ThatHurtsMyHead

I had thought about moving this thread to the closed board (off the public - general board), but figured since it's just public info we're chatting about, what's the harm leaving here. I'll leave this thread in the general as long as no posts about personal use etc. Cheers, J

The website looks well put together till you get to the 125mg of psilo on the label. That screams at me, they don't know what they're doing.. Sorta scary that someone might think it's OK to take 125mg of psilo. Just did a quick search. I guess things in CA have changed since I last read up. Psilo in CA is legal for medical use. While it's illegal to sell, posses etc, wiki says Canadian police don't enforce it. I guess us CH'ers in CA have much better options to get busting supplies than here in the US. Is the CA-US border still closed? I haven't seen a snowbird CA license plate on the beach here in FL this year at all. Cheers, J

A-Z, Glad you're asking for help. It can be challenging, I know. I'd highly recommend seeing your doctor. There are several antidepressants that even at low doses can really help your symptoms. I took a generic version of zoloft for close to a year recently. I had some situational challenges going on with a lawsuit against a contractor that had damaged my home. I'm not familiar with most of the drugs listed in your first post. I'd wonder if something you've taken recently, Zomig etc, might have created a serotonin imbalance? Please, do go see your doctor. (I'm in a bit of withdrawn place myself, so can relate). I can vouch that the zoloft (I think 50mg a day), made a difference enough that I was able to function much better w/o distracting thoughts. J

A-Z, I've tried cannabis a few times. Every time, I've had an almost panic reaction. I think my body is wired differently than most other peoples. It didn't make me feel good at all, just wayyyyy nervous and all I could think about was never doing it again. It seems odd that the feeling occurred after several weeks for you. I'm no doctor, but to me it would seem like it's not related to the cannabis. Cheers, J

Mastermerls, Sorry, but I got a chuckle reading that you cover your eyes while working on the PC and watching TV. ha ha. I'm sure you meant something else. I worked with some programmers years ago, that I swear they did the same thing while programming. When their code worked, there was no way of figuring out why... ha ha.. I'm glad you're getting some pain free time, but I'd be very skeptical of any type of glasses stopping our CH. From research our condition is related to an inflammation response. Hence the reason O2, Prednisone etc do work. Brain scans have shown the Hypothalamus in our brains is all messed up during an attack. That our brain is actually triggering the episode. Also, the hypothalamus controls our circadian rhythm (when to wake, sleep, eat, sex etc). That's the reason our attacks are typically very regular (though as you've pointed out, food and smells, among other things can be a trigger also). Keep us posted how you're doing, but don't rule out that your cycle may have just stopped at the same time as well. 20 years ago I tried verapamil and my attacks stopped. I thought it was a miracle cure. The next year my attacks started I went back on verapamil. Nope. Didn't to anything. I figured out that the first time my cycle must have just ended at the same time I started the verapamil. Cheers. J

Yep. While it's been known to most. I'm sure the medical community (Doctors...) are light years behind in getting the memo. Right along with writing O2 scripts. Cheers, J

Snowflake, Stay strong. I know those are only words, but you're in closer company here than you might realize. PFW, J

GBeth, I sympathize with your situation. In some ways it seems similar to having CH. I would ask that you use caution in any decision you make on treatment. I don't know if it's fact or fiction, but when I did my research on self treatment many years ago. I read a good bit about psychedelics triggering deeper psychological issues in people that already had them, or had latent issues. If you do seek self treatment please make sure you have good set and setting: https://en.wikipedia.org/wiki/Set_and_setting Set and Setting is important for not only the experience, but for the after experience as well. A good sitter should not drink or take anything during a dose, and should also have a very good understanding of Set and Setting, what they should do and some things they should not do while being a sitter. A peaceful listener in my opinion is the best sitter. I'm certainly no doctor, nor have any experience with the type of challenge you're experiencing, but wish you luck, and sending you positive thoughts for your recovery. Love all, J

Pebbles, Interesting info, and thanks for that other post report. I try to get to them as soon as I can, when I see any reports. Cheers, J

Kat, Any neurologist that would refuse to prescribe O2 is either an idiot, inept, incompetent or (D) all of the above. Fire that one, quick... Great news on your primary doc. I'm sorta brainstorming here, but wonder if we should make a list of doctors not to see for those of us with CH. There seems to be a lot more incompetence in the doctor realm than competence. Just thinking out loud. Cheers, J

meme, Sorry they're back, but glad to hear you already have a path to get pain free again. Do you have O2? Cheers on your dose today! PFW, J

Hi jimmy's, Glad to hear your CH is mild. I don't think wellbutrin helps our CH, but I think quite a few of us take it for one thing or another. Tampa / St Pete here, Cheers, J

Welcome its okay, As many have said, glad you found us, sorry you have to be here. Those other CH'ers and supporters here are great people. Oh have you tried aspirin and laying down yet? (ok, kidding.. ) There are several Aussies that check in here, try a search and see who you can tag (if you need help reaching out, drop me a note). O2 is definitely the best abortive out there. No side effects and it's very cheap (and mostly easy) to obtain. Cheers, J

Hosie, Feel free to introduce yourself. There are lots of great people here. Try grazing through the posts, it's easy to get to know other CH'ers that check in here. Cheers, J

WOW, great Info... The word has gotten out and picking up momentum!! We can be pain free. Just gotta deal with bureaucracy first... J

BustOrNothing, Welcome to the family. Your intro was awesome (well as awesome as anything about CH can be anyway). Yea, I don't think anyone gets us accept another CH'er. Well there are a few here and there. CHFather supports his daughter with CH and has been around here helping others for quite a few years. He's a wealth of information on CH (and a really great person as well). Feel free to poke around and ask any questions on busting. The folder Theory and Implementation has lots of info on busting. As well as the ClusterBuster Files folder. Cheers! J

Updated link: https://clusterbusters.org/resource/cluster-resources/ Cheers, J

Here you go. https://clusterbusters.org/resource/cluster-resources/ I'll update the location in the other sticky thread. Thanks for bringing to our attention. Cheers, J

Hmm, Our Dr list seems to be lost. Most doctors are lost when it comes to CH, and now they're really lost. I'll try to find it and repost. A mandatory upgrade a few months ago caused a lot of our links to get moved. J

FT makes a good point. When I had insurance years ago, I paid a copay of $15 per E tank. When I lost my insurance the Oxygen company charged me $8.10 per exchange... Had I known not having insurance was cheaper, I wouldn't have fooled with insurance to start with. J

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

dehabel, I think the most knowledgeable person around with the D3 regimen is Batch. I'll drop him a note and see if he can check in here to answer your questions. He's a wealth of knowledge on vitamins. Cheers, J

dehabel, Sadly, your doctor is clearly in the dark on dosage. At the CB conference last year there was a really good presentation on Emgality. It was stated and backed up by multiple people in the crowd (that were in the Emgality trial). The standard migraine dose does nothing for those of us with CH. If I recall correctly, I think it also only helps with episodic. That Chronics it doesn't work at all. (I'm sure someone will chime in here and correct me if that's backwards). Sometimes doctors are clueless and sadly some have an ego that prevents them from getting the education to help their patients. IMHO, I'd fire him and get another doc (if you can). I concur with your decision on dopomax also. (as the CH community commonly call it). I know it does help some people, but at what cost? I couldn't work if I didn't have my wits every moment of the day. Keep us posted, J

fillzeros, You're correct. It's not something I ever look forward to. Thankfully it's a very rare necessity to ban someone. I know everyone of us with CH have days our fuse is short. I try to temper any action with the understanding that I don't know what that person is going through right now. They might just be having a moment. So I try to assume the person will come around if approached from a different angle. The vast majority of the time those of us here on the board can have an argument, but all the while we know the person at the other end is a friend. At the end of the day I want to see that person at a conference and give them a hug, even if we disagree on something. When attacks go from the subject matter to personal, it interferes with the ability to reconcile. Cheers All, J

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