Jump to content


  • Posts

  • Joined

  • Last visited

Everything posted by lieze

  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.
  15. Targs66 I am sorry that you are going through this concerning event. I am feeling everything you describe. More fatigued the past several months. I also feel the moving or lurching when I am sitting still. I get a lot of unpleasant symptoms when I get up. My pressures do spike up but I think it is because my body is in so much distress. But I still get lows. I’ve watched it because I wondered if I need a BP med but as low as I go with my limited knowledge it doesn’t seem safe to me. But like you often there were times of the day symptoms would ease and I could function a bit and now depending on how bad my symptoms are during that day sometimes I just feel unable or too bad to be on my feet. Or while doing an activity my heart struggles I get symptoms so I pretty much stop what I am doing. Happened last night when I was running the robot mop. I was trying to get certain areas that were more soiled and had bent down to pick it up and put it directly on an area. About that third or fourth dip my heart didn’t like what I was doing so I stayed put and still for a while before I even tried to get up and to recline again. I wish I could give you some sort of reassurance that everything is going to be okay. And that we are just in some kind of slump and will pull out of it. I care about what you are going through it hits so close to home and I am living a similar life where I am just sitting on the sidelines get horrible feelings in my chest or in my head. All types of sensations and I also get horrible anxiety. I go back and forth blaming the anxiety blaming different things to just not knowing what to think. If you would like a friend for support to get through this I am willing to try to help support you. I am a basket case myself and sometimes my anxiety is so bad I try to avoid new info all together or I wonder even if looking at my screen sets off my anxiety so I have to just sit and breathe and try to fight off anxiety or if I am getting my bizarre symptoms ride them out trying not to freak out which is not easy for me. These things are a challenge to get through no question. I hope that your doctor can find info that will be helpful and reassuring to you and that we can move on to better days. I have always stressed or focused on how little function I have over the last ten years since I got this condition. I look back now and think wow I could really do a lot and just didn’t realize it. I guess I should just be thankful.
  16. Do you ever get a flush with your increased heart rate?
  17. I also notice certain times of the day where my body seems to function better. Early morning and late evening seem to be good for me some days. Not necessarily every day. So I sometimes wait patiently to feel a lift of symptoms and I can often get away with a bit of activity and I stay fairly symptom free. I often check my vitals part way through and they are often fantastic during this period. I have no idea why certain times of day just seem better. Or I can spend a day or two down and then have a good day randomly sprinkled in where symptoms ease and I can do more and it always amazes me during these times when my body is just ready. It moves and cooperated with ease and I get surprised by that.
  18. I find even though I sometimes feel symptomatic that if I get up every so often and try to do just a small task maybe for 5-10 minutes then sit down again with feet up rest repeat after several cycles of this I start to feel a little less of the bad stuff. It doesn’t necessarily take away symptoms when I am up and I can hit that place too where it starts to feel worse and worse as I do it to where I question do I need to stop? But it can help me shake off some of the bad feelings maybe gets circulation going to get up and move every so often. I am not sure if you are already doing this and I also know that this is not meeting our goal for what we would wish for our lives as far as the ability to be somewhat active at least. It does though take away some of the icky feelings for me and at least while I am sitting I can feel better at least for a while.
  19. Yes I am now noticing that problem. My BP’s go higher and I get dizzy, headache, have a pressure feeling. If this doesn’t let up I would go in and get checked. I watch mine kind of for that reason just to make sure it’s coming down and not consistently rising or getting too high. I can often tell when it is up now and people tell me some elevation with activity is normal. This is a whole new experience for me.
  20. You are so welcome targs66. I get an internal vibration with some foods and I had remembered googling that in the past. If I am not mistaken I had found several people commenting that it didn’t matter what they ate that they experienced this after every meal. I wanted to review that to see if there were any updates. So I put in my search and for the first time this info came up. It makes so much sense to me. My mom was diabetic and said my symptoms seemed so similar to hyppglycemia at times. The thing was we would check my blood sugar and it was always low normal to normal so it did not make sense.
  21. Finally a name for some of what I experience. Evidentially the symptoms are very much like low blood sugar only there is no low blood sugar with this. https://en.m.wikipedia.org/wiki/Idiopathic_postprandial_syndrome
  22. If you want you maybe able to find your triggers and adapt your life to avoid them. And yes the reason we avoid certain things is because of what usually happens if we do it can just be difficult to know what will trigger us and what won’t and can vary from time to time. There are certain times of the day I get the feeling I am okay and can get active and get some things done for instance. I’m sorry you had that episode by the way. It can be a double whammy because rushing also makes you anxious causes your head to spin brings on anxiety and then the physical exertion on top of it so in these situations I wonder if we almost go into panic attack like results. My last time I tried to drive myself to the doctor similar thing where I was trying to make it across town. I was driving down a main road and all of a sudden it felt like I was going way faster than I was but I was doing some intense driving that I am quite sure was causing an adrenaline pump. Well at some point I think I just passed a limit that put me into more of a panic attack. MY heart was racing so fast it just felt like I would pass out. I could not function had to pull over and just wait. Finally called the docs drove in slowly then. They took vitals BP was up for me 130/70ish. I was still symptomatic not as severe they did an EKG and I was okay. I was able to drive home but have not driven since. I feel like I partially do this stuff to myself. I have difficulty staying calm which just makes it all worse.
  23. I’m not sure there is a way to avoid the feelings since it is probably a chemical impact to our brain. I may be off here but I think we need stronger support here of friends who understand and can encourage us through the tough times and cheer us on through a more personal chat line where whenever you feel off you can leave a message to the group chat and get a quick response. This group is a bit more formal which is understandable. I desire close friends who I can talk to either through text or phone.
  24. Yes definitely. I lose all hope. Feel doomed. Cry give up. I feel sad and down and hopeless and it lasts for 24-48 hours and then sometimes I forget and start over again.
  • Create New...