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Everything posted by khaarina

  1. I recently found out that I was denied SSI...again. Third time was not a charm. Maybe those of you still trying for it will learn for my mistakes. So, here's what went wrong. No lawyer: After being turned down the second time I applied for a hearing and hired a lawyer. He accepted my case, we signed a contract, and I felt a huge weight taken off my shoulders. Four days before the hearing I suddenly realize, crap! it's four days until the hearing and my lawyer hasn't prepped me. I don't even know if he is going to show up. I call and call and call, but nobody answers and nobody calls me back. So I email and they replay saying, oh he's not going to be able to make it to your hearing due to a conflict in his schedule, but don't worry, we won't be charging you for our services. What services?? So I had to go to the hearing with no legal advice and no lawyer. Not enough evidence: After talking to the judge and reading the paperwork they sent me afterward, I realize that all the judge wants is proof. I worried myself to death over every little detail. I did my best to appear trustworthy, I didn't exaggerate or underplay my condition, I gave them records of every single doctor visit since the day I got sick three years ago, including a report from my primary saying that I had a positive tilt table test and describing my symptoms. None of it mattered. I could not have stressed more that I am severely symptomatic if I stand for more than 5 minutes or sit for more than half an hour, but it was meaningless to them because it didn't come from a doctor. I firmly believe that if I had shown up with a lawyer and a doctor's note telling how long I can sit and how long I can stand, I would have been approved. Had I hired a real lawyer instead of a big deadbeat law office chain, I would have been told what I needed to bring in order to get approved. I have the option of appealing, but it is a long arduous process and I don't think I can take it. This whole thing has brought on insane amounts of stress, which of course only makes me sicker. I could go to my doctor and ask for the statement ssi judges really want, but the second I bring up ssi to a doctor, he shuts down. Suddenly I become one of those people, and he stops trying to fix me and just wants me to hurry up and get out of his office. I am at a loss.
  2. Blue, You have described exactly what has been going on with me lately. I used to be cold all the time, but now I am hot all the time and every night I wake up feeling like I am cooking from the inside. When this happens, the veins in my hands and feet become bright blue like I drew them on with a blue Sharpie (I am fair skinned). I keep my house at a constant 69 degrees F, so I know it is just me. I am between doctors right now and I don't know what is going on exactly but I suspect that it is due to vasodilation. I say this because when I take my Midodrine I vasoconstrict and feel cold, but I was instructed not to take the Midodrine at night due to the possibility of supine hypertension, and that is when I am the hottest. This is just a guess though. The only thing I have found that helps is to rinse my feet and hands off with cold water (cold showers wake me up too much), or hold an ice pack against my wrists and palms. I also drink a lot of water before going back to bed. I hope you find some answers.
  3. I have had many mood swings since I got sick. At first I attributed them to the frustration of not knowing what was wrong with me, but I continued to get them after my diagnosis. My doctors kept prescribing antidepressants but they didn't help. Most of them did nothing, some just made me feel like a zombie. I eventually realized I had a hormonal imbalance, based upon symptoms and relief after hormone replacement. I am now taking birth control pills continuously and my mood has stabilized completely and other related symptoms such as oily skin improved as well. It may not be the cause of your irritability, but it is worth looking into if you haven't already.
  4. I had that exact symptom for several months, I think I even made a post about it. I suspected it had something to do with high or low blood pressure while sleeping, but I never figured it out. It eventually went away, but I am still curious about it. Please let us know if you figure it out.
  5. Great video! I posted it on facebook and said, "If I meet another doctor who says, "What is POTS?" I am going to scream. Please share. We need awareness. We need research and doctors who know how to help." I urge all of you to do the same.
  6. I have had this nagging pain in my upper left arm off and on since the day I got sick 3 years ago. It is a sharp throbbing pain and it feels deep like in the muscle or bone. It worries me because my doctors don't know what it is. They even did an x-ray once but it showed nothing. Sometimes I think maybe it is nerve damage due to a birth control shot I got every few months 14 years ago, but the pain comes with POTS symptoms so maybe it is heart related. Does anyone else get this? If so, do you know what causes it?
  7. I never have an appetite in the morning so instead of eating solid food I drink Carnation instant breakfast. It has plenty of nutrients, I love the taste, and it helps me get more fluids in the morning. I also lose my appetite if I've been physically active. This becomes a problem if I go to a restaurant, because of the effort it took to get there, or when I cook a meal, because by the time I am done cooking I no longer want to eat. I haven't found any solution for that except to avoid activity as much as possible before meals.
  8. Being a ginger myself, I half expected this post to be about redheads LOL. I have heard about ginger putting people in the hospital. I have stayed away from it myself but it is crazy to think something as simple as ginger could be harmful to us.
  9. I read that Zantac is good for MCAS too. I can't really tell if it helps me, but I take it anyway. It is super cheap, otc, and haven't had any bad reactions to it. I have found that it is no substitute for Prilosec. I tried replacing my Prilosec with it and my heartburn came back with a vengeance. So now I take both, one in the morning and one at night.
  10. I don't know if it was the same stuff, but I was put on oral steroids due to a skin reaction and for the next several days I felt better than ever. The doctors can't explain it but I suspect that inflammation due to histamine is the reason. I am now taking Claratin 2x a day and benadryl at night (both self prescribed) and I feel a lot better. Before the antihistamines I had chronic sinus pain, tmj, general itching and skin reactions. I am still having some skin issues but it is better and the sinus stuff is gone. If I forget to take my second dose of Claritin about 8 hours after my first one, I start sniffling and sneezing. Also I just feel better in general. More energy, more clarity, less puffy feeling, etc. I wish I could take sterioids regularly but my doctors are reluctant to prescribe it because of the side effects.
  11. Please let us know how it goes. I am going to have to fly in a few months. My doctor said he doesn't recommend that I fly, but he also admitted that he is no POTS expert. I have the same concerns you have. Try not to let the anxiety of flying get to you. Good luck!
  12. Gjensen, Anxiety or anxiety-type symptoms come with the disorder. They wax and wane from day to day and I have found that once they start, they come on with a vengeance. For example if I get startled really bad in the morning such as by an alarm clock, I tend to have more anxiety symptoms throughout most of the day. Needless to say, I don't use an alarm clock anymore. It is easy to assume that anxiety is all in your head, but if you have dysautonomia you are probably experiencing symptoms.
  13. Yes E Soskis, I am always running out of breath before I finish my sentences. It is so annoying! About the shoulder pain you mentioned: I have had unexplained pain in my right shoulder of an on for years. It is like a pinching feeling. It usually goes away within a few hours. Does this sound like what you are talking about?
  14. I have a lot of short of breath issues but the sudden ones are the strangest. Whenever I accidentally hold my breath for just a second or two (like when I am standing up from sitting, rolling over in bed, etc.) I get this severe feeling of breathlessness, like I've been holding my breath for a really long time and I have to take several very deep breaths to regain my normal breathing. It doesn't make sense to me because I feel like I need to catch my breath when I shouldn't. I would be interested to hear ideas about where this is coming from and why.
  15. Would love to hear more ideas for treating this. I tried Paxil and it turned me into a very sleepy zombie.
  16. I just bought a recumbant exersize bike a few weeks ago and I am dissappointed to find that walking and using the bike are equally difficult for me. I really thought the bike would be easier but my hr shoots up within a minute of riding and I am out of breath and unable to continue after about 3 or 4. And this is on the easiest setting, pedaling slowly. I think I still prefer the bike to walking though because I feel that it is a slightly better workout for my legs in the amount of time I can walk, which is only a few minutes as well. Unfotunately I can't tell you what my docs think because they always blow me off when I bring up exersize. My primary says to ask my cardio and my cardio says to just do what I can. I think they are afraid they will be liable if I push too hard and something bad happens. I am only 32 and was fairly active 3 years ago, before I got sick, so being unable to workout for more than a couple of minutes a day is incredibly frustrating. I am going to keep at it though, for the sake of strengthening my legs, or as my cardio calls them, my second hearbeat.
  17. Standing in lines and not getting enough sleep are my top two things to avoid at all costs. If I don't sleep I am so sick the next day that I have no choice but to stay in bed. I get really nauseaus and dizzy if when I move around, I feel wired and tired and the same time. I try to take naps but once I've stayed up too long the insomnia kicks in full force. I used to have insomnia really bad and every day was like this, but I have got that mostly under control with meds. I also get the eye thing you described when I am tired or feeling bad for some other reason. One time I got so sick I had to go to the hospital and right before my eyes were twitching back in forth rapidly I couldn't closed my eyelids properly. It was pretty scary. Other times I feel like I can't keep focus on something, like my eyes just drop off the item I am looking at and bounce a round a bit before I can focus again. I feel for you because not sleeping with dysautonomia is awful. The only advice I can offer is lay around, avoid screens (tv, computer, iphone, etc.), maybe do some reading, and if you are able to nap a little, do it, it will help. Fortunately for me, I have this wierd thing where I start to sneeze if I forget to take my evening meds (because my Claritin wears off), and it serves as like an alarm. Without that sneeze, I would forget all the time lol. If you think you might forget your meds again you might want to think about getting a wristwatch with an alarm or something.
  18. I didn't get the flu shot because I had the same concern...then I got the flu. POTS and flu do not go well together, it was awful. I can't say whether the shot will exasperate symptoms, but I wish I had taken that risk.
  19. These are very typical dysautonomia symptoms. I don't know if physical activity can make dysautonomia worse, but it is typical for the symptoms to persist for up to a few days, especially after a day like you described. I have to use a wheelchair when I shop for more than 5 or 10 minutes. I keep one in my trunk, but I have found that most stores have wheelchairs or scooters for customer use, which is a bonus because pulling my wheelchair out of the trunk is kind of a pain. I would advise anyone with dysautonomia to try using a wheelchair when shopping or doing anything that requires a lot of walking or standing. Also, if you have difficulty with flourescent lighting, such as in wal-mart, sunglasses help. There are certain colors of sunglasses that work best against flourescents, but I am not sure what they are.
  20. I also had chronic Urinary Tract Infections around that time. May have been related, but I'm not sure. Worth looking in to.
  21. I experienced something very similar after I got really sick. My sex drive increased dramatically and I had a constant tingling feeling down there. This lasted about a year and has since cleared up, but now my drive is very low.
  22. Yeah, I have trouble with some movies too. I went to see The Great Gatsby at the theater when it came out and I almost left because it was so loud and there was so much commotion, especially at the beginning. It made me really sick.
  23. I have thought and thought and thought about the cause of my illness and I cannot think of anything that changed in my life when I got sick over 2 years ago except that I had recently switched from regular soda to diet soda and Crystal Light. I keep hearing about the negative health affects of artificial sweeteners (particularly aspartame) and I have to wonder if this could be the cause for me. Any ideas?
  24. Thanks for chiming in guys. It is good to hear I am not the only one with this problem, though I still get made fun of by hubby for getting nauseous over a video game lol. I have been thinking about getting the new World of Warcraft expansion and starting that up again, but I have been avoiding it after the CoD Ghosts debacle. It sounds like different games have different effects so I think I will try to get a free trial and try it out first. I haven't played in over a year. Fin600, I hadn't thought about 1st person being an issue, but that makes sense. I got sick just watching my husband play Bioshock Infinite a few weeks ago. I don't want to give them up, but maybe if I just try to not to play more than an hour at a time... I guess that means renting is out. This illness is so stupid. So Fin600, PS4 or Xbox One?
  25. I rented the new Call of Duty and played it while lying in my bed for about 3 hours yesterday. My screen sensitivity had not been too bad lately so I thought I would be fine, but when I finished playing I was a wreck. I had all these visual disturbances (like a bunch of bright blurry spots). I also had ringing in my ears, nausea, dizziness, and headache. It lasted pretty much the rest of the night. Has anyone else here experienced this? I have always had trouble with getting nauseous during the really shaky video games, but this was ridiculous.
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