lewis

Have you been tested for small fiber neuropathy? Small fiber neuropathy is a common cause of POTS, and can be caused by chemotherapy.

If you are interested, I can post more information on drugs and supplements that can aid in peripheral nerve cell repair.

I haven't been tested. The 4 different neurologists I saw didn't do a single test ( other than blood test) since they thought that my nerve pain was just sensory. Since I wasn't showing any sign of numbness or weakness they didn't think the tests would show anything.

I tried just about all the usual supplements with no positive results. None of the doctors I have seen recommended any supplements. So I would be interested in the information you have.

Trying to find out if there is any way to test if my autonomic dysfunction came from chemotherapy I had 15 years ago (Hodgkins disease). I just recently started having autonomic problems last Sept. I just want to make sure something else isn't missed since I was doing fine for the passed 15 years and then one day I woke up and everything wasn't fine anymore. Also if it is from chemotherapy, is there anything I can take to improve my situation specifically related to rebuilding chemo causing damage? I can't seem to find much that helps but found lots of things that make it worse. I just recently got diagnosed about a month ago with borderline POTS, vasovagal syncope but definietly have all the syndrome condition of POTS.

but it really seemed to get worse after a flu shot in 2010. I also had neurological symptoms start then (nerve pain, numbness, tingling).

I started to get some slight nueropathy my feet. Went in to see a PCP and he ran some tests and said we should give you a flu shot while your here. The next day I was 1000 times worse and been headed down hill since.

Do any of you have a hiatial hernia? There is a connection between the vagus nerve and a hiatial hernia. Eating will increase gas in the colon and temporarily worsen your hernia by pushing up the stomach, potentially further impacting the vagus nerve and causing autonomic dysfunction. Sometimes the vagus nerve can become impinged with a hiatial hernia.

I have one of these, however my doctors don't seem to think that it could in any way be causing sympathetic dysfunction and my blood vessels to be dilating. I was very curious about it for awhile. Some of it would make sense since every single time I burp it causes my heart to skip a beat.

Lewis, what do you do for exercise in the morning?

Recumbent stationary bike mostly.

I also limit my evening meals to cereal specifically gluten free cereal with coconut milk. Thats the only thing I have found that helped.

I was having these adrenaline type surges as well with no physco connection. I started propranadol 3 days ago and it has really helped. Feel like a muffler has been put on everything and haven't been edgy and having adrenaline type issues and it has not lowered my blood pressure except right after the first dose which came back up after excersizing and has stayed up ever since. Also what are TTT levels? I tried to search for it and came up with nothing.

I dread excersizing in the morning but have noticed it boosts my blood pressure. I don;t drink caffeine but wondered if it would give me an early boost in the morning.

I got am app for my phone, so far it is helping. Thanks!

its really weird how this works. I am the same way. it was very interesting to me that I worked graveyards this past week and I wondered how it would work out. turns out the sleep pattern didn't change a thing as far as how I felt during the time of day. I wake up at 4 pm and felt good right from waking up however got worse the closer I got to morning and the worst I felt was the same time I usually wake up with a racing hasty at 4am. I sure would like to know why

I began to have a new very debilitating and annoying symptom. Electronic devices( Tv, computer, phone ) have began to cause me alot of pain. After a minute I start getting increased nerve pain in my feet, then after another minute I start getting fasiculations all over and then come the palpitations. Its debilitating because I can't continue to search and learn what is causing all of this. its annoying because I can't relax and watch a movie and can hardly send a text to my wife sometimes. I know that it isn't just the light because driving at night oncoming headlights don't bother me. Anyone else experience this? Time for a break, my body is going crazy!

I took benfothiamine for a bit until I realized it was making my symptoms worse. In fact any B vitamins made me worse. Took me awhile but B vitamins are vasodilators which is probably why they made things feel worse.

Just seeing if anyone has experienced this or might know what is going on? My worked schedule changed and I had to start night shift work. I was very anxious and thought I was going to have to quit my job. However out had given me a vacation from my health. My pots has disappeared. No more palpitations, no racing heart, no orthostatic intolerance, no problems emptying bladder, no dizziness, no acid reflux, no nerve pain in my feet, no gurggling guts. Still have a little anxiety. would life to know why so I can replicate itfor the days I am not working nights. Only other thing I notice is I retain water better when straying up All night.

also had it constantly whole on a couple different anti biotics

I had some like that usually after eating and reclining in a chair. happened when I was on a holter monitor and they said it didn't show anything abnormal. weird stuff

thanks for the help. currently on no meds but will try the beta blocker and will ask about getting a sleep study. most my symptoms are worse during my sleep since I can control them during the day with water and salt

It sounds like it some "misfiring" in the transition to wakefulness. My transition problems seam to come after I wake up. I feel fine initially. For a moment. Then the fun begins.

Cortisol levels are the highest in the morning. I imagine it varies with your sleep schedule instead of being set at a particular time. For many 4am may be a low point. Maybe not for you.

This is how I wake most days. I am dreaming and all of a sudden I am wide awake and I think, why am i awake.then a minute will pass and the fun begins. Have you found any help for it?

Yes - to prevent this, talk to your physician about taking a bedtime/nighttime dose of phenobarbital

I will look into this. Xanax works very well for me but I have the kind of personality that tends to get addicted to things easily and am scared of the addiction so I limit it to one use a week so I only get one full night of sleep a week. From a quick preview it looks like this drug isn't as addictive as xanax?

Thanks for the replies! I have been trying to find an answer to help this for what seems like a really long time. I guess it happens pretty regularly at 4 am because I go to bed at the same time every day. I stayed up late night and it waited until 6 am. This made me realize that it most likely always happens when I have been to sleep for 5.5 hours. My work is forcing me to do shift work started sunday night. It will be really interesting how the change will affect me. Definitely not looking forward to it.

I too get the chattering teeth. If I try to hold me teeth close together without touching they just sit there and chatter. I think it has to do with something affecting the nerves. I tried effexor and it made it alot worse. I also getting sensations along with the chatter sometimes and the only way I can explain it is it feels like I am opening my mouth really wide and biting on a big steel ball eventhough my mouth may be closed. pretty weird.

I am going on almost 7 moths of being woke up at 4 am every single night. I have tried to figure out the why so I can get it to stop. Sometimes its every hour but most nights its right around 4am. I wake with a racing heart/ beating funny, gurggling guts and shocking nerve pain in my feet. It usually lasts 20-30 minutes and then I am freezing cold and can go back to sleep. Unfortunately I wake up at 5 am to go to work. If I could get past this it would grealty improve my quality of life. What I have learned is cortisol levels are at the lowest at this time. What is also interesting is everyday at 4pm my heart would skip a beat. It did this for 3 months straight but has since quit most of the time. I am not sure what is going on but think my sympathetic nervous system is overactive for some reason. Anyone else experience this?

Been getting this lately, would sure like to find out how to get it to quit. Mine seems to do it when looking around or from my keyboard to the screen. Don't like.

Peppermint oil and lemon oil has worked for me, Just a small drop in my water( don't use plastic cup or bottle). Carafate is also good.

_{Try taking some deep breathes when this happens, for some reason it makes mine go away.}