Cluster variants

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Posted by Mike L ( on December 02, 2001 at 04:31:03:

After 5 years of intense and very methodical treatment of my chronic Chs with minimal relief My Neuro suggested the following. Since you don't respond well the the most accepted cluster treatments I suspect you have a slight variance of a typical cluster sufferer. I have noticed a second type of cluster sufferer on this board that responds to slightly different treatments.

For example. I suffer migraines also and an imitrex shot can give me quick and complete relief of even the most severe migraine after 2 days of pain. However it has no effect whatsoever on my clusters as I have tried numerous times to use it. I also notice that my migraines resond very poorly to narcotics and with a normal dose sometimes even get worse. Again many CHers have the same response.

Since I did so well with narcotics my neuro refered me to a pain clinic that was very up to date on narcotic therapy and suggested I try it.

After 2 months my clusters went from 3-5 three hour attacks daily to less then 7 attacks each week. I asked how opiates could not only help with the pain but reduce the number of attacks my Dr. told me the following.

"What we have noticed is that most CH attacks respond to imitrex. Imitrex seems to be effective on the so called "vascular headaches". However we believe that a second and less frequent type of CH patient seems to have a neurological link (that is that the neuroreceptors cross wires "so to speak" and that opiates actually cause the effected receptors to perform more normal when on opiates, especially opiates with no extras like tylenol, aspirin, or ibuprofen. The same patients seem to respond better to the antisiezure meds like depakote or neurontin. (This was exactly the case with me.) It has been a blessing for me and my family. I have virtually no side effects from the opiates and I haven't even experianced much withdrawal when taken off meds even when cold turkey from fairly large daily doses. I asked my Dr. why this is. He suggested "Since the opiates cause your neurotransmitters to perform more normal you virtually do no respond the same to an opiate user witout this desease. I have never felt high from the meds and I have undergone monthly reflex tests and from the time I started on opiate therapy until 2 years later my reflexes have quickened by 34% even on peak dose. They believe that it is simply because when in pain my reflexes are slower and with relief they are normal,(That is the opiates do NOT increase reflex time). I have had severe side effects from many of the common cluster meds including depakote, lithium, verapimil, imitrex, serzone etc. I once stared blacking out for a few seconds 10-12 times a day caused my depakote which also gave me some bad hallucinations.

I guess my point is this. If the more common cluster meds don't work. (You must give themm enough time and dose to be sure) Try something else or find a Dr. who will.

Another comment. I have come to believe that the term "DRUG SEEKING" when used to label someone in pain is usually just "PAIN REDUCTION SEEKING" and when the dose is too low your body knows that more will help and insists that you get your but out there and give it some relief. My Dr. says that too low of dosage of opiates is very common and when the proper dosage is found the seeking ends and does not escalate like some Dr.s fear. When my dose was just right and has stayed the same for over 3 years (And it is a high dose). I find that at the end of the month I usually have missed 10 doses or more. This never happens when the dose is too low.

Just a thought. Thanks for all your friendship and help. Mike L

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