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E Soskis

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Posts posted by E Soskis

  1. It is not the particular day of the week but, how loaded the day is. I know on the days I have to go from sun-up to sun-down, I am going to get very tired and have an increase in symptoms. I know that when I have to take care of grandchildren for a protracted amount of time, I will get tired and have more symptoms. If I have to stand up for very long, I'm going to have a harder time than when I can stay seated in my quiet little office. I try to balance as much as possible but, it seems everything happens at once and some days are just long and difficult!

  2. It seems many types of dysautonomia begin with an arthritic autoimmune disorder.......I get pain in various joints for no apparent reason - my wrists will feel quite stiff and painful or my hip will feel like it has a kink in it. My ankles will throb or my knee will give me a fit - never predictable - always inconvenient! - low-grade fevers seem to accompany the joint pain....all point to an arthritic inflammatory response.......gotta love dysautonomia....never a "dull" moment and something new and different almost every day!

  3. Well.....in the past couple of years, I've had a lot of surgery. Be sure your surgeon and anesthesiologist know about your medical condition and that they understand what it is. I've done a lot of teaching. I found it helpful to be one of the first cases in the morning - that way, limits the amount of time you are unable to eat or drink. I agree with the advice to get a liter of IV fluids before the procedure - I've had OR staff refuse to give me fluids and I didn't fare as well as when I was adequately hydrated. I'm such a regular with the staff now that they know me and trust me when I tell them what I need. If your MD or anesthesiologist will not listen to you or seem to just be patronizing, be very wary. Be sure someone is with you that knows all about you and your condition - especially when you are trying to recover enough to go home. I plan never to have out-patient surgery again - I will be admitted for at least 24 hours after every surgery so that I receive IV fluids to rehydrate and have enough blood pressure to actually get up and walk.

  4. IV Saline is a beautiful thing! It definitely makes me feel better

    One of my MD's suggested I try a gluten-free diet- tried that for about 2 months and actually got much sicker. I freely salt all my food and I drink anywhere from 50-100 ounces of fluids daily. I don't tolerate beef well - meat in general must be scant or it sets off gastroparesis-like symptoms.

    Caffeine is a no-no. Heavy, fatty foods is not good either. I love sweets but, they don't love me. If I pig-out on very sweet treats, I become very nauseated and get a terrible headache.

    Total volume of food is an issue: only eat a small hand-full at one sitting - any more than that is not pretty. I am used to a range of sizes: I have been as small as a size 3 and as large as a size 14! The past few years, I've settled into a solid 8-10.....so, I'm just happy with whatever the size-d'jour may be!

    I am like you Kelly - I co-teach Sunday School and spend a lot of time studying the Word - that is my ultimate comfort and my long-term support!

  5. Can't take extremes of either direction. I live in FL where the misconception is it is sunny and warm year-round....not so much! North FL is the same as South GA and it can get pretty cold in the winter. I know you folks in the North are probably laughing but, year before last, we had weeks of temps in the 20's - thought I'd freeze to death! Cold kicks up the Raynaud's and my fingers will blanche to white with no feeling - even with warm gloves on. I just can't take the cold. On the other hand, I can't take extreme heat either. When it is 90+ in the shade and the air is as thick as molasses, I go down. I don't sweat so, I cannot compensate for heat. I'm not sure when there is a "good" season - in Florida we have only 2 seasons - hot and cold. Fall lasts about 2 days and Spring maybe 3 or 4 days. You wake up one winter morning and it is 25 degrees - the next morning it is 70 degrees....go figure! You ask someone how they liked the "Fall" and the response is, "what Fall?"

  6. I am truly a morning person - I wake up without an alarm clock about 5am and am at work by 6:30am most days. Just don't ask me to do anything after 3pm 'cause I begin the downhill slide toward the early evening crash about that time. Even my boss knows not to schedule any afternoon meetings for me because I can't think straight and may sound a little goofy during the meeting!

    All these crazy times that people function best make me wonder how fluctuations in hormone and catecholamine levels vary with the different dysautonomias - and if knowing certain dysautonomias raise and lower different hormone/catecholamine levels at different times, could a good time of day vs a bad time of day be predictable? - interesting thought.......anyone else out there have any thoughts on the subject?

  7. I have noticed that highly processed foods and sugary foods tend to bring on my symptoms quicker than other foods. Yet, it seems like the severity of symptoms is more related to the volume of food consumed - if I eat more than a hand-full of food at a time, then I find myself bloated and distended. I am just coming off of over a week of gastroparesis symptoms that only resolved when I resolved to stick to liquids and soft foods like puddings, jello, and other similar delicious treats (not)! It took about 3 days of a quiet diet and a nip of reglan to make my stomach "wake-up". Today is the first day in over a week that I actually ate some solid food - I sure wish I knew what exactly triggered the abdominal distress but, like most dysautonomia symptoms, there isn't always any rhyme or reason to the flares.....

  8. For what its worth....I was always taught that cortisol levels are lowest in the morning hours and flourinef sort of works like cortisol so.....I took flourinef twice a day: once in the morning and again at about lunchtime. I then took a low-dose phenobarbital in the evening and that supposedly stimulated a bit more cortisol production over the night hours. This regime kept whatever cortisol I produced at a more steady level - flourinef assist during the day and phenobarb assist at night. - At least that was what one MD explained to me and he specialized in generalized autonomic failure patients. According to my body, it worked pretty well.......

  9. Wow! I feel your pain. I spent hours in the ER yesterday getting IV fluids, IV antibiotics, and lots of lab work and cultures done - all because I dare run a fever when I have a pacemaker and several central lines.....so frustrating. I've learned to not run to the MD every time I spike a "little" fever because I end up in the ER. However, when fever is more than I can manage and I'm in a flare-up of the dysautonomia, I have nowhere else to turn. It took years for the staff in the ER (including docs) to finally realize I'm not a crazy person when I check-in. It seems I have to educate, educate, educate everyone about dysautonomia and AAG each time I am in the ER or an in-patient at the hospital. I know dysautonomia is "rare" but, it is becoming much more common and when I'm really sick, it is hard to teach, instruct, and monitor what is going on. Do you have an advocate that remains with you when you go to the hospital? - I don't have anyone and I've been able to prevent some serious errors before they actually were performed. What happens to us when we are so sick we cannot maintain that sort of vigil? It scares me to think about it!

  10. I once had an anatomy and physiology professor who said "if you don't use it, you lose it" - and so it is with muscle tone - I also spent over an hour with a physician who tried to explain to me how the brain-body response connection works causing my "psychiatric" symptoms. He finally admitted he could not explain how my "psychosis" was causing sudden heart rate drops and passing out. So, be careful with claims that you can control your heart rate responses with biofeedback and medications for "psychiatric" conditions that don't exist!

    My physician team now work together and all agree that exercise and toning would be nice if I could tolerate it but, since I can't, just do what I can do. I no longer even walk around the block because I might end up in someone's bushes in their front yard. I walk a few feet to the stop sign at the end of the road, turn around, and walk back. It's all I can do so, it is sufficient. If you can tolerate conditioning exercises, go for it! I used to be an aerobics queen and worked out at least an hour a day for several years. Seems sort of strange now that I can only walk a little bit but, Oh well!.....I am grateful for whatever I can do and refuse to beat myself up for not being able to perform any exercise conditioning.

  11. I have increased midodrine to 20mg upon awakening in the mornings - any less and I don't have enough blood pressure to function. I then may take another 10mg about lunch time so I can make it through the afternoon. By the time I get home, I'm pooped out and pretty much retire to my recliner. Before I was diagnosed properly, I was taking between 60-70mg a day and still having major BP drops. I think it is the disease that waxes and wanes requiring dose adjustments. Certain treatment regimes will alter the need and dose requirements for midodrine. Perhaps there are other drugs that are causing your varied responses? - also, stress and hormones can alter responses. It's not a perfect drug - lots of side effects and difficulties. Of course, the disease requiring the use of the drug is also difficult and unpredictable!

  12. I've been on beta blockers for years but, I have AAG and not POTS - some people seem to tolerate them better than others - I could not make it without them - I take propranolol 40 mg every 4 hours - around the clock - even in the middle of the night - if I miss a dose, I have terrible heart arrhythmias that can lead to nearly passing out - I have a pacemaker to pick up my heart rate if it slows down too much, either from the beta blockers or from the actual disease of AAG - I have known people that take low-dose beta blockers for "stage fright" - it helps calm them down and settle their nerves so they can perform more effectively. I also know people that take low-dose blockers for migraine headaches- a sort of preventative. So, I would say that they are quite effective for many things as long as you can tolerate them. Of course, if you ever take a medicine that makes you feel worse than you did before, it might not be the right medicine for you! - ask your doctor!

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