Why all the hate mail sent to me?

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Posted by Mike L ( on January 04, 2001 at 07:04:17:

I have been on this board for a lttle while. I still feel new and have found some neat people. However I am shocked my so much nasty mail sent to me. It seems that there is much misinformation and bias againstrds the use of narcotics for CH. I certainly listen to and have tried many things listed on this board an will try still more.

I have a great Dr. that will try most anything I can show him as long as he feels there is some method to it or that the dangers are less then the pain. My Dr. has a pain cinic. He has a good rep. amoung other Drs. We have a big university here in Utah. The University og Utah. It is tough to get accepted here and they many specialists here. I have been to their Headache Guru and was told that My case which includes migraines and chronic and long lasting attackswas a tough nut to crack. She reviewed several years of treatment done by a local Neuro. She (the headache guru) told me that my Dr. was one of her best students and that the treatments and the order and very comprehensive record he kept were at least excellent and at best the most thourogh and complete treatment she had seen. She said he gave every med and procedure every possible chance to work. The meds used and the injections given (He even taught my wife to give me pinpoint injections at several locations to my head.) were stellar and that she only had a few other options to try. At this point I was getting at best 2 attacks a day each lasting 3 hours. At worst 3 a day. It still made me mostly disable especially when I had a migraine to boot. Treatment and relief was very difficult to obtain for a cluster attack when I had a migraine, This was patially due to the fact that with just a cluster narcotic pain meds with afairly high dose were quite effective. However narcotic pain meds were of only a little help for a migraine even though the migraines were far less painful then my clusters. I could get some decent relief only with high doses of demerol or morphine which of course was not easily obtainable.

I could get almost complete relief from a far lowe dose of narcotics for a cluster on it's own. The Dr. said it had something to due with the pain receptors involved with a cluster. It was thought that cluster pain came from "crossed wiring" that is that the pain receptors were recieving a pain signal from somewhere (I asked if the pain was real and this was the answer Pain is processed in the brain and pain is pain and regardless of the cause the pain is as as real as if someone beat the crap out of me) and that the narcotics could reroute the signal giving so much relief. The Headache guru said that with some patients she had good sucess with metha done used daily and thought that this may be an option to try if nothing else helped. She listed me as disableed and said that I could certainly switch over to her but that she felt since I had such a good relation with my Neuro and that I could get in to him with a moments notice. He would even give my wife some injectable narcotic to have on special occasions such as a trip or during christmas so I could get out and vist during the Holidays. My neuro felt that 50% relief which I had cetainly attained was probably the best I could hope for with conventional treatments. Howevef he was still relentless in his persuit to give me relief.

Finally I was getting a little worse and we had already discussed 2 surgical procedure. 1) an in patient procedure which would deaden several nerve endings and 2) A more major surgury which involved cutting my head open and deadening some nerves and moving and covering some nerves with a piece of foam. The more drastic surgury was tried on 3 patients by a Dr. who said that the results were not very long lasting on previous attempts. I set an appointment for the lesser procedure. As I was about to be put under a little but still be awake so that I could tell them when they hit the nerve with a small shock I had a migraine and got a normally bad attack when he saw the amount of pain he knew that I could not hold still enough to point out wher the nerve was and that if I moved to much other problems could occur he just put me under for a few minutes and gave me more pain med when I awoke. He didn't want to or think that he could be of much long term help. The only next step that seemed possible and that I had wanted to avoid because of both fear and ignorance of opiate therapy was of course opiate therapy. The Dr. took 2 appointment to explain to me how small the risks really were and the real story of opiate use. I also spent several days searching for books and on the net for opiate info. To my suprize I had come to a realization that I virtually knew nothing true about opiates and their value as a med and the true story on it's risks. I read both pro and con info on the subject expecting to find how terrible opiates were. To my surprize and against my huge ego I changed my view on the subject. Ignorance in this case was truly the cause of my fear. I was ready to try this newfound knowledge. After 2-3 months of carefully monitered dosages, each change in dose was followed with a test of my relexes to see that I was not titrated to quickly as this would cause different results and not alter my receptors the way were trying to produce. For just relief of pain raising the dose as quickly as possible would have been appropriate. after a little more then 2 months, during those 2 months I had 4-5 daily attack each lasting aout 3 hours and very painful, the frequency of the attacks grew less and by 3 months I was skipping days and getting 12 or less attacks each week. The attacks I did get however were still about 2 1/2 hours in duration and were only a little less intense. But I was in heaven. After a year of sucess with this we made an attempt to deal with the remaining attacks, I was at a very high dose of methadone and only get to about 12 attacks per week. If I lowered the dose the frequency od the attacks would increase, proving that it was the methadone that was giving the results.

The Dr. borrowed a med used for cancer patients and only to be used by someone using daily opiates. If someone else would use it they could easily die. The med is called fentynal (namebrand actiq) It was given in sucker form quickly absorbed by my membranes in the mouth. I was moniterd for heartrate and breathing during the first 2 doses as a precaution. In 15 minutes my cluster was 90% relieved and my reflexes were normal and I felt well enough to work. I was given enough to cover my attacks and with only 1 increase in dose I was able to obtain quick relief for over a year so far. When I have a migraine I still need to go down for 2 hours or soo after a cluster but it is very tolerable. Now we are working on my migraines. Imitrex inj. work very well for my migraines even a fullblown attack. However it has twice sent me to ER with a spasm in a vessle to my heart and I cannot use again. Other triptans and nasal imitrex do not give me enough of a jolt to kick my migraine.

With these results for almost 2 years I am surprized at the many attacks and namecalling I get in my personal Email. I have never purposely tried to say that I suffer more or that my meds are the best and nothing else works or can work as well. I am sorry that I have offended so many. I do get a little bent out of shape when someone new comes online and have tried most of the most conventional treatments with little help for years and ask for suggestions which I am most happy to share then get treated as if they children with little or no concept about clusters. Remember they are usually not "newbies" they have spent years of frustration and effort trying beat this and learn about the beast for years. Many have been warned of my evil ways and my scheme to cause harm to so many only because I live in such darkness and misery loves company. Some of your accusations have been most amusing and some very mean spirited. Why? It seems politicly correct to say "If it works for some then more power to you" I know many are sincere in this but many also say it on one side of their face and on the other warn "He's trying hard to decieve you and suck you down" as if I profit from sharing what works for me. I certainly don't manufacture the drugs and I never have sold them. What is my evil motivation? Am I an addict? I don't know but heres the story. I sometimes miss 2-3 days of meds when I am very busy and doing well. I have been taught that the worst of withdrawl occurs during the first 72 hours. I nevec crave the med. The only reason I know I have missed is 1)Most often my wife reminds me 2) I just remember it's been a while since my last dose 3) the worst reason is when I start getting more attack and I count my meds and I've missed several days. I am certainly not physcologicly addicted because there just isn't the reason other then my serious addiction to being pain free. Most people with head pain that seem to act a lot like addicts comes more from the fear of pain then the fear of not getting the meds. It is very nerveracking to think that you are about to get the crap beaten out of you because you have no meds.

All of a sudden that med is very important even to the point of panic when faced with the painful option. Especially if in fact this pain is as bad we say (Yes I believe it is) I don't know many people who would not give a lot not to endure another grueling sesson with the beast. It seems no different then knowing someone stronger then you is going to beat you to a pulp. Please don't scare everyone into believing that opiatetherapy is never appropriate for pain and that to do so is to be weak or give up who you are. I think giving into the pain is sometimes easier then to fight back. I maybe believe that misery loves company may be a factor here. Someone with a bad narcotic experiance may ,not subconsiously of course, want someone else to get what he or she can't get. Please don't condemn narcotic use because of a bad experiance with improper or inapropriate useage. I've been there and had the zombies and the feeling like crap from using the wrong meds or using them differently then I do now. For example I always get sick with daily use of percocet or lortab or tylonal 3 with codiene. Why? because of the tylonol. It makes me sick after a while. OTCs have caused me more rebound problems then anything especilly ibuprofen, which for me is bad because my migraines get fair relief from it. After a few days use I get a rebound headache ,which for me is not getting more migraines rather an annoying and painful headache when the med wears off. Even though I haven't found rebounds to be more of the same headache rather a different headache which seems similar to my migraines but wll always go away after several days of not using the offending med.

I know this may cause some bad feelings for some. I'm sorry. I am more sory for those who may or could benifit from what has worked for me. To those I apologize that I am not more convincimg in showing just 1 more tool or weapon in the "PAIN WARS". My motto is Pain is the enemy it destroys, it mames, it ruins families and hurts loved ones, it causes depression, anger, frustration, bitterness, hate, paranoia, and all that is bad and harmful. It has surely caused death from suicide. If overcome, harnessed or at least reduced from pain can come victory, kindness to others, tolerance, understanding, strengh and humilty. I can honestly say that my experiance has increased my tolerance and love to others which has given me far more then it has taken. My wife has seen me go from overconfident and self centerd and judgemental to helpful, kind, considerate and just plain a better and a partner that can feel her hurt and give her strength when she needs it. I am far more happy then I would have been without clusters. When I my children hurt even a little I never think "That's nothing you should feel my pain" Rather I think how terrible for them it's possibly the worst pain they have or will ever feel. Others worst pain no matter how small is just that their worst pain, For them it is as bad as anyones worst pain. Yes even ours. Please understand I wish no one harm. I will never stop trying to give my experiance to help someone else. So send what you must. Just remeber "if you haven't tried it my way you cannot judge me. If you have you can always say "It didn't work for me but what helped me dadn't help them. Never give up , think for yourseleves, always use others experiances as it can save much time and put you ahead of others which is not a bad thing because the cycle of teaching and giving never ends. Thanks Mike L. I'm not always so dramatic or long winded. You can mess with my mind and give me a hard time I don't mind I am never too serious anymore. Besides maybe my next attack will be my last. That is my motto . My wife thinks I'm unrealistic but she knows it gives me a reason to be happy

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