What helps Orthostatic Hypotension?

Hi,

was recently diagnosed with this (from what i was told, it's reduced BP during activity/standing up). Apparently had it for many years, but for the last 6 months it has gotten so severe that i have to hold on to something not to fall. All objects/people in front of me becomes blurry and i get really dizzy. Goes on for about 20-30 seconds. My resting BP is very good, measured last week and also many times for the last 6 months. So really bad during activity/training and also during things like carpentry for example. I would say that this perhaps is now my worst symptom.

I have babesia, bartonella and lyme. Not treating at the moment. Trying to drink lots of water during the day and look after my nutrition. Plan to start Buhner soon.

I would think that this would resolve or get better with treatment? But i wonder if anyone else struggle with this. Would love to hear what has helped you the most?

Thank you!

Tommy

Also, is this condition the same as POTS?

dcd2103 said...
POTS is a type of orthostatic hypotension, the most common kind.

If I remember correctly, you are the one w/ suspected Small Fiber Neuropathy? Has that gotten better?

POTS and SFN go together. The reason is because the autonomic nerves are thinly myelinated c-fibers, the same type of nerve as the sensory nerves in your skin. Whatever attacks one often attacks the other. Which means if youre having both POTS and SFN, its inflammatory/autoimmune. The inflammatory process was probably triggered by the infection. Usually IVIG is used to treat this.

Yes, that would be me. It has gotten better although i haven't done anything for it yet. The burning and stabbing/needle sensations in my legs is not that severe atm. Anyways..I was hospitalised for 2 days, department of neurology. This condition was actually all they diagnosed me with. I asked about the skin biopsi, but since I could feel cold/hot, vibrating sensations, needles when they stung me also not having the feeling of walking on needles they don't think I have SFN.

However i am supposed to get a thermo test within a few months but if that doesnt show anything they will not treat me. Not sure what this test would show though...

But i think i can say for sure that I will get no IVIG treatment..

OI, particularly POTS, is common with these infections, yes. It also is common with other nervous system conditions, post-viral syndromes, and chronic fatigue syndrome. It's a form of dysautonomia, which is dysfunction of the autonomic nervous system.

Maintaining proper hydration (not too much or too little) and electrolytes (MUCH more salt than you think) is enough to treat it for some people. The number of ounces of water for proper hydration should be your weight in pounds divided by two, adding more if you sweat or breathe hard. My POTS specialist recommends two teaspoons (!) of non-iodized salt per day, which helps to maintain proper hydration and blood volume.

Others need compression garments, ranging from the footless calf-only tights to the full waist-high compression stockings. These prevent blood from pooling in the legs and shunt it upward. Recumbent exercise is good to keep circulation going and prevent deconditioning. Some folks take meds for POTS, but the specialists I have seen have said they have not been found in testing to be more effective than placebos. That said, I know patients who swear the meds are helpful.

Don't push yourself when you are alone or in public; use wheelchairs during appointments, if you think there's any risk of passing out, because the risk just isn't worth it.

I find it helpful to have a pulse oximeter, portable ECG device, and BP cuff at home for monitoring symptoms. Using the pulse oximeter for biofeedback can be helpful, because it's possible to "breathe" your heart rate down, with practice.

For me, POTS comes and goes depending on hormonal changes, barometric pressure, dehydration, sleep deprivation, and stress. If I have a flare of symptoms in general, then I tend to have at least a touch of POTS as well, since for me it flares with any sort of inflammation neurologically. It has been debilitating in the past, and I have been hospitalized for it, too. But it does get better, and almost always goes away as your system becomes healthier. I also have experienced neuropathy in my hands and feet, and that has improved a great deal as well.

Taking care of your nervous system is key. DNRS is a practice that rewires the limbic system and can provide relief for many neurological conditions. I have had good results from this. Managing mast cell activation syndrome, if you have it, also is key for managing POTS and other autonomic dysfunction. Ditto for mold exposure. Helpful supplements can include: magnesium, lion's mane mushroom, DHA and other sources of omega 3 fatty acids, curcumin, B vitamins, and CBD. Neurological damage can persist long after infections are managed, so it's good to be proactive about taking care of your nervous system.

I have had POTs with lyme/bart.

Prob a milder than some.

When I stood up my heart rate would climb.

The good news? It’s recently improved - my heart rate only goes up slightly now ...
I was starting to think it would be with me forever.

It can take a lot of treatment and time

when my adrenals had been spasming periodically provoked and not for years my aldosterone levels were faintingly low. i did not want to order the synthetic inhaled aldosterone from hong kong with a big ticket cost so i got in the habit of carrying raw licorice sticks and drinking salt water solution in the morning . the circulation p from hepapro is pretty good at helping too. when lumbrokinase and bee venom helped the blood flow better it hasn't bothered me in a while.

People with tick-borne disease often have "thick blood" and can be prone to clots. It's typical for doctors who are not Lyme-literate to be ignorant of that connection. I would assume that the tick-borne disease caused the circulation problems. Lyme-literate or not, it's infuriating to me when doctors are only interested in treating symptoms. Does your neurologist have some other theory about why you have circulation issues? Are you taking blood thinning drugs or herbs to prevent clots?

The other day, Walking By Faith sent this link: https://www.betterhealthguy.com/tfim2020
If you scroll down to the presentation by Ann Corson, then you will find a wealth of information on Lyme-linked hypercoagulation.

"stabbing/needle sensations in my legs" - can be from these tick infections themselves too.

SFN- funny, no Dr ever even mentioned that to me.....but ABX cured it 90%. Now its from tight muscles pinching nerves occasionally, I can usually manually release it.

I had a leg clot too, right when stopping ABX. Also discovered I have two of the known clotting genes. And know 4 years after, I get "sock marks" at my sock-line. I hate compression socks. Only ware them in winter with long pants. I take way less BP med now, and learned garlic capsules works just as good for the minimal BP med I still took.

"The mainstream medical community does say that two blood clots (or even one) mean a person should be on blood thinners for life"

Not nessesarliy, mine didn't. Once you have a leg clot (DVT), they realy mention the need to be mobile and not sit for more than one hr- must get up. This can happen more easily with people who have genes that are associated with it- get tested.

I was on blood thinners for two weeks to gradually get the clot cleaned out vs a lump into the heart/lungs/or brain. There is a thickenss # they aim for during this time- they you go back to normal if your # can get there. Mine did go back to normal.

The after affects of a DVT in ones leg is the swelling can permanently wreck the "check valves" in your leg causing edema.

High BP can be from lyme too- the body is stressed a lot. And high BP can also be the result of anxiety or high cortisol. Some of the older BP meds mellow out high cortisol. Anyone with a past high BP should get a personal BP cuff/tester.

BP and clotting can come hand in hand but also can be separate. .

Post Edited (astroman) : 9/20/2020 9:36:06 PM (GMT-6)

There is a three letter acronym for the blood "thickness" or viscosity, I forget. "R" something. I had it tested a few times after it normalized too. When your temporarily on thinners to gradually break the clot, they bring your viscosity # below normal.

I had a daily Cumadin pill and self injections daily in what little gut fat I have (it looked like I took on a weak shotgun fire to my belly !).

Anyway, my clot happened at the same time I just got off ABX and was battling bad Candida with Diflucan. Since I cant detox very good, this combo of meds really made me feel toxified. That and the combo of me having two clot genes must have been the icing on the cake.

No, the Drs did not pinpioint anymore as to...."why". You know conventional medicine... "your good now" why bother lol.