lonewolf1947 Posted February 4, 2018 Share Posted February 4, 2018 I just became active again after a 12 year remission. 20 years ago my suffering was legendary, even for cluster. I am now 70 years old, will my body be able to stand this abuse? Quote Link to comment Share on other sites More sharing options...
CHfather Posted February 5, 2018 Share Posted February 5, 2018 Sorry, sorry, sorry. If there's anything that could be called good news, I guess it's maybe that important things been learned in the last years about treating CH. Most notably, the D3 regimen, which you can read about here: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708. Advances in use of oxygen: high-flow regulators, the mask made specifically for people with CH, and some alternative breathing strategies. If you're not familiar with busting (I know this site didn't exist 12 years ago), that might be something you want to consider (see the numbered files in the ClusterBuster Files section of the board). Not much new in the pharma world, really, except recognition that higher doses of verapamil and prednisone work better than the doses that typically used to be prescribed. Splitting Imitrex injections might be a relatively new thing; I don't know. Energy drinks to abort? Ice water to abort by creating "brain freeze"? Melatonin at night? Trying to think of whatever I can. It still sucks, for sure. Quote Link to comment Share on other sites More sharing options...
Roadie Posted February 5, 2018 Share Posted February 5, 2018 Also extremely sorry to hear this. I know your disappointment! Though it sounds like you've had it far worse than me in the past. I've also enjoyed a long remission - almost 14 years without full CH attacks (and counting) and 11 years with virtually no CH "activity". In my case it seems that the nerve, or nerves affected by CH have become active and give me daily shadows, pains and other unpleasant symptoms without any full-blown attacks to date. This started in June last year so I'm seven months in and every day I'm convinced the attacks are starting. I believed CH was a thing of the past for me. I had a septoplasty op in 2004 and had three children while in remission. I used to wonder whether the op had fixed me, or perhaps the complete change in lifestyle that being a father brings. My hope now is that the pattern will continue. I had a bout of shadows that began in late 2003 and continued for more than a year, save for a few weeks here and there where the shadows subsided. Then in 2006 a bout of shadows began that lasted about 6-7 months. If this IS a pattern, when this bout ends I might get another long remission. They say that remissions lengthen with age. Let's hope that's true for you too. I wish you luck. Quote Link to comment Share on other sites More sharing options...
spiny Posted February 6, 2018 Share Posted February 6, 2018 That sucks so bad Wolf. I advise that you make a trip to Walmart or Amazon and get the vitamins needed to do the D3 Regimen. With Amazon, you will be up and running in a couple of days. Wally World is sketchy for finding K2. While getting or waiting for those, call your PCP and get a test for your D3 levels. You can start the vitamins ASAP. That is the best jump start to keeping your pain low that I know of. Many are pain free just with vitamins. Verapamil is the best pill to take to try to control a cycle. It lowers blood pressure. So, bear that in mind. O2 - pure - is your best abortive. It will be your best friend if indeed you are back in cycle. You need at least 15lpm to abort with. We can teach you how to use it. Medicare will not pay for it. So, you might be jumping into the boat with the Welding O2 users. Easy to do and quickly done. Just don't say that you are huffing it! And since it has been so long, a brain scan is definitely in order. You need to rule out other bad stuff. We have a good group here. We know what it is and we fight it together. Quote Link to comment Share on other sites More sharing options...
lonewolf1947 Posted February 14, 2018 Author Share Posted February 14, 2018 thank you so much for your info. sounds sick but knowing there are others who suffer makes it easier to bear. Quote Link to comment Share on other sites More sharing options...
spiny Posted February 19, 2018 Share Posted February 19, 2018 That is not sick. It is human. No one wants to be alone, in pain, and nobody 'gets' it. Quote Link to comment Share on other sites More sharing options...
charl Posted March 1, 2018 Share Posted March 1, 2018 I'm new to this group, but have had cluster headaches since I was 17. I'm now about to turn 70. It wasn't until my mid 30's that a Dr. finally diagnosed me with cluster headaches and prescribed Lithium. It saved my life. Over the years I've tried the oxygen therapy and it too worked pretty well. For Lithium was a lifesaver. Quote Link to comment Share on other sites More sharing options...
CHfather Posted March 2, 2018 Share Posted March 2, 2018 Very glad this has worked for you. Lithium is usually prescribed as a last resort because of the side effects and because quitting it tends to cause severe rebound headaches. Usually, doctors will first try a preventive such as verapamil, and perhaps a supplemental abortive to oxygen in some form of triptan. If you're fine with the lithium and your oxygen is maximized, you don't need this info, but the vitamin D3 regimen is a very effective preventive without lithium side effects. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Quote Link to comment Share on other sites More sharing options...
charl Posted March 2, 2018 Share Posted March 2, 2018 Didn't realize it was seen as a last resort. I usually don't have to be on it for more than a month to break the cycle. Before I had the diagnosis of Cluster Headache I was prescribed numerous versions of ergotomines and other drugs I can't even remember when they thought it was migraines. I remember the Dr. who finally labeled it a cluster headache also prescribed prednisone with the Lithium. I will forever be grateful to him for ending my pain. Quote Link to comment Share on other sites More sharing options...
Chris Adams Posted March 6, 2018 Share Posted March 6, 2018 charl, I am currently also seeing some success with Lithium. I'm on anywhere from 600-900mg per day. What caused me to pause was the fact you are 70. I was always lead to believe that clusters were something that, generally men, started seeing in their 20's and usually lasted until their 50's. Maybe this was just something that my neurologist told me to get me off the ledge, but I always had that thought that maybe in a dozen or so years (I'm turning 40 this year), I'd be done. So 2 questions to the community 1) Has anyone see their clusters disappear at a certain point in their lives. I mean really disappear. Through regular maintenance dosages of both mushrooms and psilocetin, I almost went 18 months without one. The longest I had gone in the previous 10 years was probably 3-4 months. 2) I'm guessing that busting with lsd or mushrooms is not a great idea when taking Lithium? Anyone have any experiences, good or bad? I mean the Lithium seems to work, and doesn't really give me any negative side effects, but when reading about it, sounds like a nasty drug at times. Thanks and, as always, appreciate everyone on these boards Quote Link to comment Share on other sites More sharing options...
CHfather Posted March 7, 2018 Share Posted March 7, 2018 Chris', regarding your question #2, I know it was strongly recommended at least in the early days of ClusterBusters that people not use mushrooms when taking lithium. Here's a quote from the 2010 CB "bible" created by TommyD: "Anecdotal reports suggest that lithium can greatly potentiate the effects of LSD or mushrooms, and that it can produce very unpleasant feelings. An examination of a number of reports suggested that lithium can either increase or decrease effects. The combination of lithium and tryptamines may even produce episodes that seem like, and that perhaps are, epileptic seizures. If people are taking lithium for treating cluster headaches and it is not working, they may want to talk with their doctor about not taking it any more before trying mushrooms or LSD. If people are taking lithium for bipolar affective disorder, they probably should continue taking lithium, and they should avoid taking tryptamines for cluster headaches." I've been here since right around that time, and I don't believe we've seen anyone report anything about taking M while on lithium. Quote Link to comment Share on other sites More sharing options...
charl Posted March 8, 2018 Share Posted March 8, 2018 Hi Chris, I was a young girl of 17 when I first started getting these headaches. Dr's back then in the 60's and 70's didn't have a diagnosis for me. Mostly they gave me meds for migraines which had no effect. In my mid 30's I paid $100 bucks to go to a place called the Headache Treatment Center and a very old Dr. from Sweden looked at me and said I know what you have and I can help you. Take Lithium 300 mg. 3x a day and Prednisone. I thought he was nuts and he laughed and said "you'll be back." I was. I took the Lithium and overnight it worked. I'm a believer. Since then, I've had periodic remissions, some lasting more than 10 years. I usually stay on the Lithium for just a month. Long enough to break the cycle and that has worked for me. I also tried oxygen once and that was effective. Maybe it's genetic as my father suffered greatly from headaches. LSD and mushrooms are throwbacks to my younger days and I've never mixed them with the Lithium.. Quote Link to comment Share on other sites More sharing options...
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