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Title: Need Some Advise...Please respond... Post by boriskaz on May 19th, 2004, 3:52am I am a periodic cluster sufferer since approx. age of 20 till now age of 43. My clsuters have been appearing every 1-2 years and each time they come for approx. 6-8 weeks max. I never used preventative medicine till 1 year go when I was prescribed the following, which worked: 3 times daily 120 mg of Verapamil for 6 weeks 3 times daily Indomethacin for the first 6 days only 1 times in the evening 1mg of ergothamine It worked and I only had 2-3 attacks, after which I had a break till this year (15 months later) February. I have gone on the same medication, but am now past the 3rd month and have tried twice to stop taking the Verapamil, with the effect of huge attacks, which destroy me totally. I am worried about: 1) Why so long this time...it is the longest in my life of 23 years of clusters...I am panicking that I am on the route to chronic.... 2) I have been experiencing a cobnstant whistle in my ear which is extremely loud and won't go away...anyone out there who can help...? 3) I feel that the Verapamil has a lot of side effects: dullness in the back of my head, no desire for sex, not much desire for anything...lack of energy... Sorry to be a crybaby, but am in the middle of this shit and as usual totally helpless and my life has been taken away... I also wanted to ask if anyone has experience with smoking or drinking alcohol during the clusters (I am living like a saint and have once smoked a joint, but had an immediate cluster attack...). I'd appreciate some responses... |
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Title: Re: Need Some Advise...Please respond... Post by thomas on May 19th, 2004, 4:05pm Some cycles are longer than others....... have you tried to not use the indomethicin? It is usually used for CPH and has little to no effect on CH. Welcome aboard. |
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Title: Re: Need Some Advise...Please respond... Post by FZfan on May 19th, 2004, 7:32pm Sorry to hear of your suffering boriskaz. But you've come to the right place for info. Start reading everything available here and at OUCH. Like Thomas said, some cycles are longer than others. It sounds from your post that you are taking preventatives only and not using any abortives. If this is the case, talk to your doc about oxygen and triptans such as imitrex injections, or zomig. Aborting the h/a's that break through your prevents will ease some of your suffering. I highly recommend oxygen myself, but those who can take imitrex injections prefer that. Many folks use both. There are other things you can try for aborting but those are probably the first choices. As for becoming chronic? Unfortunately it is possible, but the only way you will know for sure is if you get less than a few weeks of remission over a period of a year. I cannot drink when I'm in cycle, it instantly triggers an attack, but I have no problem smoking, in fact, I actually smoke more when I'm in cycle. But that's just me, others have different experiences with drinking and smoking. Can't help you with your verapamil questions, but I'm sure others will chime in with their experiences. I sincerly hope you find some relief soon. Best of luck and welcome aboard. |
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Title: Re: Need Some Advise...Please respond... Post by pubgirl on May 19th, 2004, 7:51pm Just a small add on about Indomethacin, it works for a very small handful of CH sufferers (and all CPH sufferers), and unless I'm very much mistaken, if it hasn't stopped the headaches within days on the correct dosage you should stop taking it anyway as it can give very nasty gastric side effects if taken for too long. If it's going to work, it works pretty fast. A good abortive is a must for sanity too as FZfan says Wendy |
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Title: Re: Need Some Advise...Please respond... Post by TxBasslady on May 19th, 2004, 9:47pm Welcome.... Just because the meds worked last time, is no guarantee they will work now. Definitely you need to contact your doc and see if maybe he can find other meds that will help. Also ....ask for 02. This works great for alot of sufferers here. Lots of info located on the left. Read and feel free to print out the info and take with you to see the doc. Hope things get better ....Let us know! PF vibes, Jean |
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Title: Re: Need Some Advise...Please respond... Post by boriskaz on May 20th, 2004, 6:11am Thanks so much to everybody for your replies...it feels pretty lonely and in this period it's been frustrating, since the devil won't go away and seems to want to stay. I have seen my doc yesterday and he simply suggested to stay on the Verapamil for another month without a break and then see if when i stop it will be over. How do you stop the Verapamil...? Slowly in stages or simply stop...? I am not taking Indomethacin anymore, but just Verapamil, so thanks for your advise on the nasty effects of the Indomed. I'll try to stay sane and keep going...I have been taking Imitrex injections for the bad ones by the way, without which I wouldn't realy know how to survive... Thanks! bk |
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Title: Re: Need Some Advise...Please respond... Post by thomas on May 20th, 2004, 10:24am Have you tried something besides imitrex to abort, like zomig or amerge? |
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Title: Re: Need Some Advise...Please respond... Post by Bob P on May 20th, 2004, 10:35am In my 33 years of being a clusterhead, I've had clusters as short as 4 weeks and as long as 15 weeks (my last bout). Actually, for the first 20 years I would get hit every 8-9 months with a 4-6 week long cluster. When I turned 40 the bouts jumped to once every 2 years but the duration of the bouts became unpredictable. Kind of a trade off I guess, longer remissions but longer bouts. When I'm in an active cluster smoking or drinking will trigger an attack. Remain a saint and don't chance it. At 360 mg a day verap that you're taking, stopping shouldn't be a big deal. It's not a very high dose. Most docs will tell you to taper off though. Drop to 240mg for 3 or 4 days, then 120 for 3 or 4 days, then stop. |
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Title: Re: Need Some Advise...Please respond... Post by pubgirl on May 20th, 2004, 2:36pm Boris Unless I'm missing the point here, your Verapimil isn't working, therefore either the dosage isn't right for you (and it can be quite hard to get the dosage right as we are all different), or it has stopped working (which can happen) It may be worth discussing a couple of things with your neuro: Either increasing the Verap dosage (you aren't at the upper theoretical limit yet and in fact are at the level now that the neuros here tend to start at, then increase) this will need careful monitoring via ECG. Or Considering another preventive such as Verap/Lithium combination which works for quite a few people here who have found Verap alone doesn't work. There are others to consider as well if you read up on it on here and on the main OUCH site. Or Considering a Prednisolone course to break the cycle. Again this needs to be carefully managed and tapered and ONLY used short term. Just some ideas to talk to your specialist about. Wendy |
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Title: Re: Need Some Advise...Please respond... Post by EvertBoer on May 20th, 2004, 9:01pm I have also had periodic cluster headaches starting at age 19. I am now 54. I used to get them every year, but then I had a break for a couple of years, then a break for 5 years. Then I had another cluster period just last summer that ended up lasting 7 months. I also worried about turning chronic. It might not mean anything, but it appears to me that the more successful I am at aborting them, the longer the period lasts. I have not had much success with prednisone, depakote, lithium, etc. However, oxygen and imitrex have been a godsend. Using the imitrex injection tip, I was able to use only 1/2 a shot at a time with great success. I only use about 7.5 l/min in the oxygen, but block both exhalation holes and breathe quite deeply. I use the oxygen at night mostly, and sometimes it appears to only stall it off for a few hours, when I have to use it again. If I had to use oxygen more than 3 times in a night, I would use 1/2 an injection for the 4th recurrence. Unfortunately, I was also on vacation this year and had to rely on imitrex for 1 month of the 7. This was the very first time though, that I was able to abort each and every occurrence without any major pain at all. I have the irrational thought that my success stretched it out to last 7 monhths....and the 5 years of being pain free right before my last period. I can't touch alcohol or pot during a cluster period. I'm hoping maybe I'll go another 5 years...but clusters are constantly changing. |
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Title: Re: Need Some Advise...Please respond... Post by miapet on May 21st, 2004, 9:52pm I'm going to hit on the no desire for sex part. If my understanding of Verapamil is accurate, it was designed as a B/P drug .. .and many (most) people suffer from sexual side-effects with b/p meds. *positive light and energy* miapet |
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Title: Re: Need Some Advise...Please respond... Post by Gator on Jun 9th, 2004, 2:54am on 05/21/04 at 21:52:45, miapet wrote:
Depression and stress can have that effect, too. If you're as freaked out about the extended cycle as you sound, that could be part of it, too. The added stress of worrying about going chronic, or even just worrying about your next attack, can just kill the mood. Gator |
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Title: Re: Need Some Advise...Please respond... Post by PPRanch on Jun 9th, 2004, 5:58am With all the various triggers mentioned on this board, the one that we virtually ALL agree with is ALCOHOL.......a definite no-no. Pot has been indicated as a distant (but still considerable) second. Strangely enough, and contrary to the "findings" of many in the medical community, cigarettes seem to have no consistent role in setting off these horror show episodes. In my case, and in the case of some others, cigarettes seem to offer some degree of solace during an attack; probably psychological but certainly NOT a trigger. |
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Title: Re: Need Some Advise...Please respond... Post by Superpain on Jun 11th, 2004, 5:06pm You're nowhere near chronic yet. My cycles and remissions get longer each time, and if I remember correctly my first cycle was no less than 3-4 months. So relatively speaking you are golden! Drinking for me is like telling Freddy Kruger to go fuck himself and then just standing there. Smoking pot (for me) is just as bad. You are correct about the side effects of verap.... Have you tried or asked your doc about a cycle of prednisone? It stops the cycle for alot of people. And how about O2? If you haven't tried that, you are missing out! |
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Title: Re: Need Some Advise...Please respond... Post by crumpledoor on Jun 15th, 2004, 11:28pm I found that smoking has no affect what so ever on the clusters. Alcohol certainly does. I only drink beer but if I drink during my cycly, it will usually make the pain 10 times as bad. I also smoke pot regularly so that too has no affect on my clusters. Check out my post: MY PERSONAL TREATMENT Perhaps this will work for you too. Understanding your pain & wish you the best Matt |
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