I am new to the site; but it seems more is known here about this illness the any dr I have seen since 1992. I have NCS and I am losing feeling in my hands (turn blue) and feet. I have low to normal BP but a very low pulse 50-60
and I am bed ridden and on oxygen about 23 hours per day right now and in and out of an un responsive state. I do not have seizures. I was denied in home care due to "safety issues". In my last trip to ER the Dr said I he had no choice but to put a breathing tube in me and place me a in skilled nursing if I am unresponsive and not breathing well next time.
My top heart Dr said he had no option but to re do my tilt and try a pacemaker.My last tilt was in 2001 and I flat lined at 6 minutes. I have also tried IV therapy with several failed picc lines.I am very tough and strong willed but I seem to live in terror 24/7 now with no respite.
Has anyone had a response to a pacemaker with
NCS or know why I am having such neuropathy and not breathing...Thank you for the help

Hi Rosie,
My last illness began in 1992. It took 9 years to get a tilt table test. I had a sleep study in 2006 I think. negative for apnea. As I have constant syncope I am told to place myself on oxygen set at 2.5. It does not help anymore. The breathing problem began about 2 years ago
and has been progresive. I have very slow respiration and all say its not med related and they have no clue what it is.
Meds: same for long time
1.5 mg of xanax at night (maintenance dose)
10 mg of ambiem at night
8 mg of rozerem at night
20 mg of baclofen at night

Rosie,
I suspected the same as you do; but the doctors say my doses are too low and even on the low doses I am still not sleeping at night. The autonomic nervous system also controls our breathing.I suspect it may be both. I do not have a specialist in NCS; just the one cardio who knows some about it and wants to try the pacemaker.

Thanks again,

I can relate. I was totally bed ridden for five years. Now I am half homebound, half bed ridden. This there something wrong with your lungs. Usually people do not suffer from breathing that much.. I have a pacemaker and was put on beta blockers which helped me walk. Your heart rate is so low, you would probably need a pacemaker. Ask your cardiologist if you need a pacemaker due to medicine lowering your heart, or because of your heart. By the way I love your name, my husband is kenneth, my son is kenneth, and my father in law is kenneth.
If you need just plain support I am always here. my email is la745773@mindspring.com

I will be thinking of you, hopeing you will feel better.

I agree with Rosie, you should see a specialist. I have NCS and PAF, I also have breathing problems and use oxygen. But I am NOT bed-bound and I am able to function, I use a walker or a cane on better days.

I was evaluated for a pacemaker several times and was told it would not help. One doctor said "You will just be an unconscious person with a slow heart beat on the floor with a pacemaker". Then she added "I will be richer because I put in an unnecessary pacemaker".
At least she was honest. I know each and everyone of us is different, but I would not jump the gun on this without a specialist opinion.

Rosie, Baxter, Xena
Thank you for the great advice. My cardio doc is a nice honest man, and said that the worst situtaion is that I would pass out at a higher pulse rate. I will ask him if he will share his fee with me of being a guinea pig..
Have any of you ever heard of person with Dys having syncopal episodes while being Ivd,on O2, and being supine? All the docs I have seen locally state that it is not possible in that situation and it must be siezures of some type.
Thanks,
Kenneth

Kenneth,
I often have near syncope episodes while lying down. My understanding is that it is a blood pooling issue or something else going on (like a blood sugar drop)....not fun at all. I hope you can find the answers you need.....all the best to you.

I just went through "Hell" at my local hospital.
My cardio md did a new tilt table test. I flat lined at 6 minutes and was non responsive and then had a bad convulsion or grand mal seizure. I was non responsivness so still placed a dual chamber Medtronic Pacemaker anyway and w/o IV pain meds. Back in the recovery room last night I did feel better with pain meds and my heart hit 122 and I was stable. Right after I ate a small breakfast this AM my symptoms came back just as bad as before. I told him about the symptoms and he said that just could NOT be and I should not be reading on the internet about Syncope and Dysautonomia and leave my diagnosis and treatment to Drs. I am back in bed barely breathing and passing out with loss of feeling in my hands and legs again and now with what seems to be a useless pacemaker.I am trying to move to Sacramento, California. Does anyone know of a specialist there that knows what they are doing.I am not able to travel to the other centers as I am bed ridden and have constant syncopal episodes and severe peripheral neuropathy making it hard to stand or walk.
Thanks,
Kenneth

Kenneth,
Breathing is not regulated by the ANS, it is regulated by the brain stem and C02 concentrations that baro-receptors should recognize and make you breathe.
Where is the neurologist in your life? Have they ruled out chiari malformation in which the brainstem is pushing out your occipital foaramen? I have also just recently seen the story of a young boy whose body did not get the signals of the CO2 increase, and he had to live on a respirator, but not in total care.
They have you on seizure med, Baclofen, they have you on Ambien which I have seen many poor outcomes on than good ones with patients,
I just tried Rozeram and that made me sick...but what makes me sicker is their "guessing" at seizures.
I'm a Med/Surg RN with a dual lead DDDR pacer, but I had good reason for the insert, sick sinus syndrome. You actually have a more "livable" bradycardia at 50-60bpm, and low to average BP...what the hell are they doing? I am not a doctor, but it doesn't take too much med training on this one, imo, that your problem most likely lies in your respiratory control center. No pacer will fix that. If you are having "seizures" as they GUESS, you should have an EEG that blew the charts away. Please tell me you have had a thorough neuro work-up, including EEG, MRI of head and C-spine, CT scan with and without contrast on brain/spinal cord veins and arteries. Your depressed respiratory rate has to be addressed by forced 02 therapy, be it a CPAP or ventilator. Your neuropathy and Grand Mal on the TTT are explainable by lack of oxygen. What are your 02 sats of extremities when they are blue? They can stick nasal cannula on you at 6L tops, or a mask at 15L, but if you're not inhaling(respirating), with appropriate oxygen exchange in your lungs, then you're losing your life, Kenneth. There's no way you can sleep when you have to be awake to know to take a breath. You must be out of your mind exhausted. This is just not right by the medical standards I know.
Pardon my French, but the frickin' good cardio guy may be nice and trying to understand, but it's time to fire him and get help. imo. How dare he tell you not to search online for answers, ##!!! My advice is get to Stanford or UCLA, and get neurologist and pulmonologist teams on your case. Small town USA is difficult to get good care in, esp. when the doctor is failing you and still wants to be God.
There are no words to describe the outrage I'm in right now. I don't know your whole story, I may be way off the mark, but I have lost patients who look perfectly normal with the damage to their brain stem eventually taking their lives because their respirations decrease then cease. I was at my father-in-law's bedside when he died this way last December from a brain stem compression due to herniation of his brain from a large, bleeding subdural hematoma. I have an eight yr. old pt. that was a near-drowning at 3 that has the bare minimum viable respiratory rate due to the death of cells in her brain from lack of 02. They've been giving her Baclofen and Depakene for years without rechecking her function, and it turns out she isn't having seizures any more at all, and those meds have caused severe osteoporosis and severe, severe scoliosis. But, because she is a growing child, she has re-wired some. God, I don't know what else I can possibly say, I can't even imagine a hospital discharging you rather than transferring you to a bigger hospital that can address your breathing!
My rant here is not to scare the life out of you, but to keep the fight for life fired up in you! I'd get help first,get correctly diagnosed, then worry about a move later.I'm praying, C.

C.
I have been fully tested for siezures a few years ago at Sutter Neuro Sutter Center in Sacramneto. They said I had a progressive loss of consciousnous in a non responsive state but I was breathing fine and not hypoxic.I know it comes from syncope; I just cant talk and pass out.He most likely left me on the tilt table too long and I went hypoxic and it is called a syncopal convulsion and I have had them before. I did do research before and there are a few responders with the new type pacemaker and meds;and thats how he convinced me. He will take it back out if I not improve in time.My hands are not blue from lack of oxygen as my sats are high.It is a peripheral neuropapthy of some type. I do agree about the meds as they are all CNS depressants and will get a new sleep study done when in Sacramento. I am doing my best for as weak as I am; as I am bed ridden about 23 hours per day now and only have me in my home to take care of me.
Thanks again,
Kenneth

Are you online. Would you like a private chat?

Baxter

I have no idea how to doa private chat unless you are on AOL

Kenneth,
O.K., I'll be a little bit calmer now, as I have more info. I have to take my pregnant daughter to Phoenix for her two week check up and ultrasound of my grandson Tristan. (now 28wks, yay)
I have a problem knowing ANYONE is at home alone...I remember those days years ago.
Have you ever tried Trazadone for sleep? It is technically an anti-depressive, but it puts me out. I already take 200mg Seroquel to prevent migraines, and 10 - 15mg Diazepam to prevent my "atypical night seizures of unknown origin", but with all the stress of deaths, investigations, lawsuit, illnesses, then this high risk pregnancy (my daughter has a mild kidney disease), and baby being total shock - dad bailed....Well, I just couldn't sleep without the Traz.
Perpipheral neuropathy is part of the illness as I know you will know as Raynaud's is too. (I have Ray.) At least I know you are not lying there hypoxic all over. I do think you have enough knowledge of your needs to allow you a sliding scale of 02 L/min. Rather than a set no., but that is only my opinion, not your docs.
Wish me luck on the 2 1/2 hr drive down to sweltering Phoenix and back. Thank God we live in the day of air conditioning. I will continue praying, C.

Kenneth---
It would be absolutely absurd and crazy to get surgery before having a full work up of blood vitamin and amino acid levels, growth hormone, cortisol levels, Adenine level, Epinephrene level, T3 & T4 (NOT just TSH), complete urine testing.

If your doctor hasn't done this yet then he's not doing his job. Period.

Oh they'll tell you they did a full work up and everything has been tested for. But that's only the basic standard blood work. Which, does not include most of the things I listed above. And never take they're word for it. You need to have printed out copies of all the lab work they've done on you to date.

If I had waited around for the doctors to figure it all out, I'd still be in the hospital right now. I once had the head of cardiology at johns hopkins tell me there was no other testing he could do besides surgery. He hadn't even given me a tilt table yet Let alone tested my vitamin and amino acid levels. I don't regret telling him to take a hike.

This is a service they are doing you. You are paying your doctor, and by that you are a customer. If you're not satisfied with the service than go to someone else. And if a doctor is trying to talk you into surgery prior to doing the testing I listed above, then it is no different than a mechanic trying to talk you into repairs you don't need on your car.

A good Dysautonomia doctor is one that not only believes you, but is your comrade against a common enemy. No question is too silly. No idea is too stupid.

Kenneth,

I was just researching to find a doc nearby our new home(no luck) but, did find info on a doc who looks promising in Santa Monica, CA. Not sure what your status is about moving to CA, but if you're intersted, here's her info.

Frisca Yan-Go MD. Neurophysiology and Neurology, UCLA Medical Center, Santa Monica,CA.
(310) 319-4063

Her info says she has a special interest in CNS dysfunctions...

If you are heading that way, she might be a place to start.

Stay strong,
sheri