Jump to content
Search In
  • More options...
Find results that contain...
Find results in...


  • Content Count

  • Joined

  • Last visited

Posts posted by Derek1987

  1. I'm seeing a neurologist separate of my autonomic dysfunction specialist. The only reason is because I just want to find out everything possible. I told him my background that I have autonomic dysfunction and gave him my Dr records from my specialist. 

    He did a couple tests I've already done before. Today I did an EMG. The guy put some gadget to both arms and my right leg and gave them shocks I guess. 

    Then the Dr came in and put needles in my arms and then my right leg in various places.

    Is this test even beneficial for us? I'm just wondering what it can find out.


    On a separate note, while the test was slightly uncomfortable, my body must have hated it. I've been laying down for hours with my heart rate a little over the 100 range. And my bottom BP number is higher than normal for laying down. I also have a small fever. That heart rate and bottom BP number being that high while laying down is not normal for me. I hope it's just my body couldn't handle the test and needs time to heal. I hope it didn't mess anything up.

  2. On 7/3/2019 at 4:40 PM, Pistol said:

    @Derek1987 - I only take 1/2 of a Flexeril or I would be a zombie too. Try the half dose next time nd see - for me it works for the pain mut does not cause the extreme sleepiness that the whole tablet does.  

    I haven't taken one since lol. My pain has gone away 90 percent. It's been a week I guess. I read muscle spasms are a part of this disease. Quick Google search so not so sure how valid those findings are. I'm scared of my blood pressure dropping too low because I still want to take my carvedilol. Although that doesn't seem to be helping. Sometimes it brings my blood pressure down but I still suffer with bad anxiety, sweaty palms, high heart rate upon standing etc. 


    Ive  got to figure out a way to exercise. Gaining too much weight over here. Ah so annoyed with this. Couldn't even pop fireworks with the kids. I love fireworks. Bleh.

  3. On 7/2/2019 at 12:40 AM, KiminOrlando said:

    Could the calf muscle have been small fiber neuropathy? Could the chest be costochondritis? Look them up and see what you think. Any autoimmune issues?

    Sorry this is happening. We never know what is real or not.

    I don't think I have those idk. No autoimmune diseases have been discovered as of yet. Still pretty new in this journey of figuring out what's wrong with me.

  4. On 7/2/2019 at 6:36 AM, Pistol said:

    @Derek1987 - I had similar pain and shortness of breath in the past nd all checked out OK, including chest CT. I went to the chiropractor and got an adjustment which helped a lot. They considered costochondritis as well as pleurisy but never actually found out what it was. Since you ruled out serious issues ( good job by the way for going to the doc  rather than waiting around ) I think muscle relaxer and NSAID is appropriate. NSAIDs help not only for the pain but most importantly  with the inflammation. I hope you feel better soon - like you need something else starting!!! Be well!!!

    The muscle relaxer helped. It is Flexeril. But.....I took it and I did not want to wake up. I could have slept 2 days. I got up because someone rang the doorbell. I ate and went and checked my blood pressure. It was 148/55.  This is without me even taking my beta blocker yet. I took my pressure again and got similar results. I got nervous about the bottom number being so low and took midodrine. It got it back Into normal range and my top number dropped to about 140/high 130s. 


    Don't understand why there's such a huge gap. I'm scared to take the Flexeril again. It helped but I don't want my pressure going too low and I know I need to take my carvedilol. So basically I'm still in pain. Shrugs.

  5. It started maybe 3 days ago. My chest was hurting. Today I woke up and it's the worst it's been. It hurts to breathe and move certain ways. The pain goes from the center of my chest up to the whole area around my collar bone and then even to my shoulder blades. It feels like stress. But 3 days in a row constantly and getting worse?

    And at the same time my right calf muscle was sore as if I had a cramp and was recovering so I got a little nervous. I went to the ER to make sure I wasn't having any blood clots. That checked out fine. There was no fluid in my lungs or anything. X ray and blood work came out fine. The doctor said muscle spasm something. My memory is shot. My wife stepped out because we had been there for hours. He prescribed me a muscle relaxer and Aleve(oh wow that'll help)

    Is this a POTS issue? I've read about people having pain and I haven't had any pain until now. Is this a type of pain people experience with POTS? 

  6. 2 hours ago, DizzyGirls said:

    @Derek1987 - Thanks for the suggestion for the "blue light app"!  Just downloaded it on my phone and going to download it on my daughter's phone.  She currently cannot use her phone, and hasn't been able to for the past year.  It causes very bad vertigo.  It has something to do with the screen, not even the motion of it.  Hope this works!

    Cool. Let me know how it works.

  7. You can download an app called " blue light filter" that changes the light on your phone at night and supposedly helps with this. You can turn it on and off as you please. I don't know if the science is legit or not. Never really researched into it. I think some phones have that mode built in. But I don't pay $1000 for a smartphone like so many people somehow do. I'm definitely addicted to my phone. My problem is I can't sit still. I have to be playing a game or on the internet or something. It seems to help me but maybe it's not. I don't know.

  8. So in addition to taking carvedilol, my autonomic specialist prescribed me Bethanechol 10mg 3 times a day. She explained the purpose but I forgot everything she said lol. My wife probably remembers but I want to get y'all's experiences with it and what the purpose is. 


    I took a test which showed my adrenaline levels are still high. They attach 3 electrodes to your body and tell you to hold your breath for so long etc. And somehow it determines adrenaline levels. The first time I did the test I scored an 11. A normal person is a 1. This time I scored a 4. Which according to the results, that's a lot better but I'm still not normal.


    the weird thing is, I felt way worse during this test than I did the first time. My hands and arms got super red like fruit punch red, my face got flushed where my forehead got moist a bit. I had a jump scare feeling happen during the test. I also felt like garbage after the test.

    according to the results, I'm supposed to be feeling better. But I haven't noticed a change. In fact I feel worse I think because of the heat. 

    Anyways what's your experience and knowledge on this medicine. And if you any thoughts on everything else I said, I would be interested to hear about it. Thanks!

  9. On 6/25/2019 at 8:20 PM, Scout said:

    @Pistol — Thank you so much for the kind words. Honestly, it really helps to know it gets better. It's so easy to feel like this is it... like it won't get better, but thank you for reminding me that there are still options, and that things will improve. It's just about finding the right balance and combination of meds. 

    My autonomic specialist is away for July and August, so I am seeing her in September when she's back. I'm so hopeful for some progress. Also seeing my cardiologist in a month. 

    @bombsh3ll Thanks so much also for your input and your kindness. I'm so sorry that we are all going through this. It makes total sense what you say about the low blood volume / low stroke volume, and how the sympathetic nervous system is therefore working on overdrive. Frustrating having bodies that do this, but hopefully we can adapt as well as possible. Thanks again. 

    @Derek1987 My illness started around 10 years ago. I had a bad episode with my heart condition, and then, all of a sudden, was having POTS symptoms (I didn't know it was POTS back then). I think possibly my heart issues triggered my ANS to malfunction, or visa versa. My specialist said a lot of people — especially females — seem to have mitral valve prolapse (what I have), and dysautonomia. They think those things are likely linked. How about you? When did this all start happening? 

    I think I've had it all my life in my opinion. My dad takes meds to slow his heart down. His hands have shaken all of his life. So have mine. People always would point it out to me. I've always had anxiety since I can remember.


    I started having heart palpitations in my early 20s. I started being extremely fatigued as well. I just wanted to sleep after work because I was so tired. I guess I just ignored it and kept moving.

    I got married in 2016. Which obviously I had less time to even sleep. I was so tired all the time and my wife would complain in rage because I never wanted to do anything but rest when I could. 

    Fast fwd oct 2017, I was at Olive garden. I finished my meal and got really light headed. I got super hot. Lost my vision, my hearing, and the ability to move. Obviously I was taken to the hospital. I thought I was dying. The doctor said it's nothing to worry about.

    Fast fwd to Sept 2018 my wife was arguing with me about something. I was exhausted. And my body tried to faint out of nowhere. No warning signs. Went to the hospital. Found nothing wrong of course. It was a 3 day weekend so I rested. I went to work Tuesday and made it fine. Still exhausted. Wednesday after 4 hours on the clock, I was walking and felt like a shock punch to my stomach and my legs gave away. My body again was trying to faint. 


    That's the last day I worked. After many doctor appointments and referrals, I'm just now being diagnosed with hyperpots. 


    I have horrible anxiety most of the day. I went to the doctor a couple days ago. I was out of the house for like 5 hours. The adrenaline from the heat and being around people and sounds was killing me. When I got home, I couldn't keep my eyes open. Went to sleep. Woke up. Slept some more. 

    I went to my autonomic specialist today and did another test where they put these electrodes on your body then you have to hold your breath and stuff. I couldn't believe how bad I felt. My hands and arms turned super red. My forehead got a bit moist. Just from breathing a certain way. 

    I pretty much suffer 90 percent of the day. I can't and don't go anywhere but to the doctor. Anyways I think I've always had it, and it was passed down. The older I got, the more my body couldn't handle it I guess.

  10. 4 hours ago, Scout said:

    Thanks so much @Derek1987. Indeed — at least we can all be here for each other through this! 

    Your BP issues sound so similar to mine. It can be very episodic, but it's just... so odd. 

    I hope that you're right and one day it gets better. We have to have hope, right?


    Yes yes. How did your illness start? Did it come on suddenly or gradually over time you had issues popping up?

  11. 3 minutes ago, Scout said:

    I'm so sorry you're in the same boat @Derek1987

    I'm 31 as well. 

    We are far too young to be having this happen and it's just so unfair.  It's not fair no matter the age, of course, but I think perhaps harder to deal with when we have people saying "shouldn't you be fit and healthy?" 

    I wish I could figure out what the h*** my body is doing, but for now, I guess it is what it is. 

    I thought for sure that laying down and not having the water hot in the shower would help, but it barely changed things. My BP is still shooting up — just not quite as high. I wonder if lifting my arms at all is causing it to go up. 

    Anyway. I hope you have an OK day Derek. 

    How high does your BP go? 

    I've had a reading at the doc's office 180/120. It's not usually that high but it always goes up when I do anything at all. If I do a chore 10 mins or longer, it's not unusual to see 150s over 100 plus.

    My lower number is always in good range when I'm laying down. My upper number is still high for some reason. A little lower laying down than being upright but still high. Then again sometimes both numbers go too low laying down. Because of meds. Sometimes I'll have to take midodrine to boost my pressure. It's a hassle checking bp all day.

    I went to the doctors today. I am so freaking tired. Not to mention tortured with adrenaline as I sat there. Looking like some type of addict. I had to go lay back in the car at one point. This disease is terrible. I want to do outdoor adventurous things. I love the outdoors. Can't do anything now. I go nowhere but to the doctor. 

    Hit me up if you are feeling down. We can bond in our misery lol. Maybe it'll get better someday.

  12. 4 minutes ago, Scout said:

    I'm so confused and angry. 

    I have been having lukewarm showers sitting down and my BP is still going up.

    I just don't get it.

    It comes down as soon as I lay down on my bed. 

    It feels like no matter what I do, things just go wrong. 

    Sorry — I'm feeling very frustrated today. 

    I'm frustrated and depressed daily on top of being tortured. You aren't alone. I'm only 31. My wife and I can't even go on a honeymoon anymore. Unless something changes. I feel like utter trash today just from going to the Dr. Extra utter trash. But yeah, you aren't alone.

  13. 3 hours ago, Delta said:

    Found it; thanks for posting the item # or whatever number it is - I am definitely going to try this!  It will beat looking for a magazine or something to fan myself when it gets too warm.  I can't believe how tiny it looks in that person's hand!! 

    Yeah it's awesome and really helps me. I wore sunglasses in the lobby(attorney's office) on Monday with the fan blowing on me. Probably looked crazy but the combination really helped me. Especially the fan though. When they called me back I just turned the fan off and folded it up and put it in my pocket. 

  14. 2 hours ago, Delta said:

    How about sitting in a warm exam room with the door closed and no windows while waiting for the doc?  Not even any air movement; ugh!  I have wicked heat intolerance as well so thanks for the tip.  I  can't believe I used to be able to be active for hours in the sun.

    Yeah. I tried to support my wife by going to one of her appointments. When I was sitting in the room like that. I had a major episode. Thought I was going to have to go to the hospital. I layed back in my chair the best I could. Eventually I felt better. Or enough not to have to go to the hospital. 



  15. I have really bad heat intolerance. Sitting in a lobby at the doctor is already tough. And then it's noisy and crowded and usually hot. When I get hot, my body wants to act crazy and go into faint/adrenaline mode. So I bought this fan off of Amazon. It is a dual head fan that folds up and is compact and fits in your pocket. It puts out a great amount of air even on the low setting.  It has low and high.

    I did a test and it lasted 2 hours on high speed. It was still going but I couldn't stay up any longer and see how long it would really last. 

    Just thought I would share. It's helped me.


    Edit: to find the fan I am talking about, type this in Google and it will pop up. 


  16. 6 hours ago, Delta said:

    This sometimes happens to me when I have to sit still for a while and yes, I do believe it is from sitting still for too long.  It happened last week when I sat for maybe a couple of hours straight, getting caught up on newspapers and mail.  A couple of things have helped me with this - first, moving about in *whatever manner is possible at the moment* if I can't get up and start walking.  The OP mentioned getting haircuts and sitting in a car but even sitting in a car isn't bad (unless I'm the driver and am at a standstill in traffic) because if I'm a passenger, I can still move my legs around and shift positions, move the seat back, and, if I'm the driver, I can still be in control if I need to pull over.  Stuck in traffic and driving myself, no place to pull over, different story.  Then I crank up the A/C full force and blow it on my face, no matter how cold it is outside, and take a swig or two of ice water I keep on hand in a tumbler.  And take deep, slow breaths and try to distract my mind and not think about it, because that makes it worse.  Sing to myself or something. 

    I think one reason haircuts are tricky is that you're "expected" to sit still when someone's working on your hair so you might not be so comfortable to start "fidgeting".  I was on jury duty yesterday and you know how that goes, sit, sit, sit . . .  I started to feel a little bit woozy after a while so I started moving my legs back and forth as I sat, you know, bending them at the knees as if I were walking.  Drank a bit of Carnation breakfast drink I had in my purse, as a distraction.  It helped, but I was kind of wiped out by the time I got home a couple of hours later.  DH wisely advised me to hit the bed!



    Sat for 20 mins at an attorney's office today to get her attached to my case. Plus the car ride. Feel like I've worked a 16 hour shift. Had to take a nap like an 80 year old man.

  • Create New...