ThatHurtsMyHead

Wade, We're all in this together! Like you, I hope to be able to give back some portion of the support that's been given to me. If you run into issues getting the proper mask and regulator. I'd highly recommend picking up your own. New O2 regulators are quite cheap on ebay. Don't bother with the used ones, as there are enough companies selling new ones for $20 to $40. I just recently picked up two 15 liter regulators for spares. I'm still using the non-rebreather masks from the med supply company, but have heard nothing but the highest reviews from the Opti mask they sell on the ouch.com website (I think it's about $27). I get relief with 15lpm, but many on here recommend the 25lpm. Here's a search on ebay for New, 15 liter, O2 regulators: http://shop.ebay.com/i.html?_nkw=oxygen+regulator+15+new&_sacat=0&_odkw=oxygen+regulator+15&_osacat=0&_trksid=p3286.c0.m270.l1313 Here's the cheapest 25 liter I could find: http://cgi.ebay.com/CGA870-Regulator-BARB-2-DISS-Power-Take-Offs-0-25-LPM-/130539156984?pt=LH_DefaultDomain_0&hash=item1e64bd75f8 Make sure you get the proper fitting for your tank. There are three types but you'll just need to match what you already have with the E tank you have. At any point of the year I have between 5 and 8 'E' tanks around the house. Make sure you get multiple tanks, as it's easy to go through one tank in a night. (But believe me the O2 works!) PF wishes!! Jeff

Oscar, I completely 100% agree with you. The drug companies don't get a penny from O2 prescriptions.!!! Every turn I made when seeing the doctor for my CH, was just another drug to 'try'... It seems the doctors are protecting the drug companies bottom lines... (ok don't get me started Notice I used the past tense when referring to seeing my doctor. Other than a call to update my O2 presctiption from time to time, I don't see him, nor the neurologist any longer. I'm so glad I'm not taking any of their cr$p drugs any longer. Jeff

Zen, You have everyone here pulling for you!! I'm just coming out of a regular 'night hit' cycle myself. They suck worse than anyone without CH can imagine! I 100% agree with Les - Any type of heat increases the pain for me. Cold reduces the pain. No hot showers, hot towels etc. (causes blood vessel dilation, which is counter to the blood vessel restriction we seek) You need 100% Oxygen (O2). Before I started keeping tanks of O2 at the house I made several trips to urgent care centers. (Emergency rooms are worthless, as I never once was actually seen while having an attack. The wait was always so long my attacks were over by the time they called me). Even O2 at an urgent care center may not work well since it may take too long to start the O2. For O2 the quicker the better. You need to get on it as soon as you feel an attack coming on. Welders O2, if you can't get a prescription from your doctor quickly enough. Good luck and PF wishes! Jeff

I third the, "hope never to take Verapamil again"... The first year it worked, the second year it didn't work and instead triggered heart palipitations which I still get from time to time... They were REALLY BAD until I stopped the Verapamil. PVC's (Premature Ventricle Contractions). Your heart skips beats and stops to try and get back in rythm. From time to time I'd be on the edge of my seat just waiting until my heart started beating again from a skip (you can clearly feel it). Sometimes wouldn't start for 3 or 4 seconds. Scarry stuff... yea. you can't pay me to take that CR$P Verapamil again... If it helps other people's CH then great, but I'll stick to other treatments on this site. I like my heart beating and in rythm... You know, makes me sleep better at night just not that long dirt nap Verap had me heading to... ha... Jeff

Holly cow, Had I known about the pull tabs, I'd be putting in for the sweatshirt with all I've been hammering down the last three weeks... I'm about to dumpster dive for 10 or so in the kitchen trash now! I just bought 16 more cans at the store yesterday. Jeff

Personally I'll never go to a torrent site again. Went twice and twice my computer got infected with something the antivirus either didn't see or couldn't protect against. (McAfee stinks by the way, they'll be happy to charge you to 'attempt' to remove something their software let right in). Let us know if you find something AO. I wouldn't mind reading it, but am gun shy of downloading anything that's public. Jeff

Jeebs is right on the money. 1) O2 is way too low. You have to be able to 'huff' 100% O2 for it to be effective (15lpm and up) 2) Verap worked for me one year, but wouldn't work the next. You either need more or you need to detox from it before busting. 3) Pill form Imitrex is worthless. you need the injectors (or again to detox before busting). My cycle last year completely terminated with 2 HBWR doses. The cycle I'm in this year is a little tougher but am getting 4 days completely painfree between dosings. Good luck, and fire your doctor! Sounds like he knows as much about Cluster's as someone that would prescribe hemorrhoid medicine for a nose bleed.... ha... Keep us posted, Jeff

Ting, I'm happy for you that your life is so much better now! Don't stop experiencing those new things, or old things rediscovered. I share your new enthusiasm. Jeff

And the point of that post was??? (loved the clutterbusters!!! though)

I love it!!! Hey where's my Big Mac....? Does this Hypothalimus make me look fat? Jeff

I've found sleeping sitting up in a chair actually reduces the frequency and intensity of the night hits significantly. I guess something to do with blood pressure making them worse? The lower the head, the more the pain for me. Jeff

Jason, Sorry to hear you've having such a bad time of it. Just keep in mind, that it does get better. That amount of Imitrex can't be good for you. To use the methods discussed here you'll need to detox for approx 5 days before Shrooms, seeds, mescaline or LSD will help you I'm afraid. If you have a source for one of the prior mentioned, then you're ahead of the game. Seeds can be ordered off the internet. The two most common are Hawaiian Baby Woodrose (HBWR) and Rivea Corymosa (RC). Please refer to this section for detailed information on the various options and methods. http://www.clusterbusters.com/links1.htm#bustmetds Some here have had good results with Vitamin D, and Licoriche root. You can browse through some of the discussion threads for additional information on these. I and most everyone here can vouch that these treatments work 1,000% better than anything the Dr ever prescirbed for me. PF wishes (PainFree Wishes), and good luck, Please post how things are going. Jeff

O2, O2, O2 - Almost unanimous as the #1 abortive. No fuzzy head at all, like Imitrex and many others. I wouldn't wait and subject yourself to any more pain than necessary. I believe the LSD dose is too low and may be why it's not kicked your cycle down. I'll defer to others here that have more experience with LSD though. I wasn't aware the NatGeo documentary was out yet? PF wishes to you, Jeff

PF wishes to you Gump! Jeff

My contribution to root cause analysis: I'm certain that one or both of two things that happened shortly before my CH started in 1988 are party to it. I was rotating in and out of various foreign countries every few months when I was in the service. 1) Head injury. They had to do plastic surgery to put my RIGHT ear back together. My CH attacks are always on my right side. 2) A few months before my CH started I was taking an experimental drug we were ordered to take. When told it was experimental, one solder refused to take it. He was quickly threatened with punishment for disobeying a direct order. Needless to say, he took it with the rest of us. We had to take it in formation in front of our next in command to ensure we took it. I'm pretty sure we took it daily. It's called Lariam, and is now publicly available, though it's only supposed to be taken weekly by persciption. Side effects are unusual vivid dreams, abnormal behavoir, hallucinations (seen and heard), violent behavour, loss of reality. (so it definitely does something to your brain!). It's available for perscription in the US, but is banned in most other countries. It's used as a malaria preventative. I do recall a few months after coming back to the US that rotation, one guy in my unit went to the funny farm. The MP's had to physically remove him. Simply put, reality wasn't real to him any longer. Isn't the internet great. I haven't read up on Lariam in quite a while. Seems there's definitely more information on it now. from: http://en.wikipedia.org/wiki/Mefloquine "On 2 February 2009, Lieutenant General Eric Schoomaker, Army Surgeon General, issued the following directive: Mefloquine should not be given to soldiers with recent history of traumatic brain injury (TBI) or have symptomatic TBI" Seems they've learned something new, and somewhat disturbing. I should follow up with the VA. Anyway thought I'd share my story of "riding my bike behind the DDT truck". ha... Jeff

Best wishes Tingeling. Jeff

Is there a count of how many people are confirmed? I'm trying to think of how to swap some work around that weekend and get up there. I'm guessing there will be plenty of O2 around (guessing maybe more than the local supplier. ha..), since I won't be able to fly with any. I'd normally drive, but that's a long way from Seminole, FL. Jeff

Gump, Something someone told me once, is to always ask questions. You'd be suprised as to how many people don't know something, are curious or need an answer, but are too afraid to ask. I think everyone here would say the same, but you're among friends, so ask away! Before my RC bust a few days ago I was tearing through the O2 E tanks like you. Sorry to hear you're having a bad time of it. Have you ordered seeds? or working on fungus for your treatment? Jeff

From my prior reading there are hundered and hundereds of different types of mushrooms (if not thousands). MOST have some level of poison in them and very few are actually psycho active or edible. Some poisonous mushrooms look exactly like edible mushrooms. If you do venture, I'd make 2,000% they're the correct ones. Since many different types of mushrooms look the same, I would have no idea how you could properly type them w/o spore prints or a biologist identifying them. Most wild mushrooms found growing in lawns are called toad stools and are definitely poisonous. Don't mean to be a let down, just don't want you poisoning yourself. Jeff

Left brain 10 questions Right brain 8 questions My hits have always been on the right side. Jeff

Boys pants half off... I laughed out loud... I've gotta figure out a way to get up for the CB Chicago get together. I'd really like to meet my CB support group in person! You guys and gals are great! Jeff

Solace, I distinctly remember mine starting in the spring of 1988. Had a K4 or so one day, but didn't last too long. The next day was a K6 and went to the emergency room. Episodic and wasn't properly diagnosed till around 2004. Actually self diagnosed... I found CH references on the internet and brought some printouts to my doctor. I always get crazy dreams very vivid as my cycle is starting. They go away as my cycle ends. (started getting them again a few days ago, so I'm off for my 3 month or so preventative bust in the next few days.) Oxygen and then Seeds have been a life saver for me! Jeff

Positive thoughts and healing wishes here! Jeff

fireface, Definitely! keep us posted. Over the years I've been to the emergency room dozens of times and not once did they get off their A$$ quick enough to CT / MRI scan me during the attacks. I'd sit in the waiting room writhing in pain for an hour or more before getting called back and the hit would always end by the time the Dr ordered the CT or MRI. Would be very interested in what data they captured during your hit. Jeff

Ting, It's been quite some time since my CH started. I've bolded things from your list that I can relate to before or around the start of my CH: * Body aches, not muscular but it felt like it was in the bones or something. * Joint pains * Depression * Periods feeling very fatigue (without a reason) * "Light" headaches * Stomach problems/pain * Infections, various throat, ear etc. * Itchy skin/rash * Sleep, too much or can`t sleep * Feeling numb Jeff