POTS - how long before your symptoms cleared up?

I have 1 infection left to clear (Bartonella), and my main symptom is POTS. My HR goes from 65-75 when laying down to 110-130 when standing, and eventually comes down closer to 100. Sitting immediately brings it to normal. Exercising causes it to skyrocket (Treadmill 170’s, elliptical 150’s) which makes doing cardio very difficult. When I’m on antibiotics It seems to improve, and the symptoms are definitely better in the morning. My question is, for those who have POTS, or have had it, when did your symptoms improve or clear up? Did they take some time to resolve after you finished treating, did they only occur during herxes, or did they only occur while you were actively infected? I’m trying to discern whether my symptoms are from the active infection or if there is damage from having a prolonged infection that will take time to heal.

I am going for a tilt table test next week just for the formal diagnosis (even though I’ve had symptoms on and off for about a year). My cardiologist prescribed a beta blocker (atenolol) but I am terrified to take it as my blood pressure normally runs low - even though he said he gave me the lowest dose and that atenolol is the least likely of the beta blockers to lower your BP. Has anyone found supplements or herbs that have helped?

Hi, Solaris,

POTS can be secondary to lots of these infections, not just bartonella, so it might be leftover damage, sorry to say. That said, when you are healthier overall, it is very likely to resolve. For me, POTS flares when I am dehydrated or have not slept enough, when I'm herxing, when I'm depleted overall from pushing myself, when the barometric pressure drops in winter, when i feel very nervous, or when I am sick from a chronic or acute infection.

I agree with skipping the beta blocker, especially if you have lower BP already and if fatigue is one of your symptoms. There are other drugs used to treat it, but they all are pretty hit-or-miss in terms of being helpful. The best remedy for me has been high salt intake (1.5 tsp of non-iodized natural salt per day) along with significant hydration (3L water per day). During flares, I find compression stockings helpful as well.

I have found a cardiologist who specializes in dysautonomia so I know it's possible, but most doctors who specialize in dysautonomia are neurologists because it's a nervous system issue fundamentally, not a cardiology issue. True specialists are few and far between, but maybe a different specialist would be more helpful for you. These infections can have so very many neurological symptoms, so focus on treatments that encourage neurological healing. I have found a few things helpful, including essential oils, acupressure points, DNRS, tapping (EFT), and vagus nerve stimulation. Herbs people use for neuro health are burbur, pinella, cinnamon, CBD, and lion's mane (a mushroom). Some also find magnesium and alpha-lipoic acid helpful. An herbal beta blocker you could try is butterbur.

A treadmill sounds risky for someone with active POTS, at least it would be for me. Have you considered recumbent exercise, floor-based yoga or pilates, or a rowing machine?

Good luck, and hang in there. POTS is so limiting and frustrating, but it's very likely to resolve as other things do. In the mean time, don't hesitate to use a wheelchair or rollator to keep yourself safe as you navigate outings and appointments.

salt water and raw licorice sticks helped in the worst of it . there is an inhaled aldosterone one can order from hong kong if real bad . i know nitric oxide levels and heart inflammation play a role . oddly my flat finger syndrome went away with loads of l. planterium enough to start playing guitar again . besides rocephin iv curcumin helped my heart and endothelial lining most ...hope this helps

Dynamic Neural Retraining System

https://retrainingthebrain.com

I think the basic package is just under $300.
It's about re-wiring our brain. We're stuck in a constant loop and need to interrupt that.

saraeli said...
My specialists all thought my symptoms were so obvious that they offered a tilt table test but said there was really no need and could make the diagnosis without it. It sounds like your symptoms are pretty clear-cut as well.

It makes total sense that a "sodium waster" would have POTS. I have always loved salt, but I have found it challenging to get the full 1.5 teaspoons every day sometimes. I definitely would not ingest so much water if I did not get enough salt, though, and I try to make sure I have enough potassium as well to keep the electrolytes in balance.

DNRS is learned through a series of training videos online. https://retrainingthebrain.com/

Tapping is something you do to yourself, you just learn how with a quick online video. One of them is here, but there are others as well, with some variations: https://www.thetappingsolution.com/tapping-101/

One pharmaceutical alternative to a beta blocker is pyridostigmide, which acts on the the nerve signals received by muscles. Another is Florinef, which is a steroid. I've had doctors tell me that there's very little research about POTS and that drugs for it work as well as placebos (which, to be clear, means they do work sometimes!). I do know people who feel drugs have been very helpful for POTS.

The essential oils I find most helpful are a blend of frankincense, geranium, and lavender, but there are lots of recommendations online. I think anything calming or used for pain would be beneficial for "resetting" the nervous system, but of course your mileage may vary. I use these for all things neurological.

One thing I forgot to mention is that I have a $25 pulse oximeter that I find very valuable. It's helpful to me to know how high my heart is and at which times. It's good for tracking symptom patterns, knowing when I need to sit down for safety, and for working on ways to lower my heart rate through breathing (using it as biofeedback). I also have a BP cuff that's come in handy for noticing correlations with BP decreases. Good investments.

Thanks for all the links, I will check them out! I believe my symptoms are cut and dry and don’t require the tilt table test but I’m planning to go to it just to have the official diagnosis - might be helpful for insurance reimbursement purposes or whatnot.

Regarding the Pulse ox and BP cuff - I’m a home care physical therapist and I use them all the time! The pulse ox is invaluable as a biofeedback tool. I think most people should have one handy if they can spare the 25 bucks.

My POTS (and Bartonella symptoms in general) only seemed to become much more severe in August after I finished treating for Babesia. The Azithromyicin and Malarone combo seemed to keep it manageable for the 4.5 months I was on them. I’m hopeful that this new protocol of Diflucan and Tetracycline 2 weeks on 2 weeks off will do the trick - I basically use my POTS symptoms as a gauge as to if a treatment is helping or not - but perhaps there is some damage that will last beyond when the infection is cleared. In the meantime, trying to gather as many techniques and information as possible to control the symptoms.

saraeli said...
My POTS was worst during a Babesia herx. Not sure if the POTS itself was part of the herx or if the Alka-Seltzer Gold I was taking to combat the herx messed up my electrolytes, but regardless the days in the hospital with a heart that would race to 155 lying down was not my best Lyme moment. ;) That hospital stay also was when the head of cardiology told me in front of four cardiology fellows that I am completely healthy and then literally quoted Wikipedia when explaining to me what POTS is (even though I have had it for years off and on and told them I had it when admitted...). I sort of envy people who have illnesses that the medical community understands....

And hooray for pulse oximeters! I have purchased them for people before as a helpful (if weird) gift. They can be so useful.

Honestly I opted out of the tilt table test because I have heard stories of people vomiting or passing out from them, and I am pretty much phobic about both possibilities. Not sure if those are common reactions, though. Probably for someone with manageable symptoms such as yourself it will be an uneventful test.

I stopped taking alka seltzer gold for the very same reason - I believe it played a role in messing up my electrolyte balance. I was taking it once a day for a long time. I spent a night in the Hospital 3 weeks ago because my sodium was down to 128ish - Between the diet changes to limit water and increase salt and the 2 weeks on the antibiotics I’ve made a lot of progress. But now, the moment of truth, 2 weeks off antibiotics.

155 laying down? Yikes! I’ve never experienced that. I basically jump to 130-140 walking up the stairs then it settles back down near 100, in the afternoons or when my Bart symptoms are flaring I’ll be at 120ish standing still, but as soon as I sit it goes back to a normal range. If I hit the dreaded treadmill though, I basically hit the up near the max heart rate (220 minus your age) which I probably will stay away from for the time being. The elliptical I can keep it around 150 which is a more comfortable experience.

The lady from the radiology department mentioned that some patients experience those issues with the table test and I am definitely nervous about it, but figure it’s worth it if I can go into a doctor with a firm diagnosis attached.

Out of all the information you’ve provided, what have you found to be the most helpful for you in controlling your POTS symptoms? I’m going to look into the neuro health supplements to see if I should add anything to my regiment, as long as Burbur and pinella dont interact with anything I may try to add those first.

What has been most helpful is tough to say, since for me (maybe for a lot of us?) POTS just worsens alongside other symptoms. When I feel bad overall, the POTS is there as one of the symptoms. When I feel better, the POTS is gone. I rarely feel fine except for POTS or feel awful without POTS.

I think keeping a good balance of salt and hydration helps me a lot, as does keeping stress levels low. The stress part encompasses a lot of what I suggested, and of course will vary for everyone. While acute nervousness does cause a POTS flare for me (I pretty much always have it before a medical appointment, for example) I think any ongoing stress is bad for the nervous system, and will contribute to dysfunction. Sorry it's not a more succinct answer, but I would say do whichever nervous system-regulating activity feels most beneficial to you - yoga, DNRS, prayer, tapping, vagus nerve stimulation exercises, swinging, chanting, body work, weighted blankets, etc.