bamagirl

Hello, Back from Mayo and I saw Dr. Low. He was very nice. I had all the usual tests. Autonomic reflex test, sweat test, blood tests for antiganglionic antibiodies. My tests revealed that I have severe dysautonomia with small fiber neuropathy in both of my feet. My reflex test was normal except my foot didn't sweat, my TTT was normal except for a 20 point increase in HR while standing-my bp did fine. My sweat test was normal except for thr tops of my feet, hence the small fiber neuropathy. My antiganglionic antibody test was normal, my lying and standing catecholamines and norepinephrine was normal too. He basically said I didn't have just "POTS", that my autonomic nervous system was behaving badly and wanted me to take clonidine. I told him that my biggest problem is these horrible autonomic storms that leave me bedridden for days and weeks at a time. I go back next year as a research patient. I was disappointed that we couldn't find a reason for the cause. Although we did discover that it isn't autoimmune, isn't my hormones or catecholamines and norepinephrine, and I don't have autonomic failure or neuropathy. I also know it isn't genetic and I was not born with it. Has anyone found the cause of your POTS? Does anyone else have small fiber neuropathy or "burning feet"? Take care bamagirl

Does anyone get deep burning skin while having a tachy episode? Sometimes the next morning afterwards my joints are stiff. I am so confused!!!

Does anyone have tingling, burning skin every day?

Does anyone have autonomic neuropathy and small fiber neuropathy? It seems this is what I have and I was wondering if I am alone and is there a possibility of reversing it and the nerves regenerating? thanks, bamagirl

I have noticed here lately that I itch really bad on my face when I am syptomatic. It's really bad at night. I already take antihistamines, but it doesn't help. Just wondering if i am alone.

How many of you guys have a strange skin sensation that goes along with your bad surges? I get certain places on my body, (upper arms, inner thighs, chest and upper back) that feels like someone put icy hot on it and it is very cool sensation. I wonder if this is part of the neuropathy. bamagirl

Just wanted to know from those of you with pre-birth POTS if any of you had to have a c-section due to your cervix not dilating or "failure to progess". This happened to me and I was wondering if cervical dilation and labor was an autonomic function. I think this is very interesting. bamagirl

Weird things like this happen to me all the time. I never have a nice, peaceful sleep pattern anymore. It sounds like your sympathetic nervous system was irritated and interfering with your "alseep" state. I do all kinds of strange things during the night. I have finally realized that my asleep state and awake state are clashing throughout my sleep patterns. Hopefully, this will pass for you and get better in time. You are not alone. Hope this helps. take care, bamagirl

Iunderstand your frustration. I have been there. I have waited for months to see a doc for POTS and when the time finally comes, nothing new to add, just try to treat the symptoms. Please don't give up!! Maybe there is a dr locally who will call and try to get you in sooner. Mayo has a "dr referral line" dedicated for dr referrals only. Hopefully that will work and then you can see a dr there and they can put you on a different treatment plan that will make you feel better. I am sending you *HUGS* and wishing you better health!!! take care, bamagirl

I was scanning and reading many posts about vision and eyes problems (myself included) and asked myself: For those of us with autonomic neuropathy- Is this something that could possibly make us blind in time? The reason I ask is because just like diabetics with autonomic or peripheral neuropathy, there is ongoing nerve damage. And eventually this damage could lead to blindness. I know personally that my eyesight has become worse and worse and my eyes are more sensitive now than ever. Anyone else wonder abouth this or have an explanation? bamagirl

I have had this for years. I used to wake up with my heart racing, neausea and tell my husband it felt like ants were stinging me. I did some research and it seems that when you have dysautonomia that you can have hypo and hyper active sympathetic nervous system activity. That is why one minute our bp and hr are low (hypo) and the next our heart is racing, we are jittery and our bp is normal or high (hyper). Then there may be times when our heart is racing but our bp is low and we are exhausted!! (hypo & hyper at the same time). I also learned that when we sleep, our body gets a surge of sympathetic nerve activity seconds before we wake up. Apparantly, this surge is what automatically brings our bodies out of a sleeping state into an awake state. This would explain why we wake up with SOOOO many horrible symptoms. It's possibly the fact that OUR surge is that "little surge" other people get before waking times 100000!!! Just something I read. Maybe something you can ask your doc? take care, bamagirl

How do you guys take beta blockers with such a low bp? My lying bp is around 75/40, but I have terrible tachy spells so how is it safe for me to take a beta blocker? thanks, bamagirl

Just wanted to know how many of you are worse now over the years and have become bedridden? I am house/bedbound and worse now than before. I am having these tachy episodes more and more. bamagirl

I am going to see Dr. Low next month and I needed to know from you guys how common this is in POTS. My POTS symptoms came after a multitude of other symptoms were ailing me, therefore, I am going to stress to him that mine has an underlying cause. The most early symptom I remember having is my feet, hands going numb and tingling along with my arms and legs feeling like ants were stinging me. I was just diagnosed with small fiber neuropathy and peripheral neuropathy, along with the POTS, of course. This is mostly common in diabetes, which I do not have. I have also been tested for lyme with positive results. I just want to see how common this is with you guys so I can take it to him. So, how any of you guys have peripheral or small fiber neuropathy and was it before or after the POTS? Thanks for your help. bamagirl

No, I am not on amy meds right now. The feelings go from feeling like a sunburn to electricity running through my veins!!!

Anyone been diagnosed with peripheral neuropathy? If so, can POTS cause it?

Does anyone ever get a stinging skin sensation or tingling in their skin and scalp? It is driving me crazy!!!

I haven't been diagnosed with anto-immune disorder but I have dysautonomia and a positive ana. Sorry I can't be more help.

The last few times I have had an injection for my migraines -demerol w/ phenergan- I get really tachy and my bp shoots up. Does anyone else get this and anyone know what causes it?

What causes autonomic neuropathy? Anyone here been diagnosed and what is the treatment and prognosis?

I totally understand how you feel. I have my husband, my son,1 personal friend, and my Dad out of all of the people I know who understand this illness. Sometimes when I have company I am afraid to smile or laugh because I know two days later when they call and ask in passing how I am and the answer is not good, they will say "well she was laughing two days ago". People think if you show up somewhere or laugh or smile or wear make-up that you are all better. When people tell me I look good I say things like "It's a good thing I don't look as bad as I feel!!!! The people who WANT to understand will understand. I have found, unfortunately, that most people really don't want to understand because illness scares people. The people who mean the most to me understand and don't question my minute to minute symptoms and I personally am not going to constantly reinterate my condition to the ones who question me every time I can't be what they need me to be just so it will make THEM feel better! Best advice I can give is: Do whatever you need to do to get through the bad times and cherish the good times and NEVER be afraid to get a little harsh to stand up for yourself!!!! We all know how strong we are!!! bamagirl

I was tested for this at the Mayo Clinic in MN. The pinched the fat on my belly and used a needle to suck some fat out. It is not bad at all compared to the POTS symtoms I have. Anyway, I believe that it is a protein based illness and is very very rare. However, the way I see it, as bad as you are feeling I would let the docs run any test they are willing to try and figure out what is going on. Really the belly fat aspirate is about as bad as a shot. Good luck and let us know how it goes. bamagirl

Lately my feet and legs will burn like a sunburn when I get in a bath, even if it is a cool one. Anyone have this or know the reason?

Earlier today I was taking a quick lukewarm shower and I noticed my legs were purple all the way down to my knees and from my knees down to my toes they were splotchy. I took my bp and pulse when I got out and it was 128/88 hr 136. I have a question: if my blood is pooling, then shouldn't my bp be low instead of high or normal? When I sat down it was 95/55 pulse 72. I am so confused. bamagirl

I am on a roll tonight! A few nights ago I got sleepy around 10pm. At midnight I woke up with my head feeling like I was on speed!! I had racing thoughts, I saw patterns in the dark, thought I heard sirens, and had horrible nightmares!! The next morning my head felt really full and lots of pressure and later in the day I had a full blown migraine which lasted 2 days then nausea after that. The next morning I was tachy while lying in bed and every noise I heard made me jump and it felt like bugs were crawlng on my skin. I am not on any meds right now. Does anyone else have nights like this?