little_blue_jay

Were you ever diagnosed with FND? How are you doing now? Do you still have the seizures?

What were your symptoms of low phosphorus? Are they still trying to find the root cause?

Nov 11th I went to my local Remembrance Day ceremony.. I had missed several years due to covid so I was very grateful to be there, but completely forgot that there would be cannonfire.. the first one startled me badly, the 2nd one I braced myself for but I was still startled.. I must mention that prior to going to the ceremony I had gone to work and worked 3 solid hours and I was FINE! (I'm a cleaner) Not one palpitation, nothing. I then went to a very crowded indoor market packed with people, then went to the ceremony. So after walking home, about a half hour after the 2 cannonfire, I began having terrible palpitations and tachycardia. Later that afternoon after enduring this for a few hours I phoned an ambulance, they hooked me to an EKG and said slight sinus arrythymia but was normal due to fluctuations in breathing, etc and nothing at all concerning, my BP was a bit high (for me) 137 over something but after lying in the ambulance it came down to 119 over something.. I did not go to the ER that day. This continued for several days and I began thinking I had caught covid again in the crowded market, as that was my first symptom the first time I caught it, extreme tachycardia. I took several home tests which were negative, and a few days later went to the ER with the palpitations and they ran their own test which was negative. All blood work was normal. The EKG they said was normal. During this time my insomnia worsened which covid had also given me this. During this time I went nearly 3 days no sleep. During covid I went up to 4 days no sleep! So I kept thinking the tests were faulty... During this time I saw my family doctor and showed him the EKG from the ambulance, and I believe he had the one from the ER, and he said there was nothing concerning, the slight arrythymia was due to breathing but he has ordered a Holter just to make sure nothing is going on but said he doesn't expect to find anything. He thinks it is a really bad POTS flare. (But WHY?) Now the last couple days its dawning on me, that I think that cannonfire did something to my nervous system or my brain or something, that it startled me into a bad POTS flare up. It all started half an hour after it! I had just worked 3 hours at my job and I was FINE! I do think that ever since covid my brain does feel super-sensitive (my doctor said the awful insomnia during covid was my brain being on high-alert for another virus) so I really think my brain just got terribly shocked by the cannons ... thing is, how to snap out of it? I keep 'talking to my brain', saying 'its ok, the noise is gone, relax, snap out of it' etc but its not working! And now, coming on here, I saw a page that I now cannot find that mentioned avoiding bright lights (always hate those anyway, I'm Asperger's) and loud noises, well I don't recall a loud noise triggering such a long flare up before! Has anyone else had a 'weeks-long' flare up from a very loud noise? If so how long did it last for you, and did anything help to alleviate it for you, or just time?

How did you "create" an attack?!

Oh yes, not just day to day, but hour by hour and sometimes minute to minute, as someone else said. I can't find a rhyme or reason to it.. it's not sleep, I've had days where I slept 6 hours and was functioning pretty well considering, and I've had days I slept 10 and a half hours and was tachy all day, spent the whole day laying calmly watching TV (funny stuff only!), and just walking to the washroom giving me palpitations or eating a tiny bit making the tachycardia worse! No rhyme or reason! It's maddening...

Yes, true, that's how I'm trying to reassure myself! Until the fears of 'long covid' creep into my fear-addled head 🥴

Yhoun, I seem to be having the adrenaline surges too. It's probably contributing to how many times I've had to visit the ER from all this, then by the time I get in the ambulance my numbers look normal. What did you find helped to cope with these adrenaline surges? Also how did you deal with the worsened palpitations? Also did you develop 'long' covid? (Hopefully not!) I can't find much on long covid in here...

I just saw these comments. How long after you recovered did the POTS symptoms start to flare up? Did your doctors give you anything for the inflammation they mentioned being related to covid? Also what specific leg and abdomen exercises did you do supine?

That's reassuring... I keep thinking this too. I should have asked my doctor about this yesterday, but I was feeling improved so I thought I'd keep trending upwards. Now I can't even call him today to tell him I've downswung again 🥴 it's like one step forward, one step back ☹

Mike, the effects of that sandwich are lasting 10+ days?! I'm wondering if you're Celiac or at least gluten-intolerant? I react badly to gluten too despite testing negative for Celiac. It makes me tachy and very thirsty and bloated. I avoid it like mad now.

Pistol, did you find that you had good days and bad days in the road to recovery? Like the HR would get better and next day worse? I had a better day yesterday, spoke to my doctor and he thought I'd 'turned the corner', and now today the HR is gone wonky again, and my doctor isn't in the office today anyway!

Thank you for sharing your experience! I do know fever will cause tachycardia. I never spiked a fever at all. The virus just seems to have concentrated on my autonomic nervous system and greatly exacerbated my tachycardia. Yesterday I had a better day, I was able to care for myself! And now so far today I've not slept well and the HR is off racing again, not as bad as several days ago, but worse than yesterday 😩 I'm wondering if I will just have good days and bad days in my recovery!?

As I explained, I was referred to a cardiologist who got me a 3 day Holter monitor which came back all normal even though it showed tachycardia. I cannot see the cardiologist for a month.

What kind of HRs were you and he getting? And how long did it take for the high HRs to resolve for each of you?

Cool! I asked you a couple other things on my thread 😊

Yes, I've heard raw veggies are harder to digest. 2-3 days in bed, wow!!! 🤯 Was this a POTS specialist who told you that?

Yes, very much so. As others said high carb meals made it worse. Although at its worst it used to happen with something as light as a small bowl of salad, at times could not even finish it.

Pistol, thank you so much for replying!! So reassuring to hear from someone else in the same scary boat! What kind of HRs were you and he getting? Also how long did it take for this to resolve with both of you?

After years of my POTS being well under control enough that I could work p-t, I believe thanks to osteopathic treatments, including riding my bike to work several times a week, beginning Jan 16th my tachycardia mysteriously got worse. Almost immediately I had to stop working. Visited ER about 4 times over the next 2 weeks. All EKGs appeared normal, except for one spike while semi-reclining in bed up to about 140. I thought it strange that lying down was not helpful with the tachycardia during these weeks. My HR felt very uneven and variable during this time as well. Also had very little appetite during this time, as well as alot of POTS symptoms like feeling wired and overstimulated were worsened. Oddly enough, I'd have the odd good day in this time where I'd be able to go for slow walks around my block. Last Sunday I developed cold symptoms of mild sore throat, stuffed nose, awakening with uncontrollable shaking and chills, very cold feet and hands, flushed face without fever, and sore muscles in my thighs. I went again to ER and was PCR tested for covid. The nurse phoned next day to tell me I'm Positive. I believe that 2 week period was the virus incubating in me. Also must mention that miraculously I was able to get a Holter monitor 3 days last week due to how many ER visits I've had. Wasn't able to see the actual cardiologist yet as he's working from home, but his assistant called yesterday and said nothing was concerning, max HR was 177, sinus rhythm whole time, will see cardiologist in about a month as he said there are many patients with more urgent issues than mine. I mentioned the POTS/covid connection and he seemed like he didn't know much about how I might treat it. I believe he actually said I'd be the first one bringing this combination of issues to the doctor. I also spoke with my family doctor over the phone Wednesday, he was reassuring in a way because he said he's got other POTS patients who acquired covid and have been to the ER every day (!!!!) And that "your case doesn't shock me at all". I have another phone appointment with him Monday as he hadn't had the results of the Holter yet and was waiting for that. He said he'd have some advice for me to cope with this. I know all about being hydrated!! Through a connection I was able to get some people-grade Ivermectin and in 3 days it has knocked out the 'cold symptoms'. The chills, stuffy nose and sore throat gone. Oddly enough, it's only in the last day or two that I'm developing the loss of sense of smell and taste, those weren't among my initial symptoms! My question is basically about this crazy tachycardia. Covid seems to know what my weak spot is, and is exacerbating it big time!! I am really afraid as I live alone. Even the one ER doctor said I can't just live in the hospital and they see nothing on EKG to admit me for. Another doctor just said it's "viral load". Has anyone else who caught covid (not from the vaccine) seen these crazy spikes in their tachycardia that are hard to control even supine??! How long will this last? Yesterday I was able to care for myself, interspersed with sitting down. And even my appetite seemed better. Today I can barely make a cup of tea or use the washroom without it spiking up crazily. I'm afraid I'll be bedridden or dead! Please tell me about your experiences with tachycardia in relation to having covid! Did any of your docs give an explanation as to the mechanism of how covid "concentrates" itself on our autonomic nervous system?

Abe, how are you doing now?

I'd better not find myself a boyfriend with POTS! With me having to remain horizontal, and him having to remain horizontal, that sure doesn't leave many options for positions

For many months now I've been noticing my shortness of breath symptoms getting so much worse for about a week before my period is due. Then within a day or perhaps two of it starting the breathing gets much better. My doctor believes me, I'm grateful for that; he must have other patients who complain of the same thing because he nodded and said 'it feels like you're suffocating' and that describes it pretty much perfectly. Every few minutes I have to take a very deep breath and sigh or it feels like I'm slowly suffocating, even at rest. I've done alot of reading about this online trying to find an explanation - I've seen that there have been studies done on this but that the researchers can't agree on a possible mechanism for it - bronchoconstriction, inflammation, mucus production, or something else. They just give recommendations for more aggressive asthma treatments. But alot of these puffers carry a warning of risk of death by using them! I do have a Ventolin puffer which I rarely use during the other 3 weeks of the month, but in the week before my period I find myself using it more, which I try to avoid as it does make me jittery. Well this past period I used it the one day and I swear I didn't feel any better with the breathing. I said this to my doctor and he writes me a scrip for Symbicort. This tells me the mechanism can't just be bronchoconstriction else the puffer would have helped a bit. I understand its gotta be a hormonal thing, an imbalance of some type, but how? Years ago I got him to run a hormone panel on me and he said everything was normal. He said those types of hormone panels usually come back normal and that probably wouldn't show anything which it didn't. I didn't have this Premenstrual Asthma issue I have now. I have tested positive for certain allergies but they don't give me the typical symptoms like itchy eyes, sneezing, runny nose, etc. I'm allergic to ragweed, grass (severe) and birch tree. I have a mild cat allergy and do have 2 cats but even my allergist said I shouldn't have to give them up if my asthma is well controlled. Everything just gets worse before my period. If it was just the cats it would be all the time. I don't feel wheezy to myself when this happens (but I'm not listening with a stethoscope either) I went and scared myself a couple months ago by reading about "Premenstrual Asthma" and found a case study of a woman who had it so bad she was hospitalized and intubated because of it!!!! If mine keeps getting a bit worse is this gonna be me in a couple years?? (I'm 39 so a few years away from menopause yet!) I asked my doctor is this dangerous and he shook his head no.. but I'm still scared. I dread my period every month, well no, I actually dread the "pre-period" SOB - starting my period makes it go away so I pray for it to start so I can breathe again! Any one else here who has anything like this? Did your doctor give any recommendations for it?

Yes if it happened when you turned your head that does sound to me like vertigo (but I'm not a doctor). I know my own symptoms (I have moderate peripheral vestibulopathy) and if I look up too fast to look at a bird or a plane or something I will feel dizzy and imbalanced, like I am tipping over backwards. It's not just a feeling, I actually do start tipping over backwards, because when I used to work the drive-thru at the coffee shop I used to work at, the order screen was way up high and we had to keep looking way up and then down to make the coffees (stupid design I know) and I couldn't do that for more than 15 minutes and I'd insist on switching spots with someone, cuz one time I caught myself starting to tip over backwards and I refused to do that spot anymore even though we were supposed to stay an hour... there was nothing to meet my skull behind me but sharp tile counter edge If it keeps happening get your doctor to send you to an otolaryngologist.

Oh wow sorry to bring up an old thread but all the replies on here describe exactly what I have been feeling like today! I've had episodes of this before, about a couple of days at a time. I hate this feeling when I'm afraid to fall asleep, I am scared I'm going to stop breathing & die. Most of the time I have a shortness of breath and am gasping for air or hyperventilating. This is the opposite, I feel like I'm underbreathing! I'm so scared! I fear sleep sometimes, I don't wanna fear sleep! Sleep is my friend! Has anyone found something that helps with this!

I've had both of those sensations and it always scared the blazes outta me! I hate them! Especially the feeling like I'm gonna stop breathing, I hate to be afraid to fall asleep! Some nights I'm just so tired but I can kinda sense when I'm going to have one of those nights where my breathing feels on the verge of stopping just as I'm falling asleep and then it takes me hours to fall asleep from it! It never wakes me up from sleep so I don't think it's sleep apnea (tried to do sleep studies twice but couldn't sleep in a strange room) but it is so scary!!! I hate the vertigo feeling too. But then again I do have something called peripheral vestibulopathy which affects my balance so at least I have a good explanation for that one! Same here! I had read about something called a "hypnic jerk" a long time ago, and thought it was a normal thing when you're about to fall asleep? It does freak me out though. I too do the loud groan noise as well! I've woken myself up with it just as I was on the verge of sleep. I'd have thought I only imagined making a groaning noise except both of my cats lifted up their heads and were looking at me all startled out of their sleep