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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 tricky to get that artery in your wrist to 'give' it's blood - but once they isolate the artery it's a quick two second test - mine was not painful. You may hear stories otherwise if someone hit a nerve there etc... but most of the time it's just a game of patient waiting as they get that needle in the right spot. I've only used the overnight oxygen twice - first night was hard because I despise things on my face - to the point of no hats, no sunglasses or any glasses etc... But night number two I fell into a deep sleep and didn't wake till morning - highly unusual for me to feel refreshed in the a.m. but I did! The sleep studies if done at a good place will be good for information for your doctor if warranted ~ Waking up with a headache is a classic sign of hypoxia in the night - of course there are other possible reasons - but it's often the case that low oxygen at night can have you end up with a whopper of a headache... So maybe get that overnight test done- or a sleep study - maybe gases down the road a bit if warranted - and really I think a nasal cannula is not bad - the noise on the concentrator at the bedside is a bit annoying at first - yet it is a background noise that will likely lull you to sleep once you find the O2 to be helpful.....Blessings to you! Oh and I don't use continuous 24/7 O2 yet - just at night (nocturnal oxygen use) yet my numbers would allow Medicare to pay for a portable use of 02 for the 24/7 if I did need it/desire it/or the doctor says I should. I will have PFT's done in a month which are pulmonary function tests to see if the low oxygen has anything to do with lung function at all - he doesn't think so ~ I think he thinks it's possibly my overweight body to some degree - I have other ideas as well - so time will tell how all this roll's out - good luck!
  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 ~ like 'follow-up as needed' or in 6 months etc... it will usually say in the discharge summary. It's not an easy job to keep hammering away at scheduling the tests - getting the results to him or making sure the test facility does that - doing the PT thing as asked ~ and making sure you understand what the relationship will be between your rheumie and he for your best health. So bottom line I'd go with your gut - take what's helpful - discard what's not - and do not get discouraged if things take awhile....and call and speak with his 'right hand person' whoever that is at the new facility so you feel in control and knowledgeable about what your plan of care is. I saw him on his last working day at the old facility in OH - and that was one tired man. I hope he feels better these days since the move - his help on my path has been invaluable and I don't think he even knows that!
  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 - but my concerns fell on deaf ears. Because of the low pulse ox tests - I asked for blood gases to be drawn - and they showed day time oxygen level of 55% in the blood - that is the threshold for Medicare to pay for continuous oxygen therapy. You are about good as dead if in the 40% range - not good - a real panic situation. Now I am on oxygen at night at 2liters per nasal cannula using a concentrator machine at the bedside. Works great and is not causing claustrophobia like cpap did. There is a known placebo effect with O2 - and I did feel like I had the first night in my life of refreshing sleep. So we'll see if over a months time if there's improvement in pain, fatigue and cognitive impairments.... I am grateful this was found out - trying to stifle the feelings of pure frustration that "I TOLD them SO!" Why they wouldn't address those low pulse ox concerns right at the time I mentioned....why suffering needlessly for 2 more years -- blah blah blah I choose to be happy that at least I have one thing figured out that may be helpful to quality of living - Blessings on your own journey at Mayo - may they find out what best will help you too! Who did you see in Cardiology? I saw Dr. Lyng in pulmonology for the oxygen concerns who was good - my visit with cardiology was not enlightening at all however ....Dr. G was who ordered the overnight pulse-ox studies ~
  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? what is going on that no one cares to do something about this too?' On and on - to the point I have to defend mildly saying my doctors do care and are skilled - just not as fast in the doing part of things - I have to stay on them. He's so not impressed with my team that I carefully put together - it seems doctors have to earn his trust and belief that they have our backs. So I'm up to one year since seeing him last and my team of docs are still not done with all he wanted done - some things I haven't even mentioned to them yet .... because it just takes time - Anyway for what it's worth he's a good man - and seems very honest and straightforward - he's got little time or patience for bad patient care provided by other doctors..... funny how every single thing I've read on my studies that alarmed me - but was ignored by the docs who ordered the tests - truly alarmed Dr. T too - so of course I like the way he thinks LOL.... If your care providers show they are at least trying - and have follow through on results you obtain with further diagnostics or a treatment plan - he will give them the pass - or tell you who you might best be replacing. It's great to educate him as well as to who IS on the ball on your team - who IS open to EDS specific treatment regimens - so he learns who he can trust as doing a good job ... so many people see him from afar - it's helpful to build a network of on the ball docs for us...
  5. I'm in the weeds with pulmonary things lately. Began with a quest to find reason for cognitive impairment - which lead to two overnight pulse oximetry studies, which lead to finding I spend a lot of my sleep time in the 80's rather than desired at least 90%.... Had failed cpap 2 years ago - but apnea was mild so didn't think much of it - neither did the pulmonologist. Next I told the guy about memory, fatigue, pain and slowly rising TCO2 levels on my every 3 to 6 month lab profiles (part of electrolytes) ... from 28 up to 31.... I asked for blood gases and low and behold they were what I'd call a mess.... Last night was first night on nocturnal low flow O2 at 2L. per nasal cannula. But now I wonder if I will need O2 continuously as my Pa02 was only 55% and my SaO2 was 90% - everything else was wonky as well - ph of the alkaline range I think 7.47 if I remember right - add a little met-hemoglobin and a little carbon monoxide - a few points over normal and it's crazy frankly. So on the one hand I need to fix the acid-base issues - and then the other problem is the low oxygen levels per blood gas testing (finger probe was 95% sitting in the office). I know immediately they want to blame obesity for hypoventilation syndrome type stuff - but my blood gas CO2 was not out of the normal range - the bicarb mildly above normal - so criteria for Obesity related hypoventilation is a high CO2 in the blood in the daytime - and well mine? That was just about the ONLY normal thing.... So while none of this is likely helpful - the take home message is - if you have a hunch persist persist persist with your clinicians or find new ones - because in the end I brought all this knowledge on by 'not' ignoring subtle signs on labs and such and not taking 'possible mood disorder, pain or worse sleep apnea' as gospel truth - I knew something was 'not right' and would not allow anyone to push my symptoms off on mood and pain - low and behold we got a little surprise on those gases ... so bless the team for listening to my complaints and doing the best they could - it took coaching on my part - but we may have found a significant player in my symptom set...
  6. Sounds like its time for a sleep study .... Could be some obstructive apnea or central apnea or a mixed disease of hypo ventilation and sleep disordered breathing - some have both types...complex issues... It can cause fatigue, cognitive impairments and poor sleep puts you at high risk for serious heart issues and other things like strokes....maybe an overnight pulse oximetry test would be a good start to see if your desat'ing in the night - just the finger clip thing... I am in the midst of all this stuff myself - feel better!
  7. Used a Blendtec for 2 wks & returned today....(BB&B w/ 20% off) - went to Costco today and got the 5200 Vitamix for $379 instead. It feels huge compared to the nice compact Blendtec - but I had a weird leak issue with Blendtec - so it had to go. Vitamix was about $50 bucks more but I doubt it would ever leak out the bottom. I use a fresh squeezed lime for nearly all green smoothies to brighten the taste...plus add chia, flaxseed meal & brown rice protein powder too sometimes. Bottom line I am not getting any younger and a machine that purées could come in handy (hope not but you never know)....plus I am a cook so it's just easy and fun to use daily. I haven't lost any produce because of spoilage in my frig Cuz if its getting ready to toss I throw it in a smoothie instead - saving me as a single person a ton of money. I was just not able to eat the variety of foods I knew I needed to eat daily with any regularity due to fatigue issues...so now I still shop the rainbow but blend things everyday for all those nutrients and virtually no labor involved. There's a learning curve to get through on many levels from amounts, to taste and texture, learning the machine, your favorites, your personal digestive needs or issues.... But while I cannot afford it I got it anyway thinking it was just another "doctor" bill & hopefully it will improve my health somehow.... So it's a personal decision and if you buy at Costco or Bb&b you have the choice to return indefinitely..
  8. Hi. I have SFN & itch like crazy. The vascular docs thought it was varicose vein related but I do not. I recently clawed myself up all over and was put on steroids to make this rash that developed go away...I hate prednisone but I was bleeding everywhere from scratching so had to do it. Not hives though...just itchy skin on legs that gets red dot like bumpy rehash then itching spreads like wildfire!
  9. 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. So I wondered why is that - the doc did a repeat MRI and also did an overnight pulse ox study. As luck would have it - I had bilat max. sinus infections and probable pneumonia - the night I was to have the test completed. I never went over 84% the whole night - even with a ton of coughing jags. My primary was distressed and said, "I don't care how sick you were - no one should be 84% all night long" So I was upset because I told the lady I was very sick when I went to take the oximeter home - she wanted to call a cab for me as I was so sick - I asked, 'shouldn't we just wait as I'm so sick' - she said no just do it - so I did - and now I'm told I need to repeat it - at my expense. Then it's odd - why wouldn't they just repeat the whole sleep study and have me do a retry of cpap? Why spend this money on a pulse ox overnite test again? Why not just do a fresh set of PFT testing (mind a few years ago was mildly abnormal - they thought maybe because of my overweight status) Then my doctor awhile back last year said he didn't put stock in pulse ox readings on patients with orthostatic intolerance - which I do have. So I don't know what to make of it - I went off pain meds to fix the brain issues and that didn't do a thing to help. So now we find this 84% all nite pulseoximetry test - but I was sick - maybe it's not that bad - but I bet it is... I guess I would then have to get yet more testing or just hear the doctor say, "well I don't believe those tests anyway" - meanwhile I get dumber everyday --- My MRI has the white spots in the brain - but the radiologist chose to address them as 'normal for that age group' - those guys just crack me up... areas of ischemia are not normal period - unless you have a reason for them that you consider valid.... I have borderline DM, high blood pressure and am overweight... small fiber neuropathy and hypermobile EDS. So that doesn't tell you much - but I thought I'd write to let you know I too have pulse ox issues lately - will have the repeat test done on Monday... G'nite! :-)
  10. I fully encourage dabbling on any site you feel like dabbling on. I am too in full support of learning through books, videos and any other means available like medical libraries. I dislike policing of who should go on this site and when and who should go on that site and when. I understand that suffering is suffering and as much as people may like to compare and some even 'wear' their dx like a badge of courage to me it's 'all the same' - a human suffering is just that. So in this day and age whether you spend your money on insurance copays or entirely self-pay - whether you 'have' this or don't 'have' this the bottom line is you are responsible for your own health to the best of your ability through whatever means you find helpful. Feel free to 'clog' up any forum you like - if the info is helpful take it and run with it either to try new things or find a clinician who will delve deeper .... Many disease states and disorders do have overlapping symptoms - and not each symptom group will fit in perfectly to one or another... people are people period. Labels don't change that. There could well be a bigger picture or continuum that we haven't begun to look at yet. So if a common trio is EDS, OI and Chronic Fatigue issues or even ME - so be it! If another trio is EDS, OI, Mast Cell - so be it! It could be a mere observance that clinicians and people can speculate on, act on, etc....or it could be hitting the nail on the head for life changing treatment regimens. A disabling disease state shouldn't hopefully be in people's minds as carrying a hierarchy - like "we" are sicker than "they" so don't go messing around in our forum.... You never know how peoples coping mechanisms can be strengthened by reading and absorbing people that 'get' being disabled from living a prior healthy state...no matter what the cause. And if you do find you have POTS and that CFS/ME or neuroimmune disease fits through deeper inspection - thank God once again for the ability to research such possibilities to improve states of health. Often the sickest of the sick will find their way to support on the forums of the internet .... no longer does housebound necessarily mean total isolation....from cancer to ALS to dysautonomia and neuroimmune problems and fully beyond - if you have an issue learn what you can and run with it - you may achieve better health and in turn help others who really need it.
  11. Just throwing this out there - maybe you'll find as I did at Mayo that I didn't even need to be offered a work up for mast cell stuff ~ the doc simply asked if I did much flushing - I said my whole life there's been times where I did and times where I didn't - but yes I am familiar with it - then menopause came and went - I get flushing still - but the cause I am clueless too. But as I have EDS, OI, SFN, baseline of sinus tach and problems with functioning/fatigue and cognitive issues - was offered the treatment for Mast Cell stuff. No mention of more labs, or 'causes' if it is Mast Cell - none of it - but simply a treatment regimen offered - short and sweet. I haven't taken them up on it yet - maybe a bit of a doubter ... I mean flushing is the least of my own personal issues - but your seems extreme - might be nice if they'd just extend the 'cocktail' of meds to you - hope you feel better soon.
  12. We are the one's that are having our issues with health and so we see things through that lens - that does not mean we are self centered and heartless. The thing that gets me is that we have to seemingly cater to or tip toe around 'others people's feelings' and lives because of our own weaknesses that are just part of being human. So when I feel the worst is when I have to pull it out to do my 'explaining' in a way that helps the person not to feel slighted. Over the years I wonder then am I just simply too sensitive. Like should I just be short and sweet and not care so much what others think. And cut others slack too when they hurt me and just leave it all alone. Like in your situation - what would have made a difference - calling her daily 3 days prior explaining that with the up and down nature of your health conditions being a 'norm' you are now in a 'down' so while you'd like to help you know it's probably not gonna happen? Like keeping the other person hyper-informed of your condition so that they clearly do not rely on you? Then call repeatedly keeping her up to date to the last second - where you finally say, "yep just as I had suspected I barely have enough energy to think about the things I need to do - let alone do them, so sorry I cannot watch the kids"....... My mind's thoughts all compete for attention: being angry that they are just so 'dumb' about it all even though you've educated them, being angry at myself for having such a 'dumb' illness, self-doubt in maybe I simply don't articulate the situation clearly at all, doubt them and most of the human race for having any caring or warmth at all on a bad day, wanting to hole up and be anti-social as social outlets allow suspicious people to give side-long glances and ask probing questions that are inappropriate if not embarrasing. I feel for you - I truly don't have the answers - but I'm sorry this happened and know you would have absolutely helped this person out if you had been able. And sometimes just regular life stuff like moving is overwhelming let alone have a chronic 'energy loss' issues on top of it all...but they are blind - truly blind in 'their need' - heaven help us all!
  13. If you taper with a doctors blessing that's great. There are couple well known taper regimen's on the internet from fine psychiatrists as well. The thing people need to be aware of is that the tapering way of discontinuing the drug from long term use is not optional. There's been cases where people stopped the med cold turkey or with a daring taper and thought they were off scott-free from any symptoms - till about day 11 if you can believe it. The half life is so long that some people do not begin to even get withdrawal symptoms till that late in discontinuing it. At day 11 with the shakes and the whole cascade of withdrawal the people could have gone into siezures. But the doc simply told them to 'take your Klonopin' and then he began a taper program with the people. You can most likely be fairly relaxed in this - there is no hurry - you are working toward one of your goals, you are doing it with a doctors blessing hopefully just in case you run into any unforeseen snags, and the taper can be very very slow so you maintain comfort. I personally am having a worse time trying to get off of Clonidine - that's tricky with blood pressure issues, rebound etc... so every drug can have it's tussle with the human for sure - not just benzos. Good Luck on whatever you do! And the past is the past so good work on trying to let that part go!
  14. I had it twice in one night about 3 years ago. I will never forget it - it was violent shaking - I forced myself awake out of what seemed like a dark scary place dream at the bottom of a cyclone or some such thing - but the violent shaking persisted after I was fully aware of my surroundings and then left in an instant - I lived in earthquake territory so ran to my computer as I was sure this was at least a 6.5 ~ but there was nothing on the shake map at all - so I was freaked but went back to bed - a little while later once asleep that same violent shaking happened again - scariest thing ever - that time I 'knew' it was an earthquake - so went to the computer and checked - and there was nothing - not a thing. I told my occupational therapist about it - he had theories but none that made any more sense than that night itself. I was truly shook to my core and that experience I will never ever forget. I wondered about maybe a near-death experience in my sleep perhaps? In fact I wondered about a lot of things - since then I recently was in an earthquake - not huge - I think a 4.5 or a bit bigger - and it was milder than my night of terror - same motion and sensation - just not as violent - my guess of at least a 6.5 in 'experience' was probably spot on - so bizarre.
  15. Brain fog, early dementia, mild amnestic cognitive impairment, whatever you call it - I don't want to "forget" important ?'s for my doc tomorrow.... Do you have questions I should remember to ask? Studies/tests I should get? Things I shouldn't discuss? Things you always wanted to know? I am sorta embarrassed as every time I see my doc I am worse than the time before.... My sx's are ranging from varied "itis's" & EDS pains, labile b/p, hyperandrenergic baseline, on clonidine, propranolol for that, multi level severe cervical foraminal stenosis, mild central canal issue w/ cord flattening. Likely CFS, gerd, low thyroid, HTN... BUT why is my brain dying?
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