E Soskis

You also might look into less invasive procedures for replacing valves. There is a new machine that allows a valve to be replaced without opening the chest. It is like having an arteriogram where a catheter is threaded up through the groin and the valve is replaced in a minimally invasive way. I don't know a lot about it but, I know that the first patient at my hospital to receive a valve this way was in her 90's and she went home after 3 days and is working in her garden again just a few weeks post the procedure! Pretty amazing!

I agree with the anesthesia advice - there are certain ways and methods for induction of anesthesia on patients with dysautonomia - most anesthesiologists are not aware of the techniques - I insisted the last time I had surgery that my anesthesiologist look up the information. You also need to let the staff know about your condition on the floor in which you recover. After my last arteriogram, the staff thought I was dying just because I had prolonged low blood pressure - once they understood all I needed was extra IV fluid, I began to get better.

Good luck - let us know how it all goes - we'll all be thinking of you!

Flying changes pressures within your body - even when the cabin is pressurized, it is different than being on the ground. I was not allowed to fly for several years - until my cardiologist inserted a pacemaker - once I got the pacer, I can fly again. I used to want to be a flight nurse but, I got sicker than most of the patients so, that didn't work out.

I always get this when I get very tired or am very stressed - it is a little fluttery twitch that is barely noticable to anyone else but, feels like I'm winking at everyone that walks by! It eventually gets better for me after a few days of rest and reduction in stress level. I kind of use it as my check and balance - if I'm twitching more than usual, I need to do something to get more rest or reduce stress.....

Wow! What a horrible experience - I'm sorry - I've been through some terrible experiences also - I suspect we all have! I really appreciate it when a health professional simply tells me they don't know or understand what is going on - a simple "I don't know but, I'll see what I can find out" goes a long way......in the meantime, it is very discouraging and kind of makes you want to run away and hide for awhile.....don't give up - keep digging - you'll eventually find someone who is interested in helping you out and can point you in the right direction

Yes - I drive - sometimes shouldn't but, I'm the only one in the household that can drive - my elderly mother depends upon me to run all the errands, take her places, and do the shopping. It's real hard when I feel awful - I just don't have a choice. People say they will help but, all have had something else to do when I have really needed assistance - so, guess I'll just keep on driving.......

Wow! I'm glad (also sorry) that I am not the only one who has this! I was trying to watch TV last night when - Wham! all of a sudden the room turned sideways and I had the sinking feeling like my brain had fallen out and was bouncing around on the floor. It only lasts a few moments but, it comes out of the blue. Today at dinner I had a hint of the same thing - I felt the room begin to turn then it straightened back out again. I sure would like to know what causes these type of symptoms. The nurse in me says "you're about to have a stroke" but, the dysautonomia creature inside says "Hah - it's all part of the game"!

I used to sing in a Ladie's Ensemble and in the Church Choir - I had to give it up about a year and a half ago due to the dysautonomia. The best I can figure out is that intrathoracic pressures are altered when singing. To sing properly, it requires control of the diaphragm and rate of exhalation. These both cause changes in the pressures within the chest causing a decrease blood supply and subsequent dizziness, lightheadedness, and near syncope. I tried sitting on a bar-type stool to sing but, it didn't help with the change in blood volume in the chest. So, no more singing for me.

I am, however, a pianist and accompany a men's gospel quartet - we have a lot of fun performing - they are great! I'm also playing in other venues (weddings, funerals, receptions, etc..) so, I have not totally given up music!

Dysautonomia is a roller coaster ride for sure! I'm sorry you are having all of this - so much in so short of a time - hang in there - take it one day at a time and know you are not alone - we've all been there and will be there again......roller coaster.....

If you have never been on steroids before (prednisone), just be aware of potential side effects of irritability, difficulty sleeping, and excessive hunger. These are more likely with high dose than a low dose. Anytime I've been on a short round of steroids I have been grumpy, irritable, fidigity, and hungry! If it works for you, then it is worth it!

Wow! and who said miracles don't happen! How blessed you are - I am so happy for you

I'm an ER nurse of 30+ years now working in trauma - we are able to take "stat" blood pressures with our machines - every 1 minute. It is rare to need a BP that often and it is not good for the patient's arm. Frequent inflation of the BP cuff constricts the arm and can cause capillary breakage and damage - I myself have blood pressure taken every 15 minutes during plasma exchange treatments and I always leave with broken capillaries where the cuff has been placed.

Blood pressure is not a constant. Just like heart rate, it is fluctuatant and ever-changing. It must be this way to adjust to our physiological status and the demands of the body in whatever activity we are engaged. Even standing still requires BP and Heart Rate to continually adjust to maintain an upright stance. Those of us with orthostatic hypotension are particularly challenged at maintaining BP and Heart Rate while standing upright - most of the time, we can't maintain and have passing out or near syncopal episodes.

Home BP machines are notoriously inaccurate - some of the more expensive models made by name-brand companies are more accurate. It is more the trend of the readings than the actual readings that are important. If you are taking your BP every minute, every 5 minutes, or whatever, and you notice a steady trend down (lowering BP or heart rate) then it is significant. If you are getting reading that are all over the place and don't seem to correlate or make sense, then, they probably are false readings. Go by how you feel physiologically. If your readings are low and you feel awful, weak, tired, sweaty, and near syncope, then your machine is fairly accurate - you indeed have low BP. If your readings are low and you feel fine - your machine is off. It is the trend that is important - just like when the physician is attempting to diagnose someone with high BP - readings are taken frequently over a couple of weeks to be sure and weed-out false readings.

Hum, curious - I note the other meds you are on and any of them could cause those symptoms - do you have symptoms of an allergic response? - rash, itching, flushing, tightness in ears, throat issues, sore, etc...? If the propranolol is a new drug for you and you started those symptoms after the first dose or two, then I would be concerned about a drug allergy. You definitely need to run this by your physician - if you develop signs of anaphylaxis (severe allergic reaction), you need to be in the ER - it's worth noting that you can tolerate a drug for a long time then all of a sudden develop an allergic reaction to it - seemingly out of the blue - so, I guess anything is possible. Dysautonomia itself can cause unusual tingling and prickling sensation in extremities but flushed with skin burning is more likely some type of reaction - also can't rule out some odd blood disorder caused by one of your prescription meds....

Let us know what your MD has to say - if it is a problelm with the propranolol, I would like to know what kind of reaction it is as I am on 40 mg of propranolol every 4 hours - Hum.....

Unfortunately, I think a year wait is normal. I waited a little over a year to be seen at Vanderbilt.

Head-bobbing can be a sign of parasympathetic involvement - look up information on "essential tremors" - it kind of sounds like that but, I'm not the expert - I had a friend with this type of symptom and I've worked with at least 2 other females who have had them -

Irregular, pounding heart beat is also a symptom of dysautonomia. When cardiac nervous tissue is involved, you can have "pounding", irregular beats, and funky rhythms - In my case, my heart has slowed down and some of my normal pathways are gone so, the electrical impulses jump around trying to find an open pathway in which to travel causing pounding, and many irregular rhythms - unnerving at times and always annoying....

I'll be 52 in a couple of weeks and have to say that the AAG is progressive. My cardiologist explained to me that I function at a certain level - when I "crash", I never quite return to the level at which I was functioning before the "crash" - I return to a lower level of functioning - this will keep going until I eventually don't return to any sort of functional level. I have found his explanation to be true in my case. I am grateful for the plasmaphoresis treatments as I seem to be able to bounce-back better than before treatments. I definitely know I am not where I used to be - my heart is really failing me pretty fast -

It would be nice to see research studies devoted to dysautonomia, causes, treatments, etc...The study that keyed in the neurologist to my AAG was only comprised of 7 people - that was all the researchers could find!

Generally, parasympathetic dysfunction causes paresthesias - I'm not familiar with overstimulation - I am only experienced in shut-down - the autoimmune dysfunction I have causes antibodies to attach to the nerve endings and shuts the particular neural pathway involved down or slows it way down. Classis Raynaud's disease is failure of the parasympathetic nervous system and it stems from many causes. Since the autonomic nervous system is comprised of both the sympathetic and parasympathetic nervous system, it stands to reason that both eventually become involved with autonomic "failure".

How does the Mestinon/pyridostigmine work for you? - I was on it for a few years but, my physicians pulled me off and don't want to put me back on it even though I have asked - not sure why they think it is so bad for me - it helped a little but, not tremendously.

You describe your paresthesias as coming and going? - that is typical - they wax and wane - some days are worse than others and some days, not bad at all - those are my favorite days! Hope you remain paresthesia-free - it is a real nuisance to feel like you have bugs crawling over your feet or down your leg, etc...

Yes - thoracic hypoperfusion can cause a feeling of inability to breathe - I get the feeling of a tight constrictive band around my chest which makes breathing difficult - it was explained to me that when that happens, I am not getting enough blood flow to my chest - it is the same principle with neck pain and hypoperfusion to the neck and shoulders

The parasympathetic system can cause many types of paresthesias - one of the first signs of dysautonomia I ever experienced was left facial numbness and tingling - it didn't go away and now 20+ years later, I still have it. As the dysautonomia progresses, both sympathetic and parasympathetic systems malfunction more and more. It was only last year that my parasympathetic system began to fail. I can have bouts of numbness and tingling on one side of the body and not the other. I can be mottled and cold on one side and not the other. My legs can tingle and prickle then turn a lovely shade of lavender. One hand can feel numb and cold or just a random finger will turn white and feel dead. It is worse in the winter but, can occur in a really cold room.

Each day is a new adventure in autonomic dysfunction!

I produce antibodies that attach to various nerve endings in various organ systems - one of these systems is my cardiovascular system - I have all sorts of electrical malfunctions including PVC's. A PVC here and there is normal in most people, especially as we age. Runs of PVC's that cause you to be symptomatic is not normal and needs to be investigated by your cardiologist or electrophysiologist. The reason you become symptomatic is that you cannot sustain effective circulation with the abnormal heart rhythm (lots of PVC's in a row) - the only time I actually saw V-Tach on my monitor was as I was about to pass out - there are treatments for these runs of v-tach or multiple PVC's if you are symptomatic and you need to see your MD to thoroughly check it out.

Automatic BP machines are not designed to capture extremely low or high readings - even the ones used in the ER only are good for "normal" readings - when your BP or heart rate bottoms out, the machine can't detect your heart rate to correlate a BP reading so, it reads "error" - the ones I use in trauma will eventually "get to know you" if it can take enough readings to calibrate to whatever physiological status is present - so, I always teach staff to "treat the patient not the monitor" - if you feel weak, sweaty, and dizzy and are getting an "error" reading, you need to lie down until your blood pressure comes back up - if you can feel your pulse, you will probably feel that it is either way too low or way too fast (I don't know what your specific symptoms are) - sorry you are having these problems - it sure isn't very fun

The one year I did not take the flu shot, I (of course) came down with the flu that turned into pneumonia - I was sick a month over the holidays - pretty awful. I now always take the flu shot and this year, took the pneumonia shot also. At the end of November, I'll take the "shingles" shot - any illness I can prevent or lessen the severity of is OK by me. I think any illness has the potential to stir-up the dysautonomia - even a simple "cold" isn't quite so simple with dysautonomia -

Michelle - hope you feel better real soon - drink plenty of fluids and rest - Blessings and Healing to you!

Stress makes everything so much worse - and it does not have to be negative stress - just stress in general - I wish I knew the secret to living "stress-free" but, alas, I don't. Fatigue can heighten my perception of stress. I try to remember this: HALT! (hungry, angry, lonely, tired) - If I am experiencing any of these, I halt and take a step back before I completely lose my cookies!

Oh yeah - one minute feel decent, next minute feel rotten - is not always associated with any particular activity - I can be sitting at my desk working on the computer and end up slumped over for no apparent "reason". The only control I have is to avoid known triggers: walking long distances, standing up for too long, strenuous activity, lifting up my arms, etc....

Don't feel alone - this seems to be a characteristic of dysautonomia - I, like you, wish people had more compassion and understanding that we don't have control of this situation. - it is discouraging when we are dismissed as lazy, crazy, and "histrionic"....

Hang in there StephL - you are in this for the long haul - I began to have my first symptoms of dysautonomia in my early 20's and it wasn't until I was 46 years old that a physician diagnosed me with dysautonomia - I've been blown-off by some of the best testing centers - I've been told I was everything from depressed to flat out crazy - You are having many of the same symptoms I have experienced. The thing that caught my eye was your slow heart rate. I wasn't diagnosed with dysautonomia until my resting heart rate was 20-40 beats per minute. You could very well have a type of autoimmune dysautonomia - whether or not you have antibodies present in your lab tests. I think of the antibody test as similar to a cardiac stress test: positive is definitely positivie but, negative doesn't mean squat - you could still have autoimmune dysfunction or in the case of a stress test, heart disease with negative stress test.

Lyme disease can cause autonomic dysfunction and dysautonomia - it is usually a late symptom. If you have not been tested, it wouldn't hurt to check but, probably is not your cause. We all develop degenerative disease in our spine as we age - some more than others. I don't know how old you are or what type of work you do but, it is not uncommon to have disc disease in professions that require a lot of physical demands: nursing, paramedic, construction, etc....

Remember, your husband is frustrated because men are used to solving problems and "fixing" things. They don't like to leave loose ends and they are very concrete thinkers. If you tell your husband you feel bad, he wants to do something to fix it and move on quickly to something else. It is kind of how men are hard-wired - you know, the men are from mars, women from venus sort of thing.....

Dysautonomia is a frustrating group of symptoms that can really take a toll on you physically, emotionally, spiritually, and in your relationships. Just try to understand where your family is coming from and their perspective - hopefully, they will let you explain to them how you feel and your perspective. If you work together as a family unit, then your relationship shouldn't unravel. There will be plenty of times your family and husband need your support for things they are going through - so, it's kind of a two-way street!

Sometimes beta blockers actually have the opposite effect than what is expected. With certain dysautonomias, particular autoimmune mediated ones, beta blockers can strengthen the heartbeat, keep the blood pressure elevated, and instead of slowing the heart rate, stabilize it. It does not work for everyone but, when it does, it is great! I take a high dose and have done so much better since taking them - I should qualify this with the fact that I have a pacemaker. Most physicians will not prescribe high dose beta blockers unless there is a pacemaker in place. I have the pacer not because of the beta blockers but, because the autoimmune dysautonomia fried the nervous system to my heart - my rate without pacing is 20-40 beats/minute - a little slow and lazy!

I guess it really depends upon why you were put on midodrine. If your BP is low, then midodrine should help you feel better with less fatigue and more energy. There are some little side effects of tingling scalp, flushing sensation, and occasionally headache (especially if you lie down after taking midodrine).

If you are taking midodrine and your BP is not low, then you could have some pretty awful side effects - since midodrine greatly elevates your BP. You need clarification from your MD about how and when to take the midodrine. Pay attention to when your BP drops so you will have an idea of when the midodrine is needed the most.

For instance, I know that my BP is very low when I get up in the morning so, I always take my dose first thing upon awakening. I also have found that by lunchtime, my BP has dropped again and I need another dose. Any other time, I play it by ear - some days, I feel pretty good and don't need but the two doses. Other days, I feel pretty bad and need more doses. If you are in a "flare", you may need to adjust your times and doses.

You also need to be aware of the limitations on midodrine. You should never lie down after taking a dose - it causes rebound hypertension that can be quite severe. You should never take midodrine close to bedtime - also for the same reason. Once you are able to recognize your triggers for low BP and symptoms of low BP, then you will better be able to figure out when to take the midodrine and adjust doseages accordingly (with guidance by your physician).