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Derek1987

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Everything posted by Derek1987

  1. Why and what is that? Do my symptoms remind you of yourself?
  2. To keep it short as possible. I'm still employed. Still on short term going into long term(Lord willing they approve me for LTD). They tried to deny my short term disability and said someone with my condition should be healed by now(there is no cure). The disability manager also said my specialist isn't qualified enough because she's a nurse practitioner. She has a doctorate in autonomic services or whatever. I also told them I was referred to this specialist by a cardiologist. I said okay if I have a doctor look at my records and cosign me being off work, will that satisfy you to get my approval? She said no. Long story short, I had my specialist write the disability company a note of what my disease is. I sent them her background information. I also threatened to get my attorney involved. I didn't hear anything from them until the last day to get valid evidence in their eyes of my disability. Shockingly they approved me. Now I'm filling out things for long term disability. It's been a stressful hassle.
  3. So this morning, I woke up and took 60MG of mestinon. I immediately got up and did the dishes and took out the trash. It took probably an hour. So I was on my feet for an hour. I took my blood pressure when I was done. It was 125/96 134BPM I layed down for about 10 minutes and took my blood pressure again. This time it was 137/85 77BPM I waited about 10 more minutes and took it again while still laying down. My BP was 151/82 69BPM I see my specialist on Monday and see what she says. I'm scared to take my blood pressure meds because of these Flucations and fainting episodes. Anyone else experience similar readings in similar situations?
  4. It's like a few pop up and diss appear. After the first time I fainted in Oct 2017, I started seeing stars on a regular basis along with hand tingling. They don't always happen at the same time. Maybe it was happening before my first faint and I just became hyper aware of my body after that? I don't know. It's just like seeing color specs come and go. It doesn't last long. When I was working I use to probably see them at least once a day or every other day. Now that I'm not working at the moment, I don't see them as often. I spend a lot of time resting. Not sure if I answered your question correctly.
  5. I'm sorry. I'm scared Everyday if it makes you feel better. I take Xanax to help with the major anxiety that has come with this. Anxiety itself seems to make my symptoms worse. I would go back and read this whole thread again but I'm soooo tired. My wife is sick so I went to the doctors with her and did a bit of driving today even though I'm not supposed to. Small tasks make me so tired. I took a 4 hour nap when I got home. I went out for about an hour the other day and I was so tired I had to sleep. Pathetic. When I went to the doctor with her last time, I almost had a fainting episode. It is scary. I can't go out to eat or do much of anything. When I do usually my body wants to faint. The fatigue is off the charts upon all of the other symptoms. Pretty much every moment I'm awake I'm suffering in some form. And the fainting part is the worst of it all. When I feel like I'm about to faint I immediately lay down. It's been working for me so far. The very first time I fainted I was at Olive garden. I blacked out. When I was coming to, I couldn't move or even speak. I was still sitting up. When I got into the ambulance and laying down of course, I remember the paramedic telling me my blood pressure was coming back up. By the time I got to the hospital and talked to the doctor it was like I regained all my strength but I was drained. I'm very new to this so I know the vets have a lot more knowledge than I do. But don't feel like you are alone. Are you seeing any specialists? Have you been diagnosed? What are they doing for you as far as treatment? What tests have they done?
  6. The wife and I are looking to move somewhere around Clinton, MS. That's outside of Jackson, MS. I was wondering if I could get the right medical treatment in that area.
  7. I get headaches all the time. I have high blood pressure when it wants to be high. Sometimes not. It's all over the place. I think some of them are tension headaches. I'm stressed because of my condition and work future.
  8. I get hot extremely easy now to where I start shaking and feeling nauseated. Sometimes I wake out of my sleep with a rush of heat as If my face is near a flame and my forehead starts sweating. Then I'll turn my box fan on me. I have an a/c window unit on while heat is on coming through the vents. Just the feeling of hot air makes me sick. I remember driving in 30 degree weather and I couldn't turn the heat on. I wanted to but it makes me feel so bad. Right now I'm feeling ill because my wife is cooking in the kitchen and it's warm. The other night I was sitting in my car talking to my friend on the phone. I was battling with me wanting heat on and off. I had it on and after 20 mins of turning it on and off, I felt like I was going to faint. I got off the phone and went to my bed immediately. My body temp can go from hot to cold in an instant. Not as extreme as the original posters friend. But something definitely isn't right. And when you have a family of 4, and they are all female, they don't understand my struggle. They get cold easy. It's just difficult all around. Crappy disease.
  9. That's crazy. I'd probably have more fainting episodes but I'm glued to the bed because I feel worse if I'm not laying down. When you have your fainting episodes, do you pass completely out every time? I only went completely out once but have had several near fainting episodes or as if I'm going out but stay awake.
  10. How often do you get IV fluids? I was on my feet earlier doing the dishes for about 20 mins. I was okay until the final couple minutes. Shaky and flushed. I want to sleep to stop the suffering. It's been a few hours since. I did drink a Gatorade though.
  11. Reading these forums I see people mention getting IV fluids etc. Is there a drink out there that will also help? I bought some Gatorade but it doesn't seem to have many ingredients in it. Mostly sugar water.
  12. I've had like 4 or 5 in the past year. My only ones ever since I started fainting. So sounds like I need to stop.
  13. Apparently I looked like a ghost white corpse when I fainted at Olive garden. Ah the memories.
  14. If I take a bath to relax, I barely fill the tub. Like 1/10th. If i do more I don't feel well. Even heat from the vents kills me. Last night I went outside in the car to talk to my friend on the phone. I kept having to adjust the heat settings. My body is like your cold so I turn the temp up but it makes me feel bad. My friend put me on hold and then I felt the faint territory coming on. I hung up and got in the bed. I have a window unit in my bedroom I run while the house heat runs through the vents. Kills my utilities but I have no choice. Thankfully my wife doesn't have much of a problem with it. She likes to sleep cold. I'm dreading the summer coming up.
  15. What kind of test did they do? I did a 24 hour urine test/blood work and a CT scan on my adrenal glands. I don't know any of the results yet though. My hands tremble. Especially when I'm exposed to heat. Sometimes just for no reason. They actually have shaken my whole life it's just gotten worse. Or maybe that's marriage? Jk
  16. I'm telling you... Your dishes will always come out clean when you use this. I learned this from my mom. My dishes had spots and food particles in it without this stuff. If this doesn't work for you, well .... I don't know I'd be shocked.
  17. Yes I use that function as well. I was just saying a chatroom for conversation in real time if people wanted to. between groups. It was just an idea. If nobody sees the need for it, then that is fine as well.
  18. Yes just a slower form. I'm not saying get rid of the forum. Some people just might like to chat sometimes. 🤷‍♂️
  19. I think it would be cool to add a chatroom feature for informational purposes/support/friendly chat. Just an idea.
  20. My doctor wrote up restrictions for me. Initially the disability company claimed they had no restrictions form for my doctor to fill out. Now that my job has approved my absence, the disability company sent my doctor a restrictions form. The doctor wrote sitting or standing for extended periods of time will cause fainting. Also no bending or lifting because the potential to cause me to faint. The disability company STILL isn't accepting that. I received a letter in my email stating they received my restrictions and it's not enough to support my claim. They need restrictions and all doctor records from December first to present. Which isn't much because I'm pretty much waiting to see the autonomic dysfunction specialist. So I have another paycheck I won't be getting. That's 3 in a row and rent is coming up. I called them and asked why they need restrictions. They said they need the most up to date restrictions. I was like this is from Friday and covers me until I see my specialist on February 25th. Then he was like okay the restrictions should be good just to get them the doctor records. Which is basically a visit to my psychiatrist for my Xanax prescription refill. And I did take a CT scan on my adrenal glands. That's it. They are really trying to screw me. I have enough medical evidence already. I have creditors calling me. My policy for rent is if I don't have it by the 6th, they start the eviction process. And I don't need that on my record because I'm trying to buy a house this year. Wondering if I need to threaten them with legal action.
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