Jump to content

AllAboutPeace

Members
  • Content Count

    454
  • Joined

  • Last visited

Community Reputation

0 Neutral

About AllAboutPeace

  • Rank
    Advanced Member
  • Birthday June 21

Profile Information

  • Gender
    Female
  • Location
    Canada

Recent Profile Visitors

2,093 profile views
  1. bumping this for anyone who hasn't seen it before. Wishing you all a holiday and New Year filled with comfort and peace!
  2. There would be no kitchen cabinets or closets below waist level or above where we can comfortably reach. The phone would be hooked into an intercom system that responds to your voice from anywhere in the house - "answer phone", "dial", "saline delivery" Lol. There would be no - hearing the phone ring, knowing it's not in the same room (or even if it *is* in the same room!) and wondering if it's going to be worth the effort to get up and answer it... The same intercom system would be able to open the back door, by voice command, to let the dog out (into the fenced in backyard) when he/she needs
  3. Lol. Ditto to the last few comments!! Actually, I can relate to everything in this thread. When I get that total blanking, I notice the other person looking at me and waiting for "something" to come out of my mouth. It seems like it's happening in slow motion. Lol. It's funny to see how different people react - some will feel the need to jump in and finish my thought and some will just look away and pretend the conversation ended and move onto the next topic. They are accustomed to it now - it's part of the package. I have had a lot of cognitive issues, but thankfully they don't seem permane
  4. Angie, I agree with you about wanting them to look at the link closer. When medical authorities from around the world are questioning a possible link, I think it warrants attention. It was reassuring to see that there are doctors like that who are willing to keep pushing for their patients. We need to figure out some way to clone them. The very-active-before-pots scenario has popped up quite a bit over the years; I'm curious about that - particularly with the ratio mentioned in the video. It's counterintuitive - we tend to think that more activity makes us more resilient to illness. Maybe i
  5. *just to clarify...when I said I'm having a hard time getting rid of my energy booster - I didn't mean it's a hard med to come off of. Just that I'm a little hesitant for fear that I will be a sloth again.
  6. Singout, Yes, you can have this condition with a normal looking BP. My BP was great on my TTT until it suddenly plummeted. It's amazing (and frustrating ) how badly we can feel with good looking numbers! I have pots/NCS with low BP and low resting HR. Fatigue/exercise intolerance has been a huge part of my illness, too. I did benefit from Florinef (although it only raised my BP very minimally). I didn't respond well to Midodrine - it dropped my already low HR lower which put me on the couch more. My EP prescribed one coffee for me in the morning and I did notice a benefit from that. I couldn'
  7. Lol, Sarah - "I notice your painting...it's nice". Yes, you know it's not a productive dr's appointment when... It's torture sometimes to sit through the appointment when you know in the first few minutes (maybe even seconds) that it's going nowhere.
  8. I think a meaningful tattoo is a great idea. The 'spoon' ideas are great and very symbolic. Becia - I love your idea, too. If you can't get the tattoo, it might also be nice to have it done up (draw it, graphic design - computer generated and print it, paint it, use clay to sculpt it - the craft kind that you bake, etc) and put it somewhere you can see it everyday. Sarah: Without a doubt when I think of this group, I think of strength and courage. You have courage for so many things you deal with everyday. You have courage when you smile amidst all of the chaos and uncertainty about what is
  9. Aww thanks, you are all too kind! If my silliness made even one of you smile, it was worth doing! Even when I'm not posting, I'm part of the silent cheering squad for all of you.
  10. 'Twas the night before Christmas in the little town of Potsville, It's a place of courage and plenty of strong will! Everything is peaceful, long after the sun has set, Except for the screen glare - someone's searching Dinet. The (compression) stockings were hung by the chimney with care, In hopes that St Nick could squeeze *something* in there. The Potsies are laying awake in their beds, While visions of salty snacks run through their heads. When out on the lawn there arose such a clatter, Fortunately, I was up already - dang bladder! Away to the window, I stumbled, trying to see, But feeling
  11. Oh no! Did you call a pharmacist to see if there is something you should do? I can never remember if I've taken my pills either. What I do now is just put my morning pills (not the bottles - just the individual pills) on my nightstand with water the night before. I have a water bottle with a little concave in the top, so I put them in there. If they're gone I know I've taken them. Same idea as the pillbox. Definite Pots brain here too! Hope you have an uneventful rest of the day!
  12. The med trial and error can be very disheartening for sure!! I feel for you - many of us have been there. Just a thought about Florinef. If you find it helpful in some ways it might be worth discussing with your doctor the possibility of adjusting the dosage a little. I have the same symptoms you are describing (constant headache, bloating) when my dosage is too high (for me). I don't have those symptoms at all if I adjust down even by as little as a quarter of a pill. Its amazing how much of a difference that little amount makes. I only feel the benefits when it's the right dose. Midodrine
  13. I would say that Wellbutrin gives me a little more focus and an overall boost. It makes me feel like I can do more. Honestly, it feels very much like the boost I get from coffee - which is a good thing for me now, even though I couldn't tolerate it for the first year. Wellbutrin did raise my blood pressure - which was also a good thing for me. I tucked my BP cuff away in a drawer months ago because I don't feel a need to check it. So, I would say it helps with constant lightheadedness/ spaciness, but when I stand and the pooling starts I still have the lightheadedness that comes with that. I
  14. Andy, I agree with Corina, those measurements would be helpful. I've been told it's a good sign if it's raising up with movement. Bradycardia has been an issue for me as well, for about two years, and I've always felt extra symptomatic with it (sluggish, lightheaded, weak, sometimes nausea), especially if I was up and trying to function. Sometimes I could raise it up and sometimes not. I even dragged myself to my recumbent bike one night and tried to raise it up that way. The hr wouldn't budge at all. It was definitely one of my least favorite symptoms (as if there are *favorite* ones...) be
  15. Goschi, I thought you might be interested in this 2013 study: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3478101/ Excerpt: Using only the current 30 bpm criterion, 80% of control subjects would have been diagnosed with orthostatic tachycardia (false positive rate) using a 30 minute tilt table test, compared to only 47% with a 30 minute stand. The false positive rate for a 10 minute tilt was 60%, compared to 33% during a 10 minute stand. _______________ The numbers of false positives is crazy! I think it's worth noting that during the 10 min stand (which was shown to have less false positi
×
×
  • Create New...