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ClusterBusters
DavidinFL

Just joined.. long time follower

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I figured it’s finally time I joined this site. I have been following it for years.. I usually check it out when I am on a cycle.

My symptoms:

My CHs started in my early 20s and I am now 36. Mine are a little unique in that I don’t get them while sleeping. They are usually one per day and in the morning. Each attack lasts about 1 hour with the typical bell curve of intensity. In the middle of a cycle they increase in intensity and I will get them twice a day. Each cycle last for about 2 months and then I get a break from 6 months to a year. My last cycle was 3 years ago. I was starting to think I had outgrown them, but unfortunately I just leaned that is not the case!

My treatments:

Treatments that have worked for me are the oxygen and the sumatriptan injections. I definitely prefer the oxygen because the shots are kind of intense, especially before I learned how to break down the auto injectors 3 years ago. Verapmil did not work for me. I probably wasn’t taking enough. I normally get an attack within an hour of waking up, but I find that if I go back to sleep before the CH gets strong enough, it will abort the attack. It almost always hits me after the second time I wake up though. During an attack, a cold compress to the head helps curb the pain just a little bit. I have been going to the gym every morning at 5:30 during this most recent cycle and have noticed that once I start my workout (heavy lifting), the inevitable morning attack will be aborted... only to come back after I come home and have had my shower. 

This time around I finally have some access to mushrooms. Thus I will be attempting the methods described on this site and will let everyone know my results. 

Question: anyone had any success with marijuana use just before going to sleep at night? Was doing this for a while and it seemed to help me sleep better and might explain why it’s been 3 years since my last cycle. 

 

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Hi David,

Welcome, and sorry you have to be here.

I rarely get clusters when I sleep, 95% or so happen during the day, even when they were really bad. My trigger was more about relaxing. When I got home from work, or even during the drive home, or often when I sat down and just put a film on to chill out, especially on weekends. That's when I would get hit, and it's fairly well documented that a drop in stress will trigger (or allow) an attack. I always worried about getting an attack at work, in the office or while teaching a class (used to be a software trainer). But I think that slightly heightened stress of worrying about it, kept the beast at bay until I got home and de-stressed, then BAM!

So maybe this is what is happening with  your mourning gym routine. You go to a public place and are on a slightly heightened state of alert as you don't want an attack while lifting weights, which keeps it away while lifting weights. But once you get home, have a shower and mentally finish that morning task, the beast comes. 

I've never found cannabis helps clusters, but it does help me sleep and 99% of the time shuts down my insomnia. For me, lack of sleep is a headache/migraine trigger, so having spliff before bed reduces my overall headache count. If it helps you sleep better, I'd say go for it, even if it doesn't directly work on reducing clusters. An attack, any time of day or night, takes a lot out of a person. Getting good sleep during a cycle is important. 

Mox

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Hello!

I'm new to the site as well, and very thankful for it!  I've had CH since my late 20's and am now 47.  I would have considered myself chronic, but then had 4 years of being pain free after a non-related procedure on my neck.  The beast has now returned a couple months ago and was gaining momentum.  It started with triggers from alcohol and progressed to 6+ attacks per day/ night.  O2 and sumitriptan have been the only things effective for me, until now.  A little over a week ago I started Batch's Vitamin D3 regimen and it has given me lots of hope.  I'm down to 1-2 per day and they are reduced in severity.  I've also been taking 25mg of Benedryl a couple times during the day and before going to bed and have noted this to be a huge help too. 

I'm in Colorado where we have easy access to crazy potent cannabis and can say with full confidence that it has no benefit in reducing attacks for me.  I may have even found that it may have even been causing a mild allergic reaction or elevated histamines for me and actually triggered CH at times, especially at night.  I work in the commercial construction industry on large projects and am constantly under lots of stress and long days.   I completely agree with Moxie that a reduction in stress is a trigger and has been for me.  I also have similar luck with exercise.  When having an attack, I'll start doing push-ups and can sometimes abort.  It's quickest to be sucking O2 and doing decline push ups until I can't anymore- but of course that's tough to do in the middle of a work day...  I've never been a good sleeper, but have tried to focus on it recently and will agree it is a very important component. 

I'd encourage anyone to read and try Batch's Treatment Protocol which I've taken the liberty of attaching.  Also look for other related threads in this forum for additional information.  It hasn't yet completely ended daily attacks, but I'm only on day 10 or so.  

CH Preventative Treatment Protocol for Neurologists - Jan 2017.pdf

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Thanks for the info guys! I am a lawyer (litigation) so my job is pretty stressful. 2 days ago I had an attack during a deposition, so I don’t think that stress really has much of an impact on keeping them away for me. It’s more like I get them a certain time of day. It’s 8:40 as I type this and I just aborted my usual 8:30 attack with some oxygen. I expect to get another one at 10:20 this morning. 

I really think that my sleep pattern has a big effect on starting a cycle. I have had a pretty consistent routine of waking up at 6:45 -7:00 the past few years and now that I have changed that up by waking up at 5:00, the headaches have come back. 

I also recently starting taking a vitamin D supplement, so maybe that has something to do with it. I will definitely check out the info on Batch’s. Thanks again.

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