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Everything posted by Derek1987

  1. Before i completely broke down, i remember playing sports games on my xbox. Every time i had a super close game, i felt really bad and had to quit. I was angry because i was just like i want to enjoy myself. I forced myself to sleep to escape the suffering. At the time i thought it had something to do with my blood pressure. But in the back of my head, i remembered i had fainted once already at that particular time and i didnt accept that as normal. Im glad im through with those stages of whats wrong with me? Is there something wrong with me? I remember this feeling hitting me again when i was putting a computer desk together. I had to stop and tell the wife i need the room alone to escape. Then recently i watched 2 action movies back to back. That really screwed me up. I was getting these jump scare feelings and what felt like some shock or punch to the gut. This time i had xanax. Took my max dose and requested to be left alone to sleep it off. Trash disease.
  2. Did he finally get it? My wife told me a story of someone she knew who had a serious illness. By the time they got approved and got the approval letter, the person was dead. Like i said in my previous post, im calling my lawyer tomorrow. Got the denial letter in the mail today.
  3. Contacting tomorrow morning. My wife was gone all day today. Officially got the letter in the mail today. I need my wife around for the phone conversation because i have trouble remembering things.
  4. Insane. This probably makes people homeless. The ones who are truly sick. Im glad you finally got what was already yours and you were able to maintain yourself.
  5. I dont have the letter yet but i checked the status on ssa.gov. a decision was made yesterday. I already have a lawyer and im going to call him tomorrow when my wife is here because my memory is crap. Dont you have to be denied twice before it reaches the hearing level? Anyways just giving an update. What an annoyance. They had all the evidence they needed. What a corrupt world. Appeal time.
  6. Feel free to complain as much as you want lol. It helps to vent i think. Im receiving long term disability through my previous employers benefits. I filed my first application for SSDI in april i think. Even after all the evidence, including written letters from doctors saying there is no cure, i am permanently disabled, social security still sent me out for a mental/anxiety evaluation. I was extremely nervous because i know there is a lot of people who fake being sick and i felt like i was going to have to sell myself. But the evaluation went really well. He said social security is crazy and i obviously should be approved. He even snuck me a lawyers contact info. I already have one though. I didnt tell him that. Im going for approval on my first try though. I waited several months before i applied so i could have enough evidence to have a strong case. Although the first few months of being critically ill, i was trying to figure out what was wrong so i could be fixed and go back to work. Nothing has changed for me healthwise and my employer had no choice but to let me go.
  7. I dont even know what an alpha blocker is. What do they do? I have to take xanax in order to sleep. I had been taking benadryl for years in order to sleep. And that P word you mentioned, i had to google it. I dont have any tumors on my adrenal glands. Got that ruled out.
  8. Not that ive noticed. They just added mestinon to the mix. Ive been on mestinon by itself and did nothing for the adrenaline. So now they are trying the combination of mestinon and coreg. They said the beta blocker isnt doing enough and are adding the mestinon to help my body " put on the brakes". I dont live a normal life anymore. The best place for me to be is in bed and the lights out and in the cold. I had some visitors come over the other day for maybe an hour and a half. I sat up maybe 20 mins and layed on the couch the rest of the time. I was battling fight or flight during the visit but tried to be normal. All the noise of conversation, and trying to focus on conversation myself, it really took a toll. After they left, a tidal wave of fatigue hit me and i couldnt stay awake. Slept for about 3 hours and woke up feeling like crap. Lol.
  9. I suffer through some sort of panic every single day. Sometimes its so bad i have to take my max dose of xanax and ask to be left alone in our bedroom and sleep it off. I just made my wife some soup from a can. When i got it out of the microwave, my hands were shaking so bad, i spilled 20 percent of it on the oven. Face palm. I deal with fight or flight daily so i understand. Its torture.
  10. My first neurologist said i was having fainting issues due to anxiety. Wrongggg. Have you ever done a poor mans tilt table test? Something you can do at home with a blood pressure monitor?
  11. Sounds like a faint spell. My arms and hands tingle every time ive had a faint or near faint spell. It scares me so much. But theres so many people that go through it with this disease. The body is just trying to get blood and oxygen to your brain. Its still scary so i know how you feel.
  12. So since being stuck in bed officially a year now, i have finally gotten motivated to eat healthier by restricting my calorie and sugar and carbs intake. Nothing extreme but i know i need to change my eating habits because ive gained 35-40 pounds! So im cutting back and watching numbers. With that being said, i dont want to miss out on any nutrients. Do you guys have any multivitamin suggestions? Looking for the gummy kind please. Thanks for any suggestions.
  13. Sometimes i just have a weird feeling in my gut. Other times its like a jump scare feeling from watching a scary movie but 2 or 3 times worse and is set off by nothing(actually its set off by too much stimulation) and the feeling goes from my heart to my stomach. Its taken me to the floor before. Its like getting punched in the stomach or something. I cant put it into words but yes it causes extreme anxiety and usually my heart rate will go up. This time my heart rate is the slowest ive ever seen it. I take coreg 6.25mg, xanax, midodrine, and they also want me on mestinon but they didnt call it in on my last appointment. Ive been on it before and it did indeed slow my heart rate but i wasnt on coreg. Coreg has definitely helped slow my heart rate down. I dont really want to add mestinon into the mix especially since my heart rate is already decent when laying down. I cant stand for long or those adrenaline attacks get me or chronic fatigue where i cant hold my eyes open. I know their goal is to get me on my feet and operating like a normal person but its not working out so far. Eventually im going to vanderbilt. No appointment date yet. Waiting on that.
  14. Ive been helping my step daughter with school work for a few hours. Shes doing home school this year through a private school. She tests on campus. I got that shock feeling in my stomach thats lead to my body trying to faint in the past. I was laying in bed helping her. My wife was well. And i guess after all the talking, focusing, bright light in room, my body couldnt take it anymore. I took a midodrine and left the room to be in quiet. My pupils were very dialted. I had a couple more "shocks" to the stomach. My BP is normal but my heart rate is in the 50s. How can i have adrenaline overload with a slow heart rate? I dont ever have a heart rate in the 50s. Especially the low 50s. Thoughts? Edit: something else i noticed. When my adrenaline is in overload, any medicine i take seems to be more potent. If i take xanax during huge adrenaline flare, its faster and more potent. It only took like 15 mins before i felt the crawling skin on my scalp with the midodrine. Very fast.
  15. My moms still in denial. She thinks omega 3s will fix me with exercise. Lol. This is after i have explained the disease and how it works multiple times. I used to shower twice a day. Now its a struggle to shower daily. You arent alone in this!
  16. I will look with those terms and see what i can find.
  17. I dont have a dedicated person that cuts my hair. They are different every time. No the last question.
  18. Haircuts now for me is a big deal. I have been going during the week when nobody is there so i can get in and out. The heat is really messing with me. Does any sort of in home haircut service exist? Im male obviously. I dont know if this matters. I figured asking on here would be quicker than google searching.
  19. Yeah i see an autonomic specialist and im still the same. This is her bio if you are interested. https://semmes-murphey.2dimes.com/debbie-turner I was offered to go to vanderbilt initially but in my ignorance i was like well if i have a specialist here in my city, ill just see her. But now im officially iust waiting to go to vanderbilt after my recent referral. If i get denied, thats when i know my attorney will really start to help me. Like i said, i did explain i have autonomic dysfunction and it causes this, this and this. Social security might of zoned in on anxiety because they feel my autonomic dysfunction doesnt meet the criteria of disability. Who knows but thats where my attorney can help me. Either way, ill win eventually unless i get better. I hope i can talk to my examiner and be like my anxiety isnt just mental, its physical. My test results prove it. And describe what autonomic dysfunction is. If i can explain my condition, that will help me out. If not, idk. We will see what happens.
  20. I put what conditions i suffer with. POTS was at the top. Anxiety was in there. On the back of the questionaire i explained that my POTS is a cause of major anxiety. I explained how the disease works. I told them about the bloodflow to the brain problems, syncope, and all of the other issues its caused me including the anxiety. I included it all together but under the umbrella of autonomic dysfunction. My wife was sent for a mental evaulation even though hers was physical pain from various conditions she has. They tried to say her physical pain was from depression. They didnt do an anxiety exam however. Im going to be completely honest. And do my best. I just wanted any advice i could get because of how crooked the system is. 90 percent of doctors ive seen either dont care or doubt you. I did hire an attorney but she wont get anything if i win the first try so i know she isnt interested in helping me right now so i havent even contacted her. She told me to fill out the application and come in to put her as my attorney on paper when i turned it in. Then her assistant was talking about winning at the hearing. And i was like i need to be approved before that. So im doing everything i can on my own to be approved.
  21. So I have a SSDI case pending. First application. After they got all my doctor records, they are saying that's not enough to approve my claim. They are sending me out for a mental and anxiety evaluation. I have hyper pots and elevated adrenaline in my body. So it seems like they don't care about the fainting issues, heart palpitations and all of the other suffering that goes on with this disease. Looks like they are focusing on the anxiety side of things. My psychiatrist even has a letter in my doctor records mentioning the sympathetic and parasympathetic nervous system dysfunction causing high anxiety, rapid heart rate, fainting etc and says I am permanently disabled. Has anyone ever gone through this? How can I prove to them my anxiety is horrible. I mean it really is. I had an autonomic nervous system test done showing my adrenaline is way above normal. A normal person is a 1. Mine was an 11. I wonder if I can take those records and explain to him what it means. I know a regular doctor won't understand the graph. Only my cardiologist and neurologist understood it. On the letter it states " the medical evaluator may not do some of the tests we ordered or that other tests are needed". Wondering what kind of tests they can do to check my anxiety. I know I am disabled now. They need to know it. I know that the doctor is assuming I am not from the jump. I mean a lot of people fake disability and it ruins it for others. My wife for example. The doctor said she was faking and trying to use the system. It took her 3 years and a hearing to be approved. I don't have that kind of time. Long term disability will only pay me up to 24 months. I wouldn't be able to hold a job in my current condition. All advice and wisdom will be appreciated. Thank you!
  22. I get this like every freaking day. Good to know I'm not alone in that.
  23. I've been stuck in bed since September 2018. Yesterday I had a horrible day and I didn't even do anything. Today I felt better but my body is still screwed up. I put some air in my tire for my wife's car. I have a mini pump I got from Amazon. It took me 10 mins. I even sat down in the air while the tire filled up. My heart rate jumped up 30-40 beats and my BP shot up. Lower number was 103. Laying down brings that number into the high 70s low 80s. I feel like I'll never be the same. I'm going to Vanderbilt eventually. Maybe they can do something. We are trying to move soon(hopefully) and I feel so guilty I won't be able to do much at all. I'll hire movers. But packing will not be possible. I'll try and do some here and there. Still early on in my journey to a recovered state hopefully.
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