Does anyone have long covid fainting with orthostatic hypotension

I can only imagine how alarming this must be, and at the same time, it strikes me that orthostatic hypotension is, in some people, a marker for dysautonomia, or dysregulation of the autonomic nervous system. In other threads, I have been posting about my own journey of discovering that my post-COVID syndrome seems to mirror or form exacerbated versions of various conditions I´ve had since childhood. I then remembered that a cousin of mine has POTS (a form of orthostatic hypotension), which is typically classified as a form of dysautonomia. Then I began to see writings about long COVID closely resembling, in some patients, the syndromes associated with dysautonomia. When I clustered my lifetime of troublesome disorders, I could link every one of them to research findings supporting that all of my health problems, to date, have been seen across the population of patients diagnosed with dysautonomia (and my biggest tip-off, in this, was my acquired mitral valve prolapse). From there, I discovered that there is whole body of fascinating research and writing by the late Dr. Derrick Lonsdale of the Cleveland Clinic, regarding the unmistakable connection between chronic acute and subacute thiamine deficiency and dysautonomia. So I have embarked on a long-term program based on thiamine supplementation, and while itś early days, still, I have new hope now. I imagine that your doctor(s) have explored all possible cardiovascular features of your new hypotension and made sure that there aren´t findings unrelated to possible dysautonomia, when I share all this. . .But if the origin of the hypotension is mysterious, please consider delving into the literature available today on dysautonomia and how many people experiencing this get better. The type of doctor who tends to recognize and treat dysautonomia is often working in the field of Functional Medicine or Mitochondrial Medicine, btw. Please have hope. Itś possible that you can and will get past all this.

HI..thanks so much for your reply. When I first started going to Mayo after having Covid for the first time in December 2021, Dr. Van thought I might have had POTS but my insurance would not pay for the tilt table test. So the fainting continues to be an issue. I have a heart monitor on and I wear that for two weeks. This is scary, as the last two incidents of fainting have resulted in injuries. How much Thyiamen do you take? I am willing to try anything. No one has ever brought that up before. I am open to any suggestions you have because I fear fainting and falling again. Thanks for your reply. I live in Minnesota so how can I find a functional Medicine provider? Thanks again..Sincerely kitty2

You can check this by having someone check your BP laying down, then sit up, check it and repeat standing up.If you have an automatic BP cuff you could do it yourself.

I deduce that you are still being evaluated for a primarily cardiovascular cause of the fainting, as you are on a heart monitor right now, but I imagine that your doctor will still not rule out possible POTS as at least a contributing additional cause, short of your being able to confirm this diagnosis via tilt-table testing. Therefore I wonder how your doctor would feel about your undertaking B1 supplementation as something that could support both heart health AND possible dysautonomia/POTS? Traditional MDs are often not comfortable suggesting even famously nontoxic supplements unless they can perceive of these as providing a pharmaceutical-style benefit, but my own internist is an example of an MD who welcomes any harmless supplement, so long as it is not used to substitute for proper testing and pharmaceutical prescriptions. I am thinking that you might get the best insights into how B1 is being used in POTS/dysautonomia patients from this: https://www.standinguptopots.org/nutritionalimbalances#:~:text=Vitamin%20B1%20(thiamin)%3A%20Thiamin,and%20dramatic%20improvement%20in%20POTS. And if you want to see some specific protocols for B1 supplementation when itś used to address a wide range of other conditions, possibly check into the online materials of Eric Overton (EONutrition), a UK naturopath who holds a certificate in the practice of Functional Medicine -- a certificate unavailable in the U.S. that is nonetheless apparently available to non-MDs in the UK who work in this area.

I do not have POTS but I do have dysautomia. I have never fainted but I would experience some dizziness on standing at times. I also would experience episodes of extreme fatigue as if I had done some high intensity activity for a long duration. I never put the two together until I took the tilt-table test. After returning home from taking the test, I felt that same fatigue. On a couple occasions of experiencing dizziness when standing (after taking the test), I then checked my blood pressure. It was low for me. Not medically scary low but apparently enough of a low for me for my body to have a negative reaction. I now take Pyridostigmine Br 60mg twice a day and that controls those symptoms.

Hi..what is Pyridostigmine BR?.. what did they find from you having the tilt table test..was it worth it..my insurance would not pay for it..they said it was not medically necessary, but had they done it they may have saved thousands in medical billsand lots of headaches for me. Thanks..kitty2

Hello Kitty! 🐱
I hope this is not the case for you, but in case it does apply to anyone having fainting spells - it could be a seizure. One way to rule it out is to talk to your doc about it. I was already a patient at a Long Covid clinic when I had a seizure at home. I lost consciousness and woke up on the floor, in an ambulance, and again in the hospital. The ER doc said “you had a seizure”. I told him “I don’t get seizures”. He said “Yes you do - you just had one - here take this” - he handed me a pill and said “you’re going to be on this for the rest of your life”. I started a thread on this Mayo forum https://connect.mayoclinic.org/discussion/seizures-and-epilepsy-diagnosis-after-covid/ called “Seizures and Epilepsy Diagnosis After Covid”. I feel many doctors and clinics are failing to make the Covid-Seizure connection, and it is under-reported. Studies show up to 1 in 100 people that have had Covid may develop seizures. There are pills that will stop the seizures, but it has to be diagnosed first. Keep asking your doctors questions, and I wish you good health.

I can’t say any more than what the research says as I’m not in the medical field, but it has helped it.

“It’s possible. Doctors may prescribe Mestinon off-label* for conditions such as:
postural orthostatic tachycardia syndrome (POTS), a sudden increase in heart rate when you stand up that often causes dizziness
orthostatic hypotension, a drop in blood pressure when you stand or sit up that may cause dizziness”

Thankfully my insurance did cover the tilt-table test for me. Taking the test, the dr finding an issue and getting treatment has helped quite a bit. But it was only only a part of my issues.

I have heard that there are tilt table tests that can be done in dr offices. Maybe research that and see if that is an option for you. It was a rheumatologist who sent me to a cardiologist requesting tilt table test. My first cardiologist didn’t want to do a tilt table test since I wasn’t actually fainting. Another dr referred me to a cardiologist who has been dealing with long covid patients. He was willing to do the test. Good luck to you.