lorrie

Yes, the week long seizure study was checking for epilepsy. I was in Vanderbilt's epilepsy center hooked to a lot of wires and continuous monitoring system for eight days. I had a complete workup for epilepsy with flashing lights in my face and the works...nothing. My POTS doctor thinks my losing control of my bowels may be due to my body "shutting down" after an episode. He said it was kind of like when someone dies and the body relaxes...not a nice thought, but sort of makes sense I guess. The thing that keeps me wondering about my diagnosis is the part where I wake up in the middle of an episode. I did read in the NCS section on this site that some people have episode while lying down...just strange to me.

Yes, I have this happen all the time.

Thank you all for the words of encouragement. I am going to a doctor who specializes in POTS and have been firmly diagnosed with POTS and possible NCS. The thing is, I haven't found many people who awaken having episodes like mine and I can stand most of the time without problems. I think the fact it has taken over 15 years to get to this diagnosis that I'm afraid they are still missing something. I read the things many of you are going through and it sounds slightly the same, yet different. I have had the tilt table test, a nerve study, a sleep study, a heart cath, swallow test, scopes, scans, MRI, EEG, EKG, ultrasounds, 24 hour urine tests, a week long seizure study, stress test, nuclear stress test, holter monitor, event monitor, nuclear stomach emptying test, the list goes on and on... So confused....

I think my emotions are worse now, but it has been such a long battle to get a diagnosis and with a recent change in meds, I don't know which it is. I just know I cry alot now.

I live in a fairly small town and have had the same PCP for years. He is a wonderful guy and wants to help, but just doesn't know what to do. I had to finally get fed up and seek out my own specialist and found one on this site. I made the appointment and after a few visits with him sorting through tons of history and symptoms and lots of testing he ordered, I got the diagnosis of POTS and possibly NCS. It took so long to get here and now that I am, I'm not sure what to do. I feel more confused the more I read and learn. Here is my story: A few years after I married, I was at my in-law's home with my husband playing cards and I started feeling strange and got up to go to the bathroom and ended up waking up on the floor with all of them standing over me. I lost control of my bowels and had a headache so bad I could hardly open my eyes. I spent a week in the hospital with the doctors focusing on my bowel issue. I had scopes and tons of scans and nothing... About 3 months later, I was washing dishes and turned to put away a plate and woke to find my dog licking me in the face and was home alone. I tried to get up and would pass out again. I was in the floor about an hour until my husband got home from work. Another week long stay in the hospital and tons of tests showed nothing. I have passed out in public restrooms with the door locked and have busted my head open many times. About 1/2 the time, I lose control of my bowels. sometimes I urinate on myself. I have ripped fixtures off walls and had firemen take many doors off hinges to get to me. I had to go through the humiliation of having blood gases drawn to check for drug use one time because the EMT didn't believe my husband who told them I do this often...I was NOT on drugs by the way. I often wake up from sleep having an episode and when I describe the symptoms, the first thing a doctor will say is that I am having panic attacks. I knew I was not and became so frustrated that they won't even consider that something else is going on. The ironic thing is that they finally made me question myself and I went to a pyscho therapist and she is the only one who said it was NOT panic attacks. She pushed for my PCP to send me to someone else. Here are some of my symptoms: flushed feeling like all my blood is draining from my body, profuse sweating, BP that can be all over the map from extreme hi to extreme low, pounding chest, severe headache, lose of bowel control, skin turns bright red, arms go numb, shoulders hurt, eyes become very bloodshot, stomach cramps, nausea, vomiting, and severe chills once I begin to feel better, a strong need to sleep immediately following the episode and sometimes confusion and cry easily. It usually takes 24 hours or more to recover. I have passed out at work, church, shopping, just about everywhere you can think of. It went from a few times a year to most recently several times a week. I am afraid I won't be able to work, but hope that isn't the case. I know I have rambled, but I really want to know if anyone else has this type of episodes. I trust the POTS doctor I found, but even he is stumped by some of my symptoms. He just says everyone is different and that everything still isn't known about this disorder. Thanks for listening and sorry for the rambling.

Thanks for the welcome and for the help. I try to stay upbeat and usually have good luck with that...just had a rough week. It's nice to have a place to get it off my chest.

I suppose it is natural to suffer from depression when your body is failing you and you have a new scary diagnosis. I have really been trying to keep myself in check. I have not done well at that this week. My best friend blew a disc in her back and is now paralyzed from the waist down. I have been trying to help her and lift her spirits and I think taking on her problems has been good in a way to keep my mind off my problems, but it has also seemed to put me in a state depression that I am having a hard time overcoming even with Zoloft. My camping trip with my husband and daughter was a disaster and I have been in bed a couple of days trying to recover from the symptoms the heat stirred up. I think that has given me time to think about her situation and my health and now I only want to curl up in a ball and sleep. The guilt I feel when I am in this stage of my POTS also adds to the depression. I feel like I am cheating my daughter out of a mother like she deserves. She is only 7 and she is so good about letting me rest when I need to, but I hate that I can't be running and jumping with her. Sorry...just needed to vent where people have a chance of understanding how hard life gets at times. My family tries to understand, but they just don't know the half of it. I know this will pass, but I wonder if I should mention this extra depression to my doctor? Thanks for listening.

I wish I had asked this question before my camping trip last weekend. The heat really bothered me and I have been in the bed recovering the last 2 days. My suggestion...drink lots of water and stay in the shade. I didn't do either and paid for it big time. Hope you have a great time.

I am new here and newly diagnosed with POTS. Believe me, my symptoms are NOT new. I have struggled with them for about 15 years or more. I have tons of questions and things I would love to talk with you all about but I will start with this one first... what exactly is the difference in POTS and NCS? The only real difference I have found is that some patients awaken from sleep having an episode with NCS. I do this often and think I have NCS and not POTS. My doctor couldn't really explain the difference.