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Help...it's All So Confusing!


lorrie
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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.

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You have been through quite the long struggle it seems like. I am glad you have found us here, I hope that you find help and comfort in this group.

Your symptoms do sound like they are POTS for the most part to me. But like your doctor said, everyone is different, and that is very true, though everyone here understands each other in many ways, every case of this illness is different and unique to each particular person, so we aren't going to be have the same symptoms necessarily, even though we do have the same illness.

I am pretty tired and need to get to bed, so sorry for not posting more-with perhaps more support and help, but I will try and chat with you soon, I am going on vacation with my family tomorrow and get back Sunday night, so hopefully I can talk with you once I get back, I look forward to getting to know you better!

I hope you are feeling well, or at least well in spirit!

God bless,

Mary

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Hello and welcome. I'm glad you found a place to talk to others with common issues. My daughter, Sara has had many of the problems you mentioned. Shes passed out in JC Penney's , Walmart, etc, etc, She also has what was called "mini seizures" by a neuro. She has these times where she is just not herself, and its kind of suttle, if you dont know her well, you wont notice much. She just does things that are totally out of character. Shes pretty much stopped going anywhere except doctors. Its so hard on her to be in public, sensory overload gets her. She cant handle crowds and noises. Sudden changes upset her, shes had lots of gastrintestinal probs too, as well as bladder probs. The suggestion of a TTT sounds like an excellent idea to me. Much information can be gained from that test. Its not fun, I will tell you that, but its also worth it for the benefit. One more thing, you know your body better than anybody else, so if you dont feel "right" then something is "wrong". Be proactive in your care and dont be afraid to speak up. Finding a good doctor who is willing to go the distance for you is key. This forum has been a godsend for me. I really needed somewhere that I could be understood and have people who knew what I was talking about. You will find lots of friends and lots of information here. Again, welcome and best wishes in your search for answers. Susan :blink:

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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....

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I'm gonna echo here....did you do an EEG and test for epilepsy?

To my knowledge POTS episodes generally don't cause the person to urinate or lose bowel movements while unconscious....but epileptic siezures do. We're all a bit different, but I've fainted more than a thousand times (literally) from POTS, and never peed or pooped. When I tested for epilepsy, they asked me about that, and when I said, no, they were like, "OK, you're in the clear, probably".

You might also be suffering from both POTS and epilepsy. You might be having fainting spells from POTS and siezures from epilepsy at different times.

It's worth checking out with a very good neurologist.

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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.

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possibly similar to me. I have NCS, there were many similarity's between you and I. I do not lose bowel or bladder tone, but certainly everything else. And I do have seizures. Seizures from lack of 02 present as throwing head back, arching back, arms and legs -tonic clonic, sometimes sounds.

I think you should buy this book.

Syncope: Mechanisms and Management (Hardcover)

by Blair P., MD Grubb (Author), Brian Olshansky (Author)

Its by drs for Drs and 99 dollars.

I'll bet it has the answers you need.

I am on Norpace, works GREAt for me.

good luck

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Hi,

Wow, it sounds like an awful lot to deal with! It does sound more like NCS then POTS, but definitely could be both. I agree that the loss of bowel and bladder control etc. are not really a part of POTS, possibly under the overall umbrella of dysautonomia though.

Have they said that it is not part of the narcolepsy? I think there is a seizure that can present a lot like narcolepsy- was that ruled out?

It really does sound like seizure activity, so it is so puzzling that the tests were all negative.

Also, I knew someone once that had BAD migraines and would pass out and wake up hours later having hurt herself and not knowing what happened. She never went into all the details, and actually was not very open about it, but what you described did remind me of her. Could it be migraines? Even without pain? Or atypical type of migraine like an abdominal migraine or something? If you are on certain meds it could mask the pain, but you could still have other symptoms.

Thinking about it some of my really bad NCS type episodes do sound quite a bit like your description, so it could be a very strong NCS reaction?

I hope you get more answers soon and some relief as well! :)

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Pat...thanks for the suggestion on the book. I called my doctor's nurse (my local PCP) and asked them about it and they are so interested in learning more about all this that he is going to order the book. I was impressed with that because I really can't afford it right now.

I drive 2 hours to get to my POTS doctor, so my PCP learning as much as possible will be a huge help.

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ajw4055,

there are causes other then epilepsy for seizures, toxicity and lack of oxygen are 2.

lolo I'm so glad to hear that.

:(

The seizure induced from lack of 02 can be identified by a trained eye. Try to get specific info on your movements, even a video. Epileptic seizures for instance decrease in amplitude- that's from the book. :) The movements become less forceful as the seizure wanes.

In my very amateur opinion you should be asking about the possibility of asystole.

http://www.nymc.edu/fhp/centers/syncope/va...l%20syncope.htm

"Blood pressure and heart rate may plummet precipitously, and asystole may occur. When this happens there is a rapid loss of central nervous system activity and often a dysinhibition of peripheral neurologic responses resulting in muscular movements mimicking a tonic-clonic seizure. "

Its important to understand that epilepsy can't be ruled out either and " Episodes of asystole and bradycardia have been documented as manifestations of left temporal lobe complex partial seizures. These patients experienced either dizziness or syncope. No sudden deaths were reported, but the possibility exists if asystole were to persist. The longest interval was 26 seconds."

http://www.emedicine.com/emerg/topic44.htm

I was Dx with epilepsy and I don't have it. :) I have heart rhythm issues, but thats why I have heard about this stuff.

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I'm no expert, but for what it's worth, I suspect that some of the time it's NCS but some of the time it's something else. And, like some of the others, my guess is a neurological cause like epilepsy. Or can the narcolepsy prolong a faint - I don't know? I have POTS, NCS and I have had seizures, but nothing like you have described. And the recovery time you mention is what really stands out to me; it is much longer than I would expect from a faint.

Did you have one of these episodes whilst you were on the 7 day EEG monitor? If not, the monitoring isn't worth anything and if you are being ill more frequently now, if may be worth repeating if you can. Although flickering lights/lack of sleep etc are used to try to provoke an attack, they rarely do, so again, this doesn't really get you any nearer to a diagnosis.

In the UK we have a centre where 20 or so patients stay until they get a diagnosis (or it can be used to reverse an epilepsy diagnosis which is queried) - individuals are ECG and EEG monitored and literally watched 24hrs a day until enough episodes happen that they can make a diagnosis. I wonder if you have anything similar you could access.

I suppose the other route to go down is identifying and stopping the triggers.

I feel your frustration from the length of time it is taking to get some answers. I'm sorry I can't be more helpful and wish you luck in bringing this to a swift conclusion.

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Thanks Cath! Yes, I had an episode while going through the seizure study. They said it was not a seizure, but the doctor was also no help in determining what it was. He acted as though he had never heard of POTS and had to look on the internet and in medical books.

I was very excited that I had an episode with loss of bowel control while monitored, but it really didn't help after they studied the report. I am having this report sent to my POTS doctor now so he can look over it.

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