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Title: What would you do??? Post by prcole18 on Oct 1st, 2006, 2:04pm Hi again people, right need some advice if poss. Ok, i'm Chronic (i think :-/) been in this horrible cycle since middle of July. Currently taking 480mg Verap & Melatonin at night. Have been getting up to 6 horrible hits a day, then sometimes only 1 or 2, this cycle is nuts, Ch's are all over the place. Things got so bad last week again I had to start another pred taper purley to get a couple of pain free day's if poss, well I got one anyway :D, then the things seem to beak through the pred, currently coping with just one Imigran jab a day but im sure things are going to get worse as they usually do! Anyway, i'm seeing my Neauro on tuesday & I desperatley want to try & obviously stop these ch's for a while as its affecting work & everything. The Verap dosen't seem to be doing a great deal so would you get the Neuro to up it to say 720 mg?? The only other options I can see is to try Topomax which I don't want to cos of the side effects or try lithium? Again with Lithium i'm not over keen cos of the side effects etc. Don't get me wrong if either of these two were to work, stuff the side effects, being CH free is more important to me! So is the best thing to do 1st, up the Verap & go as high on that with the neauros sayso & see if that sends the bastards into remission before trying the other meds? Just wondering what you guys would do. Any other input or advice, greatly appreciated. Many Thanks as usual. Paul |
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Title: Re: What would you do??? Post by Guiseppi on Oct 1st, 2006, 2:11pm I haven't tried topomax so I can't speak to that. I've been using lithium as my primary preventative for many years. For me the only side effects are I pea a lot for the first 2 weeks, I get a little bit of the tremors in my hands noticeable only to me, and I get a small degree of lethargy, easily overcome with a shot or two of coffee. That's at 1200 mg a day, I weigh 190 pounds for comparison. Good luck to you, sounds like you could use a break. Guiseppi |
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Title: Re: What would you do??? Post by prcole18 on Oct 1st, 2006, 2:28pm Cheers Guiseppi. I just want to clear something up if poss?? Lithium, is this the same Lithium as used for manic depression???? Saw a program on it the other night with Stephen Fry & it looked quite horrific :o. Just surprised as some people on here swear by it, maybe have to give it a go. |
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Title: Re: What would you do??? Post by Charlotte on Oct 1st, 2006, 2:54pm Paul, I felt the same terrified way until I met Guiseppe who is one of the most grounded sane people I've met. I was all ready to request it when I went to the neuro 8-4-06. The neuro threw a wrench in my plan by deciding I do not have ch or cph. I return to the neuro on Thursday. I have idea what he will say this time, but probably more poking with the pin on my face. If you have ch, lithium may work. For some. May not work for others. Also, manic-depression is also a cyclical occurrence. Charlotte |
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Title: Re: What would you do??? Post by Guiseppi on Oct 1st, 2006, 2:57pm Yeah, my doc said that's how they stumbled onto it for ch. The mentally ill with ch would go off their lithium and their ch would come back! One more in a long line of "accidental" medical discoveries! I'm in law enforcement and carry a gun so my medical options are very limited. Lithium has been extremely effective with oxygen, cafergot and imitrex as back ups. When I'm on full dose of lithium my beat partners can't even tell the difference in me so believe me you're not like a walking zombie! I resisted the treatment for years because I had the same misconceptions about using a "mental illness" drug for CH. It may or may not work for you, with this condition you sometimes have to leave your comfort zone a bit! Hoping you find some peace. Guiseppi |
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Title: Re: What would you do??? Post by Charlotte on Oct 1st, 2006, 3:45pm Ask your neuro what he or she thinks, and let us know. I'm going to ask my neuro on Thursday if he thinks lithium may work, or if he considers the treatment plan I'm on to be effective. I believe my current med plan is as effective or better than anything in the past, so I will ask him if we can continue & perhaps modify it a bit. Not good for preventing, but better than ok for pain management. The odds are 75 % that I will have a visual aid for the neuro to look at as I've been getting minicycle after minicycle with back to back hits for over a week. Charlotte |
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Title: Re: What would you do??? Post by prcole18 on Oct 1st, 2006, 5:06pm Cheers for your replies so far people, really interesting. So the decision looks like, weather to just up the verap or try Lithium as well. |
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Title: Re: What would you do??? Post by kcopelin on Oct 1st, 2006, 5:16pm As to upping the verap-many people are on very high doses-my neuro wouldn't let me go over 360mg because my blood pressure is already pretty low (90/50 I tried lithium-didn't work for me-but we are all very different. And I've met Guiseppi-he really is a poster child for normalicy. ::) [smiley=laugh.gif] (Actually he's not noticeably weirder than the rest of us, which says alot...) Good luck prcole! PFDAN ahead for you! kathy |
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Title: Re: What would you do??? Post by E-Double on Oct 1st, 2006, 5:44pm What kind of verapamil are you taking? I had bad side effects on both Lithium and topodumbass yet preferred and had better results overall on Lithium. The difference was blah and confused on lith vs. a vegetable and depressed on topastuff |
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Title: Re: What would you do??? Post by prcole18 on Oct 1st, 2006, 5:51pm Hi E-Double I'm taking 480mg of modified release. Ive heard there are different releases, if this isn't the right one then maybe someone could enlighten me? |
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Title: Re: What would you do??? Post by LeLimey on Oct 1st, 2006, 6:12pm Paul its the sustained release that isn't so effective hon! BTW, I tried Lithium, no side effects whatsoever but no help either. Alot of people find it useful as a combo with verap so you could start one with the other. Good luck whatever you decide to do and don't forget where I am if you want or need anything okay?! Helen |
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Title: Re: What would you do??? Post by prcole18 on Oct 1st, 2006, 6:20pm Cheers Helen. Well at least I know that i'm taking the right kind of Verapamil......all i'd like now is for something to bloody work!!!!!!!!!! |
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Title: Re: What would you do??? Post by chopmyheadoff on Oct 2nd, 2006, 3:33am hiya mate - id ask neuro to boost up the dose of verapamil. im only on 480mg a day but get 99%relief from that. i may have 1ha a week !! im sure others on here take 960mg (I THINK) so there is still room for upping. good luck bro !! chop |
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Title: Re: What would you do??? Post by BB on Oct 2nd, 2006, 4:27am Hi there Whether you should up the verapamil or not depends TOTALLY on how good your heart is and how low your blood pressure already is now. Verepamil lowers your blood pressure so if its already low now you should not increase the dose or you will start fainting !! It also can cause heart block or abnormal heartbeats if your heart cant take it. Your dr will need to monitor your blood pressure AND do an ECG to see if you can tolerate higher dose. If your BP is fine and your heart is OK then its a good idea to up Verapamil first. The dose can be as high as 1000mg. If not then try Lithium. Its pretty safe. The most common side effect is that it does make you a bit tired and lethargic and it causes a little hand tremor that makes your finger grips weak, so you tend to drop things but otherwise its not that bad. Of course the list of possible side effects are long, but you never know which one you would get if any at all until you try it. All side effects of meds tend to get better once your body adjusts to it so dont be too scared of possible side effects. Plus they will all go away once you stop the meds. Good luck with it all and painfree wishes to you. Annette |
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Title: Re: What would you do??? Post by Margi on Oct 2nd, 2006, 10:18am don't let the lithium freak you out - the cluster dose is much lower than that prescribed for bipolarism. My husband has used it in the past and has seen mixed results with it - very similar side effects as to what Eric (E-Double) describes. A morose case of the blahs and confusion that really lingered for him after he tapered off it. He has been as high as 720mg on the verapamil, but he did use the sustained release version of it. I think one option always has to be to consider the possibility of tapering off everything to let your body regulate again and then trying a different route. I'm not sure if the alternatives are an option for you, but I'm a big believer in all things natural in the war against cluster. I can't count how many clusterheads who've seen their cluster cycles extended because of verapamil, and increase of hit frequency with Imitrex (Imigran). Please do discuss this option with your doctor, ok? Oh and you're not chronic - you have to be in cycle for 12 consecutive months without a break of more than 30 days unmedicated pain freedom to be considered chronic. |
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Title: Re: What would you do??? Post by prcole18 on Oct 2nd, 2006, 11:51am Hiya Chop, glad the 480mg Verap is working for you & your only getting one a week. If I only get one a day at present ive had a result! :D Cheers for all the other replies, ive been reading with interest. Margi, the reason I think im chronic is that I don't think ive been more than a week in the last 2 years without a CH, When i m not in a cycle like the one im in now, I will still get a CH at night a couple of times a week at least usually. Annette I know your right about the Verap & the heart stuff, I think I have a good one hopefully so the increase in Verap shouldn't be a problem, anyway I'll see what the neauro says tomorrow. |
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Title: Re: What would you do??? Post by Margi on Oct 2nd, 2006, 12:03pm on 10/01/06 at 14:04:04, prcole18 wrote:
sorry, Paul - I didn't realize that you had been in cycle longer than what you said here. My confusion. |
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Title: Re: What would you do??? Post by prcole18 on Oct 2nd, 2006, 12:35pm Margi no need to apologise. Im in the middle of one mental cylcle, which is in one long cycle, even im confused! :-/ |
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Title: Re: What would you do??? Post by Mr. Happy on Oct 2nd, 2006, 1:16pm Some comments on Lithium Pulsing (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=medsarchive2005;action=display;num=1105293621;start=0) from a while back. Can't find the source anymore, but the recommendation on Verap was Standard, Immediate Release every eight hours. Pretty sure it was a Goadsby comment. |
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Title: MAybe I'm a dope... Post by Richr8 on Oct 2nd, 2006, 5:31pm ...but I've read through here and only see one minor mention of Oxygen by G, and no inidication that you have tried it. Excuse me if you have, but if not, you need to get some today. There is plenty of information posted here on the topic and links on the left. The short version, you need atleast 15 lpm through a non-rebreather mask. It works miracle for many of us. |
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Title: Re: What would you do??? Post by prcole18 on Oct 2nd, 2006, 5:46pm Hi Richr8 I have tried O2, it didnt do a great deal for me. I will mention it again to the Neauro tomorrow & may possibly give it another go. |
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Title: Re: What would you do??? Post by unsolved1 on Oct 2nd, 2006, 11:22pm Just wanted to say ... be careful with these drugs. Find out as much as you can before you take them, if possible. Verapamil @ 400mg/day about killed me when it dropped my BP and heart rate dangerously low. Topamax left me a spaced out idiot and caused kidney stones twice !! OUCH !! Lithium is the only one that didn't hurt me ... but didn't help either. You'll need blood tests soon after you begin taking this. 'Lithium Levels' must be regulated. Goodluck UNsolved PS. How about a Medrol Dose Pak ?? |
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Title: Re: What would you do??? Post by prcole18 on Oct 3rd, 2006, 1:06am I agree unsolved1 with the danger of these drugs. I suppose we're all in the same boat as to trying to find some much needed PF time without doing ourselves any harm with the drugs we take. |
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Title: Re: What would you do??? Post by prcole18 on Oct 3rd, 2006, 5:33am Well people, just got back from the Neauro. He's upping my Verap from 480 to 720mg today. Had an ECG today, everything ok, gotta have another ECG on Thursday after ive been on 720mg for a couple of day's. Seeing the Nearo again in 3 weeks time. If the Verap dosen't work, we could be looking at Lithium, Topomax or another drug beginning with "P" (forgot what the bloody thing was called). Anyway fingers crossed for the 720mg of Verap. PF time to everyone. Paul |
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Title: Re: What would you do??? Post by sandie99 on Oct 3rd, 2006, 5:53am Paul, I hope that verap helps! In my case it did break my chronic cycle in 2005 (and gave blissful 11 months of PF time before the beast made its comeback). Best wishes & PF time, Sanna |
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Title: Re: What would you do??? Post by prcole18 on Oct 3rd, 2006, 6:03am Hi sandie99, what dosage are you on? |
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Title: Re: What would you do??? Post by Trond on Oct 3rd, 2006, 1:18pm Hi Paul Hope that verap will help you, it did for me. I have been on verap the last three years, and have worked my way up to 1200mg, side effects is mostly constipation and low blood pressure, but I have tolerated it OK. Unfortunately it seemed to stop working this summer, and I am now trying lithium as well, but havent been on it long enough to know if it will work. Good look Trond |
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Title: Re: What would you do??? Post by prcole18 on Oct 3rd, 2006, 1:49pm The neauro said about the constipation today. I said well, to be honest, i'm getting the opposite, I cant stop bloody going! |
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