E Soskis

I have insurance through a private company and they had one of their nurses call me and offer to help me "manage" my illness. I couldn't resist - my bad....I had to play with her a little bit....I began quizzing her on dysautonomia, AAG, and related issues along with current treatments and pending experimental treatments. She was very quiet for awhile then admitted she didn't know anything about this disease. She quickly decided I could manage my own case when she found out I was a RN for more than 30 years with specialties in emergency, trauma, and teaching. Let's see..that was a couple of years ago.....the insurance company never called back.......hum.....wonder why? I know, I was a bit cruel but, it was amusing!

Medical jargon is very confusing to the non-medical person. Unfortunately, physicians forget to use common terminology when explaining things and it can get frustrating. Don't ever hesitate to tell your physician you don't understand his/her explanation and you need it in a more easily interpreted form. Of course, there are those physicians who purposefully use fancy medical terminology to cover up the fact they know very little about the subject at hand. There are also those that want to "impress" you with their advanced education and actually "talk down" to you. Whatever you encounter, you need to be your own advocate and speak up if you don't understand what is being said.

Some of your symptoms sound exactly like what I have been through. I have autoimmune dysautonomia (AAG) - in other words, my body makes antibodies against itself - unfortunately, they are attacking my own nervous system. I have sudden heart rate drops and required a pacemaker when my heart rate finally settled on beating 20-40 times a minute (way too slow). I receive plasmaphoresis about every 3 weeks - this is similar to dialysis. My blood goes into a machine that separates the red cells from the plasma. The plasma is then discarded and replaced with a substitute - in my case, it is albumin. The theory behind this type of treatment is simple: remove all the bad antibodies that hang-out in the plasma and prevent them from attacking my nervous system. The body generates new antibodies about every 2-3 weeks so, this is why I am on an every 3 week cycle of treatments. I have been doing this for about 2 years and am still able to work - just moved to a desk job instead of on my feet all day. There are blood tests that isolate the types of antibodies you have in your bloodstream - these blood tests will indicate whether or not you have an abnormal immune response that is causing the dysautonomia. I encourage you to explore this option. I read a lot of posts and often wonder if some of our members actually have an autoimmune dysfunction instead of other syndromes.

Yep - first explanation is correct - raising arms causes the heart to pump harder and faster to keep circulation going - and circulation is now having to travel uphill - the normal response would be a slight elevation in heart rate with other body systems kicking in to compensate. It seems, from what I am reading, with POTS, it can cause an abnormally high heart rate but, not necessarily a more effective "pump" response from the heart. My response to raised arms is the exact opposite. My heart rate suddenly drops and if I don't lower my arms, I could pass out. My physician cautioned me to never raise my arms above my head, don't bend over or lower my head, and be sure I never stand up too long. Kind of limits my activity!

I was on IV immune globulin for over a year - it has a lot of side effects and is very expensive but, it reversed my symptoms and kept me alive. It quit working after about a year and I have since moved to plasma exchanges. If you have an autoimmune-related diagnosis, immune globulin is standard first line treatment. It works terriffic in some people and not so much in others. The only way to know if it will work is to try it.

Side effecfts vary - some severe and some not so severe. I've seen some kids sail right through it without barely a problem. I had horriffic side effects including aseptic meningitis, allergic reactions, and profound hypotension.- but, I was almost dead when I was started on it. I was given only a few months to live and immune globulin was a "last ditch" effort that thankfully, worked!

Understanding that "how are you" is a standard form of greeting and people don't particularly care how I am really doing....I just say "I'm fine" or "doin' good" - the expected response is "you look good". So....my true epitath should be, "she looked good"!

Yep - not sure it's the water itself making you sick...probably the overall volume dumped into you stomach at one time. There are a lot of nerves connected to the stomach and GI system so, when loaded down, feel sick, nauseated, light-headed - also, a full stomach diverts blood circulation to the stomach to aid in digestion - diverting blood away from brain and other areas also contributes to sick feeling - I keep a bottle of water at my side and take a swig frequently but, I never sit down and gulp down fluid because...well, I like to stay conscious as much as possible! I still manage to take in 80-100 ounces per day of fluid. I never rely on my thirst mechanism - it almost never works correctly.

It kind of sounds like you have some type of peripheral neuropathy - I have Raynaud's and many of your same symptoms - my EMG was normal as well. The autonomic nervous system is divided into 2 parts: sympathetic and parasympathetic. When the parasympathetic system malfunctions, the nerves in the arms and legs don't work right - it is not uncommon to have sensory changes when the peripheral nerves are messing up.

There are times that my left foot is completely numb and I can't feel it when I walk. I also have pins and needles feelings in my feet and hands off and on. My legs can turn purple'ish in color at random times. My fingers feel "dead" at times and blanche out white - especially in the winter when it is cold outside. These are all symptoms of Raynaud's which is mostly autoimmune in origin. Has your physician ruled-out MS?

I generally take 10mg in the morning upon waking up (sometimes 20mg if I am really struggling). I take a second dose of 10mg about lunchtime. If I'm having a bad day, the second dose may be midmorning with a third dose of 10mg early afternoon. You will have to learn what a good dose for you is - some people need more, some less. Before I started plasma exchanges, my dosages were frequently up to 70 mg a day which really pushing the upper limits. It seems prudent to start low and go from there - just don't take it close to bedtime

I have been near death several times - I once woke up in the ER with the full crash team standing over me and the defibrillator at my side - the doctor yelling at me "why is your heart doing weird things"....what did I say? "because it wants to!" - ... After my last near death experience, I am at complete peace - it was a harrowing ride to the hospital with me barely conscious in the back seat, heart rate dropping 20's and below - I finally let it all go and handed myself over to God. At that moment, I felt a radiant light surround me, wrap me tight and soothe my trembling soul. It felt like my head was lifted and placed in a great big "lap" - I felt my hair being stroked and "heard" soothing words of comfort. From that experience on, I know whatever the future holds for me, it is OK - all of this is bigger than I am and my God is in control. Naomi, I am so sorry you are feeling terrible - we have a terrible disease- we feel terrible most of the time yet, I am grateful for the little taste I had of what is beyond the veil - I truly know that there are more around us who are for us than the ones against us!

I never had much success with salt tablets - I just try to eat a lot of salt on my food and choose salty-type foods to eat.....this becomes problematic when I am admitted to the cardiac floor of the hospital - all they want to serve is "heart healthy" food...aka..no salt....just try and explain to the staff why you need a lot of salt - it's pretty comical!

Very interesting to read all the posts - I realize I am truly not alone with all the neuro "stuff" - I often have dizzy spells - vertigo - feel like I'm being pulled downward or feel like I'm the little ball in a pinball machine! - bumping into furniture, walls, people.....I also have tinnitis - constantly....feel like I'm deep in the woods listening to the buzzing of the crickets or inside an old television listening to the "snow". My co-workers are used to my cognitive dysfunction and even laugh with me when I can't quite come up with the right words or sentences....very annoying when I have to teach and I can't remember simple concepts I've been teaching for years....and yes, Soulshine...the earth is definitely on a permanent tilt!

I'm sorry no one will listen to you. I also began dysautonomia symptoms in my early 20's....it was so frustrating to be treated like I was a "crazy" person - It seems that the medical professionals are dismissive when they don't understand something - it's easier to put you off than to take time to figure things out - lack of affordable healthcare is also a big issue -

I have urinary dysfunction from my dysautonomia and I do not have POTS - mine is autoimmune in origin. I have had urinary retention for many years and have fought off urinary infections due to retaining urine. The sensation to urinate has greatly diminished and I often do not even know I have a bladder that is about to pop - sounds like you really should have a work-up by a urologist to test your urinary dynamics and scope/scan your bladder. If you indeed have Lupus, this could be a serious issue as this disease can invade kidneys and bladder and do permanent damage without appropriate treatment.

I don't know how to get you the affordable insurance/healthcare you need - maybe others have suggestions? You are young enough to remain on your parents insurance plan - perhaps that is an option? - I carried my son until recently (he is 24) - he now has a job with his own health insurance......

Wow - how curious! I'm not a neurology expert but, it sounds like he needs a lot more work-up - this does not seem to be a typical presentation of POTS - dysautonomia can cause a plethora of symptoms however, these type of tremors are suggestive of other neurological issues - it might be that the POTS is really a symptom of another disease process that is going on -

Be persistant - keep digging - it may take many referrals and time to track it all down and put the pieces of the puzzle together - sending blessings, grace, and mercy your way....

There are several reasons why elevating the head may help. Most everyone with dysautonomia experiences "orthostatic hypotension" - our blood pressure drops when we stand up (especially suddenly stand) - A fair number of us with this orthostatic hypotension also have "supine hypertension" - our blood pressure goes way up when we lie flat. Having both conditions makes treatment for the dysautonomia kind of touchy - drugs for raising BP (midodrine) can cause extreme hypertension when we lie down flat. So, by gentle elevation of the head of the bed at night, we can avoid this nocturnal high blood pressure yet, still receive enough circulation to our brains, lungs, and heart.

Another reason to elevate the head of bed at night has to do with certain hormonal systems that kick in during sleep. A flat position at night can alter the type of hormonal production we need. A 30-degree elevation of the head can help key the body into the right kind of hormonal production and prevent "nocturnal diuresis" - blood pooling in places we don't want it to pool at night.

Yet, another reason to elevate the head of bed has to do with our natural circulation and how well our organs are perfused. A recliner-type position at night facilitates the best circulation - especially for critical blood flow to brain, heart, and lungs.

Having now expounded upon the virtues of gentle elevation of the head - if it does not work for you, then it does not work! Not everyone with dysautonomia (regardless of the type) responds favorably to this. I have an auto-immune based dysautonomia and it is a necessity for me - I cannot lie flat - even when I have very little blood pressure -

It sure would be nice if our medical "professionals" would thoroughly explain why they advise certain treatments. I have spent hours researching different recommendations and have been quite amused at some of my findings!

Knowledge is powerful!

not sure why MD's don't warn people about lying down after taking midodrine - perhaps they don't even know???? anyway....I've been on midodrine for years - it is very potent but, short-acting. It causes the blood vessels in the arms and legs to constrict (get smaller) in order to increase the blood volume available to major internal organs (heart, lungs, brain, etc) With the blood vessels in the arms and legs now constricted, the central blood pressure increases. So, instead of the sinking feeling with low blood pressure, you begin to feel better because your BP increases.

The reason we can't lie down after taking midodrine is because by lying down, blood begins to flow more freely to the internal organs thereby causing a further increase in blood pressure. Once a dose is taken, it begins to act quickly (usually within a few minutes) and only lasts a couple of hours at most. If you truly have low blood pressure that tends to stay low, midodrine is a wonder drug. The preferred position with autonomic failure is a semi-recumbant position - 30degree elevation of head, pillows under arms and legs (a recliner type position) This allows for maximum blood flow to internal organs without "rebound" hypertension or the low blood pressure from sitting up with feet on floor. I know some physicians even have recliners in their office for autonomic failure patients.

The high blood pressure resulting from lying down after midodrine also is why physicians should warn patients about not taking it close to bed-time. I had instructions not to take it after 4-5pm in the afternoon but, I go to bed pretty early. My concern for you is that you have "sudden" drops - are you sure you don't have a sudden heart rate drop then your BP falls because of that? This would be suggestive of another type of disorder - I have AAG and that is what happens to me.

Good luck - hope it helps you feel better. You can start out with a very low dose at first and see how it does - it is much easier to gradually increase doses than to get hit with a bang and have to back down......that can discourage you from continuing the medication.....

I really depend upon it. My blood pressure is so low that I could not function without midodrine.

LindaJoy...how timely! I wondered if I were the only one in the world that was having "hot flashes" when I turned over in bed! This just started recently and it happens even when I shift positions in my recliner. Any suggestions? - it's just getting worse and worse!

There are 3 organs that the body will protect in anyway it can - the body will shunt blood from all other areas just to perfuse the brain, the lungs, and the heart - it will even shut down the kidneys to allow for perfusion to these three vital organs. In a normal functioning autonomic nervous system, the brain autoregulates compensatory systems: especially blood pressure and heart rate. The sympathetic nervous system regulates itself primarily through heart rate. Those of us with dysautonomia have malfunctioning sympathetic nervous systems. So, if the body usually compensates for changes in physiologic status by the elevation of heart rate or the lowering of heart rate, then this system does not work properly with dysautonomia. I have AAG and my sympathetic system cannot elevate the heart rate. When my rate should go up, instead, it goes down. With POTS, the "brakes" for the heart rate are malfunctioning and therefore, the rate can keep climbing and get way out of control. The consequence of all these malfunctions is that the brain, heart, and lungs don't get the proper blood flow they are supposed to receive. Since blood carries oxygen and nutrients to the tissues, inadequate blood flow means inadequate oxygen and tissue perfusion....another word is "shock". When the brain experiences "shock", it cannot function correctly so...we have that "fuzzy headed" feeling, difficulty concentrating, cognitive impairments, and feelings of passing out - if not actually passing out!

I have a pacemaker to keep my heart rate up in order to adequately perfuse my brain. I have a friend with POTS-like dysautonomia that has a pacemaker to do the exact opposite - it speeds up when her heart rate is too fast and overdrives her rate by backing it down to a normal rate and level. I totally sympathize with everyone who has blood pressure and heart rate issues due to dysautonomia. This is a frustrating disease that takes day-to-day management.

Forgive me for being long-winded. I am often asked to teach on this subject and really want to increase the knowledge and awareness of dysautonomia: types, causes, and consequences. I guess I am carrying a torch to help my fellow medical community better understand dysautonomia so that people who come behind me receive the best possible care that can be given instead of that blank stare and gloss-over by "professionals".

I am a RN of 30+ years and a sufferer of AAG (autoimmune autonomic ganglionopathy)- I am blessed to have physicians who want to work with me to figure it all out and find treatments that will help alleve suffering and improve quality of life. Now, if I can educate other hospital staff about dysautonomia as well as other patients - perhaps those of us with dysautonomia can become not only better at our own medical management, but become advocates and activists for all!

(it only took me an hour to get this down - my brain is very foggy!)

Dysautonomia certainly messes with the GI system. In the past couple of months, I have had increasing difficulty with abdominal swelling and gastroparesis-type symptoms. GI motility is slower and I have a lot of gas and cramping. A couple of weeks ago, it was so bad that I quit eating. I began a liquid diet to allow my stomach and intestines to "rest". After a couple of days, I began to feel better - hungry - but better. I began to add back light foods and now am able to eat almost anything as long as it is only a small amount at a time. I think you just have to experiment and see what works for you - some people respond to a gluten-free diet. I find that foods that are high in sugars and fats increase my symptoms. There are medications that help with bloating, swelling, and gastroparesis - some medications are used off-label and your physician should know which ones may help. Good luck - I feel for you as this is a frustrating part of dysautonomia.

It is so hard for people to wrap their head around "dysautonomia" - I get so many blank stares when I try to explain what it is - What is even worse is when family members don't really try to "get it" - It is truly sad when you have to pass out in front of your family before they take you seriously.

I'm sensitive to fluorescent lighting as well. I may need to have tinted lenses made so I can keep working in the office without so many headaches. I have seen certain lighting and flashing of lights trigger seizures in sensitive individuals. It stands to reason that with dysautonomia, our nervous system has gone haywire so we may be more sensitive to anything that stimulates the nervous system (lights, sounds, etc...) A sudden loud noise at a certain frequency will send me screaming into the hall - some weird kind of response I suppose. I have a relative that uses a back massager to ease her back pain and I have to leave the room when she turns it on. The rhythmic hum hits me wrong and I feel like I'm going to pass out or vomit so....I leave the room.

Wow! How timely you ask this question! My left foot is starting to become numb and tingling pretty much most of the time - my neurologist says it is the Raynaud's kicking in but, it is quite disturbing and annoying. Sometimes, I feel like there are bugs crawling all over my legs or arms but, when I go to "brush them off" - there's nothing there! I have also felt like someone poured a bucket of water down my legs- I could actually feel the water as it flowed down my legs only....there was no water - I don't even sweat so, ....strange things are happening! My left side of face is always tingling - I keep swiping at it but, it doesn't go away.

One time, when I attempted to get out of my car - my legs "gave way" and I ended up face down in the parking lot - no damage except to my psyche. Sometimes, my legs feel so heavy - almost "disconnected" from the rest of me that it is difficult to put one foot in front of the other. Dysautonomia has some strange symptoms and I appreciate it when people share what is going on with them - it helps me understand I am not alone in this battle - there are other warriors in the battle as well!

I found that when I take vaccines of any type, I have a hyper-response. I wouldn't call it an "allergy" but, I get achy, low grade fever, and just feel run down and exceptionally tired. I think it is because of the immune response from my body - it goes into "hyper drive" while it is producing new antibodies. I would imagine that since I have an autoimmune dysautonomia, I am more sensitive to the response from the vaccine. May be the same for some of you.

I do feel vaccines are important and if they can be tolerated, we should take them. If you have ever had the flu that turned into raging pneumonia, you would understand where I am coming from. Dysautonomia is miserable enough without adding a serious illness to the mixture. Most vaccines don't claim to "prevent" but, to perhaps lessen the symptoms if you develop the condition. I'm not the expert but, I work in a health-care environment and understand that if the entire staff comes down with the "flu" and is out, then who is left to care for the patients? - This is especially important should there be a pandemic of a particular disease. I have also seen children afflicted with diseases that are readily preventable or manageable had they only received vaccines - instead, they suffered permanent damage from lack of immunization. Very sad indeed.....

It might not be the midodrine. I have a wide fluctuation in weight with dysautonomia - I lost over 40 lbs in a few months a few years ago and we never figured out exactly why - now have a range of 10-15 lbs up or down and this has been steady for the past couple of years.

I don't have POTS but, do have an autoimmune dysautonomia. I am blessed to work in a place where my co-workers are understanding and helpful. They often recognize when I am in crisis before I even realize it myself and are quick to react. I have gone from very physical work to office work with some teaching and training. Most days, I sit in my little corner of the office working quietly on the computer with few physical demands placed upon me. Driving can be a challenge - mainly when I am having flares or right after plasma exchanges. I don't live far from the hospital so, I can be home in a matter of a few minutes and have only had to be driven home a couple of times when my blood pressure was extremely low. Exercise is not an option for me - all of my physicians tell me not to worry about it and do only what I feel like doing.