comfortzone

Many many almalgam fillings - moved to a new area and new dentist wanted to swap out 4 of them for the new stuff - I asked why? my other dentist has a watch on other teeth - none of which are the ones you wish to replace? He showed me a picture of 'old' amalgam fillings and said after a time the tooth looks grey and dingy and the fillings leak more and more - letting you know it's time - your fillings look like this picture....

??? I thought about it - and my insurance for teeth running out a week later - so I bit the bullet and had the fillings replaced with something that looks tooth colored. What irritated me was that it wasn't until after he did his work - that he shared these teeth will become sensitive to hot and cold much more than the amalgam fillings.......??? Gee thanks for sharing! Sure enough - I get a zap of discomfort with very hot and very cold items -- in the scheme of things - no big deal I suppose ... but still he should have informed me before hand.

I have I think 3 more to do - but he said to wait because they are so so huge - that I'll need crowns etc...... Whatever - I have 8 crowns as it is - maybe typical for eds to have a mouth worth the cost of a new home...sigh - things could be worse though - always things could be worse!

There are different kinds of tachycardia and different causations - When you get rates super high like near 300 that is often SVT or Supraventricular Tachycardia - and people can get very very symptomatic - and in an ER situation the treatment a doctor can order might be to try things to stimulate the vagus nerve to slow you down (face in cold water, bearing down as if toileting etc.) - If that doesn't work there are IV medications to try next - if these don't work - then sometimes you have to convert the person using the paddles -- but anyway just different means to an end - getting the heart to 'snap out of it' and get to a normal rhythm once again.

Another kind is sinus tachycardia where the impulses originate where they are supposed to in the heart but the rate is fast - though usually not well into the 200's. Finding the cause and treating it might go along the lines of - is the person losing fluid - such as bleeding out from an injury...or just plain dehydration, exercise, fever, anxiety/emotional states, and I guess POTS would be in the sinus tach grouping. Treating the cause would be to provide lots of fluids, rest, treating cause of fever and the fever itself etc...

Yes I would imagine with any kind of tachycardia if it was prolonged, or a sudden change, or accompanied other body stressors, or was SVT left untreated - you could pass out. The bodies way perhaps of getting you to lie down flat - so blood can get to where it's supposed to be easier perhaps - and a way for someone to call 911 if you became unconscious....

That's why it's good to have a good primary, cardiologist or POTS savvy doctor - that may order yet again another holter monitor to get a picture of what's happening - and what treatment scheme might be best or most beneficial...

Take good care of yourself and I'm sorry for this scary incident...

They are blind Tearose ... the worst kind of blindness ...

While not certain of course - my best guess is that your words will also fall on 'deaf' ears.... Gosh why couldn't they get the full trio? Deaf, blind and dumb... But no - I would venture them to get speaking defensive, snarky and the like ... their issue - not yours - you are fearless in the spirit and they are fear-filled to the point of abject misery. Note - they are misery - not you sweet tearose in spite of your experience.

Life experience - wow we all have 'em don't we? There is another major area of misdiagnosis in mentally healthy adults and children for that matter - within the mental health field - and that is the life of those who have survived a damaging 'cult' experience. I would guess if you had to squeeze out a dsm 4 dx on those poor individuals it might be dissociative disorder nos or not otherwise specified.

In a cult the 'real' person is drilled out and the person takes on the persona of the cult leader/members - so they have a cult-self and a real-self. Those that escape the cult are in immense pain - and too often don't know what the heck happened to them, why and what they are to do with all of this pain they feel.

In seeking help with an ignorant mental health professional - often the high demand group (aka cult) or 1on 1 relationship as in a domestic violence relationship - is overlooked and not called out and identified as an issue causing phenomena that can be treated.

So the individual will often be viewed to be paranoid, depressed, anxious, and worse -- and are victim to the medication game. Med after med is given - some end up with a full passle of pills - 8 or 9 types perhaps - and curiously 'they don't improve or get better'......... Well imagine that - that is because that is absolutely not their issue at all! Then the poor victims who've escaped have all these phobias that were instilled to control their behaviour - and some are still behaving as if they were in the cult - it's just terrible - when meds are given for real life issues - so easy to tell a patient to pop pills and more pills and more pills - rather than investigating the events of their lives & getting to the bottom of issues...

And while not all cults are religious (business cults, pyriamid scheme cults, political cults etc.) a fair number are - so just imagine if the poor patient should mention that they routinely sleep on the floor and additionally pray at 3 a.m. for an hour and somehow believe that cult leader & his demands are normal like eating nothing for 7 days and the like .......truth is these people are often highly educated and recruited with techniques that make Mao look like a pansy.

Prolonged psychological trauma additionally can cause ANS problems. The fight or flight system 'on' full time for the entire time a cult member is participating - often years....

Tearose I only mention this to illustrate that the mental health system to my way of thinking - even in the best of circumstances - often comes up short for caring for individuals with symptoms and experiences outside the straight and narrow 'norm'.......be they in a fancy tertiary care center - a famous mental health facility - whomever - there are simply things that are not commonly known that cause people so much pain - and here comes the psychiatrist and counselors with their standard bag of tricks that simply end up rather useless. Worse than that - their standard routine care tricks applied to the person with exact specific needs - means the persons healing needs and care are denied or delayed from real helps that can heal them. True no one can know everything - but ...

BUT when will our doctors and nurses get over their need to 'be in control' and live out of a tiny little box of human experience that might just fit their life experience - they get depressed and put on meds - so that must be this patients problem. Or worse - give them meds and ensure to give them plenty - because that way the patient is rendered helpless - helpless because they are in a situation you created to keep them that way. Heaven forbid if they actually got the real counseling they needed so they could once again thrive in life...

They say retribution is a key element of healing - so I'm very glad you wrote that letter - though I know the idea of suing is distasteful to you .... you sure would be grounded - amen - to pursue things in a legal form.

Keep getting better tearose - write a book perhaps - our mental health system must change. I worked as a psychiatric nurse on a locked unit for two years....and while the system I was working in was a really good one - it was severely handicapped in that it wasn't forward thinking - it wasn't able to see outside the box..... I think personally they could do better - much better.

Candidly I too will admit that there are some unhealthy individuals in mental health who perhaps went into it subconsciously hoping to find a cure for their own very personal brokeness....we had some on the unit I worked on ... I reported them in a heartbeat if I saw or suspected any impropriety ... I'm a full on patient advocate when I work as a nurse for sure...no matter the discipline

May your healing path be swift -- in some sense you are lucky you weren't dragged around longer..... I'm glad this seems to have been one quick (very sadly near lethal) dart that you are dealing with promptly and appropriately with. I've seen it the other way - where patients are given ECT treatments (shock treatments) - again for issues I wasn't sure was the 'real' issue at all..

thanks tearose for your faith and courage !

I sorta have this - but I'm old at 53 I guess - and I have neck arthritis and mild cord flattening etc.. When I try to cook and look down for hours at a countertop - my head gets real heavy LOL... But it's a common posture to find an EDS'er in - when sitting at a desk - hypermobile students will support their head with their hand very often....we yawn a lot too, wrap our legs all around each other a time or two - our postures can seem natural to us - but only when you see pictures in a book of typical postures do you realize - 'hey I do that all the time' - definitely feeling the need to hold your head up with your arms somehow is common....with hypermobility - is this something you have to?

Hypermobility really stinks! So while I'm accepting the situation - I still would love to connect with all the experts under one roof - and tap into their wisdom. I really enjoyed this new book I have on Hypermobility, Chronic Pain and Fibromyalgia. The authors are from around the world and the amazing collection of EDS doctors in the UK have compiled interesting chapters - with dysautonomia discussed too. Anyway Dr. Grahame, Dr. Francomano, Dr. Tinkle, Dr. Henderson - and so many more will be speaking.... I'm going to go this year - last year was too busy finding out if hypermobility was a part of my bigger picture of symptoms - and I was diagnosed with EDS....this year I want to focus on techniques to deal with pain, dysautonomia perhaps and all the other things that are common with HDCT's in each of their forms....

So was just curious if anyone living near Baltimore was going to go - seeing as so many times it seems that EDS might underly POTS and/or orthostatic intolerance...Or anyone at all - I'll be traveling from AZ..

I'm really curious about this thing with intermittant cervical cord compression causing pain in your body - Dr. Henderson's presentation notes never arrived to the EDNF website from last year - so I think I'll just go and listen to what he has to say...I'm still utterly confused how he wanted me to get a 3 level neck fusion - when my local doctors say I certainly don't need it....

So hope to see some of you there!

Once a nurse - always a nurse - but now not working as one at all - and possibly never will again d/t health issues - those experiences were referring to my less than 'fun' exit from full time nursing & into the world of bizarre illness and causes...

I couldn't meet the physical demands of the Chef position - so had to leave :-(

But am now working in a private residence as chief cook and bottle washer - just finished my first week ... cooking for a family in a home so far is still tough - but at least there are chairs to sit in! When I get dizzy - I grab a PowerAde and start slugging it down while moving to a table to finish chopping etc...

Well it's hard for these docs who are so so brilliant in their field - end up with the motley crew of people with co-morbid conditions. So while some have dysautonomia expertise - they may not be totally in the loop with EDS which may be in relation to your symptoms. It really falls back on you to find each of your doctors and then keep them all on the same page so each knows what the other is doing. Had I better insurance I would use all Mayo. But that's not possible so I have my main 'big' concern issues at Mayo's clinics - and specialty things like EDS in the midwest and east coast. Primary care and pain management are local but not Mayo. And each of them absolutely get the pertinent notes and test results of the other - so there is clarity in direction and treatment. It does seem a bit of a full time job to conquer the system - so you aren't left hung to dry if a crises should set in.... Particularly challenging in a new location having just moved here...

But docs are here to offer their best helps if they are kind and genuine and care - helps and opinions etc...they really can't fix what's wrong with you though - EDS is inherited - dysautonomia is about symptom management at least for me.... So I pray pray pray for all of my doctors to have the grace to do what's best for my treatment plan - and so far - so good!

Personally I think I get the gist of what Corina is saying - but not sure it applies to this thread in my brain...

Because as a 'group' formulated for the more elusive diagnosis - those that find fresh air and comfort in identifying with peoples conditions, symptoms, experiences in healthcare -- are exactly whom you are caring for and to...their voices - all need to be heard imho

So some have been on the path for a long while and have perhaps worked through many of the phases and emotions of chronic illness from anger and disbelief to maybe even full acceptance - not everyone is going to be at that very same place...

So the occasional thread topic of having been 'beat up' by the very system in place to help them - is worthy of healing - and often grieving can begin with a bit of venting. I don't see this topic all that often in comparison to the myriad of other topics - but it's valid again imho.

No it's not valid to bang your head against a wall over and over about how miserable life has treated you through less than shining doctor experiences - unless you enjoy that kind of thing - and well there's other websites for those disorders lol...

But every now and again examining the topic to me seems healthy. Again everyone is welcome - not just an 'insider' little group of friendly regulars -- simply everyone - and they are all coming at different stages of healing -- and no matter where you are on the path - you are at least on the path - and sharing gems now and again about something like this is okay with me.

Responsible adults verbalizing sunshine - and storms - it's all good .... and the service Dinet provides for those whose chronic illness is something they face every single day of their lives is amazing ... because those in a storm are helped by others who are in respite - and those in respite can provide strength for those in a weaker place...

No brow-beating a doctor in particular probably is not a good idea on a public forum - ever. A sharing of your experience? Well the helps offered me on this forum have made a life changing difference in how I live my life... I have everything new under the sun to get me in the best possible position for a well lived life in spite of dysautonomia - and almost all of the info gleaned here...on this very website.

Not in favor of censorship - that's my vote.....we're all adults - and if emotional stessors from the medical community weren't valid - then I doubt the EDNF website would devote very large and pointed helpful articles on how to deal with doctors when you frankly often know more than they about your rare or rare-ish disease state. New books published in the last year have entire chapters on 'how to deal with doctors' - that's how prevalent the pain is for both doctor and patient when relations are not going well due to a rare group of symptoms and causation...

a couple of cents worth lol

I'd love to meet you guys - dunno about the date though... Already met a wonderful New Mexico POTSY EDS Dinet person -- we had a lovely lunch one day ~

I LOVE food - so any restaurant is good - a bit of a foodie (understatement) I've tried to hook up with recommendations from Diners, Drive-Ins and Dives as well as some of the chefs from Iron Chef America battles.

Did you know we have Beau MacMillan (Food Nework's Chopped and Worst Cooks in America) up at the Sanctuary on Camelback mountain? He beat Morimoto I believe on ICA ... Then Mark Tarbell - from Tarbell's on N. 32nd I believe - he beat Iron Chef Cat Cora... Tarbells is a bit pricey - but some items are not bad - burgers, gourmet pizzas and mac n cheese for instance - they open at 4:30pm though I think - And Elements at Sanctuary's practically always open - Had a Kobe Beef Hot Dog for lunch one day - the floor to ceiling glass doors that over look the infinity pool was simply magnificent viewing!

For the aging rockers out there - doesn't Alice Cooper own a baseball Sports Bar/Restaurant in Phoenix? I am definitely an aging rocker who needs to be oiled!

Then there's other places too - Adam Sandler ate one slider short of a victory at Chompies - trying to consume 12 Jewish sliders in 30 minutes - They are soo good.... a potato latke atopt a pile of fresh carved brisket, onions on challah - serious yum if you like a New York Deli atomosphere..

What I'd really like is some good Mexican suggestions (not necessarily for 'the' lunch but in general) - and there are some new spots open - I saw reviews on Yelp - thus far I've had bad mexican - and I'm like ??? this close to Mexico and I can't find a decent Mexican meal - strange!

Anyway count me in for a Dys-Dinner-Date --- Triple D! Sounds fun .... :0) A real Dinet Diner experience!

'I just feel there are more needy people out there....(worse than I)'

Bless your heart - Truly though there is absolutely no one more important or worthy of full investigation of symptoms than you. Even if you had to wait a year - and the appt. ended up only being five minutes long - it doesn't matter - you my dear are utterly deserving of that appointment and if you are in agreement with the notion - go for it and let any guilt about it fly out the window. This is YOU time - seriously - I mean that. There is nothing 'little' about constipation - even garden variety. Anytime there's a change in bowel habits - it's worth noting and monitoring - as a nurse I know this. You deserve to feel your best and have your body function at it's best - so let nagging doubts go - and get to your best self through investigation of concerns - you are worth it... so so worth it... I once told a Mayo clinic doctor about my thoughts of not deserving to be there with so many gravely ill patients needing services - and let's just say he very very gently and kindly told me to immediately let go of any such thoughts - I did and haven't looked back....

Constipation is almost always a question neurologists ask about - it's that important and that much of a symptom in neurologically based issues of some patient populations...

Fear not - and hopefully 'this too shall pass' more easily ;-) lol

Cordelia -

I hope you are feeling better - what a whirlwind of a time it's been for you. I too am really desiring a rehab exercise program - I am with Mayo but in AZ... If there is a name of the program could you share it? I wish to discuss it with my doctor - as he said essentially conditioning is my number one job - but understands with about 9 diagnosis/symptom sets going on simultaneously and EDS to boot - this will be a big challenge for me. I have chronic pain as well from the EDS SFN and various other 'itis' so common with EDS. Orthostatic intolerance and labile b/p is huge for me - so if exercise could help that - wow I would be in heaven!

I will ask him if he's aware of the program you share with us - and see what we have here either in our PM&R at Mayo - or Neurology or even cardiac rehab...

I am having a resurgence of tachycardia, low blood pressure and frequent palpitations lately - and noted your testing seems to be EP based...

My cardiac workups were pre-Mayo - showing runs of PAT - (svt) - tachy baseline etc., but normal stress echo. I've never seen an EP or had testing beyond the basic dysautonomia screens. I wondered who takes care of 'conditioning' patients that are rather fragile with vital signs etc...and other issues like arthritis....

Anyway wanted you to know you're a hero for enduring illness while going through a Mayo workup -- I'm glad it's all winding down for you... And remember you can pick up your records anytime you like - well at least in AZ I could...

Be well :-)

I sometimes muse it's even worse to get treated with heavy skepticism or frank mistreatment when you are afflicted with these 'odd' maladies (for lack of a better term) - as a healthcare worker.

So much of your career is spent 'preparing for the worst' so you are well prepared for whatever comes flying through an ER door, Urgent Care door, or the next admission on a hosptial unit....not that you are a negative person - but it helps you feel some sense of control - when all else to patients and family feels 'out of control'

Then the nightmare hits - and unfolds - YOU yourself have a freakish weird malady or disorder or set of symptoms that you yourself cannot figure out for all your booksmarts and clinical experience -- and suddenly you are the patient and at the mercy of those 'colleagues' who now 'don't know you' ....

They whisper, they write ridiculous notes, they tell you it's all in your head, they ask you to see a shrink, they wonder why you aren't at work, they in no way understand what pain is when it's a co-worker - yet they treat it all day long on a normal shift within their patient team. Healthcare workers don't get sick - and they certainly would have the decency to get something normal if they did get sickly.

Maybe the doctors and PT's feel uncomfortable because it reminds them of how vulnerable we all are in life - how anyday we could be on that gurney -

That is not an excuse however for not having tact and not treating the sick healthcare worker with the same dignity and respect owing to all patients - from bee sting to a near lethal asthma attack.

Simply every person on the planet for the virtue of being a human being deserves my best care ever. Deserves my extra time and attention, deserves my active listening - and above all deserves to be believed.

When you finally do find expert and compassionate care for your issue - it's truly life changing - and you feel so bad for the doctors that treated you like dirt...bad because if they did it to you - who is 'one of them' - you know they are doing it left and right to the unsuspecting innocents out there..... they deserve to be reported and humbled -

But it's too much for me to do really. Perhaps life in it's experience will have them come to compassion by a different way than me 'telling them like it is'....... I'm frankly too tired - and feel like crap much of the time.

But deep down I have to think that one day when I get to feeling better - if possible I WILL be doing something to educate about dysautonomia and EDS -- by speaking to groups in person if possible - for now I hand out books to any resident and med student who'll 'bite' - it's not much - but a start.

Shall I assume that you will not be taking your opiate-based pain medication again ("whenever I take my opiate-based pain medication") ? From what you wrote, it sounds like you know what's going to happen, yet you have taken this medication anyway? Did I miss something?

I'm usually the type to try and distill down a problem to it's simplest form and then get to solutions that way...so I had the same question...? I don't have the solution however - just some thoughts.

If the medication you are taking - that is doctor prescribed - causes a life threatening set of symptoms - why are you taking it? Secondly why would a doctor prescribe you medications that cause a major problem for you if the doctors generally are available to people in an ER or any setting to help them?

What is the reason for the vicious circle of taking meds, feeling really bad and terrified, driving to a place that can't really help you as you are the one that took the meds to begin with and keep taking them....then asking for them to somehow make the reaction go away? It's not making sense to me.

There is probably just simply more to this than any of us knows.... questions though would be - wouldn't insurance money be better spent on seeking answers for your pain, getting a responsible team together of health care clinicians to give you alternate ways to cope with chronic pain that don't include medications that cause you to feel worse?

It is my firm belief that God does not hate you....quite the contrary....It is my firm belief that He loves you deeply and tenderly. Why does he allow suffering? I don't know. But it happens and not just to you - but to other very nice people as well everyday all througout the world - and if you know about Christianity as a religion we believe that God himself suffered - tremendously.... So please get help for yourself -- but think about how to get it.... If what you are doing now is not working - then seriously try another tactic.... to do the same thing over and over will get you the same results - which is exactly what you wrote - time to break the cycle and get some real help......Hoping you have the supports and resources to do that.

While my physician visits at Mayo ~ the coordinating doctor and the docs I was referred to went well...I had one visit with a PT that went really awful. I told her my issues with my hips, my four joint replacments, my EDS, my periodic or intermittant need for a cane or walker due to flare ups of a pain that know one can nail down as to what the cause is.....the PM&R Mayo doc ordered the PT.

She asks, "well have you done PT before?" Wow I could have pasted her LOL! NO WITH 2 HIP REPLACEMENTS AND TWO KNEE REPLACEMENTS AND TENDONITIS, BURSITIS, ARTHRITIS, EDS I GENERALLY JUST DO WHAT SUITS ME, & THAT SURE AIN'T PT, KNOW WHAT I MEAN? hahahaha! right?

I calmly told her yes for the better part of two years I have been in PT with sporadic breaks - but pretty much a mainstay in my life...yet I'm still having lots of musculoskeletal issues.

She states, "well to be honest, if you have had so much of it why are you here? you must know all there is to know"

At which point I kindly gave her Dr. Tinkle's book on EDS - and said, "here - you might learn a bit about EDS from this book & then you'd know better why I'm here"

She glanced at it - declined - and I left the appt. ticked off ... then she said, "oh by the way I won't charge you for today's visit ~ you need to think about what you want"

???? Anyway when Dr. Tinkle's (head of EDS clinic in Ohio) dictation came in the mail - he wrote a paragraph directed to PT's just like her - the one's that need teaching - big time. I loved it - copied and sent it to her so she could read I wasn't some nutcase but had real-life, real-time issues with dysautonomia to boot. I wrote her a letter too that I found what I wanted and it wasn't her. I would shift toward pool PT or whatever major body issue or 'itis' reared it's ugly head first type of PT ~ and gain specialized care from a professional PT elsewhere. Honestly the next place was only marginal - tried a third place that is the weirdest ever - the guy admits and tells us patients that his 5 year goal is to treat dogs and not people anymore......?? Wow... In California no one knew much about EDS or dysautonomia - but I had better luck with their people skills for sure... I'll just keep looking though - it's all part of the package with rather unheard of disorders - you win some - lose some - but never give up, never.

That was the only truly disappointing appointment at Mayo AZ... I never mentioned it to anybody - but as long as she's in the PT department I won't be going there ~ unless of course there is a specific rehab program that she is fully not a part of. My best guess is that she's an amazing person overall but has a bad case of burnout.......If she found something else - or a new environment - or a new focus - her discontent might diminish ... I hope that's true anyway.

I have a few thoughts - dunno if they'll help or not ... One is I do understand your frustration with the small town doc situation.... I eventually moved out of sheer exasperation at the care available near me.

Two is - why are you seeing this guy anyway? I only ask that because I had a sleep study - ordered by a sleep doctor who saw me for under 60 seconds literally. Breezed in had me open and close my mouth and left. The nurse practitioner told me he'd do that so I wasn't surprised. I then was eligible for the study. It showed mild sleep apnea with severe desats to 72% on room air. I did not tolerate the cpap machine so canned it ... I still live with insomnia - but it fluctuates thankfully - never great sleep - but only a few times every couple months do I get the 'awake virtually all night' situation.

That being said I was done with the sleep doc that I barely saw. If I were to continue CPAP any of my doctors could have probably taken over that prescription - and if not - well it wouldn't be bad to see the invisible man again if I wanted a repeat sleep study to see if I'd improved any over a years time and wt. loss.

Another thing is - I do believe you can read 'presumed' - as he's actually presuming it. He hasn't tested for it - but things are crazy enough that yes it's presumed you have it. He's banking on it.

For the hormonal shifts and sweating and flushing or whatever all your symptoms are - maybe you could hire a gyn doctor? Or an endocrine doctor? Or a compassionate 'women's care' doctor? A caring and informed primary care internal medicine doctor? This man is not a hormone expert - nor a psychiatrist ~ I guess you could "presume" he has a purpose for a time - but I'd diss him asap. Dunno just an idea though - You can also handwrite a letter that states in reviewing his dictation it was noted the writing of anxiety and depression and clearly this is not an issue so perhaps there was some mistake....

Within the past year I had a doctor who met me for a brief ten minutes between surgeries - did a cursory exam and then declared I needed a three level neck fusion. Then additionally right in front of me did his dictation - and while talking I had to constantly interrupt him and tell him NO that is NOT the case. One of those was anxiety - which he followed 'is common in Ehlers Danlos syndrome' - then he went on to say I had Panick Attacks too - I almost jumped over the desk to snap him out of it....He was obviously over-tired and just making things up on the fly. Un-freaking-believable. YES anxiety is very very much documented to be a symptom that is a puzzle piece that snaps in nicely for the geneticists who diagnose EDS - it's that common. BUT to just make it up? His auto-pilot was on turbo and out of reality imho.... It is unfortunately not uncommon - rather very common to have your medical records read totally screwy. At least this guy of yours wrote 'presumed dysautonomia' rather than behaving as if he was diagnosing it - he's letting the others take credit. It is one thing to chart that a patient 'appears anxious with eyes darting about the room, feet shuffling, biting fingernails and hyperventilating' - and quite another to diagnose an anxiety disorder. It's one thing to say the patient presents with a flat affect, stumbles over words, speaks slowly, frowns and is tearful at most any interaction with the clinician ~ and quite another to diagnose a clinical depression in need of treatment.

At first I used to write letters to have doctors correct their errors - then got tired and perhaps lazy - as all of my errors added up got even quite hysterically funny..... And then it snowballs when doctors lift off diagnosis from other physicians... This same doctor said I had IBS.... Wrong - where was he getting this stuff? So then my local doctors read his stuff and go 'do you have IBS?' - and you feel like an idiot - and go Of Course Not - I think I would have mentioned that if I did have those symptoms!

Heaven help us! The lack of proper sleep for any reason makes everything else just so so much harder. In CA I had a nice primary who tried me on all kinds of different meds - in the end they didn't help - one doctor - (don't try this at home) gave me "a LOT" of full mg.s of Ativan to try and knock me out when I had 3 nights of total sleeplessness.... I just quit all the meds - they didn't work anyway. I have the mild apnea - but sleeping with hardware on my head was not something I could adjust to at all. Funny thing was when I quit the cpap - I began to sleep "okay" -- Perhaps just the relief to not wear it had me sleep - I don't know!

Take care and I hope you can find someone to help you out -- truly you deserve the best care out there!

I'm pretty confused about something so was wondering if anyone else has this b/p phenomena as a 'norm' with dysautonomia....

While I have underlying essential hypertension ~ I get these crazy trends ~ lately week to week.

For example 2 wks. ago - my dialostolic or bottom number was over 100 as in 106 to 115 and minimally the mid 90's every morning ~ clearly showing a need for a b/p med asap in the a.m.

As this can be serious I looked at my treatment regimen - a diuretic, bystolic, and clonidine - The plan because this was so high was to double the bystolic (beta blocker like drug) - which even so is still a 'low' dose. Figured the 3 drugs together ought to take care of things....

Well it did...too much. Very low blood pressures for a week. Well alrighty then - I see my dysautonomia doctor and go back to just the half a tab of Bystolic to see if we can get the b/p back up....

I'll be darned - I can't really get it back up to snuff. I am quite symptomatic with b/p's of high 90's over 60's. So I'm pumping the PowerAde Zero drinks - reduce by half the nightly Clonidine additionally --- Thinking my sky high morning b/p would return in all it's glory today ...

It didn't! So now I'm low even in the morning - !! So I held the diuretic today (because I sweat buckets too lately) took half a bystolic and my normal one clonidine....in the a.m.

AND on it goes....

So curious does anyone here with the high blood pressure, and the yet higher with standing d/t sharp rises in catecholamines sometimes have months of "high b/p" pretty much all the time - relying on meds to control the underlying high B/P to a relatively normal blood pressure

Alternating with months of low blood pressure? I guess I could go in for another 24 hour blood pressure monitoring test - to see what's up on an official level with their equipment at the clinic....

I guess I'm getting anxious and a bit fearful about my body not being able to regulate it's blood pressure - even with the help of meds and fluids - and wonder what the 'end' of that scenario ever is -- like do you end up bedridden or some nonsense?

I get so sick feeling when it's low -- I'm working on wt. loss - but a 7 pound loss really wouldn't cure hypertension - so I am so confused.....I have a hefty 50 pounds to lose to get close to a normal bmi...

Can anyone relate to the instability - it used to be ups and downs in a day from orthostatic intolerance - but a major shift up and down is kind of new to me...

Thank you!

Again I hope that person that went to this sees this thread - I got the idea from reading what they wrote that the focus was exactly like what you described - to live your life with the elimination of pain medication. Maybe the website gives info - or the Mayo Proceedings readings on the internet could give clues about it.... At first pass I would simply have to wonder who the heck came up with this idea???? But there is a lot of science they are privvy too that I'm not - but heck that book I have talks an awful lot about pain and FM and dysautonomia too....with science. Never in the book did it suggest taking medications to relieve pain was something to be avoided. I take medication for severe arthritis and a bunch of other itis's as well as small fiber neuropathy and Ehlers-Danlos Syndrome... I would have to take a pass on this program too... Wouldn't mind reading the literature and learning what they have to share that way - but to sign up? If the focus is irradication of pain meds by forcing a contract to such measures as a 'help' - to the patient - I would have to pass.... I prefer to trust the doctors that care for me in pain management with the use of medications because they improve my quality of life.... My guess is that they would teach cognitive behavioural therapy techniques to help cope ~ and other proven non-med aids ~~~ which is wonderful.... but to exclude pharmaco-therapy seems a bit unusual to me.

WOW - that is one crazy introductory statement - and all I have to say is 'no wonder you are confused' lol....

I have been told I have orthostatic intolerance - some vasomotor instability, I think my standing norepi ~ is right at 600 can't remember for sure.... My heartrate in diagnostics hasn't reached a rise of 30 bpm with standing - so no POTS here - but a geneticist did say 'possible POTS' before I had the official testing things done. Then I get rises in b/p with standing ~ and only with prolonged standing - hours - do I get the crashing b/p... baseline HR is sinus tachycardia - controlled with meds ...

I guess altogether with the symptoms of needing to lay down STAT - I have dysautonomia lol....

Anyway someone here should have better knowledge than me and I'll be happy to read what they have to say too!

My internist just phoned to tell me he is dismissing me as a patient because my symptoms are too complex for him. I asked if it was something I'd done and he said no. He's referring me to the University of Iowa, but I haven't had any luck with them in the past in regards to my POTS symptoms. I feel like I've been kicked while I'm down (again) with the two skin cancer diagnoses I received yesterday. This is dismissal number 6 for me, I think. I don't know how much more I can take.

Aww...I'm sorry this happened. You aren't alone with this experience - it's happened to me - and sometimes I've jumped ship when I sensed that being fired by my doctor was imminent - but with a bit of a tenacity I accepted it as part of the program in choosing my best doctor..

It's so much a part of the experience of folks with POTS and other rarer disorders there are people that write articles to try to help - this link is for articles from the EDNF website ~

http://www.ednf.org/index.php?option=com_content&task=view&id=1442&Itemid=88888976

If it's any consolation at all - even when you do find a fabulous doctor - the nature of dysautonomia treatment paths seems to be one of frequent trial and error .... and referrals to others etc... lots of 'errors' can be disheartening as well...

Since EDS'ers have POTS often enough - maybe you could call one of their offices for a suggestion for a doctor - Dr. Lavallee is in South Bend IN - maybe they could steer you to a good POTS doctor --

Pray you get an ideal team in place - be well.... one day at a time ok?

Does your neuro doc know this? I had some weird urinary things for a time that seem to have somewhat resolved and one doctor thought I might have a tethered cord.... You can google it if you haven't already ... My twitching is new to me - toes move all over the place and left thumb is in constant twitch ... I am still figuring out causes etc...

Hi Cordelia ~ Well you are in very good hands...& I am very interested in what everything shows for you. I did the Mayo process last August - I went from the 3 day visit guesstimate to a full 2 1/2 week stay... my choice though as I wanted answers yesteday ~

I too have the very labile b/p ~ in fact just as you say -- extraordinarily high and then low in one day - for months and months - only cranking up so bad as to change meds over it all - and then having that backfire... one week much too high - the next week so low I can't get out of bed for 1/2 days at a time...

Yes may they get to the why's of it all... I know with the catecholamine testing I had a very vigorous rise in them when going from lying to standing.....so position seems to be part of the issue ~ I think small fiber neuropathy also has something to do with mine - Mayo found that too.

Reconditioning through a chronic fatigue program sounds interesting. I know in the UK for EDS'ers they have full on institutions that admit you for a loooong time - if I remember right it's at least a month - maybe 3? That is to recondition with specialized PT and have a team approach to helping the patients... can't remember if you are hypermobile or not?

Anyway your area of focus is exactly what my Mayo doc is focusing on ...labile b/p - the lows, deconditioning or exercise intolerance...so for my case it's been really just tweaking meds, increasing fluids, losing weight, and somehow getting myself a routine for wellness -- I can't seem to get a handle on it all - hoping your doc can afford you some concise answers that provide consolation and tons of hope to feel better....

Gosh going to the ER while at Mayo! I sure hope you are feeling better from the pleurisy stuff - getting sick away from home can be scary - but you did it with class - at Mayo! That sweat test sounds very challenging - glad you got through it... I just had the kind with little leads attached to arm and leg - a very simple kind of thing - you got the big guns!

I'll ask my physical medicine and rehab doc about any available reconditioning programs available in AZ Mayo- might not be any - I never heard of that here before ~

Anyway - you might already know - but if not - you can daily go and pick up your medical records and review them...that way you can ask your doctor better questions at your final wrap up....

Blessings to you - feel better soon --- Glad you are getting the tests and helps you need thus far..

I can tell you what's worked for me in the past.... But overall it's been a really tricky endeavor to get a good fit. First when I was too weak to walk barely at all I used a personal trainer at a pool. He was a 'master' trainer who I was told would deal with medical cases at a popular fitness club. I remember how freeing it was to not have to deal with gravity. Basically all I could do was walk laps at the edge of the pool back and forth - 2 then 3 times a week. He added some other things too in the water and eventually I could swim a lap of breaststroke. That however ripped my rotator cuff lol....I got advanced to 'land' exercises after that. The trouble then with the trainer was that try as he may to not put me into the mold of his past experience and schooling with other patients - he still pushed me harder than was appropriate. I simply could not do what was asked of me - ever. It also at that time seemed to be a 'brain' thing....like my brain and legs weren't communicating right. So that was the end of that. He's an awesome trainer though for sure ~ doing cutting edge 'functional' training - like Bob Harper does in southern california.... you won't see a piece of exercise equipment in his entire gym (yeah they gave him his own gym area!) Functional being the rope-pulling, tire shoving, bell throwing - the stuff you might see on Biggest Loser.... It really gets people jazzed and enthused as it's relatively new and the people look like they are having a ton of fun while making great gains in strength...

I stopped everything for awhile but right away got very deconditioned and lost my gains in strength and balance so started up again with traditional PT. With joint replacements and some neuro stuff - I was really down on the whole PT experience ... as they like to treat one area - and I needed a whole body tune up. Fortunately after a round of some PT for my core and pelvic girdle muscles I was adopted into their 'wellness program'... Here they weighed and measured you... and designed a progressive program of exercise for your whole body. The good news was it was done in the same room as the regular PT and no one even knew if you were a regular PT patient or a wellness patient.

Here I did ten min. on the bike and treadmill - lots of sets of things on the table, lots of sets on the gym equipment stuff and some other assorted things. The program was 50 dollars a month out of pocket. If my blood pressure crashed or I had some weird EDS issue pop up = I had so much less anxiety because these were trained PT's as opposed to a guy in a gym - who knew little about what to do to help me when I felt very faint one day.

Then sadly I left that environment because of my move to AZ - I haven't found a clinic yet to offer this set-up. One said it would - but they had very little equipment - and basically you were totally on your own. They didn't do a program with you - but still charged the 50 buck a month fee.

So I'm in a bit of a quandry now....I'm in a new PT program at another place now - who understand I need overall mid-range exercises to build strength (not go to the end of ROM)for my entire body. They have like 3 machines and it's going okay - but it is claustrophobic in the clinic - way too small.

When I told him what I am looking for - he said to stay tuned - he wants to take over the entire space he's located in and offer this type of program soon. I won't hold my breath... But I'm afraid when the PT is over - I'll just stop again.....I feel as though I lose any gains rapidly.

I think perhaps I'll begin again here locally with a personal trainer when PT is done at a health club....soon it will be really HOT here & not the best weather to go walking. If I can find a trainer who doesn't mind challenges - and a club that's reasonably priced - I guess I'll try again to get strength with some one on one time - that I can eventually do on my own....Getting a healthy exercise program is so challenging -- pain, finances, dysautonomia ~ you know the drill....& frankly a bit of hopelessness tossed in there as well... But I'll keep working on solutions - Hope some other people share what they've found to work!

Everyone's issues behind the tachycardia might vary - and what symptoms accompany the tachycardia might vary - so the doctors depending on their discipline - everything from internal medicine to cardiology to neurology will have an opinion based on what the patient is experiencing & how they aim to help. It was cardiology that initially wanted to slow my heart rate - and used metoprolol to do it. A low dose - then my primary doubled it -- but it still wasn't really helping all that well for tachy rates and my baseline hypertension. The fear of cardiology was that with my sporadic dips in b/p - that too much would bottom me out. My primary was less fearful. Then my primary pulled the metoprolol and began Bystolic...very low dose.. it helped initially - but as is my pattern my heart rate seems to creep up gradually over time. This happened just the last couple of weeks - both HR and BP changed ... HR was in the high fifties to mid 60's - then it jumped to the 90's at rest. I doubled my Bystolic - as my b/p was high too ... and then I bottomed out for an entire week...so stopped the doubling went back to the low regular dose....but as expected my heart rate is back in the 90's at rest - I guess I'll wear my HR watch again - sigh - and see what's going on with activity.

Anyway for me it works pretty powerfully - I had the worst headache of my life and had to go to the ER when I dc'd the metoprolol for a cardiac study......insane pain and my b/p shot through the roof too - like 172/122... So all of my adjustments up and down with my medications - diuretics and clonidine as well are only with my doctors approval - and he just happens to be a neurologist interested in managing the b/p over and above any of the other disciplines who didn't know how to treat dysautonomia and acted surprised to even hear the word!

Now I have to actually log my b/p 3 times a day! Crazy - but without doing as the doctor says - I may be at higher risk for stroke, heart attack etc... Usually though at least I have symptoms with the lower end of my vitals - the high bothers me only when the heartrate gets 140 or above... Typically don't feel hi b/p ~ it occurs with standing and underlies the usual #'s - if I get a HA - then I'm in trouble usually.

Anyway TMI I know - sorry about my long posts.... I hope you find one that works if you need one. They are a tried and true med for so many people and have been around for a long while - finding the one meant for your symptom set can be 'trying' - but eventually you'll find one I bet!

I have not found anything really as far as lifestyle thus far that's helped my OI or dysautonomia issues. That being said I am not really very compliant with what's been told me to do.... Drinking a ton of water is absolutely NOT my forte' and I suffer from that probably. I hate anything 'on' me so the hose and binders --- aren't on. My meds require very frequent adjustments - and it's crazy making where the vitals go from one extreme one week to another extreme the very next week. With a high baseline b/p - the normal drugs are not given me ... but other one's are. The tiredness and fatigue mid-day are unrelenting - but for me are relieved by laying down flat for a half hour or so...the old lay down or fall down routine. So I pretty much 'pretend' I don't have EDS, dysautonomia or anything at all. I take pain meds and push through a day as best I can. For me it's a mental battle overall - my worst fear is slipping into a clinical depression or some such thing... So I keep trying part time jobs .. finding them too much, quitting, and beginning again...until maybe one day I'll either die or perhaps find something suitable. For me sitting at home would make me insaner than I already am - and I get more and more deconditioned as pain is a reasonable reason for me to not exercise - at all. It hurts not while I do it - only after - and I have no guage as to when I'm hurting myself...unless I near faint. BUT ... if I force myself to work in a job - then I am made to think of someone other than myself and ignore my pain and issues & I have a minimal amount of activity this way. I don't recommend this 'way' though - 'don't try this at home' kind of thing lol... I'm just enough Irish to have it work against me.... I wish I could take some kind of Zen pill - something to have me not freak out about all of this - but anxiety is part of the whole ball of wax as well...

So I keep trying...good days, harder days, trying to find my nitch in the world...and as we all know it could be worse! So I guess I 'pretend' a remission - but thus far it ain't happening - but then again in the 5th decade of life - with sweats, flushing, neuropathy - dunno how much better it ever will get... I get more and more like Gumby in my hypermobility - counter to those that print - we stiffen as we age... not I - so the degeneration is in overdrive it seems......

My fix? Chocolate. Laying down. A rare glass of wine. Laughing. Baking cookies for others even if I have to take a break 6 times. Pacing housework. Petting my cat. Yes it certainly could be worse!

Wow - happy you are home & I hope things went okay? Someone that posts here was asking about this program not that long ago- can't remember who ... hopefully they will see your post here and write abou it.

I don't know how much you like to read - but there is a book for about 80 bucks on Amazon.com by some doctors called Hypermobility, Fibromyalgia and Chronic Pain.... I mention it in case you have an interest in learning more about at least FM and the pain issue. Has anyone checked you for joint hypermobility? Often the POTS - hypermobility issue goes along with a pain syndrome for some folks - and I guess the mystery of fibromyalgia is also included to some extent in this loop.

Wishing you well!

Agreed - there is nothing whatsover 'benign' about joint hypermobility syndrome - now touted by most in the genetics arena as EDS - HM or the hypermobile type of Ehlers-Danlos Syndrome. One in the same entity.

Even if it's not exactly EDS-HM ~ there's not yet the isolation of the gene to 'blame' our issues upon for this type of EDS...& so there may turn out to be an entire as yet un-named entity that many of us have that are flexible as all get out - but may not meet the criteria as strictly as others -- only this fine fine tooth comb approach to diagnostics through the likes of Dr. Francomano - will maybe in the future one day name yet another old but 'new' heritable disorder of connective tissue.

A skin biopsy can reveal some things - checking collagen types 1 3 and 5. While this can turn up normal - if it's not - then more tests are done - to see if it's something like osteogenesis imperfecta and other HDCT's. There is a blood protein I believe that can reveal perhaps if you have the vascular type of EDS -- some kind of blood test is done...probably info to be found on EDNF.org.

Dr. Brad Tinkle in Cincinnati is fabulous to see... And the books that are amazing are two of his that you can get on Amazon.com - the hypermobility handbook and his first one - issues and management of joint hypermobility syndrome. Then if you want to get into the science of it all the book called Hypermobility, Fibromyalgia and Chronic Pain - by Hakim, Greer and Grahame - is absolutely awesome. Pricey at near 80 dollars I think - but tell so much about Hypermobility and it's effects on the ANS and why etc..

Some of these fine docs will hold a clinic at this summers conference in Baltimore for maybe only the price of the conference for people with great need. I opted to go for the one on one personal appt. as in a regular appt.

There's another guy in South Bend, Ind. who is an orthopod working with sports medicine and musculoskeletal disorders and he has EDS himself and people really like him a lot.

Anyway I was glued to books early on because it was like someone was spelling out my life story on the pages as the book unfolded... every body system is affected by hypermobility syndrome - who'd have thought that? Gastro, endocrine, vascular, hernias, headaches, dysautonomia, bone issues, feet issues, neck issues, all of it because I can bend too much!!! Unbelievable.

Dr. Tinkle and others are trying to get the word out - and even made a phone App - of the Beighton Criteria for generalized joint hypermobility - so doctors remember to check for it!!! I saw so many doctors who never caught it.... one brilliant one that did - but even so she didn't know much but what an online patient info sheet said (that was outdated and not longer really pertinent) BUT if it weren't for her - I'd still be in the dark with dysautonomia, all these joint replacements, the vein issues, the gut issues, the severe arthritis issues...the foot problems, the sleep issues - even anxiety which is a very very common issue found with joint hypermobility - possibly to do with proprioception issues...

Anyway - it is important to learn if you feel the desire to learn & can manage somehow to get to an EDS specialist....it makes a difference ... to know people are researching and dedicating their very lives to helping people with this 'anything but benign' disorder!