Is pushing against POTS dangerous?

[Wanja]

Hey guys,

As i am looking for explanation for my onholding hardcore neurological symptoms which evolved over the last 3 month, i was wondering if it could be permanent damage by pots. I wasnt able to walk for weeks, have insane brain fog and derealisation, heavily impaired cognitive function, spasms and twitches in my legs and body, cant think or orientate, extreme vision changes.

When my crash started i had the worst pots i ever had. When i was walking i felt that all the blood drained from my brain to the point i thought i would pass out every moment, but i pushed myself and kept walking.

Could this do permanent damage to the brain? As prolonged lack of oxygen or blood flow?
Are there cases and people who experienced this?

 

[lenora]

Hello @Wanja....I don't know that answer, but I would strongly encourage you to ask your neurologist (if you have one...or if you don't, you probably should). Younger ones are fine as they'll be with you over your lifetime, and often have up-to-date knowledge. More is known about POTS today, so that's good.

In the meantime, I wouldn't push too far, sit down when necessary and always have your groceries delivered. Kroger's does it for free I found out from a friend. They'll even bring them into your apt. If they're placed on a counter you shouldn't have to bend over.

Do call or make an appt. with a neurologist. If new, make certain you tell them as you'll often get in earlier. To get answers to existing problem, I find a nurse practitioner or physician's assistant is the way to go. Carefully write out your question, and the answer should get back to you within 5 days (if you start on Monday). Try to find someone who has dealt with this situation before. I spend a lot of time on the telephone, but it does pay off. Recently found a surgeon, one of only seven in the world, who does a specific type of surgery I needed (nothing to do with ME or Co.). True, I spent an entire day on the phone, asked questions until someone gave me the name of this man....and he's exactly what I need. So don't consider it a waste of time. Wishing you well. Lenora

 

[Learner1]

This sounds like more than a typical case of POTS. Have you been tested for:

1. Viruses
2. Bacterial infections
3. Cerebral spinal fluid tested for infections
4. Neurologic antibodies
5. B12 and other nutrient deficiencies, like B1 and B6?
6. Mitochondrial myopathy

It may be a combination of a few of the above. Thorough testing to diagnose the cause and drivers of your situation is important, as there are some expensive but effective treatments for some, cheap and simple suctions for others.

Best wishes...

 

[lenora]

Good thoughts @Learner1.....a neurologist could possibly rule out a lot of these problems. You'll definitely need one for CSF test (lumbar puncture). I had two within a few mos. of each other. Just lay still so you don't get that horrid headache they warn you about. I did, but something like a day or so later...but then I have other problems.

You'll feel a bit of pressure, but should have no pain....and the test is over very fast. If your knees are in good shape, you'll be just fine. A huge improvement over my first many, many years ago.

I hope you'll be as fortunate...you definitely want someone you can talk to and ask questions of. Take someone with you, if possible, as it's important to get all of the information written down if possible. Yours, Lenora

 

[Martin aka paused||M.E.]

This sounds like more than a typical case of POTS. Have you been tested for:

1. Viruses
2. Bacterial infections
3. Cerebral spinal fluid tested for infections
4. Neurologic antibodies
5. B12 and other nutrient deficiencies, like B1 and B6?
6. Mitochondrial myopathy

It may be a combination of a few of the above. Thorough testing to diagnose the cause and drivers of your situation is important, as there are some expensive but effective treatments for some, cheap and simple suctions for others.

Best wishes...

I would add
7. Small Fibre Neuropathy (skin biopsy)

 

[Rufous McKinney]

When my crash started i had the worst pots i ever had.

all that rather happened to me during an extended trip in which I never recovered from The Arrival. So i developed a whole series of far worsening neurological symptoms, major tachycardia, nearly fainting, unable to process visual inputs yada yada.

I did: pull out of that very low place over a period of several more months required to- recover from The Departure.

This three month experiment led me to some startling conclusions:

Moving about more, due to logistics increased my physical muscles and improved my stagnent lymph- but that involved a trade off and it seems: far worse neurology- set in. That trade off did not seem very helpful.

 

[Booble]

I don't think that prolonged lack of oxygen due to pushing yourself while feeling the POTS would manifest in the way you are now experiencing. Previous lack of oxygen causing some degree of damage presents differently.