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Hi everyone, I'm new to this site, and I'm wondering if many or any cluster headache suffers have also been told or been exposed to Lyme's disease? My husband had cluster ha's before getting Lyme's, but where in the past he would have the clusters, then they would stop for a time, he now has residual pain that never leaves. He struggles with sleep every night, cannot look at a computer screen or television, or bright lights. He no longer drives at night. He just started the D3 infusion yesterday, so we are holding out for relief from that. I am wondering if there is a Lyme's component there too. Not that cluster's aren't enough. Thanks.

does anyone here have any idea about doctors in India who treat CH and TAC?

Hi, I'm new to this forum. I have struggled with chronic migraines for 5 years, I have Botox every 12 weeks for them. I was recently diagnosed with cluster headaches and prescribed Verapamil and O2 therapy. I've been reading a lot on this page and am interested in busting. But, where do I start? How do you deal with the pain? I get so agitated and snappy during one, I feel like everything is moving. It's like I want to crawl out of my skin and find a new shell lol. I just feel very lost.

Cluster headaches my natural remedies: lachnanthes tinctoria D6 3x5 Calcium phosphororicum D12 MSM 2x /Day minimum (in phase up to 20 spoons or capsules) Black cumin oil (takes out the inflammation) Carnosin (2-4) Nato (Makes blood thinner) Cortison homeopatic (worth a try) Q10 Wobenzym (German name of it) Psilocybin - Magic mushrooms) 1.5 - 3.5 and 4 Grams. Note: Not legal, but who the Fxxk cares. Oxygen 15L/Min - Helps short time for me Water fasting - I haven't tried but will My Triggers: Glycerin Cigarettes Beer Whine Others I am not aware of yet Cycles start with late winter, early spring mostly: January - 10 February Antihistamines and nicotine do not trigger my clusters. My allergies start around April - May usually. This year in March, due to warm weather. First time I took antihistamines during a cycle but not before the clusters. So for me it's not a trigger. Important Note: Glycerine (heart patients and electric cigarette smokers etc..) This will 100% trigger the clusters cycle. In fact, it's a way doctors in neurology diagnose cluster headaches. For eSmokers... There is liquid without glycerine. Now the pharma medicine list I have used and partially use today, when all else fails. 1. Sumatriptan-Hormosan Inject 6mg/0,5 ml This one way single shots take the pain away for me. However, they completely take me out as well. All I can do is sleep and after that illl benumb, dull, drowsy and not able to focus on anything. Heart issue patients be careful as the side effects can influence, effect and cause severe heart problems. 2. Zomig nasal spray 5mg Helps me for a short while only but it can bring relief. 3. Prednison 20mg(cortisone) - first 10 days 120mg a day - 8 days to 80mg a day - 4 days 40-50mg a day - 2 days 20mg a day Seriously, as much as I hate taking this crap cortisone, it almost instantly after starting with it, ended my cycle. So from all the chemical pharma this is my number one if all homeopathic options fail to keep it at bay. The long term side effects of are numerous and nasty and I simply dispise using it. 4. Verapamil (Betablocker) I will list it here, but have nothing to say about it, accept that it is used as part of the cycle cure listed above under the pharma meds. This crap has an effect on libido, the heart, and all kinds of other things in the body. I never used it. However, I would, if all else failed.

Hi all, episodic cluster sufferer here. I have had cluster headaches on the left-side of my head for about 9 years now. I have tried everything from triptan medication to prescription medical oxygen. The only thing that has really worked to abort the attacks is the oxygen, and that is only convenient when it is available and works completely. Recently, I have been doing a bit of research and experimentation regarding the trigeminal nerve and intranasal application of capsaicin (hot pepper extract). I have had great success with this, and my cluster headaches have been less frequent, as well as the pain of attacks has been reduced greatly. For a high level overview of why/how this works, please reference this video. Also, here and here are published studies. Method: The method that I use to accomplish this is relatively simple - Instead of using pure capsaicin extract, I use really hot peppers and a Q-tip. Lately, I have been using bird's eye chilies, but really any hot pepper hotter than a jalapeno should work. I take a sharp knife and slice the pepper down the middle. From there, I spread it open and roll the Q-tip around inside of the pepper, while pinching the pepper around the Q-tip to get the most liquid that I can. After that (make sure there is no debris on the Q-tip, first), I place the Q-tip directly inside of my nostril on the side that I experience headaches on (for me, it is my left side) and rub it around directly on the mucous membrane inside my nostril. Immediately, you can feel the burn. Here's the thing - the first time I did this, it hurt like holy heck. The second time, it hurt, but not as bad as the first time - this pain continued to subside with daily application, and I currently barely feel anything when it is applied to the inside of my nostril. It is best to place the Q-tip directly inside your nose and apply, then when your nose starts running, inhale through your nose to get it a bit further up there. If you are doing it correctly, your eye will automatically begin to water (just like during a cluster) and you possibly may begin sneezing. I have done this twice a day for the past month, and my headaches have decreased greatly in both pain and frequency. I believe there is something to it, and suggest that others give it a try. I should definitely be amid a cluster period right now, but have been for the most part headache free. I understand that it sounds a bit bizarre, but I was willing to try anything to get my headaches under control. This seems to be working for me, and I couldn't be happier. If you have any questions, feel free to ask. Thanks!

Hi All, In the past few weeks, I've been doing a lot of renovations, and the fall is here, and I've started getting cluster headaches again. But this time I only had one full-on blown headache, and it was a 1 on the 1-10 scale of cluster headaches. I've had shadows 10 or 15 times, but I wouldn't call them full blown headaches. The frequency and intensity of the shadows has been decreasing, and they're almost gone after 2 weeks. So I'd like to share how I've come to basically eliminate cluster headaches from my life. I'm quite confident that knots in the neck are the primary cause of the cluster headache. I use a trigger point cane massager to relieve the knots, and this has prevented cluster headache for a couple years. I also practice an active form of relaxing the muscles in the next and back, and work to preserve go is standing and sitting posture. If you're just starting a cycle, the trigger-point massage can provoke shadow-type cluster headaches, but rarely full-blown. It is not an effective treatment IN THE MIDST of a cluster headache, but it doesn't do any harm and the pain couldn't be much worse, anyway. I discovered this relationship after 20 years of cluster headaches, with a 2 to 3 month cycle coming every 2 or 3 years. Many people experience knots in the neck during a cluster cycle, but I'm quite confident that everyone experiencing cluster headaches has a knot in their neck, and that the know precedes the headaches. Here's a study backing up my claim, but I encourage everyone here to get a trigger point massage stick, practice relaxation and self-care, and find out if I'm right for themselves. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2631448/

I have been suffering from CH off and on for the past 7 years. I am currently in a phase where I get hit every single night between 7-9 pm, and again at some point during the night(typically around 3 am). They have gotten progressively worse, to the point where I’ll have a slight headache probably 85% of the day. I just started the D3 regimen today, but am looking for anything at this point. I’m becoming desperate, as I have felt my entire mood change throughout the day. I struggle to enjoy time with my kids and wife, because the only thing I think about is when my next CH will hit. Luckily I have been blessed with a wife that is sympathetic and understanding, but it is putting unnecessary stress on her everyday life as well. This is the first time I’ve come across this site, and am hopeful I can find some solutions in this online community. I am absolutely open to any and all suggestions, and if you have any particular questions for me, don’t hesitate to ask. Thanks

I am curious as anyone experiences shadows on the opposite side of their head from the side they get attacks on? I seem to experience shadows on the left side of my head and behind my eye during my cycle more than on the right side in which my attacks occur. Is this normal or something others experience?

Hi my name is Brian and I am new here and have a quick question! I am 28 I have been having cluster headaches since my early 20s and as you all know the pain is unreal. My question though is about the nature of my cycles as I seem to have 2-4 cycles a year lasting only from a single day or two up to 10 days (longest it’s ever been). Is this abnormal as everything I read about cluster headaches suggests cycles are much longer than just a few days, I have all the normal symptoms of the headaches, the triggers associated with the headaches as well but my cycles don’t seem to fall at the exact same time each year maybe once a season or so. If anyone else could shed some light on whether very short cycles are common? also my average cycle is about 5-7 days

Hello fellow Clusterheads! This community has been super helpful in helping me to discover ways to better manage my chronic cluster headaches. Thank you! I've been in a great place with my cluster headaches now for a little over a month- which is huge for me. But, I am noticing I am starting to get more frequent migraines. I do have both, but I really haven't had migraines in years. Has anyone else noticed that a period of decreased/diminished clusters can increase migraine?

Has anyone ever tried antibiotics to treat cluster headaches? So, I thought I had sinus infections when I first started getting CH about 10 years ago. I wasn't diagnosed. I was in my 20's and I think my stepfather would get sinus infections so I came to the conclusion I had them too. I have none of the symptoms of sinus infections however, aside from the splitting headache. I also get migraines so I would confuse my CH for migraines, but the CH lasts for days, even about a week or longer. So I was going to a doctor about 1 every 2 months for these "weird headaches" other than my migraines. They would give me antibiotics and other meds. Unfortunately (and fortunately) they've stopped prescribing me the antibiotics because they didn't want my body to become immune or to form a dependency, BUT after 2 days on antibiotics, my CH is gone, dead, stopped in its tracks. Now, I DO NOT recommend this type of treatment because I believe I'm suffering some of the effects of this homemade "therapy", but has anyone ever heard of this? Tried this? Know why this would work so damn well? Thanks Jaymi

Finally! I have found way out! The medicine which helped! No more Cluster pain! I overcame the season which lasted for one year just in three pains! Sounds like a miracle but it is true. The cluster pains started in 2000. You know how it is. I have tried everything! The course of Prednisolone has damaged my health. Here in Post Soviet country lithium is also popular, I tried this too. Lithium just ruined my health, it limited my movements, I was handicapped and needed crutches, but the pain did not go away. Of course everyone knows the course of Verapamile, which I don’t even know why was invented . In any case for me it did nothing. I have tried breathing oxygen , it did not work. I have tried Sumatriptane and many others but nothing worked. I have given up and decided that this how I will live all my life. But then I heard about one medicine which is prepared only with natural ingredients. Of course I was skeptical at first, but I always try anything that can ease the pain! This are the nasal drops. A friend of mine recommended. I tried it and in one minute the pain was gone. I thought it was a coincidence that the pain was a false alarm. In two days pain came back. I again used 3 drops and in one minute the pain was gone again. I still could not believe. I have tried everything and have become very skeptical. I had to use it third time and it worked again. It’s been more than 2 years now without a pain! I gave this medicine to a friend who also suffers with cluster pains. He had to use it 5 times within a month, and he has not had the pain in seven months. There is a “Cluster Pain Center” in my country, which I am a member of, I know all other registered members who suffer from these pains. I was curious if this medicine really worked or it was a coincidence. I contacted all patients (there are 35 of us in the city). Only 27 replied. I offered all of them this medicine, 18 showed the interest. 12 people out of these 18 used the medicine and in all 12 cases it was successful. In my city there are 14 people including me and my friend who have overcome this pain. It is very simple – you need to use 3-4 drops on the side where you have pain, and the pain goes away in 1 or 2 minutes. I know what a wonderful feeling it is so I wanted to share. I have been on this Facebook Page for 5 years and now I can do something useful!!! I have bought this medicine in certain quantities (just to have some stash, I feel more confident this way). I have an offer – write me in private inbox and I will share it with as many people as possible, free of charge!!!. Try it and you will know that there is a relief. I just want everyone to know that there is a way out! Write me an address in the private inbox and I will send some from my stock, if it will help you as well as 14 people that I know, then there is a cure!!!!! So write me and I will send the medicine to as many people as I can just to try it out. Unfortunately, can’t promise more. I don’t have too much of it myself. I don’t need money – just try! It is made of natural herbs based on spirit. Try, you are not losing anything! If it works you will know there is a cure Email me: soundjadokar@gmail.com

Hello, been a while since I had Cluster attacks, was 2014 . I remember joining a group back then, but soon the attacks stopped, all seemed well, just a fluke, so I have been quite content. Even so, last week, these things came back. Landed at the EMC room twice, before I could get to see the Neurologist, As I did not keep appointments all this time, so now had to be a new patient, ouch! Lesson learned. I had some old sumatritan hanging around in the cabinet, but finally ran that out quickly, 4 pills two days, 100 mg. EMC gave me a 25 mg script, would not give me the 100, the ol bad for the heart thing, second visit, they must have felt okay, and went to 50 mg. Finally got a bottle of 100 mg, 9 pills, all I get for now till like the 20th, insurance won't pay for it till then, Guess I have many many questions, but right now, scared I won't have Suma to fall on, what do I do then, It is the only thing that seems to work, , any suggestions (Even any home remedies?) on how to work around it, I do not see much, found a coupon at the drs office, will still be $66 that I really do not have, but would pay before the electric bill, (Scarey thought there!), Wife says AAA has similar options as well. I try to extend the Suma by not taking it till last moment type deal, but , well just scared at having another EMC room visit as well. Glad to have found this board tonight, got alot of questions, and just wanted to say hello , so see everyone on the other side!

Greetings fellow clusterheads. Very grateful for websites and forums like these. Around the age of 12 I started getting the most brutal headaches I had ever endured. At the time we had no idea what they were. As most of you went through as well, I had all the tests, scans, sinus meds, the works. Eventually, on my own after the age of 18, I figured out what they were, and discovered that there was no cure lol. What a kick in the balls that was. Anyway, I'm now 35, in the middle of a cycle, after going 4 years since my last one. The older I get and the more I progress career-wise, the more pissed off I get at these headaches. I'm trying more things than I ever have before, and more consistently, in an effort to find something that works. In past cycles I would be so damn depressed that I would just wait until the next headache, at which time I would alternate between holding a scalding hot heating pad to my head, and taking hot showers for 3-4 hours until the pain began to subside. This time around, as soon as I got the first one, I went to see my doc, and informed all of my different clients (self-employed) that if I was to get a headache, I will be unable to function and work. For the first time ever I found something that worked as an abortive (so far, knock on wood). Imitrex injections. In the past I had taken tablets, but never the injections. A week and a half ago my doc put me on Prednisone hoping to knock the cycle out. 80mg the first day, then 60 for two days, then 40, 20, and 10. No go. As soon as I got to the last day of 10mg, I got a beast of a headache. As of yesterday, I'm now on Verapamil, started with 80mg yesterday, and 160mg today and for the next few days. Plus taking Magnesium supplements, still small though, only 250mg today. The new meds have fucked with my usual cycle, so I'm curious what everyone's thoughts are... In past cycles, I would get one incredibly bad headache in the morning every couple days. It would last 3-4 hours, then I would be sore the rest of the day, and then nothing the next day. The last few days have been as follows... Saturday early morning was the brutal headache following the Prednisone. I was headache free then until Monday early morning when I got one and used the imitrex injection for the first time. About 8 hours later when I woke up I had a milder version of one that I knocked out with a heating pad in a couple hours. That day (yesterday) I began the Verapamil. Today early morning I got another one, thought it seemed slightly weaker, and used the imitrex again to knock it out. Now this evening, earlier than usual, around 8, I got one that seemed even weaker than the one I got early this morning. It was still bad, like someone burrowing out my brain with a spoon, but not nearly as bad as the really bad ones. I used a heating pad, hot showers, and aspirin with codeine, and knocked it out in a couple hours. Today was the day I took 160mg of Varap. My question is... could the cycle be coming to an end already due to the Varap.? Sorry to sound anxious, these things are just a fucking living hell. I'm a musician, so I've basically had to hire subs to be 'on call' in case I get a headache. I anticipate another one a couple hours after falling asleep tonight, and then I will see how tomorrow plays out. I will be on 160mg of Varap. for the next few days. Would you advise me to jump up the dosage? Or see if this one works? And again to my question, can the weakening of headaches be a signal of the end of a cycle? In past cycles I do recall that was how it occurred, but it has varied every time, and I think honestly I try to block out the memories of these fucking things. Thanx for listening to my story! And my heart goes out to all of you sufferers.