Portland Bedhead

Cala, I'm so sorry... I totally empathize with your situation. I seem to have this experience every time I see my neuro as well, and I always leave in tears and wanting to just give up. Every day seems like a week while I'm trying to just hold on until my next appt, hopeful that my dr might be able to something to lessen my suffering and improve my quality of life (even just a tiny bit), so when they drop the ball, or simply shrug their shoulders or throw a new RX at you that makes absolutely no sense, it's more than just frustrating! I too have had a worsening of my condition and many new and alarming symptoms. I'm also on Mestinon. I finally had to call this morning and demand to be seen, as my emails stating that I suddenly am unable to walk on my own, and am having breathing and swallowiing issues didn't seem important enough to warrant a reply by my neuro for the past two weeks. BTW, I was originally given Propranolol by my neuro (a POTS specialist), which made my fatigue 100xs worse. Another dysautonomia specialist switched me to Fludro and Adderall, and it totally helped me for many months (especially with the blood pooling in my legs), but now I'm having adrenaline surges and palpitations again, and stopped taking both (on my own, since my dr never returned my calls or emails), as they certainly would have killed me to continue. I hope things get better for you!

My dysautonomia triggered gastroparesis a few years ago. When it first started, I had constant nausea, burping and cyclical vomiting episodes. But now when I have a flare, my entire digestive tract becomes paralyzed and I experience: horrible fullness (after 1-2 bites), constant severe upper abdominal pain (level 7,8,9 pain), lack of bowel sound/sensation, I stop being able to have a bm (and laxatives/enemas don't work the way they should during a flare), I can't eat solid food and can only sip small amounts of juice, sometimes for several months. I'm just getting over a flare that started on 7/6 and ended on 9/27. I lost 45lbs.

Thanks for the nudge, Hanice. I think I will. I have a tendency towards sometimes not being assertive with my drs, even when things get really bad, because I fear being labeled a 'difficult patient', but honestly, I need to speak up now and be seen asap. Thanks again.

Yep. Every day/week brings fun new groups of odd bodily sensations for me to deal with: difficulty swallowing and breathing (both 'forgetting' to breathe & a constricted feeling), heart palpitations, adrenaline surges, numbness, electrical vibrations, the air touching my skin burns, I can't tell hot from cold ... and one of the weirdest: feeling like my cell's on vibrate and I'm sitting on it. I can assure you it's not as enjoyable as it sounds.

Been trying for weeks now, Hanice. My neuro hasn't returned my email about it yet. On the cancelation list for my PCP. Every day of waiting feels like weeks...

TERRIBLE headache and stiff neck 24/7 for the past month! Nothing's helped so far, not even Norcos. But because my adrenaline surges have also started back up, I decided to get off the Florinef and Adderall to see if it helps any of my symptoms. I'm on day 2 of no meds, but so far, no change. Will be talking to my dr about looking into possible Chiari Malformation because in the past month, I've gone downhill fast and now need a walker and wheelchair.