E Soskis

The major cause of autonomic malfunction is diabetes - it fries the nervous system from chronically elevated blood sugar- therefore, the major cause of "cardiac autonomic neuropathy" is diabetes. It is not a disease of the heart but, of the nervous system that innervates the heart. Whenever nerves to the heart are damaged, then there can be all sort of problems like irregular heart beat and rhythms. There are other causes - I have AAG which is an autoimmune disorder. The antibodies produced by my whacky immune system are destroying and shutting down the nervous system - my heart is involved. I lost my intrinsic heart rate a few years ago due to the damage from the antibodies. Different areas of the heart take over when normal pathways are damaged. The lower chamber of my heart began to set my new heart rate which was 20-40 beats/minute. This required a pacemaker or a new "electrical" system to stimulate a normal heart beat. Unfortunately, once the heart is involved, the damage cannot be reversed - apparently these nerves just don't regenerate or recover. The progression is unstoppable at this time but, it has been slowed down by different treatments (IV IG and Plasmapheresis) - my cardiologist says to just keep on going - we treat the symptoms that crop up and continue to attempt to slow the progression.... I wouldn't dwell on whether or not you "might" get this. The best offense is a good defense. If you are diabetic, keep your blood sugars under control. Exercise and strengthen your heart muscle as much as possible. Manage whatever disease you have as much as you can and just....live....

I've attempted to respond to this several times - I really don't know how to say what I want to say about guilt - so, I'll just say this: guilt is a stronghold that should not be allowed to take up residence in your mind. - cast it down and recognize it for what it is - don't let it take you down - stay positive - and as the British say..."keep calm and carry on"......

I'm into my 3rd year of plasmapheresis and previously had a year of IVIG - I think you are right Spinner, the plasmapheresis is beginning to wear off. I did ask my doc about the next step and he wants me to go back into the hospital and begin IVIG again - I loathe this option because when I stopped the first time, I was having terrible allergic responses to the IVIG and could not tolerate a normal rate of infusion - it took all day just to get a little infused - I just don't think I can go back to that existence. I was in the hospital for a whole day once a week. With the loading dose, I experienced aseptic meningitis and became terribly ill - do not think IVIG is the answer to the AAG. If I choose to become immunosuppressed, I will have to retire as I work in the hospital. Even though I am at a "desk" job, I still am required to move about the hospital and occasionally interact with patients in our trauma area. I can't be immunosuppressed and continue my job. I hope the flourinef helps you - I was on it for awhile and didn't have a tremendously positive response - it seems to either help a lot or not much at all. Blue, I'm glad you are sweating now - that sounds like improvement and a move toward the right direction. I guess the bottom line is we have to manage our diseases on a daily basis and do the best we can to prevent the flares understanding we will flare at times for no apparent reason - this is a day-to-day disease that requires constant vigilance and generally just feeling kind of yucky all the time......

Have you had more than a GI work-up? - what about CT scans or ultrasounds? - any lab work to track down the cause of the swollen nodes? - what is your WBC count? - did a pathologist look at a blood smear for clumps of red cells or clotting disorders? - how about your spleen - is it enlarged? - what about your liver? - are your liver function tests OK? - I mean really, there is so much more that needs to be considered if this problem is not going away with the treatment tried already. Swollen lymph glands mean your immune system is working over-time - so, why is it so active? - has it been activated due to an infection or another disease process? - If your physician is not willing to work you up properly, ask for a referral to someone who will - how about an internal medicine specialist? - the key here is that you are not getting progressively better but, progressively worse.....and whatever it is, it is triggering a flare of your POTS so...something's just not quite right.....talk to your doc....

Ack! Drug companies! There is some kind of conspiracy in our country with drugs, costs, and supplies. Provigil is a "no-no" according to the FDA so....drug company develops a "new" version called..."Nuvigil" - conveniently, it is a thousand times the cost of the original drug allegedly because the drug company has to spend so much money to "create" a new drug....yet, it is the same drug as before, just packaged differently! Oh by the way, there is a national shortage of almost every drug so conveniently....it costs more to get a drug because of the "critical" shortage - if you can even get the drug. Somehow, the more common the drug, the more it is in shortage but, the expensive drugs are readily available....just smells of conspiracy and kickbacks.....

Celebrate the victories! It's these small accomplishments that keep us going! Good for you!

I wonder myself about "triggers". I used to know what would bring on a flare but now, not so sure. I'm with you Spinner - heat is a definite problem. I guess it is because we don't perspire so, we can't cool down like "normal" people. I just am at the point that I think my nervous system is so messed up that just about anything can "trigger" a type of flare. I was sitting at my desk at work today when I suddenly felt like I was going to die - not anxiety - just bottomed-out my blood pressure, ears began ringing loudly, lost the ability to focus my eyes, couldn't talk straight, turned an exquisite shade of pale. I told my co-workers that I was in trouble, popped an extra midodrine, drank a Propel, and waited for my BP to rise enough so I could drive home. I really don't have any idea what triggered this particular flare. These episodes are occurring more frequently and without warning - sometimes lasting days. Go figure.....

It takes twice as long for us to recover from surgery as a "normal" person. If the physician did not address the dysautonomia while you were in the hospital, it will just take that much longer to recover. Anesthesia really shuts down the autonomic nervous system and it just takes time to crank back up. Since you had abdominal surgery, I would image the gastroparesis is flaring which makes it difficult to get enough nutrition to heal properly. If you are taking in fluids well and still feel dizzy when you get up, you are probably still pooling blood and your blood vessels are floppy. I don't know what dysautonomia medications you take but, you may need to have them adjusted during this recovery period. I always have to take more midodrine after surgery or a major illness. I usually end up having to take IV fluids as well - no matter how much I drink, it just isn't enough. The compression garments help but, may be too uncomfortable around your abdomen right now. Pain medication is a real catch-22: it shuts down gastric emptying thereby worsening the gastroparesis yet, you need something for surgical pain. Your MD can advise you the type of pain medication that may be best for you but, I always start with a small portion of what is ordered - I shave off a piece of a pain pill and put it with a Tylenol or advil-like medication - it usually provides pretty good relief but with fewer side effects - I would talk to your doctor about your symptoms and see if this would help. I know your surgery was unexpected but, if you have a game plan before surgery to deal with the dysautonomia, you will fare better after surgery. As far as going back to work, your physician should be able to give you more time off understanding that dysautonomia takes "normal" recovery times off the table - there is no "normal" for us! Good luck and hope you heal soon.

Yes - I have lots of dysrhythmias (irregular beats) - some cause pain - some take my breath away - other than taking beta blocker, there is nothing else I can do about them - the beta blocker helps keep the numbers down - I also have multiple heart rate drops every day so, I have a pacemaker to keep my rate up. My cardiologist told me I was not allowed to fly until I had my pacemaker inserted - guess the high altitude could cause an increase in symptoms and syncope

I like heat better than cold - don't tolerate extremes of either one - yes, my BP drops dramatically if I become overheated - living in the South with average daily temps of 90+ and very humid - "air you can wear", I don't go outside very much - might be better to explore non-pharmaceutical solutions - like extra hydration (lots of oral fluids) - dressing lightly - keep a fan around at all times - if you can afford it or don't live with an elderly person, turn the air down to a cool temp- most of all, don't go outside except when necessary - it's too hot! (when nighttime temperatures don't go below 81-degrees...it is definitely too hot)

I don't know what type sedative you are speaking of - I do know that anesthetics, pain killers, sedatives, hypnotics and other similar compounds react differently in patients with dysautonomia. I once read an article written for anesthesiologists in a medical journal that detailed how a patient with dysautonomia compares to a "normal" patient. There were quite a few warnings about different induction agents and related compounds that were contraindicated in those of us with dysautonomia. I remember waking up during many operative procedures - sure surprised the OR staff! Now, I insist the anesthesiologist look up the appropriate medications and induction methods for dysautonomia before any operative procedure and things have gone better ever since.

I too have had one side of my body turn red and flushed while the other side remained a blanched white color. - particularly in my legs. When I queried the neurologist about it he said that with autonomic failure, it is not uncommon to see strange nervous system reactions - it all depends upon which part of the nervous system is messing up at the time - he also said that Raynaud's will cause some skin disturbances like this.

Ahh...the heat and humidity of the South - very difficult not to get overheated in a short amount of time. I try to stay indoors as much as possible - have fans all around the house. Sometimes I "cheat" and don't wear all the compression undergarments - especially when I know I have to be out more than usual in the heat. Once overheated however, it takes awhile to re-group. I also become light-headed, weak, and nauseated. The temperature in the house stays at 78 degrees so, I sometimes find relief sitting in my car with the A/C on high!

Hum....I have noticed that when I flare, it may be a different body system that is involved - I think it depends upon which nerve pathway is messing up. Some flares I have symptoms of a low-grade flu-like syndrome. Some flares I have head, neck, back pain. Other times, I have increased brain fog, visual disturbances, and trouble with balance. So, I'm thinking that the symptoms I experience are based upon whatever part of the nervous system is going whacky at the time. Dysautonomia in and of itself produces some common, every day symptoms but, a flare-up may cause them to worsen beyond the ordinary..... As far a midodrine goes, I take it based upon how I feel - I never check my BP - I just know when I feel light-headed, weak, and extremely fatigued, my blood pressure is dropping or has dropped and I need midodrine. I wouldn't think a systolic BP of 102 is too "high" for midodrine - it just depends upon how you feel at that level. I know patients that have kidney failure and live with extremely high blood pressure - when their pressure is at what is considered a "normal" level, they are symptomatic and pre-syncopal just like we are when our BP is frightfully low......it's all in perspective and how you feel.......

I would bet it has something to do with the inability to sweat. One of the symptoms of dysautonomia is lack of sweating. I can no longer tolerate the heat more than a few minutes. Since I cannot sweat or perspire, I quickly overheat and will become physically ill if I don't do something to cool off. This really puts a damper on my summer outdoor activities - I basically don't go outside more than a few minutes at a time and turn down invitations for outdoor activities in the heat of the day.

I have always run a low-grade fever (99-100.9) - it is part of the autoimmune dysfunction - problematic now because I have a pacemaker, central lines, and infusaport so, I'm supposed to go to the ER with a "fever" - also, I know a flare-up is coming on when I begin to ache all over, get a mild sore throat, and feel like I'm coming down with a cold or flu - so, I ignore temperature until it hits 101 and brace myself for a dysautonomia crisis when I start feeling malaise and achy......

What a joy to wear compression garments in the sweltering heat of the South! - just kidding - they are a real hassle to get on, wear, and get off however....wearing them helps me function better than not wearing them - so, the benefits outweigh the negatives. I also find that the abdominal compression is better than just the lower leg - I think it has something to do with assisting to limit the pooling of blood in the mesenteric system of the abdomen (the large blood vessels) - it also helps with the blasted gastroparesis bloating - I guess without the abdominal compression garments, I would look like I swallowed a basketball or was about 12 months pregnant!

I was an aerobic queen back in my 30's and early 40's - an hour every day - even taught a little - now, nothing - some days can walk a little - try to walk about 5-10 minutes every day just to keep moving some - can't bend over without nearly passing out - can't do more than a little stroll otherwise, will be stretched out in a neighbor's yard - climbing stairs is OK for one flight, after that, nothing doing - MD says not to worry about exercise and just do what I can - still bothers me that I have less strength and endurance than my 88 year old mother!

Absolutely depression is part of dysautonomia. My very first symptom of this illness was a severe depression. The brain is an organ made up of nerves and chemical reactions. When the nervous system is assaulted, the brain reacts in unusual ways: depression, hyperactivity, "fog", sleeplessness, etc.... I suspect that many of the "mental illnesses" from which people suffer are in fact symptoms of an underlying disease process. I truly hope one day that there will be testing that can uncover these hidden diseases - perhaps genetic testing and therapies will be revealing in time.....In the meantime, hang in there - certain medications are helpful as well as a great support system - I think those of us with dysautonomia are just destined to have episodes of feeling depressed and sad due to the nature of our disease - it's just important to deal with it as soon as it starts-up.......

Beta blockers are used for a variety of conditions: migraines, blood pressure control, stage-fright, excessive social anxiety, cardiac arrhythmia suppression, and for strengthening the cardiovascular system and heartbeat. I remember in nursing school, we were taught to be very careful with beta blockers and patients that have asthma. Apparently, an asthma attack can be triggered by beta blockers in certain people who take certain asthma drugs. I would imagine that considering the wide-variety of usages for beta blockers on different types of conditions, there are many varying and unusual side-effects along with certain tolerance issues. I mean, if a professional piano performer takes low dose beta blockers to keep their hands from sweating so much, then that person may have a different side effect that someone who takes a beta blocker for say, blood pressure control. I have been on beta blockers for many years and have relatively few side effects. I have noticed it enhances the dry mouth I already experience from dysautonomia. At times, I want to blame some of my fatigue on the beta blocker even though dysautonomia is known to cause excessive fatigue. I would say keep an active list of the various symptoms you experience while on medications and make notations of changes when your dosages and medications are changed - it will help your physician and you pin down which medication is causing which symptom(s).

I have profound bradycardia from the AAG - my heart rate dropped to 20-40 beats/minute - so, on the tilt table test, instead of my heart rate increasing, it actually decreased - somehow I remained conscious long enough to hear the physician counting down my heart rate 50, 40, 20...then, I passed out. Needless to say, I ended up with a pacemaker. I remain hypotensive - I take midodrine regularly just to keep my systolic BP above 100. I can stay conscious now with a systolic BP of 60 and have even walked out of the hospital with a 60/40 BP - the body can adapt - not fun but, adaptable......probably shouldn't try to walk or drive with a BP that low - kind of scrambles the old 'noggin!

Oh Kim, I'm so sorry you have all these problems. I have autoimmune-related autonomic failure. There are so many symptoms that everyone with any type of AF experience, it is overwhelming. I also have occasional tremors in one hand or another - I get transient numbness and tingling in my feet, or one foot, or hands, etc...I also have almost permanent numbness in the left side of my face. When the nervous system is under attack, there are just weird symptoms and problems related to the particular area that is taking the hit. The breathing issues usually come from poor circulation and perfusion to your chest and upper body. It kind of feels like the breathing is restricted - something tight around the chest that is preventing you from breathing well. Some relief can be obtained by taking a recumbent position - like in a recliner - this allows for more blood flow to the chest. Others say that abdominal compression garments help by keeping the blood vessels from being so floppy in your abdomen thereby pushing up the blood to the chest, neck, and head. You may also have chronic neck and shoulder pain for the same reason. I wish you the best in your treatments - I'm close to having some type of feeding tube as well - gastroparesis is a real problem for those of us with AF. This forum is a great place to learn about the various types of AF and also to help realize you are not alone in your struggles.

What does you doctor mean when he says "if you want to"? - does he not think beta blockers would really help? - Is he wary of even a low-dose trial? - What are his concerns about beta blockers? - I take 40mg of propranolol every 4 hours - round the clock - it has really helped me with improved cardiac function and strengthening as well as suppress the arrhythmias that come with AAG - I do have a pacemaker and don't have to worry about too slow of a heart rate but, I was placed on beta blockers long before I received the pacemaker. AAG causes the heart rate to decrease rather than increase as in POTS so over time, my natural heart rate dropped to 20-40 beats per minute requiring the pacemaker - not because of the beta blockers.

I say do whatever works! If you need a power chair or wheelchair, then go for it! AAG takes away most of your normal life so you might as well do anything you can to improve how you live and function.

I think that dysautonomia in general causes excessive dryness of mouth, eyes, and throat. My mouth is so very dry that by the evening, my tongue actually curls up. I keep bottles of water and mints around but, it is terribly uncomfortable. It also interferes with swallowing. I too have food stick in my throat just from dryness. Lately, I have wondered if I am aspirating some of my food - especially liquids. I get short of breath when I eat and cough excessively after eating. I do choke on food pretty regularly and have episodes where I simply cannot swallow well - like during flares of the AAG. The neurologist says that if all of this keeps up, I'll end up with a feeding tube of some sort. I don't look forward to making that decision - I'm not sure I will go down that route. Naomi, I think I would act like a raccoon and be sure you have enough moisture in your mouth before attempting to eat - raccoons dunk all their food in water before eating because they don't normally have enough saliva to swallow (unless they are rabid!)