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Hippopotsamus

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Everything posted by Hippopotsamus

  1. @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).
  2. @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?
  3. 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.
  4. 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?
  5. @p8d & @Sushi thanks for the info about helpful NPs, I’ll expand my search to include them too!
  6. @Pistol, your wisdom is invaluable as always. Thanks for taking the time to respond.
  7. 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 f
  8. 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
  9. 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 s
  10. 2 weeks ago I switched from a smartphone to an old school "dumb phone" that just calls and texts, so no internet, email, or small screen scrolling. The quality of my sleep has improved dramatically and I would say that my anxiety has decreased by half, and this is the only thing I have changed. I wanted to pass this along in case it could help anyone else.
  11. @Shepard1 Interesting that you say it was 3 months till your symptoms hit. It was also about 3 months between my flu shot and my first “dysautonomia type episode”. Went to ER for POTS attack with the HR up and down/hot then chills/teeth chattering stuff. Never had it before that, they thought I was just dehydrated (yup!) and IV fluids resolved it. I am pro-vaccination too, but I think some people are predisposed to dysautonomia then something triggers it. Growing up I had episodes of lightheadedness after standing and in the shower but that was it.
  12. Can u please send to me too? Especially if in MA. Thanks!
  13. I just quit hormonal birth control and started the non-hormone IUD a couple months ago. I felt some hormone fluctuations the first 2 months, much heavier periods, my skin breaks out more, and I’m more emotional, but I feel like my POTS is a little better. My heart rate has been more normal and I feel less chest pressure which is hard to describe. Anxiety maybe a little worse? I always felt like birth control evened out my emotions tho.
  14. Feeling like crap no matter what you eat is miserable. The fear about what kind of reaction your body is going to have is such a huge source of stress too. I definitely understand. I think that histamine has been a large trigger for my symptoms as well. You might look into DNRS? I’m using it to work on my food intolerances, a lot of other people have had success with it? People who were down to 5 “safe foods”. I used to be down to about 10 when I was at my worst. And I was sensitive to food temperature, volume, too much protein/fat at once at one point too. I also had bad pots episodes after s
  15. Thanks everybody for your responses. I have been hesitant to get one (got shot every year before developing POTS, but since my diagnosis have felt like I’m generally more sensitive to things, have had abnormal responses to things I used to tolerate), but I might be brave and get one. I work in a pharmacy and have sick people coughing on me all day! And I got the flu last year. It was two weeks of awfulness.
  16. The first period that I had after switching was pretty heavy, but I just had my 3rd period, and it’s getting lighter. I was quick to jump on the pill bandwagon too after giving birth (I developed POTS during pregnancy), and was worried that my period might make my symptoms worse. But I feel so much better without the hormones. I wasn’t expecting that.
  17. Hello, I wondered if anyone else saw improvement after stopping hormonal birth control? I just switched to the non-hormonal IUD and my Fitbit has my daily resting HR down about 8-10 points. It goes lower when I’m sleeping (into the 50s) and I’m not in the yellow (fat burn) range as often doing normal activities.
  18. @WinterSown thanks for sharing about milk working as a helpful electrolyte solution. I used to drink it all the time growing up but for some reason had stopped. When I started drinking 2-3 glasses a day again I started to notice a reduction in my fatigue and headaches that I wasn’t getting with the Nuun tablets.
  19. Anyone get an intense ache in their tongue or palate that came and went? It also feels like my jaw seems fatigued easily. I started having this in June when I was under a lot of stress moving and picked up a viral infection. It went away and now is back in Sept since I picked up a cold from the kids. It is not constant, sometimes more intense after eating, sometimes happens even if I haven’t eaten. Feels like a cramp along the sides of my tongue that follows it down my neck. But some days it is just awful. My PCP wondered if it was an allergy but it happens on/off antihistamines, no matter wha
  20. @JoeJack101 Yes the DVDs take some time to get through. But all of the information really helps you get a grasp of what has happened to your body, how neuroplasicity works, how you can actually affect your brain chemistry to heal your body. Even after the DVDs you continue learning as you begin practicing, and from the experience of others on the community forum. Part of me thinks that there are many aspects of modern life that make us more prone to developing dysautonomia, chronic illness that primitive people did not have? A good question.
  21. Hello. I was wondering if anyone else had issues with this or has found something to help it. I have POTS and often feel panic after eating. I have never had a textbook anaphylactic reaction to anything (no throat closing, severe rashes, facial or tongue swelling) although I have had shortness of breath and chest tightness after eating. I have had all negative IGE blood tests. But I have become very nervous about eating. I avoid all alcohol and caffeine and cut back on sugar and carbs. Any suggestions appreciated. I currently take metoprolol, Claritin and Zantac. (Thought I would try the mast
  22. @Bluebonnet08 I did improve in some aspects pretty quickly after delivery, I remember being surprised 7 days postpartum that I was able to walk around a hospital cafeteria and take a shower standing up. Previously I was only able to walk very short distances and pretty much avoided showering because i got too dizzy. In the few weeks after delivery I forced myself to go for walks around the block, and it was sooo hard and uncomfortable (breathing felt so strange, constant headaches) but I knew I was really deconditioned by that point and it was the only way I was going to see improvement. Then
  23. @Bluebonnet08 My first attack ever happened at 21 weeks with my second pregnancy. Then around 28 weeks they began to happen weekly, then daily with presyncope and orthostatic intolerance by 32 weeks. From 32 weeks until 38 weeks was the worst for me, I think compounded by anxiety because I had no idea what was happening, no previous history of POTS. I think I remember them slowing down near the end. I could not figure out what triggered them because sometimes they were after eating and other times in the middle of the night or early am.
  24. I have tried it and noticed a pretty significant reduction in symptoms very quickly (within a few weeks) when I was able to commit to practicing the techniques every day. Better sleep, more energy, better HR, more positive thinking, overall just better than I have felt in a long time. I felt like it helped me start to climb out of the hole that I feel like I fell into with POTS. But the hard part is you have to stick with it, and I have 2 small kids and am in the middle of a move so getting time set aside every day has been almost impossible. I do recommend the program very much and I do hope
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