Those new to BB but not to cluster attacks who get little relief.. (Chronic)

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Posted by MikeL on November 04, 2001 at 07:50:32:

I have been suffering from CH for about 11 years. I am 46 years old. I have been chronic for the last 7 years. I have suffered migraines since a teen. However for the last 2 years I suffer and endure only a fraction of what I use to. After 5 years with a Neuro who treated me with complete dedication and honesty. He gave a verbal recorded report each appt. and had transcribed to my records. I was allowed to review my records freely. He used a very methodical approach using each med or combo of meds a long enough time and to the max dosage before changing meds or adding a new one. I was always concerned with the long term use of my meds and how they could shorten my life or cause other problems, espesially liver, heart and circulatory systems. Many CH meds are not great for long term use. My Neuro had me go inpatient to a Headache clinic for over 3 weeks. His conclusion and the one from the clinic was that a 50% reduction in number of attacks was the best they could probably obtain with the convention treatments which included about every med I have read about in this BB or from books, including, plus non med treatments like 02 etc. With no meds I was getting 3-5 attacks daily each lasting about 3 hours reaching a 10 on the kip within a few minutes and remaining high for about 1 1/2 hours before reducing in intensity. My neuro realized that this kept me from working at all or any hope of being hired. I own an Auto repair shop and my employees accepted the responsibilty of operating it with some help from my wife who had to go to work full time despite having several young children at home. My neuro reffered me to a Dr. who specialized in Chronic Pain Management and was an anesthesiologist. The idea was to maybe manage the pain through meds , surgery, physical therapy. I had learned self hypnosis and biofeedback which helped me a certain degree. The Dr. at the pain clinic thought first of trying surgery. (He actually took the time to review my medical records closely.) He found from previous experience that if he could have me in his office during an attack and put a local anesthesia through my nostril to a nerve center and got relief the surgery would be worth a try. I did NOT get relief so he opted not to try surgery. Narcotics had always helped in relieving the pain some and I would use them for certain days if I had to be somewhere, ie. a childs school graduation, and take them 1/2 hour before my atack would come according to what time I was getting them the past several days. I never got more then enough for more the 5-10 days relief in a month. Some Dr.s thought that because I was always worried about getting some each month I might have a drug problem as this seemed "drug seeking". This caused my wife and me some concern niether of us wanted to think of me as a drug addict who might go out and do some horrible deed to get drugs. My Pain Dr. smiled and said "Don't you think that it may just be that you are seeking some escape from the upcoming attacks you are getting. After all if you knew that several times a day some PRO Boxer was going to come and smack you in the head for a couple hours 3 times a day just for practice and that some pill would keep him away, I certainly wouldn't call you pill seeking rather extreme pain avoidance seeking!" The reason most sufferers of any kind of chronic pain have these tendencies is the fact that they just don't get the right dosage or amount of pain meds. Undermedicating pain to him was one of the biggest problems with most sufferers. He said that some of this is simply due to fear that the DEA causes many Dr.s and Pharmacies. They can go in any time and look at records and if they see that Mr X is getting enough Pain meds to use on a daily basis. If someone uses daily they assume the Dr. or pharmacy is supporting an addict and can be prosecuted for doing so. This and the much misinformation about what opiate meds really do and don't do causes many to suffer needlessly. I asked why he was not worried about it he explained that as an anesthesiologist with the proper credentials on pain management he had far less problem with this. He said that the most up to date research on pain management is just starting to trickle down to Dr.s other then those who specialize in it." He said in no uncertain terms, that the idea that pain is not a disease and does not kill or cause further illness therefore there is no medical nessesity for eliminateing it is unacceptable because it can cause such a heavy loss of "the quality of life". He said "Pain is the enemy for you and our clinic and we will agressively do all within our knowledge and power to destroy it!". Needless to say that my wife and I were in tears and had some hope of a more normal life. He spent a great deal of time explaining to me and my wife his views and approach to this idea. He had several CH patients and a few had responded very well to methadone. He explained a lot about neurotransmitters and pain receptors and explained that his view about CH was that it was in fact a neurological desease. That such a desease caused the neurotransmitters to cross paths to pain receptors causing very real and devestating pain, which accounted for the fact that mind would hit with just a few tugs in my right eye to my eye shutting down, watering profusely and cause "drop me down to my knees pain" in a very short time. He told me if I would give him 6 months he could probably have me working again. Still hesitant and very misinformed about the ways narcotics worked and the problems of addiction vs physical depedence, and in truth the fact that when used properly and if I could tolerate them they had very little effect on my heart, liver, etc.. He also explained that if I responded like others I would have very little side effects because they in fact would make my (receptors, neurotransmitters, etc.) more normal. He said all this would do would reduce the number of attacks and since it was also a pain med cause less pain. I agreed to give it a try. In 3 months I went from a minimum of 2 three hour attacks each day to less then 5 each week and to boot he gave me a narcotic sucker that would kick my CH attack from a 10 down to a 4 or less in 20 minutes. I could work again and be a Dad again. I've been this way for a couple years now. Unfortunately I still have a lot of migraines. Which respond very well to imitrex but 3 years ago I was in the ER twice with a reaction from the imitrex that caused a main artery go into spasm and cause the symptoms of a heart attack. I was required to give it up. Narcotics however do not help my migraines very much compared to the way my CH respond. So I can't always work full time but I suffer so much less that my CH are not in complete control of me. The only negative side effect is constipation which is easily remedied with diet and natural meds. My Dr. said that he would not pursue such treatment unless I had tried the more conventional ones first especially O2 and some of the meds withput long term health problems especially sansert or prenizone just as an example. I know that what helps me may not help you but It would be a shame if it would and you didn't try iy because of the misinformation about PROPER narcotic use. If you suffer and haven't been helped much with the meds and methods which are described so well in this BB, you may want to investigate. You can email me for more info. I am sorry for the length for those who are not interested or have not found this of much help. Good Luck. PAIN RELIEF RULES not PAIN. Mike L

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