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MomtoGiuliana

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Everything posted by MomtoGiuliana

  1. So sorry, I have had that issue in the past and it is very scary, and does warrant an ER trip if severe. I also had the experience of being in the same hospital where I was told I had severe anxiety, years later, and staff actually were aware of POTS. Unfortunately I do not think ER staff are routinely informed--for example--to test orthostatics when symptoms and and other testing warrant, and also that most patients w POTS who come in feeling very poorly would benefit from IV saline before being sent home. But hopefully we are moving in the right direction with awareness in the general medical community!
  2. I've been starting to get hot flashes./sweating episodes. It doesn't happen during the day, for me. It happens just when I am going to bed and winding down (or trying to). However the feeling in your stomach does not sound like menopause.
  3. I have found that some drs don't really grasp the variety of significant orthostatic changes we experience. They tend to think POTS=low bp along with the elevated hr on standing. This is true for some of us, but I also have pretty high bp on standing when I am in a flare. I would also for that reason be afraid to try any medication that would raise my bp during a flare. Has this dr seen your orthostatics--were you diagnosed with a TTT? Can you take some measurements of your bp at home sitting and standing and report these to him? I do know of at least one member in the past here who suffered a stroke while taking a medication that increased her bp. I think it is a rational concern.
  4. Altitude sickness can happen to anyone if they go suddenly from a low altitude to a high altitude. Going from sea level to 10,000 ft would be pretty taxing on the body. I think any change in elevation that exceeds 6,500 ft can cause symptoms. Some people might barely notice it and others could need a few days to adapt. There is probably a POTS connection. I have been at 10,000 ft or higher twice since being diagnosed with POTS. The first time I was totally disabled for a day or two (at 12,000 ft from sea level), but then started to feel much better. The 2nd time I had a horrible headache which was relieved as soon as we got back down to around 7,000 ft. It's important to hydrate and rest for a couple of days if you notice symptoms from what I understand.
  5. I also have pain with POTS relapses. I have read that POTS patients are more sensitive to pain. I get aching, burning and other sensations much like what MTRJ75 described. I also get headaches that don't respond to OTC pain relief. Last relapse I had severe kidney pain that was unable to be explained despite extensive testing.
  6. So sorry. I have also had severe crashes every two or so years. No identifiable trigger. Between the crashes I feel pretty well. I agree that is is amazing one can feel this poorly and have something benign. IV fluids are the only thing that helps, and only bc it keeps me from having to lie down constantly. I've never had elevated d-dimer that I am aware of. The only thing that gets out of whack for me is potassium goes a bit low. Sometimes magnesium too. And this is despite eating and drinking--no vomiting or diarrhea.
  7. Sorry you are feeling badly. Is this an evaluation for disability--or do you mean you are seeing a dr for diagnosis. Are you seeing a specialist in autonomic dysfunction? Have you been diagnosed? In my experience w doctors it can help to have someone with you who can back you up--say they have observed you feeling poorly, this is not normal for you, etc. It can help to have a log of symptoms, or anyway symptoms written down so you make sure you provide all information to the dr. If the doctor does feel your diagnosis is psychiatric they should refer you to an appropriate physician for diagnosis. Hopefully misdiagnosis of POTS for depression/anxiety is not as common as it was 20 and more years ago.
  8. I have had insomnia during flare ups, and also I generally have insomnia from time to time that has worsened into my 40s. I found that regular bed time, especially regular time of getting up/out of bed, is essential. I can sleep in one day until 830 AM and the next evening I am wide awake and cannot sleep. I have also found the method of sleep restriction (which extends beyond just getting out of bed at the same time each AM) helps when I get stuck in a rut of poor sleep. You can find information about this elsewhere, but basically the idea is that you purposely stay up and out of bed and slowly increase the amount of time in bed (still getting up at same time each AM). It has worked very well for me to get me back on track to more normal sleep.
  9. I get saline infusions during flare ups--2-3 times per week at an infusion center. It has helped a lot. My specialist has ordered them. Also my general practitioner has order them. When I am in a bad flare up it doesn't make me highly functional again but it gets me well enough that I am not lying down most of the time. And I think that is so important bc lying down a lot will exacerbate orthostatic intolerance and it becomes a negative feedback loop--at least for me that is the case.
  10. Mine worsens during flare ups.
  11. My blood pressure goes up when I am in a flare. Increasing fluids paradoxically brings my bp down. I do also increase my beta blocker as that helps bring both my hr and my bp down a little.
  12. I had a very similar experience. I think bringing in a psychologist can be helpful. They are the expert most qualified to come to a conclusion about mental health and it can help a physician consider other explanations.
  13. Yes, I get sensations like that--a feeling like adrenaline in my limbs followed by weakness. Increasing fluids generally helps relieve some of this.
  14. Welcome to the forum. There have been topics in the past discussing specialists in Australia. If you do not get an answer to your post, you could try a search in past topics. Here is one: Do you have experience with autonomic testing or autonomic specialists in Australia? - Dysautonomia Discussion - Dysautonomia Information Network (DINET) We do have a physicians list (see menu at top of page) but it may not be helpful for you as I don't think it lists many specialists in Australia atm.
  15. Yes this seems to be quite a common experience among POTS patients to feel worse in the AM and better at night. It's been my experience too. When I am in a flare I cannot shower in the AM--I have to shower at night. I think some of it has to do with hydration status. We tend to be a bit dehydrated in the AM and it takes some time to replenish fluids. But I remember a doctor telling me is probably also has to do with diurnal changes in cortisol levels.
  16. I just had my 2nd dose of Moderna a week ago. In the first 24-48 hours I had a temp of 101 deg F, body aches, dizziness and fatigue. This improved rapidly in the 2nd day. I did not have residual POTS symptoms. However 4 days after the shot I developed GI pain and severe diarrhea. I don't know if this was a reaction to the shot or coincidence. That has now resolved. I feel like I am not quite back to my "baseline" but I think that is due to the GI upset and not sure what caused it.
  17. I agree with Pistol they should have given you fluids, and you would have been justified to return. I'm wondering if you have been able to try IV fluids as a treatment. I hope you reported this driver to Uber. That is a terrible experience.
  18. So very sorry for all you are going through right now. It's a huge stressor when a serious relationship ends. I've seen quite a few patients on the forum have symptom improvement as they got older. So you may very well see improvement in time.
  19. Family can be hardest on us and most hurtful --they speak their minds candidly in situations where most would not, and maybe without thinking. I don't have personal experience with a port but many on the forum do and someone with experience will likely respond. But IMO as long as it is safe for you for the port to be exposed I don't feel you are under any obligation to cover it in public unless you want to. I think in our culture we often want to cover up signs of illness and it's not mentally healthy to be in denial or secretive. Hope you feel better soon.
  20. This condition does seem to affect each person in a somewhat unique way. And in families some are only mildly impaired and others significantly.
  21. Interesting about caffeine reducing cerebral blood flow--maybe not everyone with POTS is affected that way. But I believe that I am and this is the first I have heard this. I actually get increased orthostatic symptoms after drinking anything w caffeine or eating chocolate. It never occurred to me this was something documented in other people!
  22. This study seems to be looking at patients taking a medication to suppress immune system. It may be relevant for some of us but not others.
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