Batik
Rookie
Offline
Posts: 17
Scotland
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Hello everyone! New here, so I thought I'd introduce myself, though I see a few familiar names from the DINET forum.
To start with diagnoses, I have had ME/CFS for 15 years and am severely affected (housebound, partly bedbound). I'm pretty sure we got that diagnosis right, I know a fair bit about ME by now.
I'm currently being investigated for POTS, which I've been showing signs of for a while but which got worse after I had my gallbladder out in March this year. My GP is in the process of trying to secure funding to get me referred to a POTS and ME specialist a couple of hours away. I'm in Scotland, by the way, so think NHS.
Various people on the internet have been suggesting to me for some time that I might have a mast cell problem. I think they may be right, and cunningly arranged to have myself referred to a dermatologist in August. Unfortunately she had no interest in this, told me (erroneously) that the dermographism couldn't cause itching, and told me that the various small brown marks increasing in number on my torso and neck are a species of wart. (I'd originally been diagnosed with dermographism a few years earlier, and nothing had really been done about it at the time.) She took a few blood tests, after which I collapsed as I'd been off my antihistamines for a day (unfortunately the nurses didn't call a doctor, and two hours later I went home), and later wrote me a letter suggesting that I was getting itchy skin because I use codeine. I don't use it that often, and somehow I don't think it's causing itching three weeks after I've taken it. I've had two bad collapses leading to being taken to A&E (ER to Americans) since then, one partly triggered by a UTI, one partly triggered by stress. The hospital can recognise OI but that's about it, they don't have a clue what to do with me.
After I saw that specialist, I started taking different types of antihistamines together, as she had advised. I'm on 10mg cetirizine (Zyrtec) and 10mg alimemazine (Vallergan). My vulvodynia, which flare up horrendously around my period, almost entirely vanished as soon as I started the combination, although taking those meds individually hadn't helped it. I also have an interstitial cystitis diagnosis, though that hasn't been too bad for the last couple of years.
I've not had a tilt table test yet, but I do home versions with my blood pressure monitor. I don't always get a big response, but I usually do: heart rate increase of anything up to 40bpm, and blood pressure all over the place, including a big variation in pulse pressure. Sometimes it takes 15 min before the HR gets over the 30 mark, although those tests are also usually taken from sitting to standing for practical reasons. When I am having a reaction, I start to get dizzy, itchy, sweaty and breathless a few minutes after standing up.
The itchy skin has been getting worse of late. No one really knows why. I'm never entirely sure what counts as flushing or as hives.
A week ago I started to get a strong reaction during lunch. I had to stop eating due to the abdominal pain, though I'd had most of the food. Then we got me into the shower, and my support worker said, "You're covered in red dots." I think it was mainly my torso; it was hard to see my back clearly enough, though we did try with two mirrors. Half an hour after eating, I had sudden diarrhoea, and I also noticed a sharp headache and the pain in my left shoulder (calcific tendinitis) flaring up. I ended up munching a couple of cetirizine and had a nap. I was still painfully itchy by evening, so I rang NHS24 and got a doctor who told me to take an extra cetirizine and prescribed cimetidine.
The cimetidine (400mg twice daily) appeared the next morning. I was originally prescribed it for three days, but since a few days later I started to get intensely itchy during supper (which was reheated leftovers from lunch, and all foods I eat regularly without difficulty), the doctor told me to take it for another fortnight. I also started quercetin with bromelain that day, since it sounds good.
I'm still generally fairly itchy, and noticing that this flares up from standing up, having a shower, or eating.
Before I forget, I noticed something interesting when I googled the cimetidine. Apparently there was a small trial where it was remarkably successful at treating calcific tendinitis of the shoulder, including actually dissolving the calcium deposits. It was half the dose I'm on now, taken for three months. I'm thinking of asking my GP whether it's worth trying, just to see if we can get my shoulder cleared up. That said, I've felt like a dead cat for much of the last two days, and I don't know whether the cimetidine could be responsible for that. Does anyone know more about it?
I'm fairly new to talking about POTS, and even newer to talking about mast cell stuff, so please go easy with the terminology! I've had a very quick browse here, and noticed a few people saying that mast cell problems tend to manifest different in people with POTS. Could you tell me more about all of this?
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