Tony Only Posted January 18, 2011 Share Posted January 18, 2011 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 Quote Link to comment Share on other sites More sharing options...
Bonkers Posted January 19, 2011 Share Posted January 19, 2011 Welcome, TripleT. Lousiest birthday gift I've ever heard of. Sorry to hear you're getting bombed. There's a lot of really good information in the ClusterBuster Files you can get to from the Forum Jump at the bottom of the page. Very likely some of it could help you. Read and ask questions. I don't know how anyone on this side of the Atlantic could help you directly but members living in various parts of Europe may well be able to. Stick around. You just never know. Ron Quote Link to comment Share on other sites More sharing options...
clustermom13 Posted January 19, 2011 Share Posted January 19, 2011 If I were you, I would stay FAR away from the hospital. Work on detox from the poison, I mean medications you take, and work on a busting plan. Please don't misunderstand, I sympathize with the pain you are in, and that you have followed the only guidance (if you can call it that) you have from the medical field. Most of us here have given up on our doctors plan, and followed our own plan, with much better success. My son has been on all the medications you mentioned, and in hindsight we now know that they all made him WORSE over time. The "big guns" you mentioned, IMHO, are a bad idea. Like Ron said, there is a lot of information here to absorb, but I feel in my gut that you have found your way here for a reason. PF wishes! Quote Link to comment Share on other sites More sharing options...
Tony Only Posted January 19, 2011 Author Share Posted January 19, 2011 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 Quote Link to comment Share on other sites More sharing options...
clustermom13 Posted January 19, 2011 Share Posted January 19, 2011 FYI if you post under "share your busting stories", viewing is limited to members of this board. Quote Link to comment Share on other sites More sharing options...
Tony Only Posted March 1, 2011 Author Share Posted March 1, 2011 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) Quote Link to comment Share on other sites More sharing options...
Tony Only Posted March 1, 2011 Author Share Posted March 1, 2011 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 Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted March 1, 2011 Share Posted March 1, 2011 TrippleT, I think you'll find many here with similar stories of the crap doctors perscibe for our condition. I started heart palipitations after taking Verapamil. The Dr said there was no way Verapamil could cause heart palipitations. He was wrong as it started shortly after starting the verapamil. I've since read several others with CH also started heart palipitations after taking verapamil. (enough of my rant. ha!) I can attest to the solutions on this board do WORK! I have my life back 100% due to this board! Review the documentation and ask questions as needed. Pain Free Wishes To You, Jeff Quote Link to comment Share on other sites More sharing options...
Tony Only Posted March 1, 2011 Author Share Posted March 1, 2011 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. Quote Link to comment Share on other sites More sharing options...
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