IDreamInColor

Hi Michelle, I've had the same problem, my appetite has been nill. I've lost 50 pounds in the past year. I'm been drinking "Ensure" to try to get some decent nutrition. But on my nauseating days I barely eat at all.

These have been going on for 6 years now. I'm going to try to describe it as best as possible. I'm trying to figure out if these are those adrenalin surges that some of you have or if it is something else.

Here goes...

The feeling comes on suddenly, like a wave that comes across my body and gives the "oh god something is about to happen" feeling. That feeling only lasts a few seconds, and then I get a wave a nausea followed straight up with a strange sort of hot feeling that starts in my core and runs up my body and thru my head. It also messes with my vision as well but just slightly, almost like a slight gray out. From beginning to end it only lasts about one minutes, but they tend to happen a few in a row before it stops. They have even woken me up out of sleep,

Truthfully they scare the crap out of me everytime they happen. And being scared stirs up my anxiety.

Do these sound like adrenalin surges, or something completely different?

When I was in the hospital in September prior to the pots diagnosis the doctor put me on fludrocortisone. But after a few weeks it was keeping my blood pressure way too high, so he took me off it.

At my appt last week he told me to go back on the fludorcortisone. But I have yet to do so for fear of making my blood pressure too high again. I'm also very leary about sterioids. I'm afraid of it causing more yeast overgrowth, and lowering my already low immune system, and anything else it might cause.

Do you think it would be ok to just take it every other day, instead of everyday?

First, be sure to get tested for c-diff.

And secondly, I understand exactly what you are going thru. I began having D last August, at first I thought it was a bug that would go away. After two weeks it wasn't going away, and to make a very long story short, I was finally diagnosed with something called "collagenous colitis", also known as "microscopic colitis."

I am not exaggerating when I tell you that I spent all day in the bathroom for over 5 solid months expelling water (sorry, TMI). I was wasting away and felt completely hopeless, I was so sick.

I just want you to be aware of "collagenous colitis" in case your problem does not resolve itself. I'm hoping for you that it's nothing more than a bacterial imbalance caused by the antibiotics and should clear up.

I'm currently researching probiotics. I have been taking one called "sustenex" for over a year now. But there is one called "Nutraelle" that sounds beneficial that I am thinking about trying. Unfortunately it's costly, about $40 for a month supply.

Get well wishes for you hon, I know exactly how debilitating it is {{{{HUGS}}}}

I read somewhere that you shouldn't take the flu shot if you are on florinef because nerve damage can result. Does anyone know if this is a true fact?

I thought i was one of the lucky ones who didnt pass out, but that all changed an hour ago. I got up and walked from my bed and passed out in the hallway. Everything went black and i went down, after that i got very shaky and my legs started jerking and then those strange flushes started. So im sitting here sobbing and having one of those "I cant do this anymore" feelings. I just cant seem to find the strength to deal with better.

Back when I was horrendously sick and undiagnosed in 2005, I had most all of the same symptoms I have having currently with this pots. I had major hair loss back then, and now it's starting again. It's coming out pretty heavily.

I still believe their is more to my illness than just pots, but I doubt I will ever learn what exactly is going on with me. I am wondering if it's possible to experience hair loss with pots? Is that even a remote possibility?

I'm noticing more and more how many of us have thyroid issues. Do you think it's because dysautonomia messes around with the glands in our bodies?

I have graves disease/hyperthyroid. I was diagnosed with graves back in 2004, and at the same time I began having pots symptoms, although the pots was never diagnosed until this past september.

I tried to start a poll on if you have thyroid problems or not, but it wouldn't allow me?

I have graves disease/hyperthyroid. I just want you to know that even if the labs come back as being "in the normal range" she can still have symptoms if her labs were hovering near the normal cut off range.

For example, my labs normal range is .05 to 5.5 on the TSH. However, if my TSH is running at 4 point something I DO have hypothyroid symptoms even though I am in the "normal" range. And same if I am hovering near the lower end at say .10, I will have hyper symptoms.

I feel most normal when it comes to my graves disease if I keep my thyroid at or near a 1.

I'm hoping all of you will participate in sharing your symptoms list. I am very curious on how many of the same symptoms we share, as well as the less common ones that are unique to us.

Please list every symptom, even the small ones that you experience frequently.

Here is my list in no particular order...

__Muscles drawing up, muscles won't relax

__Flushes that begin in upper back and run up thru head

__Diarrhea

__Constipation

__Headaches/Migraines

__Hand/Arm Tremors

__Legs Jerking Uncontrollably

__Loss of appetite

__Dehydration

__Heart Palpitations

__Extreme Weakness/Fatigue

__Weakness in arms and legs

__Anxiety attacks

__Depression

__Tinnitus

__Night Sweats

__Pressure in Temples

__Clammy Hands and Feet

__Sensitive to being touched

__Sensitive to smells

__Minimal urine output

__Increased urine output

__Chest Pains

__Shortness of Breath

__Eye auras

__Dizzyness/Vertigo

__Head feels funny

__Stabbing pains in ears

__Hearing tiny bubbles popping in my right ear

__Pressure in ears

__Muffled hearing upon standing up

__Always cold, hard time getting warm

__Nausea

__Eye Dizziness, this is where my eyes themselves feel dizzy

__Pinky and outter hand going numb

__Blurry Vision

__Unstable Temperature

__Intensified hearing, as if each noise "swells" hard to describe

__Abdomen Pain

__Inflammation in mouth, taste buds and gums

__Muscle atrophy

__Dilated Pupils

__Hard Time Waking up from Naps

I think that's all of them,lol...subject to change daily

I was prescribed paxil after my diagnosis this past September. I took it about 6 years ago as well. I have tried many of the ssri's over the years, and paxil was the one that always worked best for me. I don't have any side effects from it except for more vivid intense dreams, but that's not a bad thing. Some people will have "start up" side effects at first, but after a few weeks those symptoms should subside for most people.

I've had alot of eye involvement with this pots, and recently I've noticed my pupils are fully dilated and look freaky. Does anyone else have this problem?

I just got my compression stockings, the doctor wrote a prescription for the 15-20 compression factor, and truthfully I don't feel like they are helping at all, I don't see any difference in my pulse or otherwise.

What exactly are they suppose to do?

I'm on paxil and experiencing the same thing, the dreams are soooo real and vivid,and like you sometimes I wonder if it was a dream or did it really happen. I love paxil dreams,lol

It's been a little unsteady lately, ranging from 97 to 99. But last night I randomly took my temp and it was 95.5 it has never dipped that low.

Is this something that happens with pots? Or something else going on?

My temp bounces back and forth, it can be 97.1, and an hour later it jumps to 99.9.

I've only had one episode of sleep paralysis, it happened when I was a teenager but I remember it clearly. I had fallen asleep during the afternoon, and I remember waking up, but my body wouldn't move, I tried to scream but nothing would come out. I layed there fully awake, but fully paralyzed,,oh my goodness it was terrifying. Thank goodness it has never happened again so far.

I hope you can find some relief for it, I feel for you, it is very scary.

{{{{hugs}}}}

This has been going on for 6 years. The muscles in my neck and side of my face pull up and tense, I have to mentally tell myself to "let the muscles go," and I can relax them for a minute, but they will draw right back up. I can't keep them relaxed. I used to have it in my arms and legs as well, but that seems to be replaced with the myoclonic jerks instead.

Add me to the list, I've been having a terrible time with my pinky and outter hand going numb constantly. I just chalked it up to something autonomic.

I take a half of a vicodin once a month for the hormonal migraines. I took it this evening, and then an hour later I did my blood pressure and pulse while lying down, sitting up, and standing up (i've been keeping track of this to show the doctor)...anyway...normally my pulse jumps 20 to 30 points from lying down to standing up. But this time it only jumped 14 points an hour after the 1/2 vicodin, so now I'm wondering if vicodin has an effect on pulse? Would anyone happen to know?

I do like the ensures, I'm been drinking one everyday for a couple weeks, and it helps. They have been my lifesaver when I'm really bad.

My appetite has been very poor, I've lost 50 pounds in the past year. I know I'm not getting very good nutrition which could only cause more problems. I'm thinking I might benefit from a daily multi vitamin, but with my body completely screwed up from pots, and graves disease and microscopic colitis I'm almost afraid to take anything.

Can anyone recommend a good vitamin? Is there anything I need to avoid?

I have an appointment in a couple days with my cardiologist, I'm going to ask him about a prescription for compression stockings. I'm sure hoping they will allow me to stay standing for longer than 7-10 minutes.

No, I don't think it's being caused from scratching at night, it's baffling. I found the very first scratch while drying off after a shower, it was on my hip and when I was drying that area it felt bruised and I looked at it and seen the scratch. I can't figure it out...seven scratches in one week, strange.

I'm sure this is totally unrelated to POTS, but who knows, this disease is so strange maybe this has happened to someone here as well. This past month I have been really bad sick, the worst I've ever been with pots. Well,...on seven occasions this past week I have discovered unexplained scratches on my body. The first two I simply blew off and thought I must have scratched myself somehow and didn't know it. But then more and more kept appearing, it's kind of freaky. And even more strange is how fast they dissappear, normally with me I heal ridiculously slow even from minor scratches, but these are staying for a day and the next day they are gone and new ones appear, it just doesn't make sense. They are 2-3 inches long, and a few of them looked like a very narrow scratch like what you would get from say brushing against a branch, and the others look more like a fingernail scratch, wider. They all drew dots of blood along the scratch.

Weird, huh?