I saw the new neurologist yesterday. I found him to be kind, quite helpful and very down-to-earth. Everything my previous neurologists weren’t!
Unfortunately after a couple of hours of intensive examination of my medical history, my family history, my work history, what happened when the migraine started, all the drug and other trials I have been on since, looking at all the MRIs and CT scans of the blob in the head and a thorough physical examination of neurological responses, he came to the same conclusion as the other neurologists.
I have all the classic symptoms of Chronic Daily Headaches stemming from a Migraine (some fancy name meaning out-of-the-blue).
He feels the cyst on my pituitary gland, while quite a large size for what it is, is not the cause of the migraine. He says that the only reason it would be is if it had swollen suddenly as if a hemorrhage. We can tell that didn’t happen as a hemorrhage would have slowly leaked away, and the MRI one year after showed it to be the same size. He has ordered another one this year, just to keep an eye on it.
CDH typically occurs through medicine overuse. That is, the sufferer has a history of bad headaches or migraines and though the years these migraines become more and more frequent. The sufferer deals with this by taking more and stronger drugs until eventually this cycle tailspins into CDH. The way to deal with this is via a few well known treatments to break the cycle.
I’m one of the few of the other type of CDH. Where my migraines had not become more frequent over time and I did not treat them with drugs. With my allergy to codeine, most of the time when a migraine hit, I slept them off in a cold dark room. Neurologists do not know why this sort of migraine suddenly flips into CDH. As they do not know why, they cannot adequately treat it. There are a number of treatments that do work for a percentage of us, but I have already tried all of the available treatments without success.
With current known medical theory, my migraine is here to stay for the rest of my life.
He said the main course of progress now that he recommend is a Chronic Pain Management program. He said there is one at the hospital he is attached to that has a number of psychiatrists, psychologists and remedial physiotherapists attached, but I don’t need that as I am already seeing one of the best psychs in Melbourne and she is already leading me through CPM via Mindfulness and Buddhist acceptance techniques.
He was very straight-forward when delivering all of this news, but he was also extremely kind. He was aware this was not the news I wanted to hear even if I didn’t say as much.
He also informed me that it appeared I wasn’t quite ready to fully embrace the acceptance part of my therapy yet. That I was still looking to clutch at straws any straws. There was one neurologist in Melbourne who studied in the US and she has a different take on headaches. He highly doubts she can me, as her research is not in my type of headache, but he can give me a reference to her and I can see her as a last resort. So I can satisfy my mind, that I have indeed run down all possible medical options. He was at pains to point out that was more for my psychological benefit to help towards my acceptance path than because he felt it would help me medically. Rather he felt I could help the specialist by furnishing her more data in this area that she is not skilled in.
He is sending out a reference for her in the mail and I am to decide whether or not to use it. He also said that if I chose not to use it, or after I finish with her, come back to see him and we will start a regime of reducing the number and dosage of drugs I am on. At this point all they are doing is taking the edge off the migraine and so allowing me to actually leave the house for appointments etc. They are not stopping the pain. So he wants to reduce the dosages and types of drugs in the cocktail until we maintain that edge but hopefully clear up some of the side effects such as brain fog.
Given my history of hating to take drugs of any kind for most of my life, I am quite susceptible to side effects, so reducing these is the one thing he can do to help.