comfortzone

Well again good luck - and you can hopefully always reschedule the date of your test if you feel not adequately prepared. Basically though I'd get a copy of the short report dictated by the doc who did your old colonoscopy. That will have in it the medications given, the time given, the route, the dose....& then you will also be able to read the nurses note too - such as did they give you a second dose because you were hurting ... or just what happened. It should include your vital signs also - and how you recovered. Once you obtain that record from his office - then you can show it to your doctor or your gastro doctor - or their nurse or nurse practitioner or PA...however it works. You can tell them unfortunately you had a tough time of it and you'd like for this round to go better - and hopefully they will reassure you with what the 'new' plan will be for this go around.

When I had an intractable pain experience in my first knee replacement - you better believe I told my surgeon that we will not be going that route again - because I will never consent to the other needed knee replacement. Well a couple of months passed and I knew it had to be done - the other knee. So I did my homework and found many people did well with a femoral block and an indwelling catheter and pain pump for a day or two post op....It was a bit of a big deal cuz I live in the middle of nowhere ... but they had just hired a new anesthesiologist who was an expert at these at the hospital - so he taught everyone (including me cuz i wouldn't fall asleep lol) how to insert one.... Anyway things went worlds better...I was so grateful ... but I still needed a ton of post-op meds (perhaps due to hypermobility syndrome where locals don't work so well even if the surgeon floods an area with local). Later I had a battle with insurance as they didn't want to pay for the fancy anesthesia - and in the end the very kind anesthesiologist overlooked a near 900 hundred dollar charge....

So while a sigmoidoscope is not near as long or labor intensive as a big surgery --- they still must keep records. The options for anesthesia for that are probably limited somewhat in that basically I believe it's only conscious sedation. So Versed so you don't know what's happening or remember what's happening - and a pain reliever if it should be painful. The procedure itself seems as though it should not be painful - so having a doctor you trust is important. So that if it is painful - or you feel pain - you should have a nurses hand to hold and to talk with the entire time...telling her or him how you are doing -- Ideally you will be totally unaware of anything at all d/t the Versed. It should be quick and non-traumatic actually. Hopefully you can speak with someone at the hospital - either the endoscopy nurses or some physician that does endoscopy to find out what your options are concerning having a pain-free test with vital signs that behave the entire time - in spite of your health conditions and your experience in the past. Hang in there - :-)

Thank you very much!

I was on three b/p meds for being too high - but when I got super low - I called and they now have me only on the Beta Blocker Bystolic at just 2.5mg. So no more Diovan and no more Dyazide. If though after three days of only the Bystolic and I start to go up again too much I'm to add half a dyazide, and maybe 80mg of Diovan. But so far the Bystolic alone is handling things pretty good. My morning high is now120/80..... much better -- it's just that I have to stay really hydrated with G2 and water or I do get too low. I exercise by walking & suddenly I'm new to sweating - which makes hydration even more an issue. I am supposed to stop salt I guess except in an electrolyte sports drink - no seasoning food with salt. In the end I was told I'd probably have to tinker a lot with my meds as I work at this weight loss and orthostatic intolernace issue. Thank you for sharing your story - I really appreciate it! I saw coconut water at Trader Joe's last week and thought that was an interesting idea for sure. I wouldn't mind the fluctuations in b/p if they weren't loaded with so many symptoms....I feel horrid with the highs (150's over 110) and I feel horrid with the lows (80's over 40's) - and they can all happen in a day -- day after day -- sigh. Hopefully as I lose more weight I'll take readings that are more normal and less problematic!

Hi there -

If it were me -- I would look at my old records and tease out which medications were administered to you and their dosages - and your response to them. So a very common combination given to people is Fentanyl and Versed. The Versed helps you to have brief amnesia - so if anything is painful you do not remember it when dosed appropriately. Then the Fentanyl is a pain reliever they put on board as well.

I would take that record to a doctor I trusted - I hope you have one now? And just have a chat with them. You could say to them, "I was very very groggy for over two hours after I finally woke up and that took two hours" Then you could tell them how that concerned you. Like you were scared, or couldn't function normally for days - or whatever your concerns were. Then I would have that doctor then put it into the context of how your typical days vital signs go and how this is likely from dysautonomia diagnosed etc.... Saying things like, "I have concerns about the amount of medication they give me - I don't need much at all. Or "I would like a different less potent medication" Hopefully that doctor could communicate with the gastro doctor with recommendations.

In any event I think it would help you to actually speak to an anesthesiologist or a concerned primary care doctor about this so you go into the procedure confident that your concerns are truly taken to heart - as they answer your questions and perhaps network with your gastro doctor.

If the doctor is worth his salt - he will be having the procedure in a clinical setting (hopefully a hospital) that is well equipped to handle any emergency that should arise. If you require lots of time to come out of the medications effects then have your test first thing in the a.m. AND have the doctor review with you the steps he is taking to address your concerns from the beginning....such as supplemental oxygen or whatever he thinks is prudent.

With my "hyperresponsive" type constitution - I had a double dose of Fentanyl and Versed and was not alseep even for a second. I watched the entire procedure on the monitor and was fascinated. Same with when they put in my Femoral block for my knee surgery - they tried to knock me out and all I did was learn how to insert the block in the thigh - with all the other anesthesiologists. YET in spite of being too hard to put down - I did get lows in blood pressure post op with the knees........not the colonoscopy though.

So I never really do anything until I am fully comfortable. I've arranged consults with radiologists to discuss varying opinions - I've met with doctors frequently to get all my concerns addressed so as not to overwhelm them at one visit. In the end it's your body and you have to be willing to do what you think is best for it.

The colonoscopy with the conscious sedation was a breeze aside from the prep -- but I never slept - If you feel as though you may need intensive type care post procedure -- then by golly tell someone this and get these concerns addressed -- you should never be blown off -- even if it does 'annoy' a busy doc. He should respect you voicing your past experience - so he can best serve you as comfortably and safely as possible. Maybe speaking with his nurse or nurse practitioner could be one way to gain more information....& confidence that your concerns about your body reacting differently than they present in the materials is heard.

Don't be railroaded....act on your smarts and intuition and get things ironed out ahead of time so you can get your procedure in peace..... good luck to you

After a virtual colonoscopy I saw a gastroenterologist for the results. There were problems in the sigmoid colon and for about 1 foot above that. It is tremendously painful for me to have a regular colonoscopy and brought him proof from my previous doctor and pathologist, yet reluctantly agreed to have a sigmoidoscopy, feeling I need to know what's really happening to me.

I have OI, both NMH and OH and I tried to explain that I couldn't tolerate the regular type of anaesthesia. He hadn't heard of Dysautonomia and was either annoyed or disinterested when I tried to explain how I thought I must have died when I didn't awake for 2 hours after a regular colonoscopy in 2000.

He promised to use just a bit of relaxant, but I had given consent that 'just a bit' of relaxant be used for the virtual colonoscopy. That 'little bit' made it almost impossible for me to get up, change into street clothes. My son had a transport chair waiting for me right outside the change room and I fell into it and then into bed when I got home. My mind was 'out of it'.

I had info saying what anaesthetic is best for OI patients but he knew nothing about it and again dismissed my concern. I told him about my constantly low BP and said it would have to be continually monitored and that I'd need an IV from the beginning and he did agree to these conditions.

Still, after 2 bad experiences, I'm scared that the regular anaesthesia might really kill me. I'm new to Toronto and can't just find new specialists easily. I think to myself, "If I do die, at least I had my son sit in on the consult and he can verify everything I told the doctor".

Can someone please advise about what to do in such a situation? Thank you to any or all who can help.

Mary P

Yikes -- Crashing immune systems does not sound like anything anyone should have to endure - but alas I guess it does happen. Well I guess when things get there bleekest the only way is up up and up --- cheers to everyone feeling better = much better - soon and that the wellness continues either slow and steady or the much desired fast and furious....to your improving health everyone.

Seems there's a few peeps that have Arizona as a home base.... Would any of you that have a good internist mind sharing with me who they are? Either by PM or here on the forum? I got hooked up with good Physical Medicine and Rehab doctor, great neurologist too - and a good rheumatologist, and a good nephrologist -- all at the Mayo Clinic - who said they would see me if I move to the Phoenix/Scottsdale area. But it's a huge step to move and it's very important I find a good Primary Care Physician.....I see mine at least once a month as I have so many health issues that need tweaking. I have a window now where I have good insurance and if it's a Mayo Clinic internist (for locals) - that would probably be even better for continuity of care. But it's not necessary to be Mayo. Thank you! I'm hoping to find one that is up on orthostatic intolerance kinds of things too

Hi Caterpilly ~

Yes you are a warrior when it comes to perseverance - and it does stink that you've had to be so -- I bet you are tired. Real tired. However under that tiredness is an incredibly strong person..... I know you never wanted to know you were that strong perhaps .... but you are. I understand and empathize with the doing this all alone part of your story. At age 50-ish I have four joint replacements that about killed me to endure -- and now a host of other things including orthostatic intolerance which brought me here to this website. The thought of having even one of those re-replaced -- well I just cannot go there.

Yet objectively we know I will likely to have not only one - but all four of them redone in upcoming years. That with small fiber neuropathy, Hypermobility Syndrome, wacky vital signs, chronic pain -- well to me the future looks bleak. Very dim - and as you nobody to help.

The way that I cope is to keep up with my spiritual life endeavors - which for me is weekly church and daily prayer...though just recently could I even attend church and to do so is difficult getting in and out of pews etc. But if I keep reminding my self to do things to bolster my faith - and not give into temptations that I am handling all of this 'alone' -- it seems Providence follows me and guides me.

Do I make mistakes as regards how to live? Which docs to see? How to deal with disability in my life? All the time. Yet I choose for that to not be my focus - my focus instead is to acknowledge how my never give up spirit will keep me in good stead. Persevering is my road - because in that I can never lose.

Then I like to remind myself of how I am doing at any exact moment ... for now a roof over my head. For now making payments on my medical debts. For now able to walk. For now I have food. For now I have some insurance. There are a lot of things I need to gratefully acknowledge as wonderful gifts -- though it's sad to think others are worse off than you - you know there always is.

I do struggle with the anxieties that this brings. Being alone and aging with all these issues can take it's toll on your psyche. I've cried. I've done all kinds of things to keep things in perspective and not freak out over it all. Yet if I look backward -- I do see that I'm more knowledgeable than I was before this all started, I'm more compassionate toward others and hope to help others, and I still have it in me to follow my dreams.....

The things I can control I take pride in - such as eating healthy, keeping as active as I can muster, trying to stay hydrated, trying to keep a positive mental attitude. For some these things may seem simple and elementary - but my guess is that they are not as simple as they seem as so many health issues stem from lack of proper diet, exercise, hydration etc.

Anyway - do stay connected with your own network of friends - no matter how small, maybe try a Meetup group function, or if so inclined get involved in a prayer group of some kind if you are able to sit through a meeting. Some sort of healthy diversion of some kind as a gift to yourself --- Your are so deserving of all good things and any respite that comes your way. Anyway a lot of babble just to say I feel for you - and I do know things never stay the same - so keep hopeful as you are - it's for good reason!

This is a very interesting thread... I have a lot of symptoms that are thought to be multi-factorial in their etiology - and I always have this borderline everything.... So hypermobility syndrome is chosen rather than EDS, ANA travels through the years from normal to not normal but always on the edge. Blood sugars present normal most often on fasting yet a high hba1c of 6. Small fiber neuropathy. Chronic s1L5 radiculopathy -- Many places of tendonitis like elbows, hands, shoulders etc. Vasomotor instability with labile b/p. Some leg muscle insufficiency -- it just seems to go on and on ...

As far as Immunology I get that my quant. IGG is high - but not terribly high. So my ref. range for normal is 700 -1600..........My number is 1690. So then in fine print is that this is an apparent polyclonal gammopathy with Kappa and lambda appearing increased. I read you can find this when there is a constant exposure to antigens... Inflammatory things like lupus, Rheumatoid Arthritis, chronic liver disease, sarcoid - immune mediated things perhaps too.

I have trouble understanding why I'm such a wreck in the functional world - yet there is no one answer. Nothing shouts out as 'the cause' alone. Very very frustrating because again before the knee replacements life was without all of this body wide pain and stiffness. It came on out of nowhere.

But if having too much IGG has anything to do with not getting 'sick' in terms of the common cold -- Knock on wood I will get a cold perhaps once every 7 years or so. Anyway till such time I gain an understanding that truly hits home on all fronts in my regard -- I most certainly do pray you each get very well - the best health achievable and very soon....

Hi nowwhat!

I have the hyper POTs. I can't take beta blockers because I have asthma, so I cant give any advice on that. I do tinker with my meds, not everyday, but when I need to I do. Im only using clonidine right now for my POTs. I have to use more in the winter to control my hr and less in the summer. I also take a little more when Im in a very hyper state. I've started exercising more and it has dropped my hr and so I am taking less clonidine now. My cardiologist told me that it was fine to adjust the dose based on what my symptoms were doing. I dont really feel well when my hr drops too low. I guess Ive gotten so used to it being high that what would be considered normal is just too low for me. I also think that just dropping my hr really isnt solving the underlying problem with what is going on, and that is why I feel so bad if my hr drops too low. Good luck on adjusting your meds. I hope you find something that works for you.

Aha! Thanks for sharing so much nmorgen! If I require a bunch of tinkering i guess it will be clonidine for me as well - so for today I learned the doctor wants only the beta blocker at a low dose to see how I do..... About to head into work -- hope I don't get too low while at work - that's always embarrassing as the 'old lady' gets woozy around all the young kids working at the restaurant! I'll bring my zero calorie electrolyte drink with me and hope for the best - and where my tightes knee highs as I didn't get to the store for the compression stockings yet --- thank you !

Under the Research link in the POTS section of the dinet homepage there is an abstract of an article by Dr. Raj et al., that "less is more" when it comes to using beta-blockers for POTS. Apparently low dose beta-blockers can be helpful while a higher dose of the same med can make POTS symptoms worse.

Thank you Sarah4 - and that's what I suggested to the nephrology dept - who canned the diuretic and the diovan in favor of only a small amount of the beta blocker..... Then in about 3 days I'll had just half a diuretic if needed.......... So it seems that you get to know your body and what will work - as this is what I was requesting to do - but it's always prudent to get the doc's blessing. I'm starting to feel a bit better - good thing as I try to tackle a busy Friday night on my feet at work.....which makes my bp low anyway - so by only taking the small dose beta blocker - hopefully I don't crash again tonight!

You are doing amazing -- keep up the good work -- as long as you have an iron in the fire to stand up for what you deserve - you are doing what hero's do..... I just read the back of an audio book tonight when I went to return a movie -- it was called Nothing's Impossible by Christopher Reeves... Just reading that little bit of tiny writing brought home to me again that the 'great's' of this world are the little ones, the ones who come from behind or rough roads to establish in the here and now what it means to win. Not money, not fame, not any of that - but believing in yourself and your strengths, not comparing yourself with others but being grateful for what you have, not giving into the 'I can't's' that seem to be so much a part of suffering...but pushing on and through to I CAN.....and just watch me. You CAN bless yourself for all the good that's within you....you can be kind to yourself and push aside all negativity....you can set goals for yourself and attain them with perseverance.... Stay focused and determined to the best of your ability on the goodness that surrounds you -- it's there. Nothing good is ever easy - but I would want to congratulate you - not berate you - for having these trials and pushing forward - always forward - to a brighter future. Hang in there - my friend I was telling you about had a creepy lawyer that did nothing positive for her case either. But now that the divorce is over and her ex still bullies - she dumped the first lawyer and found an amazing one instead that's willing to take on her case as regards her and efforts toward living a quiet safe life in spite of her ex!

Hi ~

I was told that my blood pressure and medication to treat it would be very tricky to treat - and indeed it is. And has been. And I hope won't be forever. So while I don't have POTS - I have symptoms and issues that are requiring some of the same treatments you would use for POTS. The compression hose, staying hydrated with electrolyte drinks.... My blood pressure is labile on it's own ~ and I guess I have some measure of orthostatic intolerance in that it tanks when I stand too long. Is too high most of the time - and I have three meds to work with thus far.

I will get flushed, tachy and sweaty with upright standing and posture at times too. I have Diovan - Dyazide - and Bystolic. The first is an angiotensin receptor blocker, the next a diuretic, and the third is a beta blocker. While I know you are not physicians - I am still looking for anecdotal evidence from your experience about how you have titrated meds for 'too low' (when it fluctuates with a too high baseline) & what was the most successful for you...

For example - I am exhibiting a rather hyperadrenergic pattern in my vitals as a rule....the adrenalin surge with standing upon testing was evident...

So with the venous pooling - and all - and the need to stay hydrated --- it seems perhaps the diuretic should be the first to go if I have a low couple of days.....

Yet -- it is only when I am on the Bystolic that my lows get super low and that's on only 2.5mg.

And then there's the Diovan - that is not enough on its own.

I am only on the end of day number four of restarting the Bystolic after 3 weeks off of it. And my b/p is heading low tonight. I did work on my feet today for four hours and went for a 40 minute walk. I guess I am a bit symptomatic with 96/61 and HR of 60. It's bed time and it will just get lower yet.

So tomorrow I wonder (since I was told I would need to tinker with my meds).... maybe I should try life without the Diovan -- It doesn't work all that well and since the beta blocker works too well - maybe the combination is too much. I'm thinking I might do just that (after I make sure that it's safe to just stop it suddenly) Or if not stopping it altogether maybe I'll half it tomorrow.

Then the beta blocker and the dyazide can work together as long as I stay hydrated. I will get a phone call into the doctor tomorrow and likely see my local primary care doc as well - so don't think I'm doing this alone & worry.

But still I wonder - does anyone here do the titrating to blood pressure needs? Do hyperadrenergic people seem to respond more readily to beta blockers than other people? Does anyone else have this issue aside from me that does this necessary daily tinkering?

Thanks in advance everyone...

Not sure if I can help - but I have had a work-up with Genetics at a major university medical center earlier this year. I was sent to confirm or not - a diagnosis of Hypermobility Syndrome which was diagnosed by my rheumatologist for sudden onset of body wide pains after some major surgeries. I do know that they are very much wanting an entire family history as detailed as possible about cousins, aunts and uncles, sibs, parents, grandparents etc....and their states of health, what their ailments were, how they lived and died (sick or healthy etc.) So it's good to do your homework and share with the genetic counselor all that you know about things that may be similar to what you experience.

For the appt. itself it involved in my case a very thorough physical exam. They may measure your ears, your eyes, your face, your neck, your hands etc....additionally they may ask you to extend and flex different joints different ways if they are zoning in on a hypermobility component of a malady. They will probably review and recent tests you've had be it CT Scans, MRI's, X-rays, bone scans, and also will look at all the labs you've had done recently - I compiled a binder for the doctors to review. It also had all my consult notes in it and such - physical therapy records - simply everything.

They ask a lot of questions too - like do you bruise easy, have you ever been able to do the splits easily, have you ever dislocated a joint, have you ever been able to contort your body into weird positions or do odd party tricks with your joints. They will ask about spontaneous ruptures of any tendons etc, any frequent injuries, any tendonitis, bursitis, arthritis.... They may ask if you can touch your thumb to your inner wrist, bend your pinky back 90 degrees, touch your hands palms to the floor, and check your elbows and knees for hyperextension. All those things measured give you a score of the Beighton Criteria or the revised Brighton Criteria - for hypermobilty syndrome or EDS - HM (type 3 or the hypermobilie type). They may ask about scars and skin - do you have soft velvety skin, or do your scars look odd and papery, does your skin stretch more than usual. They will ask about your cardiac history as well.

Those questions are again pretty specific to the work-up for EDS - I would imagine every work-up is different depending on what they are looking for. They may want a skin biopsy too - but for me it was cost prohibitory to do that. All and all though as there is no specific blood test for the pure hypermobile EDS - the diagnosis was based on history, family history and physical examination by the doctors.

Dunno if that helps - but there you go :-)

Hi Chuck --

You've been through tuff times before and you'll make it through this as well - nothing ever stays the same. Stress is and has been coming at you kinda hard and furious it sounds -- but again things will likely equilibrate just around the corner ... allow everyone to know it's their love and support that's kept you on track and that you motivate all of your actions from a stance of love as well...you have everyone's best interest at heart - hard for them to know at times perhaps ... because now and again things get ridiculously hard. But you are a good, good person who's been through a heck of a lot.... Perhaps one day you'll even manage to write about all of this - a book or some lectures to help others...

I personally live that 'lose everything I touch' just like my brain is incapable of storing information. Thus far the docs and clinicians have sorta blown it off stating I've been feeling so lousy it's to be expected. I suspect there is more to it. I had a sleep study done and sure enough I have apnea and desat into the low 70's. And that's after a 35 pound weight loss - so who knows how close I've been to death and how many times - my poor brain! But I've been told to give the Cpap a try and that if that was the cause - things should start to turn around with the irritability and frustration and short term memory issues. If however they don't turn around - I guess they do some sort of neuro-psych testing to see if there are documented issues with memory and then treat accordingly....

So please hang in there - reassure yourself and those you love that things will be looking up soon - they already have in the granting of your disability .... Be sure to count your blessings daily because we all have them for sure - Doing so puts you in a gratitude frame of mind and less of the anxiety and gloom and doom or fear.

So perhaps you can also work with your doc to identify any labs that might need checking, maybe a sleep study - just to be sure there is no easy and identifiable cause behind this that you can get to work on asap.... We all want you to feel well....so make yourself a plan for your family to really talk about things in a non-threatening supportive way - talk about how you are each doing with things...not surface stuff but the real heart to heart stuff - it's not usually easy at first - but in the end everyone will likely feel a lot better about simply everything!

Gastroparesis is well documented within our population. I have it too. FOr me, it's not a surprise at all because I have a collagen defect.

Hi Mighty Mouse...I had a question on your collagen defect? In reading a ton about hypermobility syndrome (aka known as EDS-HM or hypermobile type in some circles) I learned a bunch. So I had the dx confirmed by a geneticist. Yet at this institution they say the two entities are different - not the same - I provided them with recent research and articles showing different but they declined to comment (UCSF). Anyway because of cost factors I did not have the skin biopsy done -- that was recommended as I had a cousin die as a youth with Osteogenesis Imperfecta. My sister is hypermobile - and you can find traces of evidence of things akin to this in the family tree for sure. It was the genetic counselor at the lab in Washington that told me to save my money!

So as I go through things mine was to me sudden onset of body wide pains after a surgery. Then in digging deeper I have a beighton score of 4 (or 6 depending on who's measuring my elbow laxity)... I have the highest score on the revised brighton criteria if I remember correctly - so it seems it should be cut and dry). So that means I get a ton of "itis's' - Like bursitis, tendonitis, arthritis - severe enough to have 4 joint replacements. I have the other constitutional symptoms of varicose veins, hiatal hernia, small inguinal hernia and small umbilical hernia, GERD, extensive diverticulosis, myalgias and joint pains, IBS as a young adult, and I forget all the rest aside from hypermobility currently primarily in hands and wrists as the other joints aren't there to assess anymore - even at an advanced age.

So a recent test a year ago also said my esophagus spasms and doesn't know what to do with food - and my stomach in spite of years of proton pump inhibitors is red.

So is this a collagen defect like you are describing? Can I ask how your's manifests itself? I mean I still feel there is speculation as to the validity of my diagnosis of Hypermobility Syndrome - or there is currently widespread lack of a solid knowledge base among clinicians that's in sync. Some people are hypermobile there whole lives with no issue. When pain and constitutional symptoms present - then I guess it's a syndrome. The key question is why or what suddenly brings on the 'syndrome' -- for me it's speculated that the trauma from something (me surgeries - others pregnancy and such major things) can change your pain threshold and bring it on....Dunno

So can you share what you know about this? Thanks!

Thanks for the tip on the compression stockings...I'm afraid they will be hard to put on ~ but I guess I have too! I didn't get a recommendation for the amount of compression or a prescription - so I guess it will be trial and error?

For POTS patients they recommend at least 30-40. To put them on, I've found that using rubber/latex gloves (like what you wash dishes with) helps tremedously. You can slide them up your leg and you won't rip them or stick your finger throught them that way. Makes life much easier and your hose last much longer.

http://www.mayoclinicproceedings.com/content/82/3/308.full

I stumbled across an article on POTS from Mayo - that in turn ended with a great list of referencing studies and then followed a bunch of articles on the same or like-topic...

Maybe you already know of the Mayo Clinic Proceedings page - but I just stumbled upon it for what it's worth!

nowwhat! :-)

You do want at least thigh hi's. I started out with knee hi's and that was a mistake.

So, on your TTT you didn't have the pulse rate hike? Nor, did you have it drop, as in orthostatic intolerance? So that's why they are saying you don't have POTS or dysautonomia? If your cat test were hi that definitly shows an adrenal surge. How did your endo test go. Did they check out your adrenals for Cushings? Couldn't some type of adrenal dysfunction cause the hi BP?

The EDS can cause the blood pooling too. Does the small fiber neuropathy fall into the caused by EDS picture?

(I guess I still have alot of questions on your behalf.)

Keep us posted as to how you're doing.

Hi...

No pulse rise on the ttt - no blood pressure changes that were remarkable on the 10 min. study. I really didn't ask for a diagnosis and never pressed for a do I have dysautonomia ... because my case has so many confounding issues with the four joint replacement surgeries etc. But as to a frank or obvious signaling of dysautonomia from the TTT no - no diagnosis of that during this window of testing. However my symptoms that I experience that I shared -- has me feel faint-like at work while on my feet too long.......this was proposed to be due to blood pooling that can happen with SFN. I had a CT scan of the abdomen with contrast focused on the kidneys because of the hypertension and it showed normal...as did the cats and mets in the 24 hour urine - so no problems with adrenal function found. My Hypermobility Syndrome was diagnosed at a late age and very recently...I guess many people experience symptoms their whole life long with it - but me it kind of came on 'suddenly' - but in retrospect I see it as impacting almost every body system as collagen is everywhere.... So a major medical center diagnosed it back in CA - but there is still heated debate as to whether it's truly one and the same as EDS or a variant of EDS or it's own thing. Dr. Brad Tinkle just wrote a second book on the heals of his first book (from Cincinnati Childrens) and I like his approach in saying there is no distinguishable differences present - he truly has helped move things along for patients with his education through the books.... So I really didn't get into that too much because I guess it is thought I would have exacerbated with pooling long before....who knows I may have - If they want to suggest the SFN cause alone that's okay with me.... I think it could be both and maybe down the road I can discuss that more with Dr. Goodman - this visit though it seemed like a mute point. So I guess to answer your question no the SFN was never suggested to be caused or having to do with EDS...(or hypermobility syndrome).....

Congrats on getting some answers from Mayo. Always nice to have some sense of the craziness that is making your body behave as it does.

I too had a SFN diagnosis, but had all my autonomic tests come back ok. Guess that's why they're calling it idiopathic autonomic neuropathy. When I asked the neuro at CC if his tests would tell if I had dysautonomia, his response was "we know you have dysautonomia just from the fact that your BP dropped on the TTT. Now what we're looking for is the cause of it." But, since his tests didn't show a cause, I still don't know that part of the picture.

From what I've read and learned over the years, I think you would want thigh high or waist high compression. If you stop with knee highs, it just pushes fluid up around your knees but doesn't get it where you want it to go.

What were your numbers on the catecholamine tests- if you don't mind sharing?

Hi....

Lying down supine Norepi was 208 Standing 646

Lying down epi 13 Standing 33

Dopamine < 10 each way.

Thanks for the tip on the compression stockings...I'm afraid they will be hard to put on ~ but I guess I have too! I didn't get a recommendation for the amount of compression or a prescription - so I guess it will be trial and error?

Is sounds like they really did a good workup. Can you tell me what test they ran that showed the vasomotor problem in the legs? I suspect I may have a bit of this as compression stocking are the only thing that helps me. To answer you question, waist high are the best and make the most difference but they can be uncomfortable. I sometimes wear tigh high ones if I am not going to be on my feet too much.

Did you see Dr. Goodman at Mayo? If so do you mind sharing a little about your experience? Do you feel like he really listened to you? Would you recommend him? I am looking for a Dr. to help treat me and not sure the best place to go. Thanks and I am glad you have gotten some answers.

Hi...

Yes it was Dr. Goodman in Scottsdale whom I saw. I have a long convoluted story spanning most directly the past two years.... So while it's always frightening to me to begin in on 'the tale of whoa' with a new doctor - for some reason I just had confidence (bolstered by recommendations here for him) to tell it straightforward and keep talking till it was over and done with. He listened to all of it and took brief notes. I then saw him THINKING ... (I rarely see a physician think these days!) There was a lot of things to tease out and he let me know that up front. That because of all the little pieces it would take time to bring it all together. I told him I had planned to stay a week or week and a half - but would actually prefer to see things through all on one visit - rather than traveling back for part two.

It took awhile for me to understand the Mayo system - but if you have a dysautonomia type question - imho he'd be the one to see at Mayo because he would be the 'lead doctor' who would process your history and symptoms and then delegate to others the tests he wanted and all the referrals to other physicians if you should need their input for him to formulate his impression at the end of your stay. He is the most intelligent physician I have ever met and I've been a nurse for 25 years. He is well educated too. He never appeared rushed, never left before all your questions were answered. He wants you to feel better. He wants you to have answers - even though sometimes there are none for certain. I would see different doctors (all of mine were impressive - I was so blessed) ea. day and had different tests each day. I would wait 'stand-by' and they would work me in the schedule ahead of the 'locals' because of being an out of town patient.

I found myself listening a great deal to Dr. Goodman because he is so intelligent. He already spoke the things outloud I would usually have to teach my other doctors. So I rarely had to interject anything. He has an amazing combination of professionalism that overlies a very kind caring nature... So while your business time with him is serious & you don't want to steal time from other patients perhaps worse off - you don't feel hurried and when he does relax and smile it is just so genuine. So yes I recommend him, definitely.

I guess everyone that's struggled with any of life's bitter moments will cry out for relief, help, strength, a change of luck etc.... no one escapes without struggle and strife - that's for sure. The only one that can change anything about anything is you and your responses to what's going on around you (well that and prayer if you believe in the power of prayer). So if you believe you truly deserve the best life possible in your set of circumstances and you are willing to fight for what you deserve - then it's time to make a plan. Set goals and make a road map of how you will achieve those goals. It's often the myriad of little tiny things in life that add up to health or sickness for that matter. If you choose to treat your body well and keep it well hydrated and well nourished with only healthy foods most of the time - that's huge! If you do it already - congratulate yourself and keep up the good work. If your diet and hydration could be better than set small achievable goals and build on those successes. If you desire to be well - then perhaps take a shot at a small craft that you enjoy or join a little book club or bake for charity - whatever your tolerance is ... make a goal and do it. It does not ever help to compare yourself to others because there will always be someone healthier, wiser, richer, more beautiful.... Being humble is being thankful and grateful for all that you have ... all the good in your life comes by way of gift if you choose to believe that.... Gratitude is a very healthy mindset & requires practice at first...there is a great Gratitude.org website with quotes and videos etc. It bills itself as a network for grateful living I think. Exercise is vital to human living ~ so if walking around your house is allowable by your doctor then I would do that. I would also if allowable expand that to one of those videos designed to work out for those who can only sit....you can exercise with almost any malady -- it just needs to be tailored to what your doctor says is okay. Repeated regular performance of prescribed exercise helps the body in many different capacities. I personally don't doubt that people come from horrific illnesses, homelessness, abuse, estrangement, violence and rise to fruitful lives that in turn help others...in fact there are a ton of people that do just that ... Whether it be escaping a wicked cult....or a chinese orphan alone and homeless -- there are books a plenty about victory. A quick read is a book by a friend called Double Luck...by Lu Chi Fa -- It's won a bunch of awards I believe - if you love stories that are true about struggle and strife and pain that end in victory - this is just such a book. There are countless others as well......Anyway it can be healing to just blurt out your pain here on the forum ... I've done it for sure ... so good for you in sharing your heart - hoping for better days ahead for you very soon.

While I do not officially have POTS - I do have much of the symptomatology and have been prescribed some of the same things - such as compression stockings, major hydration, and for my hypertension - I'm on Diovan, Dyazide and most recently a beta blocker.

My history with beta blockers (for a baseline heart rate of 100 a month or so ago & frequent palpitations & high b/p)was to be started on 25mg of metoprolol and then as it did nothing for my blood pressure which was sky high - it was upped to 50mg. This again did nothing for anything and had me feel mildly tired all the time. In my frustration I went to the doctor who ordered it and said - it's not helping - I need more or different medication so I won't stroke! He said no as I do get lows with my blood pressure & he didn't want me fainting. He also ordered a stress echo - and you have to be off the beta blocker for three days prior to the test so I stoped the metoprolol. That stopping it gave me the worst headache of my life and sent me to the ER with a b/p of 177/122! No one could understand why that would happen as I was only on a low dose for a very short amount of time - I think even so it was rebound hypertension from the med. I then went to my PCP who ordered Bystolic 5mg. <-- a newer beta blocker.

Bystolic at 5mg --- well one pill....just one single dose knocked my b/p low for an entire week! I went from 140's to 150's over 100 to 110 down to 80's over high 40's! Okay so I took NO Beta Blocker for that whole week. By weeks end I was back up to my high normal. So I then cut the Bystolic in half to 2.5 mg....and by one weeks time I was again in the 80/50's so I quit it a second time. Meanwhile I go to the Mayo Clinic and they in the end want me back on it (or just try anyway) - with the dyazide and 1/2 the Diovan I usually take.

So we'll see how I do - I do know that ever since that one pill of Bystolic 5mg my heart rate has been in the 80's not the hundreds - it's like it reset my clock so to speak. I have not had tachycardia since! Sounds weird but even with all the med changes - it has never returned to tachycardia since that initial 5 mg dose. It's all so mysterious.

I may not last long on it - my symptom set is a bit different so I'll be messing around with meds for awhile I guess till I get to a proper weight...

That's all - just my experience.... My best guess is that the tiredness I feel with them will dissipate or I'll get used to it -- and I never got a headache or anything at all adverse from stopping the Bystolic - just the metoprolol....

Good luck to you!

Hi again ;-)

I do not have POTS -- per Mayo. But just FYI in case it helps anyone - I have this other phenomenon going on that had me a bit fooled I guess. I guess the small fiber neuropathy just diagnosed can mess with the vasomotor process in the legs... which in turn can lead to venous pooling and this is turn affects the baroreceptors in the neck & so on... If I understand this correctly the reason I get to feeling like I must lie down after standing too long - is because of the pooling thing. The treatment is to wear compression stockings -- so while I did a look at the links provided for two companies .. I'd be happy to learn about them - I have bad varicose veins in one leg - so maybe they will help that a bit too.

Not sure if I'm to get thigh high or knee high -- I'll probably start with knee high. I guess I can be pooling even when I'm sitting too - it can happen in this position too...I didn't know that. The other part is that I have essential hypertension that must now be treated with 3 medications - one of which is a diuretic ... so it's very tricky to get the meds right ... as a consequence I need to not ever get dehydrated or the lows in b/p and the pre-syncope stuff could get worse... I'm to drink G2 and water - a lot (I guess to counteract the diuretic)

The other part of my picture is that of a surge so to speak in catecholamines with standing. So the blood draw while lying in calm environment vs getting up and standing ten minutes - showed a robust rise in norepinephrine and maybe the others somewhat too. This is what may be giving me the lability in blood pressure - where it shoots up with standing - though technically I guess I don't have orthostatic hypertension. This could also be a hyperadrenergic phenomena that is causing my heart rate to go to 140 now and again with virtually only a change from sitting to standing - but this for some reason quit happening lately - so for me it's episodic I guess. This is also called vasomotor instability.

I have a lot of other little things that they figured out - but so far this is the part I wondered about - the pulse change, the blood pressure being out of control - the part that had my clinicians wonder about dysautonomia. So to me it does sound like dysautonomia ... but yet my autonomic nervous system proves to be intact and all with the 3 basic tests....

So it's a tricky and delicate thing to discern I guess...(not so much for a neurologist but for me for sure) Anyway wanted to update you all again just in case this kind of thing is happening to anyone else...maybe they could ask their doctor about such things to see if it will help them.

Thanks again for helping me here in the forum!

Wow - do you want me to hold her still while you slug her? I'll be willing to help you out! Okay not really of course but DANG - she's one of the worst of the worst - granted! I had a clinician in a department that was similar - gosh it's like someone took a chunk of their real brain out and replaced it with --- I'm not sure what. That dismissive crap should be reported to a Dismissive Attitude Board to protect patients & their dignity. I'm serious! I had one the other day -- & it seems to be more evident when you bring new current knowledge into the picture - for some reason it seems their psyche's are hard-wired to defensive mode - then they dismiss to avoid any discomfort perhaps. I had one guy tell me to get counseling for fatigue & another tell me to see a shrink 'just in case the first guy was right about a need for counseling' - None of which addressed my very difficult and challenging symptom set.

So do know IT'S NOT YOU. And you are right in being angry. And it's almost a stinking right of passage when you are treated shabbily as you press forward to find the light at the end of the tunnel. Well at least you got that horrid part over with. Now while I don't really know how to help you at this point - that doesn't change the truth which is you have the right to optimal care and expert treatment....you deserve to function in your most healthy and happy state! I've had two years of the honest docs that just say, 'I don't know' - and while frustrating it sure beat the other ones in the two years (only 2) that decide that their discomfort should become your issue and blame you. Finally in the end - I found an honest and straightforward doctor to work with that seems to have figured things out. That's what's hard - to find a doctor who is willing to take on your case and hammer out all the details while being on your side - not against you.

I think the famed institutions like Cleveland Clinic and Mayo have good reputations because the system is set up to facilitate just that -- though I only recently have experience with Mayo. It is however such a life affirming thing to have this happen - I now want to uproot and move in close proximity of the places or cities that have such services. Certainly such attitudes do and will happen at all institutions regardless of reputation because people are people....

Anyway rant over - I do feel for you....but this will pass and with perseverance you will most likely uncover what's going on and get appropriate treatment... It just stinks when you have doc visits like this for sure!

Thanks, Issie. That's sound, logical reasoning to me. I know that no matter how hard we try, perfect health is unattainable at present. I look forward to seeing what perfect health feels like in the paradise soon to come. And Lieze, I do believe that a lot of our problems are caused by our environment and some of the poor choices we have made as humans (both as a whole and as individuals). I think there is a correlation between immunity and our issues. Even though, looking back over my life, I seemed to have little hints/symptoms since I was a kid, it wasn't until a virus last winter that my symptoms got really bad. I also really believe in the "rain barrel" effect. Once the barrel is full it overflows. Between ignored food and environmental allergies, years of lack of sleep, increased external and internal stress, a rotten environment...your body can only handle so much. But yes, there is hope, and that's what keeps us going!

Can you handle yet another person's story lol? Anyway welcome and yes these folks here are an amazing wealth of compassion, intelligence, and real lived out life experience that they share for the benefit of others ... I 'heart' dinet forum!

I'm seeing that the 'gray zone' in all of the dysautonomic stuff is pretty consistent here.... Not perhaps so much in the cut and dried diagnosis criteria and it's application to people suffering - but in the lived out experience of each individual. Symptoms can wax and wane - come on full force ... or fade for a bit. Your 'window' of testing time can only be loaded with so much hope LOL....your body will do what it does regardless of what it did yesterday or what it may do tomorrow. So on we go seeking answers, applying knowledge, learning from others etc.

My coming here to Dinet was for increased sweating, tachy heart rate to 140 with no explanation in standing up, blood pressures varying widely, inability to carry on a normal day without rest in the day - completely turning my world upside down kind of thing. Leg weakness, body pains, crud a bunch of stuff.

It is now thought I have a very complicated set of symptoms that all interplay with each other...(well that part I knew haha!) - but the autonomic doctor (Dr. B.P. Goodman, Mayo) amazingly teased out just about each and every factor in a two week work up. Here my body 'behaved' in the short triplet of autonomic testing....out of the blue -- after a round of beta blocker trials by my home primary doc - the heart rate 'cured'? itself. Even without being on them for a week before the testing. Yet because of four joint replacements, hypermobility syndrome, post op neuro issues he identified, and a newly found small fiber neuropathy.....everything started to make sense. Impaired glucose issues, hypertension, sfn - and sleep apnea now...explained yet more. The laying and standing catecholamine test I flunked....yet how that impacts things -- it's pretty messy. Perhaps a messed up fight or flight system with increased hyper adrenergic state...

In the end my treatment is probably a lot like someone who got a POTS diagnosis (or a variant thereof)....I am to exercise forever till I die (only because I can while my joints last - I do understand many POTS patients are severely limited in this ability), I am to attain a normal weight, I am to wear compression stockings while on my feet, I am to stay super-hydrated with G2 or water. With having been a nurse I'm trusted to titrate my new ordered b/p med regimen as works - but will call the doc if it's getting yet more widely labile - (which happens due to venous pooling d/t sfn) - my b/p is purported to possibly get even trickier to manage with the weight loss. My muscular deficits are likely permanent damage from joint replacement surgeries. My baseline of hypertension - confounds things because the normal meds given to raise the b/p cannot of course be given - it's so crazy complicated to me -- but I'm new to all this. And wearing CPAP -- which will be the hugest motivator in the world to attain a normal weight in hopes of curing my mild apnea...I'm claustrophobic.

I would have never been able to appreciate the gifts and talents of my autonomic neuro physician or even heard of him for that matter if it weren't for the sharing of the people here. Upon reading the recommendations I made a lot of things happen in order to see him because I knew these superb clinicians that actually have a great interest in humanity with these sorts of maladies are few and far between. Now I can claim my sanity......... Now I can smile for a bit at the cocky neuro seen elsewhere that said to get counseling because 'it's been known to help fatigue' - and smile even broader for the next even cockier neuro who said I had to prove I wasn't psychiatrically challenged because of what the first guy wrote... Good grief.

I'm in utter awe of the goodness that's surrounded me since I met the people here on dinet.... May blessings unfold and manifest for you as well!!!