E Soskis

You had major surgery - it will take a long time to heal - especially with dysautonomia - take it easy - prop your feet up when you sit down - if you are sitting for prolonged periods, work your feet and calf muscles (like you would on a long airplane/car trip) - I had a hysterectomy by the robotic method - less invasive than an open abdominal hysterectomy but, still took a long time to heal. I stayed extra time in the hospital to deal with the dysautonomia and I was off work an extra couple of weeks as well. The dysautonomia flared up at various times while healing - don't be surprised if it hits you even when you think you are well on the road to recovery. Since you went immediately into "surgical" menopause, this will cause the dysautonomia to act up - your MD should be prepared to deal with it - I took the lowest dose of hormones for 6 weeks just to keep the menopausal symptoms at bay while the dysautonomia calmed down. The position of your legs during surgery is probably what caused the pain and "bruised nerve" - I also had a lump in my lower leg with severe calf pain but, an ultrasound revealed no blood clot. If the surgical staff does not pay strict attention to accurate positioning, this is a common thing. I think they also forget that if the surgery is longer than expected, they need to shift your legs around some or apply the machine to your legs that alternately squeezes the calf muscles to keep circulation from becoming stagnant.

I found a small pharmacy in town that compounds and will make salt tablets for me - however, as emartins says, it is a lot at one time - better to take a little all through the day - should absorb better

I'm an RN also and I agree with gackedo - not something to play around with - very dangerous if it is a DVT

My cardiologist told me to eat at least 6 grams of salt every day - that is difficult to do. At first, adding all the extra salt to foods was kind of gross but now, I am used to it. I'm still not sure I'm getting 6 grams though - I think to get that much, I'd have to hang a salt-lick in my office and take a lick every time I walk by - yuck!

I dealt with major depression for several years until my psychiatrist finally said that I didn't have depression per say, but, an unknown disease process going on. I did not respond to any medication and I tried everything available at the time. Once other symptoms of dysautonomia began to manifest, he assisted me in tracking down the problem. It took several more years before I was accurately diagnosed with AAG. (autoimmune dysautonomia) It does not surprise me at all that anyone with dysautonomia has depression symptoms - it goes with the territory.

At the beginning of this disease, I often ran a low-grade fever, felt achy all over, my fingers and wrists would swell, my throat would be sore, and I felt like I was about to have a horrific case of the flu. It would last from a few hours to a few days then just go away. This lasted for many years. It is not as bad now but, I still will have a sub-acute sore throat and feel generally achy at times. I still have joint issues and of course now, I have had such progression of the disease that I am receiving plasma exchanges every three weeks. I also have autoimmune disease and suspect that the generalized inflammation is indeed the problem.

I'm on Azithromycin 200 mg/tsp. 1 tsp per day - increases gastric emptying - similar to erythromycin.

Every day by 3pm, my vision is blurry and dim - I put it off on fatigue and wear-and-tear of the day - better after I sleep some at night

These actually came from a previous DINET posting about anesthesia and surgery - hope they help Anaesthesia Postural orthostatic tachycardia syndrome: anesthetic implications in the obstetric patient: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt= AbstractPlus&list_uids=17179264&query_hl=1&itool=pubmed_docsum Anaesthetic management of a parturient with the postural orthostatic tachycardia syndrome: a case report: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db= pubmed&dopt=Abstract&list_uids=16698864&query_hl=1&itool=pubmed_docsum Preoperative considerations in a patient with orthostatic intolerance syndrome: http://journals.lww.com/anesthesiology/pages/articleviewer.aspx?year=2000&issue=08000&article=00041&type=fulltext Autonomic dysfunction - anaesthetic management http://www.anaesthetist.com/anaes/patient/ans.htm

Whatever form of flu shot or mist anyone can take - please take it! the flu has hit hard in my area (North Florida) and we are seeing patients every day with flu and flu symptoms. Three of our nurses were out last week with the flu - and it's not even cold here yet!

My dysautonomia is autoimmune in origin - if you have autoimmune issues, do not take any form of a live virus vaccine - attenuated or otherwise. Unfortunately, I learned the hard way by taking the shingles vaccine. That was the first vaccine I did not look up and study before taking and I became violently ill from the virus. After a week in the hospital, I realized I would survive and was horrified to learn I had let myself be injected with a form of live virus. Even without autoimmune issues, you never know what type of reaction you will have to a live virus - be very very careful and have a discussion with your physician about whether or not it is right for you.

I take propranolol 40mg every 4 hours around the clock and I don't dare miss a dose. I feel better overall from them even though they can make me feel a bit tired sometimes.

I'm not sure I would attribute your symptoms of hot and cold to "anxiety". Several times a day, my body suddenly feels like it has been dunked in a tub of ice water - my skin is refrigerator cold, my ears ring like crazy, and the brain fog gets pretty thick. Alternately, many times a day, my skin will suddenly feel like it is on fire - so hot, it leaves me weak and pre-syncopal. Very rarely, I will sweat with the heat but, for the most part, I quit sweating years ago. I'm sure it is related to dysfunction of the temperature regulation part of the brain - I keep a blanket throw on the back of my recliner and a small portable electric fan on the table beside my chair.

Great way to describe an unusual sensation - I have not thought of the elevator aspect - I have this pretty regularly - when it is severe, it feels like the entire elevator is in free-fall and I land upside down! -

I don't have any words of wisdom or recommendations but, just know you are not alone. One of the first symptoms of dysautonomia I experienced was a deep, profound depression that was resistant to all medications. I tried everything available - nothing seemed to work. Fortunately, my psychiatrist was also an expert in pharmacological therapies and neurological disorders and he began to put two and two together: dysautonomia depression that does not respond to traditional medications for depression. It's not a chemical imbalance in the brain - it is the nervous system going haywire. Treat the nervous system malfunction and you treat the depression. I'm much better now but, it was a real battle for about 7 years - suicidal at times. Now, I am very vigilant for any signs or symptoms of it re-flaring - I never want to get that bad again. Hang in there - treat the dysautonomia - and know that you are not the only one who has experienced this - I'd give you a hug if I could....

Yes - there is a paradox with midodrine. Initially, my pressure rises and I feel better, think better, and function better. As soon as it begins to wear off, my pressure drops again (often lower than before) and I feel rotten. The positive lasts anywhere from 1-3 hours and the negative lasts until I take another midodrine!

I was close to death - my heart had slowed to 20 beats/min - I was passing out all the time - my cardiologist put me on the right track and I happened to see a neurologist who is the only one in the United States to have made 100% on his boards - he aced them - he has a photographic mind and somewhere in the recesses of his brain, he remembered an obscure article about AAG - he dug around in his office and came out with the article - all wrinkled and worn but, worth the read! I had the antibody testing and he called me in the middle of the night very excited that I had the highest antibody levels ever recorded - so, guess you would say it was "providence" - I don't believe in "luck" - all luck means to me is the proof God intervenes in our daily lives!

I used to be on Provigil - that is, until the FDA pulled it in favor of Nuvigil -almost the exact same drug made by the same drug company but, costs a gazillion dollars more than privigil. My insurance company refused to pay for nuvigil since the label use is only for three conditions: 1. OSA (obstructive sleep apnea) 2. Shift-work disorder and 3. Narcolepsy Once a drug company's patent expires, any drug company is free to compound and sell the drug. The profits go way down and sometimes, it is not profitable to continue to manufacture a drug that is not under a patent. I suspect this is what happened with provigil. The company's patent on the drug was about to expire and they developed a "new" drug . hence "nuvigil" so now, they have another 10-year exclusive manufacturing and marketing deal. They can charge what they want to charge and it is not cheap. FDA was in "cahoots" with them by pulling provigil from the market and allowing only nuvigil to replace it. - gee, sounds like someone got a big pay-off...... Provigil worked very well - until I could not get it anymore. I cannot try nuvigil since I don't have one of the three required conditions to have insurance help with the several hundred dollars per prescription cost. So, if nuvigil is not working for you, don't keep wasting your money and lining the pockets of the drug manufacturer. Go to another, less expensive drug and one that is proven to work well. I have been on several common ADHD drugs that are used off-label for alertness and have still had problems getting them from the pharmacy - same reason that there are so many drug shortages in the USA now: greed of the drug companies. It is not profitable to manufacture a common drug that other companies can manufacture so, all quit making the drug - or, only one company makes the drug - and that company produces a limited supply so that the demand stays high and the cost of the drug will rise substantially - the law of supply and demand.... It all can be terribly discouraging but, keep at it and something will finally work well and you will be able to obtain it regularly! (I take Vyvanse)

Welcome to brain fog! It can get so bad at times that I don't even attempt to carry on a conversation for fear I will look and sound ridiculous. When I can't remember names of people I see every day, I become frustrated and terribly annoyed. My kids got used to me calling them by the name of the dog. I apologize in advance when I teach and warn my students I may drop a sentence or two -may lose my train of thought - and will probably call something anatomical by the incorrect terminology....I have learned to live with it and can even laugh at myself - especially when others giggle with me!

This will sound weird but, I have bradycardia and a pacemaker (slow heart rate) - I am on beta blockers for the paradoxical effect - in other words, the propranolol (inderal) does not slow my heart rate down but, actually keeps it steady and strengthens the muscle contractions (heartbeat) - Beta blockers are also used for performers who have "stage fright" and who sweat too much - for example, a piano player who has sweaty hands.... I am a pianist and used to perform quite a bit - while I never had classic stage fright, I noticed I was much calmer during performances and I don't think it is a coincidence that I had begun taking inderal......

I have AAG - autoimmune origins of dysautonomia - my heart rate drops suddenly and I have a pacemaker to keep me from passing out when the rate drops - hope your MD is considering autoimmune as a possible option for diagnosis.

I've had all three: tunneled catheter in my chest; infusaport; and PICC line. I much preferred the infusaport - it is under the skin and less likely to become infected. Mine lasted over 6 years without any problems. The tunneled catheter became infected and made me septic requiring removal of both the catheter and the infusaport - the PICC was in for over a month last winter and I'm still having phlebitis and problems from it. I work in healthcare and have noticed a trend of upper arm thromboses (clots) from PICC lines - I am not a fan of them. The absolute one central line I will never allow again is a femoral catheter. I became septic three times from them - awful type of IV access - very high rate of sepsis and infections. I would give anything to be able to have another infusaport - alas, I have a "necklace" graft now and will never be able to have any other chest IV lines again. Good luck with your port - take good care of it and it will last a long, long time!

Are you sure you don't have any type of urinary tract infection?

'round these parts, we don't have classic season changes - it's either hot or cold and rarely anything inbetween. Spring and Fall last about 2 days. We've had hurricanes and temperatures in the upper 80's at Thanksgiving as well as a horrific ice storm known as the "storm of the century" on the first day of May. So Fall means that I dread the approaching cold, cold weather as it increases my symptoms, especially Raynaud's......

Were you evaluated by cardiology with any of your episodes - especially while in the hospital? - this may not be related to dysautonomia at all - you may have a heart condition - a conduction disorder. There is a syndrome called "tachy/brady" - where the heart rate fluctuates wildly from very low to very high - (also called sick sinus syndrome) - I would be sure and get evaluated fully by a cardiologist before making any conclusions about what you have or don't have....