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Is POTS reversible?

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Posted 6/6/2020 9:37 PM (GMT -5)
Has anyone here recovered, or know anyone who has recovered from POTS? My doc seems to think most of my worst psych symptoms are POTS. I think I'm looking for some hopeful stories because if my derealization is from POTS I want to believe its reversible.
Posted 6/6/2020 10:49 PM (GMT -5)
This does not answer your question, unfortunately, but just gives you one doctor’s opinion.

I mentioned to Blakeley’s Lyme doctor wondering if she could have POTS. (In the very beginning of learning about Lyme diagnosis). I asked if we needed to go to a doctor specializing in POTS and she stated that there’s a reason for it and that there’s something that’s causing it, so you treat the cause and it should clear up.

Whether that is accurate or not, I dont know, but I’ve often thought about if we should be treating the POTS symptoms.
Posted 6/6/2020 11:49 PM (GMT -5)
what is your bp resting vs standing? how bad is the heart taching to compensate? does it race while resting ? or even while sleeping ? ..
when bart and lyme helped enlarge my heart and shrink my microvasculature it got bad bad after a sulfa vasculitis incident. after much rocephin , rife and venom and im working out digging ditches painting houses and building motorcycles . the right bundle branch block seems to be better to ...no2 production was at its lowest when gut bacteria was eliminated. large amounts of l.planterium .goat yogurt and kombucha seemed to "reinflate" my vessels(flat elevator button finger tips and deep indents with regular socks , dizzy spells,etc etc) ya its a process 1 yr heart tx burrascano style + 2 yrs gut work and im able to play guitar standing now so keep at it.. licorice raw sticks help to get groceries and stuff its close to aldosterone. also hong kong had an inhaled aldosterone my llmd threatened to put me on?! idk theres access with all the coronabalonie . keep us posted
Posted 6/7/2020 5:54 AM (GMT -5)
about 25% of patients with POTS get better by restoring Vitamin B1 levels. about 47% of patients with POTS have a deficiency of Vitamin B12. Fifty six percent of POTS patients have very low Vitamin D levels. High Vitamin C levels reduced incidence of oxidative stress in POTS patients and reduced syncope. There is also a study that says a gluten sensitivity disorder is related to POTS.

A good first step in treatment involves increasing water and sodium intake and try to exercise some. That tends to stabilize the neurotransmitters.
Posted 6/7/2020 6:33 AM (GMT -5)
POTS 100% can be reversed, but it takes time.

It’s caused by damage to the thinly/unmyelinated c-fibers that control autonomic function. These fibers continually regrow. The sensory nerves in the skin are also unmyelinated c-fibers, hence the reason a lot of people w POTS also get SFN. The reason I mention the SFN part is because it’s the same type of nerve, thus we can make inferences from how one heals to the other. Dr K did a study and showed that after administration of IVIG (in those who responded), on a repeat nerve biopsy of the ankle it took anywhere from 6m to 4y for the nerves to regrow back to normal density. He believes they repopulate by repairing nerves that haven’t died, and re-sprouting new branches off the ones that survived. He says the only time this doesn’t happen is if there is too much damage done to the point where the nerve axon is dead, such as often happens in diabetic and chemo-induced neuropathy. In autoimmune cases it’s typically the proteins on the periphery which are attacked, not the axon, which is good because it means then nerve can survive assuming the assault doesn’t go on ad infinitum.

Point being, if your problem is autoimmune, and it most likely is, and you can handle the autoimmune issue, you will most likely recover.

I found this to be a good link for discussing POTS and the causes

https://franklincardiovascular.com/contact/

In addition check out the FB dysautonomia group and ask if anyone had recovered, I’m sure you’ll get plenty of positive replies.

Post Edited (dcd2103) : 6/7/2020 5:42:58 AM (GMT-6)

Posted 6/7/2020 7:57 AM (GMT -5)
Yes, people absolutely recover from POTS and associated forms of dysautonomia. I like to use the term "dysautonomia" here, since as you know the tachycardia is not the only issue.

Salt (non-iodized, and 1-2 teaspoons per day) can be really helpful. Consume the correct amount of water, and don't make the mistake of thinking that more is better. Too much hydration messes up your electrolytes, which I learned the hard way, and which was a major impediment to managing POTS for me.

Have you tried the leg exercises? Or compression stockings? Both shunt blood back to your upper body from your legs. There are meds, too, but the dysautonomia specialists I have seen tell me that they work no better than placebo. (Which is to say that they do work somewhat, just maybe aren't worth the expense and risk of side effects.)

POTS happens to a lot of people after a bad virus, and of course other types of infections as well. My sister and niece both had it for a couple of months following a "COVID-like illness" in January. So it is a lasting effect of an infection - current or past - so it's likely to resolve on its own.

But! You can do things to help it move along. Take good care of your nervous system. Lion's mane mushroom, magnesium, CBD, and other nervous system supplements can help. Acupuncture, chiropractic, craniosacral therapy, and other bodywork can help. Practices such as qi gong, yoga, DNRS, and meditation can help. Essential oils and earthing can help.

Is your MCAS well-controlled lately? POTS and derealization can go with that, too, as I'm sure you have noticed. MCAS can be tough to manage fully when airborne allergens are out in full force, I am finding....
Posted 6/7/2020 8:28 AM (GMT -5)
Sara,

Can you give any information on the leg exercises - how to do them? I get swelling in my feet and ankles and look like I have a sock line above my ankles even when I haven’t been wearing socks. I assume it’s blood pooling in the ankles.
Posted 6/7/2020 9:54 AM (GMT -5)

Blakeleysmom said...
This does not answer your question, unfortunately, but just gives you one doctor’s opinion.

I mentioned to Blakeley’s Lyme doctor wondering if she could have POTS. (In the very beginning of learning about Lyme diagnosis). I asked if we needed to go to a doctor specializing in POTS and she stated that there’s a reason for it and that there’s something that’s causing it, so you treat the cause and it should clear up.

Whether that is accurate or not, I dont know, but I’ve often thought about if we should be treating the POTS symptoms.

Thank you for sending me that. Funny, my doctor said the opposite- that once POTS, MCAS and other things are triggered even if the initial insult (infection) is cleared, they will likely remain. That's why he wants to treat me separately for them
Posted 6/7/2020 9:58 AM (GMT -5)

dcd2103 said...
POTS 100% can be reversed, but it takes time.

It’s caused by damage to the thinly/unmyelinated c-fibers that control autonomic function. These fibers continually regrow. The sensory nerves in the skin are also unmyelinated c-fibers, hence the reason a lot of people w POTS also get SFN. The reason I mention the SFN part is because it’s the same type of nerve, thus we can make inferences from how one heals to the other. Dr K did a study and showed that after administration of IVIG (in those who responded), on a repeat nerve biopsy of the ankle it took anywhere from 6m to 4y for the nerves to regrow back to normal density. He believes they repopulate by repairing nerves that haven’t died, and re-sprouting new branches off the ones that survived. He says the only time this doesn’t happen is if there is too much damage done to the point where the nerve axon is dead, such as often happens in diabetic and chemo-induced neuropathy. In autoimmune cases it’s typically the proteins on the periphery which are attacked, not the axon, which is good because it means then nerve can survive assuming the assault doesn’t go on ad infinitum.

Point being, if your problem is autoimmune, and it most likely is, and you can handle the autoimmune issue, you will most likely recover.

I found this to be a good link for discussing POTS and the causes

https://franklincardiovascular.com/contact/

In addition check out the FB dysautonomia group and ask if anyone had recovered, I’m sure you’ll get plenty of positive replies.

Thanks for this reply. I too believe that my issue is autoimmune since this hit me bad in 2013 and never relented since. I'm going to start working with a gut specialist in hopes that I may find my answer there. I sure hope its closer to the 6 month marker than 4 years!
Posted 6/7/2020 10:00 AM (GMT -5)
Thank you for the positive responses, guys. I have had a rough couple days and needed to hear that. I've been practicing my DNRS as much as I can, hoping that and a gut protocol may be my answer.
Posted 6/7/2020 10:03 AM (GMT -5)
Where did you find a gut specialist?
Posted 6/7/2020 10:11 AM (GMT -5)
Aerose, two recommendations. #1 is get tested for SIBO if you’re having gut issues. I tested off the charts for SIBO and several others w SFN I’ve spoken too have as well. Since treating with rifaximin my SFN does seem to be improving. There’s also a NP who is pretty well recognized in the SFN community by the name of Mary Ruddick. She believes SFN starts in the gut and everyone w SFN has SIBO and her protocol is geared toward that, but quite strict I believe. I know someone on it who is making big improvements. Mary Ruddick had SFN/dysautonomia herself. Maybe worth a consultation she does telehealth.

#2 if I remember correctly, you are in CT. Go see Dr K. He is fantastic, and he will get you IVIG. It’s $1500 for the consultation, but worth every penny if it gives you your life back.

Good luck

Post Edited (dcd2103) : 6/7/2020 9:17:37 AM (GMT-6)

Posted 6/7/2020 11:17 AM (GMT -5)

dcd2103 said...
Aerose, two recommendations. #1 is get tested for SIBO if you’re having gut issues. I tested off the charts for SIBO and several others w SFN I’ve spoken too have as well. Since treating with rifaximin my SFN does seem to be improving. There’s also a NP who is pretty well recognized in the SFN community by the name of Mary Ruddick. She believes SFN starts in the gut and everyone w SFN has SIBO and her protocol is geared toward that, but quite strict I believe. I know someone on it who is making big improvements. Mary Ruddick had SFN/dysautonomia herself. Maybe worth a consultation she does telehealth.

#2 if I remember correctly, you are in CT. Go see Dr K. He is fantastic, and he will get you IVIG. It’s $1500 for the consultation, but worth every penny if it gives you your life back.

Good luck

What is SFN? I had a SIBO test and it came back negative. Showed dysbiosis in the large intestine, though. I have a lot of issues with food.

I saw Dr K years ago but he wouldn't see me anymore because I lost my insurance. I'm currently seeing another doc, Dr J in Rockville, MD who is trying to get me on IVIG as well. The problem is I only have medicaid so I have to find an in-state doctor to sign off on it
Posted 6/7/2020 5:05 PM (GMT -5)
Aerose - SFN = small fibre neuropathy.
Posted 6/7/2020 5:14 PM (GMT -5)
I believe POTS can be eliminated with treating the infections - if indeed that’s what caused it.

I don’t know if everyone will recover fully though.... like any other lyme symptom ... especially if you quit treating too soon.

My POTS is better than it was - but not completely gone.
Mine was the rapid heart rate upon standing from sitting or laying.
It used to go up to 130 (maybe higher - can’t remember exactly) and would take awhile to normalize - usually taking 20 mins (or longer)

Lately it’s only rising to about 100 bpm and will normalize usually within 10 minutes.

I realized it was better when I planted my flower pots a month ago.
Last year while planting - my heart was racing and I was sweating. Just from the bending down/up/down etc. I was fatigued after the hour long chore.
This year - no sweating and heart wasn’t racing. I was a bit fatigued afterward tho.
Posted 6/7/2020 5:33 PM (GMT -5)

WalkingbyFaith said...
Where did you find a gut specialist?

Check out this link. She said she's booked but referred me to one of her understudies

https://www.google.com/amp/s/nourishingourchildren.org/2012/12/26/if-gaps-hasnt-work-for-you-or-yours-read-this/amp/
Posted 6/7/2020 5:35 PM (GMT -5)

Girlie said...
Aerose - SFN = small fibre neuropathy.

Thanks, Girlie. I want to believe it's possible to wipe it out. There isnt a single thing I'm drawn to in life that doesnt have at least some physical aspect to it. Others a lot.
Posted 6/7/2020 7:12 PM (GMT -5)
about 3 years ago my sitting HR was around 70-80 then after just standing it would go up to 110-120 range. Now it's sitting 55 and goes up to 75 after standing. I still got a long way to go but it does seem to be getting better.
Posted 6/7/2020 7:55 PM (GMT -5)
trekkar: I could be wrong, but I think that's a normal amount of fluctuation for sitting vs standing. Either way, it's nice to know that it's gotten so much better for you!
Posted 6/7/2020 8:11 PM (GMT -5)
POTS is defined as an increase of 25 BPM when you stand up. Our pulses are supposed to be higher when standing, so trekkar you sound fine. smile Mine is similar - used to be 75 sitting and 120 standing, now is 60 sitting and 80 standing. If I get the slightest bit dehydrated, though, I can get POTSy again. Stress, menstruation, and significant barometric pressure drops can cause it to flare as well.
Posted 6/7/2020 8:47 PM (GMT -5)
Saraeli- I'm the same in regards to dehydration. Any water loss and everything gets worse
Posted 6/7/2020 9:30 PM (GMT -5)

potsnpans said...
trekkar: I could be wrong, but I think that's a normal amount of fluctuation for sitting vs standing. Either way, it's nice to know that it's gotten so much better for you!


From Mayo clinic: "A person’s heart rate is usually about 70 to 80 beats per minute when resting. Normally, the heart rate increases by 10 to 15 beats per minute when standing up, and then it settles down again. For people with postural tachycardia syndrome, the heart rate goes up considerably higher when they stand, often increasing 30 to 50 beats per minute or more. This can lead to lightheadedness, dizziness and fainting."

https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-all-about-pots-postural-tachycardia-syndrome/
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