E Soskis

So sorry you are having this pain - all types of dysautonomia have the neck and back pain as a common characteristic. There is a certain spot in my neck that I know when it begins to flare, it is the dysautonomia causing the pain. One physician explained it to me like this: the pain in the neck, back, and even chest is caused from lack of proper blood flow to the muscles - without the proper blood flow, the muscles begin to cramp and hurt. He suggested compression garments to help alleviate the symptoms - especially abdominal binder-type. This forces the floppy blood vessels in the abdomen to tighten up and push blood flow back upwards towards the chest, neck, and head. Another way to help thwart the onset of the pain is to sleep with the head and shoulders up on a wedge-pillow - also place pillows at both left and right side to rest arms on at night - this is a more natural position for the body and promotes healthy circulation.....works pretty well for me.

I have an autoimmune dysautonomia (AAG) - not POTS - it still causes dysautonomia but, different in origin - so, many of the treatments for AAG are the same as for POTS

Plasma Exchange = Plasmaphoresis - looks a lot like dialysis - my blood is run through a machine that separates the red cells from the plasma - the plasma is then discarded and replaced with a substitute - the theory is that the "bad" antibodies are in the plasma so, by removing them, we can slow down the disease and the progression of the disease - the red cells are reinfused. I have about a liter or more removed every other week - not perfect but, better than no treatment at all - I do not believe it is a treatment for any type of POTS - I've seen it used in MS patients........

Until I stabilized out on plasma exchanges, I hung my own IV saline - I had a MD order for cases of IV Saline that was filled by a local home health agency - when I became weak and "goofy", I just hung up a liter of saline with a limit of 2 liters before I would have to contact the MD. I used to be an easy IV stick and am fortunate enough to work in healthcare so, finding someone to start my IV was not a problem. The saline really helps expand intravascular volume - since dysautonomia causes the blood to pool in large blood vessels, like the abdomen, the whole vascular tree tends to be floppy and collapse - IV saline helps fill up the floppy vessels and you feel better - at least for a little while. I know of patients that go in to an IV clinic for fluids up to three times a week every week. Thankfully, plasma exchange therapy has eliminated the need for routine IV saline - it is only on a rare occasion that I require a liter or two to "juice me up".

PVC's are not always abnormal - we can all have them - randomly and throughout the day - can be especially bad at night when lying down - your body has it's own intrinsic heart rate that it strives to maintain - when the rate slows down, the body says "hum" - better send an extra beat to pick up the slack - hence, a PVC. Dysautonomia, of course, causes the electrical system of the body to go haywire - including the heart electrical system. These skewed electrical impulses often manifest themselves as a PVC or two or three......There are, of course, other strange heart rhythms but, the PVC's are especially annoying because they feel so "different" in the chest - flip flop, bounce bounce, etc....they can even cause tightness and chest pain - especially if there are a lot of them. As long as your MD is aware of them and monitoring the situation, it shouldn't be dangerous - annoying and occasionally painful though.........

Do you know the origin of the embolisms? - are they coming from your legs or somewhere else? - Pulmonary emboli that come from the back of the lower leg generally are due to the inactivity from being chronically ill. Sometimes from surgery or something like a long airplane flight with inactivity. With dysautonomia, it is the need to stay down and inactive just to maintain decent blood pressure. There is also the issue of clotting disorders as discussed - especially true with autoimmune dysautonomias or genetically acquired dysautonomias. From what I can tell, those of us with dysautonomia, whatever the type, are at increased risk for vascular collapse and heart events as well as pulmonay (lung) events due to this collapse - that would include pulmonary embolism - so sorry you are having these problems - it seems with dysautonomia, there is always something new happening to keep us on our toes.......

I also get short-of-breath and feel like my chest is constricted - just not getting enough air. The way it was explained to me was this is due to poor circulation to the chest wall muscles. When the chest muscles don't get the proper circulation, they tighten up and that causes the constriction feeling - also causes the sensation of being short of breath - if it occurs at night while trying to sleep, then it can be relieved somewhat by elevating the head and chest about 30-degrees - I sleep on a wedge-pillow and 2 other pillows every night. During the day, it helps promote proper circulation by wearing the compressive garments - especially the abdominal ones. This keeps blood from pooling in the mesenteric arteries and veins of the abdomen and forces blood to circulate upward to the chest and above.........

I don't have POTS but, I do have autoimmune dysautonomia - I work full-time - don't have a choice - no work = no healthcare - I have intermittent FMLA and use it regularly since I receive plasma exchanges every other week and must take the next day off - I used to hang my own IV's in the office but, have not had to do so in a long time - I am blessed to have a job that has very flexible hours - basically, as long as I get the work done, I can come and go anytime of the day or night and work any day or combination of days of the week that I choose. This is particularly helpful when I am flaring and having difficulty sitting up for long periods of time.

I have worked since I was 14 years old - (38 years) and I don't see any hope of retirement. With the economy and healthcare rapidly changing (not for the best), I don't think anyone will be able to stay unemployed for very long - unless you have a great support system and family willing to assist. What a blessing that would be! Just this morning, my family told me they were sick and tired of me being sick and tired.....and yet, I continue to work - me, myself and I!

How timely! I just came across this posting......my physician has encouraged me to take all available immunizations this year (pneumonia vaccine, flu shot, and shingles vaccine) - I just took the shingles vaccine 2 days ago and within a few hours, began to feel like I was coming down with the flu. The symptoms have progressed rapidly to body aches, bone chills, fevers, congestion and now, triggering the dysautonomia with weakness, brain fog, and all the other goodies that go with dysautonomia. The pharmacist told me that this type of reaction occurs usually in less than 1% of the population that take the shingles vaccine - I think the dysautonomia sets us up for these untoward reactions and keeps us from getting well in a timely fashion........

Good luck with Ritalin - it really kept my brain fog at bay but, there is a national shortage and my pharmacy has been out for months - threw me into ritalin withdrawl and now that I'm off, I refuse to start back because I just can't take 2 weeks of withdrawl symptoms again. The brain fog is pretty severe though - suspect that is causing the math difficulties - I deal with data and statistics and lately, it has become a foreign language to me.......

I'm no expert - don't know a lot about parasitic infections but, do know a little about amphotericin - it is such a powerful drug that it can really mess up some major organ systems - including cardiovascular and neurovascular systems - it is a catch-22 when putting someone on this type of drug....the docs have to decide if the infection will do more damage than the drug if left untreated - I suspect that without the amphotericin, the parasitic infection would have progressed and eventually threatened your life hence, the decision to give you the toxic amphotericin.

I don't take clonidine but, I have weird neuro symptoms. Lately, I am constantly in a state of "brain fog" - I feel weak and tired all the time - my concentration is not so good and I am having difficulty putting thoughts together in an organized fashion. I get tremors occasionally in my left hand and on the left side of my face. My depth perception is also distorted and I occasionally even lose the perception that I am in my own body.....weird huh? I am just putting it all off on the severe autonomic dysfunction - I figure it is just progressing - all of my MD's have warned me that it will progress - some days more rapidly than others.....so....keeps life entertaining!

Since I have a pacemaker and central IV lines, I have to go to ER when I run a fever. - otherwise, I only go when I know I won't get better without IV fluids - I've managed to stay out of the hospital as an in-patient this whole year (so far) and have only been to the ER one time......keeping fingers crossed.....I have a pretty high tolerance to misery which serves me well......

A heart rate in the 180's will certainly cause chest pain or pressure as a symptom. - the heart is working way too fast and too hard - you need immediate medical attention if it does not come down quickly

Troy is right - as long as you are awake and competent, you have the right to refuse ambulance ride or assistance - if you are unconscious, it is considered "implied consent" for treatment and ambulance transport. I've worked most of my life in the emergency department and I can remember several times having to stand by and await a patient to pass out before we were able to treat them -

Sure sounds like some type of arrhythmia (irregular heart beat or rhythm) - probably positional - different nerve pathways are stimulated by certain positions and it sounds like you have found the position that causes a problem. We all have irregular beats from time to time - dysautonomia that involves the heart can cause some "funny looking rhythms" - (a profound medical term!) - I have a pacemaker and the cardiologist can pull off the pacer a record of irregular rhythms - the thumps, bumps, jumps, and weird chest sensations are funny extra beats and at times, a run of irregular heart beat/rhythm - no real treatment indicated unless you are symptomatic - just ask the MD......

You sound blessed to have such a great supportive husband. I find that it is far easier for me to come to terms with my AAG dysautonomia than it is for my friends and family. I have learned to live with my limitations and know what triggers a crash but, my family and friends...not so much. They want the old "me" to keep on trucking and often make demands that are unreasonable and dangerous for me. When I attempt to explain why I shouldn't do whatever it is they want, I get the rolling eye syndrome and the "yeah sure" answer. Of course, I want my old life back but, I don't live in the past - I take it one day at a time and count it a good day if I am able to go to bed comfortably at night. I just wish my family would attempt to understand and lift me up a teensy weensy bit. I'm a tough old bird and don't need a lot of touchy feely support on a daily basis but, there are times I sure could use a helping hand.......

Yes - I try to keep my dose at a steady level throughout the day. I take 10mg when I wake up and if I begin to feel like my pressure is dropping too fast, I either take another whole one or break off a piece if it is close to the last administered dose. My order is to take 10mg 4 times a day but, a small blast seems to work better for me than a large blast too far apart......

I think it is most important to differentiate autoimmune dysautonomia vs any other type dysautonomia. The treatment for autoimmune dysautonomia (and presumably a few other similar disorders) can range from IV Igg all the way to plasmaphoresis (plasma exchanges). I have been receiving plasmaphoresis now for almost 2 years which has improved my cardiac and vascular dysfunction from the dysautonomia. If I had not persued the autoimmune part and simply stayed with a simple diagnosis of generalized dysautonomia, I would have never received the appropriate treatment - quite possibly would not have lived this long!

Dysautonomia strikes again! - failure of the sympathetic nervous system - I had to have a pacemaker inserted because of it........now, my heart rate is a nice 60-72 - it still bottoms out but, the pacer kicks in and ups my rate quite nicely.....

I'm sure you have spoken to your MD about this?

Few things come to mind:

1. You lack the proper enzymes that allow you to absorb enough Vitamin D

2. You may not be getting enough sun exposure which assists in the uptake and absorption of Vit D

3. Something you are taking (prescription, herbal, etc..) is blocking the Vitamin D

Some people simply must have IV Vitamin D as it just does not absorb from the GI system.....

As a nurse of over 30 years, I can tell you this is quite common. The MD is attempting to paint a picture of you as a patient. You are attractive, well groomed, and obviously care about your appearance. - Someone who is dishelved, unkept, poor hygiene, and dressed strangely speaks to a mental disorder or lack of ability to care for self. This becomes important when attempting to track down the source of an illness or pinpoint a psychological impairment - it also establishes a baseline for the patient - if you were to return to the MD office in the future and you looked markedly different, there is at least a record of how you looked at one point and somewhere along the line...things changed.....

Doctors are so specialized now that maybe your MD is just covering all the bases -

After my hysterectomy several years ago, I expected to have "hot flashes" - it never happened. Recently, I began to have flushing episodes in which I turn beet red and my skin temperature soars - I thought at first this might be the hot flash associated with menopause and my hysterectomy - now, I don't think so. When I have an episode, not only do I have the flushing and the heat but, my heart rate completely bottoms out and I get pre-syncopal until my pacemaker kicks in. I can't seem to associate it with any particular event, like eating, sleeping, etc...I'm pretty sure it is related to the progression of the dysautonomia and the malfunctioning of the parasympathetic system.....as previously mentioned...the "gift" that keeps on giving!

I don't have any problems with compression stockings but, I don't buy the really expensive ones either....the abdominal compression garments send me into orbit - they are so uncomfortable that I can't wear them for long - probably would help the abdominal pooling tremendously but, just too miserable in them......

I know that as a front is coming through, my joints and bones feel achy and throb - I also remember that before I received my pacemaker, the cardiologist warned me about flying - he said I would be in big trouble if I went up in an airplane - my heart rate would bottom and not come back up......so, there must be something to altitude and air pressures...........

I don't know why you would need to see an endocrinologist unless there was something on your blood work that suggested a possible endocrine disorder.....