Pots, Something Else, Or Both?

[Valentijn]

I have had ME/CFS for about a year now, and have developed problems with orthostatic intolerance. Initially my OI symptoms manifested as light-headedness and feeling very crappy after I'd been standing for 15-20 minutes, such as when doing grocery shopping. It steadily got worse, until I could only handle 5 minutes or less.

Typically my pulse pressure would get narrow, and my blood pressure seemed to drop when I measured it while standing up for a while. My pulse rate didn't change much from standing up. This seemed to indicate Neurally Mediated Hypotension, which is pretty common with ME/CFS.

But about two weeks ago, I had a very odd episode which I think might have signalled a transition into POTS. I had been standing up for 10 minutes (too long), and was startled by seeing my fiance in the window as he came home. I didn't have the typical adrenaline response, however.

15 minutes later I suddenly felt really awful. I felt like I couldn't control my legs well enough to keep standing, and same with my arms for holding a bowl of food. My throat felt tight/rigid, but not swollen. I was able to breath fine, and I was also sweating (something I never do usually). I didn't feel any better after sitting down, and had to lay down. After laying down I started panting and I wasn't able to sit up again for the rest of the evening without feeling awful. Getting to the bathroom was quite scary due to instability.

I continued feeling the same for the next 4 days. On the fourth day, I went to the doctor and she couldn't get my pulse or blood pressure on my left arm after 2 attempts, but a nurse taking it on my right arm got a reading of 135/75, although she said my pulse was very weak/soft. The doctor was not concerned that I frequently have a pulse pressure in the low 20's, and said a pulse pressure of 20 is completely normal. She sent me for blood tests, including electrolytes, the typical blood stuff, liver function, etc, that all came back normal.

The next day I was able to sit up again (with my feet up), for up to an hour at a time, though I'd then be feeling quite bad and have to lay down again without being able to think clearly. The rigid feeling in my throat continued to occur. But taking my blood pressure has given different results in the past week. Sometimes my pulse now rises 20-30+ beats per minute, and I have a narrow pulse pressure less frequently.

Here are some readings I took tonight (systolic/diastolic, pulse (position):

6:00 - 123/100, 111 (standing)

6:05 - 131/ 87, 92 (sitting)

6:10 - 123/ 86, 82 (sitting)

6:15 - 131/ 86, 80 (sitting)

6:15 - 115/ 85, 78 (lying)

6:20 - 118/ 80, 77 (lying)

6:25 - 118/ 94, 95 (standing)

6:30 - 114/ 97, 84 (standing)

I wasn't able to get any additional readings due to getting an ERROR message, probably due to too many missed heartbeats. The rigid-throat feeling was only present during the first reading, when I also had a rapid pulse, so I'm wondering if that symptom was a POTS thing, and if it sounds like I have POTS and/or something else going on. Any thoughts?

[Lemons2lemonade]

Sorry you are having a rough time This sounds A lot like my first pots attack. My blood pressure was high and my pulse was high. Maybe you have pots, maybe you don't. I have read that if normal people get dehydrated then they can have feelings like pots. I am wondering if maybe you were dehydrated and this set the whole thing off? I do have pots, and drinking water always makes me feel better. You should ask your doc if increasing water is right for you?

[Valentijn]

I already drink plenty of water, and have also been taking electrolytes lately. Sometimes I do have episodes where I'm very thirsty and urinating a lot (with normal blood glucose) when my light-headedness is getting worse, but haven't had that happen in the past couple weeks.

[corina]

Hi Valentijn, welcome to the forum! Sorry you have reason to be here, but since you have I hope you'll find answers to your questions.

When I want to know what bp/hr do I usually start measuring while seated, then stand up and measure every minute for 10 minutes. It gives me a good indication of what is going on and it always gets along with how I feel. I am doing better now (since starting octreotide) but my usual pattern in hr and bp was: normal when seated (unless too long) then bp dropping on standing while hr climbed.

I haven't been officially diagnosed with cfs/me but suspected to have that as well. I'm not quite sure though, I think there might be something else causing the (extreme) fatigue.

[corina]

Btw Valentijn, I noticed you're from the Netherlands. I'm from the Netherlands too, so if you need any advice on doctors or want a chat in your first language, feel free to pm me!

Take care,

Corina

[Valentijn]

Heh, thanks for the welcome :-) I'm an American living in the Netherlands with my Dutch fiance for about 19 months, and only got about halfway to fluent before I got sick.

I think the big indicator for ME/CFS is post-exertional malaise (PEM) ... getting very sick a day or so after exertion, and that lasts at least a couple days (sometimes weeks). Initially that was a much bigger problem for me than orthostatic intolerance, but I can still have a PEM "crash" while laying down, so it's definitely more than "just" the OI. But the OI is a lot more disabling for me currently, and if I had to choose between keeping the OI or the PEM, I'd rather have the PEM!

Actually, in my case PEM episodes are often what triggers a worsening of OI. If I'm too "active", I crash and start urinating too much, and the OI gets worse at the same time. The crash ends and the OI gets a bit better, but never quite back to the same level I was at prior to the most recent crash. And my tolerance for what I can do before I crash is constantly decreasing ... the last crash came from laying down in a relaxation therapists office and tensing a few muscles briefly as part of the relaxation therapy.

So I get a little freaked out by things constantly getting worse and not having a simple way to stop it happening except by avoiding activity as much as possible. And even that might not be enough - my latest OI problems weren't triggered by PEM. Hopefully it's just a flu or something.

My ME/CFS specialist is trying to deal with it, but the neurologist she sent me to chased me out of his office after about three minutes. Next on her list is sending me to a vascular prevention poli clinic, then an ENT (KNO) poli clinic, then (finally) an orthostatic specialist in Amsterdam. But I don't expect the vascular or ENT clinics to be particularly helpful, and at the current rate of appointments it'll be at least 6 months before I get to the orthostatic specialist. It feels like an eternity while I'm watching things get worse.

[corina]

Oh, Valentijn, it must have been your (screen)name that made me think you were Dutch, sorry!

I'm sorry you're having such a bad time right now. I'm glad your doctor made a plan for you to find out what's causing your problems but having to wait 6 months to be admitted in Amsterdam is quite a long time, esp as your getting worse. Maybe you could talk to your doctor and ask if s/he can get you in sooner?