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Title: At Wits End.....Any ideas? Post by Chronic on May 10th, 2004, 10:43am Hello All, My current cycle is 6 months in and I'm beginning to get in real trouble. Varapamil has always been a real staple for me and was working....but quit out on me 3 weeks ago. As is usual, to compensate, I started a round of prednisone to get the "breakthroughs" under control. The Prednisone (which always works), didn't. I went from 40 mgs, to 60mgs to 80mgs and still nothing. Three - four headaches a day (Thank god for Imitrex). My Neuro placed me on a Dexamethazone (stronger steriod) for 4 days. Besides, ripping my intesitines apart, it was able to cut the breakthroughts down to one masssive cluster a day at midnight. During this 4 days, I began using Zonegran (200mgs taken at nighttime). At the end of the Dexamethazone, the Zonegran had fully kicked in, however, for me, the cure was almost worse than the headaches. I couldn't leave my apartment. I was weak, nauseous, shaking, had trouble focusing, couldn't get out of bed, sleeping all the time, etc. While clusters are the worst.....at least I'm ok when I don't have one.......during this medicated time period.....I couldn't function 24 hours a day.....oh, and by the way, I still had 1 or 2 breakthroughts a day. Well, I stopped taking Zonegran last night and I'm starting to feel a little more like my self. I haven't had a full blown cluster yet, but I just think it is a matter of time. I was hoping that someone out there might have a suggesstion on another way to go. I think I'm running out of "legal" options. So far that covers Verapamil, Predinisone, dexamethodsone, Zonegran and Imitrex. I have tried Lithium with varying degrees of effectiveness in the past, but nothing to write home about. Thanks for any help in advance. Chronic 17 years on and off and counting..... |
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Title: Re: At Wits End.....Any ideas? Post by 5-string on May 10th, 2004, 10:48am Sorry you're suffering. I don't have really any advise for you. But I did'nt read anything about you trying 02?? Have you tried it?? ...Mark.. |
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Title: Re: At Wits End.....Any ideas? Post by Tiannia on May 10th, 2004, 11:52am O2 was my first thought. There are other options, read through the threads on the med boards or look at the links to the side. There are many other meds then the ones that you listed. Print stuff off and go talk to your doc. PF Wishes to you -Tia |
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Title: Re: At Wits End.....Any ideas? Post by kissmyglass on May 10th, 2004, 11:55am Have you tried Lithium & Verapamil together?? saved my ass.... |
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Title: Re: At Wits End.....Any ideas? Post by Luke63 on May 10th, 2004, 12:27pm Oxygen really helped me...and I just found about it after almost 25 yrs of this shit. It has crushed even the meanest Beast invasions this cycle. I am an Oxygen advocate. Have you ever tried Melatonin at all? |
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Title: Re: At Wits End.....Any ideas? Post by Svenn on May 10th, 2004, 1:24pm Verapamil Retard 120mgX5-7/daily during cycle Oxygene alone at 10ltm for at least 15 minutes on a nonbreathermask or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few seconds after that you are almost painfree Prednisolone in high doze for 10 days 80mg then over a 3 weeks periode step down like 60-40-30-20-10-5mg every 3dh day Tapering down the verap im on full dozage 7 days after my last hit,then over the next 5 weeks im down to 1/daily. after 1 week on Verap retard 120mgX1 and still no hits i can quit that to The very best from Svenn |
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Title: Re: At Wits End.....Any ideas? Post by ZAIRA on May 10th, 2004, 5:22pm Hello! If I can help, I take lithium an verapamil..... this combo is very helpful..... To stop the attacks try O2, 15 l/min..... for me it works (not always) and sometimes I do not use Imitrex. I am afraid to read that you are bad...... Good luck from Italy, Zaira |
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Title: Re: At Wits End.....Any ideas? Post by Chronic on May 10th, 2004, 5:47pm Thanks so much for all the feedback..... I have definitely tried O2 many times b4, however, I live in a small apartment in NYC and it isn't easy for me to keep filling up the tanks. Imitrex works well as an immediate treatment (except the cost)...... The Lithium Verapamil mix sounds interesting......I'm trying to clean out my system from the Zonegran side effects right now, but, I think thats the way to go next. Whats the deal with Melatonin....guess I should try to read some old posts..... Thanks again, its always just great to talk to people who understand ;;D |
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Title: Re: At Wits End.....Any ideas? Post by jonny on May 10th, 2004, 5:53pm Hey Chronic dude, Ive been chronic just short of 30 years, for the last 12 or so Ive been on the Verapamil and Lithium. Can you say "Pain free"?......Well, less headaches than I have fingers in the last nine months.........Go for it, Dude ........................................................jonny |
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Title: Re: At Wits End.....Any ideas? Post by Renee on May 10th, 2004, 8:50pm hey chronic, your doc plastered you with the zonegran. it is usually best started at low dosage (25 to 50 mg) and bumped up from there after your body adjusts to it. I am taking 100mg and no longer have the side effects, am a chronic ch'er since 1997 and haven't had a ch in a week. zonegran is good if all else fails but you got blasted with the high end of peak dosage to start out! good luck and if nothing else works, don't fear the zonegran, fear the high dosage. it really works and is a clean med if taken correctly. pf vibes headed to ya renee |
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Title: Re: At Wits End.....Any ideas? Post by TxBasslady on May 10th, 2004, 10:23pm Sorry you're going thru a rough time, Chronic. You might try the Melatonin.....it works for me. Can't hurt to try.....and it's cheap and can be purchased OTC. I started with 3mg. I did have to increase to 4 1/2 mg. for about 10 days. Then I went back to just the 3mg. before bed. Sure hope you find what you need to get some much needed rest. PF vibes, Jean |
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Title: Re: At Wits End.....Any ideas? Post by HypnoticFreddy on May 10th, 2004, 11:41pm There have been a lot of good suggestions in the posts here. Zonegran appears to be one of MANY anti-epileptic drugs that MAY help CH sufferrers as a preventative. I had amazing results wiht another anti-epileptic med called Topamax. If you can handle its side-effects, I'd say try it next!! It really kicked the beast completely in ONE week, I went from 1-2 EVERYday to zero and have been cluster-free now for almost 2 months. Perhaps I am just lucky, but it might be worth a shot. Dexamethazone is a steroid I am guessing like Prednisone. These "transitional" medications seem to only help until the preventative kicks in (or am I wrong? do people take steroids for long periods of time?) There are definitely other preventative meds given to treat clusterhead aches. I think you need to submit to the guinea pig-mode of trying out preventative meds until you find something that works. True, many people do not find any drug that helps. True, side-effects from trying new meds can suck. Neuros should be more knowledgeable in clusterheadache treatment (I know.....some are are't) You didn't get too much help with Verapamil. You mentioned Lithium. Did you use this in combo with Verapamil. It seems to help a lot of people, especially chronics. Topamax performed miracles on me, and maybe can help you too. I don't know. Good luck! -Scott |
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Title: Re: At Wits End.....Any ideas? Post by UN_SOLVED on May 11th, 2004, 12:44am on 05/10/04 at 23:41:01, HypnoticFreddy wrote:
Taking steriods for long periods of time will cause 'bone death' ... along with many other side effects. Unsolved |
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Title: Re: At Wits End.....Any ideas? Post by Woobie on May 11th, 2004, 8:53am on 05/11/04 at 00:44:51, UN_SOLVED wrote:
along with going CRAZY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! :-/ |
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Title: Re: At Wits End.....Any ideas? Post by Chronic on May 11th, 2004, 3:45pm Very Strange......I've been so erratic over the past two days..... Yesterday no headaches last night 2 DOOZIES within 4 hours Today no headaches Wonder what that means, I've never been a nighttime only kind of guy.....hmmmm |
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Title: Re: At Wits End.....Any ideas? Post by echo on May 11th, 2004, 3:49pm on 05/11/04 at 15:45:14, Chronic wrote:
The bastard may possibily be mutating on you. The sick bastard that he is gets a kick out of keeping us on edge. |
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