Everyone Keeps Telling Me I Might Have Pots!

[Batik]

Greetings everyone. I've recently become aware of POTS, and it is sounding suspiciously like I might have it. I was diagnosed with ME/CFS fifteen years ago, at the age of 19, back when it was hard enough to get that diagnosis and POTS wasn't recognised. I'm severely affected by the ME, which means that I'm almost entirely housebound and have to spend most of the day in bed. I've also had migraine since I was 15, and low blood pressure for a number of years. I cannot for the life of me to get the doctors to do anything about the low blood pressure (usually around 90/50) or related symptoms, however. They just pat me on the head, metaphorically speaking, and tell me, "Aren't you lucky not to have high blood pressure - you're less likely to get a stroke!" Thanks, that's really comforting to know when I've got this quality of life and am constantly having to be cautious in case I keel over.

I've had too many incidents by now where I collapse badly, either at home or in hospital, and no one treats it as an actual problem. I collapsed when attending the dermatology clinic on Thursday (everyone online also keeps telling me it sounds like I have mastocytosis - no idea, the specialist was lousy), and I was just grateful that the nurses allowed me to lie down and got me a cup of tea. It didn't occur to me until afterwards that when a patient is almost entirely unable to move or speak, blacking out, shaking convulsively, hypothermic (well, icy cold despite seven blankets), and nauseous, that they should have got me to A&E. Horrible experience, and I've been feeling dreadful ever since, both in terms of my physical health and because this is getting scary. My health really isn't good at the moment, I'm ridiculously cold and generally quite feeble in terms of the ME, and I'm still having trouble picking up from the gallbladder surgery I had in March.

A few people have recommended the specialist Prof Julia Newton in Newcastle, but I have no idea how I could get there, both in terms of managing physically and in terms of being referred on the NHS.

The attempt at getting checked out for masto might have failed, but since they have me on anti-histamines and want to develop that school of thought, and since the main treatment for masto seems to be anti-histamines, it doesn't seem too big a deal at the moment. (If I get to Julia Newton, she sounds good enough that I could ask her about the whole mast cell/histamine business.) My GP has had me on four different antihistamines in the last few months, I'm not even quite sure why! I wasn't feeling great on the older ones, though I gather that may be tweakable, so I'm back on 10mg cetirizine. I actually went off it for a few days before seeing the dermatologist on Thurs, and I think it's one reason why I collapsed so badly - my sleep had been wrecked, for starters. I randomly tried taking an extra tablet yesterday because my legs were itchy, and while I ended up having to take a sleeping tablet again due to being awake, jittery and getting occasional shaking fits (would really like to know what's going on there. It seemed to start after I was briefly on gabapentin at the start of the year), my body temperature has actually been behaving itself since yesterday afternoon. The night before last, I was curled up trying to nap in three layers of clothing, four blankets, a winter hat, gloves and a heated rice bag on my feet. (No, despite what you've heard about Scotland, and despite the fact that we're having a really wet summer, it doesn't get that cold in August.) Last night I was able to watch a film lying on top of the duvet, wearing nothing but a thin cotton nightie and my partner draped appropriately. So I'm really curious to learn more about how histamine works and how all of this ties together. It may be a complete coincidence that I was suddenly warm enough, but if it isn't, I want to know what's going on there. Not to mention whether it's safe to double up on cetirizine like that!

[Mytwogirlsrox]

Maybe look into neurocardiogenic syncope?

[Batik]

*has a quick look* I'm having trouble telling these similar conditions apart at the moment, to be honest. Could I ask why you suggested that one in particular? I don't generally lose consciousness, as far as I can tell, although I do enter what may be described as an altered state of consciousness. Also I don't always get this from standing up, although that's a common trigger. On Thursday I was in a wheelchair when it happened, and an episode a few months ago appeared to be triggered by heavy machinery noise/vibrations near my window when I was already lying down, along with a possible post-surgical infection. On other occasions, yes, the immediate trigger has been standing up, and it hits me a few seconds later. These falls/collapses don't occur very often, they're just one of the more frightening manifestations of whatever this is. I get various symptoms, including dizziness, temperature problems and crippling fatigue, every single day. Does that help a bit with the scale of things? I haven't actually bothered to write an entire symptom list yet as it takes so long, but I can make a stab at it if that would help.

Also I still have the problem of how to get this looked into in the first place.

[issie]

I'm thinking your docs are on the right track with the mast cell idea. Are you using your H1 and H2's a couple times a day? And, are you using a mast cell stablizer - like Nasal Crom?

Issie

[jangle]

What's your heart rate standing up vs. lying down?

Apart from that a tilt table test is usually required to make/confirm a diagnosis of POTS.

[Frugalmama]

Batik, I'm sorry to hear you are going through all of this. I could have written your first paragraph - I also started with migraines, then was diagnosed with CFS, and also misdiagnosed with Celiac Disease and then with IBS. Although I had minor bouts before, I started experiencing constant orthostatic intolerance during my second pregnancy five years ago. Over the past eight months, though, I started looking at mast cell issues, and just last month was diagnosed with indolent systemic mastocytosis. The hope is that with proper meds, my POTS symptoms will also diminish (almost every person with mast cell issues has some degree of POTS). Here's a link to a great forum....http://mastcelldisorders.wallack.us/yabb/YaBB.pl. Since you are symptomatic at times other than when you are standing, I'd really encourage you to explore mastocytosis/mast cell activation syndrome more thoroughly. Dr. Afrin, one of the mast cell experts in the US, said in a lecture last year that he sees a lot of patients misdiagnosed with primary POTS, but upon careful investigation they experience symptoms other than when they are standing. I also have major reactions from vibrations, cannot regulate my body temperature, and am exhausted nearly constantly (I may only have a few minutes of reprieve every day). It's important to figure this out for a couple of reasons (aside from the obvious ones of feeling better!) - one of the first treatments for POTS is a beta blocker, which mast cell folks are not supposed to have. Also, lots of POTs doc recommend lots of exercise, which can cause anaphylaxis in people with mast cell issues. I've come to realize that I may not have true POTS, but rather have an anaphylactoid reactions every time I stand (or crouch, or lift anything heavy, etc). Please check out the forum I linked to - there's lots of info on testing, diagnosis, medications,etc.

[Batik]

I don't think I have a hope of getting diagnosed with mast cell problems, unfortunately. I agree that it's looking likely, and people on the internet in various places have been telling me that I sound like I have it for a while now. When I went to the dermatologist, she looked at the brown lesions I have all over my abdomen, called in a thoroughly unimpressive colleague of hers to double-check (condescending prat in a bow-tie), told me that they were a type of wart, and that was the end of the matter. No skin biopsy, and now I don't think I have any means of getting one. (To anyone thinking that I should just go to another doctor, I'm afraid that's not how it works on the NHS.) She sounded quite convincing, but then managed to lose credibility by telling me that dermagraphism (which I have been diagnosed with) doesn't cause itching, and quite apart from all the sources on the internet contradicting her, the dermatologist who originally diagnosed me with dermo talked about how it causes itching! I can't get my GP to refer me again, because my GP has been getting odd recently, and flatly refused to refer me because of the lesions, kept on telling me they were either freckles or skin tags. I only managed to get a diagnosis in the first place by pointing out that the dermographism and eczema aren't being helped by medication.

Issie - does that answer your question? My doctors aren't looking into mast cell problems, sadly. I've only been put on one antihistamine at a time, although the dermatologist said she wanted to increase that so that I was on more than one at once. I've been doubling up on the cetirizine out of sheer desperation, and without consulting my doctor.

I'm still not sure what anaphylaxis with mastocytosis involves, but I don't think I get that.

So do people with POTS never get symptoms apart from when they stand, then?

By the sound of it, whatever's going on with me, it's more than one thing, which doesn't surprise me in the least.

Jangle - hard to tell, I'm not quite sure at what point I should be pouncing on my heart rate when I stand up, since the dizziness usually hits me a few seconds later. Plus my blood pressure cuff is possibly too big for me, takes time to inflate and so forth. I read recently that Julia Newton, the specialist I'm interested in, says that a blood pressure cuff isn't a good way of measuring heart rate. Anyway, when I took it this way the other day, I was getting an increase of about 20 when I stood up, though I may not have been catching it at the right moment. My blood pressure was going up too, which is odd, I think in the past it's fallen, but perhaps I didn't wait long enough for it to fall. I've never managed to do a poor man's tilt table test successfully, I can't stand still for more than a minute even if I lean against the wardrobe, and of course the act of taking my blood pressure nullifies the test. Possibly I should try again with a support worker to press the button and record the results, if people think it would be worth it. My heart rate is usually in the 70s. When I've messed around with testing this before, my BP was varying more than my HR, but the other day my HR was varying a certain amount as well. To be honest, when I'm really dizzy, I'm not up to messing around with taking my BP, so it's probably deceptively good.

[Frugalmama]

Hi again! The only skin manifestation I have is flushing (and before being on all the anithistamines, I would off and on get burning and/or itchy skin) - but no spots whatsoever. You should try an immunologist - they can test your tryptase, n-Methylhistamine, etc. and go from there. One thing you can try if you tolerate it is Benadryl - if your symptoms are relieved when you take it, there's a very good chance that mast cells are the culprit.

Anaphylaxis can look different in each patient, but mine typically follows the pattern of: extreme weakness, fatigue and flushing, then awful abdominal pain, nausea, ridiculous diarrhea and sometimes vomiting, also headache, chest pain, tremulousness, tachycardia, mucous running down my throat, pre-syncope, etc. at this point I know I'm headed downwards, and I use liquid Benadryl (although I've now been advised to use my epipen). At this point my BP drops at least 30 points, and I have a period of "forced sleep" (i.e. I am unable to stay awak) for at least two hours. Please note that I don't experience ANY hives or distinct swelling - although it is the most common manifestation of anaphylaxis, it is not necessarily present .

[jangle]

For me my maximum heart rate is reached after about 3 minutes of standing still. Usually I won't get the tachycardia immediately, (although sometimes I do) but it gradually builds over time. The key is to stand still, if you flex your legs or muscles it will lower your HR.

Everyone is different though, but as a general rule you should take your HR probably after 5 minutes of standing still.

[Batik]

Frugalmama - hmm, quite a lot of that sounds very familiar. I don't have the opportunity of seeing an immunologist, though. With the NHS, you have to convince your GP to refer you to any specialists, and if they haven't heard of the condition you think you may have and are not interested in learning about it, that's it.

Jangle - 5 min, right. If it's not a daft question, how do you keep yourself from moving while you're standing up? Last time I tried, I stood against the wardrobe, and even then I noticed myself flexing my hands after twenty seconds and gave up after a minute or two.

[Batik]

Next question: what degree of blood pressure variation is considered normal, and what is considered way off normal? When I've tried to discuss my blood pressure variation with a doctor, I've been told that it's normal for blood pressure to go up and down a bit during the course of the day. And I'm sure it is, but I'm not sure mine falls within normal levels of fluctuation. I'm having trouble googling blood pressure variation to find the normal daily stuff, but so far there's this article which talks about a variation of +/-14.2 systolic, +/- 8.8 diastolic for normotensive Japanese subjects, and a smaller variation for people being treated for hypertension. Another study for women in America found a somewhat smaller range of variation.

My blood pressure today has varied by 23 systolic and 20 diastolic. If I look at the readings I've taken in August, then the variation is 27 diastolic and 22 diastolic. For Feb and April, the other time I kept on testing, I get a range of 77 systolic and 61 diastolic, although that's based on one particularly high reading that was 30ish above all the others (167/103, 51bpm). I'm not counting all the times I got error readings, as I've only just been made aware that they were probably due to a diastolic number below 40 and didn't log them at the time. I assume that the +/- business with the study means that I should double their numbers to get the full range (as in 14.2 above and 14.2 below the average gives a range of 28.4), which gives a range of 28.4 range systolic and 17.6 diastolic. So I'm a little outside that for this month, and hugely outside it for the spring. Plus this isn't based on ambulatory screening, so my true variations could be greater than I know. My HR over this period has ranged from 66 to 103, including taking a reading after walking about for a minute, and is usually in the 70s when taken while relatively inactive (e.g. sitting at the laptop). My average BP for the year is 107/62, which is a bit higher than I thought, but then it's the low numbers which have been sticking in my mind. I usually take my blood pressure while sitting on the bed or lying in it, sometimes after attempting to stand up (wobbily) for a few min, and almost never during or after activity, or during or after a dizzy spell.

[HyperPOTS8]

Variations you describe--20 pts systolic and diastolic are wnl, usually a bit less on the diastolic. Mine ranges from 70/50 to 190/120, that's not normal.

[Batik]

Good lord, no, that isn't!

With this update, I have new and exciting measurements. The lowest I've had today has been 97/62. I tried taking my BP a few min after finishing supper, while sitting at the laptop, and it had gone up to 140/111, 84. I kept taking it for the next 16 min and it dropped to 104/68, then settled at around 112/67, 80. Then I tried standing up. The reading just after standing and moving the laptop table over to the wardrobe I was leaning against was 110/77, 100, and after 5 min of trying not to tense my leg muscles, it was 114/84, 103. Then I sat down again. So my heart rate went up quite fast, and quite possibly got higher than that but there's a limit to what I can tell when it's just me trying to work it out. (I think I read somewhere that Prof Julia Newton uses a fingertip method of pulse monitoring during testing, as this type apparently isn't nearly accurate enough.) And while the systolic pressure stayed the same, the diastolic pressure went up, which means that my pulse pressure dropped from 48 to 30. My HR has generally been a bit higher than usual today, and I'm wondering whether that's anything to do with bumping up the antihistamines.

I might curl up in bed, watch an episode of something while trying not to wriggle about, check my BP at the end of that, then stand up and see if I can keep upright for longer this time.

[Batik]

More observations from today: I really can't manage standing dead still for more than a couple of minutes (and probably am doing a bad job at that), but during that time my HR is going up at least 24, and my pulse pressure drops dramatically. I've had two pulse pressure readings of 23 today.

I'm trying to take things gently in terms of getting this investigated by my GP, so at present I've sent her a letter explaining how bad my autonomic symptoms really are, and asking for a 24 hour blood pressure ambulatory test, which they've muttered about in the past. Do the 24 tests tend to work out well for people with these sorts of problems, or do they miss out on stuff? With my current sets of readings, I may be trying to target certain moments, but even so there's enough weirdness going on that I'd hope they'd flag something up. I've been fobbed off so many times that I'm worried that I'll be told yet again that there's nothing worth investigating.

[Batik]

Further update: two days ago I collapsed again, quite badly. This time I had someone with me who had sense, my support team leader, so she called an ambulance and my partner, and I ended up spending 4 hours in A&E. They noted in the ambulance that I was tachycardic, but the doctors at the hospital were neither interested in that nor in the blood pressure problem I was reporting (I'd been testing it that morning). Apparently 109/90 is a perfectly healthy blood pressure - none of them seemed to have heard of pulse pressure. They were mainly interested in the fever, and ran a variety of tests, including an ECG and a chest x-ray. Eventually they diagnosed a UTI and gave me some antibiotics. They had no idea why I was jerking convulsively, except to say that it didn't look like epileptic convulsing. Note to self: do not say "Much better, thanks," when doctors ask you how you are. At least, not when your definition of "much better" is, "I can't turn over without getting breathless and I black out when I stand up or even sit up, but at least I'm not breathless the rest of the time or shaking like crazy!" I think they figured it out when I used the commode before leaving and went through all the usual shenanigans from getting up, including about 20 minutes of jerking.

I don't know what's normal with a UTI, but I don't think this level of collapse is. So hopefully when I go to my GP and say, "Look how much I'm collapsing," they won't just pass it off as the UTI and refuse to investigate.

Probably rather foolishly, I did another poor man's TTT just now. This time I went from lying propped up to standing in a corner; the other times have all been from sitting to standing. I tried not to fidget but I couldn't prevent myself from tensing my leg and buttock muscles, as otherwise I wouldn't have been able to stand. I'm wondering if that's why it took a while for the HR to peak?

Lying down, propped up on pillows - 101/60, 66

After standing 7 min - 107/79, 85

After standing 15 min - 112/79, 99

There's less of a variation in BP there than I've been getting, but the HR increase was 33. The machine usually beeps for each heartbeat from about halfway through, and normally that's regular. Today it was wildly irregular. I have no idea what that means, although the middle of a UTI is possibly a bad time to be checking anyway.