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Everything posted by Derek1987

  1. She said that's what the mestinon is for. It slows my heart to a degree but I'm still in fight or flight mode most of the time. She claimed the mestinon would heal my nervous system. She was talking about how western medicine only treats symptoms. She said the word heal and of course I'm highly skeptical. And more so now since I see other people take it on here and still have issues. I also take Xanax. Not prescribed by her. It helps but not 100 percent. Monday I had a CT scan on my adrenal glands to see if I have any tumors on them. I don't think I'll have any. Anxiety has been a problem for me since childhood. It went into overdrive after I blacked out for the first time in Oct 2017. PTSD for sure. My wife would tell me nothing is wrong and sometimes people just faint. Everyday I would be like am I gonna faint am I gonna faint? I would see stars and feel pins and needles in my hands. Fast FWD to September 2018 and I had 2 near fainting spells within the same week including one at work which both resulted in ambulance rides. After the one at work, it was like I was broken. I haven't regained my strength. I was always exhausted everyday but now I experience so many other symptoms. And I've had a few more near fainting spells since including that one this week.
  2. Yes. I've only seen her once though. Waiting to see her again. She has me on mestinon to slow my heart rate down. She claimed it would heal my nervous system. So far, I'm still the same. I did a few tests that day I saw her. So far, Rocky mountain was detected in my blood work. She claimed it damaged my nervous system. I did a tilt table test. Laying down 81 standing up 126 BPM. My blood pressure was high in all positions but my heart rate changed. I did a 24 urine test but I don't know the results. The brain MRI came back pretty much normal. She showed me a graph of a person upright and how blood fails to reach the brain over time. Then she also said she doesn't think I need compression stockings. She just thinks my adrenaline is in overdrive. So that confused me. I've fainted and had several near fainting episodes. I know my adrenaline is in overdrive though.
  3. Hey Pistol. FYI you have been my MVP on this site with your help and knowledge. What is NCS or OH? I too am wondering what my condition could be as I don't think I've been diagnosed. My tilt table showed my heart rate jump up from 81 to 126. I had a near faint episode at my wife's doctor appointment yesterday(scary). Today I actually went grocery shopping with my wife. She was mad at me because I was rushing her. I'm explaining to her I don't know how long I'll last and I don't want to end up at the hospital. The last few sentences were random sorry. But yes what are those other conditions you mentioned?
  4. Do your arms turn red as well as your hands? Do your veins pop out?
  5. Notice the change in color. Trying to gather evidence for my next doctor visit.
  6. Today I went to the doctors office. It was an appointment for my wife. My anxiety was up. My palms were sweating the whole time. My hands were red and veins were popping out of my hands more than usual. I've noticed my whole arms from the elbows to the hands turn red with my veins popping out when I do a couple basic chores around the house. I was also nauseated and had a weird feeling in my gut. Not anything new. Anyways we sat there for about 2 hours in the lobby then finally get called back. I was talking to my wife and in mid sentence it felt like I was going out. I got hot, my breathing was heavy and my heart rate jumped up pounding out of my chest. I layed back in the chair for about 10 minutes trying to calm myself down. The doctor finally came in and we left. For the record I have blacked out completely once. And multiple times where I felt like I was about to pass out. I've had near fainting spells where my body is actively trying to faint without a break but I stay awake. Then I have these episodes where it feels like I'm about to go out and I somehow fight it off with trying to relax and lay back or lay down. My wife says I need to start going to the emergency room when this happens to leave a paper trail. But they never help me and I'm already stressed and don't want to hassle with it. I think next time I'll have to go ahead and go. What do you guys make of what I experience?
  7. Well the update is my doctor wrote me a note that my employer accepted. I am no longer under the threat of being terminated at this time. They can if they want because my FMLA is up. I was talking to my PCP's nurse. She handles the notes. She wrote up my restrictions on a different note for the disability part. I was explaining to her I can't stand up for long periods of time. She said my doctor records from my specialist don't give me a case for that claim. Even though I had a follow up with my doctor and explained to her what the specialist told me. My specialist told me not to drive. She said it's safer to take baths. She told me the longer you stand, the less amount of blood gets to your brain. I have faint/pre faint episodes. The Tilt table test showed my heart rate sky rockets when I stand. So I'm not sure if I convinced the nurse or not to write me restrictions that take me off of work. I work in a pharmaceutical warehouse. My job.... I am on my feet pushing a mobile computer around. I'm on my feet the whole day. I have to be because I move product around. That's how I came on short term disability in the first place. It was my 3rd fainting episode and I had two within a week. The 3rd was at work. I felt a weird feeling in my gut then I collapsed. I could feel my body trying to faint while I was laying on the ground waiting for the ambulance. It went away in the ambulance then came back while I was at the hospital. When they gave me Ativan my fainting feeling went away. So the note for my employer says my specialist recommends me to be off at least until I see her next time. So if my restrictions for disability say I can work, it'll make no sense. I don't understand why my PCP won't just back me 100 percent. My specialist sent me a message through the portal saying my return to work timeframe depends on my next visit with her which I haven't had yet. My PCP has seen this message herself. So we will see. It's been a mess. If they say I can work now, I'll probably just have to quit. Or just go up to work and get sick again. But I do have faith in God so whatever happens, I'll be okay. I'm just anxious to get to where I'm going.
  8. I don't know enough to fully answer your questions. But I do know the more fluid you intake, the higher your blood pressure will be. My urine is always darker in the morning. Maybe someone else can shed some light.
  9. Sorry if this is the wrong section. My wife received a fully favorable decision in the mail today for her health problems. It doesn't say how much she will get. It went to the hearing level. I'm assuming our next step is to visit the social security office and give them our banking information? If that's the case, how long until a payment is issued? It's my understanding she will probably receive backpay later. I'm just anxious to know because now that I'm sick and my short term disability is still pending an extension, we are in bad shape financially. Thanks for any knowledge given!
  10. I've only seen my autonomic dysfunction specialist once. She said I don't need compression stockings because my blood pressure was high (along with heart rate upon standing). At the same time she showed me a chart as if I was receiving a lesson in school of a person standing up and how over time, less and less blood gets to the brain. Wouldn't that be a drop in blood pressure? Or no? I'm confused. When I fainted the first time the paramedic said my pressure was coming back up in the ambulance. I honestly don't trust any doctor. I always do my own research. And most doctors have egos. Not all of them. Don't get me started on hospital doctors.
  11. Thank you for your replies and support. I got a response from my employer on what they are looking for the note to say. I took it to my primary care doctor today. Again. I know they are getting sick of me. I have to turn it in by Thursday or I lose my job. Just from that trip I'm trembling, nauseated, and have that same weird feeling in my gut. Lord have mercy. I gotta lay down. Hopefully this note will satisfy my job and short term disability. This is my last shot to keep my job. I'm fighting for it even though I don't think I can do it. We will see what happens.
  12. My insurance company contacted my employer about that already. I never heard anything back so I'm guessing that's not an option. The insurance lady asked me on the phone if I'd be interested in a sit down job and she would contact my employer. I was like lady i don't know I even faint sitting up. And this was after they saw the message from my specialist I won't return to work until I see her again. I was like why would I say yes and my doctor is saying no but the problem is she won't vouch for me. I'm totally getting screwed here. It's on my primary care doctor. But it seems like my primary care doctor doesn't know what to do and are being cautious and putting it right back on the specialist. Nobody will just vouch for me. I'm basically about to lose my income. My primary care doctor's nurse is actually the one writing up the notes for me. I guess I'll have to contact my primary care doctor yet again and see if they will do a restrictions note .But the nurse already told me she can only put what my specialist said. I guess they are too ignorant on autonomic dysfunction and are covering themselves just in case. All this is doing is bringing on more heart palpitations🤦‍♂️
  13. So I've been on short term disability since September. They stopped it December 12th. For no reason other than that was when I got my brain MRI results and that was the last test done by my autonomic dysfunction specialist. I did a tilt table, 24 hour urine, blood test, and a brain MRI with my autonomic dysfunction specialist. I did all of this within a course of a month. They found I've been exposed to Rocky mountain. My specialist said it messed up my nervous system. My heart rate jumps up 50BPM plus 100 percent of the time upon standing. Verified by the TTT and my own tests. I am taking Mestinon now to help that. I asked my specialist when I would be able to return to work through their online portal. She said it depends on how I respond to treatment and going over the test results the next time I see her. I actually sent that screenshot to my disability insurance company. My next appointment isn't until February. Here's where the problem came in. My disability insurance company contacted my specialist. My specialist said she never took me off of work and she gave me no restrictions. Although during my visit I was concerned about returning to work and not losing my job. She said don't worry about it. She told me not to even drive. Thats a restriction technically right there. So now the disability company is making it impossible for me to get approved even though they saw what the doctor said on the online portal. In my eyes that's technically a medical document. The off work restrictions started with my primary care doctor then continued with my cardiologist but for some reason my autonomic dysfunction specialist won't vouch for me. She said its in the hands of my primary care doctor. So my primary care doctor wrote a note saying my autonomic dysfunction specialist has me off until I see her again. I sent the letter to the disability company and they told me that's not enough information to support my claim. They want restrictions from every single doctor I go to. The problem is not all doctors give restrictions. My cardiologist said they can only cover me for the time up until I saw the autonomic dysfunction specialist. My autonomic dysfunction specialist won't do restrictions period. The nurse for my primary care doctor says all she can put on the note is what my specialist said. My last effort with my primary care doctor is to ask if she will write me a restrictions letter. But it seems like they aren't interested in doing that. It's as if doctors are scared to vouch for me. So it's either I go back to work sick and probably end up quitting because I can't handle it. Or get fired. I have a family to take care of. My wife is actually disabled from bone/nerve diseases. She was approved by the judge November 7th so we are still waiting on that. That's a positive but we literally have no income. It looks like I'm gonna have to go back to work and see how long I last. I stand on my feet the whole day. Man I am stressed.
  14. I've fainted or near fainted in every position. I get flushed on a daily basis. I usually go multiple days in a row with feeling nauseated before I get a break then it comes back. I'm new to this life so I'm scared as you are. And I have no income in the household right now. The disability company for my employer is doing everything they can to get me off. So I'm stressed out on top of everything. I take Xanax to relieve my anxiety which is something I've already had. But my anxiety went into overdrive after the first time I blacked out. Feeling like you don't have control anymore is so scary. You aren't alone. I think it's just a learning process on how to deal with this and what triggers your symptoms. I know some more experienced vets of this forum will have some more knowledge and bring you more comfort. But you aren't alone.
  15. Any information on when the blood pressure feature will be released? Thanks for the information.
  16. Anybody have a smart watch that detects heart rate and blood pressure accurately? I know they can detect heart rate but blood pressure? If they exist, I'd like to get one.
  17. Thanks you for sharing your knowledge!
  18. I haven't been able to talk to my doctor yet. I requested lab results and had them mailed to me. I'm going to type what the results say and see if you guys can relate. It says There is no acute intracranial hemorrhage, infarction, mass effect or hydrocephalus. The major vascular flow voids are grossly normal. There is mild fluid in the right mastoid air cells. The left mastoid air cells are clear. There is a small left maxillary sinus retention cyst; the paranasal sinuses are otherwise predominantly clear. The skull marrow signal is normal. The visualized soft tissue, orbits, and globes are normal. Has anyone had results like this, and was it relevant to your dysautonomia?
  19. Just a couple facts. Every time I stand my heart rate increases by 50 plus BPM usually around 130. Laying down it's in the 70s. Mestinon brings it down 10 to 15 BPM. This morning my blood pressure was pretty high upon awakening. 150s over 100. So I took my blood pressure meds. I don't take them everyday because my blood pressure is in good range usually as of late. Not all of the time though. So a couple hours later I take my blood pressure laying down and it's 101/66. So that alarms me a bit because I've fainted or near fainted a few times. So I got up and got some coffee to bring my pressure up a bit. I gulped it down and layed down immediately and my pressure went up to 140s over 70s. It seems like when I stand up not only does my heart rate increase, so does my blood pressure. From my little knowledge on POTS, it seems like I'm experiencing the exact opposite of POTS. But at the same time, I know for a fact my pressure has dropped too low from the first time I fainted. I remember in the ambulance the paramedic told me my pressure is coming back up. I was just curious to what you guys think of this.
  20. I'm learning spicy food and alcohol help trigger fainting spells for me. I don't drink often so that doesn't bother me. But giving up spicy food hurts. 😟
  21. Now it's stopped. Lasted about a week and haven't seen any blood since. Shrugs.
  22. Sorry TMI but I've noticed this past week, my toilet paper has blood on it. I go everyday. Sorry again.
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