comfortzone

The Ehlers Danlos National Foundation has a website and forum where you can learn things. There's a good book by Dr. Brad Tinkle who is a geneticist at Cincinnati Children's you can get on Amazon.Com for around ten or so dollars.......It goes over all the body systems that EDS effects -- it's truly a wonder collection of all the latest knowledge. Also just published was a sequel to this book called the The EDS Handbook - Dr. Tinkle is a great resource... The Hypermobility Association is UK based and you can read or participate in their forums free I believe -- the US EDNF has you contribute to be able to post in their forum I think. I was sent to orthopedic surgeons, then to a podiatrist, my primary doc didn't know, saw oncology, a couple of neurologists and in the end it was a rheumatologist referred by the podiatrist that found out what she thought might be my issue. She sent me home with a couple of copied pages of an article and at my follow-up appt. I told her I identified positively with almost all the article. I told her my Beighton score was 6 (thumbs, pinkies, elbows) minimally and likely higher as I'm actually older and sometimes you lose your flexibility as you age. Anyway she was the ONLY one who ever mentioned it and even since then NO one knows what it is if I tell them. However now since many of the main authors, scholars and researchers are saying EDS-HM and Hypermobility Syndrome are one in the same -- I tell the doctors I'm referred to I have Ehlers-Danlos Hypermobile Type and then they say they remember that from med school. I was met though with resistance from the medical community in that they'd say you were diagnosed "ONLY by a rheumatologist?" So I went to a Geneticist - and they confirmed the diagnosis. But honestly though they were geneticists I had much more up to date info than they -- and they were kind and competent -- but not known for their specialty in EDS or collagen issues. I mean they have to be to a certain extent to the rudimentary stuff -- But a pediatric population based geneticist isn't always well versed in EDS. Some with great reputations are quite NOT skilled at caring for it at all. Since there is no cure anyway -- I found it best to watch medical videos, even patient created videos on U-Tube can be enlightening -- do my own research and reading and educate my team of care-givers the best I can. Not all want to be taught, not all are even believing at first. But in the end -- it is what it is -- & they are your team .... they want you to be as healthy as you can be. It can feel humiliating to be belittled and such even when some docs know about it -- a dermatologist locally was supposed to send a biopsy for EDS -- he cracked jokes and touched his toes and pulled the skin out from his neck like it was all funny.... I was disgusted. The best you can do is to educate yourself and stay connected. The internet is a wealth of info -- the names most often I hear that are seemingly reputable in research and interest are Dr. Bird, Dr. Grahame, Dr. Tinkle, Dr. Bravo, Dr. Levy, Dr. Levine I believe. Bravo is working in Chili, Bird and Grahame are in the UK ... Who I see now for this diagnosis is physical therapy (I'm a lifer it seems), primary care doc, cardiology, pain management, rheumatology if needed, orthopedic surgeon, as it seems to take a good group to help with all the issues -- I also see gastro and need to see someone about sleep and autonomic nervous system things yet... Good Luck to you

Hi everyone... I have an upcoming appt. with a doc at the Scottsdale Mayo clinic who is a neurologist - a Dr. Goodman I believe and I'm wondering how to prepare for it. My doctors are glad I'm going because they say,"we don't know what to do with you or how to best treat you"... What they are treating....... In a short form - I had a ton of tests over 2 years time to figure out why I'm stiff and painful with activity intolerance, have widely fluctuating blood pressures, run tachy most the time, respond weird to beta blockers tried for slowing my heart rate and helping the bp. All began about 2 years ago after bilat knee replacements... We've gotten so far Hypermobility Syndrome -- and what seems to be -- the frequently encountered dysautonomia type symptoms. The scheduling woman said to bring discs or films I have......well I've had an MRI of the neck and the L/S spine -- would those be good to send? I've had one of the shoulder too but I don't think it will help. I've got some copies of EMG's of my arm's and legs too from a year ago. Tons of labs -- but really I don't want to complicate things. My labs for 2 years were seeking for something wrong -- Nothing was ever wrong. Even this years normal labs were good once again.... I recently had a stress echo, a regular echo, 24 hour holter and notes from my cardiologist visits over the last couple months. I'm seeing a neuro doctor for ANS issues -- will he look at my cardiac stuff? I have notes from two other neuro consults -- but they don't look great -- meaning the one guy at a university said he thought my weakness would be helped by seeing a psychologist. Then the local one said go see a psychiatrist to prove that guy is wrong. I went to my primary and she said to just ignore them --- she knows I'm quite sane. So I don't want to have a doctor pre-judge me by what they wrote -- yet they are neuro -- and this Dr. Goodman is neuro. My hope is to get testing to prove out my best guess. That I have dysautomia linked to Hypermobility Syndrome or EDS-HM as some docs call it the same now. Then if the testing is proving it -- then I can get adequate treatment. What tests will Dr. Goodman want to see? What tests should I expect him to order? I would think a tilt-table test would be very beneficial as I'm at home able to get orthostatic hypertension readings ? But I'm new to all this... I got way too low bp on the new beta blocker Byastole -- So I'm not taking it == only took one pill and was low for 4 days -- Now I'm way too high again and feel like crap .... I wish I could feel better.... ANY help would be appreciated. I'm anxious about this and want to make this easy for me and for the good doc....

Hi -- I wasn't diagnosed with Hypermobility Syndrome aka EDS-HM till 51 years of age. It was all the bizarre joint pain all over my body while recovering from bilat knee replacements that had me seek out what was going on. I had hip replacements as well a couple years earlier than the knees. On exam I have a Beighton score of either 4 or 6 depending on which opinion you read in my med files. My revised Brighton score is really high -- so it becomes kinda cut and dry when you use either of those 2 quite widely accepted criteria scales. But to my knowledge I have never had a frank awareness of any dislocation. It's kinda late to tell if my knees hyperextend - but my hands do all the tricks and wrists and spine....I was told my hip sockets were shallow - which is common for this -- yet I wasn't aware of them ever popping in and out of place ... but yet my surgeon pulled out 80 year old hips during the surgeries. I do not have any of the soft velvety skin or stretchy skin issues some have. The best book I've read about this is Dr. Brad Tinkle's book (from Cincinnati Children's Hosp) - Issues and Management of the Joint Hypermobility Syndrome and Ehler's Danlos Hypermobile Type -- It's a smallish book - clear and concise. A new book by him to follow up on that one is the Hypermobility Syndrome Handbook or EDS Handbook -- It just came out -- I'm going to order it on Amazon it's 19.99 I think - And the other book was about ten dollars. Dr. Tinkle writes and compiles data nicely -- does our country a great service in tackling our bendy issues. I've emailed him and he's sent a quick note back...He's the keynote speaker for this years EDS Conference in Baltimore....it either just took place or is about to. Anyway lots of people are bendy -- what is the mystery is what makes a person who is hypermobile suddenly develop the painful pain in the rear "syndrome"......... For many it was precipitated by some kind of major stressor such as pregnancy - in my case the surgeries.....in others something else. I can sublux things - and physical therapy usually makes me "worse" = such as recently I had "hand therapy" to help with painful hands and developed full on trigger fingers on both hands that required cortisone injections to quiet down.... It's just this sort of thing that frustrates the PT's and OT's and makes life challenging. They simply MUST listen to the patient -- they usually know what will work or what will make them worse. We're famous for getting all the "itis" things - tendonitis, bursitis, etc. Now I'm investigating the dysautomia stuff as in some studies up to 70-80% of EDS patients have POTS or related issues -- and I seem to run at a high adrenergic state -- tachy etc... Blood pressure issues etc........

Yes count me in too. The instant I open my eyes is the worst moment of my entire day - every day since my knee replacements almost 2 years ago. I have pain in every single part of my body. I am very, very stiff and sore. I move so incredibly slow it takes a seeming lifetime just to get to the bathroom -- I move to the living room and sit in a lazy boy chair and pray and try to remember that this part of the day does not last forever so I try to count blessings and buck up. I drink one cup of coffee and on the days I work -- by the time I make the 1/2 hour drive and maneuver out of the car into the workplace I am just about getting good -- and then I'm okay. It to me sounds like a lot of drama -- but I live it everyday and it IS dramatic....before I knew I had that Ehlers-Danlos Hypermobile Type I used to be so terrified about it all. Now I know what it is at least. What is so very difficult to figure out now is the dysautonomia as it effects my activity tolerance. Four hours at the work place and then it's an absolute mandatory time of 2 hours to lie down to equilibrate I guess from standing for 4 hours. I barely feel living as you say when I crash into the bed -- but after a couple hours I seem to be able to get a few more hours of activity at home in a day -- and go for a fitness walk. Now though my blood pressure is outrageously out of control with wide swings.....so that could be contributory to me feeling nauseated and lightheaded even in the good parts of the day -- I have faith that the doc's will be able to help me here eventually -- till then I guess it's trial and error with meds etc.. Thanks for sharing your story

Your post had me smile -- big time :-) So much of your life story had an heir? or is it air? of familiarity about it -- and I'm sure many could pull out some things they could identify with. I'm happy for your joy in things changing for the good! It's true nothing stays the same in life -- we keep moving forward toward healing and toward our dreams. One day at a time -- I know I tried work one year ago and got let go -- they said I was an excellent nurse and that they loved having me on board -- but I just couldn't keep up in the end. I took a homecare position thinking I could hide my disability somehow (four major joint replacements in 3 years left me a wreck) but alas I'd be dripping in sweat in someones living room - put the pulse-ox on my own finger after the patient and see my heart rate at 140 - Just standing! So I graciously accepted their decision - & they said if an office job opened up they'd give me a call. Well a year of further testing ensued - & I decided to try work again -- but not as a nurse. I just can't be physically strong and 'available' in mind and body to care for others in that capacity - yet. Chronic pain fatigues as you know, the meds leave you foggy, and the dysautonomia has a mind of it's own. I was seeing 3 patients a day and the norm was 6 or more. Now those 3 got exceptional care LOL -- as I could never 'rush' anyone ~ the struggle to just get out of the different homes furniture or to doorways up flights of stairs or down a ravene was ridiculous for me.....So I only write to share what it was like for me to go back to nursing....it didn't work. I expect to continue to feel better and I work with PT or OT to get stronger every day of the week...I just need to be patient as I try to get a correct diagnosis for my dysautonomia sx's, and more important a correct treatment plan. Then maybe I could try again. But till that time I am a cook working on my feet just 4 hours a day -- I had gone to chef school years ago. I drive home and have to lie down and recover a few hours -- But just working in itself seems to be healing.... May all your dreams come true and congratulations on that wee one -- such an inspiring story it really touched me! Thanks so much for writing.

This may sound quirky but I'll mention it just the same.... ( I have the gut issues as well - since mid 20's - extensive diverticulosis throughout, chronic constipation - now worsened with chronic pain med regimen, very acidy stomach now on Nexium twice a day...esophageal spasms) But anyway there is a product on the market that some of my caregivers in my area recommend that's over the counter Natural Calm or Peter Gillham's Natural Vitality Natural Calm or just calm. It states it's a relaxing magnesium supplement. It is a white powder in a cannister - you stir from 1 to 3 teaspoons into water and drink. Hot water and you drink it like a tea -- but it is very effervescent so use a large cup or mug -- Or you can mix it in cold water and it won't fizz too much at all. If you go to Amazon. com you can purchase it -- or your local health food store if it's a good one will have it. If you look at the different flavors and varieties (some have added calcium etc.) you'll see that the consumer reviews are outstanding on each and every one of the varieties. People report help with back and disc troubles, menstrual troubles, menopause symptoms, mom's giving to children for constipation, chronic severe constipation for adults ~ insomnia, nervousness, muscle and joint issues -- you get the idea.... Anyway it's healthful, organic, comes in different flavors - is labeled The Anti-Stress Drink balancing calcium intake and restoring healthy magnesium levels....... For me it's helped with sleep - not 100% but sometimes it amazes me -- I'm one who can stay up with no sleep all night -- like my engine just will not shut down - this helps.... And also for constipation. I think of it as a milk of magnesia lite... I take the max dose 3 tsp. and the next day I get relief.... So for what it's worth -- you may want to check it out on Amazon for the reviews -- I just bought it because my occupational therapist said it was amazing how helping magnesium levels makes people feel so much better all around....(I pay about $16.00 for a 16 oz canister locally) Blessings......

Hi Just Me Again.... My internist agreed with me stopping my metoprolol because it did nothing for my tachycardia and nothing for my blood pressure in the couple of months on it. She said yes to seeing Dr. Goodman as, "no one around here knows how to take care of what you got".... Then she said how about we try Bystolic to slow your heart rate and get your high blood pressure under control -- we'll leave you to sit down and rest or lie down if you begin to dip low....but hopefully this will agree with you. (I'm also on Diovan 320mg and weekly Dyazide). I mentioned catapres and she said it didn't make sense for a fast heart rate with high b/p...I told her but dysautomia patients sometimes are treated with it with success....that's when she was glad for me to go to Mayo...But she thought this should slow me down enough and decrease that high b/p hopefully not crashing me down low when I get bouts of the low b/p. I'm to start with 5mg and then go to 10mg if I feel okay So just curious if anyone here has experience with this drug.... Thank you! nowwhat! (<= see I say it first so the doctors don't have to!)

For many years I have been looking into just such things such as prolonged trauma ~ and health. The group/s that I've studied are those that have been recruited into destructive/damaging cults. Cult members can sustain several multi-faceted injuries over the course of the years they are involoved -- of varying types and severity & it's disheartening to read that those that escape and achieve freedom -- have to deal with the fallout in their bodies/minds. The fact that there is much ignorance in the medical and mental health community about cults and the effects of cult involvement.......only makes the escapee's recovery more difficult if downright convoluted or damaging -- though it's assumed the helping professions desire to help. You could include in this any person involved in a high demand group or even in a one to one domestically violent relationship. Yet even in working with the world's best scholars about this I have yet to find available studies on the physical symptoms where the causation could be related to sustained abuse or abnormal stress over years and years.....Proven out in scientific research. In fact I may see what I can do to get more involved -- in learning about post-trauma effects on the ANS......and things such as this. I'll fire off a few emails & see if I can find something out -- that I can share :-)

I just spoke to the scheduler for Dr. Goodman in Scottsdale and if you need to get an appt. to see him it sounds like now's the window to do so. When I told her I was a new patient needing help for dysautomia symptoms she told me that Mayo neuro doesn't do that any longer. I insisted that they did and Dr. Goodman is the man... She then looked into things further and found that she was not kept up to date -- She read that yes now he is back and you can schedule for dysautonomia type issues. She found it crazy she didn't know this -- said he used to be neuromuscular, then general neuro, then dysautomia -- and the appts. I guess are booked accordingly -- She said it was very unusual for me to not have to wait up to 6 mos. or even a year to see him. But something else must have happened -- that was the move from Rochester I guess.... She had to book me under a certain type of appt. I guess to have it work -- which of the three I have no idea..........but anyway if this is helpful to anyone - good!

Hello everyone again.... Interesting ... I do take Flexeril -- for about 4 mos. up to 3 times daily..... If there's a chance it would be helpful I am free to discontinue it -- it's just for my comfort. So perhaps if that'll decrease my b/p I'll give it a go. I also just got off the phone with the Mayo Clinic in Scottsdale to get my appt. with Dr. Goodman. I got it -- but as soon as I mentioned my EDS-HM the office scheduling dept. was quite clear that they don't deal with that......I told her 'no worries....that dx is a done deal -- it's just that studies have shown up to about 81% of joint hypermobility syndrome patients have dysautonomia. So at this point it's assumed but not proven that's why I have it'. She then asked me to mail my neck and spine mri results, my recent ER head CT results - all with the actual films or disks, and my EMG testing - and any pertinent consults ... When I mentioned I see cardiology because of this - she was not really interested in my holter or echo's etc. I feel so confused now in speaking with her I don't know what's on..... In my mind it's multi-factorial -- Joint replacements = some nerve damage and some weak muscles in my legs.... Hypermobility Syndrome = explains pain and why the joint replacements and some of the fatigue. Dysautomia coincides with hypermobiity syndrome but is manifest in cardiac symptoms. I have cardiac symptoms - my cardiologists notes and testing to me are very important - or should be very important for a dysautonomic specialist.... She asked that I plan to spend a full week in Scottsdale in case referrals were needed. I can do that of course - but I'm getting scared now -- like I'll be hit with another -- she's crazy -- why did she fly all the way out here for a little bit of high blood pressure or labile blood pressure? Can anyone tell me if they think I am doing the right thing in this? In the meantime I'll give a trial of no Flexeril....and cont. follow up with my primary care doc tomorrow and my pain guy. I feel anxious as regards this...........like -- should I see a Mayo cardiologist rather than a dysautomia specialist? Does anyone know what Dr. Goodman does at a new appt.? Will he diagnose dysautomia by ordering tests to prove thus? Such as tilt table etc..... Or will my blood pressure issues, and tachycardia being the norm for me -- be enough for him to make suggestions? If there's a test that can show up in blood or urine that I'm hyperadrenergic - my doctor could maybe order it to help things along till my appt. at Mayo........that would not only r/o pheo but point to something else that's treatable. Oh....I guess there's a rare window now to get yourself an appt. now at Mayo with Dr. Goodman -- they are just now getting their act together in finding out he's back and willing to take on patients with general neuro, neuromuscular, and dysautomia as well. There was confusion when I called and she found out there were a few appointments left in upcoming months....where it could take normally 6 mos. to a year to see him......If you are so inclined to go and see him -- I would bet now's your chance from what the scheduler told me. She herself told me he did not do dysautomia -- I challenged her with my information from here -- so she looked him and up and was shocked to see that he was indeed doing dysautonomia again.....in Scottsdale. Thanks everyone..........Nowwhat!

HI .... Well honestly I have never heard of pain medication increasing blood pressures....in my experience pain medications helped blood pressures of patients experiencing pain - as the pain markedly could increase their blood pressure -- as the pain symptoms diminished their blood pressure would decrease....& of course pain meds would be held if a patients blood pressure tanked for use of them. So is there something I need to know about dysautonimic disorders and the people that have them and how their bodies respond to pain meds? thx!

Hi everyone and a huge thank you for your thoughtful responses - I know they take time out of your day & want you to know I'm grateful to read them. I do take Diovan 320 mg (the ARB)....& I'll ask my primary about returning to the daily dyazide. True I was turfed to cardiology for the occaisional 'lows' that were pre-syncope spells while standing on my feet working 4 hours..... Then was reminded of my tachy state by the holter with baseline HR100.... After that ER trip and rethinking things -- I'm not taking the metoprolol again - I'll see my internist tomorrow and run that by her....it didn't in the end do much at all - & if pulling it gave me that horrible high bp state and severe headache I just don't want it. Dyazide doesn't effect me noticeably as regards these sx's -- but I think it may have contributed to my b/p helps -- as my b/p got higher off it and the metoprolol wasn't a good trade off. My pain management doc I see this week too. He's experienced with Catapres as it has other uses in medicine and treatment than my issues.... He might just have the nerve to go ahead and give me a trial on it .... I'll review with him all that you've taught me here and all I know of my 'condition'.... EDS-HM with labile b/p and sinus tachycardia -- & increased bp with rising from sit to stand...bouts of presyncope with standing too long. In another state back east in my late 20's was when a doc said, 'you run at a high adrenergic state' -- when I questioned my high HR all the time -- so 30 years ago I was tachy and I don't suppose it's a pheo now (as it wasn't then) - but I do now flush quite often in a day and aslo for the first time in my life I sweat! I have never/rarely ever broke a sweat. Now just walking and window shopping I feel drenched and my face can need a wipe with a tissue... Maybe it's hormonal -- I give up - I'm 53.... And headaches come a couple times a month -- I think b/p related -- but they'll r/o pheo for certainty I suppose. Firstly though I see my primary tomorrow -- I'll show her the labs ordered by cardiology for pheo and ask her to order things that she might be knowledgeable about as regards this.....Did I read here that you can test specifically for a norepinephrine level? In addition to the cats and mets? Any lab suggestions before tomorrow I'd really appreciate to help this along.... I guess I'd have to agree that a hyperadrenergic POTS diagnosis might fit my set of symptoms -- but how to get a doc to pull it together with a "plan" is like for many very challenging when the docs that specialize in this are few and far between. I'm going to look into that doc mentioned that's moving back to Scottsdale....perhaps...a Dr. Goodman or something like that if need be. I'll read to my doctors the info you've given me - such as catapress and indications for .... & mestinon. I would love to feel better and get back to a reasonable state of vitality and energy -- I hope I answered your questions....thanks again

Thank you very much -- I'm going to see my primary on this Tuesday and ask her what she thinks -- about a referral -- also may ask the cardiologist how he feels about me going there. Around here with me they just kind of act like -- yeah, so it's difficult -- no we cannot do anything about it -- so why go through more tests....labile B/P and tachycardia -- get used to it.... I kinda think when it's disabling they should have more interest -- as in I used to work 12 hour shifts on my feet and now can barely work 4 hours without a mandatory laying down to recover type scenario.... I feel there may be something someone could suggest....I do believe worse come to worse my pain mgmnt. doc would refer me -- he's been my rock really -- he does more in just listening to this unraveling tale of changed functioning in life after some major surgeries than any pill has done thus far. I have hypermobility syndrome and they often get these crazy cardiovasculare symptoms I've read.... I'll check back in here after I see what my group of doc's here think about me seeing Dr. Goodman - I'll also see how my insurance deals with Mayo Clinic ---- Your response is so so appreciated - :-)

Thank you for your kindness in answering. I did ask the doc about catapres which I think is clonidine and he said, "why would I give you another medication when you sometimes dip low?" It gets frustrating. I would like to think that giving the patient with a good understanding of his issues - his own license to titrate meds to effect would be reasonable with these touchy cases. Meaning it would seem that it should be okay if a doctor knows that some meds are needed just some of the time and not needed each day.... I just don't know at this time which meds might help me..... The doc pulled me off my diuretic except for once a week now -- my primary is stumped why the cardiologist did this when she sees my continued high blood pressure for 'most' of the time... The metoprolol has been for just over a month - what I noticed at first was that my true resting heart rate initially seemed lower - say in the seventies and I hadn't seen that in years... But just standing it would still be about 106, walking the 1-teens, and then a brisk walk the 120's.... Walking uphill in the 150's... It essentially has done nothing at all for improving blood pressure -- and his pulling of the diuretic has left me with higher pressures than the pre-metoprolol.... But he pulled it due to 'I don't want you too 'dry' as it could contribute to your feeling 'faint' after standing long times'. I'll look at what that other med you mentioned is.........I'm happy you wrote about labile blood pressure -- I did have a cats and mets test 20 years ago in my 30's and it was negative and the doc said way back then - hmmm....you just must run at a high adrenergic state - asked if I wanted medication to slow my HR and back then I said, "heck no!" because I was young and healthy -- just annoyed with the tachy hr.... Now it's becoming an issue with symptoms and I just wish someone knew what was going on and how to help me help myself :-/ thanks again ;-)

Hi -- Needing some guidance if you can help..... I've got that joint hypermobility thing -- or EDS=HM type and my b/p and my heart rate are giving me fits. I initially saw my primary for a baseline HTN <---- hypertension - with bouts of low b/p mostly happening after working on my feet for four hours as a cook. My b/p is high -- with the diastolic or bottom number or most important number never under 100........ Often 106 to 112....... Such as 152/110 =---> But because I also dip down low my doctor sent me to cardiology When it dips it's after working and I am very symptomatic and it takes 2 or more hours of lying flat in bed before I feel 'recovered' for lack of a better word.... The lows are in the 90's over 60's and I feel dizzy. I was on Diovan alone at first but cardiology added Metoprolol 50mg because my holter monitor showed I am tachy with my heart rate most often over 100....... Well I'm afraid of having a stroke with that high blood pressure most all the time. Then cardiology did a stress echo today. I was told to stop my Metoprolol for 48 hours prior to the test. Well my blood pressure shot way up to 177/122 and I had the worst headache of my life night before last. I called the oncall doc who said take the Metoprolol and go to ER. I did and everything gradually got normal - HA went way, b/p down to 144/106 - and they were happy I didn't have an aneurysm -- but no one much cared about the blood pressure. So I go have the stress echo today and the doctor says it's a good healthy heart. No issues. I told him I'm worried about a stroke running around MOST of the time with diastolics in the 100's. He counters well you also go low and I don't want you fainting at work. I said good point but I usually only dip low once or twice a week after working on my feet -- the majority of the time I'm high and worried about it. He said you are an unusual case and he didn't know what to do -- he says you have labile blood pressure and I'm not going to medicate you more. I asked him if he knew of other workups for labile b/p -- for say -- tumors etc.... He asked if anyone checked for Pheochromocytoma -- I said no. So he ordered catecholemines and metanephrines one by urine the other by blood. He clearly said he's not an expert on hypermobility syndrome issues. Okay that's about it -- All of this seems to me to be related to my EDS-HM perhaps with pooling etc.... But I wish I knew who to see about it - who IS comfortable seeing patients with crazy labile blood pressures and odd diagnosis..... The neuro doc locally and at a major center miles from here both uncomfortable with it - neuro stating she treats it only with MS etc.... The major medical center thought my fatigue was psychological (prior to my holter etc.) I wish I knew what labs to ask my primary doc to order or to suggest to order that might go with a dysautonomia diagnosis.......... Do you have suggestions for labs? Do you have suggestions for medications for me to run by her? A doctor recommendation? Without the Metoprolol just standing my b/p was 120's -- but the doctor doesn't seem that impressed or he's hugely uncomfortable with dealing with this........And to be honest the 50 of Metoprolol isn't helping me symptom wise -- I still get tachy with standing -- I still get dizzy from standing too long -- I get orthostatic hypertension --- I have high uncontrolled blood pressure. Who do I go to with this?? Again I would fly anywhere to get someone who can help ..... I exercise daily - I've dropped 20 pounds in the last couple months , I eat healthy and my regular labs are very good. I need to keep losing weight -- But in the meantime I'm worried about these widely fluctuating blood pressures and nobody yet cares to do a tilt-table test -- they believe it to be overkill or perhaps ridiculous -- like so what? I tell them there are multiple kinds of dysautonomia caused by a million and one different reasons -- may I please get a true diagnosis so treatment is appropriate? They say no to this test...... Any suggestions appreciated -- thanks so much -- I'm losing my patience and I need help!

I am going crazy and driving my nice doctors crazy with my symptoms and their lack of knowing what to do.... I would love to hear more about this doc........is this doc neuro? cardiology? or something else? I can fly to see him if he is taking new patients in a practice he ?plans to open in Scottsdale......wow that would be great if he knows about this kind of thing..... It would only be a short plane trip to go there from CA..... thank you

Aside from the electrolyte issues ....... any number of reasons would have me getting to another physician to get answers. A person who is perpetually nauseated -- who on occasion will have the nausea then progress to vomitting up food taken in.......needs to be evaluated. I'm happy that you have been scoped to rule out strictures.....did you also have a swallow study to see what the food does when it's in your esophagus? Did you have spasms? Anyway vomitting can stimulate the vagus nerve I believe and that stimulation of the vagus nerve can cause dizziness......or a vaso-vagal response where you feel faint. I've only known this to be of temporary effect however and not a lingering pre-syncope for a couple of days time. The blood pressure can dip and leave you feeling lightheaded momentarily. I'd get a full workup from a primary care doctor with labs, urinalysis -- the works......

I've been seeking answers for this for a couple of years too. Mine started after bilat. knee replacements on the heels of 3 yrs. prior bilat hip replacements. I never got back to life as normal.... But rather grew to have pain globally -- found I had hypermobility syndrome. To me that still didn't explain that after 3-4 hours of activity in a day I am compelled to lie down (or fall down lol). My recovery can take as little as an hour flat on my back in bed or as long as four hours or till bedtime. But my duration of functional life -- is baffling to me as well. I had the insult of a neuro doc telling me it's all in my head - ouch. Still on a quest for answers I had a dizzy spell at work (after 2 years off work - took a job for 4 hours a day 3 days a week to get back into the world if I could).... went to cardiologist who found avg. HR of 100, runs of atrial tach, a few pvc's. He put me on 50mg of Metoprolol in addition to my other bp medication (My blood pressure seems to be varying widely -- mostly high -- but occasionally dips). It's done nothing really and I still get over 20 mmHg increase in my diastolic b/p from sitting to standing.......I called it orthostatic hypertension -- my cardiologist just ignored me and put me off for 6 weeks. I kept calling him begging not to be left with these staggering high and dangerous b/p's for over a month......so he then says in addition to my regular (normal) echo I need a stress echo. I have mentioned I need a tilt table test and work up of dysautomia from hypermobility syndrome -- he isn't acting on my nudges to help me investigate and treat it. I have the stress echo on the 8th...my appt. with him on the 12th. Then yesterday got dizzy again at work -- drove home -- and my bp was in the 90's over 60's and I felt sick the rest of the day and into the night. So occasionally the fatigue correlates with blood pressure but most of the time it just is -- and always is -- and no one able to help me uncover why. My heart rate with normal activity is about 120's.......with sitting around the house about 95.........when lying in bed it can be in the high 70's and low 80's with the Metoprolol on board. I'm confused and disgusted as I am able to function normally for portions of the day -- but I guess I would call it an exercise intolerance........has me floored and incapacitated each and every day -- yet when recovered by lying flat I feel great again. Dunno if mine could be mitochondrial -- I do have the varicose veins, blood pooling, arms & face flushed, esophageal spasms, gerd, small hernias, but heck I'm early 50's -- could it be just I'm getting old I'll wonder! YES -- it can try your patience minimally........ YES to prayer and acceptance and wisdom .... & YES to valuing yourself enough to seek out answers to your problems for workable solutions so you can function your best........ I really do pray you get help --- so you can cope with your symptoms in a hopeful more peaceful way -- you are young so you have that on your side for sure......... Good luck! You are wise to tap into the people's wisdom here -- I assume you've already had work-ups -- negative for some of the more common reasons for unexplained fatigue? Hang in there!

Hi ~ I've had a lot of palpatations separate from episodes of pre-syncope and more recently I've had them with pre-syncope as well. My best advice would be to see your internist or primary care doc -- or if you have a good cardiologist you could touch base with them again to report and update them on how you are doing. It may be that they do a 24 hour holter to see just what is going on - a glimpse of a day in the life kind of thing. Mine showed runs of atrial tachycardia -- not terribly long ones - maybe 10 beats or so a few times and then a baseline of sinus tachycardia with an avg. heart rate of 100. Some PVC's thrown in there for good measure lol... I got put on 50mg of Metoprolol with no discernable improvement -- just normal daily activities have my heart-rate watch read 120's....any exertion such as walking uphill -- 150's. I'm not sure my cardiologist is the one for me as I've been working on my b/p issues and symptoms with this one for three months and am going nowhere fast. Yesterday at work got faint-like and nauseated - spent the better part of the evening in bed with a low b/p....90's over 60's........Yet most of the time my b/p is way too high....diastolic frequently above 100 or 110...... It can be frustrating for sure to get the tests you want done -- and frustrating when your case is not an everyday occurence.....I have that hypermobility syndrome or EDS-HM and it's crazy for sure. Good luck to you -- hopefully you aren't troubled by your symptoms for long or if you are you get the answers you need!

Hang in there - you are in a caring community here......... How is that you have come to fall down 4 times recently & it is not due to vertigo or dizziness? That is truly alarming to me and I would hope the doctors would take that very seriously -- you don't want to be adding injury to yourself or others in addition to the puzzling picture thus far....... Glad you are able to see the specialists you need to see ~ it sounds as if you are in capable hands as they are getting right to some in depth diagnostic testing to help you get a clearer picture of what the nature of these debilitating symptoms are about. If possible at all do do your best at relaxation and destressing in ways that have proven effective for you.......you are a strong intelligent person having a tough time of it lately -- this will pass - nothing stays the same that's for sure......... No matter what the results of your testing are it's good news -- good if they find something in clear cut explanation and good if they find nothing serious at all..........if it's something they will help treat it and help you to cope -- if nothing is found serious you can check off all the litany of fears you had as now being unwarranted and you can again seek ways to best cope ... You have found again - a great group of people for support. Best Wishes!

Sry I am no help really but I am truly curious that with it being an overriding symptom of concern causing discomfort and cosmetic differences what the physicians attribute it to.....It sounds like nothing I would assume at all -- but would get detailed explanation from her caregivers and I would then go further to a big tertiary care center or university based medical center if you don't get satisfactory answers. As you know this demands attention - especially with the meds she's on and with her age having her wanting to be active and fit in with all that teens do on a regular basis. Exercise is so important to essential health for a lifetime you wouldn't want her to develop an aversion to activity because of swelling etc... I do get venous pooling -- and the normal annoyance of fat sausage like fingers with a lengthy walk....more rarely swollen ankles on a hot hot day if I walk for exercise. Hope somebody can offer insight here for you......hoping it's a simple problem with a simple solution or something she might out grow... Happy 4th of July to you!

Thanks firewatcher ~ I do get discouraged and almost fearful of doctors ~ even my same ones I've had for years ~ because of this odd thing....... This morning it's more of the same ~ it looks like the morning should be your highest since you haven't had your meds in 24 hours ~ yet this thing happens any time of day ~ in bed supine 138/95 sitting on edge of bed 149/108 and finally standing 149/114 I expect she'll just turf it back into cardiology's court as she won't want to step on his toes ~ So I think I will additionally call the pediatric cardiologist mentioned here in the doctor list -- and see if he see's adults with this........It would be a 2 1/2 hour drive ~ not too bad. If he does then I'll call my cardiologist and see what he thinks about my idea of seeing a specialist in addition to him. They will and do try to brush odd cases under the rug ~ I pray I get these pressure's under control ~ The metoprolol is definitely helping my heart rate ~ this am in bed it was only 76 -- a number I haven't seen in years and sitting 77 and standing 84.......so not bad at all ~ I love it .......... but it's again my worry of permanent problems from an issue that should be temporary.......such as a stroke... thanks again :-)

Yes I will do this tomorrow. It will be a full week on the higher dose of Metoprolol ~ without B/P improvement .... this does concern me ~ and a higher risk for silent stroke with those whose bodies overcompensate with sympathetic outflow where your b/p goes up with activity --- up a lot more than is usual for activity...... You would never catch these things if you didn't do a fair amount of checking and monitoring ~ thankfully I'm able to do this and am quite comfortable doing so. So we'll see what she suggests.....! Thank you so much for writing.

http://www.reumatologia-dr-bravo.cl/MDEngl...uspectJHSMD.htm Here's one link ~ for the joint hypermobility syndrome that Dr. Tinkle states is the very same thing as EDS-HM type ..... It's by Dr. Bravo from Chile.... The history of MVP and sudden early death in your family would also be a reason to rule in or out EDS in any of its types ~ the concern would be it being the vascular type in your relative ~ where the aorta may consist of part aneurysm in some folks ~ an echocardiogram can give the doctors measurements and such to declare no aneurysm or widening noted. They are followed by cardiologists ~ but as the others mentioned it is a Geneticist versed in EDS that's preferred. Any doctor that you have a good relationship with should be able to help you get the ball rolling for this.....it was actually my rheumatologist that suggested it for a diagnosis for myself and gave me articles to read ~ I agreed and went to Genetics for a confirmed diagnosis. It was confirmed but almost as a diagnosis of exclusion ~ meaning everything else possible was ruled out ~ that was a lot of testing -- and it seems like you've already been through a lot of those early hoops ~ so now it's time to nail down that diagnosis so you can all have some peace in understanding..... Doctors visits are a pain and with a rarer condition quite literally they can be so distressing ~ but if you are armed with knowledge you should do fine. It's helpful to get a 3 ring binder and collect from every office and hospital ALL of your daughters test results. Everyone of them. Get consult doctor notes as well. Then seperate the info in the binder as to labs, xrays, mri's, consults, physical therapy notes, list of medications, current articles you collect........that way you have all the information in one handy book for transfer to and from your various appointments. By all means run it by her POTS doctor! Just tonight I've read about 4 articles on how the joint hypermobility syndrome (again now being viewed as EDS-HM) and POTS occur together in as much as 80% of study subjects........ Other articles say 63 + %.......So yes there is a correlation that a POTS specialist might well know about. You could have that doctor refer you to a pediatric geneticist that is versed in EDS. Again not all that easy to find ~ but they are out there. In fact I believe that by going to the EDNF.org website you can read the names of the doctors that are presenting at the huge upcoming conference in Baltimore and maybe find one that way ~ The presenters are going to be holding a clinic at the Conference itself as well for people who have found it difficult to find a treating physician. By having your daughters POTS doctor review her EDS symptoms and your concerns and family history (which is SO important to geneticists and genetic counselors) ~ he or she will hopefully be able to direct you to which doctor geneticist to see and where. A thorough history and physical exam (the Beighton Criteria and the revised Brighton Criteria) -- they measure everything lol.... a diagnosis should be able to be made. If then it's some of the more testable types of EDS are being viewed as likely ~ yes now there is a blood test ~ and a small skin sample for biopsy may be recommended. The collagen lab that tests for EDS is in Washington State at the university and they have genetic counselors that sometimes will talk to you if you have questions about an order from your doctor for a biopsy......There is no 'test' for the hypermobility type to be done in a lab. Good luck to you :-) The grinding and popping, the subluxing and or dislocating are commonplace .... as I'm sure you've read. There are videos on utube from EDS programs and EDS patients ~ take with a grain of salt ~ but some were helpful for me to watch.