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About rubytuesday

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  1. I have been diagnosed with POTS, dysautonomia, orthostatic hypotension, CVID, EDS III and SICCA (among other things). Every orifice of my body is extremely dry and uncomfortable. My opthamologist (who performed my video laryngoscopy) prescribes Restasis for the dry eye and my otolaryngologist prescribes Evozac for the dryness elsewhere. The gyn prescribes estrogen cream for yet another area. Due to my bone loss and immune deficiency/having had a pituitary tumor removed, steroids are not an option for me. I am on weekly infusions of gamma globulin for my immune deficiency. I have had trials of
  2. My heart doctor referred me to Dr. Blair Grubb at the University of Toledo Heart/Dysautonomia Center. It is not that far from the Cleveland Clinic. He is not far from Cleveland and is excellent in his field. He also diagnosed my orthostatic hypotension in the 2 years of treatment I was receiving as the POTS progressed.
  3. I had two tilt table tests. I did not pass out in either (and up until those had only passed out once in my life). After the first test, my cardiologist ran a 24 hour and then a 30 day event monitor. He diagnosed me with neurocardiogenic syncope (even though it was 'near' syncope). I began various trials of medications/salt/hydration, etc. and none of them seemed to help. A year later, he wanted another TTT but performed by a different cariologist/physiatrist. He said the HR rose and the BP dropped consistent with a positive result even though I did not pass out. He said it could well be that
  4. I just had to add my 2 cents as far as 'autonomic tests normal'. I have POTS/dysautonomia/neurocardiogenic syncope/orthostatic hypotension, BUT, sometimes my blood pressure can run high and/or normal, and more times than not, my heart rate is normal. It is infrequently that I will burst out in an outpour of sweat to such degree that even my hair is dripping and it looks like I'd just got out of a shower. That is the nature of dysautonomia. Your autonomic nervous system can function perfectly fine but then go wacky. My cardiologist suspicioned POTS that was resistant to traditional modes of tre
  5. The TTT is one of the first of many tests that I had. I had never completely lost consciousness before then just 'near syncope', very near syncope that would drop me to the ground. Apparently I fit the symptoms but never passed out. I was not given any ntg. I had a 24 hr event monitor (had requested 30 day event monitor as I was not feeling symptoms on a daily basis when things first began). I had never passed out before in my life either. The 24 hour event monitor was normal, but as symptoms persisted, I was put on the 30 day event monitor and within 2 weeks, I received a call from the cardio
  6. I see Dr. Grubb at the University of Toledo. He specializes in Dysautonomia among other heart conditions. I was referred to him by my cardiologist in SW Ohio. It is a hard 5 hour drive for us and he, too, had a year long wait list. At the time, summer was fast approaching. It was the worst summer in my life. I truly thought I would be dead before I ever got to see Dr. Grubb. When my cardiologist saw me again in follow-up 6 months later (and to check if I had any success in getting in sooner, as you can keep calling to see if there are any cancellations so that you can be moved up), he was move
  7. Has your ENT run an endoscopy and collected a specimen for culture and sensitivity? I suffered from chronic and acute sinusitis and ultimately with osteomyelitis in my sphenoid sinus. The culprits were organism/fungus seen in severely immunocompromised people. From that info, I sought an Infectious Disease specialist to see if perhaps I needed one. This was all prior to my POTS/dysautonomia although I have always had orthostatic hypotension. The ID ran multiple tests on my immune globulins and other components of the immune system and vaccine challenge tests. Turns out I have Common Variable I
  8. Hi, Gemma. You have the right attitude in picking yourself up and dusting yourself off after that ordeal. My pacemaker was put in in Dec. 2012. It was put it at a hospital far away from home (my cardiologist referred me to a specialist in dysautonomia there 1 1/2 years prior). I had my first pacer check done at the same hospital in Mar. 2013. Then with that specialist's permission and investigation/coordination on my part, I was able to get the device monitoring done by our local cardiology group. The first time was done last Fall by the nurse. Monday I had another 6 mo. check only this time b
  9. I'm not sure if I was mis-diagnosed or if things progressed over time. Mine began maybe once/mo. with near syncope. The third episode was much worse and landed me in the hospital where I underwent a gambit of cardiac tests and an MRI/MRA of the brain and blood work to rule out other things. All but a B vitamin deficiency were normal. Then on to a tilt table test--never had syncope but was in pain and the room was cold (hard to re-create a warm relaxing environment under those circumstances) and a 24 hour event monitor that later became the 30 day event monitor (that I requested from the get-go
  10. Employers have a way of getting around that by going from great evaluations to suddenly one that leaves you scratching your head and feeling scared for your job security when you've not changed your work habits (only bettering them by the gain of more experience). Then it looks like the ball is in your court to either disprove their claims or to prove their breach of FMLA. It isn't fair. To them, it's business and profit, bottom line. When my employer blindsided me once, that was the point my attitude about my job changed. I had worked there for over 20 years but at that point, it was no more
  11. Hi, IceLizard. I was just at my cardiac specialist in dysautonomia today (the one who inserted my pacemaker). I was describing incidents to him in that I have no fever (but I run low temps typically) but I abruptly feel really warm (not hot flash--I'm post menopausal and those were/are definitely different) followed by profound weakness, muddle-headedness and profuse sweating to the point sweat is dripping off of my hair, off of my face, my clothes drenched thru to the point of needing placed in the washer to cleanse out the sweat and not sit/mildew as soon as I am physically able, and require
  12. I just wanted to say that I can relate to your situation as one who had taken decades to have been found to have orthostatic hypotension, autonomic nervous system failure, common variable immune deficiency + complex immune deficiencies, delta granule storage pool disorder, POTS and Ehlers-Danlos III. As certain conditions can only be verified by examination and a combination of history, family history and such, and some blood tests unavailable or uninvented back decades ago (when other tests were not proven) and with the immune deficiencies, blood tests could read negative but be false negativ
  13. Mestinon made me deathly sick. I was tied to the toilet at both ends. I was also trying to conditioning with physical therapy when I was taking it. I was so embarrassed. I would be retching and hugging the commode, and I could feel the BP still tank and have to lay down immediately on the closest bench or floor before syncope. They'd always check the vital signs and oxygen level and they would make me stay til things came down to a certain level. Then they would want to call somebody to drive me home (when I drove my car in). My heart specialist finally took me off of it after about 3 months o
  14. I was originally diagnosed by my cardiologist and PCP (internal medicine). But my cardiologist also had me see a neurologist to rule out neurologic defects. The neurologist told me my exam was negative (but suggested Mestinon to treat the dysautonomia). She did not relate any need for me to see her beyond the consult (perhaps as I was in the hands of a cardiologist who had already recognized what was happening to me?). I agree that either could treat you, but it should be a physician who is well versed with POTS and dysautonomia.
  15. Mine started suddenly (I can remember when) and was gradually progressive. I put 'combo' of causes as I have EDS, chairi I, CVID, orthostatic hypotension, and we can have false negatives on autoimmune tests, and once on gamma globulin we can have false positives and false negatives).
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