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Everything posted by Derek1987

  1. I've had this symptom for quite awhile but I wasn't sure if it's related to this disease. It happens more when im lying down on my Back. My head feels like it's floating in water and there's a gentle wave or something. Is this a common symptom? If so what is going on?
  2. I've been getting on @Pistol's nerves. Thanks for putting up with me. More from me to come lol.
  3. I was on mestinon for about 3 months. No positive effects. My specialist took me off and put me on carvedilol. Only slows my heart rate if I do nothing. It's helped my palpitations I feel like. I mean i still get them but thus far that's the only positive thing so far in my treatment of this disease. Pretty depressing so far. I can take a hint of caffeine here and there. Otherwise I'm shaking and feeling Ill. Funny because 10 years ago I'd throw down energy shots and feel amazing. I think I actually drank a bit of coffee and a 12 oz Coke when I made this thread. My wife had a shingles out
  4. Whenever i do a small tasks such as go to the doctor im overwhelmingly fatigued. Today I dropped my kid off to school. Dropped my 24 hour urine test off. I went and got gas. Picked up my kid from school and then went to the store. That's way more than I usually do. My wife is sick so I'm picking up some slack. I battled through the fight or flight feelings all day. As usual. The adrenaline surges and shaking etc. When I got home and sat down, this overwhelming fatigue hit me after about 5 minutes of sitting down. It's actually scaring me. It's not like I'm sleepy. It's like m
  5. I'm 31 now. I believe I've had symptoms at least since my early 20s. I started having heart palpitations then. I looked it up and it said there was nothing to be afraid of. This was back then. So I was like whatever. But I was so exhausted all the time. My heart rate was probably super high then as well. My heart rate skyrockets upon standing. Fast fwd to 30. I faint in olive garden. Fast fwd to 31 I have 2 fainting spells but I didn't black out this time within a week. After that I haven't been the same since. I get extremely Ill.my adrenaline is through the roof. So many symptoms
  6. Thanks guys for easing my mind in that regard.
  7. Well hopefully this bed ridden life doesn't cause blood clots. I take aspirin one to 3 times a week for headaches. I read aspirin keeps your blood less sticky for 7 days after consumption. I know taking that much aspirin isn't good for you either. What a mess. I was curious because my right calf muscle mysteriously gets really sore every few weeks. Always my right calf muscle. No swelling though.
  8. What symptoms did you have that helped you find out you have blood clots?
  9. I'm still waiting for my long term disability to be approved through my now ex employer. They called me today and asked for an extension. They are going to have a meeting with a nurse and vocational expert I think he said to determine if i can work. They already have the evidence they need to show I'm screwed up. Now I gotta wait up to 30 more days for a decision. I love how they work. When I was on short term disability they told me someone with my condition should be healed by now and that since my specialist is a nurse practitioner, she is not credible enough. I was referred to her by
  10. No doubt. My wife was approved for SSDI after 3 long years. She's had 2 hip replacements, ankalosking spondylitis, fibromyalgia, I think rhemutoid arthritis and many other issues. We are both in our 30s lol. She has a walker and everything. She had her first hip replacement when we were dating i believe. We also went skating with her kids aka my step kids while we were dating. Before her problems started obviously. Crazy how things can change in an instant.
  11. Thank you for looking into this for me. So far I do have POTS and NCS listed. I haven't had any seizures though. I need to do some more research on what can meet a listing if it's possible. I don't want it to drag out that long. Not only for financial reasons, but health reasons. Every time I go to a Dr appointment or something I'm battling the fainting. Unless I get called back quickly. I guess passing out in front of a judge would probably help my case but I don't feel like going through that torture. Instead of calling, I'll probably just do more research and ask questions like I'm doi
  12. My primary care doctor is clueless on all the stuff that's going on with me. She doesn't even want to sign disability paperwork for me. She claims the specialist should do that. Makes no sense to me. So I don't have an official diagnosis on why I have these issues. I have an appointment with a neurologist on may 3rd. I see my cardiologist April 22nd. Maybe they can look at my latest tests results from my autonomic dysfunction specialist and figure something out. My tilt table test shows 40/50 beats per minute increase in a standing position. They have detected Rocky mountain in me. My adrenal
  13. Can you give me an example of a condition that you put that social security deemed as a disability? I'm really lost now lol. I don't have an underlying condition found of why my body does those things listed. At least yet. I thought autonomic neuropathy dysfunction would be a condition.
  14. I'm so uninformed. I don't know how she would be paid. I asked her what if I win the first time, she said usually cases go to a law judge. She's expecting me to be denied at first it sounds like. I'm doing my application through the computer. And yes it's taking me extra time to fill it out because it requires energy and focus lol. I live in TN.
  15. My attorney told me to call her when I'm done applying. If I'm not mistaken they would probably rather you be denied. The more backpay, the more money for them. Idk.
  16. So I'm filling out the application(advised by doctors to do so) and I am at the part where it asks for medical conditions. I am going to post what I have so far. Screenshot in the link below. I know disability requires you to meet a listing in order to be considered disabled. I'm trying to do this right on the first go around so maybe I can be approved the first time instead of waiting 3 years like my wife. Honestly I can't financially wait that long. I need to get this right on the first shot if possible. I know it's unlikely to be approved for the first go around but maybe I will be. If you
  17. I'll pray for you brother. I seem to be getting worse with the adrenaline storms. I take xanax. It helps to a degree. The only time I'm not tortured is when I'm asleep and don't realize I'm alive. I'm still a newbie to this sickness on how to get well so I'm sure others will have better advice. Stay strong. You aren't alone.
  18. So far it seems like only alcohol and spicy food has given me problems as far as causing fainting issues(other than being up too long). I feel like crap everyday so I'm not sure if food is a cause. I basically feel the same every day. Adrenaline surges throughout the day/night. Blood pressure all over the place. Feel like throwing up a lot but haven't actually thrown up. Hands tingle when I'm up for any period of time. Upon many other issues. A miserable existence lol.
  19. Could the diltiazem possibly increase chances for fainting? When I drank a glass of wine at Olive garden, I blacked out right as I was finished eating. Another time I took a cayenne pepper pill and maybe an hour or so later I was in the ambulance. I didn't black out though. My body was trying to faint. Then I ate some peppers a couple months later and felt it coming on. Which I think these things dilate blood vessels. Correct me if I'm wrong.
  20. So before the beta blocker, as soon as I stood up my heart rate would jump up instantly. Now I guess it slowed the process down by 10 minutes. Maybe less I haven't tested it that way. But if I'm up for 45 mins or so, my heart rate and blood pressure are through the roof like I'm not even taking it. I got hot and felt like passing out was possible. I'm taking carvedilol 3.125 mg. If I'm laying down my heart rate is high 50s low 60s. Standing up its in the 90s. So I'm like great this is working. Yet my pressure is still mostly high. But if I do an activity on my feet it's back to the same ole pr
  21. I took a sleep apnea test after my last day at work. So probably October 2018 or somewhere. They said I didn't have it. Although I know I can't sleep on my back. I can't breathe on my back. But yeah they said I didn't have it. I've taken benadryl for years to sleep. Even though I I am exhausted, I still need something to make me sleep. I guess now I know why. The adrenaline problems.
  22. What is an AV block and what's the purpose? I'm suffering from an adrenaline storm now. It's a daily thing now. The suffering is real.
  23. I take Xanax to help me sleep(or just general anxiety during the day) but it never gives me a deep good sleep. And that's 2mg. I woke up after 4 hours even though I'm exhausted. I went to 3 different places today and I feel I'll, exhausted, and major hand tingling for some reason. How do you manage to get good sleep? I'm so tired and my body won't calm down enough to sleep.
  24. Yes I see what you mean. There's no way I can do anything at the moment. I almost fainted at my appointment yesterday lol. Then I went to a couple places today. Not much walking just sitting. My hands are tingling pretty bad right now. Might be signs of fainting coming on. I'm laying down alone trying to calm myself. This is hard. I hope the disability process goes quickly as possible. My wife had to wait 3 years for hers. She has bone/nerve problems. And now that she's gotten approved, my body finally just broke down at the right time I guess lol. I pushed through sic
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