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About Amyschi

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  1. Hi Lisa. Just wondering if you are using an elevated wedge or bed, or just using pillows to elevate? I have cervical arthritis/stenosis and note I have to be very careful in the positioning of my neck or will have the same symptoms. It actually is quite a trick because I also have severe acid rreflux and, for that reason, also have to be elevated. What I have found is to use a very low-profile pillow (like one inch) so that the neck isn't flexed at all. Do you have underlying neck issues? If unknown, maybe something you want to check , as if you just started to notice the headaches and dizziness along with a stiff neck, the new position may definitely be contributory. I also have chronic dizziness for many years, and as the neck worsened, so did the dizziness and dysautonomia symptoms. Also, I know they say to lie elevated to conserve volume, but interestingly, I have found the opposite to be true; increased need to urinate at night. All I can figure is that it's the more "upright" position. Go figure! Hope you can work it out, and good luck.
  2. Thanks so much. Interesting. So glad you are doing better with this. Can I ask why you are taking the prednisone?
  3. TY for your reply above, MTR. I didn't realize the lip biopsy could be dangerous, but with so many issues going on, I can certainly understand that. So sorry you have had so many obstacles along the way, but I admire your very good attitude and willingness to keep trying different things to improve over the years. I was interested in your comment just above about the move theater seats reclining, as I am confused on this aspect. I really have noticed the nocturia, which I never used to have, when I started sleeping on an incline due to acid reflux. I can't figure this out, as I thought I read they encourage those with dysautonomia to sleep that way to prevent fluid loss and subsequent dehydration in the morning? Interesting what Pistol and you have said about the Paleo diet too - may be worth trying. I hope your infection improves so you can take a shot again with the Lexapro - - I've read that Lexapro is one of the easiest ones to tolerate.
  4. Just wondering if you, or anyone, breathes through their mouth when they feel like this? Odd question, I know. I notice when I am more symptomatic HR wise and generally more weak, that I will be breathing with my mouth open and don't even realize it until it completely dries out, so I am doing it involuntarily. This is only while I am sitting or laying upright though. Maybe it has something to do with blood flow and oxygen levels? I have tested O2 sats during this, though, out of curiosity, and not generally low.
  5. So sorry, Ida. I agree that if you are unable to sit up, it sounds like you do certainly need and deserve some help. I have a husband fortunately, but he is gone 90% of the time, and I have often thought that I wish I had an extra bedroom where I could offer maybe the right person free room and board in exchange for just being around some of the time. In addition to your friend who is coming by and maybe more additional arranged help, as others have said, would that be something that is possible for you, if that is even something you would want to consider? Best wishes to you.
  6. Hi MTR, I just came across your posts to this point, as I just posted a similar question today and happened to see yours. Sorry for all you are going through, but it is amazing, as we could be twins. The only thing different is, instead of sweats, I get severe chills for hours down my arms and legs with an inability to get warm. I just wanted to mention, and all are probably aware of this, that I read you can often have negative antibodies to the Sjrogren's; that the only definitive way to diagnosis it is through a lip biopsy. I suspect you are younger than I (at 60), so it is a little scarier as one gets older, blaming everything on the dysautonomia, and I can relate the fear and wondering whether to go to ER only because you feel so bad. Since we are so similar, I was wondering if you also notice severe weakness with almost an inability to get out of bed when this happens, and also do you have urinary frequency? Oddly, I have just started to notice this symptom. Again, what to blame on the dysauto. I admire you and everyone for trying the different medications. Good luck, and maybe post back if you find the Lexapro helps this crazy circle of symptoms. TY.
  7. Thank you, Kaci, for explaining, and best wishes.
  8. Hi Kaci, Wondering the same, I've read that Gatorade Zero is the best, but I think I was meant to see your post today, as had a very bad night. I see you have hyperPOTS, I believe I have the same, and I am wondering what you mean by "spinal shocks?" Are they like myoclonic jerks? I am glad for the Gatorade tip at night. Can I ask if you (or anyone), especially those with neuropathy, wake up with internal shaking, anxiety, tachycardia both lying in bed and especially upon getting up to use the BR, and severe burning/paresthesias in arms and legs, and severe chills. I get this in "attack,s," not every night, and it will last throughout most of the following day. Was so bad last night that honestly think I must be sick, or there is something else going on. If anyone else has these attacks, would appreciate knowing. TY.
  9. Thanks for this good basic recipe - you are right, so much easier on the stomach, I think, than sure salt tablets, as it's diluted. Hope they bring the Zantac back soon!
  10. Also, can I ask what electrolyte drink you use that you can tolerate with the GI issues? TY.
  11. Thanks - yes, too bad the Zantac was withdrawn if that was controlling things for you. Hopefully they will bring it back or maybe you can switch to another H2? I'm surprised if you never had to use a PPI? I've read that the H2 blockers become ineffective after a few weeks? Maybe you took it just during flares? Appreciate your insight.
  12. Thank you for this insight, Random! I agree. Since I've been in a severe stomach flare, POTS symptoms/weakness are much worse. Even increases palpitations and dizziness, just a continuous cycle. Can I ask how you treat your GERD? TY,.
  13. Thank you so much for this info, Pistol! I appreciate knowing what has worked for you. I think it is related to the dysautonomia too. I was just reading something about "chronic abdominal pain syndrome," which they are calling a functional GI problem due to brain hypersensitivy, something akin to fibromyalgia. Interesting. Also similar to "functional dyspepsia." It probably all goes back to the nervous system. So glad you are doing better on your regimen. I am going to need to get on this, I know, even with the side effects. It just is not possible to treat it when it is that severe without intervention. Take care!
  14. So sorry so many have GI issues. Most of you talk of nausea, but I wonder if anyone has extreme burning stomach and GERD symptoms. Sometimes I wonder too if this dyspepsia is related to dysautonomia or just a separate GI condition. I tend to think everything is related maybe too often too, but I was diagnosed with GERD after dysautonomia. IIn any case, if anyone has this, do you have anything that has worked for you? I have tried it all, ginger, chamomile, antacids, and have tried H2 blockers, but they make me even more dizzy and worsen tachycardia (hard to believe, I know, as most people tolerate these just fine), but I have a separate chronic vestibular condition, and any meds seem to worsen the dizziness, so kind of up the creek there, but am getting kind of desperate, as it has worsened to the point where I am having trouble eating, and am very thin. Any suggestions at all appreciated. I know I need to return to my GI doctor. Thank you.
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