Hi All,

I am just wondering if any knows to what extend a peripheral autonomic nerve can heal, and the best way to promote its healing?

WHat supplements etc, is there any research articles I can read in regards to this?

I have autonomic dysfunction presenting as POTS, I apparently have ehlers danlos type 3, which can weaken the collagen and nerves easier to damage from autoimmune illnesses and viruses etc.

Thanks

Andy

It all depends on what is the cause of the damage. Diabetes is one common offender. In this case, it's possible to reduce symptoms by controlling your blood sugar.

Other causes, such as autoimmune disease is not so easy to fix. If AI disease like Sjogren's has attacked the ganglia, then damage is usually permanent and your best bet is to control the progression of the AI disease and therefore slow or stop progression of the nerve damage.

Some people here have reported reduced symptoms from toxic type dysautonomia from use of benfotiamine. Your B12 level should also be above 400.

If you don't know the cause, it certainly can't hurt to try various supplements. There are also several medications for POTS to help control heart rate and BP and reduce symptoms.

Thanks for your reply,

Is it not possible for the ganglia to repair? I know the normal nerves can.

Apparently I have ehlers danlos syndrome hyper-mobility syndrome, but I am not 100% and not sure how this can cause POTS.

I am having an Anti nuclear antibodies test to see if we can spot anything there.

My blood pressure is always normal, but I feel light headed and faster hr when I stand up. Midodrine made me more dizzy so gave that one up.

I just want to find a cause and a solution.

I have been told by my neuro at Hopkins that ganglia damaged from autoimmune disease (like Sjogren's) is typically permanent and not reversible.

Have you checked your BP when & while you stand (when you are actually having symptoms)? It's common for doctors to only check when sitting (even when the patient complains of problems when standing. You need to see what it's doing WHILE you're having symptoms. Have you had a tilt table?

You should have also checked your BP after taking the Midodrine (when having symptoms) to see if there is any changes.

I am not an expert on EDS, but I know it is sometimes seen WITH autoimmune disease and can accompany many other conditions. Whether or not it actually solely causes dysautonomia...I can't say. Never heard that.

Do you have any other unexplained symptoms?

Gluten can cause a lot of strange symptoms from sensitivity to celiac disease, and it's in everything, even lipstick and things you wouldn't expect.

Thanks,

My POTS is more complicated, Midodrine makes me more dizzy, it raises my BP a tiny bit but my BP is ALWAYS normal, even when I feel crap.

I think because my hands, feet are always cold, I maybe over constricting to compensate for the failed vasoconstriction in the splanchnic area or maybe lowered blood volume. I was thinking of trying florinef but depends.

Not sure why you are considering florinef (or even tried midodinre) IF your BP is normal (even standing). Both of these meds are to increase BP. If you have high HR with your POTS then you need a beta blockers or similar to help control your HR.

Many times your HR increases in compensation for a drop in BP. But you say your BP is fine 'always', so not sure what symptom exactly you are looking to treat. Please advise. POTS/autonomic dysfunction can have various symptoms. It would be more helpful if you told us which symptoms you are having problems with.

Beta blockers are counter effective in my case, when I stand my BP drops for a few seconds and then recovers, my heart is presumably what is keeping the blood pressure normal.

Florinef increases BP, but it increases the blood volume, which means more blood in the total circulation, an increased pressure which will prevent the drop and symptoms.

Light headedness is my main symptom. A BP in the arm doesnt reflect a true BP in the brain, or other vascular beds. Just wish I knew the answers to this.

Beta blockers are only real helpful if you have significant tachy rates. It's doesn't sound like that's much of a problem for you either.

If your BP corrects itself that fast, then does your light-headedness correct that fast too?

Your BP in the arm may not be the same as in the brain, but it is relative to symptoms...if the arm BP is low, then so is the brain and most people are symptomatic when the arm BP drops to a certain level. It doesn't really matter what your BP is (arm or brain). Some people are symptomatic at 95/65. I have had this so many years that I can function with systolics into the 80's and don't get real lightheaded until the low 80's or 70's. It also depends on how fast the drop is. A 30-40 point drop in 1-3 minutes will usually cause symptoms (regardless of BP numbers) faster and more profound then 40 point drop over 15 minutes (even if it goes into the 80's).

Florinef is a corticosteroid and helps to retain volume and salt. Have you tried a simple high salt diet yet?

It sounds like you have significant lightheadedness...more so then your BP dictates (if it corrects itself that quickly). What did your tilt table test show?

Some simple suggestions would be to avoid caffeine (all), increase fluid intake, and increase salt intake. If you still have problems, then try a low dose (no more then .05mg) of florinef.

I'm not sure how much it drops as its so quick to catch it. But when it has recovered sometimes I feel light headed and weird still even though BP is normal.

I've tried more salt and fluids, not a great help plus I pee so often when drinking a lot.