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Hey guys, this is my first post here and I just wanted to say hello. I started a new cycle on September 4th. This is my fourth time through it. First one started in 2009 When I was 21. I Was diagnosed with CH maybe 4 years ago by my GP who recognized it right away. They come every other day, always at night although each cycle is a little different. Earliest was on Thursday it came at 7 pm. Those are not as bad as the sleeping ones. Last night was the worst. It started around 3, but I feel back sleep, woke up at 5:30 and it felt like my brain was bleeding. They have always been about 45 minutes to an hour, but the last few were closer to two hours and they are getting more intense. Shadow lasts most of the next day, and then the day after a have a lot of tingling during the day before the attack comes on in the evening. It was cool to see a community of people that deal with the same thing that I do. Most people I know really don't get it at all. It's impossible to explain, people get this weird look on their face when u try to talk to them about it. I think I'm one of the lucky ones though. Sounds like a lot of you have it worse than me. I haven't seen my doctor yet, but in the past I have taken verapamil and that worked pretty well. I Took imitrex once. Never again, it was awful. I've never seen a neurologist and haven't had any brain scans done. I have also been diagnosed with severe depression, generalized anxiety, social anxiety disorder, and ADHD, as well as potential Central Auditory Processing Disorder. I took some tests a while back which showed severely impaired short term memory. All that it is to say, does anyone else have similar things a long with CH, and should a see a neurologist or just continue with my GP? I gave up on therapy because they were too patronizing. Sorry that was kind of long winded. Come say hello, and thanks for listening.
Hi all. 33yo Male, chronic migraines 21 years, cluster headaches 5 years. i know I'm going to be repeating common questions because I've seen some already, but the forums are very long and there's so much info I can't possibly take it all in. Apologies. im on day 8 of a cluster, this marks the first time a cluster has exceeded a week for me. The non episodic period is typically been 1-2 years between clusters, and then during a cycle I'm at pain every 12hrs typically like clockwork. This cycle is new, there have been 24hr periods between in some cases, and as few as 4 hours between cases this cycle. Im a chronic transformative migraine sufferer with chronic daily headache. Wake up with a lvl2 or 3 headache that I carry around, 12-15 days a month those will transform into lvl7-8 migraines. I used to think the migraines were 10s on the pain scale until the CHs started. Those are flat 10s every time. They are definitely suicide headaches, I lock the guns up when a cycle starts - last night I was begging my wife from the shower at 2am to just bring me a gun and let me go. They're so bad. this cycle also marks the first time I've nearly ran out of medicine. New Rx coverage is terrible. I need 18treximet a month but can only have 9, for my regular migraines, now with this longer (relative) CH cycle I've exhausted those, I've also obtained a 6 pack of sumavel injectors (the stinging nectar of the gods) and exhausted those, and now I'm on an "out of pocket paid" 9pk of 100mg imitrex that I'm grinding up into a powder and dosing in combination with naproxen for fastest chemical delivery and to simulate treximet. I have 5 left, not sure what I'll do if this cycle extends past the next 3 days... ok, history complete, on to the ask: im reading a lot on the site about LSA, but not seeing as much about it on the forums. I'm not interested in halucinagens for their recreational properties, let's get that out of the way. Am usually a recreational marijuana user but not during migraines or CH cycles because it exacerbates my symptoms, but I've got seedy connections but unfortunately no connections for LSA/LSD etc. has there been any success among you CH veterans with breaking a cycle by micro-dosing using the "legally available to purchase but not consume" seeds and plants mentioned here on the site? Im willing to eat the raw end of a ******'s *** if it will stop or even slow a cycle. I do have an opiod Rx (quantity 30, typically lasts me 3-4 months, used as a prophylactic when a headache is about to turn into a migraine, and used sparingly) but I avoid altogether for CH because it likewise often makes matters worse. Im in dire need of any advice ya'll have learned on your journeys, because the end of my rope is fast approaching and I can't afford the $900 out of pocket on treximet or the $2,400 out of pocket on sumavel even once, and tolerating a migraine without medicine is bad enough, a CH for me unmedicated is unfathomable. much love, and appreciation, ahead of any replies, -D
Hello, I just joined. I am 36 weeks pregnant and have had "classic" migraines of most of my life. About 11-12 days ago I got my first cluster, and it's been every single night since then. These things make regular migraines look like "kid headaches". The pain is unbelievable. Always wakes me up from sleep, always occurs between 10 p.m. and 6 a.m. They peak within 15 minutes and are not usually fully gone for 2-3 hours, with the most painful part lasting around 30 mins. Everything about it fits the exact description of CH. including the location along the left side of my head, primarily behind the eye, around the jaw, temple etc. I have found one person on a pregnancy forum who had this develop around the same time in pregnancy as I have, and it went away when her baby was born. I hope to god that happens to me, but I'm very scared. Because I'm nearly full term, my Dr felt it was safe for me to try 4mg imitrex injections, of which i'm going to try for the first time tonight. (I've taken imitrex pills in the past for my "regular" migraines while not pregnant, and they always worked, but tonight will be my first time with the injections.) She also prescribed a 5 day course of steroids - dexamethasone - which does have some concerns in 1st trimester, but for this far along she feels it's completely safe. I'm of course very nervous, but going on 12 days in a row of a cluster headache every single night - well the pain, lack of sleep, and stress can't be good for the baby either. I have to give this a try. My question is, I know that generally both of these drugs have a history of being more of a "crutch" than a cure - but do either of them ever break the cycle? I really can't imagine going four more weeks like this. I am afraid with imitrex it will stop the cluster tonight, but since mine are daily - will I just get it again tomorrow? I'm not going to feel comfortable taking imitrex every single day, that's for sure. Same with the steroids - I know for most they don't, but does anyone ever report of steroids breaking a cycle?? I guess i'm just looking for some hope at this point. This is all coming from my OB - It's a very long wait to see a neurologist, and I need something to help me manage the pain and get my baby here safely sometime in the next four weeks. I will be seeing a neuro and getting an MRI whenever this super long wait to do so is up.
Hi all, I have been for now about 4 years suffering from very intense pain attacks, their symptoms matches perfectly CH; I have been since a week from now putting that on the account of either tooth aches or migraines that I used to have as a kid, and yearly have been to dentists when the clusters appeared, I have been trying out all kinds of pain killers without any effect beside feeling bad from taking too much of it. Recently a dentist sent me to a surgeon that asked me a bunch questions and he named dropped "cluster headaches" to me for the 1st time, I then went to get brain/head scan and met with neurologist, it is pretty obvious now that I suffer from CH. Reading and discussing the options I had made me pretty depressed as the treatments seem quite heavy and or invasive. So I started to try to 1st put a time frame around my clusters, and thanks to Facebook, I saw those notifications saying "one year ago you did this.." and figured that I am right in the middle of one cluster and this is matching perfectly with the past few years mysterious "tooth aches/insane migraines". I then read everything I can about strategies to cope with the pain and so on, and discovered the potentially effective use of psylo shrooms.. I was pretty suspicious and half amused. Thing is I live in Iceland, and yearly I do pick some shrooms myself for recreative purpose.. I do not eat them often at all and definitely not regularly. Reading about the shrooms we have here, I realise those are called "liberty caps" and contain very high amount of psylocybin. I have never had any problem with eating those shrooms but good experience before, so when reading all about CH treatments, I realise that if there is one that is definitely not harmful that might be the shrooms, and well, what the heck, if that does not work that won't give me cold turkey like the crazy amount of pain killers I tried last year! So, since I am in my cluster period, I just decided to wait for next attack, which happened fairly quick after, always at the same time of the day anyway; As I felt the "shadow" coming I made myself a strong coffee, and took just 3 mushrooms (the liberty caps once dried are very small and this dose is less than a fifth of what I would take for a "trip"), I crunched them, and stick em under my tongue and between gums and lips. Then just had some sips of the coffee and went out and started making heavy breathing exercise. My point here was to accelerate the effect of the shrooms and as well collect lot of oxygen by breathing our dear fresh and cold icelandic air I honestly was scared that the pain would increase as I could feel the pain coming in pretty fast, as usual, and well I would feel pretty stupid to be a lil "shroomed out" with a CH attack on top, that sound like hell to me.. BUT, and this is honestly for the 1st time in my life, the attack just got very quickly aborted! It just stopped! Again this never happened to me! I do not know if this might a placebo effect of some sort, and well, this is the 1st time I try this method. But the abortion of the attack has been very effective this time. And that is quite amazing to me. The psychedelic effects of such a small amount of mushrooms is very, very small, especially if you compare with some other prescribed drugs side effects. I will try this again if another attack comes around and report results here. Meanwhile, I am quite ecstatic about this 1st experience. If it really does work, this is the end of some hellish times. Please tell me if you guys had any similar experience because this seems almost too good to be true. All the best to all of you. <3