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Derek1987

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Everything posted by Derek1987

  1. This happened to me in October 2017. I was out to eat at Olive garden. I was leaned fwd eating and I leaned back when I was done. I got lightheaded which didn't alarm me at first because it's happened before, but it progressed really quickly far more than I ever experienced. I got really hot and started sweating. I told my family something is wrong . Then my vision and hearing and ability to move went away. The scariest thing was, I was aware. I was so weak I couldn't move or speak. When I was in the ambulance, the paramedic told me my blood pressure is coming back up. It was so hard to speak even then. I developed serious PTSD after. The doctor shrugged it off. It took 3 fainting spells to get doctors attention. Although it the 2nd and 3rd weren't as bad. I could still move but I felt the fainting feeling and tingling in my hands and arms just like the very first faint. The other day I felt like I was going to faint at Walgreens. I'm usually in bed all day because of my symptoms. But that day my wife drove me to the doctors and we had to do a couple more errands. So I was upright for about 4 hours. I think that's what caused episode at Walgreens. Otherwise I don't feel lightheaded as a symptom. It just hits me. Usually I feel nauseated all day. A weird feeling in my stomach. Hot flashes. Weak. Out of breath by simple tasks like taking out the trash. I'm 31 and my job was walking for 8 plus hours so definitely not the norm. Hot flashes might be the new meds I'm on though idk. The only way I've been avoiding it is laying down like an elderly person almost all day. Sigh
  2. No they have not. But I let my specialist know about it. The next time I see her, I will let her know about it again. I've only seen her once. So I'm just getting started with figuring things out.
  3. Seems like it's getting worse. Went to sleep nauseated and woke up immediately nauseated. I always have some weird feeling in my stomach too. I really started noticing it when I had my 3rd fainting spell that happened at work. It's a weird feeling that goes in a line straight down my stomach.
  4. Hopefully they have a better experience than I did with the neurologist. He made me do simple tests like walk in a straight line. Talked to me for 2 mins and left. His doctor records said I was fainting probably due to anxiety. It was a joke.
  5. I can't really give you any insight but my blood pressure is getting too low for my liking. But I'll get spikes that go way high. I'm pretty lost. I drank some coffee to boost my pressure up. Although I can't drink too much caffeine anymore or I'll feel really sick. I'm 31 now and relied on caffeine to help me through work through my 20s. Like 5 hour energy etc. My gf at the time was always mad at me for being tired all the time. So I guess I've been dealing with this longer than I thought. I'm just now having more major symptoms. I just started taking mestinon to slow the heart down which elevated my pressure to where I felt sick. So I was put on Lisinopril to counteract that. It seems the Lisinopril is cancelling out the mestinon because my heart rate is back to being in the 130 plus area when I'm standing up. When I took mestinon alone, it would go to about 110 or so. And my blood pressure is low now. So it seems like only the blood pressure medicine is working and I don't want it to go too low because I already have fainting episodes. So you are taking meds to raise your blood pressure and it's not working?
  6. I'm assuming it will come out fine since they already found out I was exposed to ticks. Or maybe that would cause an anomaly? My short term disability at my job is waiting on the results of the MRI to determine if I'm eligible for long term disability. I don't know why they are waiting on that as the specialist said herself I can't return to work until she sees how I respond to treatment. I even sent the disability company a statement from her saying I couldn't return until I see her again and see how I'm responding to treatment. It's like they are looking for any reason to cut you off . I hope I don't have to appeal it. I'm legit sick. Heck, 3 days ago I almost had a fainting episode in Walgreens. That would of been embarrassing. So if they force me back to work, I guess I'll be back on the ground like the last time I was at work lol.
  7. Anyone else have issues because something was wrong with their brain? This was my first MRI ever and I don't even really know what they are looking for or what they can find.
  8. I'm pretty confused today. I took the pyridostigmine this morning. Initially, that medicine shot my blood pressure into 160s over 110s.But today I didn't take my Lisinopril. I was going to wait and make sure my blood pressure went up. It didn't. Laying down I was 120/70 for blood pressure with 60 BPM. I kept checking it every few minutes and it stayed in that range so I haven't taken the Lisinopril. I just took a shower. My blood pressure rose 120/93 with 150 BPM. Im laying down now to get my heart rate down. As usual... my blood pressure is never stable. Last night I woke up in the middle of the night with hot flashes. This is a first. I also felt really nauseated and weak yesterday. It seems like the pyridostigmine might of increased my symptoms although it did slow my heart rate down. I'm lost.
  9. Well I've had anxiety as long as I can remember. After I fainted the first time, it got really bad, and that's because I was scared I was going to faint again. So more like PTSD. I'm not even sure if I'm diagnosed with POTS officially. The specialist just talks about the nervous system. I'll probably get an official diagnosis after I do all of her tests. I have a brain MRI tomorrow. She did say I don't need compression socks and she thinks my adrenaline goes nonstop. But at the same time she showed me an illustration of a person with autonomic dysfunction and how blood flow reaches the brain less and less the longer they stand up. So I'm confused. Sorry if I've repeated myself to you. I forget who I answer to. I have bad memory loss problems as well. It was a pain to get in the right direction. The hospital didn't think anything was wrong with me on my 3 ambulance rides. The neurologist said I was passing out probably due to anxiety. He was a joke. I only talked to him for like 2 minutes and he left . Finally my cardiologist sent me to a heart doctor who deals with electrical signals in the heart. He came in and was just like I think you have autonomic dysfunction so I'm going to refer you to someone who specializes in it . Another problem I'm having is my insurance won't pay for a heart monitor implant because I'm under 40. I was denied twice. I'm going to see if my autonomic dysfunction specialist can do anything for me on that. I've had several palpitations today. And skipped heart beats or out of rhythm. My head is killing me. I'm getting more headaches. Could be stress. But i also feel nauseated everyday. Not major but it's not normal. I just feel like a sick person.
  10. Today I just started mestinon and Lisinopril. The Lisinopril to lower my Blood pressure. My heart rate laying down between 59-64 BPM. Without mestinon, it's usually in the 70s. I actually started taking mestinon a couple of weeks ago and it was making my blood pressure go way too high so I had to wait to see my primary care doctor to get me back on my old blood pressure meds. So today is the first day I've had both meds. My heart rate is lower and my blood pressure has gone from good to high. It fluctuates a lot. But it hasn't been as high as it was when I took mestinon alone. My concern is, does this medicine help blood get to the brain? I'm reading through these forums and I don't understand how some of you are able to work. My disability through my job is under review to go into long term. There's no way I could work now.
  11. I don't know enough about this disease as I'm just now getting treated. I take xanax for anxiety. This disease has me so worried I take Xanax for panic attacks. I already had anxiety before but wasn't taking anything for it. It took me 3 different psychiatrists to actually prescribe me a benzo. They tried celexa, Zoloft, and a few others which did absolutely nothing for my anxiety. I needed a benzo.
  12. I did a 24 hour urine test. I'm not sure if that's the same test you are referring to. I've never heard of hyperPOTS. The very first time I fainted I know my blood pressure dropped because it was still low when the paramedics got there. I was sitting upright.it was the worst of the 3. Going black and going deaf and unable to move. I was coming out of it when the paramedics got there but I was so weak and could barley move. In the ambulance laying down is when the paramedic said my blood pressure is coming back up. The next 2 fainting spells, I layed down immediately as I felt it coming on. My blood pressure was high when the paramedics checked it the 2nd and 3rd time. I was laying down when they checked it. Actually the 2nd fainting spell I was already laying down. I was laying on my left side with my head propped up on my hand. I panicked and stood up then it seemed to get worse so I layed down. Then the fainting feeling went away. I still went to the hospital. Basically I don't know what's wrong with me lol. As far as the tick born illness, I think she found that in my blood work . I just took mestinon now that I have the proper blood pressure medication to counter act the mestinon giving me higher blood pressure. I'm pretty nervous about taking medication. Reason being these doctors don't study drug interactions enough. My autonomic dysfunction specialist actually told me to keep taking a beta blocker with the med she is giving me. I'm thinking okay I don't want my heart going too slow. I consulted with my primary care doctor and she agreed and put me back on Lisinopril like I had taken in the past. I also wonder if Lisinopril can cause damage to the nervous system itself. I fainted for the first time 6 months after taking Lisinopril. Anxiety is quite exhausting worrying about everything.
  13. I'm a console gamer. Mainly play sports and shooters. And red dead redemption 2 when I can afford it.
  14. I've never heard of a nerve conduction study. My specialist said my nervous system has been damaged from the tick illness and the medicine pyridostigmine br will reverse the damage. I don't trust any doctors. I always challenge their word with research. She also doesn't think I have POTS. She thinks it's more of my body won't stop producing adrenaline and my body gives out. That might also be an issue. It does sound like I have POTS though. When I stand, immediately my heart rate increases by around 50 BPM. She doesn't believe I have POTS because on the 10 minute or so tilt table test, my blood pressure remained high in all positions. She said she doesn't think I need compression socks or anything. But then she showed me a illustration of someone with autonomic dysfunction of a person standing up. The longer they stand, the less blood gets to the brain. Isn't that POTS? So I'm pretty confused. This medicine she gave me combined with my blood pressure medicine might get my symptoms to look good, but how do I know blood is getting to my brain properly? I don't think I'll know until I try and live normal. As for now, I feel sick everyday. I get nauseated a lot but I haven't thrown up yet. I just know I don't feel well. Again, thanks for the responses to help me get through this. It's pretty terrifying not having control over your own body.
  15. 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.
  16. 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.
  17. 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.
  18. 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.
  19. 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.
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