The POTScast E90: POTS, Small Fiber Neuropathy and Mystery Symptoms with Dr David Saperstein

Many people with POTS also have small fiber neuropathy - the small nerves in their legs are decreased in number and activity. Dr. Saperstein talks about that in the context of COVID and answers several listener questions about migraine headaches, tinnitus, brain fog and more. Join us for this informative chat!
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[@TallDiana]

Great podcast! My doctors have not been interested in my POTS symptoms. Looking back, I’ve had it since my teen years. In 2015, I was diagnoses with Non Length Dependent SFN, tried IVIG which didn’t help, sent to Pain Clinic which didn’t help the full body burning, discharged to my Primary doctor, who said all this is “too complicated” for her, yet she refuses to send me to a doctor who can. I’m completely disabled, practically bed-bound, in severe pain, after having to give up everything I loved. Doctors did test and check all possibilities, and since this is idiopathic, just gave up on me, especially since I was already disabled with Cauda Equina Syndrome and Anachroiditis (30 year old surgical malpractice injury) and am now 63. Strangely, it took a year for me to do my own research while trying to help myself, finding out about Non Length Dependent SFN, and pushing my Neurologist to do the four skin biopsies I needed for the diagnosis. A Dermatologist came when I had them done, and every Neurologist, including the department head, was there to LEARN about them, why they were done, and how to do them! My NLDSFN came on over just a week with severe weakness, body twitching, burning most everywhere, loud tinnitus, a huge sneeze like I’d never had before, long episodes of yawning, brain fog such that my adult daughters sometimes had to speak for or help me relate my questions or comments to doctors, bodywide fasciculations, breathlessness, dizziness, double vision, headache, throat weakness + cough, choke, sneeze reflex. I blackout every time I stretch, but have involuntary bouts of stretching! I have adrenaline dumps when I’m just relaxing, and they can recur every few minutes! I had a frozen shoulder, then locked up knee, both of these resolved over about a year. My fingers were a little swollen with painful joints. (I had one Lyme test which was negative, but I had a history of deer tick bites since I live in the Santa Cruz mountains. A few years before all this started, I had long bouts of Trigeminal Neuralgia. I do have hyper mobile joints, but genetic tests showed nothing.) I drink over a gallon of water a day. I’ve used liquid IV type supplements in my water. I’m very heat intolerant- heat will cause an even higher heart rate than usual, blacking out, and if I don’t get down, fainting. Luckily, I always have and heed the warning. When I do pass out, which can happen even while sitting sometimes, I often wake up and vomit, hen dry heave repeatedly for several minutes. I have chest discomfort when my heart beats so fast. I was doing research today as I’m having what seems to be large fiber disease, too. Large branches down my arms, including the one over the “funny bone” are sending jolts and burning down my arms. I’m unable to use my thumbs due to terrible pain and have lost most of the muscle on the left one which is always the worst. I am very uncomfortable in a soft brace due to allodynia, so usually keep the thumb against the middle knuckle of the first finger. I DO have pain in high spine, so wonder if some arm and hand pain comes from this area, as today I’m getting lots of pain in my ring and little fingers, too. I also have some pain above my mangled and stretched Cauda Equina/torn Dura/failed fusion around L-3 to S-2. One Neurologist thought inflammation in this surgically damaged area could have played a part in my disease process. I’m stuck with this medical group because it’s the only plan I can afford. I was uninsured for ten years until the ACA! I have little hope and have PTSD from everything I’ve been through medically. If there’s any way for you to recommend a good doctor who might help me near Santa Cruz, CA, I might have a chance. I feel I could die due to being so severely debilitated. Stanford POTS doctors have at least a six month long wait list and will diagnose, but many do not TREAT POTS! Kaiser did send me there before I was diagnosed with my SFN, so might send me somewhere for POTS. THE Kaiser system profits often the LESS THEY DO! 😣

[@anson.meadows]

I really like this doctor. My severe disease involving all of the described co-morbidities began in 2020 after an unknown infection in the GI (swollen lymph nodes). I never had EDS issues and no genetic markers for it, but in 6 months, I went from lifting heavy weights in the gym to having damaged, hyper mobile joints all over my body. I eventually tested positive for Lyme Disease, Mycoplasma, and a variety of other infections at the MAYO CLINIC…high suspicion of reactivated viral infection in my cranial nerves also. I am continuing to decline but am on IVIG with antibiotics now and working on a diet that’s vegan based with supplemental aspects taken care of, and so forth. Oh, and I’ve seen 200 plus doctors in two years and am now unable to walk in a nursing home at 34 years old. Incredibly fit military member and now given a terminally ill diagnosis from the VA, having every symptom and diagnosis he speaks of.

[@Myworldmymind908]

Have tou ever taken a flouroquinolone antibiotic ever ?

[@ramonapartridge7563]

I have just been diagnosed with POTS and in 2019 I was diagnosed with Severe, Small fiber Polyneuropathy, in 2013 post shoulder surgery I went into fatigue with physical therapy and was diagnosed with fibromyalgia. I also had superficial veins taken out of my legs by cardiologist who said I had venous reflux disease and I failed a stress test and cardiac cath showed 10-20% blockage. On my CT this year zero blockages showed up and on my echocardiogram hf 45-50% shows up Im trying to learn as much as I can about my illness and I’m the one who asked for the tilt test. My symptoms are horrible all day from sweats, to racing heart, to nearly passing out several times a day to dizziness in any movement I do I was plus plus plus positive for POTS as in the exam i sweat profusely, tried to do breathing to keep from passing out my bp fluctuated several degrees from stand up took over 10 minutes to calm me back down. I have been diagnosed with anxiety and im on meds for that😢 but this is a great podcast and start to my journey in trying to deal with this. My extremities get cold then hot then cold and hot I feel nausea with it and so Im very symptomatic right now. I have some gi issues but I’m allergic to a lot of foods too many actually and I have indoor and outdoor allergies too. So I get sick a lot. All protein related Im reading. I have mildly low gamma-goblin. I have been thought to have mixed connective tissue seronegative rheumatoid and lupus by genetic test Im rheumatoid based off number system. I’m tired 😴 I’m in pain and chest pain is often daily all day long. Pain is real and fatigue is real. I’m told exercise I use to exercise all the time now I don’t feel well I’m sweating profusely or not at all. I’m just sharing my stuff in case it helps. My migraines started after a car accident in 1999. My toe and finger numbness started somewhere in the early 2000’s maybe even after my 2005 knee surgery I don’t remember.

[@Myworldmymind908]

Have you ever taken a flouroquinolone antibiotic ever?

[@ChihuAudioMan]

Can micro clotting of the blood starve and damage small nerve fibers?

[@lynetteprice8519]

LDN low dose naltrexone helps brain fog. I take 1.5 mcg and my taint of went away overight...literally!! 6 months later and it's still working. I personally believe that POTS is due to microclots from the spike protein. The spike protein messes with the vascular system, obstructing blood flow. One study showed that NAC and bromelin break up the spike protein. I'm hopeful because NAC is a anti inflammatory and anti viral. It also helps with blood clots

[@jennywickerham5905]

I have been diagnosed with sensory neuropathic cough. I wonder if it is related to my POTS.

[@mick7338]

Can someone help me? Im cencerd to have POTS. My heart rate when laying down is like 65-70. Sometimes when standing up it goes really quick to 120, but its for like 2 seconds. But then it comes down to like 100 and it stays there for as long as i stand even for 1 hour. Im concerd to have pots cuz my heartrate goes up a lot when standing, but comes down really quickly after. (not to like 85 most of the time) Someone know my chances to have pots?? No diziness, no fainting, no shortness of breath etc etc. Just the high heartrate.

[@lilhutchi15]

If you aren't having symptoms I wouldn't worry about it. Having your heart rate go up to 120 isn't dangerous or a cause of long term damage. The treatment and testing for POTS is only worth it if you are having a lot of symptoms. Lifestyle changes that are recommended for POTS patients (drinking more water, getting good sleep, gradually building in more exercise, no alcohol, compression stockings, etc) could be beneficial, but if you aren't feeling bad there isn't any need.