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kay1964

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About kay1964

  • Rank
    Advanced Member
  • Birthday 05/16/1964

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  • Gender
    Female
  • Location
    South Carolina

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  1. I live in south Carolina and i got it based totally on pots,even though i now know i also have heds.I first applied was denied than obtained an attorney.from the time i applied to getting it a year and a half.
  2. Hi circuscat, I agree with katybug,i have similar story to yours that's why I spend some of my time on a Inspire forum.I at 50 got my diagnosis of HEDS which is elhers danlos III. Dr Blair Grubb Finally diagnosed my condition behind my pots and dsyautonomia.Vanderbilt university in nashville Tenn,in 2007 diagnosed my pots and dsyautonomia.Dr Grubb in Toledo Ohio in 2014 diagnosed my heds.Because i do suffer with pots and dsyautonomia i love my dinet.org forum,its very informative. But because i also suffer with heds i find inspire informative for that.much prayers to you to find answers and support,you need.which ever forum or both will provide that:)
  3. Becia, sending lots of concern thoughts and prayers your way.
  4. Story, I too have suffered my whole life, symptoms have progressed through the years.because of child bearing, surgeries, to stresses of work, and stresses of life.unfortunately I was not aware of how sick I was at times and pushed beyond what I had and caused more damage. But fortunately I knew through all my symptoms and diagnosis and test we still where missing something. The sleeping issues have always been there, last 6 to 7 years symptoms have developed into these surges.remember too menopause brings about for some worsening of their symptoms. So the last 7 years I have the shadow of menopause right with me.:(I think at this point agin my treatment plan is to deal one at a time with my primary issues that I definitely need some relief on.I too must have visited the same town you where in I went long way around too:) thank you for asking and sharing.
  5. Hi story, no did not have to do tilt table for dr grubb, because I have had four since 2007 all four never changed they showed i did have pots.how ever that was always one of my symptom as doctor Grubb said, my primary problem was heds.he did not have to order or do any test because before going to dr grubb I brought all my records with me.he knew rite away I had heds.my doctors from my cardiologist, to my neurologist, to endocrinologist, and my gastrogoloist,gave me my records from all the test they performed, along with dr raj records from vanderbilt university. So I had alot.dr grubb did perform the Beighton test and from my score I was definitely diagnosed with heds. Plus with my history and family history it was obvious. I go back to dr grubb in 7 months.I can't say enough about him and his staff, wonderful. Worth the trip, so glad to have him as my doctor:) however still have to have my other doctors at home in place.he is a very very careing person and physician:)and by the way the ten hour trip wasn't bad, I actually handled it better than I thought I would. Hope you find what can help you to rest and sleep better. Its always trial and error.sleep is so needed and precious for us yet so hard to get.that was my number one complaint to dr grubb, my nite time surges. For now trying bystolic if it doesn't work, then he said next clonidine or possibly the agent doxepin.we are only dealing with most critical issues for me one at a time, was his recommendation. I'm so sensitive.
  6. Story,i recently just got home from my doctor vist in toledo ohio.i too did not tolrate betas,we are trying knew one Bystolic 2.5 once a day, (i cut even that dose in half)i am very very med senative.Dr Grubb says it is a relatively new beta-blocker that is most beta 1 selective agent currently made has far fewer side effects and dose is once a day.also for me it is pill form i can cut into.no extended release.dr grubb said take as i could tolrate it.so far i have been doing ok i don't take it everyday,but what i take is helping surges at nite and my increased heart rate.so far it's the only med i can take in my many med collections through my life long illness of heds and pots.
  7. Thank you blue, really means alot to me.everyday is one more day behind me.
  8. Thank you raisin, God Bles you too.Thanks for your healing words.
  9. Thank you, I know time will be my friend but today my pain of loss, is great.Me and max had talks he was going to out live me.I know that sounds crazey, but my illness and symptoms have brought me too such pain and helpness that on bad days I felt my time is limited.My max's comfort is what pulled me through.Suppose to go to Dr Grubb, in sept don't know how my mind can focus. My family is grieving as well and they like me loved him so much.agin thanks for taking the time out to express your condolence on my loss.
  10. Words are so hard to find to describe my max.He was a resue. I'v had him since he was 8 weeks old.His legged was injured beyond repair, local vet called asked if I good take him.and of course I did.He was a boxer with a tail and his ears still and we left him that way.I'v talked of himin one of the post on the forum, because he was one of my coping skills for my illness with dsyautonomia. He was so in tune to me.everytime I cried whatever he was doing hecame over and had to stay beside me until I was done, even then he would whatch my eyes intently to make sure I was ok.about a month ago when I was by myself I fell and was very disoriented and when I came to of max was there whining, agin watching to make sure i could get on my feet. Every nite he laid at the foot of my bed, on his bed, watching my many trips to the bathroom, always raising his head as I walked by stumbling by, whatching me the whole time.I whatched my beloved max die having my morning coffee and water.he was laying agin besides me and died of heart attack.it happened in four minutes, while I heard him take his last breath.my beloved max was 9 years old.so thankful I got to have him for the time I did. He will be so missed. He was gentle, he loved children, he was funney, he was loving, but most of all he was mine.love you max:(
  11. Fifty, and waiting.Nope still sick.
  12. Hi, faintinggoat my appointment is on the 12 of September.I to tried florinef but could not tolerate the more headaches that it causes for me.I have had pots all my life i now know.from being diagnosis with mitral valve, cfs,to panic attacks, to hypoglycemia, to low levels of vitamin d, tmj, servre dry eyes, list goes on and on.I went to Vanderbilt for my confirmed diagnosis, in 2007. That was helpful for that, but not for long term treatment and what i overlap. I have known my dsyautonomia runs in our family no one has stepped up to have it diagnosed. I really believe we will be looking at elher, as possible primary.one issue that stands out for my family also is visions issues. Such as we have high myothia, we have nystagmus, and retinitis pigmentosa, which runs in connective tissues disorders.so aginI'm really hopeful, in that dr grubb can help sort out our illness that overlap each other. Dr thompson in fl was another doctor i have seen he was trying to help sort but he is very ill himself. So for thetrip I will be taking my propranolol, wearing my compression stocking. Taking zyrtec if I need it. Bringing lots of braces. I wear neck one, back one, and wear compression arm sleeves. As well as hand ones. Also my faithful mouthpiece for tmj.and last lots of water, and salt. my gi doctor here is glad and so is my cardiologist, because they are exhausted with me:) we are such complicated patients, and at times I'm sure in thier eyes frustrating one's. There's no quick fix.because of my passing out epsodes my primary care doctor wants me to get a transport chair. For the trip.It's a huge barrier for me.to accept I needone:(agin hopefully dr grubb will help me get my mind to a place of peace and knowledge to better take care of myself. For i have always been the caretaker, now I can't even hardly care for me.best thoughts and wishes for you too! Agin keep me posted on how you do.pack all Ness items you will need to be comfortable for your trip:) oh for brain fog issue write down all symptoms, and all questions. Bring all records even ones you think wouldn't matter it could help. Also pictures if you have them of your condition like blood pooling, flushing, if hyperjoint pictures, what ever your symptoms are.also I will bring a recorder which I do to all important appts. My poor husband can't remember and I can't for sure.that way you can review it later.:)keep smiling
  13. Hi misstraci, I too had test done for Gastroparesis I was able to eat oatmeal. My test showed delayed gastric emptying. My gastrogoloist did not feel the benefits taking the meds would out weigh side effects of the meds.I'm not tolerate of meds.as well delayed gastric causes med build up.maybe meds will help you.test worth getting if you can.I too take zantac when build up is bad.also small small meals.no beef and whatch gluten.
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