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comfortzone

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  1. It may be worth investigating further .... the overnight pulse-oximetry test is an easy test to order and to perform... Whether by a hospital's pulmonary department or a durable medical supply company that sets it up - it's basically just wearing the finger-clip while you sleep - the machine then is returned to the hospital where they download the info and print out a graph with numbers. Some doctors do this as a test to see if a more formal sleep study may be warranted. Also the blood gas test is a blood test ~ mine done at a hospital by skilled clinicians who do them often - it can be a bit
  2. I'm not 'in the know' as to who he has with him in Chicago office ~ meaning who his main nurse or genetic counselor is that takes calls etc...when patients have concerns/questions. But it's a fine line he walks as consulting physician vs 'main' personal EDS doctor for you. I don't really even know if it is defined. So you have to 'use' him to suit your needs and follow your gut. So if you need to speak with him or get clarification you just have initiate that and do it. And keep on task to get your needs met. As far as follow up - he will either tell you in the dictation that gets sent to you
  3. I just have to say that the oxygen thing might be key for many of us who have sleep problems and pain and huge fatigue. I learned by use of two different nights of continous pulse oximetry tests. This showed desats to the 70's - over 124 desats per night and overall long periods of pulse ox readings in the 80's while asleep. A couple years back I had a sleep study that showed mild apnea so was ordered cpap - which I failed at - no one much cared of my docs as it was a mild case. BUT I still had desats on record and low pulse ox readings during the titration study for Cpap. I was concerned - b
  4. I have been a Dr. T patient for a few years now with only annual visits - not since he's in Chicagoland though ... that would be this summer but I never made the appt. Finances are sucky now. I love his ability to cut through BS like nobody's business even to the point of rather insulting other clinicians during our appt. He'll breeze through the studies I've had done at other big medical centers and say ALL the things I've been thinking unprompted ... I want to think of him as "The Shredder" - He'll say, 'why hasn't anybody followed up on this? why is this study showing this oxygen level? w
  5. I know on my sleep study I had a few dips down to 72% or maybe it was 79% can't remember - and then back up to the mid 80's... when they titrated for cpap - I guess all was normal. I wondered why it would be that low - if the end result was just "mild" sleep apnea - and the pressure number for cpap was low - again can't recall but think it was 4. I had claustrophobia and after 3 mos of trying - had to quit the cpap. The respiratory therapist said he couldn't believe they even put me on it as the pressure was so low anyway - so I quit using it. I have horribly distressing cognitive issues.
  6. Looking recently over my entire life I've had more episodes than a healthy person for sure - and while bouncing back takes longer at age 55 - thus far I always bounce back. I didn't always know the reason for being bed bound - but I was just 'non-functional' with fatigue being waaaaay over the top. In 2010 while working as a nurse I began sweating in a patients home and took the pulse ox off his finger and put it on mine and my heart rate was 147 just standing doing nothing much - that's when I looked into orthostatic issues and found some vasomotor instability I guess and hypermobile EDS or
  7. Certain combinations of light really distress me - it would be if there was a lot of natural window light and a light was on in the house as well.... it's totally awful for me to experience that light combination - so I rush to turn off the house lights - or close the blinds... been like that forever. Noise is always troublesome as well - mostly things like radios, droning TV's, people overhead in a mulit-level building - I keep my house quiet as I can. I once moved from a totally remote wooded area to a big city place with a train running through the yard - I had major anxiety and rarely s
  8. Not all beta blockers are created equal - and there are so many medicines to control dysrhythmia's it isnt' even funny - so tell your doctor - 5 days of feeling weird and awful is too long. You have given it more than a fair shake and your symptoms seem extreme. Is it possible you have something not related to the meds - such as gyn issues/female hormone issues like an early menopause starting that just coincided with the BB by 'accident'? Is the BB just for 'comfort' and your dysrhthmia's are more just a nuisance and a small discomfort? If so you'd be more comfortable with skipped beats or
  9. It is very much documented that people with joint hypermobility or ehlers-danlos seem to have a lot of POTS going on....in that patient population... Also - hypermobility patients have anxiety as a common feature - and panic attacks as a common feature.... again they don't know precisely why this is - whether it's related to poor proprioception and your bodies not knowing where exactly it is in space - to if it's something else entirely such as genetics.. Just mentioned it because of my doctors that know about EDS - they all give a knowing 'nod' -- but a respectful one -- if you answer 'yes'
  10. Peter Gillham's proprietary preparation called Natural Calm again won awards for the year 2010. This is a magnesium supplement that you can purchase at health food stores or on-line on sites such as Amazon. If you haven't tried it - you might like it. It is a powder in a tall cannister. The idea is to make a soothing hot 'tea' or bevarage if you will ~ You take your dose - say a Tablespoon and put in a mug - then add your very warm or hot water. The mixture will bubble and foam rather furiously at first - stir and soon you will have your drink. They flavor it in a few different varietie
  11. I almost fell yesterday at work - seems to happen more often lately - where I haven't fallen yet - I'm kinda unsettled about not really knowing the reason why. Is it from my joint replacements, did my orthostatic issues kick in because I'm not drinking enough fluids, is it cervical myelopathy from my spinal cord getting smushed d/t arthritis? Dropping things - yes it's like the floors gravity just tripled in strength - stuff gets dropped frequently - and I can't even bend over enough to reach the dang things I've just dropped sometimes. It's crazy and I wish it would go away for you - it's
  12. Thank you for your explanation & encouragement. I'm over it now- until I have to face it on 1/26 (Rheumy Appt). It's all words & mostly Greek to me I think we are ALL searching for THAT doctor you describe. I am blessed to have a smart inquisitive rheumatologist batting for me. My son also has a wonderful ANS doctor. Perhaps we've used up our allotment??? Hugs- Julie I love that you have a rheumatologist that is proving to be rather brilliant in her assessments and observations etc... Truly it was a rheumatologist that initiated my investigation into joint hypermobility. I had ab
  13. Hope you are doing okay ~ Just wanted to mention that as a nurse - forever the machinery spits out these diagnosis by computer and often they have nothing whatsoever to do with the truth of the issue at hand. We are taught to ignore what the print out reads if that makes any sense. In my own personal experience - I had a Top Ten University do an EKG that spelled out the horrors of an enlarged ventricle - dysfunctions here and there..... I made sure to get better control of my blood pressure after reading that - which is always good. But anyway had a whole batch of testing afterward and abs
  14. Just an aside ... my neuro doc had no qualms trialing me on Mestinon even though I have issues with high blood pressure and especially higher blood pressures with standing (correlating with up'd catecholamines). True I do get lows and seem extra sensitive to depletion of my hydration in a day - and to standing long periods... but the baseline is high. So now I'm on bystolic and clonidine -- I'm only a few mos. on bystolic and only on day 2 of clonidine....so far so good - then as soon as the mestinon comes in the mail in a week or two - I'm to give that a try ... The doc said that this med
  15. So enjoy your wisdom filled posts. You are an inspiration!

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