Darlene

i hate feeling this way. its the scariest symptom when u don't feel right. my daughter says she can tell when i am feeling funny. she says i have a blank stare and looked confused. i don't leave my house because of dysautonomia.

i feel funny quit a bit... like i m not getting enough blood flow to my brain. i hate this feeling. i feel like i have a brain disease. is there anything we can do about this symptom?

thanks for the info songcanary. i will be purchasing the book. my mom was dx with fibro too. we can both read.

i am always in pain, not sure if its related to autonomic dysfunction... had one Dr. tell me its fibromyalgia, but another dr. says there isn't such thing. not sure why a Dr. would diagnose you with something if it doesn't exist. anyway, my low back hurts, hips, shoulders/neck, hurts to walk on my feet sometimes. if my cat walks across me it feels like a knife stabbing. i get this burning sensation inside my body at times, and sometimes itching. i ve tried tons of medications for pain, nothing works.

i get diarrhea after eating pizza... is it the cheese or gluten or both? i also after get this after eating shrimp, the only thing i can think of why shrimp would cause belly pain and diarrhea is because its a histamine releasing food.

i have always wondered what caused my POTS too. was is from abruptly stopping an ssri l i had taken several years ago, the hepatitis b vaccine i received while working in health care, i was abused my an ex boyfriend, i hit a car head on and hit my head (have several lesions in my head, not sure from what), once i sprayed mosquito spray on me that was not meant to be put on your body, not on your body, i had a bacterial blood infection and was hospitalized for 7 days, i lived in a woods (did i get lyme), did i pick something up when traveling out of the country, i often wonder if there is a disease process going on dr.'s just havent picked up on yet. i know all these things r probably silly to think, but i wonder what caused me to become sick. also, my daughter had brought home mercury thermometers from school that i accidentally broke.

no, ss didnt send me there. i had gotten this call from out patient rehab... this girl said my family dr. ordered this test. i never told my dr. i was applying for ss, unless the lawyer sent them papers. chaos, i do have have pain, actually i have pain all over. i didnt apply for ss because of back pain, although it may help. i applied because of dysautonomia. i do not understand why i always hurt. if the cat walks across me, it feels like a knife stabbing me.

the dr. wants me to do a functional capacity eval. i have an appointment made for next tues. what can i expect? hope it doesnt make me sick.

when i try to get off of it, i get this burning sensation inside my body and feel like i am going to pass out. not sure if its trying to come off of it or i have another disease process going on.

its probably causes from some disease process going on.

i have auras without migraines. an aura does not last for hours, it's last about 20/30 minutes. auras come on all of a sudden, when this happens you will not be able to see. i go lay down til it passes. when i am having the aura i see zigzag lines (looks like lightning), and blind spots. i always freak out when this happens, because i always think what if my vision don't return to normal. i tried topamax, but that med just made me tired and stupid (i couldn't think clearly.

I applied for SSI in April, and had gotten my denial letter in June. I went to see a lawyer and he filed my appeal. I just received a letter from my lawyer saying they filed for a request for reconsideration and to contact his office as soon as I receive my notification of the decision in case social security does not send him a copy. The appeal says "The claimant disagrees with the determination made on his or her claim and requests reconsideration. The reasons are: I have been unable to work for a period in excess of one year due to my disability; therefore, I qualify for benefits under the Act." I could had wrote that myself. Is this all an appeal is suppose to say? It doesn't sound convincing enough to me to get approved. What was the benefit of me hiring an attorney? Also the day of my appointment I talked with Takacs. He said his niece had POTS, and how I had a very good case, etc. The letter they just sent me says ,"The claimant is represented by Vernos J Williams, who is an attorney." I called the attorneys office and this girl said they put Vernos J Williams on all the appeals because social security recognizes his name. She said that all the attorneys work together. I don't understand.

I applied for ssi a few months ago and was denied and am now currently working with a lawyer. I have gotten a few medical records, and decided to read them before giving them to my lawyer. Some records say my dysautonmia is fairly stable or it states i am doing well or i have mild dysautonomia. I think these records will go against me. I have never told my dr. that I was doing well, and what is mild autonomic dysfunction? I was diagnosed with dysautonomia in 2005. I was bed ridden up until the time of diagnosis. I was put on meds, and this did help...to where I could go back home and take care of myself (was staying with my mom for a few moths because i was severely incompasitated). But I am still pretty sick. I don't know how I could keep a job or work with my symptoms that vary day to day. if I had mild autonomic dysfunction, wouldn't I be able to work? How would the dr. know what I go through? He doesnt live with me. Will I not get approved for ssi because of the medical records?

what does facet disease look like on an mri? i had an mri done, and it shows herniated disc, but i wondered what the black shadows were arounf the joints in my lower back.

i have chronic nausea too. dizziness/lightheartedness. inability to sit or stand for then an hour. and chronic fatigue. and i don't know how to put this symptom into words really, but lots of times i feel really weird, like a lack of blood supply to my head.

what symptoms disable you?

3rd verse. do the potsie dance and don't fall down?

I have anxiety secondary to POTS. I take klonopin for this.

rich, my bp goes up to when i stand. why do you need an icd 9 code for disability? my lawyer didnt say anything about icd-9 codes today.

so icd-9 code 458 isnt's POTS? i was dx with POTS by dr.bashir in 2005. not sure why they call it POTS, my symptoms dont improve upon lying down. my symptoms are the same whether i am standing or sitting. would have made more sense to just diagnose me with dysautonomia. my nervous system doesnt work right. why? I don't know. grubb suspects mast cell. I get this burning sensation inside my body, not sure if its MCAS or Neuropathy.

i have told my dr. about the symptoms as u describe, they have done labs and say my sugar is ok. of course my sugar is going to be ok, i am not having an episode at the time they draw my blood. i bought a sugar monitor on my own, and test my blood when i am feeling anxious, and weird. my blood level will read between 60 and 70. if my sugar is over 70/72 i feel fine, but when it drops under that i have symptoms. my dr. told em there's nothing i can do, but watch my sugar and eat when its low. this is the same dr. that i complained about back pain for 10 years, and they wait til I am in extreme pain and cant walk before they do an mri.

I talked with a disability attorney this morning. I have never been to 1 before, and didn't know what to expect. My friend said he would ask lots of question. I went into his office, and handed him the paperwork he had sent me. He handed me some papers to sign, and while I was signing papers he read through the papers he had sent me in the mail to fill out and bring to him on the 1st day of my appointment. He says "you have POTS", my niece has that. I know all about it. You have a pretty good chance at winning your case". He didn't ask me 1 question. He explained a few things to me, then I went home. I wasn't there long at all. Out of all the lawyers I could had picked, I picked the 1 who actually knew about POTS. Actually my friend referred me to him. He said I should hear something in 3 to 4 months. He says if you don't get approved in 3 months, then you should at the hearing which will probably take a year.

the icd-9 code is 458

Has anyone gotten SSI based on POTS alone? i don't pass out, but i am pretty sick quite a bit. I filled out my application in May, and just received my denial letter. It says "We have determined that your condition is not severe enough to keep you from working. We considered the medical and other information, your age, education, training and work experience in determining how your condition affects your ability to work." My condition is not severe enough to keep me from working lol. Then why would I apply for SSI. Also, what does my age or education have to do with anything. Yes I do have a few degrees, but what matters if I worked at McDonald's all my life, or I was a Dr. If your sick, your sick. I meet with a disability Lawyer tomorrow, hopefully he can help me. I did read through some of my medical records from Dr. Blair Grubb. Sometimes he states I am severely incapacitated, and sometimes he states I have mild autonomic dysfunction. At the time of diagnosis, I had to go stay with my parents for a few month. I was so sick I was lucky to take a shower once a day. I did not eat (unless my mom made me), I was severely nauseated and vomiting, chronic diarrhea, sweating one minute, then cold (having chills the next), felt like I was going to pass out 24/7, dizzy, tachycardia, chronic fatigue, difficulty breathing, difficulty swallowing, difficulty holding my head up... then after POTS diagnosis and given lexapro and metoprolol; it helped, but not enough for me to hold a job. Will I not get SSI because he states at times mild autonomic dysfunction? (which is not true) If the Dr.'s and people who determine SSI benefits would come live with me, they would see just how sick I am. He has also stated I have denied being disable. I have never stated that to him. He has never asked. What the heck am I suppose to do.

can u get life insurance if u have a medical condition (dysautonomia)? if so, do you's no of anyone i can go through.