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Everything posted by Elizaangelica

  1. When I stand up straight, with my shoulders rolled back in good posture, my heart rate is about 20bpm higher than if I’m standing more hunched over. Off meds that’s around 130 vs 150bpm. I can also breathe a lot easier when hunched over. I also sit kind of crumpled for the same reason. My whole life people have said that standing up more straight will help me feel better. But it really doesn’t. Does anyone have any idea what could explain this physiologically?
  2. Sorry for two posts in a row… I’m having trouble getting my cardiologist to think outside the box with my med direction, after having limited success with Ivabradine and beta blockers. The main issue is that even when my heart rate is more controlled, the other symptoms like fatigue and brain fog are not improved. I pushed to try Modafinil, which helped a little, but had to be discontinued for unrelated issues. I keep seeing a lot of people having positive effects from ADHD meds, but he is entirely dismissive when I’ve raised it and said that they’re not indicated at all for POTS. I think he’s actually quite a good doctor, but knowledge of POTS is limited here. He’s responded well to articles before about potential medications, but I’m having trouble finding any (preferably peer-reviewed) research relating to using a wider variety of meds. Or else, at least acknowledging the relevance of treating symptoms beyond focusing on heart rate/blood pressure. In case it’s relevant I likely have HyperPOTS. Any direction greatly appreciated.
  3. I know blood pressure increase is not the way that HyperPOTS is differentiated. I’m just curious about this because my diastolic (bottom number) always increases and my systolic (upper number) always decreases when I’m standing. I definitely relate far more to the HyperPOTS experience of the condition. Hormone testing to differentiate types doesn’t seem to be considered important here. My cardio wants me to keep increasing salt, but I don’t feel like it makes any difference at all.
  4. Does non-Hyper POTS still involve the release of excessive norepinephrine when standing? My understanding was that with regular POTS the nervous system is receiving the message that there’s not enough blood going to the brain, so more Adrenalin will be released to trigger the vessels to try to constrict further. Probably repeatedly. Is that right?
  5. I’ve been on an SNRI for years (Cymbalta) for depression, ocd and anxiety, and tried several SSRIs in the past. I’ve never felt them to have a positive or negative effect on my POTS, including Adrenalin. The only thing is that I’ve had issues over the years with quite a few psych meds causing very increased overall heart rate, to the point where they have to be discontinued to try something else. I seem to be especially sensitive to that specific side effect.
  6. Thanks @Pistol I should’ve been more clear, I was diagnosed with POTS. But what does it mean to have: POTS and a failed Valsalva versus POTS with a Valsalva pass?
  7. It was a cardiologist who ordered the TTT, just to confirm his POTS diagnosis. But the hospital did the other autonomic testing too. The cardio just kind of passed over the Valsalva results, except to say it was also positive. I didn’t think to ask at the time what that actually meant. I know how the test works, but what does it actually say about my body?
  8. When I got my autonomic testing results back both the Valsalva (and TTT) was reported to be positive. But what does that actually mean? Does it cause symptoms or mean anything regarding treatment?
  9. I wonder this a lot. It’s something I’ve had to think about a lot in the past regarding my mental health (bipolar, OCD). At some point (after trialling many many combos of meds) I had to accept that maybe I wasn’t going to be able to find medications that worked any better, and the level of symptoms I had were at least somewhat better than what I’d had in the past. But the symptoms still affect me every day and limit my life. But I guess, in the most part, I’ve learned to accept that as ‘just the way it is’ when living with chronic illness. I’m less clear what level of improvement to expect (and accept) with POTS though. While I hate the thought of staying living with the level of debilitation I currently have, at least it’s better than it was before I was treated. I guess my question is what level of symptoms is ‘normal’ to live with when we have a POTS diagnosis, even when medicated?
  10. I’ve been on Cymbalta for about 3 years and have never had any side effects. It’s been the only antidepressant that helped my OCD and somewhat my depression. I’ve been trialled on many antidepressant meds over the years, with a variety of side effects, but nothing particularly dramatic regarding my POTS (though the POTS wasn’t as extreme back then anyway). Since my POTS became dramatically worse last year I’ve still been able to tolerate the Cymbalta fine, and I’m on a very high dose. It doesn’t seem to have affected the POTS either way.
  11. Thanks everyone. I feel really backed into a corner with my med options. I haven’t been able to find an ADHD med (stimulant or Strattera) that doesn’t drastically increase my heart rate. I recently went back on Modafinil, which I’d had success with before my POTS worsened, but now I can’t tolerate it either. I also have bipolar, so these type of meds always bring the risk of destabilising me 😒 This includes beta blockers (which made my POTS worse anyway). I’ve been on Ivabradine for about 7 months. It’s lowered my heart rate by about 20bpm and broke me out of a terrible flare, but it hasn’t had much of on effect otherwise, and my heart rate (resting and standing) has been creeping upwards over the months so that now, in the hours when the med should be working the best, my standing heart rate is back over 120bpm. And around 150bpm when it wears off.
  12. I haven’t been told which type of POTS I have. My blood pressure doesn’t increase on standing, though I’ve read that it’s not determined by that factor alone, and my experience is far closer to HPOTS. Anyway, I’m thinking of asking my doctor to try Guanfacine in the hope it’ll help with my POTS, but especially my ADHD and fatigue (for which I can’t find a med I can tolerate). But because I’m not sure which POTS I have, I’m concerned about it going badly. I have normal (very occasionally slightly low) blood pressure. I know Guanfacine is a heart medication for hypertension, so does anyone have trouble taking it if their blood pressure is usually normal? Anyone experience low blood pressure or increased heart rate while on it?
  13. This has been an issue for me my whole life. I don’t have other digestive issues (that I know of), so I’ve had to do some looking into why POTS could cause this. Of course I found basically nothing specific. But it makes sense to me that it could be just another symptom of our bodies not sending/receiving the correct information. Another thing is that there’s discussion of POTS causing sensory issues (poor processing). This includes the sensations that we experience inside our bodies, as well as outside.
  14. I’ve had POTS for years, but not as severe as the last 8 months. At the start of last year I was on Modafinil (Provigil) for serious concentration issues (brain fog/ADHD ?), and it did help a lot. But I seemed to need to increase the dose every 2 weeks to get the same effect, until I had to come off it because it stopped working completely after 3 months. I didn’t notice any negative effects on the POTS, though I also didn’t have the level of symptoms I have these days. I haven’t been able to tolerate any other ADHD meds without increased tachycardia, so I’m desperate to make the Modafinil workable for as long as possible. Also, I’m curious if anyone found their POTS symptoms other than brain fog/fatigue changed in any way? Is there anyone who has used Modafinil that will share their experiences? I appreciate the help, but please don’t write about other meds used for ADHD you’ve found useful- I’ve been down that road enough for now. Thanks 😊
  15. My pulse pressure when I’m standing is usually below 15. Often below 12, at which point my blood pressure machine gives up, and I can’t even find my own pulse. Blood pressure is in ‘normal’ range. I mentioned it to my GP (who also saw it) but she didn’t seem to care. I see my cardiologist this week. Has anyone ever been told anything about this issue or had it taken seriously?
  16. Thanks Pistol. I think I know what you mean. But isn’t dysautonomia a problem with the Sympathetic Nervous System? Do you mean that in our case our SNS creates similar physical symptoms to anxiety (like increased heart rate, sweating etc). Where as in anxiety the thought/event comes first, which then causes those same symptoms? But why does our SNS do this in POTS? Or is that just what POTS is (our SNS acts dysfunctionally). Someone had written that because our vessels don’t constrict correctly our body keeps releasing Adrenalin (?) to get the vessels to do the right thing, because the brain/heart knows it’s not getting the blood flow it should be. I hope I’m not asking too many questions. I think I want it clear in my head so that I can explain POTS easily to healthcare providers who don’t know of it.
  17. I’m having trouble getting a clear understanding of how anxiety works in relation to POTS. Both anxiety and POTS have been chronic conditions for me since I was a teenager (now 39). No treatment (meds or therapy) have ever been able to make a difference to my almost constant free-floating anxiety. The anxiety has always been approached as a separate ‘mental health problem’ rather than potentially a physical one being triggered by the POTS. I guess I’d like to be able to grow some greater acceptance of the anxiety, just like the other POTS symptoms, rather than feeling like I’m just ‘failing’ to make the kind of improvements through therapy/medication, like the doctors expect. Can someone please give me a clear explanation of how/why POTS can cause heightened anxiety? I’ve read about different elements, like the sympathetic nervous system and fight/flight. And about the hormones or Adrenalin (?) release in POTS. But I don’t understand how any of it fits together. Like, why does it release the chemicals? Is it linked to my blood flow? Or lack of blood to the brain? Am I literally getting stress hormone inappropriately released over and over while my body is trying to compensate? Is my sympathetic nervous system ‘broken’ by dysautonomia? POTS sure has a lot of facets that somehow fit together. But I’m very confused. I’d like to be able to clearly explain it to myself and my treatment team (who are not very knowledgeable about POTS at all).
  18. I think I can relate to what you’re experiencing. Sometimes for periods my heart rate drops well below my ‘normal’ sitting rate (about 85). I can tell when it gets close to 70 by how I feel, without even looking at my Fitbit. I feel incredibly weak and a heaviness on my chest, like someone’s sitting on it. When I was on beta blockers that lowered my heart rate into the 60s my breathing became a real effort, so severely I had to come off them. Sorry I don’t have any answers, but I think I can understand.
  19. I was diagnosed with POTS last year, though have had it for many years. Last year I had a terrible few months where for the first time my symptoms became debilitating (mostly bedridden), which finally pushed my GP to refer me to a cardiologist. I was put on Ivabradine, which helped a lot and I felt much better, but after about 2 months I’ve gone backwards again. It’s been a month of feeling terrible again now and I’m not sure what I’m meant to do. I know the pattern of POTS is that it will fluctuate. And that’s definitely been the case for me over the years. But I’m not sure if this level of severity is just part of my new normal pattern now. I’m avoiding seeing my GP about it because I know that she hadn’t heard or POTS before I was diagnosed, so it feels like she’s unlikely to know what to do. If there’s anything that even can be done. How do you know when to just ride it out or go for help?
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