comfortzone

It's weird cuz I am at 'hot flash' age chronologically - but my mom died when I was in my 20's so I haven't anyone close to talk with about these. My symptoms first were a ton of sweating - but that was in corellation with just beginning Mestinon. I read later it can cause sweats. But when I finally got fed up with sweating - I stopped the Mestinon - and you guessed it the sweating continued! Then BAM the hot flashes. The first day of them was pretty much non-stop - all day long! Huge waves of massive heat - followed by sweats - lasting about ten minutes only to get about 5 minutes of freezing due to the sweating - and then again hot hot hot. Pretty miserable.....after that they were only about one per hour. I got back on the Mestinon and have stayed on it because it no longer really seems linked to these hot flashes and sweating. Hard to tell what comes from what with my b/p and orthostatic issues. They certainly haven't lessened any ~ annoy the heck out of me and I usually take things pretty much in stride. But maybe that's the irritability I've read about with menopause. When I seem to get the hot flashes if I had to try and pin them to an event - would be with any emotional responses to life things, or overduing it physically like when I try to work or do simple housework. A year and a half ago I had mild hot flashes during the winter - and I remember thinking - oh so this is a hot flash - wow they are no big deal at all - mild, once in a blue moon kind of thing. Now? Good grief - combined with sweating (where I've never 'sweated' as a rule before in life noticeably) it's pretty gnarly. You go from spontaneous combustion hot - to freezing and soaking wet all bleeping day long LOL... At night too - covers on, covers off, covers on, covers off........Maybe it's a good thing I'm single after all! Blessings to you!

Yes! I just bought yesterday a bag of Lavendar Epsom Salts! Dr. Francomano says that they help replete magnesium even through the skin! -- Thanks!

Just wishing you well and tons of hope .... as a peds nurse forever kids and teens change... nothing stays the same --- and just when you think you have it figured out - yep - things change again.... Same with EDS... A geneticist - hopefully will be one familiar with heritable disorders of connective tissue - EDS and the other groups as well. And the subgroups of EDS too. For a warm friendly knowledgeable geneticist who works with adults and children - I second Dr. Francomano. She's got a big heart and is very thorough in her measured exams. Another super nice guy is Dr. Brad Tinkle in Cincinnati - His book 'The Hypermobility Handbook' - is a pretty awesome collection of info - some young folks have reviewed it quite well too. Sure you cannot cure a connective tissue disorder - but with the varying and shifting symptoms in a day or week or month of an adult with EDS/dysautonomia stuff.....figure that and maybe more with a child/teen/younger adult... things just change. Hormones, growth, nutrition, emotional states, physical abilities and limitations.... it's a big ball of wax.... That's where experts like Dr. Brad or Dr. Francomano can be worth the travel to see -- they BELIEVE Pots exists - they believe you have a defect in your connective tissue that causes your ills -- not being overweight or a teen or the bazillion other things uninformed docs will use as 'fluff' translating to and "I don't Know" The fact that a person can touch their thumb forward to touch their inner wrist easily --- is abnormal. It's normally so painful a maneuver that police use it as a 'behaviour control' technique if you will -- see... it's the connective tissue that's truly not the same d/t the disorder..... But dysautonomia even with EDS - no matter the trigger or the cause -- I believe anyway -- allows tons of room for hope for feeling better once your care is managed by a knowledgeable compassionate clinician group. Sometimes it's several different disciplines or a 'team' -- that gets you through the rough spots. It sounds to me like you are really on the ball and I wish you luck gathering your info and your team. I personally believe I would be light years better in health had I had these things like EDS and dysautonomia dx'd in my youth. Learning from the EDNF page that has "handouts" from last years conference can teach you a lot - as lectures from our nations best - are presented. The younger you are to know these things gives you a chance to build good life long habits under a doctors and physical therapists care - to tone muscles to protect joints. Good nutrition to maintain optimal weight. Blessings!

My side effect with Neurontin was an increased appetite - and weight gain. Plus just overall feeling kinda strange. I've had huge doses and I've had low doses - for nerve pain in the feet from a small fiber neuropathy. All of the side effects were acceptable to me (accept wt. gain) - but my symptoms weren't much improved from taking the med so in the end I stopped... Dunno if it helps at all... But good luck to you :-)

Good Luck - What will be will be - and you can always appeal .... Just because your POTS is likely to dissappear sometime down the road as for people it does often enough - doesn't seem to be any reason to deny you benefits now when you do have it. Documentation the way I understand it merely has to show that you expect to be disabled for a years time. It doesn't mean you have to have been off work for a year - or that you have to be off for a year - just that it is expected to last a year or more. Then when it's granted - SS can take care of following up with you as to you doing better, staying the same and or getting worse -- the cases are reviewed by SS in different time frames based on your situation. Some folks will apply immediately as soon as they understand they cannot work as they usually do --- they stop working and get the ball rolling. Their advantage to doing this is that their SS benefit will be based on the monies they made while working in recent years to the opening of the case. Others that slow work to a dribble and make less and less for years - will then have less of a base to work from for SS to calculate their benefit. I'm not an expert but this is what I've read. Much of the time your doctors documentation - looked at by social security can be plenty informative and give them the gist of what's been going on the last few years in your medical record(s)....Since POTS vitals and numbers can be so shocking compared to normal vitals and such - I would surely hope your case is awarded you on the first try! Your records also will likely reveal any other concommitant things in your health history as well...SS looks at the big picture - all of it... Again the future is the future and no one can know or control the course of your POTS fully ... but if the fact is you are disabled from working full time - then you are - end of story. You can work part time a wee bit even when on SS.... & even take a try at full time work once you are feeling fully well for a bit of time.... I trust it will all work out as it's supposed to...hang in there! Good luck - keep smilin' :-)

LOL - Reen you are the best! Did you ever "disclose" your built in cat amusements to a physician? I'm afraid to tell mine cuz it sounds so so weird.... Of course he already knows that LOL... I'll give a look to the link you provided - thanks! Yes again tonight they are quite busy - almost to the point of foot cramps - but nothing horrible at all.... A minor thing to endure - but the meaning - I get hung up on so wanting to know the big picture if there is one... Yes perhaps a late-life vocation to dance! Wonder if that means I can have a few more chocolate kisses as my trusty toes are burning more calories than ever before. Poor toes - we take them for granted - and in my case they are speaking up about the situation ;-) Dysautonomia - EDS - and now twinkle toes - who'd have thought!

After struggling to get through a five hour work shift on my feet ~ I drove home and plopped down on the heating pad and took my meds for OI and pain etc... I had pulled off my sox and low and behold as I look down at my feet -- All 10 toes were moving all about on their own! Moving right to left, front to back -- every single toe! I remember seeing a few little twitches a couple years ago on one foot with a couple of toes and forgot about it. I was so shocked I wanted to take a video LOL --- So of course I check on the net and find a syndrome - no joke - called Painless Moving Toe Syndrome. With it's alter ego - the Painful Moving Toe Syndrome. OMGosh this syndrome was first found in the late 1950's I think it said. The case studies of the people with the Painful sort were very hard to read because the pain for the patients was excruciating and unrelenting. Now I know I hurt from head to toe so to speak when I make attempts at working like a 'normal' person...I end up limping, dizzy, so sore, nauseated etc... But it's not at all localized to 'ouch my legs specifically are truly hurting worse than the rest of me'... So I wouldn't even know if I fit into one of the two syndromes or not.... Just In Case you hadn't heard a "whopper" of a symptom group that would have most of the world view you 'a wee bit touched' --- I offer you this over the top silly symptom. Anyone else have toes that dance on their own with no music? Should we do a video? lol My research on the net had me stumble across various unnerving major neurological causations such as ALS and MS etc... Happily I have no fear of any of that and whatever is 'is'.... But for the most part I think the wiggly toes will just stay as they are 'wiggly' and life will proceed 'as usual'..... And of course if I learn anything valuable from a doc or two I'll let you know.... But just the thought of seeing my doctor for 'Moving Toes' is really dicey.... "Well you see doc ~ I was trying to help you out and discover new overlooked symptoms that would be the missing puzzle piece to my mysterious ailments...and AHA Just Like That! I watched my own toes for over ten minutes doc! Ten Minutes! And do you know they were just moving all over the place! You know doc? Like just wiggling all around to beat the band!" Meanwhile .............. Okay -- So seriously do any of you have odd twitches or what they call sometimes fasiculations? Thanks!

A disgrace to psychiatry as we know it. Yet I have an opinion of psychiatry today that is very very poor anyway. How in the world did your presentation fit the 'harmful to self, and/or others' how did this get you (this is assumption) in a locked psych ward? Committed? What was the diagnosis and based on what observations/symptoms? <--sry but c'mon! Religiousness vs. Religiosity? Did they think you were full blown psychotic? Enough so that you were forced by staff to do things against your will? A holy pious soul tormented because why? They heaven forbid pray, praise God, employ gentleness and compassion, forgiveness and healing, loving when it hurts in imitation of our Lord? And somehow pills were going to cure you from this list of perceived ills? Isn't that just grand - shove pills down a living breathing human's throat to fix 'em? You saw what medication had done to those people! It's quite enlightening how the world spends billions on pharmaceuticals for depression and anxiety - yet do we have any less of it around today? No! So what do they do to poor people who's brains are in a fog from the so called "medicine"? Add MORE medicine - yeah that ought to do the trick! Meanwhile draning pocketbooks and self-esteem, intuitive smarts and clarity of thought, polluting the waters with urine drug metabolites, filling the eco-system with prozac and all the rest. Ruining other perfect systems - body weight, kidney and liver function, ability to think rationally. On the positive side some of these meds are used today for medical purposes to good effect - but I am not a proponent for the pill-pushing psychiatrist community so prevalent today using meds as an answer to treat almost every patient they see in a day. Heaven forbid that insurance would actually pay well for a treatment plan for suffering humanity - that made sense! Such as tackling their issues with love and patience in a counseling venue - where the treating clinician was actually trained well in helping people in struggles - be they domestic partner issues, health issues, parenting issues, nuclear family issues, school and work issues. Let alone help for those in crisis from trauma in life of any kind - that require care in an intensely focused manner and program. But no - most often it is much more lucrative to dose out pills one after another -- each wreacking havoc in the brains very sensitive operation.... Pay a buck for a Prozac - or pay a good amount to truly help the person face to face with talk therapy or intensive care programs. They push the pills ad nauseum and flood television with commercials that children view of sad wind up dolls that need "cranking" to get through a day (gosh could it be from the 9 meds that dolls up to as of late?) It's disturbing to read how a professional in the healthcare field could be so naive (or stupid?) As to mix up and mistreat a person/patient for the fact that they nurture a prayerful interior life -- with someone who is psychotic with religiosity being the focus of their symptoms or psychosis. Yet a couple of years ago I had something happen that could have blossomed into a like experience -- for mentioning a major life trauma in my past in passing at an office visit. I had told another doctor this history and he was sympathetic and listening -- yet when I told a new doctor - the litany began to strongly suggest I see a shrink. My remedy to the problem was to continue on my path sure and strong in finding root causes of physical symptoms that lie in neurology, physical medicine and rehab and other medical disciplines. When I think back to that time - I thank God I didn't get 'forced' to do anything and had the grace to stick to my guns in viewing the physician with unresolved fear issues perhaps or other problems that lead to faulty clinical practice. Later I was blessed with insight into this doctors reputation in the community ..."she's an odd duck for sure" Thank God for that Judge who spoke His words to set you free - Freedom of mind, behaviour, all of it - purely free as it should be. Cling to your God and trust all is for His Glory. Many a saint endured like injustices ~ I'm sure they were looking out for you in your ordeal. Keep healing and keep your peace. I'm grateful you made it through intact and perhaps down the road this mess will prove out to have some purposeful use that you will become aware of .... I know you are courageous and I thank you for sharing your story. Hang in there!

Hi - and welcome... Perhaps you could make an appointment with Dr. Fraser Henderson in Bethesda Maryland. He is a NS who spoke at the 2010 EDS Conference in Baltimore about Neurosurgery and neuro issues in the EDS patient. I believe his practice is called Metropolitan Neurosurgery. Good Luck!

My neuro was checking my b/p because I've issues too -- lots of variability - often way too high - meds drastically reduce too low and it's a see-saw with activity as well....first standing it goes way up and stays up awhile --- stand though too long it dips really low and I get faint... Anyway when the doc did some orthostatic b/p readings in the office - he said I lost my pulse pressure. He asked how I felt. I said ok but maybe a bit lightheaded. He said my heart rate was 100 (after some med adjustments it had normalized in the 70's - so I was shocked with 100 with no activity - cuz that's what it used to be before we "fixed" the sinus tach). He said the most usual reason for this losing of your pulse pressure was dehydration. Told me to drink 100 oz. of fluid a day. Can't seem to muster that - I need to try harder though. For most of my life there's been periods where my numbers both systolic and diastolic were barely separated at all -- so I guess that's losing my pulse pressure -- my guess is that I'm chronically dehydrated as I find it hard to drink fluids. Salt isn't good for me with a baseline of hypertension - but I have craved it my entire life.... Just typing this I want to grab a bag of salty chips or pretzels lol Blessings -- I'm 53 and this hasn't really harmed me yet - so may it be so for you.... And honestly as angry as I got at one doc who told me to simply quit taking my blood pressure when he got tired of my calls ---- I've found that the less I take it - the more peaceful I am. Then when I'm ordered to take it daily it seems like a nuisance -- Because my pattern of high with standing always persists - likely a surge of catecholamines that is very robust with standing - and until I can figure out a way to get a gallon of liquid in a day - things most likely don't won't or haven't changed ... sigh... Feel Better Soon C... ;-)

I edited my scathing writing and apologize for it -- no need to doctor bash the ones we rely on for help as a profession. There are going to be all kinds of docs -- those that we find helpful and those we find less than helpful - May God bless us with a path that includes many more docs that are helpful! Sorry. I wrote the above because my original response to high agreement with experiencing blame the patient - was too harsh...way to harsh and I am sorry if the post offended anyone. I was feeling very empathetic toward the original poster and my anger at how she was treated lead to a dissertation as to how anyone might treat a patient so harshly...later came to think it was in poor taste~

I almost fell yesterday at work - seems to happen more often lately - where I haven't fallen yet - I'm kinda unsettled about not really knowing the reason why. Is it from my joint replacements, did my orthostatic issues kick in because I'm not drinking enough fluids, is it cervical myelopathy from my spinal cord getting smushed d/t arthritis? Dropping things - yes it's like the floors gravity just tripled in strength - stuff gets dropped frequently - and I can't even bend over enough to reach the dang things I've just dropped sometimes. It's crazy and I wish it would go away for you - it's pretty gnarly to have it as you know.... Almost went down to the floor with a pan of meatloaf weighing ten pounds in my hands ... that one I know was caused from a huge muscle spasm in my back. Yes I too have that losing things -- that happens several times per day - and no one is as distressed over it than I....docs have said its because you don't feel well.... Well I'm here to say I've 'not felt well' plenty of times in life and did not lose a single pickin' thing. This began at age 51 ~ sometimes I think I shouldn't live alone. I want to put an ad in Craigs List to hire a 'finder' Seeking: Someone to follow my footsteps all throughout the day that can read my mind. In reading my mind - when I say, 'okay I'll put this here so I don't lose it' -- you will write down on a huge dry-erase board... YOU PUT YOUR KEYS BEHIND THE COOKIE JAR BECAUSE YOU SPILLED MILK YOU AND DIDN'T WANT THE KEYS TO GET WET. That way when I put things somewhere - say an important bill or receipt or item of clothing ~ with a bit of anxiety - thinking, 'why do I care where I put it - it's 100% sure I will still lose this' You will have already written it down on that big dry erase board. When I'm ready to retrieve an item and recognize for the 100th time today I 'lost it' - I'll go to the board and breathe easy - Oh that's right - I put my glasses in that purse, my good pen in that car, my good jeans in that pile, my medication in that box -- Payment: Well actually you won't receive any - because as you know I also 'lost' my dang career d/t this dysfunction -- and hope I don't lose my current address as well... You will be gratified at the job though because I'm a dang good cook and you are welcome to partake of the meals I prepare - because you helped me find my non-stick pan and the dang garlic powder. Serious applicants need only apply ;-)

When people have their vagus nerve stimulated - you can faint. It's kinda common. Say you are a patient whose heart flips into supraventricular tachycardia - and your heart rate is 289... There are a few ways to convert the heart back to a normal sinus rhythm.... One of the ways is to have the patient hold their breath and bear down as if they are going to have a bowel movement - you know the valsalva maneuver. Another way to trip the vagus nerve is to have the shock of cold water to the face. On the pediatrics unit - a cold washcloth placed quickly on the kiddos face for a moment ~ these things can slow the heart rate and flip it to a normal rhythm. If that doesn't work then an IV with meds can convert to normal or lastly the paddles and electrical shock can convert. So my guess is that it may have been some kind of test or maneuver to stimulate the vagus nerve. If that's the case then maybe the faint was a vaso-vagal syncope... Usually lying down flat on your back - or even with your legs elevated can bring a person after a faint or just before a faint to feel better. The heart rate and b/p normalizes. Lots of things can trigger a faint....for some getting an injection, or a scary situation, some kind of trauma -- and lots more reasons... Hope you feel well now

I edited my scathing writing and apologize for it -- no need to doctor bash the ones we rely on for help as a profession. There are going to be all kinds of docs -- those that we find helpful and those we find less than helpful - May God bless us with a path that includes many more docs that are helpful! Sorry.

Hello Again :-) You might already know this - or maybe not ... but if we skip disciplines from Cardiology to Neurology - the question seeking answers about urination often enough are directed toward gleaning if you may or may not have a tethered cord issue. Also other issues of the spine sometimes have these related symptoms too - such as spinal stenosis and cervical spine myelopathy.... The basic Occult Tethered Cord Screening tool asks: Do you have: Urinary Urgency Urinary Frequency Urinary Incontinence Nocturia Problems starting the urinary stream Constipation Diarrhea Occasional incontinence for stools Decreased interest in sexual relations Difficulty reaching an orgasm Decreased sensation in the pelvic area Low Back Pain Numbness under the soles of the feet Keeps knees bent at night Low back pain, leg pain, or urinary symptoms while walking up stairs History of severe growing pains during adolescence If you score on a number of the above it is then that sometimes the doctor will order urodynamic testing for tethered cord. It's an invasive procedure in that I believe you'd get a catheter for the test - it measures things like residual volume after urination etc. I've not had it - when I tried to get it done locally - the hospitals acted all confused about it - as if it had to be done in a urologists office????? I think for sure Mayo does them with no confusion lol.... So for what it's worth I share the above ... take care!

I wonder how she (this rude lady Neuro) feels when she sees her patients in the patient room on the left just down that Neuro Dept. hallway. Seems I always get that room with my awesome Dr. Goodman appointments....the man is Saintly. On the rack right there in the room are Mayo Clinic written patient booklets on POTS, Orthostatic Intolerance, Dysautonomia and such for you to take home and read. There are employees (techs, docs etc.) who do dysautonomia testing right there on the third floor. It can't be easy nor comfortable to have someone such as the way you describe this lady doctor is - as a co-worker. She sounds like a real pain in the behind for everyone...and unfortunately sounds like she's used the powers of persuasion and other tactics to get others on her "you are mental if you think you have Pots" bandwagon. The way all Mayo staff can read each others notes and charting by a simple click on the computer ~ must be pretty interesting at times lol... I mean these docs (like Goodman) that help POTS people are spending their one-only precious life helping a very vulnerable patient population and they do research and write papers - every bit as much as this woman who says its all in your head! On Guard! Is there a link to the article on Conversion Disorder and Somatization for us to all read what you are privvy to Issie? In seeking diagnosis and helps for EDS (and the pots-like stuff) I've heard personally from the geneticist physicians (our nations very best EDS docs) how very frustrated and angry it makes them to hear time and time again how patients are told 'it's all in your head' 'it's psychological' 'you are a hypochondriac with anxiety and depression' In fact even in one of their write-ups on my own case they 'teach' the primary doctors in their dictation by sharing with them that many a patient has been wrongly diagnosed prior to getting the correct diagnosis (with anxiety, depression, emotional issues, poor mental health). I applaud them in doing that - it's healing for the patient to be validated and it hopefully teaches if not frankly shames the docs that don't approach the difficult or complicated symptoms of patients with humility and respect for the patient and the difficult nature of them seeking answers (while feeling dreadful to boot). Thanks for sharing Issie and let us read this article/paper!

Oh My Gosh -- My heart just BROKE in two reading your post.... I have to run to an appt. now (Weight Watchers - sigh) ... I want to write more about this later. Just know you are an awesome worthy wonderful warm beautiful person who's just had a very bad shake in a run of simply awful heartless, know-it-all-but-are-really-stupid-physicians. I mean really stupid. There is tons of hope for you - you just need a chance with a good good doctor.... they ARE out there.... they WILL help you. Don't give up -- Rest and heal from that wicked experience - I could literally feel the trauma as if I were in your shoes - you write so well. I do gotta run - but know it's not you - it's just rotten luck with less than worthless physician care -- I mean the first rule is do no harm - and they have harmed you -- FOUL she cried! Chin up - Much better interactions with docs are in your future...Much Better. Big Hugs!

Thank you for your explanation & encouragement. I'm over it now- until I have to face it on 1/26 (Rheumy Appt). It's all words & mostly Greek to me I think we are ALL searching for THAT doctor you describe. I am blessed to have a smart inquisitive rheumatologist batting for me. My son also has a wonderful ANS doctor. Perhaps we've used up our allotment??? Hugs- Julie I love that you have a rheumatologist that is proving to be rather brilliant in her assessments and observations etc... Truly it was a rheumatologist that initiated my investigation into joint hypermobility. I had absolutely zero knowledge of it -- In me or as a health concern. How funny to have all these joint replacements - hurt from head to toe in midlife - and have this doctor I had just met (after seeing 3 other rheumatologists without ideas or answers) simply ask me how far I could bend my pinky and my thumb LOL.... I was like ????????????? Hahaha! What does that have to do with the price of tea in China kind of thing.... Then she checks elbows, knees etc... I mean I was not at all athletic or graceful - quite the opposite - yet here I was as bendy as gumby at over 50 years old and never - ever knew it or suspected it. So yes -- you are so very intelligent and articulate - I am praying you will continue to meet the docs that are as bright and inquisitive (as you) & as they need to be to tease out the best diagnosis and life plan ~ You are one amazing person from what I've read and am happy to meet you here. I got to thinking the other day that my "New Year" was ruined on January 1 - when a doc calls ON New Years day and leaves a voicemail that I need a neck fusion at three levels or I'll be a quadrapalegic.... I had hoped for a "ignore health issues" and get on with life year. But ultimately I had the wrong focus I think. I am absolutely to be grateful for all my blessings - that I'm alive to have a New Year - and that my attitude is likely everything. So I did a quick about-face and decided I'm happy I have a brain to make decisions in my health care (which is no to surgery lol) - and that life always has speed bumps and rough patches - so I need to turn this around stat - and smile at the absurdity as best as possible - enjoy my day today and everyday without letting the cloud of poorish health to blanket me in sadness or despair. I believe 2011 will be our best year yet -- deep down I'm beginning to understand that my true happiness cannot be based on the ups and downs of health, finances and all the other stuff I've worried myself sick over. Maybe I'm a bit old to learn this - but truly I haven't had these challenges before.... so on we go! :-) Hang in there -- Persevere -- your intution, gut feelings and keen intelligence will help you get to the bottom of this.... proud of you!

Not POTS related - but I have had to use the wheelchair services of the airlines many many times due to severe arthritis. I have also for years had to go through security in a special manner - either due to severe mobility limitations or simply because I had joint replacements that set off alarms. It's good to seek out your best fare - Hotwire, Expedia, Southwest or Allegiant Air often have amazingly good deals. When I went to Mayo - I bought a one way ticket as I had no idea how long they would keep me. This worked out well - as the spacing of my tests and the weekend in there - had me there a total of 2 1/2 weeks. When it seemed I had my final day at Mayo wrapping up - I made the one way ticket purchase home. Even when you purchase the ticket online from other than the airline directly there is a spot to put down your needs as in a wheelchair (I'm not informed about oxygen though as I never used it). To be doubly sure - you then call the airline you have your travel with and make sure that they note you need a wheelchair. They will ask sometimes depending on the airport if you can ascend or descend stairs. This would be in airports servicing cities using small little planes where you walk onto the tarmack and go up to the plane by stairs. When you also make known your seat preference online or over the phone - as soon as you check in at the airport - check in with a real live person and tell them that you have special needs and require a wheelchair and would like seating up front close to the exit. An hour before boarding often they will bump you up to a more comfortable seat close to the main exit instead of way in the back of the plane when you ask. Also once on the plane - you will on some airlines give the flight attendant a slip of paper that notifies them of the wheelchair need at your arrival town. Some but not all airlines have this slip of paper. Even so - tell the flight attendant as you are seated on your flight that when you arrive you will need a wheelchair. It seems redundant to keep telling them this when it's already in the computer - but I can't tell you how many times I've been told to check and double check to make sure it's waiting for me. When it's time to leave the plane - sometimes the wheelchairs are not greeting you and sometimes they are. Simply let them know it's a "must-have" and ask them where you should wait for it's arrival. Sometimes you'll wait on the plane till it comes - other times when I could walk short distances I'd walk up the tunnel to the airport doors and wait in a chair till it came. In some instances if I had a tight connection I'd tell the airline staff at the desk that I need that 'cart' or shuttle that whizzes around to get people to their gate. The wheelchair rides to different connections can be short (as in right next door so you barely need it if the gate is close) or long as when the connection is in an entirely different terminal and on another floor. They will take you to baggage claim and help you wait for your rental car shuttle or anything else you need most often. I keep a fist full of single dollar bills so that I can tip the transporters accordingly - it's not mandatory at all - but it is a service provided by the airport and if I have them lugging me and my stuff from here to timbuktu to get me to my plane on time - I do pay them a gratuity. Hydration (you may bring items on the plane once past security) is important ~ diversions such as snacks or light reading or an ipod with music, credit cards and cash both for purchasing snacks or headsets - some airlines now only accept credit cards for food and drinks - where before it used to be only cash. I bring both. If you have a laptop you enjoy - some airlines have in-flight internet. I used it on a "freebie" special once and it was great - most of the time though you have to pay to use the internet if the plane offers it. Neck pillow if you need it - favorite snackie things or magazine -- bring it all in a portion of a carry on and you will be ready for anything. Allow the flight attendants to assisst you -- it's not only their career - but it's something that most of them enjoy. The ability to help someone is rewarding. Ushering in the masses can get routine....so do tell them your needs and ask any questions you need answered. A seat up front close to the attendant might be ideal - you could ask for it when you first arrive to check in -- and again at the desk at the gate. Enjoy your travel as best you can - and good luck at Mayo! Oh and security is pretty tight now - I have had the privelege of being wheeled from the first check in place at the airport where they scurried to get a chair - to being rolled up to first in line for the security check when in a lot of pain - I'll never forget that kindness. So if you cannot wait in lines and need the security clearance -- walk or have someone wheel you to an FAA attendant and explain the situation - you should be cared for accordingly. This is totally manageable ~ keep a relaxed open mind - people are there to assisst you - but it's almost never as you imagine! Even so you should do fine with a positive attitude and your creature comforts at hand.

It does very much sound like a siezure. A pediatric or adult neurologist is a great start. Also taking him to an ER or calling 911 if the siezure doesn't stop as they have been. The airway is the most important thing as well as protecting from injury. I agree your written description is perfect and should be a part of his chart. Also post siezure many patients experience that post-ictal sleepiness and that sort of 'out of it' period. This could help diagnose too. My guess is that a thorough workup would be prudent irregardless of what's been done before. Maybe including hospital admission for testing. Kids at 15 are a vulnerable lot as it is with peer pressure, new stressors, hormones - the whole lot of it happens to kids whether they are healthy without special concerns or if they do have health concerns. It would help everyone's confidence to have this diagnosed and dealt with appropriately so fears are squelched and normal as possible interactions at school and home are the usual. Hope you get your answers quickly and accurately!

Hope you are doing okay ~ Just wanted to mention that as a nurse - forever the machinery spits out these diagnosis by computer and often they have nothing whatsoever to do with the truth of the issue at hand. We are taught to ignore what the print out reads if that makes any sense. In my own personal experience - I had a Top Ten University do an EKG that spelled out the horrors of an enlarged ventricle - dysfunctions here and there..... I made sure to get better control of my blood pressure after reading that - which is always good. But anyway had a whole batch of testing afterward and absolutely zero of it confirmed anything of what that EKG read/reads. So again I don't know if that helps or not - but the doc signed off on my EKG that he agreed with what the machine read and blah, blah, blah..... Only to have my other EKG's since read wonderfully normal. Granted I do have the obesity, the high blood pressure, the borderline diabetic numbers -- and I work on that as I can daily -- but even with all of that and EDS - my heart (thank God) is so far doing well - on meds sure - but even so -- I'm doing well....... I can only hope that doc didn't mention anything about heart failure pending due to dyastolic dysfunction because he truly didn't believe it true and perhaps had the same schooling I had that the EKG computer readouts and other high tech equipment readouts - some of it is there to ignore ... the test is for the physician or clinician to figure out for themselves... Maybe it's that stage one dyastolic dysfunction is essentially as the cardiologist said as well.......after one has so many birthdays these things happen perhaps ~ seems he may agree with the machine? You don't put a lot of stock in his opinion so maybe you have a gut feeling that what he said is not accurate all the way around. It's sad to see so many clinicians get burned out on the rut of 'normal' problems that they totally disengage with the interesting ones they can learn and grow from - the reason hopefully they became a doc to begin with. Well I'm happy nobody is sending you off to an ER or taking you to an ICU -- whatever the issue is - it will be ironed out - I'm confident of this....there are some real intelligent physicians out there ~ your case is striking enough that anyone with a real vocation for "doctoring" would be honored and delighted to assisst you in diagnosing the issues and treating you appropriately -- I too will pray you get the answers sooner rather than later....

Thanks for the note -- I truly appreciate the anecdotal evidence from your friends and family ... I learned today that my neuro wants me to get a second opinion by a neurosurgeon at Mayo Clinic - so I'll do that next week. I learned from looking on line that patients have great ratings on this new surgeon I'll be seeing soon - so that's a bit of a relief. I have no funds for this consult and have Medicare only with no supplement (they don't allow disabled Medicare patients to have supplemental insurance in Arizona!) So hope he doesn't order a lot of expensive testing -- it will be good to hear what he says. Meanwhile I told the neurologists nurse what the MD doc said and all he said was that on CT there did not appear to be anything that would endanger me to the point of quadraplegia currently - and to get the referral. We'll talk some time after that. I also will see my pain mgmnt specialist on Monday and run things by him as well as those guys are into spines quite a bit it seems. I did tell the NS that my case is Complicated! What caused what - and what will the surgery do? One voicemail I have states that the surgery will have me feeling quite a bit better if all goes well. See my issue isn't pain. Although I am a Chronic Pain patient - my neck has never been any worse than the rest of me with EDS.... So I wonder if the surgery is primarily to limit further compromise to the spinal cord and any resultant disability -- yet when you read the film report it again only states 'possibly mildly compressing the cord' -- I think I have more of a cord compression issue in the lower levels of the lumbar spine to be honest! But he knows what he's saying I'm sure and likely is basing things on my symptoms and on the true measurements of things and all that doctor stuff that I have zero experience with deciphering. I do trust him --- I think his reputation as a fine surgeon and fine gentleman is solid and I'm so blessed toe be his patient.... So it will be interesting to hear how Mayo responds .... the other surgeon suggested I could choose another to do this surgery - as if anyone else would agree I need it.... Time will tell! I have heard the same - that fusions alter other areas - and with EDS -- we are 'altered' already lol - with things bending too much.....so this could simply be asking for more trouble.... Hopefully I'll get some good questions put together for the next phone calls and appointments --- Thanks again for writing!

Yes that sounds like a good idea. Sorry about your arm too! Well I just got off the phone with the NS doc and he said I needed surgery. When I stalled mentioning a host of complicating issues he inquired as to why my hesitancy.... He then explained a normal spinal canal is about 8mm - with the area in question on one level of my neck he said it's 4mm. I then said - so what if I just do nothing at all about it. He said I'd have increased clumsiness of my hands, increased trouble with walking, some urinary issues like incontinence and frequency and constipation....eventually I'd be in a wheelchair and not long after that I'd be a quadraplegic functionally -- then said "not that I'm trying to talk you into the surgery at all - this is just what you are dealing with" I told him I needed to consult with my local physicians before giving him my definitive answer as to yes or no. He said there's only one or two other docs in the US he'd trust with this surgery because of my EDS - and I could choose them - but he feels he's the best qualified in the US to do this. So yes just as you say....who's right? Who's wrong? I hope to be able to discuss this with my neuro doc soon - so he can 'prove' the doctor right or wrong based on his continued clinical exam and perhaps hopefully further diagnostics - such as SSEP's perhaps? See this surgeon really only met with me for about ten minutes or so before dashing off to another emergency surgery. He doesn't know all that much about me. But anyway -- I'm sure I'll have a list of questions for him the next time we speak.... sounds like I may not get "better" so much as I'll prevent further deficits perhaps. And why hasn't anyone thought this a big deal? As you say - it's because perhaps it's NOT a big deal --- or others just minimized a pathological condition - because like so many with EDS, POTS etc... "we look so good!" LOL -- gotta laugh - I am confident that it's all in God's hands and if I do have surgery I have a very competent man to give it a go. No guarantees - this much I know fully. I could end up worse.... So on we go!!!! I hate the thought of a permanently 'stiff' neck that won't bend.... is that what fusion does? Good grief!

I had cervical fusion at the c7/8 area. The surgery itself was a huge success. However, I believe the trauma of the surgery is what triggered my dysautonomia, as I was perfectly fine before. I was in constant pain in the upper back, neck and head prior to surgery, and nothing worked. I could literally feel relief while coming to after the surgery. The downfall..... I no longer have a life due to the onset of dysautonomia soon after. Not sure if this helps you or makes it worse. I guess what I would say is if you allready have dysautonomia, then maybe the surgery could alleviate some aspects of your spine issues. Hi! I'm curious - if you feel like answering - would like to know.... was the fusion d/t a specific problem such as joint hypertrophy or herniated disk or osteophyte formation... or a combination of those things? It reads on the CT that I 'might' have some 'mild' cord compression better assessed on yet another MRI.... I thought you could live with a degree of cord compression just fine? Maybe not. I read some surgeries are better with a posterior approach and others better done with an anterior approach. Did you have plates and screws and hardware to help stabilize the fusion till it set? I worry about pain post-op now as well as a host of other things anesthesia related as no one knows why my case went so weird with the knees... knee replacement surgery is bad pain ... if neck is the same or worse - I will not consent unless it's life threatening. I sure do hope your dysautomia lightens up and fades away.... I've read it can and does do that in a wide number of people ... may it be so for you!

Hi Again.... Truly my neck sorneness is minimal and was never even investigated until a year or so ago when I began dropping things and having lots of arm tingling and numbness etc. on the left side. My arm ortho doc did a couple of tests (Spurlings and some other) & said your arm issues are from your neck - and sent me for the MRI. When I had that done - and went in for a f/u visit - he sent me to neurosurgery - but I chose a spine ortho doc instead. This was the guy who told me my issues weren't from my neck. The arm ortho just shook his head & didn't understand - said, 'boy they still haven't figured you out yet have they' So over a period of a few months all the symptoms in my arms naturally resolved without any intervention. My neck did get sore - but I just guessed aging was the culprit. I tried chiro this past summer - 2 visits and got worse with pain and back spasms and got lightheaded and nauseated after the treatment...never went back again. I now have PT who has been focusing on my Thoracic spine as it is tender and tight with spasms. Nothing really has helped in PT for any length of time it seems (save the one guy back in CA who did an osteopathic manipulation that cured the whole mess of spasms - the chiro adjustment ruined that and I swear I'll never try another...grr) I just got back from the pain mgmnt doc's PA who obliged a thoracic spine MRI - just in case there's some big reason for my symptoms found that way (though I doubt it). It seems really very confusing when I read info from the spine universe website on cervical spondyl-something myelopathy.... Like you should rush into it for the best outcome.... So I've been hoping to speak to my neuro before the surgeon calls me back. I know I'll get nervous on the phone with him and kind of scared. I don't really know what questions to ask... Except about stats on function in daily living post op just as you say. I'm not doing all that wonderful now trying to work ... I am now actively seeking a desk position as the cooking is really beating me up bad. I'll have to ask about what happens should I do nothing at all to avoid surgery. A three level fusion sounds like I will not have any ROM of my neck afterward doesn't it? Sounds dreadful honestly. And with EDS does anything really 'hold'? And yes the trauma of another massive surgery could set me up for some serious disability if I tend to not do well with them as is the case. Dysautonomia type issues really flared up after the knee surgeries. I'll have to practice what to say -- I'm usually too talkative. But now I am sort of afraid to answer the phone when I see the docs number! Thanks for listening and commenting - it is appreciated very much....