littlemountain Posted March 1, 2016 Share Posted March 1, 2016 Hello, I'm from Canada, southern Ontario to be specific, near Guelph. I first developed CH when I was 18, I'm almost 26 now. I have episodic CH, though over the years, my cluster period has increased from just a few days per year, to over a month per year. I'm posting here because I thought it would be nice to talk to people with CH. I find it pretty lonely and frustrating dealing with an illness that is poorly recognized and understood by the public. I find it annoying explaining to people that I have an illness that is "actually pretty serious" even though it's "only a headache". Having read many posts from people with CH, I think my story is pretty common. For the first few years, I was misdiagnosed with sinus headaches, and I had to deal with the headaches with ineffective medications while studying at university (still not sure how a managed to keep up with my school work during these early cluster periods). Finally, when I was 21 or 22, another doctor diagnosed me with CH. Although it was a relief to finally get a conclusive diagnosis and effective medication, learning that CH was poorly understood and as of yet incurable, did little to boost my spirits. I began to see a headache specialist around this time too. But, apart from prescribing me imitrex, they offered little comfort. The specialist never seemed eager to talk about treatments, nor were they available much for appointments. They prescribed me oxygen, but I didn't know how to use it properly. Since finishing my degree, I moved back home and got a new doctor who is far more understanding and helpful. He has prescribed me imitrex, verapamil and oxygen. During my last cluster period, the verapamil broke the cluster period, but the side effects left me feeling ill and with minor headaches. I'm also worried about the long term effects of using verapamil later in life. Through this website I have become far more confident in using oxygen (I also bought the CH oxygen mask). Fortunately, I haven't had to use oxygen yet on a full blown episode (and hopefully will never have to). I also began the vitamin D regimen last July after my last cluster period last June. I haven't used it for a full year though yet, so again, I'm not sure how effective it is. I have noticed that I've been having far less minor headaches than usual (I've been using far less Aleve and Tylenol than usual). I've also think my immune system has become far more robust. Whenever I begin to feel sick (cold, flu, etc), I always feel almost completely better the next day. My last cluster period really freaked me out. I guess it never really hit me before then that I would have to deal with this illness for the rest of my life. I began to worry about the high cost of the medications (imitrex in particular), how I would be able to keep a job when I would be ill for more than a month each year, passing CH on to any possible offspring, the effects of verapamil and other meds on my body, and dealing with the sheer fright and pain that comes with CH for years to come. It got to the point where I spent hours sitting on a chair in my basement away from sunlight in complete stillness, as I believed I could fend off the headaches by doing this. Eventually I asked my doctor to prescribe me anti-anxiety pills and I've been on anti-depressants ever since. I've been doing well for over half a year now, but I find that as I move through my historical cluster period (anywhere between January and June), I find myself worrying more. I have imitrex, verapamil and oxygen ready, but the thought of going through the pain again terrifies me. Yesterday and today I've been having pain flashes on the right side of my head, giving me more cause to worry. I feel so sorry for everybody with this illness. It is so terrible. I can only hope that all are able to find a treatment that brings them relief and peace. Quote Link to comment Share on other sites More sharing options...
CHfather Posted March 1, 2016 Share Posted March 1, 2016 You've made a very eloquent description here of what CH is like for many people, l'm. I am sorry that it's like that for you, too. I'm glad you are on the D3 regimen, and I hope you are doing all the elements of it. I would make a few suggestions: 1. If you can come to a ClusterBusters conference, you will meet lots of people who will know exactly what you are feeling. The 2016 conference will be in Austin, Texas, sometime in the fall. I think the dates have been announced, but I'm not sure what they are. 2. Some people find that they can hold off cycles by preventively "busting" -- using low doses of drugs that are hallucinogenic at higher doses (psilocybin mushrooms and rivea corymbosa seeds are the most common). Have you read about that here? Rivea corymbosa (RC) seeds are inexpensive, legal to buy and possess (just not legal to consume), and there is virtually never any kind of psychedelic experience associated with taking them. Since this is the time of year when might start a cycle, it might be a good time for you to try some RC. If you want to know more, ask. 3. Do you know about extending Imitrex to get more injections from each injector? Saves money, still works, and you're taking in less of that medicine. You can read about it here. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ 4. Oxygen (maybe combined with an energy shot or energy drink) can stop an attack pretty quickly, so you that don't need Imitrex for every attack, or even most attacks. Many people go to that first before they use the Imitrex. 5. The Facebook group "Cluster Headache" is a very, very supportive group of people. You might consider joining that group. I have heard that another FB group, "Cluster Headache Support Group," is also good as long as you don't mention busting . . . but the people I know best and like most are at the "Cluster Headache" group (it's the one with the "pinned post" at the top about 5-Meo-DALT, which might also be an option you'd want to consider). None of this will work any miracles (well, it might, but no promises), but cumulatively it might have some benefit for you. Wishing you the best. Quote Link to comment Share on other sites More sharing options...
littlemountain Posted March 1, 2016 Author Share Posted March 1, 2016 Thanks for the quick reply. I have been thinking about going to the conference, I just don't think I'll have time or money (I'm going back to school this fall). I have also been considering busting options, and I'm hoping to pick up RC or HBWR seeds tomorrow at a shop in Toronto. That way, I can start using them soon, as you recommended. I have also read about extending the imitrex injections,I just have to get used to injecting the imitrex in a more "manual" way (I'm not big fan of needles). Thank you for the tips on the Facebook groups! Quote Link to comment Share on other sites More sharing options...
CHfather Posted March 1, 2016 Share Posted March 1, 2016 In terms of workability, RC is far preferable to HBWR. I don't know what quality you'll get from a shop (just don't know; not saying it will be poor quality). www.tranceplants.net is based in Montreal, and is considered a top-quality supplier. Might be less expensive, too. In any event, you'll want at least 100 seeds for two hopefully-preventive doses. Some folks actually find the self-injecting preferable (and two or three jabs for the price of one, plus less aftereffects, is hard to ignore as a benefit). Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted March 1, 2016 Share Posted March 1, 2016 Hi LM, Some of us have found the terror goes away along with the prevention of complete cycles via busting, and I'm hoping that could be the case with you too. Regarding imitrex, my experience was the first partial dose manual injection required mustering up a lot of nerve (but what a motivator an oncoming attack is!), then after that, manual injections just became a humdrum affair, with the realization that it is no big deal. Pinching a bit of belly fat to the side of the navel has proven to make for a good injection site, and often it is practically painless and so easily accessible. I do empathize with anyone who has a genuine phobia such as a needle-phobia though. In my opinion, until you really get to know who is who, advice received on Facebook is to be taken with a larger sized grain of salt, since you're not as likely to receive advice there from the likes of CHfather and some of the other regulars here, who as I imagine you have gathered, have tremendous knowledge gained over many years in the trenches, and are able to tailor it well to the individual. Quote Link to comment Share on other sites More sharing options...
mit12 Posted April 5, 2016 Share Posted April 5, 2016 LM, Welcome to Clusterbusters. There is a lot of good guys on this site that will answer questions and give you advise. This site has changed my life. I wish the best for ya. Quote Link to comment Share on other sites More sharing options...
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