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  • About Me

    Image of LHG

    LHG

    Female, 44
    CO, USA
    Member since July 13, 2007

    • About Me

      After going to many specialists for several years, I was diagnosed Sept. 2008, with Narcolepsy w/ cataplexy, along with the heart/circulation condition called Postural Orthostatic Tachycardia Syndrome (aka POTS). I also have facial & ocular Rosacea, and Interstitial Cystitis.

      After going to many specialists for several years, I was diagnosed Sept. 2008, with Narcolepsy w/ cataplexy, along with the heart/circulation condition called Postural Orthostatic Tachycardia Syndrome (aka POTS). I also have facial & ocular Rosacea, and Interstitial Cystitis.

    • Interests

      Being with my family!

      Being with my family!

  • Recent Activity

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  • Hugbook

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    • Prayer

      From Porcupine June 28

      Thanks Lisa for your wonderful response. I think I likely had this for a while too but it showed itself in a strange way. One day I got our of the shower, and I did like hot ones, and my entire body was on fire...literally. I told my husband I felt like I was standing in the middle of a furnace. Only my face, believe it or not, was not burning! It subsided but for days, the tops of my legs were burning. I went to the Dr. and he sent me for blood tests, thinking I was low on vitamins, checked the Thyroid, liver, you know 3 vials of blood. It all came back 'normal'. I didn't have any facial redness or anything. About 1-2 months later I saw the end of my nose was redder than normal so I went back. There were no other signs yet. He said right away he suspected rosacea and I had already suspected that too. He prescribed metrocreeam because he thought the gel would dry my combo skin too much. I went home in a daze! I knew it, yet I didn't want to admit it. So I consider myself lucky to have gone this early. But I truly suspect it was just waiting because in the Bahamas 4 years ago, after a shower, I blamed the change of water for the pinkness on both cheeks. It went away in about 10 minutes and I didn't think anythng else about it. It never appeared after every shower.

      I'm thinking that some foods likely triggered mine, too. I love coffee (hot) and I eat scads of low fat yogurt. Some lists are saying neither are good. Now I'm almost afraid to eat anything!! I think I've lost 4 pounds in week!! Do you find food triggers yours too? I am compiling a list of things they say are okay, and then almost afraid to add anything to 'try' it for fear of having more rash. Oh boy, I hope I don't sound like I'm whining. I'm really not. I consider myself one of the luckier ones right now. Of course this could all change in a heartbeat. It's the not knowing isn't it.

      Thank you so much for all the information. I had gone to the big forum but this one seems to help a lot better for me as you are all people who've been coping with this much longer than myself and can suggest things. It's most appeciated.

      Please keep in touch with me.
      Linda

    • Get Well Soon!

      From RenateFr June 22

      Hope you feel better soon!

    • Ray of Sunshine

      From RenateFr June 22

      You are always my sunshine! What would I do without you???
      Hugs!!!

    • Hug

      From TooSleepy April 9

      Thanks for the prayers and encouragement. They're definitely appreciated!

    • Hug

      From TooSleepy April 3

      Thanks so much for the encouragement.

    Read Hugbook

  • Support Groups

    • Close Narcolepsy

      diagnosed at age 43 with narcolepsy with cataplexy: daily battle EDS, daytime sleep paralysis, nighttime hallucinations, insominia, and full & partial cataplexy attacks

    • Close Rosacea

      went undiagnosed for 30 years; as a result, I have bad scars and ocular rosacea

      Treatments

      MetroGel Working / Worked
      worked with first usage, still does - use twice a day
    • Open Interstitial Cystitis (IC)

      finally diagnosed with IC at the age of 43 after battling this problem since young child

      Treatments

      Baking Soda Working / Worked
      Macrobid Not Working
      didn't work and eventually became allergic to it after several rounds of it
      MSM Not Working
      have no clue, just take it for health
      Pyridium Working / Worked
  • Friends


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