Jubal Posted May 19, 2013 Share Posted May 19, 2013 Hello all, I'm in my fourth year dealing with clusters. The first two were chronic and it seemed no one or nothing could help me. The neurologist loaded me up on everything from Neurontin to Cymbalta to pain meds. Prednisone was the only thing that really worked, and I begged to get as much as she'd give me. It was all I could do to make it to work, the worst day found me cowering under my desk vomiting in my trash. My boss found it dubious that a 'headache' could make me that sick. After a new doc got me on Verapamil things started to get better. Slowly I stated to have 'clear' periods when suddenly it was like a train got lifted out of my eye. I think quitting smoking helped a lot, too. That was hard, but I'd do ANYTHING to make it stop. I'm finally to the point where I only get attacks a few times a month - most of the year. It was over 100 degrees 60 days last year and it nearly killed me. Anyway, I just wanted to say what a relief it was when I found this site and finally read EXACTLY what I'd been going through. Quote Link to comment Share on other sites More sharing options...
MoxieGirl Posted May 19, 2013 Share Posted May 19, 2013 Welcome, and hugs. We've all been there, people who can't comprehend real pain. Hang in there, lots of good information and people here. MG Quote Link to comment Share on other sites More sharing options...
b.g. Posted May 19, 2013 Share Posted May 19, 2013 Welcome aboard the pain-train! Sorry you are here, but glad to see you. Do you have oxygen? Best regards, Steve Quote Link to comment Share on other sites More sharing options...
Jubal Posted May 19, 2013 Author Share Posted May 19, 2013 Welcome aboard the pain-train! Sorry you are here, but glad to see you. Do you have oxygen? Best regards, Steve This board is the first I've heard of using oxygen - seriously. I'm going to ask my doctor about it the next time I go in. I'm hoping I can find something to help with deep summer around the corner. The heat is my biggest trigger. Quote Link to comment Share on other sites More sharing options...
Jubal Posted May 19, 2013 Author Share Posted May 19, 2013 There's something else I'm wondering if other people experience. When I get a serious flare-up, I know, intellectually, that it's a cluster and it will eventually pass, but there's this panic - like an instinct that my eye is about to literally pop or I don't know what, and the panic is as overwhelming as the pain. Quote Link to comment Share on other sites More sharing options...
CHfather Posted May 20, 2013 Share Posted May 20, 2013 This board is the first I've heard of using oxygen - seriously. I'm going to ask my doctor about it the next time I go in. Jubal, Don't just ask -- insist. And do it ASAP. And . . . If this is the same doctor who loaded you up on all those other meds, s/he might have some resistance to oxygen, even though it is the #1 recommended abortive (in one study, 12% of doctors just refused to prescribe oxygen, for their own stupid reasons). You'll see a lot of info about oxygen, and some suggestions for discussing it with your doctor, in the oxygen page behind the MENU tab on the left side of this page. Do your very best not to be deterred -- oxygen is critical. If this doctor won't give it to you, maybe we can help you find one who will. I'm just gonna paste in here another post I made today on a different thread, about some other things to consider. The first relates to the effectiveness of energy drinks or energy shots as an abortive -- very effective for many people. RedBull is good, as Oscar says. Generally, most people here think that it's the combination of caffeine and taurine that makes "energy drinks" effective, but some people here find that a strong cup of coffee works for them. Others use "energy shots" (5-Hour Energy, 6-Hour Power, etc.) because there's so much less to drink but they have the same amount of caffeine and taurine as a RedBull (or more). Some other energy drinks, such as certain brands of Monster or Rockstar, contain more caffeine and taurine. See what works for you, and then modify. I would say that energy drinks/shots work well for most people. As you'll learn if you're here awhile, things vary greatly from person to person.  Here's some info about caffeine in energy drinks: http://www.energyfiend.com/the-caffeine-database Here are a few other things that work for many people: Melatonin at night (start with recommended dosage and work up to see if it helps you). "Vitamin D3 regimen": http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804. Licorice root: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 BUSTING: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865 Quote Link to comment Share on other sites More sharing options...
Jubal Posted May 20, 2013 Author Share Posted May 20, 2013 Thanks for the links. I'm going to a different doc than the neurologist who put me on all the different meds. This one is just a GP, but he was the first one to suggest Verapamil. The neurologist kept saying that I had migraine and that I had to keep trying different drugs. It was a long, dark time when nothing was really doing anything except zoning me out. Relpax works OK if I can take it as soon as I can feel it coming on. Problem with that is my insurance only lets me have 4 a month. I've fought and fought over that and they won't budge. I'm for sure going to do everything I can to get some oxygen. The weather started hitting 90 this week and it's really spooked me on a visceral level. I'm willing to try busting, but I'll have to start from zero because I've never cultivated anything - except for a taste in BBQ and expensive guitars ... I've spend the day reading up on the site here and trying to weigh what will be the most noob-friendly solution. Quote Link to comment Share on other sites More sharing options...
Jubal Posted May 20, 2013 Author Share Posted May 20, 2013 Another quick question. I see people talking about 'shadow.' I don't know what this means. Is it when the pain is more subdued and just always hanging around with the promise of terrible stabbity at any time? Quote Link to comment Share on other sites More sharing options...
CHfather Posted May 20, 2013 Share Posted May 20, 2013 I'm willing to try busting, but I'll have to start from zero because I've never cultivated anything  You can do what many, many people do: Buy rivea corymbosa seeds, which are completely legal to buy and possess, and very, very easy to convert into the busting agent LSA (which is illegal to drink). If you're like 95-plus percent of people, you won't even get high from it -- but it will work. You can read more about that here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974. Most people here find that tablets like Relpax (it is a tablet, isn't it?) are considerably less effective than an injectable version of the same kind of drug (a triptan), like Imitrex.  You'd have to stop taking that for at least five days if you are going to bust. (You should stop the verapamil, too, but some people have some success with busting while on low doses of verap.) The neurologist kept saying that I had migraine and that I had to keep trying different drugs. It was a long, dark time when nothing was really doing anything except zoning me out.   For what it's worth, the average time between first seeing a doctor and getting a CH diagnosis is seven years. except for a taste in BBQ and expensive guitars  You'll have to come to the ClusterBusters conference (Chicago, September 12-15) and audition for the world-famous FusterCluckers musical group! Some mad skills there.  Quote Link to comment Share on other sites More sharing options...
MoxieGirl Posted May 20, 2013 Share Posted May 20, 2013 Hi Jubal, To answer a couple of your questions. The extreme anxiety or panic you get before and/or after an attack is Post Traumatic Stress. If you can find a civilian (as opposed to military) Post Traumatic Stress test on-line, you'll see that cluster sufferers score really high on it. Before I started taking mushrooms and seeds, I would have a 20-30 minute panic/stress attack after the every cluster. But, that stopped instantly after my first dose of mushrooms (what we call busting). I now get them occasionally, about 3 or 4 times a year. Shadows, I think, are slightly different person to person. I describe a shadow as a presence, an echo, or a fog or smoke in my mind. It is connected to clusters, but for me isn't painful. It is like the demon (my nickname for my clusters) is a shadow, and he's hiding behind a tree, waiting to pounce. Sometimes shadows are a prelude to an attack, but sometimes not. They feel like a heavy foreboding at times. That said, I think that when other people describe shadows, they involve pain. I do sometimes get a bad headache an 1-3 hours before a cluster, and other times 1-3 hours after a cluster. Suppose this could be called a shadow. But, I get headaches 5 days out of 7 anyway, so hard to tell them apart. Need to know anything else, just ask. That's what we're here for. Also, the ClusterBuster Files section is well worth reading. MG Quote Link to comment Share on other sites More sharing options...
atama Posted May 20, 2013 Share Posted May 20, 2013 Anyway, I just wanted to say what a relief it was when I found this site and finally read EXACTLY what I'd been going through.  Hi - I'm a newbie too. Going through the same 'experiments' with medication. :-/ I hope verapramil works! 8-) Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted May 20, 2013 Share Posted May 20, 2013 Hi Jubal - glad to see you're getting info here about the O2, busting, etc. that has gotten many a headbanger off the prescriptions and and enjoying some serious pain free time. I've never cultivated anything - except for a taste in BBQ and expensive guitars Ooh I admire a lot more expensive guitars than I own, but if any of those you've acquired are "vintage" I bet you've actually made some really good inve$tments there. 8-) -Jeebs, member of the Fuster Cluckers, gigs pending at the Bomba Shack. ;D Quote Link to comment Share on other sites More sharing options...
Jubal Posted May 20, 2013 Author Share Posted May 20, 2013 [quote author=6C4B444B4B4C4B5C2E0 Ooh I admire a lot more expensive guitars than I own, but if any of those you've acquired are "vintage" I bet you've actually made some really good inve$tments there. 8-) -Jeebs, member of the Fuster Cluckers, gigs pending at the Bomba Shack. ;D Nope, no vintage guitars. They're a bit beyond what a newspaperman can afford. I have a few really nice players, though, with my pride & joy being my Rickenbacker. Speaking of which, I suppose something good has come from the clusters. Being stuck inside, hiding from the heat and exertion, I took up building stompboxes. I didn't know what a resistor was and now I've been designing my own circuits and PCBs. In fact, I'm starting Calculus class tomorrow with an eye toward going back to school for electrical engineering. @Moxiegirl: I never even considered PTSD. I'm going to look into it. During the really intense moments of a cluster it's like I'm on fire and running around looking for hose that I know doesn't exist. It's funny, though, that the warmer weather this week has me spooked. I assumed it was just pavlovian. Quote Link to comment Share on other sites More sharing options...
CHfather Posted May 21, 2013 Share Posted May 21, 2013 The weather started hitting 90 this week and it's really spooked me on a visceral level. Jubal, I just saw this (below) while I was looking up some stuff on melatonin. Maybe some good nightly doses of melatonin would be a good idea for you. >>>Increased body heat might precipitate cluster-headache attacks by alteration of melatonin concentrations, leading to hypothalamic dysregulation and chronobiological dysfunction. These findings also support a therapeutic option of melatonin in the prophylaxis of cluster headache.<<< http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2805%2972062-6/fulltext Quote Link to comment Share on other sites More sharing options...
Jubal Posted May 21, 2013 Author Share Posted May 21, 2013 Great link. I'll stop on the way home tonight and grab some. Shadows came on hard this afternoon - after about three weeks of clear time. Quote Link to comment Share on other sites More sharing options...
blueballs Posted May 27, 2013 Share Posted May 27, 2013 Melatonin do anything?.. Quote Link to comment Share on other sites More sharing options...
Jubal Posted May 27, 2013 Author Share Posted May 27, 2013 Melatonin do anything?.. I haven't noticed any difference. I'm not sure how much I should be taking, though. Quote Link to comment Share on other sites More sharing options...
CHfather Posted May 27, 2013 Share Posted May 27, 2013 I'm not sure how much I should be taking, though. Start at 9 mg, and add 3 mg up to as much as 18 or 21 mg. I hope it helps. Quote Link to comment Share on other sites More sharing options...
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