Tony Only

http://www.causes.com/actions/1720519 I created the Action to benefit Clusterbusters. Please share as much as you can. Thank You

I was browsing around this message board trying to look when Les Genser had last been seen on the board ... it's been a while. Let's hope we have not alienated him from here, in my opinion he is one those rare ones that people in here should just about beg to stay on board and help us. I have seen this happen before (on finnish CH sites) people in some way "attacking" the helper, someone with good intentions gets mocked down - why is it always with CH people, I don't know ... let's hope this is not the case and I have just misinterpreted the whole thing. Seems that Les has more knowledge and wisdom (and sufferer's point of view!) than all the doctors I have seen in my life combined. And that's many.

Seems to me that this was rather an effective option, how come there has not been any discussion about this anymore. Are you people still using this or have I missed something ? Few people here in Finland tried this when this thread first was posted and I have reports that liquorice root that Organic Herbal Remedies sold was the right kind and it did it's job. Thing is, the label on their current liquorice root has changed. Would anyone know is this still the right kind? The dosage is different and the country of origin. The old label said "This product only contains tincture of organically produced liquorice root. Ratio of herb to alcohol 1:3. This tincture is an extract using 25% v/v organically produced pure grain alcohol. Herb from China. Manufactured and bottled in the UK." and the new one says "Ingredients This product only contains tincture of organically produced liquorice root. 1ml is equivalent to 500mg of dried herb. This tincture is an extract using 25% v/v organically produced pure grain alcohol. Herb from India. Manufactured and bottled in the UK."

Anyone still using liquorice root succesfully? I am curious to find out now that I found 2 bottles from my old apartment

Been on that ride as well Well, I've been a test bunny with magnesium etc. but legs ain't getting better, I'm thinking something to do with blood circulation and Verapamil. Got hit 2 times yesterday, still - 4 PF days was something amazing.

I have the same kind. There might be test button behind the air bag which you can press and get the air flowing even when not inhaling. This one is still not working for me, max flow you can get with it is 10L/min.

For me it's extremely important that the mask is 100% sealed; I have taped all the tiniest holes in it etc. Maybe even more important is how one breathes. Deep, long inhaling at the very moment on the 1st signs of an attack - staying calm and not "panicking". It took me over a decade to learn to breath "right" All the best for you

Few weeks back I went bottle per day, that's 20L. Approx 7 bottles a week. This is interesting how different people use different methods. I have demand valve (it's integrated in the bottle) and it does not work for me though it's 100% oxygen (and cost effective since it only gives O2 when inhaling). For quick stop for my clusters it's my custom ER mask and 25l/min or more. And in my case it's all about the nose. My cluster is on the left side, so if oxygen is not flowing in my left nostril and even if it is but my nostril is clogged the pain won't go lower before I get my nostril open and ozygen flowing "right to the right spot". It's always been like this but I only realized this in the last years when I have had top use oxygen a LOT. Most people seem to have these, nostrils, nose and even those critical spots - look for them if you haven't found one (I'd bet they are somewhere near nerves).

Thanks for all the answers ! My magnesium was oxide, bought citrate. But when I read and saw stuff about both magnesium and calcium it first seemed I might have too much one or the other or some kind of total imbalance going on. Google "Deadly Calcium" it's a documentary, I won't be taking calcium for a while after seeing that. Anyways, I was almost 9 months full in the most horrible cluster headache pain cycle in my life, was already diagnosed as chronic. I left calcium away completely. Been pain free for over 3 days (haven't had any break in 9 months!) now. I'm just like WTF. Cut down magnesium half of what I have used to take. Now I'm scared to do any changes since this is completely amazing that the pain is gone. I always try really hard to "solve out" why my cycles end. Now there's just too many factors to figure this one out, but I am not complaining. I have kept my apartment's ventilation windows wide open 24/7 about the same time I've been pain free (though it's -10´C in Finland ) and I would bet this is the one. Never, ever has my cycle ended like this and I had almost given up hope and admitted to being chronic. Got my life back. Even for just 3 days now !

I'm kinda new here so maybe this has been here already but I didn't find anything by searching "acupuncture" Anyhow, I have a gift card for acupuncture session and came upon this http://www.ehow.com/video_7368721_acupuncture-cluster-headaches.html

I did (before I came upon your tip) and printed it, great job *thumbs up* haven't printed this much stuff for years, I have piles and piles of prints everywhere ;D So much information. If we'd have people like Les in healthcare we'd have "what a beautiful world" in Armstrong kinda way

My CH started pretty much when I had my 1st tooth (normal one, not a wisdom tooth) removed. Had some root canal work going on as well. As I myself have sometimes thought of the connection, my dentist has always said there must be one and has been "over cautious" taking care of my teeth. Which are horrible, to date I have several teeth removed, lots of root canal work, fillings (30+) etc. Would not surprise me at all if there would be a connection, in any level (maybe a starter or something).

Imitrex reduces the vascular inflammation but it should do it on your head only. Hmm, the more I read the more confused I get; mostly about either too much or too little magnesium and/or calcium have kinda similar symptoms. :-?

Same here, I've been on verapamil 720mg per day mostly and I had to force the doctors to get an electrocardiography and it wasn't good. Been prescribed a drug that slows pulse and drug that speeds up pulse on the same prescrioption; woke up on ER. Some of my veins have been surgically removed from the same side my CH is which made things lot worse. Because no one had a clue. Ended up diagnosing myself. I think I have met 1 doctor I would trust in 18 years. Finding this place is one of the greatest things in last six months. Now there's hope again.

My usual verapamil dose has been 720mg and in the last years I have thought of it as a cause for real bad cramps on my left leg and magnesium has been added to help with this, have to try leaving it and see what happens. Calcium is because of the bone loss (don't know the correct word in english) caused by cortison so that will be a tougher one to drop but have to try. Thanks.

It's my 18th year with CH, been episodic so far (summers) but now I seem to have turned chronic. My legs have always been bad during attack episodes and I have always blamed cortison but now I am not so sure anymore. It's been a while since I have used it and my legs just ain't getting better. It's hard to describe, it's not really pain (if compared to an attack) more like constant little cramps 24/7 on the back of my legs and calfs. It's hard to get my legs straight. And this condition gets worse during the day, by nighttime it's hard to sleep because the way they feel. Could Verapamil or Imitrex cause this ? Or maybe some of my vitamins, magnesium, d3, calcium ? I'm sure this is CH related and just curious if anyone else has or has had same problems.

Gracias I got one guy at herbs wholesale to search the stuff for me here in Finland, he could not find any with alcohol still in it. So I have 2 bottles coming up from the link above. Anyways he was rather interested about liqorice root in treating CH (more interested than any doctor I've seen in past weeks).

Oh and I had printed with me the study about Psilocybin and LSD on CH (from Neurology) and also a lot of information about liqorice root; 4 out of 4 of these doctors refused to even take a look at them. This is just nuts. I had appointment with 2 of these clowns, I had photos of my back where was marked with a pen the worst cramps etc. so possible doctor would locate these as easily as possible - neither of them looked at these either; "the pain is in your head not in your back" Goddamned. :-X

Thanks for all the replys. Now to think of it the reason why I have stayed away from hospitals and private clinic's, doctors altogether (over 10 years) is because I have grown to be suspicious; I have never had good treatment for my CH. Now everything got so bad that I was 5 times in a week at ER so they took me in. And now I am even more distrustful againts doctors as I ever have been. I've seen 5 different neurologists in past 2 months. They all work in the loocal hospital and have their private clinics but they are completely out of it when it comes to Cluster Headache. They've prescribed me medications I know won't work, medications which have even been studied NOT work on CH etc. I am not completely sure would I be alive if I had not said NO to these "treatments". They did lot of damage already, my legs are gone - last summer I made long bikerides daily now I can barely walk I got injected 1000mg cortison which actually stopped attacks for 4 days. Got anesthesia on my occipital nerve, three times (helped for 24 to 48 hrs). Got anesthesia on nerve called stellate ganglion http://en.wikipedia.org/wiki/Stellate_ganglion; doctor performing it said it usually helps on chronic headaches even on CH. Nothing. Now I'm pretty much hopeless, still in some kind of denial for being chronic. I'm still on verapamil and a drug called Lyrica (prescribed as "let's try anything") and Imitrex for attacks which would make me unconscious. Dosing all those down, just ordered some liqorice root, and now I'm off to store to pick up some D3 and Omega 3. Probably won't visit another doctor/hospital ever again. (and sorry for bringing this topic back up, this is just therapheutical in some way most of you probably know)

I posted an order myself today. I'm going now towards the more "nature" way treating my CH. I pray to the force that this helps.

Thank you both Because I'm so new to the site I'm wondering how one should be cautious what one writes in here; I mostly will not be, cautious I mean - I am looking for help. Something to save my life, what's rest of it - it's a matter of life or death here. I read about this substance psylocybin in finnish headache association's newsletter and it sounds just right to me. The "cure" is in the nature. All man-made "medicines" are POISON. I know this, I understand this completely and still I put them in my system. Anyone with CH can probably relate. If there is a way for me to kick these killers out of my life and feel healthier, feel better and have as normal life as I can, sure - I'll take it, I'll try it. Possessing psilocybin is illegal here in Finland. I have my own law I listen to, my heart and my soul. And my heart says "stay alive, keep the faith" Ps. sorry if I sounded bit aggressive, it's just this cycle

I have known about this site for some time but just now managed to register and log myself in. Mainly because I am now on cable DSL internet connection at my friend's place (first time for months to get outside my apartment because of infernal cluster episode). I don't know is this just me but if someone starts up mobile internet connection on laptop anywhere near me, I can be 90% certain to have an attack within an hour or two. I am from Finland, we have different network here for mobile phones (2G) and for mobile internet (3G) and 3G seems to be a trigger for me. And everyone can imagine how difficult it is to "escape" that network in modern day society. Something to do with waves, electricity and electric brain activity, attacks I guess. Anyway, I have had CH since I was 17 and I'm 35 now. Gone through pretty much everything like lot of people here. Seen a lot of doctors. Only one or two I would call a Doctor. Ended up once upon a time in hospital where they removed most of my blood vessels from the left side of my body (my CH is on the left) as a kind of a 'lucky shot' - "maybe this will cure that pain you have". Well it didn't and things got helluva lot worse. Anyone noticed how hard it is for a doctor to simply say: "I don't know. I don't have a clue. Gotta ask someone who does." I could go on forever but try to keep this short so; my cycles have been coming every year for 18 years starting about May and ending at August. I have had the worst attacks CH sufferer could have and have had max 12 attacks per day. But for so long I have been able to resist this somehow with (these medications are probably slightly differently named in the U.S.) Verpamil as a preventative and Imigran and 02 as abortative. I have also had a LOT of cortisone (Prednison). The side-effects from all the drugs have been destructive and now I also have completely new problems with my health brought on to me by these "medications" and operations. Last year 2010 the cycle did not start as it would have on May, but it started on my birthday (nice one, eh) in July and has not stopped since. 4-8 attacks every single day, that equals one whole tank of O2 + sumatriptans. So far I have not met a doctor who's advice would do some good, I've pretty much self-medicated myself and Thank Gog I've been finally approved to be taken in at the local hospital. Though I am already "ready for the worst" - for what I know they just use the biggest guns over there, strongest painkillers known to man to "kill the attacks". I am still to say at least STUNNED by the time this cycle started, how long it has lasted and how freakin' hard it has been. Here in Finland most people with CH have been vaccinated for swine flu and some are saying they are having worst cycle of their lives after that shot, the longest and completely out of place. That's me. I am absolutely, completely out of hope right now. Sorry this was a bit long I will be following the board with great interest. And greetings everybody and sorry you probably have this Devil as well if you're reading this. Pain free days for everyone As long as there's life there's hope I guess ! EDITED: excuse if my english is a bit off, not my mother tongue