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About lieze

  • Birthday 09/10/1966

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  1. Fantastic Sushi. I’m so happy to hear of your progress.
  2. I’m doing a lot of searching related to nervous system in general and also vagus nerve trying to determine if there might be things I can do for myself. Came across this article indicating the importance of load bearing exercise. i hope it helps someone and I don’t mean to stress anyone. If you cannot get up I understand maybe you could try leg exercises seated or lying. I had a horrible time over the summer where my blood pressure was just so wacky. It ran high if I got up shot higher. But for me things change or cycle. I check it periodically to keep an eye on where I am since that incident. Right now I am 106/67. In comparison at a trip out to a doctor appt a week ago I was 137/85. I felt so hot in that office by the way. But for example I might tolerate just standing up from where I am and shifting weight back and forth for a short while. It wouldn’t burn too many calories and would exercise my leg muscles just a tad.
  3. I wish I would have known this as a new POTSie or any time during my POTs journey. https://www.google.com/amp/s/blog.frontiersin.org/2018/06/07/neuroscience-leg-exercise-brain-nervous-system-health/amp/
  4. Kisekis mine might be neurological also not sure. I get these sensations as it starts like can be a dropping sensation or flushing sensation internal vibration, speeding up of heart rate, anxiousness, sometimes I will feel it hit my chest but whether it actually causes some shortness of breath or makes me feel like I need to catch my breath that can happen and pass or that can happen and I can get some chest tightness. I can get some lightheaded dizziness vertigo fear etc. When I went over the symptoms I experience most with an allergist they said that did not sound like a typical allergy response. However it still scares me.
  5. Pistol I need to do everything I can to get a handle on this and just not stop until I see improvement. Maybe I will get some hints what direction to go after my appt on Friday.
  6. Also related to the way I generally feel I am not sure if I am going through sugar withdrawal. That doesn’t relate to the reactions I get with the foods as much as just my general overall feeling.
  7. The foods I’ve tried that haven’t gone well were chicken, milk, pork, pear, and same just happened with my kamut.
  8. I am scheduled to go to an allergist Friday for food trial. So I am trying to do something about it.
  9. This is crazy but I feel so much better since I eliminated the Gatorade. I was couch bound all summer. Could not get up without my blood pressure skyrocketing. My anxiety was also off the hook. I can get up now and do a few tasks and tolerate it. I feel a nutritional deficit though even though I eat small amounts every hour. This makes me worry gives me anxiety. If I could add some foods with comfort and gain a few pounds I think I would feel better than I have in a while.
  10. This is something odd I have noticed. If I move around it will jump up 10 points or so then come back down. But sometimes I have left it on as I get up and walk around and it does not move at all. It stays steady where it was the whole time. Then when I sit down I get a spike that lasts a few minutes then it will come back down. I totally expected to see it go up as I got up and got active and could not believe how steady it has been. There is no way for me to know it is always this way. I don’t always wear it. But there are times I am up I will check my carotid and it is just slowly beating away kind of like it’s in shock like what the heck are you doing to me anyway.
  11. Along with my POTS I have issues with food that I do not understand. It started soon after my POTS that I would get symptoms when I eat. It made me feel I was reacting to my food like allergy. I am aware that MCAD can occur with POTS but not sure if that is it? I have limited my diet to those things that don’t cause symptoms. For a while I could find foods that I could eat and just feel normal after. Then over time that seemed to change and I would feel a variety of things after I ate that were both uncomfortable and scared me. I used Benadryl ( a drop ) for a while and that seemed to work but I am not sure if it worked because it just helped me relax. I have “reacted” to a couple foods here lately that I was relying on one being my Gatorade which provided easy calories. I have been trying for a month now to add foods and I have failed every single time but the response to all has been about the same. I go tachy which scares me makes me anxious. From that I can get the tingles on my face or other places. Heart rate usually does not go above 120. Stays there maybe 5-10 minutes then comes down. After it comes down I get really sleepy. I watch my pulse ox and it stays good the entire time today it stayed at 99 through the entire thing til the end when I got sleepy it dipped down to 95 but maybe I was breathing more shallow by then. I am not sure if this is just an anxiety response to trying new things. That I am fearful ( I Am ) I wish I could get help because I feel like I am starving even though I’ve been up every hour since 2 am eating trying to get calories in. The tachycardia only seems to happen when I try something new although when I kept trying the Gatorade it happened with that and also I reacted to my egg and baby Lima beans too this week. Any help would be appreciated. I am not on any meds sure wish I tolerated them it would be great to treat my anxiety so that could be ruled out.
  12. Have you tried breathe right nasal strips? I wonder if those would help? It kind of opens your nose up more. I would be calling around to ENT’s to see if someone would take you or if they are only visible at night go to ER get examined and get a referral to ENT from the ER physician. One of my classmates in nursing had some nasal polyps that she had to have removed.
  13. Do you think you have polyps in your nose? Did you ask your doctor to take a look? Or they only swell at night?
  14. Happy Thanksgiving everyone. I am not quite sure how it will turn out but I have been making food and freezing it ahead. Though the last two years I tried to do it all in one day. Yes I ended up laid out in a chair with horrible pain in my chest. So I have mashed potatoes already made and frozen and pie crust is made. I’ve worked hard to clean up kitchen and clear off table etc. ahead of time. I don’t trust my body to be able to do the continuous amount of activity required to prepare a large meal and clear and set table and clean up house all in a woop. So I am piecing it out.
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