POtS & Autonomic Neuropathy -infections

[kkrylee]

18 yr old female, 115 lbs with POTS & Autonomic Neuropathy.  Also, mild mitral valve regurgitation, ADHD, mild spina biffida, and flexibility of EDS but not other symptoms of EDS.  No drugs, alcohol, or sexual activity.  College student and dancer.  Extremely physically active, mainly with dance.

Currently on Mestinon which has almost stopped the vision blackouts (that were 15 -20 x's day) and Robinul for the constant nausea.  All other symptoms still remain: fatigue, shooting pains, some loss of sensation on right side, stomach issues, reflux, tachycardia, bradycardia, random low-grade fevers, dizziness, headache, heat intolerance, feeling like low sugar events

Since the end of August, she has had a urinary tract infection, then a yeast infection, then a severe respiratory infection, and then swollen glands and a throat issue. Is this something (so many infections) that is common in patients with POTS and Autonomic Neuropathy? She still tries to have a very active lifestyle (college, dancing) and I am wondering if that runs her body down making her susceptible to illness.

She has had (almost) every test known to man and we do not know the cause of the POTS & AN.  MS & Lupus & Auto Immune have been ruled out due to testing and Lyme was tested (Western Blot) several times and ruled out.  Tumors (Pheochromatoma, Mastocytosis, etc) also ruled out.  MRI's fine except for large pituitary which has not changed over a 2 yr period so was ruled out as an issue.  

Does anyone else have frequent infections with POTS & Autonomic Neuropathy?  

[Dr Rajgopal]

Hi,
Viral and bacterial infections that damage the autonomic nervous system are a common cause of POTS. Other causes include exposure to toxic chemicals or even some prescription medications which damage the autonomic nervous system,  genetically inherited neurotransmitter disorders, peripheral nerve damage due to rapid weight loss, diabetes. The causes can be both  genetic and acquired. Ehlers-Danlos syndrome, a connective tissue disorder which permits veins to dilate excessively, is now an accepted cause of POTS. Essentially anything that can damage the brain stem and important autonomic nervous system structures can cause POTS. Infections, swollen glands and flu like symptoms are common in persons with POTS because of significant immune system involvement. Nutritional supplements consisting of multivitamins, multiminerals and Omega 3 fatty acids must be taken  to strengthen the immune system. Hope this helps you. Take care and regards!

[kkrylee]

Thank you.  Yes, that helps.  I had forgotten that her doctor wanted me to get Omega 3 fatty acids.  He specifically stated that it must be Carlson brand "Super DHA" 500 mg fish old capsules because they are checked for 28 different pollutants and are mercury free.  He said, do not take others with 1000 mg.

I can't believe that I forgot this and your response made me search for the papers from her last visit.  There is so much to keep up with: the numerous tests (blood, urine, MRI's, heart tests), the constant symptoms, and daily calls from her with more problems.

She is trying to attend college and it gets quite difficult.  Her goal is to become a Pediatric Neurologist, hopefully specializing in Autonomic Disorders.  She has loved human anatomy since she was a toddler.

Again, thank you.  Your time is appreciated for all of the people on Medhelp more than you would know

[babygirlK00]

Hey, I wanted to know if your daughter overcame this issue? Because I feel I just started this issue and I can't seem to bare with the symptoms everyday & I'm trying to get ready for college August.

[El_Millard]

I was diagnosed with POTS after Zoladex implants for endometriosis in 2012. Perfectly normal prior to these shots. I suggest you look into Anthony William books - this have turned my condition around BIG TIME - more than any of the pharmaceuticals that they just shoved me on to mask my symptoms. As an ambo, I know how these things work! We all want to know the cause and fix it, not just bandaid it. Happy to connect with anyone who wants some support - I've been there and done it all. Medical Medium, Anthony William exposes POTS and other "mystery illness' that doctors don't seem to understand. I am happy to say I am probably 80% better and it's a journey, it really is BUT 80% means everything to me after feeling like I was going to die for the last 5 years.