Jeff_007

Ok, I was kind of hesitant to write this until I did some more research and testing with it, but here goes. I'm sure everyone of us has been diagnosed with TMJD. Wait!!! Before you right me off.. Please here me out... When I started getting my CH's back this time, I went to my Chiro to ease my stress and pain in my shoulder and neck. This does not help my HA's one bit. But, I started talking to him about my jaw, as I too have the same issues as you guys. I noticed that I wake up in the middle of the night with a hit coming and my jaw is tight and clenching. I've had all of the bite guards and what not, but that just saves your teeth. It doesnt stop the muscles from clenching. On Sunday I had 4 HA's during the day and woke up about 3 times that night and had to use the oxy to abort. On Monday my Chiro showed me some TMJ exercises to relieve the stress in my jaw. But here is the important part, he also put on a glove and showed me this gland in the back of my mouth (Parotid Gland) to press on to relieve the stress too. If you open your mouth and on each side where your top and bottom jaw meet in the back is a rubber band like gland. You apply pressure on this for 10-20 seconds or however long you can stand. It will be sore/tender. Run your finger up and down it. He did this and I'm going to tell you it hurt like hell. My eyes teared up, but when he was done I couldnt believe what I felt. You know that feeling you get when you come out of a hit sometimes like the pain just drained down the back of your skull and down your neck? Thats what I felt!! My head was much lighter and also I could finally breath out of might right nostril again, which is the side my clusters are on. Now, since he did that, I have been constantly doing these TMJ exercises to loosen up my jaw. That was monday morning. I had 1 HA monday at 7PM. YES 1 !!! AND I slept through the night that night without a HA!!! I couldnt believe it!! So when I woke up, again my jaw was tight from clenching that night. I immediately started the TMJ exercises all throughout the day. NOT ONE HA ON TUES until 9PM!!! AGAIN SLEPT ALL NIGHT LAST NIGHT!!! I started reading up on TMJ disorder and there is a link to the Trigeminal nerve big time! I believe these exercises are helping me relieve stress on my jaw that may be putting pressure on my nerve to send signals back to my brain or something like that. I didnt want to jump the gun on this and post anything yet, but now that you mention it Jay, I couldnt resist. I couldnt be coming to the end of my cycle as I had 7 HA's on Sunday and 1 on Monday?? That doesnt sound like much of a tapering off to me. Here are some links to some exercises if you want to try them and who knows it might help you or it might not...One thing that I noticed while reading these exercises is that one of them has you squeeze your head towards your temple area. What do clusterheads do to relieve some pain??!! Squeeze our heads!! This may be why it helps because we are relieving that stess in our jaw just a little bit. Also here is something I found about TMJ and the Trigeminal nerve, but nothing related to clusters specifically. http://www.ehow.com/how_2352238_cure-tmj-jaw-exercises.html http://www.ihateheadaches.org/tmj-andi-trigeminal-nerve.html Anyways, this could all just be coincidence for me??! NOT sure, but from the effects that I'm getting I'm pretty convinced that this is helping to break my cycle. I know my body more than anyone and the nerve in my head and face is giving me good signs rather than bad. Hope this helps.. Jeff

Hey everyone, Well, Got a package from great person to get me started on the O2 and was hooked up by Friday night. This is my first time on it and all I can say is WOW! If anyone is not using oxygen GET IT QUICKLY! Its working great for me. I'm killing hits in 5 minutes and they are staying at very low levels. I actually have my life back somewhat. My kids both have noticed it too! Thank you to everyone for guiding me through the process to get this hooked up! On another note, I'm still detoxing from Topamax and the hits are coming more frequently. But I have the oxy. I'm planning to be done taking them by the end of the week and then another 3-5 days to get it out of my system. Then Zero our begins. I will start another thread to document my shroom bust. Jeff 007

Ditto to everyone!! When I found this place and discovered that I was not alone was like picking myself up off of the bottem of the deepest darkest hole to the middle of the earth and starting to climb back out. It gave me the strength to carry on and fight!! I thank you Bob..and that goes for all of you!! I could just cry right now dammit!!

I'm looking into a place by me that does both medical and welders O2 called Airgas. My only worry is the regulator. I read through everything but does the one with the hex nut fit on the welders tank? I just talked to Carole (CB member) and she had this delema last night where her regulator wouldnt fit her new welders tank. BTW. Just got hit at work at 1:20....Thank GOD for red bull. It kept it down to about a 4 and only 10 minutes. It came quick and strong and I think it would have been a big one.

Ok. While detoxing (Slowly since its Topamax) I would think that I would start to get hit a bit worse. They are not as intense or long, but I've been using ice packs, cold air, and red bull to try to abort for now so that could be it. But I did sleep through the night last night. Didnt get hit until 6:30 this morning. That was nice! My first full nights sleep in almost three weeks. Could the meds have been causing these to get worse when they finally broke through?

SweetWilliam, When you find out the flow rate for that regulator, please let me know. I'm looking into getting the welders as well.

Check out this article. The aviators use the same. http://www.avweb.com/news/pelican/182079-1.html

Ok all. I cant see a neuro for two weeks to get the O2 now. I've already started my detox slowly. I should be done taking my meds by then and then probably about five more days to get it out of my system. So I'm lookin at about 20 days before I bust. I'm thinking that its almost not going to be worth it since my cycle might start to come back down? Dont know for sure. I do wish I had O2 for the detox though. I started going to a Chiro last week to ease some pain in my shoulder and neck as I usually do when I start having CH. I find it helps with the stress from the HA's too. Dont worry I'm not thinking that its going to releive the HA's as we know it doesnt. I notice that I sleep on my right side with my head all crooked and my shoulder digging into my neck so thats why I go. But I think its changing the activity of the occurences somewhat. After my first visit last Thursday I got hit two hours later at 10 am. I never get hit in the a.m. as I am a coffee drinker and they usually stay away at that time. My times are like clockwork (still amazes me). 3PM 5-6PM (that ones not too precise yet) 9PM, 11PM and then wake up all night long. But since the chiro visits they have been fluctuating a bit and have been a bit less intense. Except for last nights 11PM one. That was a bit of a killer and lasted over an hour. The others I could fight off and were only maybe 20 minutes. Its probably just all in my head..LOL... but I've seen the Chiro now twice and now I'm getting them in the morning as well, but the duration and strength is not as bad. Just thought I'd share

HELL YES when I am in a cycle alcohol is a trigger for me!! That is how I can tell when I'm going to start a cycle. I drink one beer or glass of wine and I get my first shadows of the year. I then know the beast is going to come knocking soon. I have had my Kip 10's triggered by alcohol for the most part. I am SOOOO looking forward to busting this one so that I can take that first gulp of the season!! MMMMMM BEER!

Hey Gaius, Welcome. I am also new here. 15 years episodic. We have been through the same as you. I'm learning everything as I go here this week so just know that you are not alone...I'm sure everone will chime in shortly so hang in there for all the info to the universe that you can handle. For now, search the boards and get as much up to speed as you can. I know this is going to work for me as I used this stuff when I was a kid an went into remission for years not knowing that I busted cycles. I have faith for you too. Chow for now.

Exercising to abort a CH actually has worked for me before a few times, but only for a lower level one. As for the nausea, I have felt a bit before here and there but never actually vomited before. I dont even think I could vomit during a cluster. Just bending over would increase the pain.

I think I have Cracker dry mushrooms. I've done mushrooms many many times in my highschool and college days and probably busted cycles without even knowing. They are not slimy or anything like that if thats what your thinking. I've read all of the info on dosing and I think I'm up to speed. My only problem is the detox stage and getting through the pain without O2. I'm hoping to get some before I start to detox. Eventhough the meds are not working I cant just stop or I could have a seizure since they are ani seize meds. I have to wien off of them. My other problem is that I would like to take a bit more than the recomended dose as I have more experience with shrooms than most people. I also have a group of buddies that want to relive some of the good ol days with me while I try this experiment. Should I just stick with a low dose for now or should I go for the gold and take a recreational dose?

Thanks, Nice to meet ya Raquel. I've been using the red bull but it seems like when I come off of it I'm for sure going to get hit harder than usual. It seem like I just need to let it come and get it over with. I think I'm just prolonging the agony. I will def use them to detox though. I've never used OXY though but it sounds like its the shit.

Hey everyone... I found this site about three years ago when I was finally diagnosed with CH and now unfortunately I'm back. I'm a 15 year sufferer. Here's my story. Like most I was bounced around from doctor to doctor and diagnosed with migraines by each since I was a teenager. I was put on every migraine med with pretty much no success and tried chiropractic therapy for many years. I thought the chiropractor actually worked at some point because I went into about a 2 year remission for some reason. Then about three years ago I started the worse cycle ever. Thats when I did my own research and found CH online. I diagnose myself and started making calls to any doctor that had heard/treated patients before. I found one and explained my symptoms to him and sure enough he ran all the blood work MRI's ECG's etc. and diagnosed me with CH. I am episodic and since then Topamax has worked for me great. Except for the fog and the low appetite and all that jazz I've been pain free for the past 2 year. This year I did the usual. The first sign of my cycle, I started on my meds and all was good... About two week ago, I got hit with a Kip 8 and its been down hill from there. 4 a day since then all high levels and at least one at night and non stop shadows. My doc raised my dose and still no relief. I've never had O2 and I've been suffering BIG time. I dont know what happened but its like they just stopped working. To tell you the truth I've never liked being on meds anyways. My wife hates it too. I'm not the same person. Now I am useless with the hits coming. I cant help with the kids or around the house. I'm afraid I'm at the peak of my cycle now. My plan is now to try to bust it but I'm going to have to detox. How long should I detox? I am on 100mg a day and just stopped yesterday. I want to use the shrooms and I have them on hand. I'm thinking of ordering the RC seeds as well just in case. Any input you can give me will go a long way. Thanks to all. Jeff