Hi all,


been an off and on "member of the board" for over ten years. I'm a chronic sufferer with an average of 7 attacks per day that each last approximately 90-120 minutes. As a lot of other people I've tried countless conventional and unconventional treatments, none of which provided any long-term relief.

I am here now to advise others and vent about how the condition has effected and still effects my life.

Thanks for "listening",

Xavier

Henker wrote on Jun 26^th, 2012 at 9:27am:

As a lot of other people I've tried countless conventional and unconventional treatments, none of which provided any long-term relief.

Care to share? lance

Over the past fifteen years I've been on oxygen, lithium, medrol, imitrex, verapamil, ergotamine, dihydroergotamine, cafergot, sandostatine, lidocaine, codeine, indometacine, oxycontin, amitriptyline, fentanyl, ... Prescribed by neurologists in Belgium, France and the US. Either they provided no relief, slight relief with an array of unacceptable side-effects or temporary relief.

Alternatively I have tried aromatherapy, light therapy, diets, massage and so on. Those had no effect whatsoever.

If anyone has any concrete questions about one or more of the treatments, don't hesitate to ask.

Currently I am looking into botox and psilocybe. Anyone had any experience with that?

You list the most of the usual suspects but not the dose amounts. I mention that because after coming to this site, I discovered that while I was taking meds "normally" effective for either aborting or preventing CHs, I was either not taking the form most useful (e.g. verapamil ER/LR vs. rapid release) or I was taking a pill form (imitrex) rather than injectable. Same with O2: wrong mask, wrong flow rate. Since, while I am still chronic, I am on a much more effective regimen of verapamil (640mg/day) plus lithium plus indomethacin, as well as having an array of abortives: O2 with demand flow valve (45-60lpm), trex injectables and migranal spray. Sometimes its as much about how much you take as what you take. See Clusterbusters for help with psilocybin. Blessings. lance

Well, I've been on more than one different dose of most individual medicines and "enjoyed" several combination treatments. Honestly, I couldn't give you an accurate list anymore, as I have been off medication for quite while now. These days I just try to cope without any chemicals, because mostly they just damaged my liver and gastrointestinal system. I made a detailed treatment overview a few years ago that should be in the attic somewhere, if anyone is interested.

If you're serious about the mushroom route, please visit   clusterbusters.com    They have people over there who have had tremendous success with "busting" their cycles. It's a bit more complicated then chew a cap and be pain free,  :D   but from friends on the board who have tried it there's a high potential to get pain free.

Joe

When you used Oxygen was it a "high flow" minimum 15LPM with a properly sealed NON-REBREATHER mask with a bag on it? The reason I ask is modern knowledge on this subject has increased success rates considerably. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Don