khaarina

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.

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.

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.

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.

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.

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?

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.

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.

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.

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.

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!

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.

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?

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.

Would love to hear more ideas for treating this. I tried Paxil and it turned me into a very sleepy zombie.