Jeff_007

Yea most likely if it is CH, its gone before the Ibuprofen kicks in.

Thanks Rod. Thought I should be good but just making sure.

Oh, one more question that I couldnt really find the answer to online. What about my regulator? Been sitting too collecting dust. Should I buy a new one of those as well?

Thanks for the info all. I did do some research online as well but wanted some of the opinions of others who have experience.

Well, well... I'm BAAAAAACCCKKKK! Its been 5 years since I last busted (longest remission yet) and my CH returned about 2 weeks ago.. along with others I see. I have a question regarding how to properly clean an O2 mask. I haven't used it in 5 years and its really dusty.... Is there a certain way to clean it properly so I dont get some brain eating amoeba? LOL! Or should I just buy a new one to be safe?

Moxie, Wierd that you mention the brain freeze because that is always how I describe a cluster to someone. They ask what it feels like, and I dont think the poker in the eye (at least for me) is the best analogy. But, I tell them that it feels like an intense 20 minute brain freeze. That seems to hit a nerve (no pun ;D ) for them as everyone know what that feels like. Just my 2 pennies....

Tyke, I think we have all been through this. I dont know how many times that I have tried to tell people about my CH, only to hear them go into how bad their migraines are. Now, I usually cut them off with a little snicker and say somthing like, "oh, these are way worse than migraines". They usually look at me like, "well, that cannot be!" So I now just say, "go look it up and then tell me about your migraines". I usually say this in a demeaning way to get them to try to prove me wrong, only for them to come back with this sorry look on their face and then say something like, "OMG you have that?" Unfortunatly this condition is so rare, that nobody has even heard about it and they just assume that CH is having a cluster of "regular headaches". I quit trying to explain it to people, and just usually tell them to come talk to me when they have looked it up and done some research. That is why places like this are so powerful to a clusterhead. To just be able to have 1 person say that they can relate to you is the most satisfying thing to me. I think I was in tears when I finally spoke to a fellow cluster head. :'(

Welcome home Tyke! You are right about PF meaning pain free. Also, that question about the beer test was also on my mind. Boy do I love my suds, but wouldnt even dare to smell it while I'm in cycle. I am currently trying to bust with RC and am taking my second dose tonight, but was hoping to have a beer once I'm PF for a few days, although it looks like I will be waiting longer after Spiny's comments. Sure dont want to invite the beast back to the house just for a cocktail. Stay strong and keep us updated on your bust. Good luck!

Inside LSD will air again on Sept 21

Also, I would have him lay off the beer until more improvement is made. Even though it doesnt trigger for him, it could be hindering the bust. I found when I was just out of my cycle, beer would bring back shadows and sometimes a lower level HA for the next 2-3 days. Hope those K10's come back down >..Sending good vibes your way. Jeff

Angel, Have you guys been increasing each dose? Maybe comming back down on the dose might help to shake it up and decrease the post dose hits. :-/

Hey all, Just a little update from me. I believe my cycle is coming to an end. I am finally off the Topomax and have completely detoxed. My HA's have been gone for over a week now. I only have a few shadows here and there. I tried the beer test last weekend and had some increased activity the next day, but only shadows and nothing higher than a 1-2. I'm staying away from the beer as long as possible until I'm confident that its gone. I do feel great though after detoxing. Man what a difference to be off that stuff. I'm like a whole new person. I have had my shrooms sitting in the freezer waiting for me to detox, but I might hold off for now so that I have doses for the next round. If my shadows persist, I think I will take a small dose to kick the beast in the balls and stop the shadows. Thanks to all who helped me through the process of detoxing and getting O2. You are all angels in my book. If I do dose, I'll post my progress, otherwise it going to be used for maintenance. Thanks again and PF wishes to everyone! Jeff

Hi CrossT, I was on Topomax for the past 3 years. I get a cycle every spring so I would start it at the first sign of a shadow. This summer, it stopped working for me. I even believe that it made the CH worse once they finally broke through it. Its not something anyone wants to take in my opinion. I was very disoriented all the time. No concentration whats so ever. I couldnt even give my daughter a bath as I would walk away and forget she was in there. NOT GOOD!! No appetite either and no sex drive. (Sorry guys, had to throw that in) I recommend holding off on this as long as possible and try some other methods stated on this site. Good luck! Jeff

Happy bday CMOM!! PF wishes to you ;D

Thanks guys, I agree I'm just probly overreacting to the fluctuations. I cant wait until I'm done with it either. I'm noticing that my concentration is much better now. I was at 100mg as my doc doubled my dose to see if it would help. Now I'm finally down to 25 a day and a few more days and I'm done. Still having a few hits here and there, about 3 in the past two days, but mostly I'm having some very irratic shadows that I've never felt before. Like the nerve is twitching sometimes too. So I definently think the detox is causing it. I'm all good Thanks for the reassurance. I'll be busting next week.

Angel, I'm so happy for you both. The good updates always brighten my day a bit more knowing that yet another sufferer is having success.

Glad its helping Rock I agree...Its a big mystery that we WILL figure out befor the docs. Hell, they are following our lead now

I was wondering if there were any tell tale signs that you are going chronic. Heres why...... About a month or so ago my Topomax stopped working. HA's started breaking through and I decided that I was going to try busting. Of course I need to detox first and I'm still not complete yet so I havent busted yet. But last week my HA's completely stopped. I mean completely even through the night. Not sure at that time whether the cycle ended but it did not seem to taper off and I have no idea where I am within my cycle at this time. The PF days lasted for 5 days with a tiny shadow here or there but no O2 needed at all. Now the HA's are starting to come again. I've had a couple the past two days and then woke up last night with one and had to abort with O2. I have about 9 days before I'm completely detoxed and can start busting with shrooms, but I was wondering what people think about this. Could the detoxing be having this effect on the HA"s? Could this be a sign of a cycle ending and another one beginning, and maybe going chronic? Anyone else ever have this happen??? Thanks for any input....

Not sure if these are anything like shrooms, but I've read to stay away from dairy products prior to dosing shrooms. Good luck Jay, I hope they help

From what I've been reading Jay, TMJ WILL affect the Trigeminal nerve as well as the muscles you have mentioned. My chiro also could work certain points in my shoulder, neck, jaw and head and induce or reduce headaches instantly. We have been working this jaw theory now recently, and I have to say that its definitely working for me. I have not had a CH since last Wednesday. Only a very mild tingle of a shadow here and there and its gone as soon as I start the TMJ exercises. I really think there is a link with Clusters and the TMJ. The Trigeminal nerve also meets up with a "central nerve bank" so to say, at the base of your skull in your neck. Thats where the signals are transferred and carried back to the brain. So, neck, shoulder and back issues could also effect these nerves as well and can occur due to misalignment of the jaw, neck etc. Now, there are still many unknowns, but I'm trying to figure them out. Like, why do shrooms, LSD etc work? I think its a combination of things. But heres what we know so far. 1.The bonding of the molecules to the serotonin receptors. 2. Shrooms make you yawn constantly. This releases stress in the jaw and may help to reset the TMJ due to the long deep yawns that are produced. 3. The general sense of wellness that occurs there after which can reduce the tightness of muscles that could be triggering the nerve activity. These could all be contributing factors. I would like to investigate what hallucinogens do specifically to the parotid gland. This is the largest salivary gland in the face, and I've noticed alot of salivating/mucus while tripping. Also, the Trigeminal nerve passes right through this gland and this is the one he pushed on that seemed to release something last week and bring me into some PF days without busting.

BTW. My Chiro sent me these links today. This is great stuff. Take a look at the anatomy of the TMJ and read through it. Keep going because there is a special section for the Trigeminal nerve and pain sensory. http://www.chiropractic-help.com/TMJ-anatomy.html http://www.chiropractic-help.com/tmj-exercises.html

I have always said this!! Anyone who has this is the toughest person you will ever meet. In mind, body, and spirit! You can overcome anything, even this!!

The chewing could be setting something off in your Jaw?? :-?

Jay, You've probably heard of it, but look into Trigeminal Neuralgia. That sounds like the touch kind of headaches your getting. Usually from what I've read, they dont last as long as yours are though.

Also, Has anyone else ever noticed that when on mushrooms they yawn excessively? I do. Yawning is a tension reliever as well. I started yawning excessively when performing these.