Leaderboard

Hi Doc J...glad ya found us.. ...read this site and others like your life depended on it...CH aint gonna kill you but that's the attitude ya gotta have.... because we are, in many cases, our own best perhaps only advocate... ...don't assume just any neuro 'knows" CH...many don't...best to find a headache specialist... ...if the Zomiltriptan is oral you're gonna be disappointed....too slow....an injectable or nasal form works much quicker with your goal to use the least amount possible since rebounds and side effects can be considerable. Imitrex comes in 4 or 6 mg statdoses....many find they can get by with only 2 mg (greatly limiting the side effects and rebounds) by way of hacking the dose pen...or better yet , by obtaining in vials and injecting with insulin needles only the amount needed. In my case, Zomig NS 5 mg provided near 100% relief as abort of last resort... with no side effects, rebounds and an 18 hr CH free window....YMMV ...OXYGEN OXYGEN OXYGEN.....saved my sanity, perhaps my life...no side effects, relatively inexpensive, easy to use, way more portable than you may hear. You'll need a non-rebreather mask, 15-25 lpm flow (at least to start...adjust with experience)....and a technique that works for you (hyperventilate, breath and hold, variation of the 2, etc). ...caffeine in the form of energy drinks or VERY strong coffee is an absolute essential tool alone or in conjunction with O2....I have found that using only as an abortive (preventive if you know your cycle timing well) and avoiding at all other times makes it far more effective as the body has not developed a tolerance. various forms of energy drinks available ...you are looking for minimum 100 mg caffeine and 1000 mg taurine per dose (be sure to discuss with neuro, some don't like taurine). Incredible amounts of sugar is daunting so sugar free or the 2 oz 5- hr energy shots preferable...tho low blood sugar was a trigger for me. Taken cold and fast worked best....almost like you are attempting a brain freeze (irony here is that brain freeze is one of the few pains non clusterheads can begin to relate to CH).. ...the vitamin D3 regimen has been successful for many clusterheads...definitely worth a try as safe, inexpensive and beneficial beyond CH.... ...you are, of course, on an alternative medicine site that exists because of the limited success of traditional meds...well worth consideration...for many the only thing that ever worked... ...a headache diary is very helpful in dialing in what your triggers are...and there are many...from smells, to foods, to barometric pressure changes, to changes in routine....and i've seen frequent comments on seeming connection with sleep disturbances (so effectively treating that one may help with your CH).... ....if you got the right attitude, the proper tools and a plan.... the beast is manageable.... ...interesting note on MS...I've been checked multiple times, apparently there are some symptoms shared with CH... regards jonathan pardon my repetitiveness....no intent to step on toes....typed before I saw all the replies and i don't have the energy to edit...

Dr J, (hey, do you play basketball?) I ++ what others have said above. 100 percent high flow Oxygen is a life saver. You have to get on it before the attack ramps up. If you feel one coming, go ahead and hit the O2. The earlier you get on it, the better it works. Also, my go to are energy drinks. For us CH'ers, for some reason I think everyone I've spoken with can drink them anytime at night and still fall asleep. When I get a night attack, I hit the O2, and carry the tank to the fridge and get an energy drink. Slam half of it. Back to the O2 and sit down (Rocking for some reason seems to psychologically help). Hit the attack quickly with those two and I rarely ever have an attack last longer than 10 minutes. If I don't get on the O2 early, it doesn't do any good. I can huff for an hour and nothing but pain. Like CHF said above, checkout the list of common triggers. I've found I can reduce my attacks to less than half if I stay away from any trigger foods. My biggest are chocolate, alcohol, fermented cheese (the fake cheese whiz stuff is fine). Cheers, J

As is said here, Dr.J', welcome to the community and sorry you have to be here. I don't think anyone can really answer your question about what your future cycles might be like, except to say that you will learn to manage them so that they are far less awful than what you are experiencing right now, and it's not impossible that you will find a way to eliminate some or all of those cycles. I think this post and the links within it will provide you with a pretty good tour of treatment possibilities and options, and some things (like triggers) to be aware of: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/. I don't remember whether that post mentions Emgality, the most recent pharmaceutical treatment for CH. Our anecdotal reports here are that it works okay (or well) for some people, but is not very effective for others (we're a limited sample here--people who have found success with Emgality are not really likely to show up here, unless they were already here). Some neurologists are pretty good with CH; most are not. So be as prepared as you can when you have an appointment. In particular, be prepared to insist on oxygen, which is the #1 lifesaver for people with CH. The vitamin D3 regimen and busting are also powerful tools. In that post I linked to, there are several suggestions for things you can do right now to reduce the severity of your attacks. If it will be a while before you can see a doctor and thereby get access to medical oxygen, you might consider setting up your own oxygen system using welding O2, which is used by many people with CH. Finally, note the search bar at the top right of the page. That will help you look into any topic that interests you.

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 !

Hey Dr J, Welcome to the forum, so sorry you have to be here. Looks like you've already received some good advice. I'd also recommend you do as much research as you can, as mentioned above, most doctors (even specialist neurologists) are pretty clueless when it comes to CH. They just don't know what to do or their data is out of date. Ouchuk.org is a good sight for background information on the different types of primary headaches, and explains them well along with some standard treatment options. Some things work really well for some types of headaches (e.g. triptans for migraines and indomethacin for SUNCT). Triptans don't normally do anything for clusters, in my experience. Although I think some injectable forms of triptans can be beneficial. Caffeine is also helpful to abort an attack. Strong coffee or an energy drink will sometimes shorten attacks. Mox

Hi Dr. Julie and welcome ! I personally see 2 paths to travel; pharmaceutical and non-pharmaceutical but many of us mix whatever helps. I think the best way to choose your own is to read experiences of others and listen your hunch. It will get hell of a lot better from now on ✌️

This action is supported by all admin personnel. Each of us have responded numerous times to pm's and 'alerts' from this person. The fact that less than a handful of members have been banned in over a decade shows that we strive to help people. That is our only agenda. Please keep in mind that this is a safe place for people to discuss and work on pain relief and having a 'normal' life. We all have Ch. Every Admin strives to provide a safe place for our friends who suffer the same disease or similar. We are walking the same path as our members. Family clashes can and do occur on occasion. They are generally short lived and everyone moves forward, closer to the goal post, rather than creating divisiveness and discord in the group for personal reasons. The discord is not helpful nor does it benefit anyone. Sad as it is, it is necessary.

...i just hafta say...as an x/food scientist....that this is the most appropriately named food extent...it looks, smells, tastes exactly as named... ...back to your regular channel...pardon the crude interruption.....

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 like being oblivious about such things and do not envy such a duty. The moderators have earned my trust and I trust their judgement. Your work is appreciated.