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Everything posted by smiles

  1. My Autonomic Dr. is no longer going to see autonomic patients. So I'm on the hunt for a new one. I live in Phenix City, AL. So Columbus, GA; Montgomery or Auburn, AL; Atlanta, GA.... Anyone have suggestions?
  2. Can you have just a slight case of EDS or is it an all or nothing type of diagnosis? Cuz I don't have many symptoms of it. No I haven't been tested for autoimmune diseases.
  3. Buffrockchick, I am still on Lamictal. Been on it for years now...(8 years maybe?) It keeps my seizure under control and I've never had any strange symptoms from it. So my assumption is that it is not that. But I'll definitely keep that in mind though. Primary Orthostatic Tremors effect the legs while standing. My legs are not effected. I've not started on any new meds and the Drs. say it's not a side effect from anything I'm currently on. DizzyGirls, I've wondered about EDS. I do not have the typical symptoms of it. I do however have issues with my right side and especially my right knee. The top part of my right knee will get swollen and painful when I do the slightest of exercise or different movements. Driving a car even sometimes bothers it. It's bad enough that I often wear a knee support while driving, exercising... It helps keep it supported which helps prevent an issue with it. So it does seem loose. I also have occasional swelling, pain, and redness in other joints that comes and goes. I may not have it for months then it may flare up and then go away. I've been told by Drs. that it is just part of getting older - I'm 55. But it's been going on for 10 yrs. About 15 yrs. ago I was tested for rheumatoid and I didn't have that. If I do have EDS it's a very slight case of it. I was trying to do exercises to try to strengthen my neck and upper back but haven't recently. Need to start that again to see if it helps. If it was a slight case of EDS who could help diagnose it or help with it?
  4. I've had dysautonomia for about 12 years and have recently been as stable as I've ever been. Then out of nowhere, new symptom! Upper body tremors. Mostly in my head but it affects my arms if it keeps going. They are quick, rhythmic, uncontrollable movements. It is only if I'm standing or sitting. So it's postural related. It's not all the time. Happens more in the mornings, less in the afternoons and evenings. (My mornings I don't function well anyway and by afternoon and evenings I'm walking and functioning pretty good.) It stops (or I don't notice it) when I'm moving. So if I move or change positions I can sometimes get it to stop. They also stop if I lay down. I have no other autonomic symptoms associated with them, therefore my autonomic Dr. doesn't think it's related to dysautonomia. I went to a neurologist and she said it's enhanced physiological tremors. They are what everyone has that is usually so minor that no one sees it. My tremors are getting worse and I'm not sure that is really what it is. I thinking more autonomic since it only happens when I'm upright. So, anyone have any ideas?
  5. At first I didn't have anything to add until I thought about the timing of her muscle/cramping issues. I had issues with my legs (and once in a while my arms) literally jumping and moving when I'd lay down to get ready to sleep. I had no pre sensation. They just moved. My muscles would tighten and move, then release. I'd had seizure type issues in the past but these new muscle jumping things were not seizures. They finally diagnosed me with restless leg syndrome even though I didn't fit into the symptoms you hear about on tv. Her symptoms are not the same but the timing sure is. I went through a series of trying meds (after trying every herb, homeopathic remedy,... I could find) and finally ropinerol (I think brand name is requip) stopped them and I finally got some sleep. You may be able to see if it is an issue similar to that by having her exercise the muscles that seem affected the most at the first onset of the muscle issue. For instance if it was my right leg that was starting to move I could exercise just that leg and it would relieve the symptoms until I stopped moving it. If I tired it enough, sometimes the discomfort and the spasms would stop altogether. This may be totally unrelated but it's my feeble atempt to help in some way.
  6. Anyone else going to the Dysautonomia International Conference in DC this weekend? I'm going.
  7. Most of the case studies I've read about involve being helped by a pacemaker. I do not qualify for a pacemaker. My heart doesn't skip a beat and I don't have a heart condition. It is purely autonomic involving a hypersensitive vagus nerve. I'm on one med for it that has helped for years. Obviously it is not working as well now. Years ago I contacted one of the doctors that did a case study in CA and he said he'd only seen one case and that was the one he wrote about.
  8. I have swallow syncope and it has recently raised it's ugly head again. I haven't been on here in years. Need some help now. Anyone know of any resources for me or know of anyone else who has it?
  9. Hmmm? Let me count the times? No, lets not! Too many! GI infection initially for almost 3 weeks and was treatment resistant. Anemia. Uncontrolable seizure--maybe 5 different times at 3 different hospitals. Swallow syncope. Surgeries for central line, groshong, power port, heart monitor, and urethra widening. Blood infections. Low blood volumn. Blood transfusions. Kidney flushing. And some just to try to figure out what my crazy body was doing and lack of knowing what else to do.
  10. I have hyperadrenergic POTS dx from vanderbilt university autonomic clinic in TN. Hasn't really changed my meds cuz meds had bad side effects. It does help my docs understand better what is going on though.
  11. I have been a victim of this crazy peeing phenomenon. I would get so thirsty during an episode that I would drink and drink. Problem was I then peed it straight out and more. This in turn would make my symptoms even worse. Mine was so bad that sometimes it would send me into seizure type activity. By the time I'd get to the hospital and they emptied my bladder by catheter, I had 900-1500 ccs of urine flow out of my bladder--which they said was what prompted my seizure. My seizure would stop once they emptied my bladder. Go figure! It's called kidney flushing. Your bladder usually holds 300 to 400 ccs. Over time (years) My doc and i have found things to prevent this most of the time. He put me on Thermatabs (or Thermotabs, can't remember which spelling) which are salt and potassium tabs. Then he also told me to drink 64 oz of gatorade, powerade or other hydrating drinks. Both the salt and the gatorade help retain the fluids instead of them going straight out of your body. Now they have come out with 1 gram salt tabs. My pharmacy orders then for me. Vanderbilt University Autonomic Center now recommends taking at least 3 grams of salt a day and up to 8 grams. This has made a tremendous difference for me!! On a good day I take 3 and on a bad day I take at least 6. Sometimes they can upset your stomache. If I take it with a whole glass of water or with a few bites of food it prevents that. If I take 2 grams before I go to bed I do not have to get up and pee at night even if I drink alot before I go to bed. I'd start with 1 gram though and see how it does for you. I hope that this helps some of you fellow mega peeers. ps. I'm also on a volume building med, yohimbin, and phenobarbital to increase cell permeability. and a multitude of other meds to help with other symptoms.
  12. I have a cardiologist. Took me 3 yrs to find a doc that would stick with me and really try to help me. I've had him for 3 yrs now and he has helped me a lot. He is good at so many things. I can't even guess how many drs couldn't help me before I found him!
  13. Odd symptom. I feel like I'm still half asleep when it happens. My hands shake, usually both of them, just for a few seconds. My hands are together against my upper chest when it happens. It kind of awakens me more but sometimes I go right back to sleep. Usually happens only in the mornings. Don't have symptoms like this any other time. What do you think?
  14. I have POTS but also have many other autonomic conditions. I am a rare bird! Mine at times are so bad that I have been home bound for months or in the hospital for 2-3 wks at a time. I have Neurocardiogenic syncope, swallow syncope/deglutition (there are only 10-30 people in the US who have this one), exaggerated sympathetic vasoconstrictor and vasopressor responses (as dx by Vanderbilt autonomic clinic) mitral valve prolapse (which has been almost non existent for me the last 3 yrs), sluggish colon, convulsive like muscle spasms, kidney/ bladder flushing (now controlled by 4-6 grams salt tabs a day), pre menopause, slurred or absent speech during flare ups..... I know when I was hunting for support this was one of the first sites that I came to. It was good but at the time my symptoms were so severe that I felt a bit out of place. Now that I have more accurate dxs and more understanding of what is going on in my body it is easier for me to cope with. So I know how you feel, even though I also have POTS. POTS is one of my lesser conditions and causes less symptoms than other things.
  15. Hello, Haven't been on in a long time. I've been doing really well for me. I attribute part of it to my increase in salt tabs. I used to use the therotabs--about 4 to 5 a day. They have in the last year come out with 1 gram salt tabs. That is a higher amount than the thermotabs. I take 4-5 of those a day and it has helped me tremendously. It helps me to retain the fluids I drink. I had a real problem with fluids going straight thru me. I drink at least 8 oz with each tab and that helps me retain it and helps me get enough liquid intake also. My doc goes by what Vanderbilt University autonomic clinic recommends. They recommend up to 8 max grams of salt tabs a day. You can ask any pharmacy to order them and they will. They are rarely on the shelves. Try it you'll like it.
  16. thanks, thankful, glad I'm not alone in my coping process.
  17. Lissy, After I posted last night I thought some more about how to describe how I feel when I swing from 2 dramatically different situations. The difference in my health is so dramatic in the 2 extremes: one is bed bound, unable to eat solids, unable to communicate effectively because of my speech, unable to do things with my kids, drugged up to stop major convulsive and autonomic muscle control issues, ect. The other is being up, walking around the house, going places in my W/C, eating regular foods, thinking clearly, having fun, laughing and normal speech. When I feel better I try to forget how bad it was and try to enjoy the moment. The ?healthier? me tries to imagine that this state I?m in will stay and that this is my normal. The ?sick? me after a awhile seems to forget what it was like to function. The ?healthier? me tries to forget what it?s like to be the ?sick? me. I?m very aware that in both extremes I am still just me, the same person, just in extremely different levels of functioning. Just as the seasons change, so do the seasons in our lives. Just as the seasons in our lives change, so do the seasons of our health. Didn?t want anyone to think I really have 2 personalities. I am definitely the same person. So you are not alone. I used to have more gradual changes. When I am really down for an extended period of time?like months at a time, I don?t feel like this. Or when my health is stable and somewhat functioning
  18. Lissy, I so can feel what you are going thru. I go to a support group and sometimes describe my struggles with the 'sick' me and the 'feeling better' me. I agree that in the last 7 months that there seems to be 2 different me's. I so enjoy the half functioning me. I live in the moment and thoroughly enjoy every day. I celebrate life. Then when my body crashes I am stuck in bed. There is such a major difference in my functioning levels that the vast difference is what makes it seem like there are 2 me's. Sometimes there is little inbetween times. Recently I'm either real bad or doing better. The extremes are frustrating. The swing is difficult to deal with. It's like I have to readjust everything when the swing happens. I'm on the upswing now and functioning better than I have in years. It is sooo nice. Then when I crash I almost fear the relapse because I have enjoyed and so desperately want the better health. I really can relate to feeling like 2 different people with 2 different functioning levels and 2 different coping skills and 2 different levels of brain function. The brain function thing is so different. I believe that the difference in the way my brain works during these times affects my perception of my realities. My family also has to do different things when I can care for myself and my family verses when they have to take care of me. The difference in the way they have to treat me or care for me makes the swings in my health seem more like there is the 'sick' me and then the 'I can take care of myself and you' me. Don't know if it all that makes sense to any one but it has become my life. I choose to take each day as it comes and what ever or who ever I am has to be ok with me to maintain my mental health. It's not easy but my attitude has to be believing that I have purpose in each stage of my life, however difficult it may be. It seems that each time I adjust to my health changes, then my health seems to change again. What a strange disease! Hang in there and know you are not alone. I guess we make 4 people instead of 2, huh? LOL Oh well, such is life. God understands me even if I don't understand myself. Lots of love, Smiles
  19. Thanks Noreen, I needed that bit of laughter and encouragement. Yes, I love cats too! I can def see the similarity between me and my cat with a hair ball! Mine is just a bit more violent in nature though. Me with an imaginary hair ball! lol I loved you frisbee analogy. I also had a swallow study done a few years ago. Thanks for the hugs. Smiles
  20. I have also choked on my own saliva. That is actual choking which eventually clears by itself or sends me into an autonomic flare up. Those are really hard on my body. They happen only a few times a year, mostly just randomly. Yuck! This gagging thing is not from anything being in my throat and not associated with eating or drinking. (Neither was the choking on my own saliva.) This gagging thing comes only when the muscles in the rest of my body begin to tense and contract. I have a strange feeling right before it all happens. Had another problem this morning but w/o the gagging issue. All I did was sit up and whammmo- autonomic craziness.
  21. I am having the strangest episodes when I have a flare up. I am now on a an anti-convulsive med (Lamictal) which has stopped my convulsive activity but my muscle contractions during my flare ups are extreme now instead of moderate. I have found that 1/4-1/2 of a 10 mg muscle relaxer quickly stops the episodes. Which is good cuz the convulsions used to last up to an hour or more if they were real bad. My weird symptom now is that during the muscle contractions I have some sort of muscle contraction in my throat. I look and sound like I am going to throw up but I don't feel like I am going to and am not sick to my stomach. It is difficult to explain what it looks like. It has got to sound terrible to those around me. It's like I am gagging on nothing. I guess it is more like a gag reflex. It starts like a little cough and then gets stronger and more gag like. If we don't catch it quickly and medicate or if it hits real fast, then it turns into looking like I am going to throw up but just gagging real hard. Makes my eyes water. This craziness happened again last night. I started my period yesterday too and I know this flare up was from that! Anyone else with these symptoms or happen to know why my body is being so obnoxious. smiles
  22. That is so cool that you found someone locally that has the same thing you do. I would love to have someone that close with some of my conditions. Enjoy!!
  23. Reen, you brought tears to my eyes. Thank you for your encouragement. That happens alot to me. I get frustrated or have to vent and I share my pain. Somehow it ends up encouraging someone else. I have asked God to help me continue to make a difference in others lives, which is what I did before I got sick. Somehow He continues to do that despite my current life's situation. Thanks again. Smiles Oh, I looked up that pheochrom..... and I don't have those symptoms. Thanks anyway.
  24. Thanks Thankful, I needed some encouragement. Sue 1234, I will look that up now. I had tests several years ago and all they found was a sluggish colon (which means my large intestine doesn't get the message to contract so I have to take something to make my bowels move). And I also had my uritters and urethra enlarged to allow for freer flow of urine. Thanks
  25. I suppose most of you feel like this at one time or another. I'm going thru a phase where I really am tired of having this disease control my life. I start feeling half normal and start doing things and then I go to the bathroom or something basic like that and my body freaks out and starts shaking and having muscle contractions (I have michturition syncope). I hate it when I am out--like at church and it happens. I refuse to stay home just because my body can't control its self. I have a supportive family, a reclining w/c, and meds to take when it happens, and cell phone to call my familly from the bathroom, but it all seems so rediculous to me. Why should this happen to anyone! This happened Wed. pm at church. It takes me a day to recover from one of these. Then I'm ok for a few days. No BM problems, wallking again, talking normal, eating ok,....then whamo,...out of the blue, this stupid disease takes over my body and I'm down in bed again. Makes me just want to scream!! I will not stop my life just because my body is acting weird. I was extremely off balance that day. After stumbling around for a while I got in my w/c and even my depth perception was off. I ran into the walls twice that day in my w/c. Made a real mess. Still went to church. May be I should have stayed home cuz sometimes when one thing is off (like my balance) then other body systems tend to be off too. I don't want to be run by my body though. If I stayed home everytime something wasn't quit right I'd never go anywhere. I WANT MY LIFE BACK!!!!!! Frustrated Smiles
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