ThatHurtsMyHead

JohnStopPain, If you can get a script for O2, you might be able to negotiate a cash price for O2 with a local supplier. A few years back I had to buy my own E tanks. Cash price was only $8.10 for each tank fill. PFW, J

It's always good to bring new information though Otherwise we'd all be sticking ourselves with imitrex till our hearts exploded by now. J

I just did a quick read up on ajovy. Not impressed. For migraine studies, the placebo had a 75% reduction of headache days as compared to this drug. Basically for migraine it was only 25% better than a placebo. Zero information for CH. Given it has such a poor impact on migraine, I wouldn't expect it to have any positive effect on CH. Just my opinion. J

Have you tried energy drinks yet? Most people find they work great to soften attacks. I usually slam half a can of monster or redbull at the first sign of an attack. It seems the oxygen works a lot better if I do that just before getting on the O2. Also, I've never had a hard time falling back asleep at night either (only half an energy drink though). When the post hit exhaustion kicks in I'm right asleep after the attack. PFW, J

dmlonghorn, Data shows there are less people with CH the closer to the equator we live. As far as episodic cycles. I think that's a complete mystery. I was episodic a long time ago and cycles would start at most anytime. Sometimes they'd skip a year, sometimes I'd have 2 in a year. I think its most common for episodics to only get one cycle a year though. PFW, J

Ok, the condition I was trying to think of just popped in.. ha ha.. Chronic paroxysmal hemicrania - It's almost exactly like CH, but affects women more than men (supposedly anyway). It also has attack duration from a few to 30 minutes. One BIG difference between CH and CPH, is it us usually treatable with indomethacin. Indomethacin doesn't work on CH, so it's a good test doctors use to distinguish which condition a patient has. Cheers, J

Nicole, I'm certainly no doctor so take any info I might give as just a vague opinion. The location and description of your attacks sound very much like CH accept for one aspect. CH attacks normally last from 1 to 3 hours. I think you posted yours last from a few to 20 minutes. There are several other head conditions that are very similar to CH and in the same family (trigeminal autonomic cephalalgia), but have shorter duration of attack pain. SUNCT is the first one that comes to mind that has shorter duration. They are normally 1 to 6 minutes and have similar treatment as CH. There are a few others, that actually have better treatment options than CH (though sorry, my memory is bad sometimes and I don't recall the names off the top of my head). Try researching trigeminal autonomic cephalalgia, as that's the primary title for most flavors of CH type attacks. PFW, J

Tracy, ++ spiny's post. Our alternative meds are actually much safer than society has told us. To make it easy it's best to have a good Set and Setting. Have a friend, someone you feel comfortable with hang out with you. It'll help make the experience much more relaxing. Please post questions in the "Theory and Implementation" folder. There's lots of very knowledgeable people around that can help answer most any question you might have. Cheers, J

Yann, Sorry to hear of your rough time. Have you tried magic mushrooms, LSA or LSD? There are thousands (or likely more by now) that have found better relief from indole ring hallucinogens than anything the doctor can prescribe. I agree with your thinking about not taking medicines that can cause more damage than help. At low doses hallucinogens are very safe and very effective at turning our CH off. J

Postdrome - I had to look that up. When my attacks stop (always after 100 percent O2), I'm wiped out. Completely exhausted, but no headache, or pain of any kind. I sometimes have a slight head buzz (from the O2). Even after slamming an energy drink, I usually pass out (or fall asleep) within 3 minutes of my attack completely stopping. J

The first year I took it, it seemed to work (or my cycle was stopping anyway, I'll never know). The next year, it didn't work and gave me PVC's (Premature Ventricle Contractions - Very scary heart palpitations), that took close to 2 years to completely go away after stopping the verapamil. Never touch that stuff again. After the heart palpitations went away, I went from episodic to chronic. J

3800sc, Yep, those are medical "E" tanks. Looks like three of them have the seals and should be full if they are. You could use the 3, but sadly you'd need a prescription to get them filled. Also it's very likely those are owned by a medical supply company. Most E tanks are only loaned out for use and could possibly be confiscated if you tried to get them filled by a medical supply company. (not positive, but I'd say pretty likely). (I had a med company tell me they'd confiscate two I had from another company if I tried to get them filled). I just did some quick research on an oxygen supplier (airgas). Looks like there's some pretty good O2 prices. $37 to fill a 200 cubic foot tank (which is really BIG). They don't show the cylinder purchase price on their website, but the last time I bought one about that size it was about $175. Cheers, J Ah, I see you just posted a response to CHF. I'll go ahead and post my response, but it's a bit out of date now. J

All, The message board upgrade is complete. Please, Please, Please post any issues you encounter here. Thank you! J

Test post... J

Jon, If I remember right, I think the system only sends notifications once a day. I'll look into it. J

Friends, Wed 27 June the message board will be down for a few hours during the day for software upgrades. We'll get it back up as soon as possible after the update and testing. Hopefully this will resolve the signup issues some have experienced. Cheers, J

All, Just wanting to keep everyone in the loop that we have two things with the message board going on. 1) Currently new registrations aren't working. Anyone that's attempted to register (for access to the busting content) isn't able, due to a security flaw in the system. 2) To address the registration issue, we're scheduling an upgrade to the latest message board software version. We anticipate the upgrade to be sometime between 25 and 29 June. I'll post a specific date and time once it's been set. Please feel free to post any questions or concerns. Cheers, J

CHF, Sorry, it took me a little while to figure it out. I bumped the storage limit up. Try now. Cheers, J

Douglas, What level of "trip" effects are you getting? I'm curious if you're getting a strong enough dose? Also what other meds are you taking? Some meds (especially imitrex) block the help mm gives us. Please post details and I'm sure someone will come along that can provide some better coaching on using mm more effectively. PFW, J

All, I'm blushing as I read the replies. Thanks everyone. Love to all! J

All, Massive Apology to everyone. I made a security change a few days ago in response to someone that was spamming board members. When I did that, I didn't set some security setting correctly. So, so sorry to everyone. You're welcome to start the wet noodle floggings. Everyone should be fixed, now. J

Spiny, Do you have a camera in my office? I've already done something similar, and will send you the details. Cheers J

All, I want to start my post with an apology to everyone. It was brought to my attention that a spammer sent messages to some users of the board. The content of the spam was explicitly against Cluster Busters ethics. If you received a message with links to go to web addresses to purchase anything, please DO NOT click any of the links. Just delete the message. I believe I removed them already, but might have not been successful in removing all of them. The user has also been banned from the board. Reluctantly I've had to make a change to the messaging system in response to this persons activity. To reduce the likelihood that a spammer would take advantage of the board messaging system again I've made some changes. Going forward any users in the Member group will only be allowed to start 3 new messages to other users per day. You should be able to respond to unlimited conversations (same as it is now). Also I've reduced the maximum number of recipients per message to 3. This should allow users to continue to send new (and respond to) messages, but also provide a bottleneck to potential spammers that would attempt to abuse the system. Please feel free to provide any feedback as I really appreciate hearing from you guys and gals on how any changes affect you. If you think this is too restrictive on the messaging I'm ok loosening it up if you use more messages or regularly send to more than three users in each message. Also, thanks to the mods for the quick action as well as several users for reporting the abuser. It's much appreciated! You guys and gals ROCK!! Cheers! J

Sending you Love and positive vibes MG. Wish I could send more. Sometimes the best things in our lives come right after the toughest. PFW, J

(I'm pasting my reply from the issue report form) MG, I haven't used this reporting forum before. (hope I'm doing this right, ha ha).. Someone reported something similar a while back. It ended up being a special character being pasted in. Some special characters are hidden (like VBCRLF in code is a carriage return and line feed). I'd bet there's something hidden (html most likely) in what you're trying to paste. Also could be formatting, that isn't compatible with the forum input box. J