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heathmcev

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Everything posted by heathmcev

  1. 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 Marshmellow Man!! lol), then switched to prednisone for another year - but we decided that neither really made a difference in my fatigue levels. I now only take prednisone when I have flu, major stressor happening, or some other event that would cause an adrenal crisis-type thing (aka stress-dose steroid situation). My POTS neuro & endocrinologist say they share several POTS patients with both adrenal insufficiency & POTS, and are trying to figure out why -- so far nothing. My Endo laughs and says he can't figure out how to test the connection without physically getting into the brain... no volunteers there!!
  2. 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)
  3. 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.
  4. What is considered a normal vs low pulse pressure? This is interesting... (null)
  5. 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...
  6. Hi Amy!! Welcome. Hope others with Lyme dx's jump on! Heather
  7. 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 was at home & felt like I had to make something up. Now, knowing what I have, I simply tell people that I have health issues and need my family for day-to-day support. No shame in that. As MomToGiuliana said, we didn't bring this on ourselves! It's been a loooooong road, but I've inched towards caring less and less about what others think of my situation. Especially by our age, most people have had major life "bumps" whether it be parents being ill or passing away, or kids with health issues. Having said that, I do hate that I haven't been well enough to meet someone... like katybug, i'm just not well enough to date. stinks. I moved into my own apartment in 2010 just 5 mins from my parents but I end up staying there whenever I have a crash. I just came back to my apartment after having to spend a month at their house! They also help me a ton with my dog, who I often don't have the strength to walk. My mom drives me to most of my Dr appts and buys all of my groceries... so I'm right there with you. The biggest help to me in this situation (and I'm going to sound like Oprah here! lol! ) has been to "cultivate gratitude" as they say. I am so BEYOND grateful for everything my family has done for me. If you want to get me crying, just ask me everything they've done for me and it's waterworks! I feel very guilty for what they have sacrificed and put off "until I get well" (whenever that may be!). That immediately seems to throw any embarrassment aside. I try to focus on them and my support system. It's all a very hard pill to swallow... for sure. But I think it would be just as tough in any situation. If I was married I'd probably feel guilty about my spouse having to help me, etc... Feel free to pm me anytime if you want to vent, commiserate, etc!
  8. freelemons, I used to drink lots of nuun, but it has sorbitol, which I'm trying to avoid.
  9. 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
  10. 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)
  11. 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 of me to stay "grounded". Like peregrine, being led by someone really helps. Mostly these episodes happen in places like the mall, a busy street, a hallway in an office, etc. It's so disconcerting... (null)
  12. 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)
  13. 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)
  14. 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)
  15. 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 here & keep singing!! (null)
  16. 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)
  17. It happens to me with Drs & nurses taking my BP, as well as wrist pulse. They always joke that they know I'm alive cause I'm standing there talking to them it usually happens when my BP is super low. I have hypovolemia & typically low bp. (null)
  18. This also brings to mind the hearings on Capitol Hill over the winter on women's reproductive issues. It was heard in front of an all-male panel. Without getting political, it shows a very basic bias & naiveté. My personal experience has been a lot like kayjay's. It took me 5 years to get a diagnosis of POTS and many eye rolls from Drs who just wanted to dx me with depression & anxiety. I had to fight to get answers on my own, until I finally landed in the right Dr office. I am so thankful I found that Dr - otherwise I might still be just treating "depression" today!! (null)
  19. I know some Lyme tests give a lot of false negatives... what are the most reliable tests to get for people who suspect it or want to rule it out? (null)
  20. I'm Hyper POTS with low BP, and am hypovolemic. I agree that it may be helpful to find out if your daughter has low blood volume to further tailor treatment. You could talk to her neuro about doing a blood volume study. I also have over-dilated blood vessels much of the time, contributing to my low BP. Knowing both of these things has helped me understand my illness even if I still have a long way to go to feel better! What has helped me most is a low dose of mestinon, which raises my BP enough (to a low-normal range) so that I don't feel like I'm going to pass out every time I stand! I'm also on florinef to help raise blood volume. Being super sensitive to meds makes starting out low and slow really important... I'm always cutting pills in halves and quarters and building over weeks and months. I hope you all can get more specifics and find things that help!
  21. Really interesting Wendy! I was mag deficient years ago but got really nauseous from the supplements. Maybe I need to get retested & think about a better way to take them. Other than after a meal, is there any good way to buffer the nausea? Also - which type of magnesium did you take at the movies? I always avoid theaters but miss going and seeing things on the big screen! (null)
  22. Hi shoegal, That's awful. So sorry you had that experience! It's bad enough when it takes so much effort to get through these long appointment days. If it makes you feel less alone... about 7 years before I was diagnosed but starting to have autonomic symptoms here & there, my then-PCP told me - with a sarcastic wink & a nod - that I must just be going thru early menopause when I asked her why I was sweating so much all the time! "hot flashes" at age 26!! I found a new PCP hang in there... (null)
  23. Hi LindaJoy, I'm pretty sure this is the same Dr I was thinking about seeing last fall. If so, he looks at all neurological illnesses as having a biotoxic cause. I never got as far as the packet, but did have a phone "interview" with his practice manager. It felt like he was sussing me out because he suspected I was an FDA informant or something. Maybe I was asking too many questions!!! LOL. The doctor offers a specialized treatment (some kind of light therapy) in addition to the biotoxin screening that is not FDA-approved yet. One of my integrative Drs told me that there are treatments in Germany and England that are similar and in the end if I decided (basically out of desperation) to try this it might actually be cheaper to fly to Germany to do it than to go to this guy becuase of all of the crazy costs & hoops you have to jump through. NO doctor should require patients buy his books or DVDs!! Major red flag. In the end I ran from him too! I am curious about his testing protocol as well and agreed with my doctors that we could mimic much of what he did here at home in a safer more transparent way. I also had the feeling they were preying on the sick and desperate who, like many of us, have been through all of the typical western protocols without much luck. I don't know anything about the VCS test but hope folks here can help figure it out & will post what they find - sounds interesting!
  24. Naomi, were you lying down for the test? It would be interesting to have this sort of test done sitting or standing since it seems blood flow to the brain would be at its worst then... And would give a clearer picture of exactly how much the brain is affected. I wonder if it's even possible to have it done upright? (null)
  25. I have terrible car sickness too. On a bad day I get "car sick" just walking around the house! lol. Mine is always way worse when my symptoms of overstimulaton are acting up (dizziness, sensitivity to light, sound, etc). All of my vesibular testing came out normal & was diagnosed with vestibular migraine (which I think is just part of POTS). Have tried SeaBands which are the acupressure wristbands, but they usually don't help that much. Chewing on candied ginger can help. Ugh... not fun. Wish I had more ideas to help!
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