Neuropathy treatment with POTS/postural hypotension?

[aqt1]

Hello,

I was wondering if anyone has tried any treatments for neuropathic pain that have worked without causing autonomic issues? The common options like pregabalin and amitriptyline apparently often affect autonomic function and I have postural hypotension so was wondering if anyone has tried any that worked?

[OldTed60]

These meds all caused me more problems than the neuropathy tbh. Make sure EDS is the only underlying cause of your PoTS and neuropathy because other conditions (mostly autoimmune) such as Sjögren’s can be implicated in both PoTS and neuropathy so treating the underlying cause can help the others.

[jindakay]

I’ve had remarkable success with high dose vitamin b1 twice daily and no side effects.

[Blearyeyed]

I have EDS , Chronic Dysautonomia ( P.O.T.S and Sinus Node Reentrant Tachycardia) and Fibromyalgia I take a low dose of Pregabalin, doses over 150mg a day caused me symptoms.My autonomic symptoms went haywire with AmyT.

Beta blockers, like Propranolol, are often suggested but if you get postural Hypotension that isn't right for you.

Often the neuropathy and headaches are linked to the Autonomic or Vascular dysfunction that cause the POTs and Postural Hypotension if that is the case medications that help those conditions should be tried via trial and error to find out which works for you and the neuropathy improves in general as well.

I found a combination of neuro pain medications on lowest doses has helped along with diet changes and gentle isometric exercises for peripheral areas.

I have Pregabalin, Duloxetine ( this is commonly used for many types of neurological issues now not just as an antidepressant)and paracetamol.

If you are having extra Sodium to help your POTs , you may be low in Magnesium or Potassium. The imbalance can increase neuropathy.

Usually , depending on the drugs you are on , a Magnesium supplement , an active form, like Magnesium Glycinate, is a good option ( Nutrition Geeks Magnesium 3 in 1 is a good general option) and can help neuropathy , but that might not be suitable for you with Hypotension because it can lower heart rate and blood pressure, or you may need to be careful what time if day you take it .

Increasing Magnesium and Potassium in your diet may be sufficient for you.

Also Magnesium lotions like the BetterYou formulas are usually ok to use because they are topical so they can be used without them affecting your heart rate or autonomic symptoms.

Put it on at night ,after a shower or warming the joints with a protected heat pad , especially if you also suffer from Night time pain and tingling or restless legs. Raising the end of your bed or your feet and ankles on pillows , and your lower arms on pillows can reduce night time Neuropathy too.

You may also be low in Vitamin B 12 or Folates which can increase neuropathy and cause numbness . These also affect autonomic function , thyroid , muscle strength , absorption of medicines and other nutrients like Vitamin D and Iron.

Try increasing B12 and Folates in your diet, and possibly try a sublingual active supplement. If things don't improve after a number of months it's worth requesting the GP to give you blood tests for Vitamin B12, Folate , Ferritin/ Iron and Vitamin D if you haven't had them recently.

Stop all supplements 7 days before the blood tests so that they aren't inaccurate.

Even if the GP says the results are normal get a print out copy of them for your file.

Sometimes they are at the low end of the range or borderline Deficienct and this can still cause symptoms depending on the individual.

It will help you see if there may be more changes that you could do to improve your nutrient range.

Just like with POTS, peripheral neuropathy is often improved with hydration, and sometimes lightweight compression can help to reduce the symptoms.

Isometric exercises done for a few minutes a few times a day help. Exercise and keeping active helps pain in general but with neuropathy be careful to pace yourself. Don't overwork with your hands and fingers , ankles and toes for hours in an activity as this can cause a flare of pain. It sounds mad but even knitting can become an extreme sport if it's done for too long. Work inside your comfort zone with all forms of exercise or activity, your ability increases gradually as you go.

I am actually on medication for the cardiac symptoms of my Chronic Dysautonomia, a combination of Ivabradine and Midodrine. As well as helping to reduce my Tachycardia, POTS and Arrhythmias they also helped my neuropathy, general pain , circulation and Migraines.

You need to see a Cardiologist or Vascular Specialist , whom properly understands POTS and postural Hypotension, to get onto these medications though so if you want to look into this option find out the Consultant best known in your area for POTS and ask to be referred to them , you have the right to make this request on the NHS .

If you are in England , and don't mind the trip, you could ask the GP or your Consultant to refer you to the Hypermobility/ Dysautonomia Clinic in London for proper testing .

Hope that helps , good luck with it all and please write an update and let us know how things turned out , what you tried and what helped you most.

Take care , Bee