Batik
Rookie
Offline
Posts: 17
Scotland
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Hi everyone. I posted a few times the other month, though by now I can't remember what I said! I don't know yet whether I have masto, and with current UK referral rates I reckon it'll be a year before I'm in the hands of an appropriate specialist. Here's roughly where I am:
* Severe ME/CFS for 16 years - don't think there's any doubt about that diagnosis. * POTS - in the throes of trying to get to the right specialist, but we're about 90% sure I have either that or something similar like NMH. This particular specialist will hopefully be able to get me investigated for mast cell problems as well. * Dermographism - diagnosed a few years ago. Dermatologist I saw about it recently was useless, though told me to go on combi antihistamines. I also have an increasing number of small brown lesions on my skin, which they claimed were warts of some sort, although I think they may have been mixing them up with other skin problems I have (flat brown markings vs. raised skin tags with no pigmentation difference), plus they didn't examine me all that thoroughly and did mention that they couldn't identify one brown marking on my skin (which seems to go red when rubbed, though to be honest it's hard to tell, I'm not sure how much pressure to use etc.). * Interstitial cystitis - somewhat foggy diagnosis by my gynaecologist a few years ago. Not too bad these days. * IBS - hah, I sometimes think they just slap that label on you when they can't be bothered to investigate your GI problems. It's usual with ME anyway. * Vulvodynia - for the last few years; gynae seems to have run out of ideas. Flares up before and during my period. * Menstrual migraine and PMS - migraine goes back to 1993, PMS to 2007. * Assorted problems with outbreaks of itching, breathlessness, red dots on skin, sweating, dizziness, tinnitus, blackouts, falls and so forth, triggered by things like eating or standing up - hmm, this one's been creeping up on me gradually, though it's been markedly worse since I had my gallbladder out in March 2012. No diagnosis yet, the doctors just keep putting me on more antihistamines without actually investigating anything.
Anyway, I went on the combi antihistamines (alimemazine and cetirizine) in August 2012. I'd tried them separately, but together they had the very happy effect of pretty much knocking out the vulvodynia. No idea why, and my gynae had never heard of this either.
I had a very strong reaction to lunch a few months ago, mimicking an allergic reaction apart from the snag that I've been fine with all those foods before and since. That's when a doctor put me on cimetidine. There's a small study somewhere showing that it can be effective for curing calcific tendinitis in shoulder joints, and I have that too, so we kept me on it to see what would happen.
Since the gallbladder surgery ten months ago, I've been unable to take opioids because they cause intense abdominal pain that mimics a gallbladder attack. This seems to be known about, there's a line in the cocodamol leaflet about "do not take after gallbladder surgery" (guess what the hospital put me on), but we haven't found further details. Until recently, I managed to get around it by taking the tablets with food. I only take them occasionally, not daily.
Over the last few weeks, I've been having a lot of problems with abdominal pain. I've found that even if I take the cocodamol with food, the post-surgical pain would hit me sooner or later, and it's extreme. And then I was just getting general abdominal pain, even if I hadn't taken any painkillers. So at that point my doctors told me to go back on the higher dose of cimetidine (I'd been on the lower dose), and after that added in omeprazole, which I've been on for about five days.
Two main things I've been noticing here. One is that when I'm on cimetidine, my breasts are bigger. Apparently this is a known side effect - in men! I'm guessing this is the usual sexism you tend to find in the medical world, that no one has bothered about the side effects in women as much. I don't mind the size increase, but the premenstrual breast pain I got last cycle was pretty damned nasty, I had to go on very strong painkillers for it, and then of course the wretched painkillers attacked my stomach, so that didn't go well at all. Plus my GP has pointed out that breast pain tends to go with premenstrual anxiety attacks, it's the same hormonal thing, and I certainly don't want that being ramped up.
The other thing is that the vulvodynia has flared up again over the last few days, the first time it's been bad since August, and it's getting pretty nasty. And now I have no usable pain relief at all.
So far I've observed that:
1. Combination antihistamines (cetirizine and alimemazine) improved the vulvodynia. 2. Cimetidine made my breasts larger and more painful. 3. Omeprazole and/or a larger dose of cimetidine may be making the vulvodynia flare up - bit too early to jump to conclusions on that one.
Does anyone know about how antihistamines and such affect hormones? Evidently they're doing something!
Next question, does anyone know how this works if you a) do have a mast cell problem, and b) don't have a mast cell problem? Since right now we're only guessing that I have a mast cell problem, after all.
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