E Soskis

There are a number of antibiotics that have neuro-toxicity as a side effect. Anyone with dysautonomia should carefully query their MD before taking an antibiotic to find out if it is neurotoxic. Unfortunately, some of these antibiotics are the most effective at killing some big-time bacteria that could actually cause more damage to the nervous system than the actual drug does.

My fingers take the hit before my feet do. Yes, neuropathy is part of dysautonomia. Now that it is cold outside, I can hardly even walk to the mailbox without my fingers turning white and becoming painful - even with gloves it is quite painful.

You need to make your urine inhospitable to bacteria - change the pH. You can drink tons of un-sweetened cranberry juice or you can take cranberry pills - I took "Theracran" capsules and was able to beat a difficult, stubborn urinary infection by a hospital-acquired bacteria. I was facing readmission to the hospital for IV antibiotics but, when I found out about this pill, I tried it and it worked! It took about 2 months but, it worked. The company is on the web and I believe the name is "Theralogix" - I ordered the pills directly and they automatically mail them when it is close to time for refill. If you have a prescription from your MD, it may in part be covered by insurance or by a health savings account. Of course, you should check with your physician before you order and take them - just to be safe. I have a relative with chronic interstitial cystitis and her urologist is the one who recommended the Theracran - he said it was the only cranberry pill on the market that actually works well.

Sounds like you need to stop and notify your MD. If you truly are not getting enough circulation to your feet and they are turning that sallow color, the pain can be quite intense and you could have damage to your feet and legs from lack of circulation - many of our diseases go hand-in-hand with Raynaud's Syndrome. I have Raynaud's to my hands worse than my feet. This cold weather is brutal on them - even with gloves on and staying indoors as much as possible, it is quite painful. Your physician needs to recheck you and be sure you are properly diagnosed.

Bigskyfam: I take propranolol for the paradoxical effects - my heart rate actually is too low but, the beta-blocker strengthens my heart beat and makes it more effective and strangely enough, does not lower the rate any further - I should mention I have a pacemaker. My intrinsic rate is 20-40 beats/minute, the pacemaker keeps it in the 70's-80's - too high rate for me is 100. I don't think I have been over 100 in at least 7 years. This is why I cannot exercise - I can't place any extra demands upon my heart muscle - it can't compensate by increasing the rate - so, the rate just drops out and I have long pauses with no heart beat, hence, the pacemaker insertion.....

I take 40mg of propranolol every 4 hours - even in the middle of the night. I have taken it for at least 7 years and have had no problems. My problems occur when I miss a dose - I am so used to waking up at night that I don't even have to set the clock anymore!

Yep! Weird head feeling - sometimes brain fog, other times feel I'm sort of disconnected and "out there". Have constant ringing in my ears, feel headachy, occasional visual disturbances and spatial orientation issues, just feel kind of freaky. I would love to have a day when I could think clearly and sharply as I once used to be able to do. I guess those days are over. It is especially annoying and embarrassing when I am attempting to teach and I suddenly lose my train-of-thought - I mean, BAM, it's gone!

When the disease really hit hard, back in 2008, I had to take a desk job. Since then, I've still had periods where I had to take extended times off (several weeks at a time) from the disease or complications of the disease related to other surgeries and illnesses. I have Intermittent FMLA and renew it every year. I would suggest that you protect yourself with the Federal "Family Medical Leave Act" so that your employer won't turn around and fire you just for being sick. FMLA guarantees you up to 12 weeks unpaid leave per year off if you are out due to your medical condition.

I tried to drink over 100 ounces of fluid a day (at least) and felt like I was always sloshing around. I found that due to the GI issues of dysautonomia, I have irregular absorption of food and fluids. IV fluids directly fill up the vasculature without having to go through the GI absorption process. It is a temporary fill though. The blood flows through the kidneys and therefore, the IV fluids end up going through the kidneys and subsequently urinated out....Remember, our vasculature is very floppy and does not constrict like it should - it takes more fluids to "fill up" the pipes - probably one reason IV fluids work so well.....

I've tried all sorts of diets - the last one being the gluten free diet. I am convinced that I can gain wait on any diet - even a food-free diet! I'm with Katybug: I think it more of the medications I take and the lack of exercise due to intolerance......

I don't have so much of the muscle burning but, I do have profound weakness of the muscles at times. Sometimes, it is even hard just to lift my arm up. I have dropped when I stepped out of my car due to leg weakness - It is almost like my large muscles are not only weak but, feel very heavy and hard to move. I have no idea what causes this - like all the other weird symptoms we have, I am putting it off on the dysautonomia.......I don't know how to make it better - thank goodness it only lasts for a short time.

I always thought that elevated C-reactive protein indicated an inflammatory process - if it is up chronically, it would lead me to suspect a chronic disease that is inflammatory in nature....

Natops: I am a plasma exchange patient. I had very positive antibody testing for AAG. I began plasma exchanges 3 years ago -first with an inserted permcath in my right upper chest just below my clavicle. The vascular MD then attempted multiple times to create a fistula in my left arm - it never worked and always clotted off. This was because of my chronically low blood pressure. You absolutely must maintain a blood pressure over 90 systolic at all times to keep a fistula working. So, if you have multiple episodes of low blood pressure, then you cannot have a fistula placed in your arms or legs - don't even try it! I kept the permcath hanging out of my chest for over 2.5 years until they became infected and I ended up with blood infections. My latest procedure was to have a "necklace" graft created and placed in my chest stretching from one clavicle across to the other - like a necklace may hang. It is not too visible but, it can be seen if I wear a V-neck shirt. I have used it once and it worked very well. I am trying to not have to go back to plasma exchanges so frequently - I'm stretching them to every 4-6 weeks. They are very expensive but, I have excellent insurance. (thousands of dollars per exchange) The surgery for the necklace graft was pretty awful - very painful since they cut down through chest muscles and through nerves. I had the surgery at the end of August and I still have pain but, not as severe as at the first month or two. So far, the plasma exchanges have worked well - there have been times that it seemed they were not working great but, I've always bounced back. I did use IVIG for 2 years before starting plasma exchanges - it worked great for about a year and a half but, then abruptly quit working and I started having major allergic issues with the IVIG. I wish you good luck in whatever you choose to do. If you truly are going to start plasma exchanges, PM me and I can give you some tips on how to make it go better and what you need to do prior to exchange.

So far, so good with plasma exchanges - as long as the necklace graft holds out, the surgery could be considered worth it but, wouldn't do it again (I say now) - I'm like you...annoyingly optimistic and I refuse to dwell on the future - what might be - what could be - what is to come - etc...it's the only way to keep going otherwise, we get mired in hopelessness and helplessness - and that is not a place anyone should get stuck or even visit......

It is so interesting how some treatments work for some but, not for others - we really have to find the best treatment specific for us. I also had central lines/perm caths sticking out of my chest for 3 years - until I got infected through them - I battled blood infections now for 3 months and have finally been given the "all clear" - I had a graft in my chest inserted (like the fistula that would be created in the arm) - called a "necklace graft" - it is working well so far - there just does not seem to be an easy solution to anything and every treatment has risks/benefits that we have to weigh carefully.

I was on Privigen for about 2 years before it quit working. I switched to plasmapheresis (plasma exchanges) and have been doing that for about 3 years. I would not go back to IVIG ever again simply because by the time I quit, I was having increasing allergic responses to it. Immune globulin is difficult to obtain so, don't know if you can switch to another brand. The only type available in my area is Privigen. I would talk it over with your physician - he/she should know whether or not you are a candidate to ever return to IVIG usage or if you need a different treatment.

Absolutely surgery can cause all sorts of dysautonomia problems - right afterwards and delayed. I had a robotic hysterectomy and was told I would recover quicker and able to go back to work in about 4 weeks....I had a horrible time after surgery and at 6 weeks when the MD would not allow me anymore time off, I had to go back extremely symptomatic. At 3 months, I was re-hospitalized due to dysautonomia complications and a paralytic ileus. It probably took me about 6 months or more to fully recover from the surgery. I just had surgery at the end of August again, this time for creating of a "necklace" graft (for plasma exchanges) and I am still trying to shake off the effects of the surgery - working but, it is very hard. MedicGirl, you must be a very strong person - I admire what you are able to do and am so sorry you have more to go through. I know it won't be easy but, you have lots of positive thoughts coming your way (and prayers).....

If anyone has a remedy, please let me know! The ringing in my ears is constant - very annoying. When the dysautonomia is particularly bad, the ringing is so loud, I have trouble hearing other things.

Does the word "quack" come to mind???? - talk about utter nonsense! I would definitely complain to the medical board. No telling how many complaints this one has had lodged against him - guarantee you are not the first! I would also check your medical records and diagnoses - especially the ones turned into insurance companies and other agencies - you need to be sure you have accurate information on your records. I checked mine recently and was surprised to find multiple incorrect diagnoses.

I think I'm over the guilt but, not the disappointment - I will be forever disappointed that I cannot participate in normal activities and have to sit on the sidelines - There is joy to be found on the sidelines - just wish I didn't have to miss so much though......

I suppose that the ganglia could remain intact and functional - it's just when the antibodies attach to them, they are rendered useless. So, we could assume the actual ganglia are not damaged but, they are not functional either. My cardiologist said that the cardiac ganglia are different from the ganglia in the rest of the body. He said once the antibodies attach they do actually destroy the ganglia and the destruction is progressive. Whether it is the actual ganglia or the nerve pathways that become damaged, I don't know - the end result is the same: dysfunctional nervous conduction in the cardiac tissue causing arrhythmias and poor cardiac function. I have noticed that since starting plasma exchanges, I have recovered some nervous system functioning in all areas except the cardiac system - my heart continues to deteriorate with much arrhythmias and dysfunction. I do become quite ill after plasma exchange and it takes up to 48 hours to recover but, then I'm "good" for a few weeks until the antibodies build up again requiring another plasma exchange - kind of a never-ending cycle......

I had a hysterectomy a few years ago and hoped it would help my symptoms as they seemed worse during my period - unfortunately, that was not the case - my disease continues to progress at varying rates - now, I just don't have to deal with periods AND dysautonomia at the same time!

I think we just have to learn what our "triggers" are and attempt to avoid them. Hot showers are one of mine as well as lifting my arms above my head, standing too long without moving around, sitting upright with legs dangling too long, going for prolonged periods of time without eating, and singing for prolonged periods. I'm sure everyone has a list of their "do's" and "don't's"

I sweat very little - not at all until I began plasma exchanges - now, just a little. I have noticed I get very hot quite quickly - not like a hot flash but, just generally hot but, can't sweat to cool down. I keep a fan near my recliner and by my bed just in case I need a little help to cool down. Now that winter is approaching, I am having cold spells - I lose circulation in my fingers and my legs turn mottled and cold. I haven't decided which is worse, too hot or too cold - can't cool off yet, can't warm up either...

Yep! Brain Fog - I've noticed a distinct difference in my mental functioning over the past year - much worse since August (had major surgery and a few more procedures requiring some type of anesthesia) - I'm convinced I left a few brain cells in the operating room - combine that with the dysautonomia brain dysfunction and I'm kind of challenged now with higher brain functions......quite annoying to not be "tarp as a shack" anymore......