crosstraining Posted August 18, 2010 Share Posted August 18, 2010 Hey, my 1st post. First off this is a great community!! I have rarely seen the compassion and caring for others that I have seen here. Short summary: Ch's started about 8 years, get a cycle about every 2 years, cycle lasts about 2 weeks, 3-4 CH's a day/night. So I started a cycle about 3 weeks ago, so it is longer than my norm. I tried prednisone to break it up, but my old friend came back during the taper down. My Doc wants me to start Topamax. The few posts I have seen did not seem promising. Can anyone tell me their experience of it?Thanks Quote Link to comment Share on other sites More sharing options...
johnny Posted August 18, 2010 Share Posted August 18, 2010 i have never used any pharmaceutical drugs however i have heard from many that topamax really spaces you out. Quote Link to comment Share on other sites More sharing options...
johnny Posted August 18, 2010 Share Posted August 18, 2010 pay close attention to batch in this thread about predsidone http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1278919288/2#2 Quote Link to comment Share on other sites More sharing options...
Cassidy Posted August 18, 2010 Share Posted August 18, 2010 Hello Crosstraining, I have used Topamax. I used it for aprox. 2 months, about 6 years ago. By the time I was on my second refill, I had trouble remembering my name. And I didn't care that I was flushing another $150 prescription down the toilet. Maybe with time I could have adjusted to it, but I didn't choose to waste anymore time or money on that drug. It is a drug that you need to taper off of. If someone is considering the busting method, I would not start Topamax. BTW, that was the last prescribed drug that I took for clusters. It was the final straw for me. Just my experience. Best of luck with what ever you choose to do. Sorry you are in pain. Leslie Quote Link to comment Share on other sites More sharing options...
tingeling Posted August 18, 2010 Share Posted August 18, 2010 Welcome It it was me, i wouldn`t start it. I would go for this treatement first. For me, there was allot of side effects, and you have to take it in high doses, everyday. This you take once in awhile. Good luck to you Quote Link to comment Share on other sites More sharing options...
crosstraining Posted August 18, 2010 Author Share Posted August 18, 2010 Thanks for all of the responses. I have only had shadows for the last 36 hours, so hopefully my cycle is coming to an end. I think I will see how the next few days go. I am going to hold off from taking the Topamax for now. Thanks again Brandon Quote Link to comment Share on other sites More sharing options...
johnny Posted August 18, 2010 Share Posted August 18, 2010 heres a good thread on using o2 for shadows. its what i recommend over taking pills http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1278176345 Quote Link to comment Share on other sites More sharing options...
Jeff_007 Posted August 19, 2010 Share Posted August 19, 2010 Hi CrossT, I was on Topomax for the past 3 years. I get a cycle every spring so I would start it at the first sign of a shadow. This summer, it stopped working for me. I even believe that it made the CH worse once they finally broke through it. Its not something anyone wants to take in my opinion. I was very disoriented all the time. No concentration whats so ever. I couldnt even give my daughter a bath as I would walk away and forget she was in there. NOT GOOD!! No appetite either and no sex drive. (Sorry guys, had to throw that in) I recommend holding off on this as long as possible and try some other methods stated on this site. Good luck! Jeff Quote Link to comment Share on other sites More sharing options...
shaggyparasol Posted August 19, 2010 Share Posted August 19, 2010 Hey CrossT. Most of us here are not big into the pharmaceuticals. Either we never tried that stuff or it was so bad we came here. The good folks at www.clusterheadaches.com will be your most thorough source of good and bad info on those drugs. Sister website, great (sometimes gruff) people, caring etc. Check them out too. --Shaggy Quote Link to comment Share on other sites More sharing options...
dhr34 Posted August 19, 2010 Share Posted August 19, 2010 I have used topamax. They call it the "stupid drug" with good reason. It does not work on clusters and will actually make you stupid. After a week i had to leave post it notes everywhere. After 2 weeks I would forget to read the post its! One of the worst drugs I have ever taken. Don't put that crap in you're body! Quote Link to comment Share on other sites More sharing options...
raquelinkansas Posted August 20, 2010 Share Posted August 20, 2010 Brandon, Welcome! Try to stay away from it if you can. I took it for 4 years. I just quit taking it a couple of months ago and have vowed never to get back on it. It does not make any difference. Cycles will still come. Also, if you quit taking it a cycle will start up. I think it actually made my cycles more frequent. Its just scary. I think it makes some people worse off. There needs to be more studies on this drug for CH treatment, I don't think I have heard anything positive about it on this board. Seeds and Mushies are the way to go, I see them as a gift now, from mother nature. Scripts, for me personally dont work for long, if at all. Quote Link to comment Share on other sites More sharing options...
crosstraining Posted August 24, 2010 Author Share Posted August 24, 2010 Well, it has been about a week and I have only had 3 CH's. I hve not taken the Topomax, and I don't think I will. Why are dr's prescribing this if it is not effective? My Dr. is a neurologist, shouldn't he know about this stuff? He did prescribe me some Maxalt melt tabs. It is not near as good as Imitrex is for me. It takes at least 45 minutes to have any effect, but my insurance will not fill enough Imitrex. I am going to talk to my Dr. about O2, so hopefully I can start that. Thanks for all the help Quote Link to comment Share on other sites More sharing options...
Guest Posted August 24, 2010 Share Posted August 24, 2010 Why are dr's prescribing this if it is not effective? My Dr. is a neurologist, shouldn't he know about this stuff?  It is not near as good as Imitrex is for me. Hello crosstraining, Doctor's, & Neurologist's are bound by what pharmaceutical companies give them to operate with. All of the drugs we are prescribed were never intended for CH. Most have been piggy backed off of the back of Migraine research. It's just given to us in larger doses, & lets hope for the best. Imigran is another fine example of this, & as with the Topomax, you would do to stay well clear of this drug. As has been suggested by others in this thread. Oxygen is by far the best way to deal with the hits. You may also want to read up, & consider RC seeds for your next cycle. Whatever, I wish you well. CArl... Quote Link to comment Share on other sites More sharing options...
Gaius Posted August 24, 2010 Share Posted August 24, 2010 Topamax should be called Dope-A-Max. Several years ago my neuro suggested I give it a try. It took only one dose to let me know that was not for me. I took it at bedtime and when I woke up the next I was so messed up there is no way I could've done anything requiring mental acuity or physical dexterity. That said, it has helped some people. You might want to go over to www.clusterheadaches.com and ask over there - they generally have more experience with pharmaceuticals. Hope the cycle ends soon for you. Quote Link to comment Share on other sites More sharing options...
raquelinkansas Posted August 24, 2010 Share Posted August 24, 2010 Well, it has been about a week and I have only had 3 CH's. Thats great! [smiley=thumbsup.gif] The Maxalt didnt last long for me. Got immune to it real quick. Check out some seed busting stories for your next cycle if you havent already. Quote Link to comment Share on other sites More sharing options...
crosstraining Posted August 26, 2010 Author Share Posted August 26, 2010 As has been suggested by others in this thread. Oxygen is by far the best way to deal with the hits. You may also want to read up, & consider RC seeds for your next cycle. I have been trying O2 some. I have had limited success. Tonight I did 15 minutes at 15. No effect, so I took a 30minute break and did again. Still not much help. I don't know anything about RC seeds, but at this point I'll try anything. I am going to start reading up about them tonight. Thanks Quote Link to comment Share on other sites More sharing options...
crosstraining Posted August 26, 2010 Author Share Posted August 26, 2010 Well, it has been about a week and I have only had 3 CH's. Thats great!  [smiley=thumbsup.gif] The Maxalt didnt last long for me. Got immune to it real quick. Check out some seed busting stories for your next cycle if you havent already. I may have spoke too soon. I have had 3 more today :'( I am going to start researching seed busting. I don't know anything about it. Thanks Quote Link to comment Share on other sites More sharing options...
raquelinkansas Posted August 26, 2010 Share Posted August 26, 2010 Do it, and dont be shy about it! Get-r-done! Quote Link to comment Share on other sites More sharing options...
crosstraining Posted August 27, 2010 Author Share Posted August 27, 2010 Do it, and dont be shy about it! Get-r-done! I ordered some RC seeds. Not looking forward to detox, but it sounds like it will be worth it. Hopefully bust this cycle (my longest so far). Thanks Quote Link to comment Share on other sites More sharing options...
tingeling Posted August 27, 2010 Share Posted August 27, 2010 Hang in there We`re here to support you along the way, you know Quote Link to comment Share on other sites More sharing options...
Sandi Suddaby Posted September 8, 2010 Share Posted September 8, 2010 In Aug. 2003 (after 4 years of no CH) I was on verapamil, lithium and later the neuro added Topamax - I could barely think at 100 mg. but was advised hang in you'll adjust and I did. Gradually up to 400 mg., 300 lithium and 480 verap. And yes, I worked and actually could think...but I still had bouts of CH so it wasn't really a great preventative cocktail after all! I always used 02 also at 12-15 lpm for 10 -12 min.  I was chronic from 2003 to 2009 summer and then ended! Until this August. DANG! I had tapered off the above in Dec. 2009 and except for 2 or 3 brief times, was PF until Aug. Tried RC seeds once and got more hits than before I took them; was going on vacation so back to verap. at 180 for 5 days, then doubled it; a 6-day course of prednisone too. I was desperate to enjoy a vacation! I had a lot of CH on the trip - no fun with no 02 available (Alaska fishing the rivers on a small island). I hate to think of going back on conventionals so hope to taper off again and try RC again though it seemed I sure had some hits afterwards - unless a cycle had just started. I was hoping for a 4-year reprieve again!   Sandi Quote Link to comment Share on other sites More sharing options...
raquelinkansas Posted September 8, 2010 Share Posted September 8, 2010 Sandi, try different seeds. Maybe Hawaii Baby Woodrose. Brandon, hows it going? Yes, detox sucks, when I did it I had the longest cycle ever but I was finally succesful busting with the HBW seeds. Hang in there! Rock Quote Link to comment Share on other sites More sharing options...
crosstraining Posted September 17, 2010 Author Share Posted September 17, 2010 Sandi, try different seeds. Maybe Hawaii Baby Woodrose.  Brandon, hows it going? Yes, detox sucks, when I did it I had the longest cycle ever but I was finally succesful busting with the HBW seeds. Hang in there! Rock I finally got through my cycle. It has been over 2 weeks of no CH's, not even shadows. I waited for 2 weeks on my seeds, but they never came. I called iamshaman and they said they discontiued the RC's. There was some computer glitch that allowed me to order them. I will definately do the seeds next cycle, but hopefuy that will be awhile. Thanks for all the help!!!! Brandon Quote Link to comment Share on other sites More sharing options...
Bonkers Posted September 17, 2010 Share Posted September 17, 2010 In the meantime, order your seeds so you have them on hand and read up on how to use them. For sure, read "LSA for Cluster Headache" in the ClusterBuster Files. Good luck. Quote Link to comment Share on other sites More sharing options...
Perediablo Posted September 17, 2010 Share Posted September 17, 2010 I hate Dopeymax. I was on it for almost 3 months. No appetite, no sex drive, stupid, and suicidal. What an awesome drug...yeah right. STAY AWAY!!! Leave it for epilepsy as it was intended. Pharmaceuticals are not cool. There isn't a man-made drug that is good for you. Listen to these wise folks here. I did and I'm much better off now. Read all you can and learn-up about them there seeds n stuff. HEre's hoping for pain free! Eric Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.