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juliegee

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About juliegee

  • Rank
    Advanced Member
  • Birthday 06/08/1962

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  • Gender
    Female
  • Location
    Northeast Georgia
  • Interests
    I enjoy interior designing, reading, writing, walking, spending time with my husband, son, and friends.

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  1. Hello my name is Sam, and I am contacting you because I really liked a few items you spoke on in a discussion thread or two, and was wondering if you could share a few thoughts on your journey.  I have been having chest pain off and on for a year, daily, and just found out recently what it is ( vasospasms).  I started calcium channel blockers, has helped.  One thing I wanted to ask you about, is how has your journey been going with the vasospasms/chest pain, any better?  Have you found any way to reverse the trend?  Look forward to hearing back from you, and hope you have found some relief.

     

    -Sam

  2. Hi, I haven't been on her in a really long time but hopefully you remember me - You really helped me thru the first few years of My son Kyler's diagnosis. I now have a friend with a daughter that pobably has POTS They live in central PA. I recall something abut you and your son going to Baltimore for treatment. If my memory is shot please forgive me. I'm trying to find a decent doc for them but I didn't like the ones on the dinet list for Pennsylvania. Please let me know where...

  3. Hi Mack's Mom, I just tried to send you a PM, but it says I can't. I hope you are ok. But just wanted to thank you for all the information about MCAd as I was diagnosed on Friday. We are taking more tests to see how far it's gone. I posted a thank you on Friday, but wanted to make sure you knew how grateful I was for your encouragement and concern. Big Hugs to you!!! Maiysa

  4. Albuterol and Xopenex (like Ventolin) did NOTHING for my breathing problems, but did worsen my tachy Your friend's theory may be right on- for him. POTS is a symptom and there are dozens of etiologies- makes it impossible to generalize.
  5. Hi!I am new to this site and am trying to send you a private message, but it says you are not able to receive any! Is there any other way to send it to you? Thanks, Ashley

  6. Bren- One other thought, your signature indicates that you are taking 10 mg zyrtec daily- really? Hope so, as that will help check your mast cells. IF you can tolerate that, maybe add one at night. Doxepin is wicked strong. Great stuff when you need it, but huge guns, when you have trouble tolerating meds. Zyrtec is fabulous- does the job with VERY minimal side effects. Let us know what you find out- Julie
  7. Hi Bren- So sorry. I can't tolerate ANY BB's either- MULTIPLE attempts. I've had all of the symptoms you describe and more- including severe facial parasthesia, fainting, and early stage heart failure. If you have MCAD, or any allergy/asthma issues- BB's are contraindicated and can GREATLY worsen symptoms. Talk to your doc about other options. I'm not sure what your specific HR abnormalities are; but when my MCAD was uncontrolled- so was my tachy. Magnesium can naturally calm that w/o the severe side effects of BB's. If the MCAD is causing the irregular heart rhythms; you'd be better served
  8. You know you have POTS when... ALL of your socks are hospital-issued with a non-skid bottom _________________________________ P.S. You have the cutest baby, Claire.
  9. Too cool. Thanks for sharing Alyssa & MD Country Girl!
  10. I saw you mentioned your husband was in a serious accident earlier this summer. I'm thinking of y'all and hoping things are getting better for him and you. I know Mack is also going off to school--hope all is well with that, too!

  11. Oh, no! if you really want answers "Go ask Sarah." If there's something she doesn't know, she will research it, find others with the same questions, learn all that they know, find the world's leading experts, engage their input, and end up educating them over a lovely dinner Have you shared the work you are doing, Sarah?
  12. http://www.mat.or.th/journal/files/Vol92_No.4_531_4456.pdf Another name for globus hystericus is globus phayngeus. Regardless of the name, this is a very real medical condition. After I miscarried (almost 20 years ago), I remember a lump in my throat for weeks. Perhaps the grief stirs up the mast cells and causes this phenomenon. The latest research points to an allergic response. Symptoms typically reverse with antihistamines. This is also another manifestation of my "low grade anaphylaxis." I have gone for weeks and months with this phenomenon. Antihistamines reverse it for me.
  13. Why not see if an antihistamine helps?
  14. Sorry to hear that I have to say that this has been nothing short of a miracle med for me. Unlike you, I've had NO negative reactions (and I react to everything.) My diastolic dysfunction is apparently gone . My HR and BP are consistently much lower. I sleep great at night and my intractable bowels are loosening a smidge. All good.
  15. LOVE your story, Caterpilly!!! I want my DD to go away too You make me laugh with your decision about WHO to believe. I agree: the doc with the news you want I have another echo on 2/24. My docs think that whatever is causing the disease process in my fingers and toes is also affecting my heart and lung- also full of tiny arteries. This cardio apparently KNOWS alot about connective tissue disorders and the potential complications that accompany them. I've cut out all added salt in my food & cooking, but eat anything regardless of sodium content. I made a stir fry with Szechuan sauce to
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