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One of the projects is relieving suffering involved in cluster headaches https://www.gofundme.com/f/help-opis-prevent-intense-suffering I was not sure are GoFundMe links allowed here, if not this post can be edited / removed

Location map (lincare.com) UTAH shops ...although mixed reviews for Lincare in the CH community ... they are ubiquitous and it all depends on the shop mgr you encounter anyway, no matter the supplier....overall they served me well (especially the techs and drivers)... .....even if you don't have insurance or ins balks....with a prescription in hand, from a headache specialist doc (or a PCP who is willing to learn/listen),..... sit down with the O2 shop manager with an offer to self pay. in some cases this is even cheaper than insurance. cheaper yet, a fallback plan of welding O2....just don't tell 'em ya gonna breath it.... ...if you will be travelling, Lincare has a "travel program" where you can arrange O2 at your destination...i successfully used this for OK, CA, NV, WA... ...dunno your history, but don't let anyone push a concentrator on you.... best j

Aw man, that really sucks. I've had cluster headaches for 8ish years now. My cycle can be pretty hellish. For 6 months or so (starting around March) I get 4-5 cluster headaches a night that are long lasting (30 min to 3 hours) and little sprinkles of them that last throughout the day. These last only a few minutes, but I feel like I never get a break. Fortunately for another six months I usually get a short one (10 min) in the morning, and I am pain free for the rest of the day! Aw man I really do feel your pain, and this site is pretty great. Just to let you know, me and the others on this site really understand your pain, and you aren't alone. So keep being strong and pushing through with it! You can do it! btw I'm 15 years old, so this might not mean that much from someone so young, but I believe in you!

I feel ya Mox. Similar shit going down in my world right now. Hang in there.

I’m surprised I’m seeing so many negative reactions to the melatonin. I’ve been taking 5mg every night for a year now, I wonder if that would explain my daily headaches? Maybe tonight I will stick to Benadryl because my allergies have been out of control

All, It's with a heavy heart I have to do something today that I've only had to do once before. Ban someone from the board. This action was not taken lightly. I'll leave details out, but nearly every personality conflict on the board for the last year or so all involve one poster. I've asked politely. The mods have asked politely. This poster has received warnings and yet continues to post inflammatory remarks. There seems to only be one action left so that members here can focus on helping one another, that's the reason we're here and the reason the board is here. To help, not hurt. We all have enough hurt in our lives with CH already. Love to all, J

I have no idea what this is about but I feel so sorry for everyone involved. I feel sorry for us. I am a naive human being who wants to believe good in people and honesty is essential in everything I do in life. For the longest time I thought that having a cluster headache somehow shelters one from being or becoming dishonest, or manipulative and such. It does not. In my eyes clusterheads are more compassionate and understanding than an average joes but maybe due to our extreme, violent, mercyless and for some very prolonged suffering we have our exceptions to confirm the rule. C'mon. We are the underdogs already, big time, with all that we are up against in life. Be kind, to each other, to yourself. Respect to admins. Not an easy task you have to carry out year in year out. PF wishes !

Hi Folks, when I first got diagnosed a decade ago I got a leaflet from my then Neuro stating a couple of "simple" no-no´s for a CH newbie. (Triggers etc). One thing that was mentioned on there (and I have read it here as well) was to not practice daytime sleeping / napping as this can act as a trigger. The past cycles I sticked to this and did not sleep during the day. Since the current cycle is so bad with not a single day of relief from the severe nightly attacks since weeks and weeks, I just have crossed the line that I can not endure my day anymore as is. I am so dead tired. Like not just tired, absolutely non functional horrible tired sometimes seeing hallucinations already. Coffee and Energy drinks do trigger this cycle as well (never did before) so I cant push myself artificially either. Now, I could not take it anymore and had a 1hr nap some days ago at around 3pm-4pm. Yes, it seems it is a trigger for me as I was welcomed after waking up with a very bad attack. My question is - I am honestly in the situation to rather take the hit / pain and abort it then having to carry on with this tiredness. Is there any more detailed research around if a daytime nap is making the whole situation even worse, lengthening the cycle etc ? Yes, daytime sleep is - at least what the media tells us - generally not that good if exceeds the power napping timeframe of like 20 minutes or so, but I am curious on your view if I mess up things more by rather taking the hit and have a bit of rest at least, or if it does not matter and there is no worsening affect other then an additional daytime hit. Yes, I understand the circadian rhythm / Hypothalamus is once more interrupted with a sleep during the day but its f***cked anyways so maybe it doesn't matter anymore at this stage. Babies / Toddlers / older people also nap, so it can´t be universally "bad" for our internal clock.

Hi all, First off, I’d like to say I am so grateful to have a place like this that contains so much info pertaining to cluster headaches. The wealth of knowledge and others’ experiences are priceless and have gotten me through some of the most trying times of my life. I am so sorry that anyone would have to go through this pain, but it helps to know that I am not alone in this struggle. Finding this site some years ago was a godsend. My story, oddly enough, began around the age of 15/16 when I experienced my first EXCRUTIATING (which I feel is putting it mildly) headache. It was the most intense pain I’ve felt in my life, always on the right side of my head, behind my eye/temple/upper jaw region, BUT at the time it would last only a couple of minutes. This went on for about a week or two. I saw my family’s primary care physician who brushed it off as a “fluke.” It wasn’t until I was 21 when I was getting a full cycle of cluster headaches, which at the time I did not have a diagnosis for. I have been to urgent care centers, ERs, general neurologists, and it wasn’t until my last cycle (about 2 years ago) that I went to a headache specialist neurologist who diagnosed me officially with cluster headaches. My headaches were so bad at the time that even though I had an appointment with him in two days, I felt I NEEDED to go to the ER to make sure nothing was wrong, get scans of my head and such. When I finally had my appointment with the headache specialist, he told me that everything that I had been prescribed up until then by doctors, who had no idea about cluster headaches, was garbage. Extra strength acetaminophen, opiates, oral imitrex, etc... he prescribed me nasal spray Sumatriptan and gave me advice on breathing 100% O2 to abort an attack. I am now 27 and my cycles have come almost exactly every 2 years. They start around August and last about a month and a half to two. The headache typically lasts anywhere from 45min-3hrs(at most). The first inkling that I get of a cycle about to begin is a slight pain, almost like a squeezing in my upper teeth/jaw on the right side. It starts off as slight pain, which I now understand to be shadows. It progresses to a full blown cycle, where at the peak I get up to 3-4 headaches in a day. Totally debilitating. 11/10 pain. Feels like my eye is being pressurized to the point of it going to pop. Stabbing pains behind my eye. Feels like so much pressure my skull wants to burst open, so much so that I can feel it in my ear canal. I get the droopy right eyelid, eye gets very red, teary and burns, and stuffy nostril on headache side. I cannot sit still. I have to pace, rub my head, pull my hair. I even told the headache specialist that I’d rather die than experience this forever, which he said is very common with cluster headache sufferers. That was before I knew that this was a cyclical ordeal. The only thing that gets me through these times is the glimmer of hope that this cycle may end, and I can potentially get some headache-free remission time. From my experience these are my known and most common triggers: Alcohol (which I haven’t drank in about a year), red meat (also have been vegetarian for about a year so I don’t eat meat anymore), heavily seasoned foods, any type of smoke (from blowing out a candle, foods cooking on a stove/grill, second hand cigarettes, Mary J), I can toke a little herb off cycle but on cycle it is 100% a trigger for me (also a good test to see if I am still in cycle as it is ending), chocolate, msg (mainly from Chinese takeout), extreme changes in barometric pressure, artificial sweeteners, abnormal sleep schedules. My “go to’s” for aborting a headache include: 100% O2 first and foremost. If I am not at home I do not have a travel tank of oxygen, so at the first feeling that I will get a headache is a BC powder (845mg aspirin, 65mg caffeine) with a coke, which usually, depending on how early I catch it, can keep the pain from reaching a 10 (mostly in the 6-8 range), though sometimes it still gets to a 10 even with the BC. I have nasal spray Sumatriptan, but from what I read, it tends to extend cycles / cause more headaches, so I have yet to use it. I’d rather succumb to the beast than extend my misery by more than need be. Currently I am in a cycle (about 2 weeks and some change in). This one has come earlier than my previous cycles, which are around August typically, so it’s a bit odd. Also, the 3-a-days headaches started after a week of being on this cycle, which is also odd, because the most intense part of my cycle normally starts about 3 to 4 weeks in and is usually a good sign that I have reached the peak and will start heading toward the end of the cycle. As usual, I came back to this forum for motivation to make it through these dark times by just reading through other people’s experiences. Makes me feel less alone because, although my family and friends realize I am miserable, they can never understand the way that anyone here does. I’ve recently read about “busting” since I got an account here. I have been doing my research and may try busting or getting on the D3 in the near future. Hats off to you guys who spent the time and energy in to compiling this wealth of knowledge for everyone. You guys are true heroes. I’m not too sure why I’m sharing this. Maybe because I’ve found some sort of comfort reading through familiar experiences and wanted to give someone else something to read to distract from our ugly reality. I’ve heard that people tend to reach out in times of hardship because there is some solace having someone to share your misery with. I know I have it “easy” compared to some of you with chronic clusters or more frequent cycles / shorter periods of remission. I have the greatest sympathy for anyone experiencing this in any capacity. Much love to you guys. Here’s to wishing for headache free futures for everyone.