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Everything posted by Mistri_The_Squirrel

  1. Thanks, @WinterSown!! I think something like that would be helpful for me.
  2. I am on a med that can cause hyponatremia (low sodium) and have found that I don't have strong palpitations very often now that I supplement with salt and electrolyte drinks. I don't know if that's what you need, but those things have helped me...so I just thought I'd throw it out there.
  3. I was told my Holter was fine, except for the palpitations. I was told to drink Gatorade and keep myself hydrated. That was before my tilt. I was not told that my tachycardia was abnormal. But I think they had either ordered the tilt already or were thinking of doing it, so maybe they just didn't feel it necessary to go down that road yet, figuring they would know more after the tilt...? I don't know. I'm just saying that you can have POTS and be told your Holter is normal. They don't see exactly what you are doing when your tachycardia is occurring (or what your BP is doing), so th
  4. Yes!! People in my family have told me for years that I should wear earplugs to sleep like they do, but the pressure hurts! What headphones do you have that you like?
  5. Thanks, Clb75. I haven't had to, but that may be what I will have to do in the future.
  6. I don't know that I would feel heard if there was no interaction with others. I think I would still feel like I'm talking to the wind. If I can get on a working antidepressant, I will be able to deal with trolls. I just can't do it when I'm feeling fragile. I felt like I could take on the world when I was on 50 mg of Pristiq. Unfortunately, I had to go down to 25 mg because Pristiq aggravates my heart rate and BP problems. I need to get on something else, but that's another problem for another thread.
  7. I know what you mean. I feel like putting in earplugs sometimes, but that only makes the ringing in my ears louder. I've also noticed that strong tastes and smells can be too much for me as well. Someone mentioned the birds. I hate the sound of the birds chirping right next to my window. And the sound of lawn mowers. Those are probably the sounds I hate most during the spring and summer. In the winter it's the snow throwers (or even just the sound of people shoveling), and the squealing sound a belt on a car makes when it needs to be changed.
  8. Does anyone have neuropathy and take an antidepressant? If so, does it help your neuropathy at all? My current antidepressant is an SNRI and helps with neuropathy somewhat. But I need to change meds, and my next med may not be an SNRI. I'm also wondering what could be done about my neuropathy if I start an antidepressant that doesn't help with that. Any help would be greatly appreciated, as my POTS nurse practitioner is not answering my questions, and my psychiatrist is basically just a drug vendor. Thanks in advance. --Mistri
  9. Thanks, @WinterSown. I have thought about blogging or starting a YouTube channel. I just don't know if I can deal with all the trolls. Recently I have been watching one of my favorite YouTubers get torn down in the comments sections of her videos...over makeup. And she's such a sweet person. Trolls go after her because they know she is sensitive and they can get to her. I don't want to make myself vulnerable and get torn down like she does. I just don't think I can handle it right now.
  10. I have a longstanding history of depression and anxiety. It was hard to get doctors to take me seriously when I was looking for my POTS diagnosis, but I kept pushing. Most seemed eager to write my symptoms off as anxiety. But I have over 30 years of experience with anxiety; I knew it wasn't anxiety. I wound up keeping the weirder symptoms to myself and telling them only about the things I thought they could measure or see, because I knew they wouldn't believe me if I told them everything. Even my POTS specialist doesn't believe that I had a weird reaction to mestinon (feeling drugge
  11. Pristiq (desvenlafaxine). I know that's probably not your issue, but I wanted to put it here in case someone happens upon this thread and is on Pristiq. I've also noticed that even decaf coffee can be a problem for me. I miss coffee.
  12. Thanks, @Pistol!! That is one I will check into as well. I wonder if doctors actually read the books their patients bring them. I think maybe my primary care doc would, but not sure about that. I highly doubt my family members would take it upon themselves to read any of the books either. Kind of a bummer.
  13. Oh @Steven, you have no idea what a nerd I am. I definitely appreciate a good academic read. Admittedly, brain fog makes it a little harder to concentrate on what I'm reading than it used to be (and clinical depression doesn't help). However, books that have been written for the general consumer often leave out some of the information. It would be ideal to have an easy read as well as something more detailed for when I'm feeling studious. Thank you so much for the suggestions. I am in the U.S., so it should be easier to obtain one or more of those books than it is for you. I'm
  14. I tend to be the same way with meds; I have a hard time tolerating the standard dose of some meds. Not sure why that is, but others in my family say the same thing.
  15. What are your recommendations? I was just diagnosed in December, so I still don't know very much about my POTS, but I would like to learn more. Which books have you found most helpful? Thanks in advance. --Mistri
  16. That's really weird. I've noticed my hands wrinkle up pretty quickly when I'm bathing and I was wondering why. I used to be able to almost get through my shower or bath before that would happen, and now it happens within the first 5 or so minutes. I'm pretty sure my sodium levels are out of whack though--due to a medication I'm on--so I guess that's why.
  17. Hi, @songcanary!! I just saw this. Was this for me? I actually have a little 5 gallon tank I was keeping a betta in. She died though, so the tank is running with no fish in it right now. I think a big part of what was soothing to me about keeping fish was the fact that I was problem-solving on all of my tanks each day. There were always levels to measure, plants to prune, algae to scrape, etc. It was something I got hooked on when I worked in pet stores. I worked at an aquarium store for 4 years, and I loved that job. I got to do what I like to do, and lawyers and doctor
  18. Welcome, @vjester94!! I tend to cycle through a similar set of symptoms each day. Each day I take my temp and it's fine. The fatigue hasn't been as bad since I corrected my vitamin D deficiency. And I don't get much in the way of chest pain, but I used to get alarmingly-strong palpitations before I upped my salt intake. I have gotten better at staying hydrated, salted and getting some physical activity in, and that has helped....for now. I hope you will stay and check out the site. I haven't been here long, but I've learned quite a bit. And it helps to talk to people who un
  19. Have you gone above 30 mg? I hear most people take 60 mg three times daily for POTS...or that is the goal, at least. I read one of Dr. Grubb's studies about it, and only 51% of the people who could tolerate the side effects found it helpful. So I guess it's a coin toss.
  20. I was just thinking about this last night, because I sometimes wake up feeling like I'm going to pass out. Led me to wonder if it's possible to "pass out" while you're sleeping. The idea of passing out while you're sleeping sounds absurd, and it also sounds absurd that a so-called "postural" problem could lead to this while lying down...but as soon as I saw the title of this thread I thought, "yes!!" Not sure precisely why this happens, but I get it too.
  21. I had one for a few weeks last year. It was annoying, and the electrode pad adhesive irritated my skin, even though I don't have any known skin allergies. After it was over with, someone online told me they have pads for sensitive skin, so that's something to ask about if you feel the need. I could take off the pads and bathe, then put a new set on when I got out and re-connect the leads. It was not a big deal, just kind of a pain.
  22. Thank you for answering!! I am still wondering what the deal is with me. Judging by the reaction of my nurse practitioner's office--along with the lack of similar experiences reported here--I figured it wasn't a typical POTS response. Many of my family members say they are sensitive to medications, but I have an aunt who says she is sensitive to meds and she did not feel drugged when she was put on Mestinon. So I don't know what to think. I was encouraged when you said that wore off. You're still on Mestinon then? If so, is it helping you?
  23. Oh, yeah...I don't talk to my sister anymore. Along with my POTS, I'm dealing with some pretty severe anxiety and depression. And I know my antidepressant (Pristiq) is aggravating my POTS symptoms, but the degree of anxiety and depression I have is too great to abandon the medication. (I do have to talk to my psychiatrist about some sort of change in the medication, but he is on vacation for another 10 days and has no one on call for him. ) I had to go down to 25 mg because of my POTS, and 25 mg is not enough to keep me functional. I can honestly say that the depression and anxiety have be
  24. That would be my sister. According to her, I'm a burden (even though she hasn't done a thing to help me, so I'm not sure why she thinks she has a right to offer her opinion). I'm thankful that my mother was in the room when I had my tilt. If she hadn't been, I doubt she would believe that there is anything physically wrong with me. My mother has been really supportive lately, and it has surprised me. Neither of us speak to my sister much because of the way my sister criticizes us about things that aren't her business. Last week my sister sent me a series of text messages te
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