Autonomic Dysfunction disabling, sycope constant, with constant fatigue, and professional say NO pacemaker will help.

[Goliadman]

Wife, 57 yrs old, had recent open 360 Fundoplication surgery, followed within 3 wks by constant weakness, constant syncope, orthostatic hypOtension, BP drops to 90/40, pulse rate drops to 40 Bpm. With this constant, she is listless and very tired all day. First thoughts are possible vagal nerve side effects from the surgery. Within another 2 weeks, a large kidney stone required another general anesthesia which precipitates a dangerous drop in BP, and pulse rates to 40 bpm or lower. Tests later run at another clinic lead one Cardiologist to suggest pacemaker. Second opinion by a cardiologist said NO to pacemaker due to autonomic dysfunction diagnosis after tilt table, and other studes were made. His opinion is pacemaker will NOT help this condition as it originate in the brain stemm. Midodrine, Fiorinef for dehydration have made patient sicker, and she D/C due to bad side effects and severe fatigue. Her condition is no better after 6 months. Thus no pacemaker, and meds are ineffective. What is this Autonomic Dysfunction and how else can it be treated? We don't know where to turn. Celiac is possible but no definite agreement was made on that. What now?

[txtony]

well by the way your describing her bp dropping that low and pulse at 40, suggest a complete heart block which in the case of the 1st cardiologist suggestion for a pacemaker. but 2nd opinion suggest problem is w/brain stem. possible, considering surgey was recently done.
im imaging the 2nd md suggested medication and keep track of her.  which md do you trust.see the brain stem has always control of breathing and heart rate and bp. but the internal electrical system in the heart controls the pacing. if that is failing, then she indeed would need a pacemaker.  what are your thoughts though if you dont mind me asking?

[Goliadman]

Tony, the 2nd Cardiologist did a lot of studies, and specializes in electrophysiology. So Im told these guys nail the Autonomic Dysfunction source better. He did not believe a pacemaker will help or correct this particular problem. She has no block, no heart condition otherwise, and he says it's brain in origin, controlled only by Midodrine, Fiorinef for K depletion and dehydration, after the fundoplication surgery, and they also switched her from Prozac to Effexor and Remeron for I guess some depression, restless leg, and inability to sleep well. NOw I'm very concerned because she is in Ohio, 1200 miles from home at her mother's place, and says the Midodrine makes her "shaky" and the fiorinef makes her feel very bad, and even worse. Effexor has bad withdrawal effects if taken very long, and she said none of these usual drugs for treating this form of syncope are working. So she had to stop them. But the fatigue is still there, and it's not normal. Her syncope has stopped mainly due to her having to stay inactive, and lying around or sitting a lot. She can't go out and do much at all. So I'm very worried, and the cariologists seem to differ. But this last one is supposed to be an expert, and says the pacemaker will NOT help this condition. So I'm on pins and needles about what to do next. I've told her to go back to the doc, but she is sick of all the doctors and no improvement. I don't know what to think. But this seems to be a different form of autonomic dysfunction of brain origin.

[txtony]

yeah, you know a cardiologist specializing in electrophisiology would be the best bet. these guys do know what they are talking about. just hang in there, sooner than later, it should turn around, the body needs to heel...

[Goliadman]

TY Tony,
   Well, it's been a long haul, depression over our daughter's systemic lupus, and now my wife is suffering now for over 7 months. How long does this Autonomic Dysfunction take to  heal? What is it doesn't? I'm sitting here in limbo. No meds work, and she has what seems like Chronic Fatigue Syndrome, or maybe something else that causes such frequent syncope problems. It has made her very weak. I'm just disturbed that there seem to be no cures for this.

[Icesha]

If you are still on this forum, I want to talk to you! This is the exact problem I have...

[Kestra]

I have autonomic dysfunction as well.  What treatments have you tried?

[mvPearl]

Autonomic dysfunction is becoming a commonly recognized stress induced disorder, and certainly surgery is stress.  What may be happening here is an endocrine system that is unable to correct electrolyte balance, with a resulting chronic deficiency of minerals/electrolytes.  In the above patient, if the K+ was low, Florinef would be expected to worsen the condition because it will raise Na+ at the expense of K+ (Florinef is effectively aldosterone).   A global electrolyte deficiency and/or imbalance would be expected to limit function of muscle, even myocardium, and certainly result in fatigue.  This patient, and more and more patients like this one, would benefit from reading a brilliant book on healing this type of imbalance  entitled "Adrenal Fatigue, 21st Century Stress Syndrome," by James Wilson, ND, PhD, which is full excellent science as well as philosophy.

[scadnama]

I have autonomic dysfunction as well. I was fitted with a pacemaker about 7 weeks ago. I also see an electrophysiologist, she is the one who diagnosed the condition after a tilt table test, and decided that the pacemaker was neccessary. Before the pacemaker, I was having daily headaches, fatigue, dizziness, and syncope.  Every since the surgery, I have felt GREAT! I take Florinef to control my blood pressure, and a potassium supplement. You may want to see a different EP doctor to get a second opinion. I know that this condition is very hard to live with, and if your wife has the problems that I had, a pacemaker may very well help her too. Any questions, please feel free to contact me.

[mastkids]

Please understand that autonomic dysfunction is not necessarily a stress response, though it often is. My autonomic dysfunction is accompanied by low cortisol level. But i also have a chronically elevated eosinophil count.
I was having episodes of descending loss of muscle tone to the point that I could not maintain upright posture, paraparesis of skeletal muscles, without loss  of consciousness. The first sign of an episode was when a family member would note that the skin looked like it was sliding off my face. Once, my daughter commented my voice sounded like Micky Mouse. I lost peripheral vision, felt like i could breathe with only the upper third of my lungs, got hives on chest and upper back, facial flushing with definite borders around nose and mouth. Time seemed to speed up so that hours seemed like minutes. After 3 hours the episode would pass. The next few days I had alternating periods of being hot and sweaty and being cold with teeth chattering. Visits to emergency rooms were more humiliating than helpful.
After a lifetime of being very active (even hyperactive), I was becoming increasingly fatigued to the point of sleeping whenever I was not working; I had cut back to 2 days a week. Walking 3 blocks left me wondering if I'd be able to walk back again. The med combinations have given me back my energy.
I have severe (respiratory and/or gastrointestinal symptoms) intolerances to food, aspirin and NSAIDS, sulfites, temperature (cold), tactile, particulates in the air and react systemically.
I get headaches almost every day though those can be relieved with regular osteopathic manipulation under the occiputs of my skull (vagus nerve).
I have periods of dizziness which last for hours to days.
Some days i have trouble clearing my throat despite multiple attempts.
Awakening for 2 hours in the middle of the night occurs sporatically. There is nothing to do but get up and use up some energy because lying there does not work.
I cannot tell when i get sick because my respiratory and gastrointestinal symptoms are so dramatic and fluctuating that acute illness feels no different to me than daily life.
Treatment is aimed at keeping a steady autonomic state. What has been working (knock on wood) for 6 months is a combination of high dose of sympathomimetic (Dexedrine) and low dose of parasympathomimetic (Urecholine) and antihypertensive (Angiotensin II inhibitor: all other types of antihypertensives made symptoms worse rather than better). Chromalin sodium (Nasalcrom and Gastrocrom) work for acute issues and, despite indications that they must be used daily, I find relief within minutes. I take Bentyl Syrup if the acute episode feels particularly scary. I have been taking Wellbutrin and Ambien for about 10 years.

I'd be interested in feedback. I dread a recurrence of the episodes or of the chronic fatigue. And it would be nice to have an idea of prognosis or even a diagnosis...

[katiecan]

Stress is a trigger for the onset/display of symptoms of autonomic dysfunction, NOT a cause of the condition. But days of dizziness sounds like POTS. You can research it on the net.  There is also info on Addison's Disease which says to clinically "Suspect when fatigue, light headedness is accompanied by weight loss (weight gain excludes the diagnosis). This suspicion is strengthened when accompanied by postural hypotension, hyperpigmentation, hyperkalemia, hyponatremia and hypoglycemia. Some patients may present with esinophilia. Other symptoms include vomiting and abdominal pain.”  My 14-year-old was diagnosed with autonomic dysfunction when she was less than a year old, after being treated for SIDS-at-risk [apnea, bradycardia, tachycardia, reflux and MUCH more]. What has worked for her is sublingual belladonna elixir - it regulates her autonomic responses somehow. Her MD explains it clearly. I don't care about the explanation [vagal nerve, etc.], but I'm REALLY glad it works. She hasn't taken it everyday for years, now. The only time she needs it now is for sudden emergencies or changes caused by one of the triggering environmental elements.  With a Rx, belladonna, a compound, and a natural medicine without additives that can trigger side-effects, can be purchased at a compounding pharmacy. We found that almost every other medication has side-effects. One of the things we used it for was "lethargy," when she would alternate between being ok or a little up, and deep, bone-tiredness. When she was "tired," she couldn't think or respond.  Belladonna evened that out. The ans is what brings the body back to stasis after ANY change, and what adjusts the body to the environment, internally and externally. But when it doesn't work right, its own attempts to adjust can cause wide swings - rapid heart rate can default to very slow heart rate to higher, back and forth like a pendulum, and things like that -- and anything we use to adjust it --- DOES THE SAME THING! People with autonomic dysfunction RESPOND TO STRESS by displaying increased symptoms. Stress produces the flight/fight response - adrenal increased, body gearing up -- but in most people there is a rapid return to normal or stasis. In people with ans dysfunction, it doesn't work that way. A sudden startle can escalate or default into sudden cardiac arrest. Some people have a few of the "sydnromes," like POTS; others have wide-spectrum failures. There are some things that work really well. For example, using a bounce chair or small trampoline for some reason works on the ans. When astronauts return from space, they have "temporary" autonomic dysfunction, and that’s how the bounce chair was invented, I understand. Keeping hydrated, and I do mean drinking every hour - water, and not caffeine drinks, will help, and eating every 2 hours when awake, to keep the digestive system perking along, also helps. Another thing is using live culture yogurt - who knows why? Many MDs prescribe additional salt, like salt tabs or rock salt for ice cream, to help increase the fluid volume of your blood. Exercising to keep your leg muscles toned and strong and your heart rate in a good place, helps; many who are late-diagnosed have to exercise in water to keep from triggering attacks. You may find tub baths helpful. Some people have tried bariatric chambers. YOU MUST AVOID TOBACCO, alcohol, chemicals, etc. Some people find those baby sleep tapes with the heartbeat extremely effective. They play them all night long. Sometimes you can keep your body from reacting to a  stimulus, you see, by presenting a dominant constant stimulus that it continually reacts to. Getting overheated [for some this means 74 degrees F or above] or getting cold; making changes between temperatures, either too often or too rapidly;  encountering strong odors --- many things can trigger your ans to respond, and to respond erratically. It's like your body is a little car with a battery and a regulator. Usually, as you drive and use your battery charge, the regulator replaces that and charges your battery up. If you have autonomic dysfunction, it's like your regulator doesn't work or worse works only intermittently- so you drive for a while, then run out of energy -- and capability to make the necessary rapid bodily responses to external and internal changes. You may crash, you may go into arrest, you may fog out --or have any one of multiple symptoms. Or not. Sometimes your regulator works.  You have to totally take control of your environment and your life. However, by doing that, you can live more comfortably - and it's certainly worth the time and trouble. There is no known cure for autonomic dysfunction.

[MJ117]

Tony, I have an autonomic dysfunction - Neurally Mediated Syncope. I have been diagnosed for 3 years. I see an electrophysiologist. Sounds like your wife has pretty much the same thing. Goes by different names; neurally cardiogenic syncope, Orthostatic Intolerance to name a few. I have tried to take all the meds for this condition. I even went into the hospital trying to find something I could tolerate to no avail. Many of the meds given for this condition cause the blood pressure to drop. Being that I had very low blood pressure (like your wife) those meds were ruled out from the get go. I am super sensitive to medication and cannot tolerate any for this condition. My Dr. did put me on an antidepressant which has helped raise my blood pressure but it still drops with my heart rate. After 3 years he has decided to put in a pacemaker which will be done in about a month. Believe me I know how hard and frustrating it is. I feel like my life has been stripped away. I am praying the pacemaker will make a big difference. I haven't been able to work the last 2 years. From what I've read people who have the low heart rate with this condition have seen positive results. So, stay after your electrophysiologist. Mine told me a pacemaker was the last resort especially if the patient is fairy young. I just turned 50. I told him I was ready to try anything. I think I've forgotten what normal feels like.
M Jenkins

[puta]

I am having the exact same symptoms. I am 32 y/o and a nurse. It is affecting my work and family time. I still work but it's very demanding. I was taking the midodrine and just started fiorinef. I don't know what to do. The cardio says petite women just have low blood pressure, but mine has been running 84/48.  My pulse is in low 50's. Someone help.