Batik

The highest PP I've had was 90, when my BP was 152/62 when I was just sitting peacefully after lunch. I've also had a PP as low as 12, when my BP was 93/81, and on another date when my BP was 126/114, again while sitting down shortly after a meal.

I gave up on shaving my legs as no matter how I did it, they would hurt for the next week. Same goes for epilating. When my ex was here I would occasionally borrow his beard trimmer, as that produced a fairly good result without causing any pain.

The thing about melatonin is that your body produces it naturally, but not if you're exposed to blue light in the evenings. I use darkness therapy, which involves blocking all blue light in the evening in order to stimulate melatonin production. When I took melatonin tablets, they didn't do a thing for me, probably because I was still exposed to blue light before bedtime (computer screens emit an awful lot of blue light, as do TVs - think of the blue glow you see if you walk past a house where the TV is on in a dark room). Darkness therapy works as well for me as a good sleeping tablet, without any side effects or risks. I ended up putting together a small website about it here. I wouldn't touch Ambien with a barge pole, it's dangerous stuff. In my case, it made me hallucinate badly, and I was exceptionally groggy for the next week. Benzodiazepines do the job for me, but they're highly addictive, and I would never use temazepam for more than 3 nights running, in emergencies. Gabapentin improved my sleep while I was on it and caused the most horrendous insomnia when I came off it, which was still affecting my sleep months later (massive withdrawal problems), so I wouldn't recommend that either. You know that teenagers naturally run on a different sleep cycle, right? It's very common for them to have Delayed Sleep Phase Syndrome, which I have as an adult too. There was a study run on fixing teenagers' sleep cycles using both exposure to bright blue light, and amber glasses which blocked blue light, at the appropriate times in the morning. I don't often hear about using blue-blocking glasses in the morning, but if you're getting up that much too early for your body clock it makes sense. Rather oddly, the study did not incorporate using blue-blocking glasses in the evening, which would also have done the trick, but I suppose that would have been too many factors to include in one study.

You know, my digestive tract has been a smidgen better-behaved since I've been on combination antihistamines, now I think of it.

I'm not going to add anything to the poll now as too many people have replied already and it would skew the results, but gluten sensitivity would definitely be a good one to ask about.

Yes, I did have a look through some of the polls, though I hadn't worked out the advanced search at that time so it didn't turn up anything like this at the time. Although I'm having a look through the three pages of polls now, and if there are other polls of this nature, it's not made clear from their titles (there are quite a few polls which don't explain what they're about in the title). I don't think there's anything wrong in focusing on certain areas in this poll. Just because it doesn't show other causes of POTS does not mean that the numbers of people with EDS will be distorted. If 1 in 6 people here have an EDS diagnosis, that will be true whether or not other conditions are listed. I can see how separating out cause and effect would also be useful, but I think a simple poll which just lists overlapping conditions is still of value. And with several conditions there's a chicken-and-egg situation at best, anyway. POTS commonly co-exists with ME/CFS, but we still don't know exactly how the two are related and whether one causes the other. I was aware that there were doubtless many more medical conditions which turn up together with POTS, but I wanted to keep it relatively simple, and these were the ones which I was noticing coming up in the forum a great deal. You can't do sophisticated surveys on this forum with the built-in poll function - in fact, you can't even get it to list the percentages correctly, as it goes wrong as soon as you enable multiple answers per question. If you were design a poll to cover the same ground as this, I'd be really interested to see how you'd do it, as you evidently have far more experience with POTS than I do.

Oh, you just meant an ordinary blood pressure monitor! Yes, I've got one of those already. I thought the "hr" meant "hour", not "heart rate", so I was assuming it was some sort of ambulatory monitoring system. I'm increasingly showing allergy-type reactions, which is very odd. Yesterday I had a horrible reaction to lunch (I suspect the black garlic as a culprit) and still haven't recovered from the itchiness.

I'm still waiting for the quercetin to arrive in the post! It's the NOW Foods brand, 400mg plus 82mg bromelain per capsule, and the recommended dosage is two capsules per day. I'll start off with one and see how I react. I had a nasty allergic reaction to lunch yesterday and am still recovering from that. Abdominal pain, intense itchiness, hives, diarrhoea, headache, joint pain, sore throat. I really wish I knew what all of this was about.

I'd suggest that first you speak to both organisations, or American equivalents, then you speak to your doctor(s), before messing around with medication.

I recommend the COB Foundation for further info on IC, and they have a forum too. Cranberry juice is for bacterial infections rather than IC last I heard, and I believe the sugar/acidity may be a problem for IC. I'd check that one out further before trying it. I'm currently investigating quercetin for (suspected) mast cell problems generally, and IC/vulvodynia in particular. My vulvodynia seems to respond to antihistamines, and quercetin acts as a natural antihistamine, so I'm hoping it will be helpful for me.

Did you speak to the migraine people and the epilepsy people? Because I still think it's odd to make a diagnosis, not to mention putting someone on this heavy a drug, based on one episode which doesn't point all that strongly to migraine. As I've said before, preventative meds are used for frequently recurring migraine, not as a first port of call.

I should probably mention that Sarah Myhill is, well, rather controversial, and personally I'm not too keen on her. But I think she has a point about hunger/low blood sugar interfering with sleep, and it's easy enough to try a late-night snack and see what happens.

I know, I just put this poll together when I'd recently joined the forum. I didn't want to include every possible condition, I wanted something simple for this particular poll. Feel free to start another one with small fibre neuropathy and so forth. Considering how rare it is, the EDS rate here is through the roof. We're now up to about a third of people here either have EDS or suspect that they do.

There's also a massive comorbidity between IC and vulvodynia (pelvic pain). My vulvodynia almost entirely vanished when I started on combination antihistamines, which is yet another reason why I suspect something is going on with my mast cells.

I think misstraci is looking at it as a migraine treatment, or possibly for epilepsy, since she has been experiencing episodes which may be a form of silent migraine or of epilepsy.

Any opinions on a quercetin/bromelain combination? Apparently it can be good for mast cell problems, and I suspect those are at the root of my issues.

Now that this poll has been up for a while, the main thing that's surprising me is that less than half the people who voted have been diagnosed with POTS or another ANS condition. And not that many more suspect they have it. I'm curious as to who that leaves over, the people who don't have POTS and don't even suspect that they have POTS. People with ME/CFS or other medical conditions with overlapping symptoms? Friends and family of people with POTS? ETA: Oops, I forgot that the percentages shown on these polls are skewy. So it's not 44%, it'e 58/70 people which is 83%. That makes so much more sense!

I think I started sleeping better on it relatively quickly, days or weeks perhaps. I never got noticeable pain relief. We kept raising the dose to see if it would help, eventually concluded that no, it wasn't helping at any dose and the side effects were problematic, so we ramped it down by 300mg per week. This is when I discovered that gabapentin withdrawal can be as bad as withdrawing from opiates or benzodiazepines. I had a horrendous time of it while withdrawing, with bad jitteriness and GI upset, but the main thing was the insomnia. This kicked in particularly badly when I finally came off the gabapentin, and it took months for my sleep to settle down to where it had been before I started. I'm on antihistamines which affect my sleep now, but I'd say that it took around 6-8 months for the effects to go away, I never got back to exactly how I was before I started the gabapentin. I also developed shaking symptoms while in gabapentin withdrawal which have never gone away, although I don't get them often. My GP says they're to do with the POTS, a vasovagal response, but I don't think she's ever seen me doing that specific type of shaking/jerking, so I don't know if she's categorising it correctly. I would be very, very cautious in using this drug.

Kava isn't alcoholic, it's a herb. If you buy the tincture of kava, it will be in alcohol, although only a tiny amount. That's true of any herbal tincture, however, and with some you only take a few drops, or a teaspoon at most. I don't know whether that's enough alcohol to cause a problem with POTS. However, kava is used as a recreational drug in some countries, and there have also been concerns about liver toxicity. This means that in some countries, it's banned. I would be more careful with sourcing kava than with other herbs due to all of this, since supply problems of this nature make it more likely that poor quality/adulterated versions would be on the market (I can't simply go to my usual brands such as Bio-Health, for instance), and would also be more cautious in taking it.

I believe that Dr Myhill doesn't talk about testing your glucose levels, just about treating the problem by how and when you eat. Read more here.

I'll ask the doctor, but she isn't interested in the mast cell side of things, I think I'll need to see the specialist before that gets looked into, so she doesn't think the antihistamines are a big deal. I'm also worried about the risk of coming off them, since I'm ill enough that sleep deprivation can cause serious risks for me, especially if I have to make two hospital trips. Did you mean to type something else instead of "fervently"? I couldn't really make sense of that bit. I discussed compression stockings with my GP and she's not going to prescribe them just yet. This is partly because they will probably just itchy like mad due to the dermographism, and partly because I'm not strong enough to put them on and take them off myself, my support workers are only in once a day right now, and apparently you shouldn't wear the stockings at night.

I still don't know exactly how histamine works with regard to POTS. I tried a couple of days off the antihistamines, and got almost no sleep and very peculiar home TTT readings. I'm not sure it's worth doing, especially since I'm already worried about the risk of collapsing when I go to hospital to get the stuff put on/taken off. (Well, maybe skip one dose the night before.) Thankfully my GP isn't relying on this test to get me referred to the specialist, so I'm less worried about it now. I assume the specialist will want me to be off the meds when she does the proper TTT testing, but then she sounds good enough to work around this sort of thing, and will know what to do about it all.

What's a 3 read hr bp cuff? Did you have a 24 hour ambulatory blood pressure test run?

My Disability Living Allowance has just come through, and to my delight, I've been put on the high rate for both. This means that I will actually have a decent amount of money coming in. So I'm interested in trying some new supplements. At the moment I'm just taking a co-enzyme B complex on top of my usual antihistamines and such. I imagine a good multivitamin would be a start (any recommendations for good vegan ones?). I have severe ME, probable POTS, and I strongly suspect a mast cell problem. What should I look at? Quercetin seemed like an interesting one to try, though I'm trying to work out the dose. I used to take Omega 3 essential fatty acids, either echium oil or algae oil: are they worth starting up again? It was always hard to tell if they were making any difference at all. I'm in the UK, which will affect what is available.

When I rang the Blood Pressure Association to ask about Holter monitors since I'd heard of them here, they said, "Oh yes, that means an ECG. No one says Holter monitor any more, it's a a very old name!" We are two nations divided by a common language, as someone or other said. I'd heard somewhere that EKG was used because ECG had already been snaffled for something else in the US, though I can't remember what. Yes, that's what I thought ECGs did. I'm not quite sure why someone mentioned BP. I didn't realise that they didn't all print out a graph, though. Surely you can't notice the whole >30bpm rise on standing unless you have a proper graph?