Thanks stillHoping, I think your questions probably apply more to Boiler than myself, but I'll answer anyway!

A few years ago when I started realizing I had PN, I did think POTS was a possiblity (or maybe Ehlers Danlos Syndrome because I have hypermobile joints). I took beta blockers for almost 20 years for PVCs and ventricular tachycardia. Back then I was told that I had mitral valve prolapse; now I'm told I don't, and when I stopped taking beta blockers the arrhythmia never came back. More recently, I had a tilt table test showing orthostatic hypotension and supine hypertension. The most likely underlying cause now seems to be autoimmune, as I have high levels of antibodies that are strongly associated with lupus (but none of the other typical symptoms).

It's so interesting (and frustrating) that so many conditions overlap and have various symptoms in common. It took me a while but I've been lucky enough to have finally ended up with a great neurologist who is really interested in the challenge of trying to figure out this puzzle!

You are right, when I wrote yesterday I meant to reply to Boiler.
Brain fog….

Have you got NMH ? Have you got any treatment for that ?
Have you tested for the autonomic ganglionic ACh receptors ab ?

I have POTS, SFN and in my case also the underlying cause is autoimmune without a definite autoimmune diagnosis (yet??).
My main problems are extreme fatigue, brain fog and reduced sensation. My neuropathic pain is mostly annoying but usually tolerable.

I haven’t found any effective symptomatic treatments, and it is complicated to get immunological treatments without a specific diagnosis.
I am also looking for a treatment other then plaquenil, because I had an allergic reaction to it.

Dog walker - thank you for your response - my visual migraines sounds pretty different - I have floaters in my eyes (which are unrelated but started at the same time) and then I get a flashing spot in the middle of my vision which expands until I blink and then resets and starts expanding again. More problems if I am driving in the sun.

You said you took beta blockers for tacchycardia? Was that for SVT? or just a constant tacchycardia? I am on beta blockers for a constant high heart rate (which also have high BP) but I have had one or two episodes of what the docs are assuming was SVT (the most recent I am pretty sure my HR was up over 200 and I almost passed out - had a the warmth burning feeling spread up my right arm into my scalp - the burning dissapeared when I sat down but HR took a lot longer)

StillHoping - I may have been tested for POTS - the doc did a sitting and then standing blood pressure reading before i started beta blockers however i usually have to sit longer than he had me (5 mins) to cause symptoms. These could very well be from the beta blockers themselves in which case I guess I will just deal with it. NMH I have never been tested for but I just looked it up and it makes me wonder - when I was like 17 I had an episode where I was standing and doing my hair and suddenly I got very warm in the face and then felt like I was going to be sick and then sat down and blacked out (idk if this means anything). I havent had anything that severe since. What are autonomic ganglionic ACh receptors ab ?

I wonder if you take Zantac (or Pepcid?)? I get visual migraines from Zantac. A bright triangle in the center of my vision that spirals out within 1/2 hr. I don't get this if I don't use an H2 antagonist! I get it in both eyes at the same time.

What I had were very frequent premature ventricular contractions and exercise-induced (and once stress-induced) ventricular tachycardia. My cardiologist told me I was at risk for sudden cardiac death but I think he was just trying to get me to agree to a drug that he was doing clinical trials for. I changed doctors before too long and did just fine on plain old inderal. Are you seeing a cardiologist? It doesn't sound like you had a formal tilt table test but I would think you should.

mrs D - no I don't take either of those meds. The visual migraines can be like i said sunlight induced or sometimes when i run (but again only outside so the sun might still be the cause). Once out of the sun these flashes subside eventually. I think one of the more odd symptoms I have had occur.

dogwalker - yes I have a cardiologist - an electrophysiologist or something like that . I originally was sent to the specialist after i wore a 24 hour monitor and had 6 episodes of tacchy in 24 hours. Wasn't able to monitor the one bad event I described (happened this past february) . I just moved but when i get a new cardio. I will inquire about the tilt table test thanks!

I forgot to add the word "mild" when I mentioned orthostatic hypotension. Whatever was going haywire when I was younger seems to have straightened out, and I haven't had noticeable symptoms for many years, except occasional mild lightheadedness when changing position.

I haven't had the test you mentioned. Is that how you were diagnosed with an indefinite autoimmune cause? I thought I had read in other posts that a dx of SFN is justification for IVIG. My neurologist has mentioned "immunotherapy" but I don't know specifically what she means by that.

POTS is elavated HR when standing, and NMH is lower BP when standing.
It is measured after a few minutes of lying down (and not sitting) and a few minutes of standing. The standard test for these disorders is called tilt test, and if your doc measured only BP and not HR it wasn't a test for POTS.

Before searching for a doctor or asking to do a tilt test you can try at home to measure your BP and HR while standing and lying down (especially when you see the black spots and feel fuzzy) and check whether your HR increase by 30+ beats per minute and/or your BP decrease when standing.

SFN can affect the autonomic nervous system and cause dysautonomic problems such as POTS and NMH.
autonomic ganglionic ACh receptors ab it a test for antibodies to the Acetylcholine receptors in the autonomic pathways. If it is positive it can explain the dysautonimia and it can suggest that the cause of the neuropathy is autoimmune.

I haven't done this test yet, I would like to do it. It can be done at Mayo (as a part of expensive groups of tests), or much ceaper at Oxford.

The neuro belives the cause of my SFN is autoimmune because I have had some other problems that are much more frequent when having an autoimmune disorder and I had Lymphoma.

My neuro recommended IVIG but it is justified here for SFN only when having some specific autoimmune diagnosis. So it is going to be a long struggle for me to get it... Maybe if you have got Lupus antibodies it would be easier.

So I self tested - and one time i did this my top number in BP dropped ~20, lower number went up and heart rate went up slightly....but I wasnt able to recreate the symptoms in my attempt either (of course!). I havent been tested for the ACh receptors thing either. I am thinking I am going to try medication for the discomfort again - I have already tried gabapentin and cymbalta. Gabapentin made me dizzy and cymbalta just made me lose my mind (that is the simplest way to describe it).....any other drug recommendations that have worked for people with idiopathic SFN ?