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E Soskis

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Everything posted by E Soskis

  1. 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 i
  2. 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
  3. I'm an RN also and I agree with gackedo - not something to play around with - very dangerous if it is a DVT
  4. 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!
  5. 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.
  6. 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
  7. I'm on Azithromycin 200 mg/tsp. 1 tsp per day - increases gastric emptying - similar to erythromycin.
  8. 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
  9. 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&i
  10. 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!
  11. 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 hav
  12. 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.
  13. 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
  14. 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! -
  15. 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
  16. 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!
  17. 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 le
  18. 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
  19. 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!
  20. 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
  21. 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.
  22. 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 al
  23. Are you sure you don't have any type of urinary tract infection?
  24. '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......
  25. 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....
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