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Everything posted by Hippopotsamus

  1. Hope you and your family are feeling better soon!
  2. @Pistol, I can identify with the high adrenaline. I remember telling my mom in the summers that when I didn’t have any school stress that I just didn’t feel well. I felt a lot better physically when very busy. Then in my 20s worked very high stress job and was very comfortable with it mentally but my body just kept declining till it broke.
  3. Hi everyone, I just wondered looking back how many of you had mild orthostatic symptoms as a child/teenager, then went on to develop more severe autonomic dysfunction/POTS as an adult. I recall many episodes of “visual snow” that looked like a static tv screen filling my vision that would remain until I sat down, often when standing very still or in warm places. Sometimes accompanied by muffled hearing or pounding heart. When I developed POTS in my 30s (stress+virus+pregnancy) the decompensation was severe and my autonomic nervous system went totally bonkers but looking back I now think that I was predisposed to this, and was like a time bomb waiting for a trigger. Anyone else?
  4. I have had episodes like this with my teeth chattering so hard I thought I was going to break a tooth. They are rare but awful!
  5. Yup! I get this if I have been stationary for a while and then get up and move around. I always thought it is just another symptom related to the blood pooling and not getting to my lungs fast enough. SOB from lack of perfusion.
  6. @CallieAndToby22 I also have interstitial cystitis and have had better luck with any of the electrolyte powders that come in the powder packets (that don’t have the effervescence) like SOS or Liquid IV. I used to drink Nuun daily and it kills me now, the acid and the carbonation. I was hesitant to try something else but was pleasantly surprised that I only had the mildest urinary symptoms with the liquid IV in several flavors: guava, watermelon, açaí berry or the watermelon SOS.
  7. I had a flare with the flu shot last year, lasted about 3 weeks. I got Moderna in Jan & Feb and each time had flare that lasted less than 48 hours. I got Covid in March 2020 and am not back to baseline. Keep having relapses every couple months.
  8. @Pistol - thank you for your thoughtful response. I have been so hesitant to try something new out of fear that it could make things worse (what if I have a reaction and can’t take care of my kids or go to work) but then I consider my metoprolol and how much I put up a fight about restarting that but then, hey!-I can stand up for more than 2 minutes, I can manage to walk around the grocery store without my lights going dim and worrying about going down in the aisle, I can do laundry without pushing 140bpm. What if a medication could make it so I don’t feel like I’m plugged into an outlet constantly? Or help so I don’t feel flulike & hungover and angry from cleaning up the playroom? Ugh. I think I’m ready.
  9. Hi folks, I am wondering which SSRI or SNRI you are taking and which specific symptoms they improve for you. My beta blocker controls my heart rate so I can stand up/work/cook, etc. I am functional but still very uncomfortable on a daily basis. I still really struggle with post-exertional fatigue (and after activity the excess adrenaline impacts my mood-anger/compulsiveness/inattention/irritability/dissociation/neurosis). I only feel this way after overdoing activity, particularly cleaning and to a lesser degree with the hormone shifts at certain points of my cycle. Any advice? Medication? More hydration? Yoga? Meditation? What helps you with this?? I don’t know whether to blame it on brain hypoperfusion, excess adrenaline, inflammation or serotonin deficiency but I’m finally starting to accept that maybe I can’t fix this on my own out of sheer effort. There is an actual problem that medication could help to make it so I don’t have to fight so hard while continuing to crash and burn. I have a good support system and am a glass half full person in general so this direct effect that POTS seems to have on my behavior has been troubling me.
  10. Hello! Where I live is pretty cold right now and I’m missing having tea like the good old days before I had POTS. I have to strictly avoid caffeine, and do ok with decaf green tea (even the decaf black tea triggers some symptoms for me). I was wondering if anyone out there has a warm drink that helps with symptoms instead of making them worse?
  11. Had first Moderna shot 2 weeks ago and finally feel like I am back to my pre-shot baseline. I was very tired day 1, aches on days 2-3, worse POTS/neuro symptoms days 4-6, then more fatigue for a week. I had POTS pre-Covid with minimal symptoms then got Covid in March 2020, been recovering ever since, POTS + long Covid.
  12. Anyone tried the Apollo Neuro band? It is supposed to improve SNS/PANS balance and increase HRV. My HRV is always garbage which makes sense, as I always feel like I’m stuck in fight/flight with the POTS adrenaline. Just wondering if anyone had experience with it.
  13. Thanks @cmep37 I can relate to the “enormous energy” required to make it stop. Relaxation exercises can sometimes fix it but I do feel like sometimes I don’t have the strength to concentrate or my mind is just racing and I’m half asleep so I’m just stuck anxious and aggravated and shaking!
  14. Thanks @POTSius & @Pistol, I haven’t tried adding heat, will see if it helps! Hate how episodes throw off my sleep and make me tired and achy all the next day.
  15. Anyone else have this? Or insight into why this happens? If I wake up in the middle of the night to walk to the bathroom to urinate then lay back down in bed, I start shaking. Looks like intense chills but I’m not really cold. Sometimes accompanied by headache/anxiety. I’m conscious and do not feel faint. Blood sugar fine. HR and BP ok. Is this from the arousal of my nervous system from sleep? Blood volume/electrolyte stuff? Just wondering if I’m the only one.
  16. @Pistol thanks for sharing that hopeful info! I think all of the research they are doing with regard to immunity and “autoantibodies” in particular is going to be key to solving the POTS puzzle.I got the double whammy of having POTS and “Long-Covid” so I have been following the support group research threads and this is going to be the laser focus of new research- autoantibodies, the mast-cell histamine connection... because so many are developing dysautonomia and ME post-Covid they can’t ignore it any longer. Way too many young people going to need vast healthcare resources they were not planning for unless they figure it out.
  17. @Abe I hope you find relief too! I used to get this feeling to a lesser degree In my 20s before I developed full blown dysautonomia in my thirties. I could take lorazepam 0.25-0.5 mg once or twice and it was like it reset my system and I would feel better for months. Once I had POTS I tried it again and had complete opposite reaction- it was like my body had a panic attack (lightheaded, tachy, extreme dry mouth).
  18. @Pistol & @Delta thanks for your responses! I’m currently on metoprolol ER 12.5mg daily and it helps me with tolerating activity but still I buzz! I never feel like my body is calm (even if my mind is). I was wondering about bupropion, because the SSRIs don’t agree with me. Had an episode after 5 days on sertraline with HR all over the place and hot flashes. CBD and alcohol are out. I am very med sensitive. Pistol, what dose and form helped you? There is IR, SR, and XR. Are you med sensitive too?
  19. Has anyone found a medication that takes away the buzzing feeling? I feel like I’m plugged into an electrical outlet most of the time.
  20. So I have a follow up question. How much salt helps you & how do you get it? I have seen the range of 2-10 grams! I am not sure where in that range I should fall (and I‘m likely not getting enough because I’m so symptomatic right now?) I have tried liberally salting food, Nuun electrolyte tabs for my water, and SaltSticks (the saltsticks give me a really “yucky” head/chest/belly sensation about 15 minutes after I take them that passes after a couple minutes so they are not my favorite even though they are convenient.) What do you aim for each day for salt/water that helps you?
  21. @p8d & @Sushi thanks for the info about helpful NPs, I’ll expand my search to include them too!
  22. @Pistol, your wisdom is invaluable as always. Thanks for taking the time to respond.
  23. Hello, I was hoping to get some suggestions. After discussing my recent exacerbation of POTS and autonomic symptoms (orthostatic intolerance, shaking spells, pre-syncope, fatigue, weakness, shortness of breath) after having Covid with my primary care doc, she has once again dismissed my difficulties as anxiety and tried to push me into mental health treatment and starting an SSRI (which I tried before at her suggestion but that put me in the ER for crazy HR and flashes of burning sensations all over my body, I think she forgot. She doesn’t believe my medication sensitivity either). I’m fed up. Her specialty is dermatology by the way. I tried to explain that my issues are neurologic and not psychiatric. Has anyone else been able to find a PCP that believes in autonomic disorders? How did you find them? I live on Boston’s North Shore and am so done with this one.
  24. I wanted to share my experience. I am recovering from presumed Covid infection. I was hospitalized for 4 nights for shortness of breath. Tested negative (however MDs believe it was a false negative- up to 30% tests may be false negatives I was told). I was off all POTS meds and was only struggling with some daily fatigue before infection but this brought back all of my symptoms full blown. It has been about 4 and a half weeks since the hospitalization. First 3 weeks were real struggle. It’s hard to feel so sick and have to be isolated. Thankful for having an area of my house I could quarantine and a nice husband who would slide food in the door and run. And for a sense of peace and strength that I can only say that God provided. But I have been off all inhalers for a week now, breathing much better, and able to sleep without being totally propped up anymore. But man this thing throws your nervous system for a loop. I am still very limited, can’t stand for more than a couple minutes, activity is miserable. But seeing small improvements week to week. So as scary as all of this is, and as frustrating as these setbacks are, I wanted to encourage anyone else out there who gets infected that recovery might be slow but each week better than the last in small ways. I’m an “essential worker” and a bit worried about my job status/future if it takes me a couple months to get back on my feet (literally). Also in the past when I first got POTS and had so many totally bizarre and scary symptoms I remembered that it felt so strange that the world around me was still the same but I was struggling so much. This time with my recovery it feels like everyone is dealing with something strange and uncertain too. I just hope and pray that I can get to a level of functionality that I can take care of my kids & spouse if he ever became ill. It just blows my mind that so many people can be infected and never develop or only have mild symptoms. We live in a relatively densely populated area of the US and hoping to see some plateau or decline in cases soon.
  25. After developing full blown POTS during a second pregnancy (and realizing afterward I had been experiencing dysautonomia symptoms for years without having a name for it, and that I was the third generation of females in my family to experience these symptoms), I am still glad that I have my children. Pregnancy was hard and so was the first year post-partum. I think if I had gone into it knowing what my diagnosis was, I would have known how to manage it better and taken it easier and probably been less anxious during the whole thing. If you have a good support system and can keep your overall stress low so that your body can heal, it is doable. I had to learn to lean on my faith when my strength was low and my anxiety was high, and some days were really bad. But 3 years after I only have orthostatic symptoms when sick or stressed, and am off of medication. I can parent just fine, and the experience has taught us to slow down and live more intentionally as a family.
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