jayhedges

Is the O2PTIMASK a later generation of the Clustermasx? It works well for me with a 3 liter bag at 25 lpm. But always looking for the best way to beat the beast.

CaRL, quote][Looks like GODsby is working on the wrong Alternative./quote] Not sure why we would object to any meaningful research by a knowledgable researcher. I hope he finds something else that works. Clearly its easier to fund studies for "legal" treatments as opposed to "illegal" treatments. Our cause carries on but more power to Goadsby. test below. Beyond damaged nerves, researchers are considering electronic stimulation for headaches. One option is to implant electrodes deep in the brain, where they interfere with signals from the part that causes the pain of cluster headaches. "That's remarkably effective," says Dr. Peter Goadsby, director of the UCSF Headache Center. However, it's also invasive: "You have to drill a hole in the person's head and stick an electrode in their brain." Goadsby is working on an alternative that would put the electrode on the edge of the brain, where the occipital nerve runs in the back of the head. This nerve connects to the part of the brain that interprets headache pain, so interfering with its activity can swap pain sensations for tingly paresthesia. Goadsby has used devices as small as a matchstick to generate the interfering signal, and they have little risk, he says. This treatment could be effective for migraines as well as cluster headache but is still undergoing study. Researchers are working to figure out how best to use the therapy and who is most likely to benefit.

Been a great weekend avoiding social gathereings for three days to avoid how ya doin with that ha thing? Not to mention that chit chat and trying to concentrate on a simple (not to mention useless) conversation hurts and isn't worth the pain. Easier to avoid people but you guys make me laugh and I know I never alone. Is it wierd to feel glad I met all of you? Yea...f_ _ _ that. Wish I never had to hear of this place! Jay

Carole: If you want to stay legal and avoid getting high, rc seeds would be a good choice to abort your current cycle and also as a preventative down the road. But let's get you pf days now. RC seeds are legal so you can ask all you want here. Frankly you can ask anything you want here. If the moderators don't like it they can remove your post, but if you are in pain don't be bashful. You can buy seeds on line and I know "expensive" is a relative thing but in my mind they are not expensive. About $50 delievered for 500 seeds, way more than you will need. They usually ship the same day. If you order them tomorrow you should have them by the end of the week. There are many strings here about seeds andmany places to by them but this is a link to where I bought my seeds. http://www.iamshaman.com/eshop/10Browse.asp?Category=Rivea corymbosa. The Rivea corymbrosa (rc) was recommended to me. I am not sure about the proper dosage for you but you will find it here by the time you have your seeds. I have heard people use a pepper mill to crush them and some make tea with them while others just eat them. You must detox from any CH meds like Imitrex or Predixone meds for 5 days before you dose or it will not be effective. However if you are on any kind of anti depresent, blood pressure etc., don't stop taking them. They are OK, and it can be dangerous going off suddenly. It is always better to tell your doctor what you plan to do. They will not assist or encourage you, but may be able to assist with meds that might be counter active. If you are on meds you may have higher pain or more hits during detox. I did not. In fact my pain level has gome way down since detoxing one week ago and going with only oxygen, Red Bull and a teaspoon of ginger powder with about 3 teaspoons of warm water. Tastes nasty but if youuse it like Red Bull, at the very early onset of a hit, it may help. Oxygen is the main abortive and if you are not having success it is probably because you have th wrong set up O2 Basics you need: 1. O2 medical or welders tank and refill service. 2. Regulator that will get you 12 to 15 lpm minimum 3. OP2timask designed for CH suffers Studies show you need 12 to 15 lpm to be effective. I am using 25 lpm and aborting in 20 minutes. If you are having 4 or 5 hits a day medical O2 will go fast. I decided to buy two large E size welding tanks for about $40 each and $22 per refill. One tank lasts me about a week, but at 12 to 15 lpm you will use less. You don't need a script for anything listed here. You should order an OP2timask non re-breather mask from the link on this site or ch.com. $29.00 and you will get it in about 3 days. The proper mask and a high flow is absolutely necessary for aborting. You will need a regulator to go on the tank to regulate flow. This is the one I started which will go to 15 lpm. You may want to start there and many peple have success at that rate. use this link to buy it for $23.39 http://cgi.ebay.com/American-Bantex-H-M-Oxygen-Regulator-0-15-Liters-/260617275970?cmd=ViewItem&pt=LH_DefaultDomain_0&hash=item3cae000a42 Dosing Basics 1. Buiy your seeds 2. Determine dose and recipe 3. dDetox for 5 days 4. Make arrangements to be relaxed with a friednd and no desitractions for 4 or 5 hours after dosing. 5. You will still have a couple of ha after dosing so don't get discouraged. 6. You may dose again after 5 days. Any sooner will have no impact. 7. Read as many posts as you can here to see what others have done. OK, that should get you started. Others will chime in but my advice is write out a plan. Do the things you can do today, but you can have all of this within a few days. Red Bull ginger powder order the optimask buy a regulator order your welding O2 unless you already have medical O2 Make sure you are using 12 to 15 lpm. order your seeds. Research proper dosing and recipe on this site. Schedule your first and second (if necessary) doses. Good luck, keep us postes and keep asking. Many pf hours on on there way. "We" will get you thru this and "you" will own the beast. It will not own you. Jay from Baltimore.

I beleive the strings here suggest starting with 1.5 grams but they also say you won't necessarily experience psychadelic results at that level and don't need to to bust the CH. Increasing the dose to 3 or 4 grams is approaching recreational levels so shouldn't be a problem either. Did your son detox properly from all meds. That could block any positive impact of dosing too and I'm sure you know you need to wait 5 days to dose again or nothing.....Good luck.

Kathie, welcome to CH heaven. It's the only place where we all understand. You wil find friends here and answers.s RE O2, I agree with Dallas Denny, but understand why you want to educate you Neuro. Follow the link below to download a pdf file you can down load for free, print and take to your Neuro. It is published by the Journal of the American Medical Association. So pretty hard to argue with. http://jama.ama-assn.org/cgi/reprint/302/22/2451?maxtoshow=&hits=10&RESULTFORMAT=&fulltext=oxygen+for+Clusters&searchid=1&FIRSTINDEX=0&resourcetype=HWCIT But beware...It says 12 liters per minute...My doc wouldn't even look at it. She prescribed 6 liters per minute with a regular O2 mask. I suffered with no results for three days until I ended up in the ER with the same article. Dr. Jung (bless her sole) at Hopkins ER actually went on-line and read this article and others and upped my dose to 12 liters per minute with a (shitty) non re-breather mask. It "helped". Then Hopkins home health care sent the wrong regulator and all I could get was 10 lpm. For the record the medical community thinks 6 to 12 liter per minute with a non-rebreather is enough. I don't think anyone here will agree. I am 22 days into my first CH and just today received my new regualtor which let's me go to 50 lpm which is only necessary if you want to hyperventilate. My guess is 15 lpm will help you and 25 for sure. But you will need the awesome non re-nbreather mask Denny mentions that is available for $29.00 here on this web site, but will take a few days to arrive. Buy a regulator that will get you up to 25 lpm and then a welding tank. I paid $44 for the first M tank (good for 30 or 40 treatments) and they come to me to refill for $22. A little different that Denny's deal but well worth it if you can afford it. If your regulator doesn't measure lpm (most don't), no need to panic. The green 3 liter bag that comes with of the mask will help you regulate the flow. Ease open the flow until you can breath at the rate you want (most say 24 breaths per minute for regular beathing) without the bag emptying all the way when you inhale the 02. This is the only mask I have found that eliminates room air so you get nearly 100% oxygen. Use the regulator to control the oxygen flow so the bag never empties all the way but deflates 70% to 80% when you inhale. 20 minutes should abort your headache, but if not wait 10 minutes and repeat for another 20 minutes. Our founder Bob G says nearly 100% success with this protocol. Be prepared for a battle though. It will be a hassle getting medical O2, and easier bit still a hassle getting the welding o2 which ai really recommend. Then get the right regulator and the right mask. Tell your neuro if you want but no way they will prescribe anything more than 12 to 15 lpm and my guess is they will want you to start lower. More likely they are going to presribe meds that most of us have tried and given up on. Not tellin you to ignore your doc. Just warning you that unless he/she is a headache specialist, they don't know much about CH. If you do get Med O2 then you have to babysit the Oxegen provider to make sure you get what your doc prescribed. Then come back tell us all how you are doing. We really want to know!

Have you dosed yet? Does the o2 work for you? I see you've been following Birdman's successful week.

Birdman, I'm a new fan of yours having followed your progress the past 10 days or so. Great to hear you are pf and faguely remember sleeping 8 hours straight. I 19 days into my first CH cycle. O2 set up is working great. Went of my meds Monday and will pick up shrooms tonight to dose Saturday. Anyone want to come to Baltimore for the Buster party Saturday? I'm taking a chapter out of Bob W's book and dosing on the 4th! Jay

All I can say is I hope he and others are trying the alternative treatments that are proving to work for many. Thanks to all of you I am confident that I will never experience this kind of hopelessness. The pain probably, the hopelessness, never!

Bredna: I was in therapy for two years. A wonderful therapist (not too expensive) who put me on Sertraline for situational depression when my wife of 26 years decided she wanted a divorce. After three years of off and on with my wife our divorce was final in January. I was still on sertaline and figured not big deal. I've been dealing with this for 3 years, I'm good. Wrong, as soon s I got the papers in the mail I was a basket case again. Have moved so my therapist wasn't avilable and I supressed my anxiety. And guess what happened 19 days ago at my "emotional bottom". My first CH ever at the age of 56. I'm not saying there is a connection, but in response to your question...that's my experience. Thanks to this web site I'm off the meds my doc gave me the first 12 days (Imitrex, Prednasome and Terapamil). I have a great O2 set up that abots ha's in 12 to 15 minutes and I'm dosing with shrooms on July 4th when my detox is complete. I keep a detailed kip pain chart with treatments and meds and O2. I have a plan to put this Beast at bay and keep him there. Don't let him control your life. Control him! Jay

Bobb, I too have an addictive personality. My father died of scirosis of the liver due to alcoholism. I binge drank in college, and in my 20's and 30's while being a productive member of society. I only drank moderately for the past 5 years and not at all since this onset. Plan to stay off the alcohol for CH and general weight loss for a while. I always thought my classic migraines (onset at age 12) had something to do with stress I put on myself in athletics and academics in my youth and then career. But after reading here I think CH is pretty random, with a high degree of hereditary traits, but no one seems to be safe. No history of migraines or CH known in my family, and I pray my three kids remain free of both, now in their 20's.

Birdman, don't give up. I'm a newbie on my first cycle and just 10 days in but found you guys and am pulling for you because I need to know that stuff works. I finally learned what a shadow is today as I had my fist break in 10 days. Hit the red Bull hard and avoided the last hit when I felt it coming back and now PF for almost 2 hours, but I feel that beast right over my shoulder. Staying for the first day and that helps too. Going to try to get a script for p2 tomorrow. Guess you still remember when you were a newbie. I'm 56 though and determined to fight this bastard. Hang in there and keep letting us know how you're doing. Jay

Donna: We have a lot in common. I'm in day 10 of my first CH episode at age 56. Suffered Classic Migranes from age 13 'til about 10 years ago when the hedaches stopped but I still get the auras seith what seems to be barometric changes in the weather, stress and sometimes diet. But this is a whole new world and nothing like a Migrane that I knew would end in a day. My kip level hasn't dropped below 3 since this started and jumps to 6 or 7 in a few minutes. No pattern that I can detect yet, except I always wake up to a 6 or 7 at 4:40 am after 3 hours of sleep. No head trauma I can think of, but lot's of lower back pain and neuropathy in my legs but I think unrelated. I was a jock, don't smoke, drink casually but no now...am 6'1" and 220 lbs.

They don't stop at 50...I'm 56 and 9 days into my first CH. Araid to go to sleep again tonight. I spent the whole day on the web watching depressing videos and realizing my life will never be the same and for the first time thought why bother. Will, I'm sorry for your family but you are at peace. I can't see living like this either but will try unconventional treatments as soon as I can get my hands on them. :-[