Jump to content

Valentijn

Members
  • Posts

    9
  • Joined

  • Last visited

Everything posted by Valentijn

  1. POTS + exercise intolerance + the other symptoms also sounds like it might be Myalgic Encephalomyelitis (Chronic Fatigue Syndrome). ME/CFS has all of the symptoms you mentioned, though neurally mediated hypotension is probably more common than POTS, though POTS is definitely also common in ME. If that's the case, your POTS symptoms might be due to low blood volume.
  2. If it's an ME/CFS thing (it does sound exactly like a crash), then it would be triggered by exertion. If you were extra active a day or two prior to the symptoms starting, then it certainly could be ME/CFS. The problem is that the amount of activity that can be tolerated can vary from week to week, so an activity that didn't cause symptoms a month ago might be too much now. The only way to know for sure is when you do too much and it happens again. I don't recommend trying to crash deliberately :-P
  3. If I sleep on my back or right side, I feel like I can't breath after half an hour or so. But I feel fine on my left side or stomach.
  4. I have a doctor I see that is both a naturopathic doctor and a nurse practioner. He really tries to get to the underlying problems instead of trying random drugs, so I like that aspect a lot. So far I've just been prescribed supplements by him, but he can also prescribe meds if it's indicated. In my experience, and from what I've heard most NDs are like that, and are great at LISTENING to the patient, even when there's 50 symptoms or whatever, instead of shutting down and chasing patients out of the office like some MDs are wont to do.
  5. I think this statement is dangerously misleading. While activity undoubtedly is generally helpful with POTS, it also makes ME/CFS symptoms much much worse. And in some cases (mine!) results in OI also getting worse. What's the point in doing something helpful when the harm far outweighs the benefits? It's not a matter of in being "uncomfortable", but of being very sick for somewhere between a couple days and several weeks. In some cases, attempts to increase activity with ME/CFS, even when done gradually, has resulted in serious deterioration or relapses lasting years or decades.
  6. You mentioned that your BP was 106/81. Although the systolic and diastolic are each pretty normal, they're also closer together than normal, giving you a pluse pressure of 25 (106 - 81 = 25). Average pulse pressure is about 40, and the few things I've been able to find about pulse pressure indicated that 25 and under is extremely low, and not in a good way. From what I understand, it means blood isn't being circulated as effectively as it could be. I'm usually at 40 pulse pressure laying down, then often drop to the low 20's when sitting up for a while, or if I stand up. I feel pretty bad when it's that low, so it does seem meaningful. So far my record is a pulse pressure of 17 last night while standing for 10 minutes, but my BP monitor usually gives up when my pulse pressure is under 22 or so and gives errors instead.
  7. 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.
  8. 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.
  9. 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?
×
×
  • Create New...