UnaOwen

Thank you all for your responses. Though I'm not happy that anyone deals with this issue, I'm glad to not be alone. It suddenly came about and it is a bit scary. I didn't even notice this until well after the episode, so I was taken aback for sure. A few days ago I did have an episode that was very noticable. My right foot this time, center toe went completely numb and blanched. I massaged my foot and toe for a while (maybe 4 or 5 minutes) until I got some sensation back. I then started walking around with an exaggerated gait to get all the feeling back. When it finally returned, it went right to a deep red, almost purple. It never turned blue, which I thought it would. It may be Raynaud's but I won't know that for sure until I see a doctor. Now the toe is a tad sore but the swelling went down in a day, so there's that. I've always had cold hands and cold feet, though these days (for the last couple of years) my hands will swell and turn very red. So will my feet after a warm-ish shower. I'm used to the pooling but this is really ugh. I will count my proverbial blessings where I can. I hope that it doesn't come to ulcerations. Again, my many thanks to you all! I appreciate any answers I can get and I appreciate the support as well as advice!

I get these episodes at times too. I did a little research (not WebMD and cancer search) and found that it fit more with sleep paralysis than anything else. There are three types that people can experience, one of them being the falling/suffocating sensation that you may be experiencing. If you found it difficult or not possible to open your eyes or move, you are probably experiencing sleep paralysis from time to time. I don't know if it has anything to do with dysautonomia or if it is related to any other condition associated with dysautonomia. The unfortunate part about it is that it will (of course) create a sort of sleep anxiety until it resolves on its own. On the flip side, if your heart rate is dropping while you are sleeping, it could also be an exaggerated response from the sympathetic nervous system. I reckon the only way to know for sure is to do another sleep study while it is happening again to know for sure. I'm sorry you both are going through it. You're not alone. I hope that you feel better soon and find out what's going on with the sleep disturbances. Good luck!

Thank you so much for the information! I'm working towards finding a podiatrist because I did see a dermatologist that didn't think anything of my feet. Granted, there were no chilblains at the time but everything else was present. I hope that your daughter is doing well! Thanks again for the response. Take care of you!

Hello, there to all! I hope that this message finds each of you well and safe. I know this topic has been posted before but it has been a little while so I thought I'd ask again. I recently noticed some red spots (about three, various sizes) on my second toe that were kind of tender but not exactly. I initially thought that either I smashed it and did not recall the event or it was a insect/arachnid bite of some sort. I decided to give it a couple days to see if it would heal. I'm not diabetic so that's not an issue in regards to healing. Anyhoo, making a long story longer.... I noticed that my fourth toe on the bottom was a tad tender (not painful with either, just slightly meh to the touch) and it is red, a tad swollen... almost unnoticeable but I could feel a difference when walking on it. I don't think this is a coincidence at all. I was concerned about it may be something like covid toes given the times being what they are but I have zero symptoms and I've been basically a shut in since the start. Had a couple of tests that were negative but I don't really know. I'm getting an antibody test tomorrow just to see. So, this is happening on the one foot. Cold has been my friend since the start of my permanent illness (was born with dysautonomia and compensated for years until 2016) and it is so upsetting that this is happening. This is my first time dealing with this if it is chalblains. I take care of myself, exercise every day, eat a sensible diet, take supplements, and whatnot. I do tend to stay in the cold more often than not but I didn't realize that I may have been hurting myself. Well, the neuropathy doesn't help when I can't feel every type of pain. I don't know where I am going with this, I guess I'd like to hear about your experiences and what you may do to help it. Is this something to be very concerned with as far as treatment and future issues? Do I need to start seeing a podiatrist for this? I don't even know where to start but I would love your input if you have any! I'm including some pics of the toes so if it doesn't appear that it could be chalblains, please let me know. The other foot is doing well so there's that! Again, I hope you are all doing well and that each of you are safe! Thanks again!

Hello, all! Thank you for the replies and the feedback and thanks to the OP for posting this topic. Here's a quick update. The cardiology appointment went much better than I expected and it even offered a little hope. The cardiologist was attentive and concerned... better yet, he wasn't interested in being over zealous in changing things up just yet. He's scheduled an ECHO and I will be placed on a Holter monitor for two weeks for observation. He hasn't offered an empty promises but he did say, "We have better beta blockers available than what you are currently taking and I really want to make sure that when these episodes are happening that it isn't SVT." I had a previous cardiologist that was very dismissive because my heart is actually really healthy. That doesn't change the fact that it makes everyday activity absolutely miserable. The not super cardiologist told me bluntly to "manage your expectations." I'd rather manage my condition. That's just me. Believe it or not, the visit has definitely changed my outlook on this situation more so than it has in the years since my diagnosis. Maybe I will find some answers for us all. Who knows? Again, thanks for reading and responding. I'll keep you updated and i hope you do the same for me! Take care of you!

Hey, there. I also have a severe reaction to fluoroquinolones as well as Macrobid. I've not been on steroids in a long, long time but it does have some CNS effects you may want to check out. Then again, I'm also really sensitive to medication as well, so it could very well be a flare. I hope you find some answers! Take care!

Hello, there, I've been going through something very similar. I hope that you don't mind that I share. At any rate, I also went to the hospital recently because I couldn't get my heart rate under control. I take propranolol 10mg TID to help with the tachycardia, tremors, etc. Lately, though, I've noticed that I've had a lot of break through symptoms with (of course) accelerated heart rate with standing within seconds and then my BP will shoot up. I know I have had anxiety in anticipation of the symptoms because inevitably when it happens, I get this serious sense of impending doom and I become very irrational. It's embarrassing. Yes, I've been through it several times but I'm not always sure when I should ignore what's happening. I'm not that young anymore so I cannot scoff at a squeezing sensation in my chest with a pounding heart rate.. or at least I didn't this time. Everything came back normal along with labs, ECG, CT scan, etc. Perfect, even. But the symptoms have still persisted. The practitioner suggested that it was a combination of an organic event that is competing with the anxiety of anticipation. I agree to a point. I don't know of many people in this climate that aren't experiencing anxiety to some degree or another. Whatever the case may be, it doesn't make it any less frustrating to deal with this when I've made so many boring but positive changes: exercise everyday for 30 minutes, drink only water (3 Liters) a day, mostly healthy diet, maintaining medicine on a regular schedule, etc. I just don't understand it. I also spent a good five months bed bound in 2018 and I swore to myself that I would do everything possible to get past this, somehow. I expect flares but holy moly, folks. So my question to you all is.. do you think that maybe the therapeutic window is closing as far as the beta blocker is concerned? Is that possible? It is the only real medication I take for my dysautonomia symptoms besides Meclizine for vertigo and nausea. I've noticed it hasn't been very effective either. I just don't know any more. I'm going to see a new cardiologist next week to find out what can be done. The practitioner also suggested that maybe it is time for a medication adjustment (been the same for four years) and she suggested an antianxiety drug. I haven't taken it yet. I'm still a tad skeptical but then, that may be the anxiety talking. I just worry that a new beta blocker may drop my already low resting heart rate and BP. I'm at a loss. What do you think? I wish I had more answers than questions. I can always come back and let you all know what the cardiologist suggests. He may have some insight, but I'm not so sure. Take care of yourselves in the mean time. What I can say with certainty is that you are not alone. Talk soon!