lewis

Just got done with 2 years of testing with finishing up with autonomic testing. I've had every test I've ever heard of. Everything has come back normal. I failed a ttt my cardiologist did a year ago but passed the autonomic one they did again just fine. I have alot of pots type symptoms that come and go. I am not sure what could be causing my problems. I have been very slowly making progress and feeling better and nerve pain almost gone until last week. I've had problems before with palpitations when doing push ups. I decided to do some work out dips. I felt fine when done and started eating an avacado. It didn't go down all the way but didn't feel stuck. My heart suddenly went into what felt like a fib. I tried coughing a bunch of times and bearing down but nothing. Adrenaline began to surge and I was feeling really bad. I decided to take a drink and it pushed the avacado and I slowly felt better. I felt horrible after for a week and feel like all the progress I made has been wiped and I'm starting over. I have a hiatal hernia that has felt jacked up since. I feel like the vagus nerve and my hernia have something to do with what's going on with me. I have esophageal spasms all the time. Anyone heard of something like this causing dysautonomia? Or could this be a reaction to the adrenaline surge? Any opinions or insight would be appreciated.

I have this same thing, I think it must stimulate the sympathetic nervous system. My mind and thinking is so much clear, I am really much happier and have tons of energy. However the hangover the next day or so isn't worth it. I think it also may deplete some nutrient I am lie on cause takes me a week to get back to feeling ok. Then I hunger for that evening of fun again. Vicious cycle.

This is one symptom I'm glad that left for the time being. For me it had to be something in my diet that likely made it worse. I'm not sure if you've messed with your diet or supplements but I went off of everything and eat only fruits, vegetables, meat, nuts and some dairy. Nothing that has any added fortified fake so called nutrients. This is the only thing that has helped me and I no longer take any supplements since I get all I need from my diet.

Being in the water really helps me since it is cooler and constricts my blood vessels. I wouldn't hesitate to do it since it makes me almost feel normal when I go in. How has being in the water affected you?

I had median arcuate ligament syndrome (mals) and eating made everything worse. I had surgery to correct it and can eat just fine now. The main symptom is pain after eating though. I just mention this as it is rare and doctors don't look for it.

Thanks the info. I was negative for mast cell disorders and everything else that I been tested for. A few more tests to go though and I will be out of things to test for.

I had a standing catecholemine test this past week and when sitting everything was normal but standing my norepinephrine levels were elevated. I searched and couldn't find anything other than info on tumors which havent been found on any scans I've had. Thinking its just a reaction of what's going on rather than pointing to anything. Any input would be appreciated.

Thanks for the info. My doc has been gone for two week??? Hopefully she will be back tomorrow. She had mentioned the QSART so i am sure that is next. Does it matter though I have no problems sweating?

I sure would like to figure out my throbbing chest. Hate being able to feel every heart beat.

Thanks for the info. My doc has been gone for two week??? Hopefully she will be back tomorrow. She had mentioned the QSART so i am sure that is next. Does it matter though I have no problems sweating?

I sure would like to figure out my throbbing chest. Hate being able to feel every heart beat.

Lewis, do you take propanolol to increase your low blood pressure? You said that it helps stabilize your bp but I'm confused as that is usually prescribed for hypERtension.

Yes I take it for low blood pressure. It stabilizes it more evenly. I was told it only lowers blood pressure if taken over 40mg a day. I take 10mg twice a day. Haven't had one that 90/40 bp reading ever since. Stays pretty stable at 130/70

I have had this, very annoying. Also nerve pain in my tongue and lips. Also the vibration goes up into my sinuses at times. Very weird.

I just found this supplement if you think you have methylation problems. I haven't tried it yet.http://www.amazon.com/gp/aw/d/B00822JNTC/ref=ox_sc_act_image_1?ie=UTF8&psc=1&smid=A2TW2XLT5W4EN7

The doctor doing the emg told me they can see the small nerves on the emg test but Just not very in depth. He told me they usually do the emg first than recommend the small fiber biopsy if they can tell that the small fibers aren't responding. However I had already had the sfn test done and it was done on the area I have the most pain. I went through the entire peripheral neuropathy list with my neurologist and hit tested for every single thing on that list. But seeing now that I don't have actual neuropathy I need a new list of things that cause nerve pain without having neuropathy. I think the qsart Is on the list of tests my doctor wants. I don't know if it matters but I have no problems sweating whether it be to much or to little, I feel its no different than it was before I started having problems so I don't know if this even matters to whether or not it will show anything?

Also I didn't have a tbi, no autoimmune issues according to my rheumatologist, no illness according to infectious disease. I did have chemotherapy 16 years ago but the emg showed no nerve damage from that and my oncologist said this is a separate issue because the chemo wouldn't make problems show up like this years later, it would have been right away. Still though I have nothing else to blame it on other than that poison.

Thanks for the information. Just want to be a little more prepared when I go back to my doctor. I should have mentioned that I do have nerve pain but no neuropathy (according to the emg). I dont have eds or mcas and my doctor wouldn't test me for MTHFR but maybe I can convince her to do it now.

I had a small fiber biopsy and emg done. Both said they were normal with no nerve damage. Everything I have read indicated that having dysautonomia means there is nerve damage and can be seen in these tests. Does not having nerve damage point to a specific cause for my dysautonomia? I feel like I am missing something here. Anyone else experience this?

I take propranolol, it has helped stabilize my bp a bit. Also excersize gives me a jump start.

Saw Dr. Cortez today. It was very interesting to go to a doctor that knew more than I did about my dysautonomia. She has ordered some more autonomic specific testing and am very hopeful I can get this either figured out or at the very least a better treatment.

Salt lake city

Just saw my cardiologist and asked for a referral to a dysautonomia specialist and she informed me they just brought in a specialist here in Utah. I have yet to get an appointment and they are only seeing patients one day a week but am excited that maybe they can help me. This may be old news but it's the first I heard.

I tried searching the web but didn't cone up with much. I know there are certain heavy metals and toxins that could be poisonous to the nervous system. The reason I ask is every one of my family members has some sort of neurological issues going on mine being alot worse. Is there something that could be coming from the ground around my house or from my house? We have lived in this house for 3 years which is when all my problems started. How could I get the house or ground tested and for what? I have been tested from the neurologist for heavy metal poisoning and they came up with nothing. Thanks.

I had surgery in May, the anaesthesia really set me back, took me a couple months to get back to where I was before the surgery. It was an abdominal surgery. The benefits of the surgery were worth it, just took a long time to recover and I couldn't take pain meds cause they made my dysautonomia even worse.

If it is hot water I personally avoid them. Last time I thought I would just stick my feet in and that brought on lots of problems probably due to pooling.

To be honest, I don't know what I have and neither does the 4 neurologists and 4 cardiologists I have seen. They have said I have parathesia, peripheral neuropathy and autonomic neuropathy although I haven't had any test to prove any of it except a failed ttt. Really tired of going to doctors that can't help. I will ask about the QSART test. Thanks the info.

In my quest to find what's causing my dysautonomia I read that autonomic dysfunction = small fiber neuropathy. I had a skin biopsy done and it came back normal despite the peripheral and autonomic neuropathy I have. Does this lead to a clue of what might be causing it? Anyone have similar test results?

I always drink a liter of water before getting out of bed, helps me