comfortzone

With OI and EDS and fake hips and knees - I've been told to exercise daily rather than longer periods 3 times a week. My attempts at strength training have 100% backfired everytime I try this on my own. So on my 4th year of symptoms I am only to allow PT to help me with strength training.... So I leisurely did the eliptical --- in fact it's so comfortable and slow that I feel like it could never help me - yet this is exactly what I have to overcome - my need to push the envelope for benefit --- when my body simply needs to be worked gently daily for health. I don't get to a good pace till at least 10 minutes into the session - then the next amount of time I alternate pushing for speed to just moderate - and then eventually cool down - and I'm done. I have alternated between rowing, treadmill, eliptical and the recumbent bike - and I think the eliptical gives the most bang for the buck with the least damage and pain. Rowing bothered my spine issues - the bike is just flat out boring and your arms don't do anything - treadmill feels harsh on the joints - so that's how I favor the eliptical... Anyway I think I FINALLY understand that the doctors and therapists are 100% correct in their assessment of what is best for me --- and even though I have a bad habit of berating myself for such "weakling, wimpy" workouts .... if I stick to this everyday? That is exactly what I need for health and there is nothing wrong with me not measuring up to the rest of the world... at least I am moving... and if I'm doing strength work - there's never a therapist more than a few feet away as I try again to build up a way to do this safely down the road without being 'babysat' during the workout... So for me - slow and easy really truly does it!

I hope that at least one of your docs then is willing to prescribe this for you..... & yes in my experience it is a bear to withdraw from - but with patience and a doctor monitored taper - - from what I understand, it can be done and is safe, although can take a month. Maybe you should talk to your doctor about just half the amount of a .5 so you don't sleep so long ----- it might be a good way to start as eventually over time people end up increasing their dosage to get the same benefit... even up to a milligram three times a day, from what I understand! The dangerous thing about Klonopin is that very thing - stopping it --from what I understand. Because the half-life is so long - you can stop it for a full 10 days before the withdrawl kicks in - so here you think you just lucked out and the tremors, sweating, pounding heartbeats and even siezures can occur ... long after you having stopped it --- again this is my understanding. Bottom line--talk to your doctor about tapering. But I think it most certainly does have it's place in patients care regimens and your quality of life can be much improved through use of it if your doctor agrees.... I am tickled pink you feel better on it!

In a sense it shows how forward thinking Dr. Atkins was in his 'diet revolution' - the first two weeks called "induction" where carbs are limited to near 'none' at all.... The body then shifts its present way of doing things to a whole new way - using fat for fuel.... It kinda makes you go "duh!" Gimme five Dr. Atkins - as you smile on us down here :-) I was on a med in my late 40's that's known to cause diabetes - the doc gave me Metformin to try and make sure I wasn't harmed. In the end I quit the med. But my hbA1c's have forever since hovered from 5.8 to 6.0 Once recently it came back 6.4 and I was terrified.... I have crazy high and labile b/p to boot. Perfect set up for bad things happening. So I did the induction phase of Atkins - after the proverbial "Atkins Flu" where you feel lousy detoxing I guess - I then felt much better - and less anxious too. Then in spite of my EDS issues and joint replacement issues I was told to exercise daily for at least 15min.... It increases pain for sure - but the thought of thick sticky sweet blood going through my kidneys doing damage makes the pain bearable... Maybe the pre diabetes caused my small fiber neuropathy... So how this fits - is a marvel and I'll leave it to you smarties.. EDS, GTT that showed no elevation of glucose levels 2 hours after drinking the 'stuff', borderline diabetic type labs - crazy high b/p that will drop to nothin' in a heartbeat, orthostatic intolerance - the pooling to beat the band only through anectdotal evidence and testing that shows small fiber neuropathy...Flushing like crazy - April 1 will be fully menopausal. But I almost fear carbohydrates now - I'll have the healthy ones in vegetables - and the sweetest I'll do is berries as Doc Atkins said they were good... Rarely delight in a few pieces of toast as a binge... But from now on I'm a low carb 'lifestyle' girl - which consequently means low gluten by accident... One big confession is I wish I'd never met 'sugar-free' chocolate products at my grocery store - from Hershey's to Russel Stover and Whitmans - gummie bears, jordan almonds - it all comes in sugar free - peppermint patties, reese's cups - anyway they satisfy the sugar craving by using sugar alcohols that have nearly no effect on blood glucose levels... So they have little to zero net carbs - And if any of you are on opiods for chronic pain - well a 1/4 pound of sugar free gummi bears is a mighty tasty laxative lol....no more need for Milk of Mag... I'm trying to break this habit of these fake sweets - I wish I'd never tried them as they seem to be a 'trigger' food now... My blood pressure is improving on this diet - meaning the highs are more frequently visited by lows - I try not to mind the lows as I know titrating downward from three anti-hypertensives is going to be tricky ... the first thing I do is ditch the dyazide - and if I'm too high I add it.... I titrate clonidine and propranolol (inderal) -- as needed per my doctors orders... Have you guys read Dr. Diana's pretty ill stuff on her blog and the videos on utube? She's all about this edgy type thing - & figuring things out with us EDS'ers and POTsies... she talks about mast cell things and undetected hydrocephalus as infants - all kinds of things - and rather than 'eye-rolling' she's getting noteworthy! She's an optometrist of all things!

I knew of the enormous Houston med center situation as I had a scare with possible inflammatory breast cancer - I got the 'maybe' diagnosis and immediately got on the phone to an MD because that is their thing (one of many) - they wanted chemo started within 72 hours ... Later turns out the doctor was a greedy sensationalist turning women into 'victims' while he's laughing off to the bank - disgusting. I reported him to peers in the field and they all stood by him. Well finally I accidently came upon a lady who used to work for him - gave her my assessment of the situation and she fully agreed! GRRR.... Next my orthopedic surgeon who did all 4 of my joint replacements was cured of throat cancer there - lived in a hotel nearby and was there for near 2 mos. getting radiation - it worked and he's healthy as can be 4 years later... With all that space and the randomness of the economy it would seem that a chunk of a building could be renovated into a 'lab' - I would also love if there was a full on Ehlers Danlos Clinic near that dysautonomia lab so these kind people in the world of genetics could tap into the multiple resources available at the center - and get people on their way to some better functionality... Parts of buildings and entire buildings are abandoned for projects that didn't turn out --- eventually somebody lays claim to the real estate and something new crops up ... Agreed about time "we" get a voice in some city in the USA

I see... well I suppose tomorrow morning I could do the calf thing - and the abdomen I'm not sure it would show there ... but I wonder about this labile b/p .... and the sharply rising catecholamines with standing & pooling. The doc said I got flushed with sitting up from laying flat - b/p went high -- that can be normal to a point - but the symptom I'd like to be able to fix - would be the extreme variability of my b/p. Then I got to thinking if it's variable from the catecholamines to a certain extent rising with position change - and the body muscles move pooling blood in waves - I really don't see a reason for this to ever equilibrate no matter what meds I take. Inderal and clonidine keeps things to a dull roar I suppose.... but in addition to hourly variations - I get episodes of hi and lo - now it's low - that began after one single "extra dose" of Inderal. It reset my clock to stay barely 100/60 -- when just days ago I asked to take more meds cuz I was 148/107 for no reason midday. So I will enjoy the low b/p while it's here because it's less 'stressy' than running around too high... I'm trying 30 min. on the eliptical today - want to do this everyday to see if that will help things equal out as well... thanks!

The particular book that his story is in was a Chicken Soup for the Catholic Soul - and interestingly he is Jewish :-) There's too many Chicken Soup books to count these days - for kids to teens to who knows! Theres even a board game that I picked up at Goodwill that's Chicken Soup for the Soul lol

I had the sleep study at Mayo Clinic and have mild sleep apnea - but desat to the low 70's. I could not tolerate the mask at all - so that was the end of that ... gave it my best shot. Insurance will pay for all the equipment if you wear it as ordered and if you have mild sleep apnea combined with hypertension... I wasn't surprised I couldn't tolerate it as I can't stand glasses, sunglasses, hats of any kind or scarves - don't even wear gloves or coats unless absolutely necessary - used to wear lightweight jacket wide open in 18 below zero winters! So to have all that gear - in order to help me to sleep? It was absolutely ridiculous - but I sure did give it a try - for about 3 months I think...

I thought it was really sweet of you to write here and ask people what they thought and for suggestions - that just shows how wonderful you are!! I don't know how old you are but it sure would be nice if you had someone to talk to on a kind of regular basis as some of the posters here mentioned... someone totally "on your side" someone who works for you to help you live your best life in the present moment. Whether its a counselor at school or a nurse or a psychologist - or a person that works with youth at church - it would be great because they could help you to see what a celebration life is no matter what our circumstances ~ and that you are so so SO precious... irregardless of physical symptoms. Additionally they could be your support - your team leader - your coach in dealing with relationships - family and otherwise. There are skills that can be developed - by anyone in a family to help things go more smoothly that a counselor can teach. Everyone in a family has a 'role' and is important - having everyone come together in a healthy fashion is what these skilled therapists can do. It might be the person meets with you alone at first - and then later invites mom/dad and sibs... but you call the shots there based on how you are coming along with your relationship and trust with the counselor. It would be really nice too if you could get to some kind of physical therapy or prescribed activity if a doctor believes it would be helpful. That way you are under the watchful eye of a medical professional when you are riding a recumbent bike or walking a treadmill etc... But to be encouraged to move your body while also being safe in the hands of a PT might be just the ticket to show everyone that you are doing what the doc wants, you are trying to improve your health - and you will also be supported if your efforts are too taxing and you need to progress ever yet more slowly - sometimes just one minute at a time more activity is enough to move forward - yet not have you do too much. Also depending on your age - and your involvement in the community - either at church or with friends - sometimes it's good to plan time away from your family. Like camping or a retreat. You may not be able to do all the things everyone else is doing - but you will be out of the house and out of the watchful gaze of the family - free to try things and free to just be yourself around other people your age - healthy or not so healthy - everyone needs a break in the routine now and again - its just good for the soul.... So hopefully everyone can start fresh - everyone forgive after the yelling etc.. and come to a decision to not allow things to blow up like that - it's really just not worth the energy - when you could be doing something more fun... even if it's just drawing or making something cute for your sibs out of popsicle sticks - a sense of humour and little gifts from the heart mean a lot .... This too shall pass - nothing stays the same forever - you will feel better --- so hang it there and keep smiling!

I had read about raising one arm up above your head for a minute or so after you've been up and about on your feet for some time... Tonight I was cooking ... for about 45 minutes - that was a lot of on my feet time with no sitting -- then went before the bathroom mirror and raised one arm up above my head for maybe one minute - or maybe not quite that long... Any way I brought it down in front of me and next to the other arm... One arm was white as a ghost - the one above my head for a minute or less - and the other one looked normal which was pink to slightly reddish skin. Is that indicative of anything significant? I get a big rush/flush in the mornings when I move out of bed in my chest and abdomen - I guessed it was pooling - and I also have bad leg veins and pool somewhat there - but that's congenital bad valves... Then next question is what diagnostics are done (if any) to determine if you pool a lot - and then who does these tests - at which facility - and then finally - is there a treatment aside from compression sox and an abdominal binder? Thank you :-)

After reading what you wrote about pneumonia etc... sounds like you might be an ideal candidate for this J-tube! I have much much hope that it will truly be of great benefit ... I'm glad you have docs that are continuing on your behalf to come up with ideas so you feel better -- again many blessings as you forge ahead toward wellness :-)

Good luck with that! Beautiful places like Central Coast California have trouble recruiting doctors as well! If you have a stellar doc with a great education ~ they are often wooed to places that are quite nice or with fantastic reputations. Even those stellar clinics and institutions have threatened closing things that don't make a lot of money like the ANS testing... Multiple disciplines have a hand in this field ... neurology is who aids me in my life - others have cardiology and there are still more... There are sophisticated companies that recruit physicians - and there never seems to be enough... Then comes the issue of reimbursement.... beautiful locations like California central coast aren't going to get near the money the big cities of SFO or LA provide to docs... Add to that the insurance issues like Medicare reimbursement (cuts) - even if there is a good doc - the disabled that use Medicare cannot use their services because the doc refuses to accept it at all - or accept assignment for payment at Medicare's rates if they are one of the few still accepting it. I am not sure how much fruit there would be in writing letters to entice a doctor to Houston - there's all kinds of things that have to happen - entire 'packages' with benefits, there's credentialing and more - usually done by pro's in HR. Sometimes a good way to get information about who is in your neck of the woods is to attend one of the symposiums or seminars as a guest ... Often there can be breakout sessions ... these are great opportunities and usually a lot of work goes into trying to snag doctors from around the country to leave their busy practices to give a talk - so the ones that do show up suddenly are all in one place - you can ask questions afterward and express your ideas or concerns at that time.... Additionally you can encourage one of your own doctors to attend one of these conferences to learn - and maybe one day they will decide to treat this patient population - once they know they have support from this 'culture' of disorder - dysautonomia & their experts... For me it made sense to relocate to a large tertiary care center that had not only dysautonomia treatment capabilities but every other discipline as well... This probably doesn't make sense for a lot of people though... and just as mentioned I know the Mayo lab could close in a heartbeat as well - and their doctors transfer between facilities too - so who's here today may not be here tomorrow. I hope your letter writing will bear some fruit - change has to begin somewhere -- it sure does seem like a shot in the dark at this point though - so many variables - the most important being that the doctor has to be happy.... He went through all the school all the stress - and likely now has a family to care for... then a true keen interest beyond just neurology or cardiology in dysautonomia and POTs that is peer supported... then has to buy a home and relocate -- all in this economy... but you won't know unless you try as they say!

Did you know that Dr. Blair Grubb also is a writer? I was reading one of those Chicken Soup for the Soul books and a really neat story in the book was written by him! Not about POTs but about an experience that highlights faith in a very cool set of circumstances that befuddled him early in his career as a resident I believe....

Varicose veins most often are a congenital defect in the valves of your veins... Other things can contribute to them or 'cause' them such as pregnancy or careers where you are standing a long part of the day and simply being obese - these things increase pressure in the abdomen - which increases pressure in the leg veins... So the blood gets returned to your heart well enough - but then slides right back down again - the valves are incompetent as they say - and then that creates a lot of pressure in your legs/ankles... After not treating them for years - the color of you skin can change, you can get thick twisted ropes of veins that raise well above the skin's surface... Your skin gets 'itchy' - these are precursers to ulceration of your skin. The skin ulcers are a bear with a lot of pain. Your ankles can be filled with spider veins and a dusky bluish color. Thrombophlebitis is when there is inflammation of a vein that is caused by a blood clot - that's why people are recommended to stretch out when on long plane rides, where loose waistbands if possible - exercise the legs to keep the blood from pooling in the veins which is venous stasis ... this is why you are made to wear anti-embolism stockings right after surgeries that have you in bed afterward... and also why you need to walk right after even major surgeries if the doctor orders you to do so... Need to keep that blood returning up to the heart .... If you stayed in bed - you could be setting yourself up for a clot to form in the vein... on a plane with tight sox and a tight waistband - these things could behave as a tourniquet of sorts - increasing the pressure in the leg vein and the pooling - setting yourself up for a possible clot. Blood thinners are used with thrombophlebitis to help reduce the chance of any new clots forming. Conservative treatment would be to attain a normal weight and wear compression hose (as long as they don't make matters worse with the 'band' sometimes tourniqueting your leg) - well fitting hose are the first line of defense against worsening veins... Testing for the health of the veins is done by ultrasound. Very quick and simple - you can see blood and how it travels - a cross section of vein - and whether it pools and stays where it shouldn't or if the blood travels normally in healthy veins back to the heart. One procedure nowadays used to treat severe cases is endovascular ablation - or laser surgery... A thin catheter is inserted into the vein and laser applied as the catheter is withdrawn - destroying the vessel - often the saphenous vein. The doctor can also remove some veins if needed and treat others - all in one procedure. Risks would be probably clotting or bleeding out - so there is some risk - but most patients I'm told do fine. It is required you wear thigh-high compression hose afterward - on most all days of the year. Anti-inflammatories are prescribed post procedure to help in the healing. Some patients report they feel wonderful after things have healed - like they have a lot of bounce and energy in their fixed leg. Swollen veins can have you feel it's hard to even move the legs at all.. people then cannot wait until the time to get the second leg done to have that good feeling in both! It is an expensive procedure at about 4K per leg. Medicare will not usually pay unless conservative treatment has failed and you have had serious consequences such as bleeding from the veins and needing transfusion etc... Many people seek treatment less for the pain and discomfort of the veins in advanced stages as to have their legs look better - and of course most insurances will not pay for a cosmetic procedure. There are other therapies to treat them as well such as sclerotherapy where a solution is injected into the vein causing it to die --- it has risks of skin sloughing and other unpleasantness - but again many people with less troubling cases have used it for cosmetic reasons and it works - however some end up with dark brownish outlines on their legs (from the iron) where the vein used to be. It's just genetic for many people - and with Ehlers Danlos - many have a disposition toward weak or faulty collagen so I'd think there might be more risk of having the perhaps? Lastly there is some discussion of patients with OI - benefitting from the procedure -- not sure how solid that is - but a doctor I know told me this - that a patient had blood pressure issues that cleared post procedure... to me it sounds kind of sketchy so gave it the big "whatever" ...

Curious if you are medication-free -- or if you had instructions to 'take' or 'not take' any of them prior to the beginning of the tests? Thanks!

Thanks Chaos! I did that very thing - "together we stand" and with the word Pots and I kept coming up dry - with as bright a group as we have here I was sure someone in Dinet must have either written it or had read it... That being said - we always have new members joining the ranks - and I figured I'd give a shout out about it... nothing like the power of a good book to support you in the fray! Does anyone remember if it's kind of "solely" for the POTs people - or if it would also help other odd blood pressure / orthostatic issues of intolerance? I'm guessing it would help anyone - yet if it's specifically for people with heart rates over 130 (unmedicated) - from slight movements - well that's not me & I might get frustrated with that... Thanks - I'll also try a few other phrases to snag that old thread - thanx C!

http://www.amazon.com/POTS-Together-Stand-Riding-Dysautonomia/dp/1466371501/ref=pd_sim_b_4 Have you guys read this book? Was curious who did and what you thought of it - it is fairly well reviewed at Amazon... Thanks!

http://www.amazon.com/Hypermobility-Handbook--Management-Ehlers-Danlos-Syndrome/dp/098257715X/ref=sr_1_1?ie=UTF8&qid=1329635992&sr=8-1 Many of us see either Dr. Brad Tinkle or Dr. Clair Francomano or both -but if you don't wish to travel - (he's in Ohio - she in Maryland) - Dr. T wrote two books on EDS Hypermobile Type --- there's a link above to Amazon for it - another book that came out a year or so earlier is http://www.amazon.com/Issues-Management-Joint-Hypermobility-Ehlers-Danlos/dp/0981836011/ref=sr_1_1?s=books&ie=UTF8&qid=1329636161&sr=1-1 Either one is a good primer for EDS and Joint Hypermobility A third book that get's into the science of the chronic pain and dysautonomia things etc... is by Prof. Grahame and others http://www.amazon.com/Hypermobility-Fibromyalgia-Chronic-Pain-1e/dp/0702030058/ref=sr_1_1?s=books&ie=UTF8&qid=1329636251&sr=1-1

Another medication that Mayo uses is Guanfacine to help labile blood pressures, orthostatic intolerance type 'stuff' Also called Tenex for kids with attention disorders... it drops their pressures as a side effect... It's for hypertension as well - and has psychiatric uses like for generalized anxiety disorder, some tics, PTSD etc... For me it was a terrible weight-gainer so I had to stop it. I am doing really well on Propranolol....and Clonidine - but I do not have POTs really - OI and pooling - Dysautonomia like 'issues' but not POTs thus far. Definitely chronically fatigued - definitely chronic pain -- but I'm a hypermobile person with EDS too. SFN, borderline diabetic. I didn't do the poll cuz I don't have POTS

Yes they are doing the name change things - there's an upcoming International Symposium in Belgium this year - http://www.eds2012.be/committees.html Hans-Peter Bachinger Richard Wenstrup Peter Byers David Birk Anne-Marie Malfait Melanie Pepin Sharon Terry Bradley Tinkle The above are the USA people committed to presenting thus far - but you can still submit abstracts etc...

You have my prayers as well... I guess I only have questions - but no answers... I would want to know what the best possible outcome would be for you if you do this. Is the aim of it to be a temporary fix to allow the stomach and esophagus time to 'rest' and thus heal? Is this something that will be permanent or temporary? I thought that for the most part all tubes were pretty much temporary in nature - allowing extra nutrition and medications etc... for specific purposes/disorders... Did they say how long or what would need to occur in order for them to remove it once and for all? If your pain and bloating come from food when it's ingested --- what causes that pain and bloating - is it the actual types of food itself in the stomach such as carbs vs fats vs proteins? Or is it the mechanical issues - such as high fiber requiring more work for the stomach or is it the food size going down - like thin soups are fine - but forget steak and chicken? Had they ever tried you on an NG tube with enteral feedings to see how you tolerate the feedings into the stomach? Then the sore throat - do they say why you have it? If you had the Nissan done - does acid 'still' reflux up and injure your esophagus and throat? If you were to eat nothing in a day - does that allow your throat time to rest/heal? I would also want to know why muscles are being damaged in your throat? Is that a disease process of another type - or is it GI related somehow? What mechanism of injury makes the muscle tissue not be able to function? Then finally in a best case and worst case scenario what would the J-tube accomplish for you... I think number one is that it would provide good nutrition - and when the body is fed it is able to get stronger... Is your intestinal tract pretty healthy? Meaning normal going to the bathroom? The J-tube at the skin will need to be kept clean and dry - a simple guaze dressing most likely... The enteral feeding solution will likely be placed on a pump - so accurate dosage and rate can be obtained. So you'll have a bit of equipment - it's pretty easy to do though...and it will assure the very slow rate of administration which is required for a J-tube as the intestine cannot store food - needs to drip in slow. A button is sometimes placed at the skin - it's really just something for you to plug the tubing into so you don't have to worry about a tube getting in the way of your lifestyle activities... I don't expect any answers to the questions - but if I were you I'd want to know absolutely all that I could with exacting clarity as to what is to happen, how, why, for how long, how does it get finished etc... But all personalities are different - some people just say, "let's do this"... I ask questions a lot because I notice doctors do like to do procedures and things like procedures when we patients are hurting and not doing well -- but sometimes they neglect to tell you about the 'end' of things - like how to discontinue a medication - or in your case - is this forever? Will l eat with it in place too? How long will I have it? How will I start to eat again afterward? Those kinds of things... Blessings to you and much healing!

Sorry about your having to deal with this 'newish' symptom set... I know 20 years ago I had literally 'out of the blue' fulll on panic attacks - had no idea what was going on - they turned into fulminating ones where I lost all ability to function - really bizarre. They put me on a medication - actually 2 --- Norpramin and Klonopin for 3 months and I never had another one again! Then I learned I have Hypermobile EDS - and we get anxiety as a patient group often in our list of symptoms... So I guess that weird time came 'honestly' as they say...was so glad when they were gone never to return! But to your point - recently I had a sense that I was about to fall and black out while at Whole Foods - my vision dimmed and I leaned forward - sure that that was my moment of death - it was the hugest DREAD I'd ever felt that accompanied that little 'episode' ... Later that night went to the ER and all was well except very very hypertensive - they pushed IV Labetolol and then I was normal again. I have stiffness every single day -- I wake up with it - my legs are the stiffest and very heavy. My arms and hands in particular are stiff also. I do not know what causes this - but it is one of my biggest discomforts to have to literally use a wheeled walker some mornings for how stiff I get. I use it rarely but did a week ago daily for near a week - only for the first say 10 minutes of the day - then things get a bit better. Dr. Tinkle told me it's like "gelling" which is what people with RA or rheumatoid arthritis get.... I don't have that - so why I "gel" beats me! The docs had been debating whether my neck arthritis and issues were causing these symptoms - one neurosurgeon said it was from my neck abutting my spinal cord causing some compression - but Mayo said absolutely not - so I went with Mayo as I don't want surgery that's for sure. Anyway - some days when I have that stiffness I get this nagging wondering - gosh are my limbs so heavy because of my neck situation? But then recall the numerous tests Mayo did that proved that not to be the case - sigh! So do you have a healthy neck? Are you an EDS'er too? I know hyperventilating can cause muscle contractures - but it didn't sound like you were doing that -- I take propranolol too for hypertension and I've read it can help with situational anxiety - but I don't feel any different or less anxious being on it - is that why you are on it? HTN too? I hope this goes away for you soon!

Thanks to all for their experiences shared here. I know I pool - I have a weird flush/rush in my belly/chest every single morning when my musculature begins to move - same with I'm laying down for say over an hour & I sit up afterward. I have OI - and crazy very labile b/p. Recently I had a weight gain and rather than labile bp it went to full on hypertension. I lost the weight gain of 13 pounds and now I am labile again. My meds now are Inderal (propranolol) and clonidine. Without them I am tachy and hypertensive both. Today the meds knocked my b/p very low and I lost about 3 hours of the day - very symptomatic with 90/60 -- hr of 60. As I eat better and the pounds reduce - I'm back to my old tricks - labile to beat the band. Which limits meds to help me - and with htn I don't get allowed a lot of meds in the realm of 'feel better's' like the ssri's etc.. I gained the weight on guanfacine and had to stop... mestinon didn't help me either.. Bystolic just seemed to quit working. I do take a diuretic too - but based on today's episode of hypotension - I'll stop it. I will have a vein procedure in my legs - some say that OI can actually be helped with this a little bit ~ I'm not holding my breath - it's for preventing stasis or pooling ulcers - incompetent veins - common in EDS'ers - but lots of people inherit these gnarly things. I thought I had orthostatic hypertension - I shoot way up -- with a sit to stand - Dr. G the other day took my b/p after I sat up and diastolic was 107, face flushed etc.. In my case I have rapidly rising cathecholamines with position change - but the overall numbers aren't out of the ball park - more about how quickly they shoot up - which may contribute to the labile b/p. Unmedicated my avg. heart rate is 100 with lots of pvc's and PAT - but the Inderal knocked that out. Clonidine helps the hypertension as well - but if I keep dipping low as I lose weight - I'll have to tinker and taper as they say. The insulin thing is fascinating. I have had fastings as high as 119 --- and HbA1C before I lost the weight recently was 6.4 -- the worst it's ever been. No one has claimed full on diabetes yet though. I do have small fiber neuropathy from likely having a hbA1c of around 6 for 12 years now. When I had the 2 hour GTT - I had a fasting of 99.... drank the stuff - and 2 hours later I was 99 again. Which is just bizarre - wouldn't it have been like 140 plus? So I guess I must have too much insulin - or it did an extra good job that day? I was wondering if you could explain to me what lab test options are available for a curious insulin episode like that -- and also does Dr. G have any ideas on pooling and insulin -- as a hookup as well? Has anyone asked him about this? Is it really a binder and compression hose alone that can effect anything? The way I lost those 13 pounds was to stop carbs as in the induction phase of Atkins... I felt sick at first - but then felt better.... I think I may repeat a couple weeks of low carb to almost no carb again - and try my eliptical for just 15 min to 30 min. or so a day ... To keep the blood pumping somehow... Anything more than that - I get sick with pain and bedbound. For some reason cardio done lightly is okay with my symptoms - but any type of strength training and I'm totally incapcitated with pain. I want to get healthy - and it seems it's always 1 step forward - 2 steps back - so I don't get anywhere - but I'll keep up the low carb - which hopefully will keep insulin in check - which will maybe keep pooling a bit more in check - ? So much to learn!

Thanks! I'll take a look at it now :-) The more I 'pay attention' to this phenomena - I realize that it happens 'every time' in the morning - not just once in a while... today got very fatigued after an hour of light housework - I was so mad! Cuz the day held a lot of promise - usually if I lay down I 'recover' and get going again...But today I layed down and even dozed for a bit - a whole 3 hours.... And again that chest/abdomen 'rush' ... like a small explosion under the skin --- Similar to when you get to the edge of the Grand Canyon and your fear of heights gives you that rush... Very similar but a little bit different...Okay I'll read the posts now

Hi everyone --- Okay so I remember someone saying once they understood exactly this phenomena ... Where in the morning - when you first go to move upon awakening - this "rush" happens from below your neck to maybe just above belly button... It's the oddest darn thing - but happens when you lay down for a long time like a nights sleep --- or if lucky - maybe a long nap. No direction really but just this huge 'feeling' inside - huge rush - no direction to it - just all at once bam... So now I see a doc who says I need my leg veins taken care of pronto... Incompetent veins bulging with skin changes etc... showing I will definitely ulcerate if I don't do something to relieve that pressure from too much blood etc... I asked the vascular guy if anyone has ever been helped with labile blood pressures by having this procedure (I doubted it could help) and he said yes he had one patient who was helped. When I asked the nurse - she said her patients get one leg fixed and then want the second one done immediately because they now have so much energy and bounce in their step in the 'fixed' leg - they want that energy in both legs... So I got to thinking about blood pooling - yes I have hypermobile EDS or some HDCT by geneticist best guess (Dr. T and Dr. F) - and we as a patient group often get this dysautonomia stuff or at least variations on orthostatic intolerance.... Is this a.m. rush all about blood pooling in the abdomen - then being squished by moving musculature back out to the body? I was at Mayo and getting up off an exam table - as I sat up the doc took my b/p - which was like 140/107.... I told him 'don't worry - it's always high when I change positions upward' -- he said, 'yeah your face really flushed too' So again I wondered - am I pooling more than usual in my abdomen and if I am- how do I prove it medically through diagnostics - who does this kind of testing or exam - and if someone does it - who does it - and if you do pool in your abdomen - is there anything to do about it other than the generic abdominal binder? Thanks guys for listening!

Are you currently working? Or did you recently quit work? Or are you working but barely hanging on? I think all of this creates the situation from which you spring forward. If you are pretty much at the doctors constantly for one thing or another -- that can be a helpful thing in hindsite. I'm pretty sure the best scenario is that you are working and have a solid work history that the soc. sec. system can draw from to form your case. They are actually not your enemy but there to help you. Every situation is different.... If you were working and went out of work utilizing your employers disablility program --- and if your state has a disability program that you are using - and you see these things are meeting their 'expiration' time - then it's definitely time to apply - the sooner the better - if you are homebound - you can even apply via a phone call to soc. sec. -- they will provide you with a list of documents and such you need for that phone call - and then you wait for the verdict - your records from doctors are all obtained by soc. sec. and can speak for themselves without an attorney even involved -- a solid case is a solid case...luck and a prayer (or a thousand prayers) some cases are approved straight away.... You can learn a lot just by calling social security and also by reading their website... Remember too that just because you need it now - you are aided all along the way to give work a try again once benefits are procured....not pressured - but if you wanna try to work you can....then if things don't work out you are given several opportunities to try - without hampering your benefit -- Even if you drop the benefits and work full time again - then fall again - within a time frame you don't have to 'reapply' but rather they re-institute your benefit you had dropped. Your monetary benefit amount will be better if you shift from that solid full time job into the disability program - rather then you taking lesser and lesser hours, lesser and lesser income, lesser and lesser jobs.... They look at your income history when figuring your benefit amount.. The benefit aside from a cash flow is that 2 years into it you are able to receive Medicare health insurance...the bad part is some states don't allow supplement insurance if you have Medicare and are under age 65... But some insurance is sure better than none. Once approved you will be put into one of 3 categories I believe - those that are likely to get well in a year or so - someone that will get well in a bit longer time - and those that aren't likely to recover... These categories then dictate the timeframe for your claims 'reviews' ..... so it's prudent to keep up with your health care providers so a paper trail is present of your disability's path of care etc... Hope this information helps - I don't work for Soc. Sec. so it's not 'gospel' - but this is what I learned from them...maybe give them a call.. blessings to you!