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Everything posted by Mistri_The_Squirrel

  1. I have that in my left eye. If my eyes are closed, I can see light...kind of like what you see after a camera's flash goes off. My aunt said she has something similar (she has neurocardiogenic syncope). So I assumed it was caused by the dysautonomia.
  2. Yes. I did get some relief working with a physical therapist. She came up with several exercises for me to do that were tailored to my needs. I think I should start doing them again, actually, because my balance is still bad on some days.
  3. Yes. If I have too many good days in a row, then I must be okay now, right? Unfortunately, I can't stay well for a full month.
  4. Thank you, @Shannoncr. ❤️ I hope you are able to find some relief. It is hard enough having to deal with this. It's even harder when you are dealing with mental health problems. It's as if the doctors believe we have some sort of immunity to physical illness. I guess that's easier to swallow than the possibility that they don't know everything.
  5. I hope you will talk to your POTS specialist about this. May or may not be a good idea, and you may not know immediately if it's a bad one. Best to ask the doctor first.
  6. I do not have this problem, but my aunt has neurocardiogenic syncope and has had this problem.
  7. Some people don't have a problem with it. Others have a really hard time. I decided to be extra cautious because of my history, and tapering slowly worked well for me.
  8. My mother was told that she had osteopenia, despite the Boniva injections and supplements. (She also drinks more milk than anyone else I know.) After my dad died she had to start mowing the lawn, which meant she had to walk a lot (big yard). After doing this for awhile (in addition to the other things), she was told that she no longer had osteopenia. She credits the walking. Since many of us are unable to do a lot of walking or other weight-bearing exercises, I'm wondering if we are more likely to have bone density problems.
  9. My doctor gave me questionable advice regarding getting off the Cymbalta. I was not going to start anything immediately after getting off of it, and he wanted me to be off of it within 10 days (after having taken it for a decade). If I remember correctly, he wanted me to take one every other day, then suddenly stop taking it. It made so much more sense to me to open the caps and "bead count" to lower the dose gradually. I'm not saying I advocate going against what doctors tell you to do, I just know from years of getting on and off these meds that I was probably going to be sicker than necessary if I did what he said. And I was the one who would be suffering if I followed his advice...not him. He was probably going by what the drug manufacturer recommended, and the drug manufacturer has a vested interest in not admitting that discontinuation of their product can be problematic for some people. I get sick when I get on these meds and I get sick when I get off them. The doctors always act like it's no big deal, but they are not the ones having to go through it.
  10. I was on Cymbalta for about a decade before I switched to Pristiq. The Cymbalta wasn't doing enough for my depression and anxiety anymore. I don't even know when the neuropathy started, because I was only aware of it after I stopped taking Cymbalta. I gained about 60 lbs over the years I was on Cymbalta, which I am now losing. The Pristiq does help with my neuropathy. It doesn't take it away, but it makes it tolerable. I'm glad you posted about it though. Maybe someone who hasn't tried it will happen upon this thread and realize they need to ask their doctor about it. The only caveat I would add is that it can be a bear to discontinue. I followed the advice on the Cymbalta Withdrawal site (to taper off rather than stop abruptly) and was able to taper off of it with minimal issues.
  11. Really? That's good. Do you use one of the chain pharmacies? I use Rite Aid. Last time I checked they would let me fill my Klonopin prescription a few days early, but I don't know if that has changed. I take less than I'm prescribed, so I have a little extra and don't necessarily need to refill it in a timely manner. That's how I prefer to do things. I have extra of everything I need so that I never have to run and get something when I'm not feeling up to it.
  12. That's pretty inconvenient for people who can't always get to the pharmacy as soon as they would like. I'm sick of medications being so regulated. Not everyone is an addict looking for a fix.
  13. I just read that the government is looking to "crack down" on gabapentin like they have on opiods. I hope this is not the case, because what are people supposed to do when they have no other option? My POTS specialist is a nurse practitioner who works under a doctor who is world-renowned. I realize I'm not the most serious case they see, so maybe I don't matter as much, but I just want to know if there will be any options for the buzzing my my legs and burning in my feet if I switch from an SNRI to an SSRI, and she will not answer the question. I got a response that all SSRIs and SNRIs work for POTS, but that isn't true. Pristiq is making my POTS worse. I don't know what to do next. The last time I saw my neurologist, I was told that my problem is anxiety. But my tilt table test was positive, so...no. Who am I supposed to go to for help? These doctors are no help at all.
  14. Yes. I take baths now. After I've washed myself I shower off to rinse, but I make sure the water isn't too warm.
  15. Thanks, @Lainy!! I'm okay. Kind of tired, but okay.
  16. I wasn't too bad yesterday, until I had a pre-syncope episode when I was helping my mother move something. Then I got tired, and I'm still tired...even though I took a 4-hour nap today. How are you feeling?
  17. I think I may have overdone it today, but I remembered to drink fluids and eat. I still feel like I probably did too much though. I guess we'll see if I wind up sleeping for most of the next few days.
  18. Thanks for asking this. I could definitely use some help with this. I'm pretty sure that when I'm feverishly trying to get stuff done when I have energy, I tend to have a one-track mind. Therefore, I forget to drink as much water and take breaks for snacks. I'm sure that doesn't help.
  19. Thanks, @Abjadeya. I'm glad to hear you are being so proactive and keeping on top of your symptoms. It does sound like you might benefit from seeing a GI doctor who isn't "fed up" with you though. I've found that once a healthcare professional seems to be exasperated, they become far less helpful. It's like they shut down and write you off, and that is no good. Wondering if your dysautonomia specialist (if you have one) knows of a GI doc who would be more helpful.
  20. I was on Cymbalta for 10+ years and gained 60 lbs. I got off it last year and have lost about 40 lbs without even trying. I was actually going to post here and ask if my weight loss could be due to POTS, but it might just be from getting off the Cymbalta and being on Pristiq. (My appetite is not what it was before I started the Pristiq).
  21. Thanks, @WinterSown!! I think something like that would be helpful for me.
  22. 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.
  23. 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 they don't know what exactly is going on just from the Holter readings. It's a tool, but it has limited value.
  24. 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?
  25. Thanks, Clb75. I haven't had to, but that may be what I will have to do in the future.
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