Chris Adams Posted June 8, 2012 Share Posted June 8, 2012 Well, after months of waiting I finally got in to see a neurologist. I was officially diagnosed with cluster headaches, which was a minor relief as at least now it's been confirmed. He discussed many different treatment options, but decided to put me on Prednisone. I'm doing 60mg/day for 6 days, 40mg/day for 2 days, and 20mg/day for 2 days. I'm on day 3 and am a complete zombie. I feel like I've been on a coke bender as I haven't slept barely at all the past 2 nights. I took an Ambien last night that got me down for about 2 hours and up at 1am for the rest of the night. Anyone else have any experience with Prednisone? I haven't had a cluster the past 2 days which is a plus, but I'm on the fence as to whether this may be a good option or not since I'm definitely not myself at all right now. Thanks! Quote Link to comment Share on other sites More sharing options...
kika Posted June 8, 2012 Share Posted June 8, 2012 Of all the prevents I've tried prednisone is the only drug that actually worked. However I found the side effects (wild mood swings being the worst of them) bad enough not to use it again. It IS a miracle drug, but as with many drugs there is a price to pay for the relief it brings. Best of luck to you! Quote Link to comment Share on other sites More sharing options...
Whooligun Posted June 9, 2012 Share Posted June 9, 2012 Tried it last week, some trouble sleeping, slightly moody, but no help at all for my year long cluster. As long it gets rid of the cluster for you, I would tough it out for the duration. Good luck! Quote Link to comment Share on other sites More sharing options...
defectiv Posted June 9, 2012 Share Posted June 9, 2012 i second the it works well but the side effects are hell.. i have tried it twice - once on a similar taper to what your on and it stopped the worst of the pain but made me angry as all good hell.. the second time i was on it for much longer and at higher doses. it stopped the pain almost completely but i gained almost 40 pounds and the min i got off of it the pain came right back.. i would say tuff out the dose and see where you are at the end of it.. if you are not busting then i think the trial is worth it. Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted June 9, 2012 Share Posted June 9, 2012 I think you have no choice but to tough out the dose, since pred needs to be tapered off of. Please put together a nice beast fighting arsenal centered around high flow 100% O2 starting right now so you'll be prepared for any attacks that could come back with a vengeance when you're back down to the lower pred doses. Occasionally you'll hear of someone knocking a cycle out with a pred burst, but it seems rare. Still I hope it could be the case for you. O2 info: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 Drugs like prednisone and the issues with them are what have led so many of us to embrace non toxic, often more effective preventatives such as RC seeds and psilocybin. Quote Link to comment Share on other sites More sharing options...
Nutter Posted June 16, 2012 Share Posted June 16, 2012 It also gave me insomnia. It was a long time ago and I can't remember the details of the cycle or dosage but I decided to stop taking it. I am around 6 week yearly episodic so my decision was based on the fact that I knew there was an expected end in sight anyway. Quote Link to comment Share on other sites More sharing options...
domino Posted June 21, 2012 Share Posted June 21, 2012 did the same thing to me, only i had some kind of allergic reaction to it so they took me off of it. it worked for a little while for me during one cycle but not the other. Quote Link to comment Share on other sites More sharing options...
dooley Posted July 12, 2012 Share Posted July 12, 2012 Hello everyone I'm new here i became a member last week i have not been diagnosed yet but i see a neurologist on Monday July 16 2012 and i will know more of whats going on as far as i can tell all my symptoms point to cluster H.A. all i can say is i tried prednisone in 2010 and it worked for me then the beast came back a few times off and on but nothing to see a doctor about.Over time attacks got worse in 2011 in December and it worked again.I started my latest cycle @ the end of June started prednisone on June 21 and things got worse this time no luck i am now experimenting with Vitamin -M and i think i have almost broke the cycle i am certainly going natural for a while good luck to all i no i feel i need it @ times. the beast arrived in 06 i had no idea what was going on for 4 yrs but things seem to be getting brighter now . Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted July 12, 2012 Share Posted July 12, 2012 things seem to be getting brighter now . Glad to hear it Dooley! I hope your neurologist is an actual headache specialist. If not, you might want to take anything a garden variety neuro says with a grain of salt, since they're often misinformed about CH. Quote Link to comment Share on other sites More sharing options...
TxBust Posted July 12, 2012 Share Posted July 12, 2012 It completely stoped my HA last year i thought my cycle was over but as soon as i got off of it they came back worse and my cycle lasted longer than i remembered them being before.....i would research rc seeds they stoped my last cycle...this year cycle i think has started but is really mild because ive been dosing every three months im redosing tonight and hopefully keep the cycle away all together...... Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted July 12, 2012 Share Posted July 12, 2012 as soon as i got off of it they came back worse and my cycle lasted longer than i remembered them being before..... That seems pretty commonplace - I've seen others report the same thing and I definitely recognize that one from my own experience, although I guess I can't really know for sure whether the prednisone caused my cycles to start lasting longer or if they were going to just go ahead and do that anyway. Quote Link to comment Share on other sites More sharing options...
1EYEcries Posted July 12, 2012 Share Posted July 12, 2012 Steroids work great for NOW, but in the long run they just make matters much much WORSE. As time goes on, you'll need a higher dose to achieve the same results. Stay away from them, there are better options. Quote Link to comment Share on other sites More sharing options...
Pixie-elf Posted July 12, 2012 Share Posted July 12, 2012 Steroids can kill you if you don't taper off, so like everyone said...do the taper. You do not want to go into a steroid crisis. I've been in one, and it's not pleasant. (I wound up with bacterial pneumonia thanks to it.) I'm allergic to all of the damned ones, so I avoid 'em at all costs. I can't say how it impacts a cycle because the only time I had it, was an injection of Triamcinolone in my occipital nerve, and it made my hits about 10x worse for 6 weeks, until the stuff wore off. (It was the only one we knew I hadn't had a reaction to...and after that, I decided NO MORE EVER. FECK THAT.) Quote Link to comment Share on other sites More sharing options...
cookie Posted July 26, 2012 Share Posted July 26, 2012 Prednisone is the only thing I have found that helps me. I hate the side effects for obvious reasons plus the fact it raises my blood sugar. But when it comes down to it and the pain is bad enough I go back to it every time. Sad but so very true. Quote Link to comment Share on other sites More sharing options...
Hipshot Posted July 31, 2012 Share Posted July 31, 2012 I have a total hip replacement as a direct result of prednisone. Avascular Necrosis is what they call my severe, yet not too uncommon side effect. It kills blood vessels. It can affect hip and shoulder joints among others. Bad poison is what it actually is. No way it's worth a week or two being pain free. I wasn't warned about the nasty side effects. Please learn from my mistake. Stay away from roids > Dan Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted July 31, 2012 Share Posted July 31, 2012 Hipshot isn't the only one on here who ended up with his hip shot from prednisone, requiring a hip replacement. And that's just one of the severe, permanent side effects to be acquired from sustained high doses of prednisone. Quote Link to comment Share on other sites More sharing options...
Hipshot Posted August 1, 2012 Share Posted August 1, 2012 Hey Matt, I'll show you my scar in Vegas if you want to check it out ;D Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted August 2, 2012 Share Posted August 2, 2012 Wait a minute this sounds like the "I'll show you my scar if you'll show me your password" ploy that you pulled on poor Ron at the Dallas Denny convention. ;D Quote Link to comment Share on other sites More sharing options...
Hipshot Posted August 2, 2012 Share Posted August 2, 2012 LMAO ;D ...busted Quote Link to comment Share on other sites More sharing options...
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