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Everything posted by Derek1987

  1. 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 problem. 130s/40s/50s. When I took my blood pressure after washing the dishes just now it seems like my heart beat is irregular. A heart picture shows on the screen for every beat. It was going 1000mph then stop and beat slow a couple of times. Back to 1000mph and do it again. I don't know I'm pretty discouraged. We plan on moving soon. I don't know how I'm gonna do it. The clinic in Nashville everyone keeps mentioning is probably what I'm gonna have to do. I can't keep living like this. I have too much to do.
  2. 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.
  3. 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.
  4. 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.
  5. 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 sickness I didn't even realize I had. We are both in our 30s on senior citizen status.
  6. My psychiatrist looked at my results from my adrenaline test and consulted with his neurologist buddies and said I'm done. He told my wife to call a lawyer he knew to start for government disability right there during the office visit. He used words like dangerous, no balance in the body, this isn't just a mind thing. Mind you, I had sat in the lobby for an hour and a half and started the fainting process. I was going outside to lay in the car and he called me back. Luckily I didn't faint. My hands were sweating the whole time. It seems like I can't do much of anything but be bed ridden. If I go out somewhere this happens. I had my medicine that's supposed to reverse the fainting but I had nothing to drink. I guess I need to start carrying a bottle of water anywhere I go. He also mentioned it being a hereditary disease. My dad's hands shake and he takes a beta blocker for a high heart rate. He also drinks daily, smokes, and not sure if he does drugs anymore. My psychiatrist was explaining how the disease can progress and be worse in the next generation. So I think my dad has the same disease but a milder form. I think he's been copping with it with drugs and alcohol etc. My hands were always shaking all the way back to my childhood. So I probably have had this forever. Now it's just getting worse. Bad news. But I can use it for good.
  7. I've gained like 10 pounds since being out of work in September. Most of the time I feel like garbage and don't feel like doing anything. But I want to still try and be healthy. I'm not sure if I can. I'm sure laying down a lot doesn't help circulation either. Can a vibrating massage chair or something improve circulation? Any tips on this stuff?
  8. I see my cardiologist later this month. I'll see what he says before I buy. Thanks for the tips my friend.
  9. Thanks for the reply. I'm checking out this website. I see they have different compression levels. Is there a certain compression level people with our condition should be looking at?
  10. My specialist told my to buy some compression socks. Any recommendations?
  11. Funny you say...I check my to see if my heart is still beating sometimes. I think it's out of paranoia because my heart doesn't act right. I feel a huge increase in beating just from moving to a different position in bed. Plus all of the palpitations. I basically worry I'm gonna die everyday. I start my new medicine regimen today so we will see how that goes.
  12. So let's say I wake up at 9am tomorrow to start my 24 hour collection. I understand my first urine, I don't collect it in the jug. I go in the toilet like normal. The urine after that I start to collect for the next 24 hours. Let's say I wake up at 8am the next day. Do I urinate in the jug with my first urine of the day?
  13. No food allergies. I believe they are non-stick. Perhaps it is in the coating. I mentioned it to my autonomic specialist yesterday and she pretty much confirmed that's a normal reaction for people with our condition. Maybe not everyone reacts but some do. Thanks for the replies everyone.
  14. My favorite place to be is my dark quiet bedroom. I have the windows blacked out. Sounds of conversation or tv seems to get my adrenaline going sometimes. I'm always telling my wife to turn the volume down on the tv or her phone. Light bothers me when I get my frequent headaches. I really need to lay off of the aspirin. I'm not sure if this is what you are referring to. When I go anywhere public now my hands are sweating. Adrenaline and anxiety flowing.
  15. Yes. I feel sick to my stomach as well. Insane. I see my autonomic specialist today for the 2nd time ever. Gonna bring this up. I'm really looking for a proper diagnosis. I've learned a lot from this forum. Thanks for the reply.
  16. Not because the food is nasty lol. Whenever she cooks, even if I'm in the back of the house, I feel flushed and ill to where I feel so bad I just want to sleep. I know I have a major heat intolerance problem. But I'm thinking this has to be related to my sense of smell as well? When I was working I remember not feeling right when they used the popcorn machine. But I was at least 20-30 feet away from the machine in a different room. I feel Ill and shaky when I'm around cooking. Can anybody else relate or offer an explanation?
  17. No. That was gonna be my 2nd option. I have a specialist in Memphis where I live. I'm seeing her Monday for the 2nd time. Traveling sounds like a mt Everest task. But I'll attempt to go eventually I'm sure. If this doesn't work out where I live...
  18. I live in TN. I'm 31. Been experiencing chronic fatigue since my early 20s. I'm guessing I've been dealing with this for a long time and my body cant keep up anymore. Now it's like since September 2018, I've been broken. My body is unpredictable now with a lot more symptoms. My wife use to be so mad at me for my tiredness. Any second I wasn't working I wanted sleep. I figure I'm headed towards SSDI. Unless I try some medicine and it works miracles for me. I'm sure they will try and get me a sit down job. My first black out was sitting down at Olive garden lol. I thought I was dying. I appreciate the sympathy. I'm definitely missing out on things I can't do anymore and things I planned to do. Sorry if I've repeated the same things over and over. I'm in so many threads and too tired to re-read everything lol.
  19. Why and what is that? Do my symptoms remind you of yourself?
  20. 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.
  21. 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?
  22. 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.
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