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    • #14969
      Iris Alexander
      Participant

      I’m in that Facebook group too I haven’t checked it out in awhile though thanks for reminding me

    • #14491
      Iris Alexander
      Participant

      Great post I’ve learned a few things here I will have to look into the NIOV although even after reading about it I’m confused on what it does or how it works exactly. Lol And I’m very curious about the oxymizer cannula. I fly through tanks I’m on 5 liters work full time one tank lasts me maybe two hours or a little under and that’s with me turning it down to 3-4 at rest. I had the simply go POC for 2 years and I suffered. I went on my first and probably last cruise with the POC, ended up having to rent a manual wheelchair and be pushed around it was depressing and ruined the trip I could not walk at all. Shortly After that and two hospital stays later I realized I needed more liters on a continuous flow so back to tanks I went . As much as a pain in the butt they are I feel waaaay better with it then struggling with the POC.

    • #14235
      Iris Alexander
      Participant

      Oh tooth pain is the worst!

    • #14218
      Iris Alexander
      Participant

      I was on that med years ago I didn’t have those side effects but I did have horrible headaches and jaw pain.

    • #13998
      Iris Alexander
      Participant

      Thanks Brittany for reminding about those massages. My girlfriend use to get them for lymphdema but I never thought about needing one myself

    • #13997
      Iris Alexander
      Participant

      Brittany does your doc think these changes are permanent?

    • #13956
      Iris Alexander
      Participant

      Wow I experience all of this and had just attributed it to me getting older. I’ve had migraines all of my life before PH but the past 2-3 years my memory and concentration has been horrible. I use to love to read now I struggle to stay focused and retain what I read

    • #13955
      Iris Alexander
      Participant

      I’m not on the sub q any more but when I was I communicated with the company that the meds came through (in my case ACCREDO) and they sent me a topical pain solution to rub on that helped a lot and the home nurse who worked as the person who trained me on how to set up my meds suggested affrin nasal spray you just spray it on and rub it this helped with the itching ALOT …I know we are not medical professionals here so you should ask your doctor or nurse about that first

    • #13954
      Iris Alexander
      Participant

      Your both spot on. I have my low bad days and my ok days. When I’m in a rut emotionally I try not to linger in it past a day maybe two if it’s particularly hard then I consciously have to drag myself out of it. I don’t avoid it though I let myself have it. When I’m not feeling well mentally or emotionally my symptoms worsen…the brain body connection is real

    • #13953
      Iris Alexander
      Participant

      Brittany was spot on I think you need a clear definitive diagnosis which will require more tests particularly the right heart catharization test.

    • #13952
      Iris Alexander
      Participant

      Yeap Brittany best believe I won’t miss it another week

    • #14970
      Iris Alexander
      Participant

      Sorry Brittany I guess I’m just seeing this! I’m still not sure how to navigate on here that well. I haven’t tried Mrs dash in years

    • #14531
      Iris Alexander
      Participant

      Ah thanks Brittany now I under the NIOV. I hope it works out for you!

      Thanks Constance even ten years in I still do like to hear others feel the same as I do.

    • #14217
      Iris Alexander
      Participant

      Wow I’m glad to see this I will pay more attention. I’m on this medicine have been for a few years now and I have anemia. My numbers go up and down causing me to have to take iron some times three times a day. I thought it was causing me increased fluid retention along with my other ph med adempas but my doc didn’t seem to think so.

    • #13951
      Iris Alexander
      Participant

      Brittany what seasoning do you use ?

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