E Soskis

Yes - +antibody indicates a neurological autoimmune disease (I have AAG) - or, it can point to a carcinoma - primarily lung cancer.....I'm not an expert in this field - I have read a bit since being diagnosed with AAG - I really don't understand how all the different antibodies work to point toward or against certain diseases - and frankly, I think most physicians don't understand it very well either!

Yes - both shocks result in low blood pressure - I don't know the specifics of your son and his medical case but, for me, autonomic dysfunction waxes and wanes - it should get better with the "usual" treatment and fairly quickly. Sepsis steadily worsens and does not get better on its own. I have had sepsis and the feeling is not at all like dysautonomia and autonomic dysfunction. I went down quick and kept going down fast - I recognized the need for immediate medical intervention and was admitted on IV antibiotics. When I "flare" with dysautonomia, I have weak periods and periods of low blood pressure but, it usually responds within a few hours to fluids, midodrine, and rest. Sometimes, it lasts a few days but, I never feel in danger like I did with sepsis. My physician and I have an agreement: if I am down more than a day with low blood pressure or I need more than a liter of IV fluids, then I must be admitted. You might check with your son's physician and see at what point he/she would want you to bring him in and not try to "hang in there".

Not good to lie flat with dysautonomia - blood pools in the mesenteric (abdominal) blood vessels and pushes up on the chest when lying flat - this makes it hard to breathe and actually decreases the circulation to heart and brain. The best is head elevated about 30-degrees which promotes better circulation and helps breathing. I've heard a lot of people complain about lying on their left side and heart issues. I suspect it is because of the compression of the vessels around the heart when lying on the left side.

The only way I can sleep is with my head elevated. I also have pillows under my arms and legs. Dysautonomia is not conducive to a restful night of sleep.

Sometimes after taking midodrine, I get a "whoosh" in my ears - it is my blood pressure rapidly elevating and I can actually "hear" the blood pulsing through the blood vessels near my ears. It goes away when my blood pressure is low (which is most of the time). I have a constant ringing in my ears from the dysautonomia.

I have peripheral neuropathy and have all kinds of strange sensations in my feet and hands. Most of the time they are tingling, numb, or throbbing. Sometimes they turn bright red or dark purple. My legs also feel heavy at times. I wouldn't be surprised at nearly any unusual sensation at this point!

I have AAG

I started with IVIG and it worked well for almost 3 years then, not so much. I switched to plasma exchange (pheresis) and have been doing that for 3 years now. I'm up to once every 4-5 weeks and I manage pretty well.

I encourage you to get tested for AAG - I am told by my physicians that it is very rare but, I suspect it is not as rare as they think - people just need to be tested more. If that happened, I bet there would be a lot more research and development of AAG-specific treatments.

What you describe sounds like septic shock - shock from infection: a form of distributive shock.. He is at great risk due to trach and vent. Autonomic dysfunction or dysautonomia can also produce a type of distributive shock. The causes are different. Sepsis is from infection that has spread to the entire body - via the blood stream. Autonomic failure/dysfunction causes the symptoms of distributive shock because of floppy blood vessels and poor vascular compliance - blood pools in large blood vessels and does not adequately provide enough circulation to the brain and other vital organs.

When you son presents to the ER with the type of symptoms you describe, they must treat for sepsis as it is the most likely culprit and has a high rate of fatality if untreated. Sometimes it spreads so quickly, there is no time to treat before all organs shut down and death ensues. A good discussion to have with your son's primary physician would be how likely he is to experience shock from dysautonomia vs shock from infection -

Beta blockers don't really lower BP in patients with autonomic failure - it actually has a paradoxical effect - it will help strengthen the heart beat which helps keep his BP up. It also helps keep the heart rate at a more normal level in autonomic failure -

You have quite a challenge to care for your son day in and day out. I wish you all the best and encourage you to study and learn as much as you can about dysautonomia. Blessings to you and your son.

I thought it was an "age" thing....when I've been sitting awhile, I am very stiff upon standing - I also have problems at times getting my legs to work right - they seem heavy and draggy - it is a real conscious effort to "put one foot in front of the other" -

I've been wondering about medic alert bracelets vs necklaces - I'm curious about the bracelets that can be used in computers - does anyone have experience with these? - most EMS agencies utilize some type of computer run reporting system and most hospitals are computerized now so, theoretically, these would be good. The emergency personnel could plug the bracelet directly into the computer and an information screen would be visible with detailed medical information. I just wonder how durable they are. The cost is reasonable....if it really works! Anyone with experience?

When I first began to get sick with dysautonomia, I ran low-grade fevers - between 100-101 degrees F - all day, every day - That was many years ago. I still occasionally run a low grade fever with generalized body aches and fatigue. The difference now is that I do know the fever that is associated with dysautonomia versus other more serious causes. Sometimes the low-grade fever is the onset of a flare and if I hit my medicines hard, I can keep it at bay. My dysautonomia is autoimmune in origin and it is quite common to run fevers with autoimmune disorders.

All I can speak from is my experience with the Shingles vaccine. I have AAG dysautonomia and my physician recommended I take the vaccine. So, I took the vaccine and within a few hours knew something was terribly wrong. I began having flu-like symptoms that worsened by the minute. By the afternoon, I was home in bed with terrible body aches. When the fever hit over 102 degrees, I was hospitalized with an "adverse" reaction to the vaccine. I have always been able to take vaccines without any issues - except this one. Turns out, unlike most vaccines, it is an attenuated live virus - a small dose of the actual virus. Most vaccines are killed viruses and not live. After a few days in the hospital and out of work for 2 weeks, I recovered. I will never take the vaccine again - it is good only for about 5 years or so. I also now look at any vaccine I'm asked to take to see what type it is. If I am ever offered a dose of a live virus, I will decline. I would certainly talk this over very seriously with your physician before blindly taking the shot - if you have any autoimmune compromise or difficulties, be aware you may have an adverse reaction and become terribly ill.

Probably sitting in one position too long - I was just trying to sort through boxes of family recipes and I found myself about to pass out after 20 minutes or so - just from sitting up at a table in one position - I work at a computer and keep a foot rest under my desk so I can prop up my legs and feet - just so I won't pass out - sometimes, I still get dizzy and begin to act goofy - my co-workers know the drill and lean me back or shove a midodrine in my mouth....

The noise thing....when the autonomic nervous system is not working right, loud noises can cause all sorts of problems - a sudden loud noise can send my skin crawling and my heart rate will jump up rapidly for a moment then bottom out to nothing - (my pacemaker keeps me alive) - I can say that there is never a dull day with autonomic failure.....

I don't think anyone really understands unless they have the disease - most autoimmune type diseases are poorly understood and also poorly researched. The tendency of medical "professionals" is to label a person "quirky" or "crazy" when they present with a batch of symptoms that does not fit in a traditional disease model. So, if a medical professional blows us off as "nuts", then it stands to reason family would do the same thing - I've totally given up on trying to explain this disease to my friends and family - they really don't want to know and they just want me to be "normal" - so, I take care of myself and do the best I can. I am so sorry that we don't have adequate support systems - I see other people with diseases not as bad as mine receiving all sorts of support from family and I think "wow - wonder what that would be like?"

Ditto for me with "Tachyfor50years" - terrible experience - I cannot in good conscience recommend the place.....

I'm so sorry - it's just not fair to have to work, be sick, and deal with a harsh work environment. I've been blessed to be employed for more than 30 years at the same place. I do have intermittent FMLA that I keep up from year-to-year. I save up all my sick and leave time and use it only when I have to be out related to my illness. I have not had a vacation in many, many years - the only time off I get is when I have medical procedures done or am in the hospital because I'm too sick to work. - yet, I can't complain - at least I can pay the bills..........

Yes - blue lips, pasty white face, mouth mucosa bluish/purple, - kind of look like the walking dead....all related to poor vascular compliance - floppy blood vessels - don't get the circulation required to maintain a healthy pink complexion and pink lips. Blood vessels don't constrict and blood pools in large vessels - especially the abdominal vessels - therefore, not enough blood to circulate upward and outward - so, we look like a real-life zombie! - I'd rather not be so "stylish".....

How familiar this all sounds! I ate a piece of toast and a banana this morning and within 30 minutes I was bloated so bad that I looked 9 months pregnant! I went to work feeling like a beached whale - I have listened to my stomach making all sorts of strange noises and growls all day - thankfully, tonight the bloating is not quite as bad. These gastric symptoms are unfortunately not uncommon and we all deal with them usually on a daily basis - good luck and I hope you have a better night!

Freaked: you are not responsible for your parents reaction - how they respond to your illness is entirely on them. Concentrate on what you can control - do whatever you need to do to keep yourself as healthy as possible - and when you are having flares and dealing with horrible symptoms, give yourself some slack. Learn what you can do to help prevent flares and be prepared to receive care when you need assistance to manage the disease. I don't like going into the hospital either - if I had a choice, I'd never go back to the hospital. We don't always have a choice! - so, don't beat yourself up over it all!

Stress can definitely contribute to increase in symptoms and flares. I really believe long-term stress is what tipped the balance for me with this autoimmune disease. If stress releases the "stress hormones" (adrenaline, cortisol, etc...) then, continuous dumping of these hormones into the body eventually takes a toll. I have lived 30+ years in incredible stressful situations related to my job. If I had it all to do over again, I would step back more, learn to relax and "smell the roses" rather than drive myself and my health into the ground.

If you are taking midodrine and you bend over, you increase the pressure in your brain - also, the pressures in your chest change as well. This results in a very full feeling in both your head and chest. You may get a rush of blood to your head and feel like your brain is going to pop right out of the top of your skull. I suspect that if you are prone to migraines, this could set one off. The chest pressure can be intense and also feel like your throat is being squeezed. - all from simply bending over. I was instructed by several physicians to not bend over or work in a bent over position. You bend down using your legs and knees while keeping your torso aligned in upright position - unfortunately, you sometimes have to bend over but, do it quickly! Also unfortunately, this goes with midodrine and dysautonomia........

There is a blood test that will identify whether or not you have a gluten allergy. I tried the gluten-free diet for a summer and my symptoms did not improve - in fact, I was worse. I could not tolerate the gluten-free diet and lost a lot of weight, was nauseated all the time, and had a lot of abdominal pain - my physician instructed me to quit the diet and I almost immediately felt better. There is some research that indicates gluten is the culprit in the majority of autoimmune diseases and I have seen vast improvement in some people with MS who go gluten-free. I just don't think it helps AAG - at least not mine.

There is so much about autoimmune diseases that are still undiscovered - I am sure that over time, autoimmune diseases will be linked to a number of other conditions that we currently know nothing about. With all the chemicals, additives, and preservatives added into our diet and surrounding us in our environment, it is no wonder that autoimmune diseases are so numerous. Now, if we could just catch-up identifying and treating them as well as we create new substances and chemicals, then we might get somewhere.......

I keep asking my physician about shortness-of-breath. He keeps responding that all my tests are normal so, he has no answers about it. I have a necklace graft in my chest now for about 6 months and am developing consequences from that - one of which includes shortness of breath. Yet, I was already short-winded at times before the graft was placed - I just chalk it all up to dysautonomia and "luck of the draw"......

I'm not entirely convinced any one particular food makes the brain fog better or worse - it is more related to food volume consumed. If I eat too much at one time, I guess more blood is pooled in my GI system and my pressure drops which increases the brain fog (not to mention the gastric problems). I always feel better if I only eat a little at a time. I have friends who are quite sensitive to artificial sweeteners and the like but, I have not found this to be my case. I do wear compression stockings (knee-high). I used to wear the compression garments that went all the way up to my waist but, I have a lot of GI problems and the waist part seemed to make it worse. Keeping my blood pressure above 100 systolic seems to help the brain fog but, even with a "higher" blood pressure, I still feel I am out in "la la" land most of the time.

Does your physician have any contacts where you will be in Europe? - perhaps he/she could make the arrangements. Some hotels have in-house medical services and may be able to assist you. Maybe there is a clinic or ER in the city where you will be - your MD could write a brief note of explanation for you with his/her contact information - a kind of "introduction" that may help in requesting a liter or two of fluids. Maybe you could contact the manager of the hotel for information about the area - they may know who to contact or the name of a medical facility which your physician could contact.....I'd try just about anything that you can think of!- maybe short of feigning a heart attack or something!

Brain Fog is most frustrating - I feel like I'm walking around with my mind dis-attached from my body. I lose my train-of-thought easily and drop words constantly. I don't think I have inordinate anxiety - It takes a lot to get me worked-up - my colleagues say I'm very cool under pressure. (probably because my brain is fogged over!) Sorry Art but, don't have any real suggestions for you - I know that when the fog is especially bad, a midodrine will usually improve my brain function fairly dramatically.