Hi
@Londinium, sorry for the slow reply!
Well, since June when I last checked in, I had a nasty crash (although slightly shorter in duration than usual). Then I started doubting the Cimetidine, and thinking it was just correlated with a good patch.
I went back to my specialist and he said not to give it up, but rather to alternate it with a new option, Montelukast. His reasoning was that my system might "get used" to certain drugs, and lose their effectiveness, so you have to keep switching it up.
Around that time, I was also admitted for a tonsillectomy, the purpose being to reduce the severity of my worst episodes (apparently it works in some cases similar to mine). The tonsillectomy itself gave me the worst flare of my life and that lasted for several weeks, but was then followed by a period of pretty good health. Then on my first switch-up to Montelukast, things improved by an order of magnitude more. I felt like the patients in "Awakenings". Instead of having more good days where I could do more, I started having days when I could do
anything. I haven't had this level of ability since around 2007, and then only for short periods.
I started taking long walks and doing sit-ups and roller-blading. Yes, roller blading.
During the Montelukast periods, I've had a couple days with some symptoms, but those days have been isolated and the symptoms have passed by the next day (they can last anywhere between a day and six weeks for me). They were also on the mild side (I felt tired, sore, and needed to rest but without the burning headache and the feeling of being crushed under a rock, like in my worst episodes).
Its been going on long enough, and its been so consistent with the switches to Montelukast that I'm 90% convinced the drug is doing this. I'm usually so careful not to overattribute fluctuations to current treatments, but its just the magnitude of the improvement, which is unmistakeable.
It seems I'm catching more things since the montelukast, and that may explain the odd days of tiredness here and there. but its the antipodean summer here, which is a melting pot of northern hemisphere winter viruses (brought over my visitors), and weird stuff from Asia, and it can be a challenge for the best of us.
I'm still trying to work out how Montelukast is helping me. Something about neutrophils, eosinophils and macrophages I think. But I guess that's a question for another thread!
- long may it continue!