E Soskis

Welcome to the forum - sorry you have had all these bad experiences but, glad you have hope of proper diagnosis and treatment - I think you have experienced what most of us have....years of symptoms that seem to be unrelated - lots of different work ups and MD opinions (or lack of opinion) and now, on the right track to a proper diagnosis. Dysautonomia covers such a wide variety of disorders yet, is still a relatively "rare" condition with which most healthcare professionals are unfamiliar. I hope you find the answers you need in order to obtain the correct treatments and medications. Don't give up hope - the answers are out there - keep digging and asking - there are always those who are negative and lob lots of negative thoughts and prognoses your way - don't give into them - I was "predicted" to die 6 years ago - I'm still quite alive, working full-time, and caring for an elderly parent. - I wish you good luck and lots of support!

I started having tinnitis off and on about a year ago - now, it is steady and unrelenting - if I am flaring, it is very loud and sounds like a plague of locusts swirling all around me - when I am holding my own, it is just like "white noise" in the background - I can usually drown it out by turning on the TV, radio, or something like that - just figured it was all part of the progression of the dysautonomia......

Last year, my elderly mother came down with Influenza A and B - I took care of her and the doctor gave me a prescription of Tamiflu. I had no side effects and I did not come down with the flu - quite unusual...mom ended up in the hospital and I didn't!

Sorry you are having all these troubles - also sorry the hospital could not help you. I don't usually have sudden rapid heart rates but, I do drop my heart rate thousands of times a day - so, I have a pacemaker - sometimes, before the pacemaker kicks in, I can feel pretty bad - even lying down in bed at night - I can feel like I'm going to pass out in my sleep - sounds weird huh? - I also have lots of leg jerking, arm jerking, even some type of involuntary muscle jerking beginning in my abdomen - especially at night - it wakes me up but, it usually only happens as one big jerk then it is over - don't know if it has anything to do with dysautonomia - I do know that if I have been lifting something kind of heavy and holding on for more than a few minutes, after I set it down, my left hand will tremor uncontrollably for up to 30 minutes - I'm sure that is related to the dysautonomia.

I'm real sorry your parents don't understand the kind of stress you are under - I found that if I honestly shared my feelings with my family when I'm feeling bad, they seemed to "get it" a little better. It is very hard for a healthy person to understand how someone feels when they are chronically ill and fatigued - you just have to be patient and keep explaining - maybe one day they will finally understand you are doing the best you can given the circumstances.....

Joint pain can be associated with autoimmune disorders. I've had joint pain since my late teenage years - I do have an autoimmune dysautonomia and the pain has progressed over the years - my hands are thin and boney and my finger joints are beginning to swell and twist - my wrists hurt so bad at times that I cannot move my hands properly - I play the piano and that actually helps to "exercise" my fingers and wrists - I used to have an anatomy and physiology teacher who said "if you don't use it, you lose it!" - I think she was very wise.

One of the very first symptoms of the dysautonomia I ever experienced was a numbness and tingling sensation in the left side of my face - at first, it was a little annoying and caused me to "brush" away the "bugs" on my face. It became much more annoying over many weeks - I thought it was Bells Palsy but, no facial droop. My doctor at that time could not figure it out - seemed to involve certain cranial nerves due to the pattern of tingling and numbness. Now, 20 years later, I recognize it as part of the dysautonomia. I have Raynaud's associated with the dysautonomia and the facial tingling/numbness is back and almost never goes away now. I guess it is something I have to live with. I would definitely have your MD rule out any other pathology but, there is a real possibility it is part of the autonomic dysfunction.

You are crying out for help - I hear you - I just responded to your other post on propranolol - please get help right this minute - if you have absolutely no one who can come over and assist you, go now to the local ER - tell them exactly what you are feeling and that you are sad and depressed.

You are postpartum and your hormones are all over the place. You have dysautonomia which messes with your head. You are sleep-deprived which is an assault to your psyche. Any one of these three things is enough to push anyone over the edge yet, you have them all at one time. This is a temporary state that can be worked through and handled.

You will get through this - you just need some help right now. We all need help at one time or another. Please go get the help you need - life will look differently when you have help, rest, and proper treatment.

Yep - dysautonomia causes all sorts of visual distortions - I have trouble at times with depth perception - when I am walking along, sometimes it looks like my next step is a long way down - very strange visual field. My eyes get blurred at odd times - kind of like looking through a thick fog - I also have something like ocular migraines where suddenly, I have a ring of flashing lights in one eye that looks like a halo of fire. It is so bright, I cannot see out of that eye at all. This can last for a couple of minutes, or a couple of hours. Never a dull moment!

If you are feeling this bad after taking it, then stop taking it - if you are feeling depressed, get help immediately! You have a newborn which means you are at high risk for post partum depression - I went through it also and was absolutely miserable until I got the help I needed. When you are extremely tired, (as in taking care of a newborn), and when you are sick on top of that - your ability to function at a basic level gets tossed right out the window. You need some help. Do you have a friend or a neighbor who can help you with the baby while you get rest? - Is there a phone hotline you can call to talk and get advice? - Do you have a pastor or other clergy who can counsel you and arrange for other church members to assist? I must urge you to seek immediate help - any other family who can assist? Don't try to go this alone - I suspect most of the trouble is needing some relief and rest - once you get that, you will physically feel better which will improve your mental state. I say again, if you are severely depressed....go immediately to an ER and seek help. I was very depressed after having a child - there is no shame in seeking help - it saved my life and I am forever grateful - so are my kids!

I will not name the two "top" facilities to which I was referred. I had absolutely horrible experiences at both places. There are so many people with so many problems that they see every day, they treat us like cows in a cattle mill. You are just another number to them and they really don't care diddly squat whether or not they solve your problem. I have found my answers right here at home - I have local physicians who care and dig deep to find solutions. I will never again drive miles and miles to a facility that supposedly is "the best".

I take propranolol 40 mg every 4 hours - around the clock - I get up at 1am just to take the middle of the night dose - I can't miss a dose or I get sick. The side effects I experience are....fatigue, occasional heart burn, and occasional dizziness - these are all minor compared to what happens when I don't take it or miss doses. I have a very irregular heart beat and without the propranolol to block the irregular beats, my heart goes kind of whacky. My cardiologist would not let me take this much until I had a pacemaker placed. My own intrinsic heart rate has slowed to 20-40 beats per minute and without the pacemaker, the risk of it slowing down more was too much to take high-dose propranolol. As it turns out, in some cases of dysautonomia, propranolol actually does not slow down the heart rate - it strengthens the heart so that it beats more effectively and helps keep down the irregular ventricular heart beats.

As a physiological being, we are more than the compilation of a series of numbers. Our physiological status is always in flux and though the "numbers" seem normal, the reality is we still have floppy blood vessels, dehydration, and poorly compliant cardiovascular systems - particularly with dysautonomia. I am a big advocate of treating the patient and the symptoms, not so much just the "numbers"......

For what it's worth.....when BP drops suddenly, as in "fainting" - the brain is deprived of enough blood flow to maintain consciousness - the brain is also deprived briefly of oxygen. The lack of oxygen to the brain causes seizure-like activity. It only lasts for a few moments then quickly passes. This also occurs when a patient experiences a lethal heart rhythm (ventricular fibrillation or ventricular tachycardia) - these abrupt cessations of blood flow to the brain look very much like someone has a seizure disorder but, in reality, that is not the case. Of course, your physician should advise you about possible seizures - I'm just relating what I have seen after 30+ years working as an ER nurse........

I have the cardiac symptoms because the nerve endings to my heart are steadily being "fried" by my autoimmune disease. Unfortunately, with AAG, the nerve endings are destroyed by the antibodies that attach to them and render them unable to transmit impulses. Since my cardiovascular system has been hit hard with the disease, I have continuted to experience weird heart beats and rhythms that are steadily worsening and progressing. My cardiologist says there is little he can do about it. I take propranolol to help suppress the ventricular arrhythmias. I was sitting in my recliner a few days ago and felt a new dysrhythmia - atrial fibrillation. I could tell it was A-Fib by the rapid, irregular rhythm. I also felt light-headed and my chest felt tight. I knew I would end up in the ER then on the cardiac floor if I went into the hospital so, I waited it out and it straightened out after about 15-20 minutes. I don't think it is smart to sit around with new onset atrial fibrillation since many strokes are the direct result of blood clots that form in the heart then break off and go to the brain due to the atrial fibrillation. I suppose I'll have to talk to my doctor about this "new" problem but, I am weary of new problems and trying to figure out what to do about them!

I've taken the flu shot every year for the past 10 years or so - other than a sore arm for a couple of days, I've never had a problem. The one year I did not take the flu shot, I came down with the flu so bad that I was out of work for about a month and ended up with raging pneumonia. I know that the flu shot does not guarantee I won't get the flu but, it can sure lessen the severity of it if I do come down with it. I will continue to take it every year.

I did take the pneumonia shot this year - did not have a problem. I also took the shingles vaccine right before Christmas and I came down with the rarest of reactions: "flu like syndrome" - I did not actually have the flu, just the syndrome associated with a shingles vaccine reaction. My doctor said it is quite rare and less than 1% of the people who take the shingles vaccine ever have this problem. I did end up in the hospital and was sick as a dog for about 2 weeks - I'll absolutely never take the shingles vaccine again.......

I don't live in a particularly small town - population 200,000+ - but, there is currently no home health agency or any other health agency that will supply home IV fluids. About a year ago, there was one private agency that ordered cases of IV fluids for me (with a prescription) and I was able to hang my own IV's at home or at work. Now that agency folded and there is no other one able or willing to do this. In fact, most insurances in this area will not even pay for home health from the hospitals to hang home IV's, antibiotics, etc... I think it is so ridiculous to be required to check into the ER just to get a liter or two of IV fluid. It seems like the additional costs associated with an ER visit would encourage insurances to pay for home IV fluids and supplies - it would be so much cheaper.

At times, I feel like I'm about to pass out in the middle of the night when I am lying down in bed! - despite the correct anatomic positioning of head 30--degree elevation, arms elevated on pillows and pillow under my knees/lower legs, I can still feel pre-syncopal. I asked one of my MD's about it and he said that it is related to vascular collapse and poor circulation to the brain. When the blood vessels don't respond like they are supposed to (floppy and dilated), the vessels pool blood in them and it does not circulate like it should. This leads to poor circulation to the 3 major organ systems that keep us alert and functioning: brain, lungs, and heart. So, even in the middle of the night while lying down, if the blood vessels are floppy and poorly responsive, then there will be blood pressure drops which lead to the symptoms you are describing. Remember, late afternoon and beyond, we don't take our midodrine or florinef and we don't wear our compression garments to bed so, we can have these symptoms even when lying down.

I think dysautonomia, whatever the origin, does weird things to weight. I have not been eating any more or any less than usual and have gained 12 pounds in the past couple of months. My weight fluctuates from week to week by 5-6 pounds but, this weight gain has been consistent. Last year, I lost about 20 pounds - no apparent reason. I have a range of clothing from small sizes to x-tra large - I asked my physician about the weight fluctuations and he has no explanation nor is he very concerned so, I just live with it.

Klonopin is a great drug for dysautonomia - not only is it a mood stabilizer but, it helps with sleep - it also helps to suppress certain hormonal surges that occur during the night hours. Another great drug that helps to suppress the cortisol surge at about 3-4am is phenobarbital - very low dose at bedtime can work with the Klonopin to help maintain sleep. Some people seem to develop a tolerance to the Klonopin and require dose adjustment or even a medication change after a few years - my neurologist has a Klonopin withdrawl program that gradually tapers down the dosages then he switches to another type medication. He has encouraged me to do this because I've been on Klonopin for many, many years but, I figure if it isn't broken, why fix it! I have to take benadryl when I have the plasma exchanges due to a sensitivity to some of the albumin replacement therapy. It takes me over 24 hours to recover from the benadryl and the spacey side-effects.

Instead of high heart rates, I have low rates with multiple rate drops per day - when my resting heart rate dropped and settled on 20-40, I had a pacemaker put in and now, my rate will only drop for a few seconds before the pacemaker kicks in and keeps me at a steady 72. I know that before I had the pacemaker, I was fatigued, washed out, and not able to stand up for long without becoming syncopal or pre-syncopal. I don't know what natural beta blocker you are taking but perhaps, it is contributing to your symptoms? It seems to me that if you used to have high heart rates and now you are having low heart rates, you need to see your physician or cardiologist and let them re-evaluate you. If you feel like death-on-a-cracker, you should at least try to figure out why and maybe even discover something that will perk you up! - Good luck - sorry you are having so many difficulties......

I have found that my whole life has been changed by the dysautonomia. In fact, it seems to change some every day. I once had many plans, hopes, and dreams that have all been tossed by the wayside now. I used to enjoy many social groups and activities. I always enjoyed music and performing vocally and instrumentally. All of that is either completely gone or has greatly been modified due to the limitations of progressive dysautonomia. I have to say, however, that I have grown spiritually from this experience. I have learned to sort out what is truly important in life and what is just material and superficial. Life is much "richer" and "fuller" now that I have shed all the superficial trappings of this earthly world. I am blessed with the "peace that passes all understanding". So, please don't dwell so much on what you used to have or what you think you are missing - you have a wealth of treasure deep inside and it is just waiting for you to tap into it and receive the blessings that are held just for you and you alone!

Well said Spinner! I think my real epitath should read: "But, she looked so good!"

IV fluids are useful for quick relief when you are flaring - alone, they are only a temporary quick fix. The fluids fill up your blood vessels so they are not so floppy and collapsable. The fluids are quickly filtered by the kidneys and excreted within a few hours. Are you taking any other medications that encourage fluid retention? - I drink at least 80-100 ounces of fluids every day and I use at least 6 grams of salt every day. Some people use Flourinef - it caused me to swell too much.

When I saw Dr Randy Thompson in Pensacola, FL, he indicated that he has patients he sends to an IV clinic 3 times a week for IV fluids just to boost their volume and help them feel better. If you choose to go that route, you may find that a central IV port (infusaport) will help with vascular access. This port cannot take IV fluids at an extremely rapid rate - the fastest mine will infuse a liter of fluid is over 4 hours - however, the trade-off is worth it because your veins in arms/hands become darn nearly inaccessable after a few sticks. I've had my port for almost 3 years and I wouldn't trade it for the moon!

Sounds like dysautonomia flare - when flaring, I can get ataxic and have trouble judging distances. I also have difficulty with spatial orientation - sometimes, the room seems to turn sideways then abruptly turn back upright - very strange and disturbing feeling.........

My mouth gets so dry that I have a hard time even conversing - I keep a bottle of water with me at all times and I have sugar-free life savers on my office desk and in my purse. I also use the "dry mouth" mouthwash regularly. A dry mouth sends a signal to the brain that says "I'm thirsty" - very annoying.....