Derek1987

I wonder why you need reviews for this condition. According to the internet and my specialist, there is no cure. It's been a long road for my wife and I. She finally was approved and we are waiting on the first check. It's been 3 weeks. Haven't received an award letter or anything yet. Drowning in debt. And my long term disability through my job is about to cut my pay in half. Sorry went off subject a bit there.

If I was up for 45 minutes I'm pretty sure I would have fainted. I feel shortness of breath when standing for a couple minutes. I wonder why she didn't give me the full test. My wife said when I was in the standing position my hands were red and my face. and I would feel like I was having a mini hot flash or something. Not anywhere near what it was the first time I fainted. Not sure if that means anything. Tomorrow I'm starting my medicine the autonomic dysfunction specialist gave me. I tried it twice but it raised my blood pressure too high. I got some proper blood pressure meds from the doctor today to counter act that. So we will see what happens tomorrow.

Does your heart skip beats?

Thanks for your reply. My autonomic dysfunction specialist doesn't seem to think it's pots from the tilt table test. But my tilt table test was only like 5 mins and I've read on the internet where they take ones a lot longer and even give medicine or something. The tilt table did show my heart rate was dramatically different depending on my position. But my blood pressure was high the whole time. Yesterday when I got to the doctor my blood pressure was 115/85 sitting down. When I nearly hit the ground in Walgreens later that day, as soon as I got home I took my blood pressure and it was 150 something over 109 standing up. Laying down it dropped a few points. My heart rate dropped by about 50 beats. My blood pressure is all over the place and is never consistent. I guess time will tell on what's going on. Thanks again for your reply.

Thanks you so much for your reply and story. It feels better to know I'm not alone. So now you are on SSDI ? Can you tell me how you were approved? My wife is disabled. It took 3 years and lawyer and hearing to get hers approved. She's had hip replacements, ankalosking spondylitis, fibromyalgia, osteroperosis, osteoarthritis. She's also in her 30s. She was approved 3 weeks ago. My body lasted just long enough for her to get disability . Now I feel like I might be next. If I were to go back to work again, I'd end up on the ground again. I'm wondering if I should go ahead and apply for it. What were you officially diagnosed with that the social security office approved you? Did you get denied? Hire a lawyer? I mean maybe I will get better. But I might not and SSDI is such a long process. Once again, I really appreciate your response and advice and experiences.

I'm going to make this short as possible. My name is Derek. This all started Oct 2017. I was out to eat with my mom and wife. I'm 31. I was leaning forward to eat then I leaned back when I was done. Suddenly I started getting light headed. I told my family. Then I got really hot to where I started sweating and eventually I couldn't see, hear, or move. My wife said she could feel the heat radiating off of my head and I turned white. The ambulance was called. I started coming out of it but I was so weak I couldn't move. I couldn't talk. When I was in the ambulance the paramedic let me know my blood pressure was coming back up. The doctor at the hospital shrugged it off and said sometimes people just faint. This incident caused me to have extreme anxiety and worry if it would happen again. I eventually regained my strength. Fast forward to September 2018. It was a Friday night and I was laying in bed. The fainting feeling came on me out of nowhere. I panicked and stood up but it made it worse. I layed down. I didn't pass out but I was having tingling in my arms and hands just like the first time I fainted. I went to the hospital. Did the same exact tests. Everything came out okay. I regain strength and I go home because the doctor shrugged it off again. It was a different doctor. 5 days later at work. I'm walking and I have a weird sensation in my stomach and all of a sudden my knees buckled. The tingling returned and I'm on the ground at work. Again I didn't pass out. I go to the hospital. They kept me over night because of the history. They put a heart monitor on me overnight and did an ultrasound. They said everything was good and let me go the next day and I was stressing to them something isn't right and I didn't want to go. They said there's nothing they can do for me. I see my primary care doctor and she sends me to a cardiologist. He takes an EKG and sees my heart is off rhythm yet I took like 8 at all of my hospital trips and were fine supposedly. I wore a heart monitor for a month. They noticed my heart rate goes really high when I stand and is normal when I lay down. Sta ding up my heart rate is around 130. I've had it as high as 156. My heart rate laying down is always in the 70s range. My blood pressure also changes 20 to 30 points depending on if I'm laying or standing. I saw a neurologist and did a test to make sure I wasn't having seizure activity in my brain. It checks out fine. Eventually I'm referred to an autonomic dysfunction specialist. They take Blood and I did a 24 hour urine test. I have a MRI on my brain this week as well. The specialist has the disease herself and had to have brain surgery to fix herself. She was bed ridden for a year. Anyways, my blood work revealed I was exposed to a tick disease. She said it wasn't Lyme but she didn't specify which one. She said it caused damage to my nervous system but the disease is no longer active. After the 3rd fainting incident I haven't recovered my strength. I can't do much. I'm pretty much bed ridden. I almost had a fainting spell today. I went to the doctor and went into Walgreens. Out of nowhere I got that feeling in my stomach and my legs tried to buckle. I somehow stayed up and went to pay. The lady in front of me checking out was paying in change and taking forever. I made it home and layed down. The autonomic dysfunction specialist has me on some medicine that's supposed to reverse damage to my nervous system. it's called pyridostigmine br. It also is supposed to slow my heart down. She also gave me a flyer thing about autonomic dysfunction which said there isn't a cure. So her statement and flyer kind of contradict each other. I'm afraid I might be disabled now. I've been on short term disability through my jobs insurance but is now going to kick into long term disability with half of my pay. My FMLA is exhausted so it's up to my job wether or not to keep me. I'm not worried about it because there's absolutely nothing I can do. .my job consists of me standing up all day long. There's no way I can do it. I feel weak after taking the trash out and lay down. God will get me through things financially somehow. I just want to be able to do normal things and not live in the bed the rest of my life. And it's scary thinking all of the time, will I faint? Anyways that's alot of my story. If you can relate or have any advice for me, please comment. Or if you have any knowledge you would like to share please do so. Sorry for the long post. Thanks.