comfortzone

Mayo Clinic's Dr. Brent Goodman - Neurologist - POTS savvy in Scottsdale and at the Hospital

Glad you can write about things you are going through here as well.... I have to laugh - my doc told me to try not working at all for the next 2/3 of the year - to help myself get better - and I'll tell you I just felt paralyzed - like if I don't 'do' something I'll just get weaker and weaker....I had put an ad in Craigslist that I could assist a family with a bit of childcare and be their personal chef.... In this way avoiding having to deal with a 'corporation' and the demands of a job that is out in the regular workforce... I tried nursing and failed, I tried the chef thing and failed.....meaning I couldn't meet the physical demands of the jobs...(that was sad!)was tempted to get really depressed about it all.... & then just figured I should carve out a job for myself - put what I can do on-line and hopefully someone will hire me. Someone called and I actually start in a couple hours - my first day. If it works great! If in the end it's too much... well nothing ventured nothing gained I guess. So maybe you can post a free ad about the situation you desire and someone will see it - and you can get started on getting the assistance you need... I can be so stubborn I suppose.... Not unlike you - I just want things to be 'the way they used to be' - but as I can see that's not the best thing to focus on ~ I'll just keep tryiing to keep seeking peace in the everyday events in a day - straight as they come...& let go of my sadness... for me it's a purposeful choice to choose JOY over sadness...and it has to be an everyday attitude change.... Sometimes I'm glad I live alone for all my 'grumbling' in a day lol ... other days I cry for want of a 'support system' ... But in the end - I have a roof over my head thus far -- and Springtime is full of newness and happy surprises ~ so will again keep hopeful.... Hope you get someone to help - it can be empowering to take actual steps to conquer the issues with dysautonomia.. Blessings!

Huge Hug to you ~ Your post near broke my heart because I don't think you see yourself as the amazing person you are... First we need to deal with your feelings in all of this. Vent away ~ your path right now is very difficult but in the end all will be well........believe that ~ strive to stay hopeful and peaceful as possible. I just know you would certainly never judge anyone else here - as harshly as you may be viewing yourself and your situation. It is so ridiculously hard to push through negativity at times when your heart just aches for what you wish you could do - and what you were maybe capable of doing awhile ago. But you cannot give up on 'self-kindness' -- or give up on you... Dysautonomia is pretty much something that flows on a continuum....maybe before in our lives we'd have an illness and in due time it fully went away...like a cold, or something that was 'fixed' with surgery. That kind/style of healing pattern isn't as often present here. And the curing 'way' is varied - over time perhaps using trial and error - even the finest doctors in this field utilize safe trial and error - tweaking meds etc. to help. Bring on all the helps you know to keep you in a steady mood as you endure this difficult time you are in. If you are a person that uses or relies upon faith - dig deep to use that strength...maybe buying a spiritual uplifting book, having a church minister or lay person come to visit you at the home once a week, watch an uplifting movie, there are even on-line prayer sites... That may be one option. But there are others. Even in the muck try to cultivate gratitude....this isn't easy - but with practice - maybe a gratitude journal - doing a daily mental check of all the blessings and amazing goodness in your life can help maintain healthy emotions. Writing a bit each day - can sometimes help because in a real sense it's telling your story. Maybe write a letter to your child (not that you'd send it - but just to express your love and joy over their presence) about how proud you are of him/her ~ begin expressing yourself this way or through poetry, or drawing - some kind of creative outlet right in your little journal perhaps. Taking care of yourself in this is a full time job period. There's medications, hydration status, proper nutrition, movement in some form of bodily exercise -- these are difficult for all Americans (witnessed by our nationwide health issues) ... more difficult with dysautonomia - but perhaps more vital. Our 'little' morning routines are anything but little...they are the foundation of a healthier lifestyle. View them as necessary work and feel proud when you get to your morning - even if it's not till 2pm! Treasure them and the efforts you put in to keeping yourself as well as you can be, for your little one, your husband and YOU! For about $9.00 per hour in my area of the country you can get someone to shop, cook and tend to the baby for a few hours....If that is do-able for couple days per week - or more.... That person can be built into your home routine... Playing with the baby, feeding the baby, prepping snacks and dinner - maybe on a Tues/Thurs where meals can be made ahead for the next day... some will do light housekeeping too such as laundry etc..Again this isn't to say this is necessary but just another way people change up the routine during difficult times...Some churches have teens that volunteer in this type of capacity... In the end though the goal is to understand there are no "shoulds" in your routine as in comparing.... Either to others, nor the past. Shaking off the thinking that this 'should' be this way ... not that - can rob you of strength and hope and drain your energy ... Understanding and embracing the life that is yours - even though it may differ from your mind's eye dream is something you can do... Enjoy as you are - the little one's smiles and your time together ~ She's your blessing and so so lovely! (She or he ... can't remember which your baby is!) Maybe you can have set some time aside to formulate a plan with your husband about how to deal with these feelings inside...Maybe you have already... Letting others 'in' on things so you don't feel so overwhelmed ~ here on the forums - but at home too....The old two heads are better than one thing to maybe carve out a 'new' way to cope or reinforce some ones that work... It really does take patience and humility to ask other's for help and deal with the fallout - after four joint replacement surgeries with atypical healing paths - I understood that pretty well. But perhaps the biggest hurdle for me and I still work on this - is battling negativity - it's worth the rewards and even if the natural circumstances remain the same - life does get so much more joyful and rewarding for these efforts... & they were never 'huge' things I did ... but savor the birds singing in the a.m or at night roosting... Baking browinies with some neighborhood kids - Little joys made a big impact - and letting go of any 'beating myself up' .... That's the most painful thing to do ever.... Remember you are every bit as amazing a person - as the people that you admire! When we compare ourselves to others we can misunderstand life and ourselves. You are a wonderful human BE-ing...not a human DO-ing. Be who you are - awesome! Expect things to get better -- trying to cultivate these good emotions can have healing qualities.... It's a natural thing to want to be better for sure ... I think that everyday .... but then go straight to the sink - down a glass of water - and begin again :-) Blessings to you

Would it be possible to have a regional block - like a femoral or popliteal block or both rather than a general? The only reason I ask is that if there is a chance the patient has any hypermobility of the neck - when they crank the head back to intubate etc.... some cord compression could occur and set you up for some unexpected issues post op perhaps. I have 3 different joint replacements with a spinal......only one with a general.... before I ever knew I was hypermobile in most all my joints..... I do know that with hypermobility often local anesthetics just don't work all that well - they are absorbed much too rapidly - leaving you in pain - and the medicine absorbed so fast your heart can react to that medication...such as lidocaine. If hypermobility is not an issue at all - I would follow probably the most conservative doctors recommendations - as safety first is always recommended. I know that with a full on general AND the femoral block - my heart rate sky-rocketed when the doctor made his incision - and so did my b/p - something both the surgeon and anesthesiologist felt compelled to tell me about once I was in recovery...they mused, "wow your body must use that stuff up so super fast!" I mention it as sometimes bone issues can be a sign of a connective tissue disorder or a problem with collagen types 1, 3 or 5 - others too - so your cell matrix is different that the average joe.

As you already are - remain focused and vigilant to find truth in this.... & be very wary of any who suggest surgery to decompress your neck. There are theories you can find by googling intermittant cervical cord compression or PC3 - 'positional cervical cord compression' and list it as a co-morbid condition with fibromyalgia and hypermobility and other things - dyasautonomia another I believe. Sometimes you can find you link - maybe copy and paste and send it to your neuro asking if there's an outside chance that your dysautonomia could be linked to the neck issue..... I have some respected doctors telling me my symptoms are from my neck and to have surgery and other respected physicians saying, 'I wouldn't let any one near your neck with a ten foot pole' -- and more doctors on that front than the other - who is just one. It's not fun to have the burden of being your own best advocate by researching and seeing the countries best - or reading their works & trying to come to a decision - it's a temptation to believe your doctor should have all the answers - truth is you have to have a team approach - you and them - both, as your conditions are on the newer end of research and rather rare-ish.......if the docs are worthy of caring for you they will welcome your input - welcome you getting second opinions etc... The symptoms we have stem from different body systems and reasons so the treatment plans can vary widely ... pharmacologic treatments vary widely - as some work in one way - but don't work in another - so finding causation can be really helpful...good luck to you!

That neck thing is my big quagmire or 'odd duck' thing... Where EDS savvy neurosurgeon says to have a 3 level fusion - and other top notch Mayo folks say, 'Wha??? is that guy talking about?' - And don't hesitate to mention the study that found all these people wandering around with serious looking MRI's with absolutely no symptomatology at all... Leaning toward - we don't believe there is central canal stenosis to block things - you are fine.... it just reads bad on MRI - to the other guy saying 'it's OBVIOUS what your issue is... blah blah blah' - and it's HE.... double toothpicks living in the middle with symptoms I'd rather not have. If my cord is mildly flattened on MRI - a regular lying supine MRI - and if my neck is hypermobile - wouldn't it then make sense that I have cervical cord compression that worsens in extension? Certainly I'm not signing up for any surgeries - that would be the end of me - but I'd like to make an educated decision that way - so that if the one guy is correct I could be a quad if I don't have surgery -- well could someone please prove it before I seriously consider a dangerous surgery - with EDS - that would forever inhibit my ability to move my neck? Your post was the first I ever heard of "benign cord compression" - never heard of that - but that might be what Mayo is trying to say about mine. However if you have symptoms of pain etc...body wide - how benign is it really? The Obstructive sleep apnea, cord compression, hypermobility, and other things put you at a greater risk of Fibromyalgia I read - but really who the heck needs yet another 'mystery' diagnosis tagged on? Fatigue - yes ... but how many other things cause that - even simple pain! I don't have that fatigue that 'never goes away no matter yet' - I have the sudden hit a wall fatigue - and now I find my blood pressure is crashed at those times - makes sense why I feel so much better if I lie down for half an hour or more... Good luck with everything... Patience is truly a virtue in all of this - but even moreso is counting our blessings in a day so this focus doesn't have life pass us by...

I don't have any advice - but I do have this as a newer symptom - it began one day as I watched in amazement at all my toes moving around on their own - unable to stop them - so weird --- my friends told me to paint them like people and do a utube video for fun! Then came my infamous now left thumb - it started with rather large twitches - now they are finer twitching - but the annoying part is that it never ever stops anymmore - it's a constant - I really don't like that at all. It doesn't hurt but it's annoying as heck to have your hands moving on their own. Blessings to you! I think the bigger jerks as you nod off to sleep are common and not an issue - except for me - this happened when I was in the MRI tube after taking an Ativan to relax - my legs were jerking often and I couln't make them stop - ridiculous - probably I was just beginning to doze - myoclonus I think it's called!

The books I g0 to - to recommend about EDS and associated symptoms relating to other body systems including the ANS are these - On Amazon you can find books by Dr. Brad Tinkle - the head of the EDS Clinic at Cincinnati Childrens Hospital - He has two - One is blue and white covered a bit cheaper and for around 12 bucks you get a lot of info - then a sequel or more expanded version was written a year ago or so - called the Joint Hypermobility Handbook - both good primers about all the body systems and their behaviour often encountered when you have generalized joint hypermobility. A third book is by Hakim - Greer and one other of the prominent UK docs I believe - The title is Hypermobility...Fibromyalgia and Chronic Pain. This book is truly geared to all of those that are really into the latest research and science that goes behind the multitude of symptoms frequently encountered by Hypermobile people - it also talks a bit about the mystery of Fibromyalgia - though not nearly as much as the hypermobility issue. I find it fanscinating to read - and pick it up kind of slowly to savor a chapter now and again... There's also another thing found in this group of patients - neck issues.... such as intermittant cervical cord compression - which I believe can cause chronic pain and perhaps dysautonomia stuff - so many things are intermingled I forget how to articulate what I just learned - but Chiari Malformation issues and things with the neck because we bend greater amounts can be problematic .... I agree - it's important to pass along this important issue - connective tissue - collagen is everywhere - so it's no surprise to have connections with other body systems... And on the EDNF website you can go to the resources page and scroll down on the left to find the "handouts" from the 2010 conference in Baltimore - they've gone paperless - so all the stuff you get by going - is on that web page...... This years is still upcoming - and some docs will be seeing patients at the conference to help people out...

Thank you... I'll read it more thoroughly later - my brain not working - doesn't help Rachel Ray's chattering in the background lol... I know I have normal catecholamines with lying down - and they quick go up with standing - I think most peoples does - but nonetheless the doctor thinks thats part of the reason why I have big rises in b/p with standing.... I am really tired of trying to figure it out.... It seems like it would be fun and challenging to 'doc' patients with these symptoms - pharmacologically and other ways too... But when it's me personally - I'm sick of feeling sick - and it's just not fun anymore LOL.... When I've felt cruddy after a very high morning b/p the last 2 days - and check my b/p standing - yep it's 90's over 60's and I am symptomatic with that -- my heartrate though is suppressed with the beta blocker so it's okay these days.... Again thanks for sharing what you found.. I subscribe to that page and now and again find cool stuff too!

I always have given up on them - measured to fit - the knee highs feel tight at that top ribbing - also it really bothers my hands which are hypermobile to put them on. Excuses maybe - but I tried last year for a couple weeks to wear at work - initially the first hour I love it - but soon they feel binding at the knee and I feel miserable.... Same thing happend in my twenties......Anyway I have never been a person to wear coats, hats, boots, scarves, glasses - don't like splints and things 'on' me -- even in 18 below zero - no hat and layered clothing with light shell jacket! I would overheat so bad on a snowmobile ride - I'd dive off the thing once at my destination and jump into a snow bank and lay there till I cooled down! So I may not be the most fair judge!

Hope you are under the care of a doc..... I have the high b/p - low in my youth - but now high and extremely hard to manage with dips low daily that make me have to lay down --- not orthostatic hypotension at all.....but rather it goes low with standing and light housework for an hour or so. Yet, like you, high in the morning 140/106 not unusual - in spite of: a beta blocker, a diuretic and clonidine twice a day! So what do you do.....well I had all the workups to rule in and rule out cardiac things and I'm good........the 24 b/p test showed what I already knew - very labile b/p -- all over the place. So while many many dysautonomia patients are put on meds to raise blood pressure - that is not a class of drugs I am allowed to take. And one thing I've been told is I need to hydrate at least 100 oz of water a day - preferrably more - and of course I've never been able to get more than coffee in the morning in before maybe a diet soda in the evening - so for me it's challenging to get even half the recommended - but I try. I guess the doctor will work on in your case what's causing the dysautonomia or what's causing at least not helping the high b/p - for me - losing weight still, maybe reducing salt though I crave it - and getting imaging for other things that might contribute - nephrology workups can tell if you have essential hypertension or hypertension from a secondary cause - say a tumor or problem with kidneys etc.. So keep up with your health care provider - with me frequent tweaking or at least monitoring of meds is necessary...

That's a good question but faces a very broad array of possible answers or clues....I say this because there are so many co-mobidities - the less than well understood Fibromyalgia, Joint Hypermobility, the dysautonomia, obstructive sleep apnea - even intermittent cervical cord compression - somewhere around here I have a book with theories - but there is more in common with POTS and like things with Chronic pain - even Chronic Fatigue syndrome....with other things - than fatigue from POTS alone....so bottom line - I guess is I don't know off hand ... but if I dig up that book and find anything useful I'll pass it along!

Welcome Tonya - NO for heaven's sake you have not been inapproprite in the least. I read your posts and you are extremely articulate and have quite a knowledge base already - and are going through an extremely stressful and anxiety producing time! This will pass -- things will get pinned down - help is availabe, there are good clinicians to guide you and your family to a healing path..... You are very fortunate to have found the forum here - it is exactly here for the needs of those just as yourself.......and it's open 24/7 - so do post as you need to ~ process what you read - use what's helpful and don't use what may not apply... For the most part we are not physicians diagnosing or nurses doing care plans - but we are our own peculiar type of 'experts' by our lived out day to day experience in having dysautonomia, traveling the path of seeking a good care team to help us, using the varied helps available to help our symptoms........which unfortunately often are of a chronic and sometimes frankly disabling nature. The good news is that absolutely nothing ever stays the same - things change, people heal, new helps become available etc.... So hang in there and again you are more than welcome here and don't hesitate to post - we may not have the answers you seek - but we're more than willing to listen and suggest what we can to help you out to some degree at least....

Hi Jana -- I was saddened to read about this crazy flare up in your symptoms! I have read about all these different reasons for SFN - amloidosis, Fabry's dz, Tangier dz, diabetes, gluc. intolerance, HIV, h.o. med toxicity, h.o. alcohol, too high triglycerides, Sjogrens.........and the good old fashioned - we don't really know exactly why you have it.... I was of the impression that dysautonomia in its varied forms were a result of SFN or at least SFN doesn't help things....and not so much that you get SFN from dysautonomia... So for instance - I had four nights in a row where upon waking up in the morning I had hugely burning bottoms of my feet and up the back of my legs...but soon into the morning it went away. After four nights I was relieved that then it just disappeard. I also noticed how at my job I could pick up extremely hot items and not even flinch - where other people were like - 'girl use tongs or you'll get hurt' Also my hands - are weird - my thumb twitches non-stop a new symptom - and the 'usual' of extreme stiffness in the morning with no ability to grasp them shut in a fist or open them fully - and hour or two into the day - the symptom disappears. When I report to the doctor any worsening of my symptoms - the answer is yes small fiber neuropathy symptoms can progress - With me the suspected cause is glucose tolerance being not normal or an HBA1C of about 6 for a few years - so that pre-diabetic thing. So no real 'doctoring' type stuff aside from vigilant every six month glucose testing - wt. loss - stuff to help metabolic issues...in case it is my blood sugar causing more extensive damage to the myelin sheath of those small fiber nerves... But in the back of my mind - since the list of causes is kind of huge - and they don't know 'for sure' the cause of mine - I might go through the list and see what may help.... So I could try gluten free for awhile - though I do not have Celiac disease - it cannot hurt and may help I could also try that supplement mentioned .... and just try to live the healthiest life I can - with greater focus... As far as symptoms and helping them - In the January Clearances at Kohl's I got a nice foot bath - and with it came a paraffin warmer for hands deal. I've done that wax dip thing in physical (hand) therapy and it was pretty soothing to have coats of the wax on my hands then the hands in plastic bags to keep in the warmth... Anyway I hope you feel better -- I think you see Dr. G? Maybe as you said give his nurses a call and report what's going on and get some recommendations so this will hopefully pass - maybe he'll want to see you sooner than your next appt. Keep smilin' and may those poor hands get some relief asap!

Hi... I would probably get to one of the docs who's really focused on caring treatment of dysautonomia - and willing to take you on as a patient for the long haul. It's just one of those disorders that's rarely a quick fix and requires tons of patience and willingness to tinker with different regimens - some medication, some assisstive aids - some lifestyle changes etc. It takes a very special person to care for these complicated cases with careful assessment, formulation of a plan, willingness to adjust the plan etc... for the patients best possible outcome. Add to that you need a specialist in dysautonomia who is willing to work with other disciplines to treat the whole patient - not just the ANS ... but all of it from gastro issues, to metabolic issues etc. We are not just "one" thing as a rule unfortunately.... One suggestion would be the Mayo Clinic. Others would be the ones you see mentioned here ... maybe do a search... Vanderbilt, Cleveland Clinic, Mayo Clinic, Dr. Grubb -- the people here have been in your shoes - no reason not to tap their wisdom. I chose the Mayo Clinic and have not been dissappointed. The system works where you get an appointment with your chosen doctor - that doctor from there on out coordinates your care during your visit - which can be up to a week or two long depending on your case. So in the Mayo Clinic I go to (AZ) the doctor that is the dysautonomia specialist is Dr. Brent P. Goodman. His area of practice is neurology, neuromuscular issues, and dysautonomia/POTS. The scheduling area will have you fax in any of your records that you have and then you will hear back if they can schedule you with him. Once you meet him and speak about your health concerns and why you are there - you two will formulate a plan. That may involve some ANS testing, some nerve testing, maybe some bloodwork like general stuff and/or catecholamines, whatever it is he needs to help you. That can take a day or two or three. Also in that time you will be scheduled with other disciplines if that is pertinent to your achieving better health - so if you have rheumatology issues - you'll be hooked up with a rheumie consult, if you need gastro, or nephro - whatever you need you see in your time there. After all that is compiled he will then have a follow up visit and share with you what your testing revealed and go over the plan. The computer has all of the consults and all of the results for each doctor to see as you move through the system. Then you have time to ask questions and discuss things in detail. You will not feel rushed with him. That's it.....you go home and try what's suggested. And again - as with everyone with POTS or orthostatic intolerance issues - we all respond differently - we all change readily - symptoms change with what we drink in a day and all sorts of things. So it's not that you see the doctor and you are cured or instantly feel much better. Sometimes you luck out with something that is radically helpful for awhile - sometimes things seem to stay the same - sometimes you feel worse - but the good news is that you know you are not crazy, this is real, there is someone who absolutely truly cares about you becoming the best and healthiest you possible! I don't know if this sounds like a good fit for you or not - again maybe do a search and see what comes up when you look for doctors at those major clinics....... good luck!

Wow this is amazing to me.... I have exactly the same thing...the worst part of my day is when I first open each eye in the morning.... I find my position in the bed and uncurl and unfold each limb - and very very slowly and carefully sit up at the edge of the bed. Next is standing & finally carefully attempting to walk - little tiny steps - my hands are stiff and painful - cannot make a fist - nor open them fully. This part then moves to finding the pain pills and other a.m. meds and toddling <-- slow careful gait - to the kitchen to make coffee - next a chair and computer time and coffee till able to move from pain relief. Then it's just puttering around, resting, puttering around -- after six hours of this I'm trashed and have to lie flat - sometimes even at four hours....dunno why the fatigue - but soon after lying down - things equilibrate and I'm up again....... Now begins the best part of the day for me - generally from about 6 or 7pm till midnite - I cook, or clean, or do bills, any little project - night time is my good time.... Then as you say - I look at the clock and think, 'crud - well here we go again' - enter the tossing and turning - the eventual sleep and that horrid minute you wake up - wow it feels like someone ran a steam roller over me! Blood pressure is super high in the morning too - dysautonomia/chronic tiredness issues/ --- all likely related somehow.... My doctor now wants me to take my blood pressure while I am standing the times in the day when I feel that 'hit the wall' must lay down sensation... so we'll see what comes of that...

Count me in ' the high b/p ' group for sure. And it's also very variable. I'm now being asked to complete my second 24 hour b/p monitor test. I begged off initially because the last one I had - gave me a skin rash as the cuff is so tight on your arm for many hours & because my insurance changed and it may not be covered. But lately it's just gone through the roof. I doubled my Bystolic (used to be that dose would have my hr plummet) - but I guess I adjusted to that dose so now even with the double dose - I'm high... I also take a diuretic and clonidine twice a day. Part of my issue I'm sure is being overweight. Another might be that I crave salt & maybe that's not so good for hypertension. But the variability of being really high and really low in a day - day after day - is likely dysautonomia based. For me really low is anything less than 95/60... I also have extreme difficulty managing to get the fluid intake I'm advised to take in a day. I've tried everything and fail. I'm supposed to get in at least 100 oz a day. I'm lucky to down a quart. I lose my pulse pressure as well...probably chronically dehydrated as a reason. It's pretty 'not optimal' to have good hydration days mixed with dehydrated days with inconsistancy. The catecholamines test showed a very sharp rise when going from sitting to standing. Small fiber neuropathy probably has some impact as well as the baseline tachycardia. Thankfully the Bystolic counteracts my fast heartrate and that's behaved very well for some time now. I was never much over 140 anyway to my knowledge to begin with. Glad you're getting follow up for your rising b/p -- hopefully it will settle down for you soon ~ best wishes!

REEEEEEN....You are always so thoughtful and caring ~ And even though the world can never have enough souls as marvelous as yours ~ I want you to trust that the sidewalks and pavements are fine and not at all lonely!!! AKA - Leave them alone LOL... Poor Reen - I am so sorry this happened to you and also Pat! I hope you are healing well --- well I guess enjoy the new spectacles even though they came about in a simply dreadful way.... I don't know what we'd do without a sense of humor ~~ I have to laugh at the daily shenanigans I go through to make it through a day - and I swear my sx's are not as severe as so many here! Safety first - sure that's fine for a baseline healthy practice....but the saying gets kind of lost when we get blindsided with crazy vitals, crazy pains, crazy balance issues that have our rubber meet the road so crazy unpredictable and fast! I swear if I wore all the braces that I've been stuffing in my closet to help with the EDS stuff - it's like a full set of armour - all I'd need is a bike helmet and then falls? Bring it (JUST Kiddin ;-)

Hope you are doing okay -- I have the b/p being too high issue - and it's only getting worse now -- still fluctuates with low all in a day. Today I got like 146/106 when I awakened and now it's about normal - by night fall it will likely be 90's over 60's. There's lots of reasons for refractory b/p and the usual doc to help I guess is a nephrologist. They can determine if it's essential hypertension or secondary to some other issue with the kidneys etc... My heart rate is doing fine however now on Bystolic - though it's creeping upward as well. No biggie though - it's still under 100. If you do have insurance that has good coverage for Mayo - it did seem helpful to me & I'd encourage it. But the thing is even if you go there - there is no magic cure and you are essentially doing the same thing - after accurate diagnostics you are back to tinkering with meds. If you need the assurance that you are pretty much spot-on with your diagnosis -Mayo can check everything within a week or so if necessary. But as far as them 100% healing or curing - no they can't really do that....they are human beings helping you to feel your best just like the other docs (that are good docs). Sometimes it's healing just to hear you are not crazy - this is real - and be given options for treatment from a new set of eyes. For the price of a plane ticket - a room for a week or so - your meals .... you have given another good shot at your best health. Personally I think you are worth it as is everyone of us with weird symptoms that most docs just don't understand. But you probably know that even though they can tell you what they think - and prescribe what might work - this disorder just seems to never stay the same. Climate, emotional states, hydration, all of it seems to change the way we feel. The meds too - seem to be very tricky even for the docs to titrate - bringing you to a place where you might frequently be calling and expressing 'the latest' in utter frustration. I've been given some leeway to titrate minorly on my own -- but then again I'm a nurse and that's probably why. My doctor is actually treating me and he is from Mayo - so I do think some of them will offer to continue to help you with your symptoms rather than solely functioning as a consultant. How to know which will do which - I guess you have to ask them when you are there. I have no idea how long my doc will help me but my issues persist and aggravate the heck out of me in a very complicated case.....I think I probably wear on everyone...but heck all I'm doing is reporting what's 'not okay' - lately it's my ability to stand --- that's pretty significant - standing is a part of life, eh? Anyway - blessings to you - and if you feel it's time to seek out help from a tertiary care center or big place with a good reputation for tactfully and expertly caring for pots and associated disorders.... you'll know it and go for it. Really if you can afford it and insurance is good - I found my local physicians welcomed the idea that I was seeking wiser counsel from Mayo - they were at a loss. Hopefully ego's don't get in the way. Sometimes you can simply self-refer. If not - it's a matter of sending xeroxes through fax or mail of your most important recent records that demonstrate your Pots issues and where your at with it all.

I wasn't impressed with UCSF's Neurology Department ... I am impressed with Mayo Clinic Scottsdales Dr. Brent Goodman - several others here too have had wonderful interaction with this particular neurologist both here in the Southwest and when he was up in Rochester MN. So I'm happy you are now seeing some doctors in bigger tertiary care centers - your case warrants the best of the best -- but again take everything you hear with a grain of salt & know the path to clarity and accurate diagnosis usually includes a few speedbumps ... you probably know that. Sent you a PM... Good luck to you :-)

WOW - What a story.... I am sooooooooo thankful you are finally turning the corner....& things are normalizing. You have been through the proverbial wringer .... Rest Well... Keep getting better ~ I usually get the shot every year - but this year I was kinda timid and skeptical about the whole thing as there are new things in the shot etc... My new primary caught me off guard - asked if I'd had my shot - told her no - that I usually got it no charge as a nurse - but hadn't really proceeded being disabled etc...now. Before I knew it the nurse came in with the shot asking me to bare my arm - I was like ??? did as told and bam - I had the shot. No untoward effect that I could tell .... Still use the sanitizing gel and take precautions when out and about though. So glad U R okay!

Peter Gillham's proprietary preparation called Natural Calm again won awards for the year 2010. This is a magnesium supplement that you can purchase at health food stores or on-line on sites such as Amazon. If you haven't tried it - you might like it. It is a powder in a tall cannister. The idea is to make a soothing hot 'tea' or bevarage if you will ~ You take your dose - say a Tablespoon and put in a mug - then add your very warm or hot water. The mixture will bubble and foam rather furiously at first - stir and soon you will have your drink. They flavor it in a few different varieties - such as a lemon citrus or a raspberry -- probably others. You can certainly make it in a cold water as well though it won't fizz ~ As with magnesium in other forms - you can dose to your bodies ability to handle gi bowel symptoms. Start with the lower dose and titrate upward - the directions are on the label. It can help with sleep and relaxation etc.... It's easy on your body - rather pleasant to drink as supplements go. Sip this while soaking your feet in a epsom salts bath - you get a double dose of magnesium as magnesium can be absorbed through the skin to good effect with epsom salt soaks. That's all :-)

Interesting thread - cuz just this morning - got up as usual - was in the middle of what felt like hot flashes (I'm at that age I suppose) - I looked at my hands and they looked kinda red ... when I got into better light - my arms were mottled - and the hands - but not on chest, trunk, legs that I could see. It was a 'fine' mottling - not so large and course as the photos - but definitely noticeable - almost even flat 'rashy' looking. I've noticed that before in the last two years since this dysautonomia stuff came to the fore along with EDS dx. Flushing episodes began this past year - most noticeable within the past month. Guess I'll see if it happens only in correlation with the hot flashes or flushing or seems to be pretty much present much of the time. I've got SFN as well- fortunately it's mostly feet and hands at this point - but I'm never sure whats SFN or what's radiculopathy from spine or even tendinopathy at the shoulders - in the end I guess it feels like I'm not aging very 'gracefully' -- I have found in the evening to help sleep a hot toddy is delicious -- never tried that before - but an actual one ounce measure of whiskey with hot water, fresh lemon juice and a bit of splenda LOL! Of course I'm not driving or anything - but rather soothing the aches and pains and anxieties of the day surrounding bizarre health things.... Blessings to you!

Jana -- The Central Coast of California has that exact temperature range you speak of. I just moved to AZ from having lived there for 7 years. It is the absolute most boring predictable weather on earth. San Luis Obispo County - absolutely gorgeous - then right by the ocean. 60 to 70 tops I'd say about 90% of the time. Rare rain days in winter - rare colder days in winter 50's, rare hotter days in October 80's -- but the rare days are very rare indeed. It drove me bonkers as I love challenging weather and changing weather. The only way you knew what time of year it was -- was to go to your local pharmacy and hit the candy aisle! If the Hershey Kisses were gold, brown and orange color - it was fall. If the Hershey Kisser were silver, green and red - well it was Winter time -- If they were Pastel - Spring was in the air -- and if they were red, silver and blue - wow it was probably summer! Coming from the Midwest I had a hard time with that monotonous perfect weather! Now I'm in AZ and the winter is a bit cooler than it ever was in SLO County.... I've had to turn on my heat -- and well the summers are legendary - but I'm up for the challenge as they say. I didn't use heat or a/c on the coast. I got tired though of the fog in summer and the dampish air near the ocean - it felt bone chilling likely because of my arthritis.... Hugs me!

I need to try this again. Hard to get motivated for me. Anyway I was in a health club when I was at my weakest probably since all my issues began 2 years ago....and they had the olympic sized pool. I got myself a trainer and he would plop in the pool with me. I began by walking in the pool. I would stay in the lane by the wall at all times so I could grab it if I got symptomatic. I progressed to walking and doing exercises for a full 30 minutes. I was only faithful to this for a summer. BUT a few times I did become very symptomatic in the pool....mostly it was a bit of dizziness and feeling kind of weak. It was hard to walk once I got out of the pool -- and took all my energy to get changed in the locker room. I didn't feel safe to drive even. Would rest and have a juice or something at the health club snack area. When I felt well enough to drive - usually in about 30 minutes - when I got home by blood pressure was always low. It was actually these couple of incidents that had me get to a cardiologist and figure out how my blood pressure could go from super high - to these super low readings all in a day. In the end though I felt very very safe being at a club where people were about at all times, food and drink were available ~ and I had a relationship with the staff who knew I was trying to recover from health issues. I do believe I am worse off for not keeping it up - so on your post/thread perhaps today I'll try to search out a local pool again in my new city. Blessings to you always!