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Everything posted by heathmcev

  1. Hello from Vandy everyone! As Kelly mentioned, I'm currently inpatient at the Clinical Research Center which she just returned home from. I'm here until Tuesday (8 1/2 days total). I'll post more about my experience once back home - I'm having a hard time writing a lot from here as I've been so tired between studies (massive brain fog too - my poor nurses have been unbelievably patient with me. They're used to us!!! Lol)... but I'm keeping a journal and good notes. Kelly it was so wonderful to meet you - i wish we had more time to talk in person! My experience so far has been exactly like wha
  2. Fabulous news!!!! I just got approved over the holidays - the judge called my lawyer the day before the hearing offering a deal. There must be some good disability karma for POTSies going around this month!! So happy for you.
  3. Kelly, Sorry you had a rougher day today... I suppose with everything being thrown at your body it's not surprising. I'm so glad you are enjoying working with the staff & doctors. Its nice that Dr Biaggioni is giving you clues as to your results as you go along. Reading about your experience is getting me prepped & looking forward to my Vandy stay next week! Too bad we'll only overlap by one day but it will be nice to meet you regardless. Thanks for posting your experience...
  4. Kelly - I'm going to Vandy this month for inpatient research too - also doing about 5 research studies. Pleae PM me - would be great to meet you if we overlap! I'm currently going thru withdrawal going off my meds for the trip. Not fun! In bed doing research right now. I bet we'll be in many of the same studies as mine are also mostly physiological. I think only 1 med trial. As I understand it, most of the med trials finished up end of 2012 and physiological data is what they need right now... Until they write a new batch of studies for 2013. -heather
  5. Diamondcut, I'm in the same spot as you with bad nausea & bloating and not wanting anything to press on my stomach. I recently got one of the abdominal binders in a lingerie dept to try (I can't do full spanx - get too worn out pulling them up). Its like a tube top that starts below the bra line down to the hips. So far the compression seems to help, which is making me wonder if part of my nausea is from pooling. It may be worth playing around with just to experiment & see how you do. Before this week all I wanted to wear was loose things but when I do need to stand for some reason I t
  6. I've been going or energy work for the last year + 1/2 and it really settles my body down. It hasn't changed the pots a lot but I feel so good afterward that it's worth it. My energy work woman taught me how to open & close some of the chakras in my body to bring in positive energy & let out negative. It's great! I think these types of treatments help me feel more empowered which is huge. Hope you continue to find relief (null)
  7. Count me in. Target is to worst! Even sunglasses don't help the dizziness & nausea from the florescent by lighting. I've had it for 2+ years, so unfortunately it may last a while. Mine is all the time - not just during flare ups. (null)
  8. diamondcut - just out of curiosity, did your doctors say tell you this? I have been seeing so many specialists and floating this and they all scoff at it and say "there's no data". It's so frustrating. It totally makes sense though. They buy that the perfusion issues cause brain fog but are reluctant to tie it to the dizziness & nausea/migraine symptoms. Wish I could wear one of those doppler units on my head while I go about my day so they could see what's going on!!!
  9. I'm in the same boat as Friedbrain - diagnosed with Secondary Adrenal Insufficiency (not an autoimmune disease, but rather a dysfunction of the pituitary for what is, in me, idiopathic reasons). I also have Growth Hormone Deficiency which is also pituitary-based dysfuntion in my case. Both dx'd through an Insulin Tolerance Test. My ACTH Stim test was actually unremarkable - and interestingly my Endocrinologist (who is very knowledgeable about POTS) said that it is common in POTS to get a false-negative on ACTH Stim tests. I was on hydrocortisone for a year (and looked like the Stay-Puff Marshm
  10. I get dizzy reading sometimes. It usually happens when I'm being overstimulated in general - like trying to read in a waiting room with flourescent lighting, which always makes me dizzy. The back & forth eye movement can mess me up. I don't know what to do about it but it's not fun . It may very well have to do with neck issues. (null)
  11. I get an internal shakiness - feels like everyone should be able to see it but I only feel it on the inside. Like my body has electrical currents running through it. Sometimes worse in arms, other times legs.
  12. What is considered a normal vs low pulse pressure? This is interesting... (null)
  13. Wow... bananas - that is way harsh! I'm so sorry you've been dealing with someone like that. And you have major courage saying goodbye to them! Go you!! I had an ob/gyn tell me I needed to get out there because "dating is good for you"... right AFTER I'd just detailed all of my dx's! I found a new doctor... Maybe we should start a sick-people online dating service... illharmony.com? sickmatch.com? Find some hot guys who are also sick & understand?! Only glitch is that who would take care of who?? LOL...
  14. Hi Amy!! Welcome. Hope others with Lyme dx's jump on! Heather
  15. Hi kit, I'm 37 and single. I was completely independent and living far from home, working hard in my career until age 29 when I became too ill. I moved in with my parents for 6 years and was really quite depressed about it -- but who wouldn't be! Realistically, when you can't live and function independently like your peers are doing, anyone would be sad & embarrassed. Like you I've watched my friends all fall in love, marry, and have kids... as well as advance in their careers, and felt very left behind. It was so much harder before I had a dx tho - then I was afraid to tell anyone why I w
  16. freelemons, I used to drink lots of nuun, but it has sorbitol, which I'm trying to avoid.
  17. Hello lovely pots folks, Since there always seems to be discussion over electrolyte drinks without artificial stuff or too much sugar I wanted to share my recent find! It's called Vega Electrolye Hydrator. Comes in little individual packets of powder. Says zero calories, dairy free, gluten free & soy free. Seems to have stevia. I found it at Whole Foods. Anyway - here's the website... http://vegasport.com/sustain/electrolyte-hydrator
  18. I checked every box! I get so bad just walking around my home sometimes that I feel like I'm going to throw up. Can't tolerate any of the dizziness meds either! SeaBands don't help. Acupuncture helps for a few days or so. Ginger candies help the nausea. This is unbelievably debilitating and I wish I could figure out how to tamp down these symptoms... (null)
  19. Lemons, my issues during these episodes are largely spacial. Feels like I'm floating when I walk - have a hard time telling how far the floor is from my feet but at the same time it's like I'm floating (even tho I know I'm walking). My vision can be ultra sharp in that I focus in on things closely (noticing great detail) at the same time that my brain spaces out and tunes out surrounding noises & voices. I lose ability to focus on conversation or things happening around me. It's like everything is occurring on the periphery. I think I end up focusing on a sod infix object or spot in from o
  20. Just echoing katybug - mediation/mindfullness based stress reduction (google MBSR) has helped me as well. Amazing what you can teach your brain hasn't stopped any of my symptoms from happening but when I feel the adrenaline coming on I can immediately kick into the breathing techniques I've leaned and it's helps calm my body down. I took a course at UPenn in Philly. Many major unis around the world offer 6-8 week courses based on Jon Kabat-Zinn's work. Good luck at work!! (null)
  21. Yes!! Me too!!!! Sometimes I say I feel like my brain is in my feet - which I know sounds nuts. Guess its my way of saying I can't think straight - and maybe it's all of the blood that's pooled in my feet making me feel that way. Very detached but not anxious... Spacey, like the chalkboard I my brain has been wiped clean. Like I'm floating instead of walking. Sometimes I get tunnel vision too. (null)
  22. I have low cortisol - but it's Secondary (or Central) Adrenal Insufficiency (caused by pituitary issues) and not Addison's. I agree about getting the ACTH test but be aware that it can give false results in POTS patients - my endocrinologist is very knowledgeable about pots and has found this in several of his patients. He did an Insulin Tolerance Test to determine my adrenal insufficiency. Apparently there is a population of pots pts who have this issue. It's great that you're looking into this tho as you may find you need stress dose steroids when you're sick or injured. (null)
  23. I'm so glad this came up! Not being able to sing like I used to is one of the sad parts of pots for me. I had many years of voice training & performing and now I just get too dizzy & faint feeling! Dana - I'm a soprano too, but get most dizzy now in my head voice, like Linda, so try to sing lower things (of coz my voice is out of shape & can't go as hi now as I used to anyway). I totally agree with the valsalva maneuver comment tho - that's just what it feels like for me. Music is so healing - wish there was a good answer as to how we can be less frustrated by our limitations her
  24. How do you do with up & down/ bending poses? I loved yoga before my OH was really bad but feel like I'm going to pass out now when I try it. Any suggestions? Wish I could find a DVD of all sitting poses!! Lol. (null)
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