comfortzone

Thanks - yes I had the catecholamines and they went from 200 to about 700 with standing in a sharp rise.... I take .1mg Clonidine in the a.m. and .2mg Clonidine in the evening... I will ask the doc about a patch - never thought of that before... Isn't POTS one of those dx's where you must have a hike in pulse or heart rate over 30 bpm with standing? I guess I thought I didn't have POTS as this neuro never said I had it. But I would totally agree that in my life I've always run at a high adrenergic state -- runs of PAT, PAC's and short runs of SVT ... heart rate when not on meds hangs around 100 at rest and even with meds if in pain it's over 100 at rest... other times the meds override pain and it's been in the 60's... So does it mean I cannot have hyperadrenergic POTS because my change in HR is not 30 or more? Or are their gradations of this stuff on a continuum - where you can fall all along this line in different spots - yet still be hyperadrenergic? I am reluctant to have a third set of autonomic testing as nothing notable comes up... the breathing, the tilt, valsalva, sweat -- none of it really shows the pooling I feel I have in abdomen and legs - I'm getting a memory work up soon as brain fog doesn't begin to describe what many of my days are with forgetfulness etc... Do you think I should ask Neuro for a cardiology consult about my misbehaving b/p?

I do see a doctor for these symptoms - but I never get a clear picture of what it is that's causing them and should I ever expect them to go away? I am confused about a few things - maybe you can help? One is at age 55 menopause was done and overwith last year. So I wonder if anyone here gets super sweaty all throughout the day - the kind that dampens your clothes, drips off your eyebrows and nose - with light activity and sometimes at rest....post menopausal? Is this something worthy of some sort of workup? I don't know if it's cardiac, hormonal, dysautonomia, EDS related, or borderline DM.... I have never received an answer as to why sweat pours off me - it gets embarrasing - and prior to this - which seems to be worsening (yet it is super hot outside) I was one who didn't sweat say before age 50 or wasn't aware that I sweat... Sweat test was normal... Then there is blood pressure with a high baseline - that even when on three meds - dyazide, clonidine and propranolol - I still get highs in the morning of say 140's/105 ... and sometimes that whole day is high in spite of medicine - other days it'll dip to absolutely normal - and yet some days like today - I sweat a lot and the b/p nosedives - not dangerous but say 88/73..... tonight with over 2 liters of fluid in today it's about 100/70.... hr about 66. New too is chest pain. Happened a few weeks ago lasting ten minutes - then the last few weeks I get flashes of chest pain nearly daily or multiple times a day. I simply didn't think it was cardiac and have had good cardiac testing done in a prior ER visit last year - so I saved the money and didn't go to the ER against my better judgement - was fine - but now I get the pain daily - is this just EDS? Who knows. It lasts only a few seconds and in a flash it's gone as fast as it came... I have SFN that the doc believes is borderline DM related - yet I have generalized joint hypermobility and those folks or we folks get small fiber neuropathy often with normal sugars... The doctor asked me if I get flushing - yes I do. I get what feels like hot flashes and I get big rushes of blood I guess with the first movement of the day in bed in the morning - like a gush in my chest/abdomen... and then randomly in a day might have it happen once or twice... sometimes hardly at all in a week... but it does happen,...regularly post menopausal I hate to sound so dumb - but after a year and a half of lots of labs and testing - I still don't know what the heck I have nor why laying down is the only real reliever of my chronic widespread pain syndrome - I guess it's a syndrome - who knows ... I have pain with movement - my shoulders sublux and my joints hyperextend all the time. I get arthritis pain and joint pain and foot and elbow and neck pain - and back spasmy pain - and pain with standing above all... I was supposed to see Dr. Grubb - but somehow confusion ensued and I never got the appt., even though I sent records from my EDS doctor.... Yet in reading the article nicely shared here - sounds like there's nothing anyone can do for hypertensive people as myself 'cept treat the hypertension - the lows in b/p you just deal with? Is this just 'life' and I need to not ask so many questions - or do I need to demand answers in a nice way -- demand new treatment modalities in a nice way - demand further testing and referrals to endocrinology and cardiology? Is this just what happens when you get older and carry extra weight on your body? I know - too many questions - I just don't know what is important anymore and what isn't ....

If you throw joint hypermobility into the mix - that puts a new spin on sfn as well - meaning many with JHS also have sfn - and they are as yet uncertain as to why - a few theories of the rather common sense type - such as connective tissue/nerves/muscles are all wonky with generalized joint hypermobility - maybe pressure here or there or stresses on this and that - could ruin the cfibers some how... dunno. Joint hypermobility people also respond differently to a variety of medications than you'd expect in normals - more pooling with clonidine is an example... sfn is equated with vasomotor instability/hypermobility too - as well as diabetes and other better known links ... and of course idiopathic as mentioned. Neurontin for 'nerve pain' is the treatment I've heard most often - doses can get as high as 800mg three times a day - it can be a wt. gainer so you have to watch for that especially if prone or overweight to begin with - just watch the scale. Most of the time I thought treatment was really aimed at the causative factor ... but who knows maybe there are treatments out there ... mine doesn't hurt all that bad - more of a feeling like someone is gnawing on my toes and like my arms are tingly/mildly asleep at times - sometimes feet tingle...

By all means do what your doctor says - but honestly I took the 50,000 unit capsules three times a week for a few weeks with no issue at all. Then went down to 5,000 per day of OTC type - that only got my number to 29 so now I take 10,000 a day...I take it with all my morning meds and vitamins and supplements -- did someone tell you to only take Vit D alone? Why did they say to do this? Curious...

Curious - does Dr. G call your EDS "EDS" or does he call it joint hypermobility or just hypermobility? Had you been diagnosed by Dr. Tinkle or Clair Francomano or someone else? Also curious if he accepts 'brain fog' as a term.... I find compression sox almost impossible d/t hand hypermobility weakness/issues - so much so that I quit even trying - last time I had to hop to find scissors as I was going to give up and cut them off! By worst tachy he'd seen did he mean the highest number or the quickest to rise? Propranolol has really helped me alot and I've tried a number of other meds... I began with 20 - then went up to 20 twice a day ... even so my hr can be high 90's now and again while at rest - but I'm pretty random that way with hr and bp both... propranolol will mostly keep hr below 70 which makes me feel better - thus far it's my favorite drug... I guess you can pool more as an eds'er with clonidine - but I take it anyway and it's been fine... I mean I do get abdominal rush in my belly in the morning - and OI with standing for prolonged periods - but I'm not nearly as severe as so many - I got asked if I flush - and I said yes - yes I do and this weird belly flushing thing in the morning or going from lying down to standing or sitting - dunno why he asked that - he said is it with position change? I said yes with the belly thing - the other flushing is random...

I am 54 and was on the very light side of sweating - I felt as if I almost never did sweat - but that wouldn't be normal - so I'd say I'd sweat so infrequently that I thought I never did. Then in 2008 my sx's began - I am female. So the heavy sweating I sorta attributed to menopausal type things - now I am post menopause and the sweating really troubles me... when at rest or with exertion - it will drip off my nose and eye brows - yuck... I have unstable or labile blood pressure and some orthostatic intolerance with EDS - I take propranolol and clonidine and dyazide along with my thyroid med and nexium - and pain meds. I am never told by my doctor what the sweating is about - the sweat test part of the dysautonomia testing twice was normal. I have no idea what this is about - unless it's just normal for women my age to sweat alot.

I wake up - figure out where my limbs are in the bed.... I have EDS so pain is my second concern once I figure out where I am ... then I gather myself up and walk the 3 steps to the pain pills - take 2 and then lay back down till they work... next I get up again - walk to BR - this is very slow, very stiff and very gingerly sometimes with a four wheeled walker... Same deal every morning - where's my arms? where's my legs? Is everything here and working? PAIN - oh crap ... here we go again! Oh and the other thing is - a huge huge 'rush' for lack of a better word in my abdomen with the first movement in bed as I awaken. It happens when laying horizontal for a nap or to just rest up from fatigue - I don't know what that huge rush is - but it could be pooling perhaps - as with hypermobility the pooling with clonidine is worse I'm told.

It does get confusing - so I may have to write out a question list for my neuro soon... I was told EDS'ers do have often small fiber neuropathy - mine dx'd by biopsy. Okay I was on a medicine years ago that raises HbA1c as an unwanted side effect - and ever since then my a1c is about 5.9 to once 6.4 - and I'm obese. Going on metformin didn't have the number change so quit that after a year. Did Atkins for a month and my a1c improved - but I gave up on it after awhile. The blood sugar - never over 115 fasting - and the 2hr gtt - had my pre sugar drink and post sugar drink numbers the very same - as if I never drank it at all - so I was told that was cool - and normal.. no one has called me diabetic yet. So I have 'eds' and many years of borderline a1c numbers - I really don't know why my feet tingle and the biopsy came back positive. But also 25% of all people have SFN and never have a diagnosable reason for it - a foot doctor told me that. So there's idiopathic neuropathy as well... where you are just 'lucky' - not. Vasomotor instabilitiy - pooling - increased catecholamines with standing - I get all that I think - and I have all that -- but never told POTS aside from a geneticist who said, "maybe POTS" -- I really just had baseline tachy of 100 -- that was my avg. ... Runs of PAT and a bunch of PAC's - PVC's - your basic palpitations I suppose... so i was put on clonidine and propranolol and so far that's been about the best combo found... I've been on many other treatment plans but all failed for one reason or another... I wish I could stick with a wt. loss program - so much would be 'better' - but how someone intelligent and knowledgeable about so much in life - cannot fix this one issue just blows me away... I have labile b/p - and if I lost wt. I'd have to tinker a lot with meds per my doctors orders so I don't bottom out with my pressures - but in the end - gosh Maybe my htn would go away entirely! My joint replacements might actually last awhile - my blood sugar issues might disappear - I mean so much good would happen - Yet for some reason --- I have not been able to manage this one thing. I try and then suddenly have to travel, or a holiday comes up, or I try working, there's always something that derails me - and I don't know why I let this happen GRRRR..... But - back to the issue of neuropathy ... it's complex and I wish I could word it better -- but EDS patients have it - the guess - for the reason of all the connective tissue being wacky and nerves may be treated in abnormal fashion by a body so out of wack - not sure if they think pinched nerves or what - but something like that -- which is totally not glucose related at all...

The whole thing about skin involvement on breast tissue is vitally important... Inflammatory Breast Cancer - though said to be rare - I believe is not all that rare. But it's the most deadly kind and I'm shocked at the number of women who have never heard of it. It can appear as a red area of skin like a bug bite, or rough dimply skin like that of an orange peel, it can be a little reddish itchy area - it's all about the skin... Shamefully some are diagnosed with mastitis or some other minor problem - and then lose their lives because of this delay in treatment. Once diagnosed you must have chemo within hours - and later on a mastectomy... It infiltrates by layers of tissue so most of the time no lump is ever felt. Some may notice one breast being larger than the other - if this is new then it needs to be checked out ASAP. Not too many women survive Inflammatory Breast Cancer - But if caught extremely early - I do believe you can survive. One of the head ladies in the Ehlers Danlos National Foundation died of it last summer - so sad - she so young in her 50's I believe. It's thought my mom died of it - she was 47. I have very dense breast tissue - had a scare with IBC - but it ended up a bunch of hooo ha and I am thus far without it. So I am not surprised a doctor would be very concerned about skin changes on your breast/s.... The question of stretchy skin - even doctors that see thousands of EDS patients have to rely on their experience in exams over the years - and those experts will vary in their opinion... so if it's not hugely noticeable to the whole world - those minor cases - some may call it and other docs may not... subjective opinions vary in my experience. I had a mammogram that looked positive for CA - so had an ultrasound done - it showed negative and that all was good - but the other "non" problematic breast suddenly looked positive for CA - so had MRI's and guided biopsy .... all found just incidently - that's creepy... so they removed something by needle biopsy - I was told I never had anything looking like IBC - yet that was the reason for the biopsy... So confusing... But thus far it's not my choice to go get the genetic counseling for the cancer gene - and yearly mam's is what I'm doing - although if I had better insurance I would alternate with Mri's just by personal preference. If anyone does get IBC - the MD Anderson Cancer center in Houston is supposed to be the best I read - and they just opened a branch in Arizona too...

http://www.inspire.com/groups/ehlers-danlos-national-foundation/ I think the most reliable resource on the web is the Ehlers Danlos National Foundation - or EDNF.org... Perhaps you've visited the website? It's extensive and has so so much you could spend hours on there depending on which areas of interest you are currently looking into - from Conference notes (yes once a year all the experts from 'round the country and the world converge for the patients benefit) to hints on handling difficult doctors to all the different types -- just a lot there. Plus they have an online community - forum - through Inspire. It's lively and you can ask there all your questions if you haven't already. Dr. Tinkle wrote a book called the Joint Hypermobility Handbook which is an excellent one volume book about generalized joint hypermobility and/or Ehlers Danlos Syndrome ... he's the geneticist from Ohio ... A very nice man who many people eventually trek to see in person to get diagnosed and all their questions answered - even though he's at Cincinnati Childrens Hospital - he will see and diagnose and treat adults too at his EDS clinic there. If you prefer a woman doctor - Clare Francomano is the other one many go to see - she's over in Baltimore ... a brilliant lovely lady who also knows her stuff. Dr. Tinkle has a precurser book to that one - that's out of print now - but you can still probably get it on Amazon or other sites. As it's smaller it's cheaper Yes out of all the different 6 types of EDS I believe ... each persons story is unique within a grouping.... So no two hypermobile type EDS'ers will have the same story exactly... Some have skin findings - others maybe just barely or seemingly not at all.... Same with Classic and on and on - there is some crossover of symptoms --- and even the hypermobile type of it has each person with a different "bendiness" story - some dislocate daily - some never.... some have chronic pain - some don't.... some have systemic involvement (after all collagen and connective tissue is everywhere in the body) - and others not so much. For example many have GI issues - like Gerd, slow food transport etc... others have varicose veins, others vasomotor instability and POTS .... some have eye problems -- the list goes on and on as to which body systems in each person 'acts up' ... and when even. So you end up often enough with a medical binder 45million pages long with all your records before you ever even find out you have EDS! Dr. Tinkle is making a binder available as a fund raiser EDS awareness thing to help patients organize their medical work ... It's a fantastic idea! http://www.indiegogo.com/projects/83374?c=home The above is the link - you can watch the UTube video of Dr. Tinkle speaking about EDS a little bit and the need for a concise summary page to show your doctors etc... Anyway - it really takes a geneticist to give you the 'real deal' diagnosis that the medical community will accept as 'real' - outside of that - a few doctors - very few seem to know about this - but when they do - you've got a real blessing at hand... It is said to effect mainly women to about 80 to 90 percent of 'adults' - and it's said about 2-3% of the population - so it's definitely out there! Hope the resources I've mentioned help....

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 slept - everything was so disturbing. Smells bother me - mostly food smells - I can't put the crock pot on overnight anymore as the smell of the food cooking makes me sick and keeps me awake. The smell of GoodWill stores gags me too. Do most normal people also have things like this that bother them - even though they have no ANS issues?

Interesting...I know my tendancy to tachy and hi b/p etc... is tamed by the meds - before I took meds to quiet down the tachy baseline HR - I would definitely get episodes of absolutely bounding heartrates... where your head and neck were just so loud - you can hear it bounding... Those are pretty much gone since the beta blockers etc... Yet this other thing - maybe it could be vein related? It's an easy test to see if your leg veins are 'competent' or not competent with their valves - ie... varicose veins - they just use ultrasound and compress the veins and see the size and if the blood refluxes back down to the feet area ... but these are not the deep venous system that's being checked -but rather the big and little saphenous and it's branches if there are any.... I do have bad varicose veins and I'm told now to wear thigh high socks - I'm resistant as the knee hi's tourniquet me at the knee and don't really improve my symptoms... I suppose I should buy them though and try as I said I would... then I guess I'll have to have endovenous ablation. But it's questionable if those veins would really impact ones OI issues. The nurse says you'll feel less fatigue and more spring in your step ... after the procedures are done - but the doctor said he had one patient only who's labile b/ps were improved with vein surgery. Does anyone know where and how they do the test for venous pooling? Meaning does anyone know what the procedure is to check for blood volume and where that volume 'lives' in the body and if it's normal in you or an abnormal variant? So if I awake in the a.m. and move my legs and my body to get up - that huge flushing rush - seems like it must be something to do with circulation or maybe it's hormone related? So confusing! Thanks to all who posted!

Sometimes I wonder if I should just buy a hunk of land in the woods somewhere and never see a doctor again! I love my doctors to pieces - but I cannot always do what they ask effectively and I blame everything under the sun for my weaknesses - and 99% of the days pass in one frightful thing or another being the focus or issue causing me to not be able to exercise or to eat a certain way and on it goes. So you wake up and wonder what the hugest issue is going to be.... will it be this pain or that pain - this blood pressure or that blood pressure - the hands or the arms - the legs or the feet - the neck or the back - always always it's something - neuropathy sure, OI- sure, EDS - sure. Then when I feel good I am able to exercise - but this joint or that joint act up and it's back to a cane or walker.... though you look healthy as a horse. Not really sure what to make of it all.... It's hard to not focus on yourself and your body when it is literally screaming for attention all day everyday - like take pain meds quick - add a muscle relaxer maybe that will help - better lay down... Let's add magnesium and krill oil and a multi-vit... Who wants to wear compression hose anyway? Soon it will be 100plus degrees outside and hot as heck and arthritic hands that are hypermobile hate compression hose! I need to find a job - I keep saying that - but who's going to hire someone on pain meds and frequent b/p changes causing OI - who probably shouldn't sit too long - nor stand too long nor anything too long! That's when I get the idea that meds should come all by mail order - I should live miles from civilization and all it's trappings ... second Kimbellgirl's notion and become a person of prayer... a dysautonomic monk of sorts - or nun. That way I can suffer in silence perhaps away from anyone and everyone... Some days you just want to run screaming... The other alternative is to learn acceptance to some degree I suppose --- maybe fighting it is just wrong.... So then you have no expectations and just take what the day brings with a grateful heart...lose the fear....lose the anger....lose anything outside of joy.... Wow that sounds like the life -- I can do that for a few minutes a day I suppose ....

That's interesting Issie -- I never considered that as my meds have changed quite a bit over the last year and a half I'd say - or a bit longer.... I am not on Mestinon any more, nor quanfacine, nor metoprolol... My routine now is Clonidine and Propranolol and Dyazide - then Nexium and Thyroid and pain meds. I wonder if that's what it is? Blood pressue is still so widely labile - yesterday I was 98/60 with 52 heart rate and felt bad - then soon enough it's high again - so I can titrate up or down the meds if trending low or trending high - I'll try to remember to ask the doc about this - as usual you are helpful!

Hi Curious once again about the experience I have everyday after laying down to rest or after a nights sleep of a huge rush feeling upon movement in the chest/upper abdomen.... A bit like the sensation of when you look over the edge of the Grand Canyon, or maybe when suddenly super scared, or the fear of heights feeling inside your chest/abdomen. A little bit like a 'hot flash' only it is absolutely consistent with the situation of movement after laying down for awhile. It happens always - it sometimes causes a wee bit of tachy heartrate - or at least a bit of bounding heart rate... Can occur with just leg movement - or rolling over in bed or arm movement. I haven't mentioned this to any of my doctors - always other things take precedence and then I forget - but it is strange and began after the onset of EDS symptoms within recent years. Did any of you experience this and tell your doctor about it? Did they understand and have a reason for it? Is it common? Any info would be greatly appreciated - I do have bad leg veins - incompetent as they say - the right leg worse than left (which is the more common scenario I learned) ... the saphenous is kinda toast I guess... I think the great vessels of the chest are without concern .... any ideas? Thank you!

I know with a connective tissue disorder everything in me is weaker and fatigues quicker than what's seen as normal for many. You can view pictures in books of EDS'ers laying a certain way on the floor that is characteristic of them - also other 'posturings' for lack of a better word ... holding their heads up on a palm at a desk is another - resting at the 'end' of the range of motion giving rise to tendonitis in many places - and the grown ups that were 'floppier' babies and poor in gym as adolescents and adults - have a hard time getting stronger. So you have weak muscles trying to do the job normal connective tissue would do - holding us together - which fatigues muscles sooner again ... we will shoulder shrug, sit with rounded backs for want of a stronger core that simply isn't there. Hard to know what to make of it - but the body is smart and it will regroup to have it's owner still be able to do things - like walking upright - even though their core is super weak... that strains muscles and tendons and ligaments.... So what causes what I really dunno ... but gotta love how we adapt. Trying to fix our faulty adaptations - has to really be 'worth' it - because the training that PT brings with years of us doing things another way - can be filled with slow progress and frustrations. It's not impossible work - but rarely does anyone have the money and perseverance to stay 'on-plan' well after the PT visits are over... it's too easy to slip back into our adaptive styles. I hope I'm wrong in this as I start PT again soon - ever hopeful for some pain relief and real answers!

I despise exercise and PT primarly because with EDS I end up with yet more hospital bills and doctor bills for what happens when I carefully do as I'm told. It's a broken record - feel bad -- go to PT -- tell PT your limitations -- PT says do this anyway -- you try -- you go to the doctor for imaging and injections because you injured yourself by something as little as ten minutes on an eliptical - and lifting a 2 pound wt. a few times. My latest try in the battle that began 2008 was to once again hire a trainer and do some work - I was in bed for a couple of days each time with pain and the difficult mobility due to the pain and the issues causing the pain that cropped up 2 days post exercise each time. On my own I took to an hour three times a week of cardio - then came the weights .... even on lowest setting with the trainer holding my hand the entire way on the machines - I really became a mess.... and haven't been to the gym since. Micro-tears? who knows - lots of theories why this happens - neuropathy may play a hand too Went to my doctor and shared my story which bought me PT again... A never ending cycle - so now we wait in anticipation for someone who supposedly understands EDS and dysautonomia - if I had a nickel for every PT that nodded as if they understood - yet still kept me to their 'pre-determined' PT for whatever body system needs help the most that month - and then I was set waaaay back for their knowledgeable 'help' - I'd be wealthier than my situation now. I know I'm not alone in this - and I know if it wasn't happening to me I would not barely believe something so little can literally have you bed bound (for me pain more than vasomotor issues or OI issues).... But it really doesn't stop me from trying... the last suggestion was 15 min. a day on eliptical and that's it. End of story. Well that and go to PT as well... I am getting a PT phobia it seems - because I want to trust - and my desire to please the PT and not be a problem patient is probably a bit too great. I should be more detached and just stand up for myself if I know something will worsen my issues ... which has me wonder why go to PT at all? If they say 'do this' and I know doing that will have me with a serious limp for a few days - and I get the courage to stand behind a flat out NO - I will not do that because ______ <--- fill in the blank. Yet I usually will try for trying's sake and to keep faith that maybe this time a window will open - maybe this time the miracle will happen! Probably is no miracle to be had - so I will again today do my 15 to 20 min on the eliptical and pat myself on the back for doing it - though inside I'm a screaming mess of frustration. The desire is there -- but a lifetime of 'issues' with exercise has me interiorly keep it at an arms distance away....but I can't hold that arm up for long because the shoulders are so severely arthritic and the rotator cuff tears and severe tendinopathy make that impossible lol... & - we - begin - again :-)

Has anyone done just a basic swallow study recently? What you describe can be symptoms some have with esophageal spasms - the food starts out okay going in - but nearer the stomach spasms make you feel awful - as if there's a stricture or something... Also has anyone done an upper endoscopy to look at your esophagus and stomach recently - sometimes this is preceded by the swallow study and can give more info yet...

These crazy things all seem to go together -- many many of us have an heritable disorder of connective tissue or HDCT ... such as Ehlers-Danlos Syndrome ... this syndrome and the Hypermobility Syndrome have chronic pain as one of the hallmarks of it's troubles ~ and one of the more common features for patients with this - is dysautonomia of one kind or another ... So we hurt everywhere and we get dizzy, faint etc... Then we have all kinds of issues with our necks - which again can cause a number of neurological problems... Small Fiber Neuropathy will often cause 'neuro' pain like the tingly burning type - and also causes vasomotor instability ... but we get myofascial pain and arthritic pain ... and bone pain etc.. Lots of "itis's" like tendonitis. Also we have a lot of GERD and stomach issues heck your whole body has connective tissue - so we can be a mess frankly... I don't know if you have this or not - but it's worth looking into. Also as many here have done - it may be worth going to a one stop shop place like Mayo Clinic or Cleveland Clinic or one of those kinds of places - so that your dysautonomia specialist can have you see any other specialist you might need while you are there. If you do have EDS - then a good doctor is Brad Tinkle in Cincinnati Ohio - he's a geneticist who's written good books - and knows about EDS'ers having POTS... Yet even so he refers out for the POTS like to see Dr. Blair Grubb or those guys like him that help us with both...

I got my chest CT angiogram recently by way of accident. Was at Whole Foods near Christmas and had a weird episode of blacking out with feeling of intense dread come on all of a sudden and then it left as quick as it came - but I was really shaken by it.... literally shaken by it. So went home and pondered if that was a TIA -- I waited past the window for any kind of clot busting med regimen and went to the ER telling then what had happened. My b/p was sky high - so they did a workup -- the chest film they did for some dumb reason was a portable - I was fully capable of walking. Anyway it came back with a widened mediastinum - like they always do when you get a chest film in bed... That's what bought me the CT angiogram - which was unremarkable...as far as I can tell -- the great vessels looked great evidently....

There is always one "lead" primary doctor that is yours at Mayo when you go for something such as dysautonomia ~ for you I guess that's Dr. G. The usual way it goes is that it may be enough to see just him with zero referrals at all. Also he cannot know you until he sees you - and once he meets and sees you - he has to think ... Once he thinks - he will begin the process of deciding what it is that will best benefit you in your time there. He will put in the orders for the different testing he thinks will help him to help you. Based upon the answers from the tests/testing and his physical exam and your history - he will decide if you also need to see someone else. You may or may not. If you do need other visits while you are there - it is the schedulers who take care of the appointment making. You will be given a "main" scheduler who should be your contact person for all your scheduling needs while in AZ. Schedulers should know that you are an out of town person if that is the case. They will try to have all of your appt.s come together in consecutive days. Sometimes there will be zero openings for a specialist till a month or two away. When that happens sometimes you are advised to just show up at 8am in the lobby of the department where your desired appt. is. You go to the scheduler and say you are going to be standing by waiting for an opening - either through a cancellation or some time that opens up in the docs day. So you plan to bring reading material or your computer so you don't get too bored and you just wait. Sometimes within the hour you will find that someone has made you an appt. after all! You will carry a pager so that you will know when to go back in the scheduling line to find out when that appt. is.... this is how Dr. G's Scottsdale appt's work - something similar may happen at the hospital ... Each day as more results come back Dr. G will also schedule you your final summary type of appt. You go to that and discuss what the plan will be for you once you are home again. Because you have an insurance that I'm sure Mayo has worked with before - you wouild be wise to call them and let them know that you are calling to make a Dr. G appt. -- you can then make the appt. over the phone probably - or if not now - when the next 3 month portion of the years schedule opens up... then also ask them about your concerns as regards the possibility of referals with your style of insurance - ask them how this all works when you are on a tight out of town type time schedule - they should be able to answer your questions to your satisfaction. Good luck to you

Yes good point - what if he is absolutely the best chocolate compassionate cake you ever ever had - and that staff.... that staff was a grub in a can of beans, or a jello salad with cabbage in it?

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 PAT or whatever it is you have...than having achey veins - I've never heard that before... I get hot flashes all the time - but I'm the age of menopause... I had one at the insurance office the other day - dry and happy at start of appt. - by appt.s end I was having sweat drip off my face and I was miserable... then it left -- I get these odd times daily - sometimes at night... but I don't ever know what causes what - meds, dysautonomia, hormones etc... I started on Metoprolol at first - too strong... then Bystolic - it did't work well enough - and just recently Propranolol -- mine was to slow the heartrate, decrease my blood pressure and hopefully have it not be so labile... There's a ton of expensive and inexpensive meds to treat your issues - so cheers to you finding a better one soon.

Now some may take excellent care of their patients - I know they are out there - but in the end - if they fall short it could be all about the underwear - as in boxers or briefs? If you can't get the basics right how can we expect anything else to go right, right?

Hi & thanks you guys for commenting! Naomi do you have thoracic outlet syndrome? I guess I only raised one arm - my right arm so I could compare it to the non-raised arm... So I will try lifting both of them overhead and see if they both turn whiter than white or just one... If you don't mind me asking - is there a reason yours only happens to be white on the left.......that a doctor told you about? Like is it white on the left because that's a normal physiological thing to happen for any person due to the way our circulation is set up? Or do have an physiological explanation that relates to TOS? Thanks!