Posted by Mike L (152.163.195.196) on April 18, 2001 at 03:15:46:
As a almost totally controled 8 year sufferer the last 6 chronic with 4-5 3 hr. attacks each day, missing work totaly for 5 years and having some extremely bad experiences with some "more common cluster meds ie. lithium, depakote, sansert etc. After some research and personal experiance. Looking at all sides as open minded as I can get (at first totaly opposing narcotics because of addiction dangers) have come to realize that just maybe addiction is not such an issue for someone totaly non functional. Some meds I have used if used years on end will cause liver damage heart damage and surely life shortening effects. I have never found any concrete info that long term narcotic use (not street, cut with who knows what or things that are very bad meds for long term use and certaintly not very controlled dosages) actually causes damaging physical problems, except maybe constipation, even if used recreationaly id dosage and purity are known. Believe me I am "anti drug". I have seen what just pot can do to some teenagers. Apathy no interest in much of anything and not much of a life or future. I have a son who has been clean from just pot and what a difference it has made. (And yes I know just pot because if my teenagers want to drive they must be willing to do home drug tests when and if we say). Compared to the side effects I use to have no driving, total loss of days memories and just a plain sick and depressed feeling. It took 4 months or so of daily opiate use done by a Dr. who feels that since I was willing to go through the more normal treatments and ,not just helter skelter but a Neuro that did it exact treatment schedules and kept absolute good records of each med tried and up to max dosage and time for trial, that maybe he could do some good. He talked a lot of neurotransmitters and effects and the changes long term opiate therapy could and I stress could have. If I was willing (which at first I was not) to try for at least a year he would work with me. Within 5 months I was 65-70% better and after 3 years I have 98% control and never get past a 6 except maybe 1-2 times a month. If I chage meds (less) I slowly get worse. I can honestly say that I forget 5-10 doses a month and have gone 3 days forgetting any meds (no craving) and only remember when a cluster or 2 return. No joke. I get long winded!! I'm sorry... But I feel to have many listen or even feel this an option I must explain somewhat because of all the nasty email I have recieved over this. I have read so many times that narcitics are totally useles and I used to prewach this also. But I know very few chronics who have actually used anything that is very close to both the length and type and dosage and slow increases and sometimes wonder even if there may be a few who could be suffering so bad that may and I repeat may get similar results from this treatment. I know many have been warned from this board "THIS IS CRAP DO NOT ATTEMPT IT. IT IS HECK TO BE AN ADDICT". No offense meant. Email me on details if interested. Finding a Dr. who is trained qualified to moniter it properly is the trick. I know it is not for some and I have tried every new thing I have seen on this board that I have not tried before except LSD and Mushrooms and that may come still. I said it. I know I'm defensive but that life Thanks and YOU ALL ARE VERY HELPFUL AND I FEEL BLESSED TO BE A SMALL PART OF THIS BOARD !!! Mike L.