verapamil stop working as well in later cycles? Just not sure what to do, just scary that the attacks have not been stopped entirely by the verapamil. I guess like a lot of episodic folks get scared that I could becoming chronic. Any comments/suggestions? Should I stay at current dose and cross fingers it will finally suppress or will go out of cycle anyway or should I (seeing doctor not a real option unfortunately) increase my dosage (have enough verapamil available to do it). Slower bowel movement but nothing too bothersome at current dose. In theory my cycle should be close to an end unless duration is changing. Does the cycle ever get longer?
Most of my headaches seem to be 7 or below on Kip, agony but not screaming. Although for me a 3 would wake me up and stop me from sleeping . At this point with the verapamil most HA are 4- on the kip scale with the occasional 6+.
Bottom line why is the verapamil not working as well? and do cycles change like this?
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Not4Hire
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...WAS PF since Oct.'02, but ...oh my...(CBusters)
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Re: This Cluster Cycle Different Verap not as help
« Reply #1 on: May 3rd, 2002, 6:38am » |
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Hey Bob...Sorry you found this forum in that you are a fellow sufferer, but welcome! You'll find lots of info here and I'm glad you are getting some relief with the Verapamil. Others can better answer your questions regarding and I'm sure you will get response. Go Kids!
Regarding your fear of asking for o2: don't be! I use no meds for my CH, only o2 and it works for a large percentage of us. There are no significant side effects when taken as an abortive and it's a lot cheaper than most of the drugs that have shown results. You'll need a non-rebreather mask and a regulator that will deliver up to 12 (or 15) liters per minute. This is important and don't let your doctor try to get you started with low flows OR a canula OR a regular style mask. Go for what WE know works and Good Luck!!
Read up on all the stuff under the buttons at left before asking a lot of questions or the Board cops will roust ya...just a word to the wise........I, on the other hand, am quite patient........NOT!
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NotH20
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Re: This Cluster Cycle Different Verap not as help
« Reply #2 on: May 3rd, 2002, 9:38am » |
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Bob - so glad you found this site. There is an enormous amount of info here - so surf away.
I have only taken the Verap SR and YES as the years progress I find it dwindling down with its effectivness. Upon the advise of the great people on this site, the next cycle I will take the regular type and see if I notice a difference.
I totally agree with Not4Hire regarding the O2. It's extremely effective and very accessible. Click on the OUCH site and read up on this. Also there are many abortives you can take that do not involve an injection and you can check those out on that site too.
Good luck to you Bob - may you find some pain free time....
NotH20
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Drk^Angel
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Re: This Cluster Cycle Different Verap not as help
« Reply #3 on: May 3rd, 2002, 5:33pm » |
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Welcome fellow newbie! (Don't pay attention to the star rating, becaue I've only been posting to the board for under a week... lol) I've just started verapamil, so I don't have any info on that, but I will agree with the others about the O2... The only side effect I've ever had was losin' about 15 mins when I could be using that time to bang my head against the wall, or dance with the beast. In fact, I've found that the O2 is even better than the Imitrex at aborting the CH. The Imitrex for me almost never aborts the CH, but will reduce the pain a few notches on the Kip scale. The O2 has been successful to abort the CH about 75% of the time, and only the extremely bad ones seem to make it through. So definately try to get on the O2. It's amazing how well it can work.
PFDAN............................. Drk^Angel
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Marc
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Re: This Cluster Cycle Different Verap not as help
« Reply #4 on: May 4th, 2002, 4:12pm » |
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Bob,
Unfortunately, yes. Several people here have reported diminishing results with Verapamil over time. At least two people have said that it no longer works at all.
I’m not a doctor, but I think that your dose is too low to be effective for CH’s. Many folks here (including myself) take 360-720 mg per day or even higher.
Research this site and the OUCH site using the links on the left, then talk to your Neuro about bumping up the dosage.
Good Luck!
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The mad viking
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Re: This Cluster Cycle Different Verap not as help
« Reply #5 on: May 4th, 2002, 5:09pm » |
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Hey Bob
You get more info on cluster here then at any neurologist.
I use 2X120mg Verapamil retard /day on regular basis,specially after my heartattack last november.To kill the pain i`m using imitrex shots combined with oxygen.
The strange thing is that my clusterattacks almost have gone since the heartproblem.Only 5 mildely attacks since november.I think the reason for that is that i`m using verapamil on regular base.
Take care my friend
Yours Svenn
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Always Look on The Bright Side of Life
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Ann
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Re: This Cluster Cycle Different Verap not as help
« Reply #6 on: May 5th, 2002, 8:04am » |
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Hi and sorry to say "welcome"! I've been taking verapamil for almost 2 years now. I've recently upped my dosage to 4 times 120 mgs a day regualr. I take it at 6 hour intervals. I was on the slow release verapamil for about a month with no effect. I'm not getting hit as bad as I was. Last attack was on Wednesday...a tiny kip 3..very bearable!! So the regular verapamil is doing the trick. My neuro told me to take it a regular intervals...I think it's important.
As far as O2, I can't help you there..sorry! I use imitrex injections to abort and they are a godsend! They almost always kill the beast within 5 minutes. But some people are not comfortable with the throat tightness. By using just half an injection, I don't get the tightness and it's just as effective...90 % of the time.
Keep researching the site. You're bound to find something you are comfortable with. Hope you find relief soon!
hugs
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