comfortzone

Steroids can be such a trip. I've taken prednisone several times for lots of different reasons - usually a burst and then a taper....to help whatever issue is bothering me. They cause a voracious appetite in many folks and I'm one of those. It cause high energy levels where I feel like super woman....but it also causes insomnia and can cause irritability. It can tear up your stomach as you note. ENT's often have good reason to try steroids when there's odd things going on with the ear. I knew one patient that had a sudden onset of hearing loss that never returned on one ear only. She went to urgent cares whose docs all tried antibiotics etc.....well she never had an infection and lost valuable time for treating this 'sudden loss of hearing' syndrome - where the treatment of choice was/is steroids. Usually they are short term and very helpful ... and some docs like ENT's have uses for them that are above what the general public usual knows about. You can take a steady same amount daily if it's not too high and end without a taper - but much of the time you will taper off of them ... So it may be 70, 60, 40, 20, 10, 10, 5, 5 -- things like that......It knocks out your own production -- and you taper off of it so your own system wakes up again and starts making what it needs....thank goodness we have them - sometimes they save people from untold miseries with rashes and itching, allergic reactions, pain and inflammation etc.

I exercise just to keep life interesting lOL.... I have the worst labile blood pressure of anyone I've read about here so far - and meds only make issues worse..... I've this week taken Bystolic 2.5mg, plus dyazide, plus 320mg of Diovan to bring my pressure down from 160's over the 110's..... Then dutifully I crash where tonight it's 83/53 with a heart rate in the low 50's. My normal hr is avg. of 100. So the meds and the lability of the blood pressure have left me with exercise and fluids to try to help. Standing for 4 hours at work - has me compelled to lie down or else I'll faint and puke - today I almost had to pull off the road driving home... So I layed down and rather than get depressed I did just what I did yesterday and that was to exercise in spite of how low my b/p was because exercise seems to be about the only thing to bring it back up. I skipped the dyazide today and tomorrow will stop the Bystolic again until I get high b/p again and the head ache that goes with it -- and we will begin again -- Isn't that crazy? Anyway - I get super painful toes and feet from neuropathy of unknown origin and my body pain episodes come after exercise not during.....so I just do my hour long walk and then hit the bed with a couple pain pills. Or I'll do the recumbent bike for an hour at a health club. Or do my physical therapy routine for an hour and a half and then lay down. It's a rather poor quality of life truly to have to be made to do activity and then lay in bed alternately every single day of your life......But things could be so much worse I know. So in the end I choose exercise because I get too frightened not too - it makes me feel alive. It causes pain - sure - but I must lose weight to gain any health advantage I can so I just endure it. I think they say it helps your mind too - and I've got a horrible memory etc... It helps mood too they say but I'd be hard pressed to say how lol.... I hope Mayo clinic can figure out what the heck is going on with me next week - and give me some treatment options. I have to have an MRI tomorrow in the morning of my brain with and without contrast to confirm or rule out an old lacunar stroke.... They say for every hour you exercise you (theoretically at least) add two hours of life or longevity to your life........ So maybe that's why I deal with the discomfort as well.... At least I'm not as tachy as I was before the bystolic --- I used to get this bounding heart rate that pounded for hours and hours -- sometimes if I could sleep a bit I'd wake up and have things lock back into a normal rhythm and force of beating........so sweet! Anyway that's all I know about exercise - it helps me lose weight, helps health, makes me miserable, but raises my blood pressure when it's too low.

MCV and MCH elevations are sometimes early signs of liver damage from alcoholism as well I learned when I was a nurse.... Not that that's the case or has anything to do with your case etc...but I toss it out there. I don't drink but rarely but my brother and I have had those numbers high or borderline high for a long time. Our hb and hct though are high in the normal range......we have no idea why ours our high for a lifetime tho.

I've gone to every four months a monthly cycle - and in January had what may have been hot flashes - my first ever at 53. But at the same time a lot of ANS type symptoms. So I don't know what's what. Anyway they went away till about two months ago and I had a few weeks of multiple times a day hot flashes. I guess I'm lucky because they didn't really bug me. They were there, they were warming for sure - but I guess I live in such a cold part of California they felt good! Seriously where I live I put my heat on all summer long. Then out of the blue they are gone again for a month - and now they are back again - but only one every few days. When I told my gyn doc - he said he wanted to do a pelvic ultrasound to make sure everything is 'thinning' as it's supposed to - if not he said he'll do a biopsy. He listed some herbs to help and then went on to say an off-label use for Effexor is for hot flashes (at a low low dose)..... So since mine aren't disabling - well hopefully they never will be - I haven't considered any treatment options. But it sounds like there are definitely nice doctors that will try and make your quality of life much better while you endure those hot flashes -- best wishes to you!

Keep on task in getting your answers -- be it Mayo, CC, Vanderbilt - there is always always a new tack to try, a new plan to make, a new face to see ~ truly we are the only ones that limit how much we'll do to get answers..........if we are blessed with insurance & means - a huge blessing that is for those that have it. So I'd try to fight for what you deserve - a happy life with as much clarity on your symptomatology as possible ~ with the best treatment options to improve your quality of life. Yes we get tired, tired and confused, tired and weary of the path .... but the only way to truly lose is to get off the path or give up. So please hang in there - I've said a prayer for your pain to ease......& for answers and solutions.... Best wishes!

Glad you wrote - sometimes venting about the awful injustices we endure while we're struggling - is really healthy....... Just getting it out there and out of the inside of you hopefully will be healing. As to what happened - you're right it stinks. Big time. Sometimes it's the kind and generous souls that seem to get trounced on. People cringe and shy away when they see all we deal with and that we keep on going - we keep managing a smile now and again and we still are generous and as helpful as we can be - in our pain. They on the other hand are likely not so uncomfortable about your discomfort and pain (they are too selfish for that) they are uncomfortable in their stinking guilty conscience - yet they are too dull to know. You remind them of everything they are not perhaps. Well good on you and shame on them. May your light out shine any darkness they exude.......may your good example bring healing - You are one strong person - this we know........ Be at peace ~ you did nothing whatsoever wrong to incur this.... You deserve supportive, wonderful, like-minded, compassionate friends to travel life with ~ may they continue to filter your way!

Your doctor and the neuro I saw might be the same guy .... the conversation went the same way -- so I truly know how hard that must have been on you because I went through it almost verbatim. First was the question, "well are you working?" I said no I am on disability. He says how do you make ends meet? I told him disability insurance. I told him I tried working and got fired because I couldn't keep up with the demands of the job.....though they truly valued me as an employee and hated to let me go. He then tells me to get therapy. I tell him I've had a full year of non-stop physical therapy and then he said, 'no not that kind of therapy - I'm talking about counseling. Counseling you see can help fatigue'. I wanted to slap his face straight on but of course wouldn't ever do that. He's this young wet behind the ears guy who was made the head of the neuro dept. at a major university......I get angry just thinking about that visit. To add insult to injury - the local neuro doc tells me that I have to prove to the world that I'm sane and go for psychiatric evaluation because of what he wrote in my chart. To which point I pondered my horrid luck in getting two goof balls in a row for neuro. I would imagine they are helpful to some extent for some people - and if that's the case I'm grateful - But for me they cause harm and that is one thing a doc is not supposed to do - cause harm. So as I distance myself from that trauma - I've had nothing but caring clinicians that are doing there best to diagnose and help me and everyone of them has been kind and told me to forget about those visits and press on for answers as they still can't explain my case with any answers...that make sense.......I'm still in the middle of diagnostics - so time will tell ... I guess it's a badge of courage you get for having to go through those kinds of visits - YUCK my heart goes out to you! Stay focused and work for what you deserve - a happy life with as much health as is possible!

I've had that syndrome mentioned more than once - when I had arm pain after having knee replacements right and left. Then both arms and then legs and then pretty much bodywide pain. Yet some said it was my hypermobility syndrome. I don't really know. I went to a podiatrist - a new one and told him it feels like sharks are gnawing on my toes every night and to some extent the later hours of the day. He said that an interesting point that much of the public is unaware of is that neuropathy or pain in the feet that's at night and not related to walking pain - say from a neuroma - is that up to 25% of the general public has it - and absolutely nothing is wrong.... Meaning no disease state in specific causing the the neuropathy. He's right - I didn't know that. I take Norco for pain. Didn't like the appetite I acquired while on Neurontin. But truly the bottom line for me is that most medication have me feeling foggy and out of it even after the initial 'get used to it' period is over - and nothing yet has helped my symptoms of pain behind the knees, in my feet, the stiffness and pain in my hands and elbows, neck and shoulders even. I may try low dose Methadone soon as I'm getting to the point of hating to have to take pills 3 to 4 times a day for mild relief. I was terrified of the idea at first - but after 2 years of no one knowing what's going on - I guess I'll explore my options to help relieve the pain - even if it's Methadone. One doctor suggested I try a different pain management guy that does a lot of diagnostics for bizarre and odd cases that are particularly hard for regular specialists to figure out. He's in Marina Del Ray California - but I'm not ready to go that route just yet.... I truly truly hope that you can push through this latest diagnosis with courage and hope and all things good that bring you to healing inside and out - you deserve the best life you can live for sure!

I too have the worst memory issues ever. Yuck! I can't find my keys, I can't find FREEEKING ANYTHING!!! I get soooooooooooo irritable over it. I lose stuff just milliseconds after I use it. It happens probably several times an hour! I break down and cry over it. At least with my cell phone I can call it to find it - and I do = at least a few times a week. I'm getting very sad over it all. I'm having a brain MRI on Thursday cuz a head CT showed an old stroke - but my doctor doesn't believe I had one - so we'll see. I'm 53. The CT said I had a bunch of white matter that isn't normal cuz of ischemic changes - yet my carotid ultrasound came back pretty normal.......Oh so what was I typing about? What was your question - Pots and memory - okay - yes I hope to get some answers at the Mayo Clinic next week in Arizona - we'll see........I'm not going to get too excitied - no one yet knows what to do with me - and one thing is sure though - this is a great group of understanding people..... I may have a dysautonomia of some kind - who knows - I'd be really happy if I could have a remote alarm on my key ring though so I could find them when I need them........I'm open for suggestions! Oh and does the pooling of blood cause lack of adequate blood flow to the brain? I wondered because of the brain ischemia on the CT with normal carotid ultra sound - does anyone know?

I have no answers but you seem quite intelligent and with persistance I bet you'll find some answers. Perhaps a new medical center altogether - even in another state if necessary. I got told my bouts of low b/p and feeling nearly ready to faint were due to venous pooling. Then a holter showed an avg. heart rate of 100. And short runs of atrial tach (a type of SVT) with a few PVC's for good measure. I got put on metoprolol to slow the heart down and stop the palpatations. It didn't help much. My blood pressure is being treated for being too high - but the cardiologist was to frightenend to treat it with additional higher dose meds for fear the low episodes would have me actually faint. My low's are almost exclusively related to me standing for longish periods of time. Then I noticed postural Hypertension......where my b/p would rise upon sitting and then standing over 30 points. So like you I'm still looking for answers. For now I got switched to 2.5mg of Bystolic - now anytime I take my pulse it's in the seventies. I sweat a lot - not sure what that's about. My blood pressure is a bit closer to normal finally - but everything changes just when I think I have it figured out. Be persistant - Keep a 3 ring binder with all your test results and consult notes in orderly tabs - it will help you and your next round of clinicians immensely. And be careful if you are driving - fainting and driving do not mix - I've had that feeling once or twice while driving and it's ridiculously scary - I just pulled off the road and drank fluids at a restaurant till I felt better. Best wishes to you!

Absolutely 100% yes! Mine started inbetween back to back knee replacement surgeries 2 years ago. I was peeling apples for a pie near Thanksgiving - 3 mos. after the first replacement and one month before the second - and my hand and arm started hurting....I freaked out because it made no sense at all - you don't get joint pain from peeling 6 apples.... Things got only worse. Suddenly every morning (& this persists to this day) became hellish. The moment I open my eyes I am aware of where all my joints are.......they are stiff beyond belie & sore and I have to manually move my arms about at first with my opposing arm. I teeter on my feet to the bathroom holding onto furniture and walls and window sills. My right elbow got so painful I had a cortisone shot in it to help. I started dropping things and couldn't hold a cup, pot or pan for a bit. My arms felt heavy as well. My right leg would buckle and I could only manage 3 to 4 hours of activity without being compelled to lie down. My toes at night felt like someone was biting them. None of it explainable. Then one doc thought hypermobility syndrome & I got that confirmed at a university medical center. Still though even they said a lot of my story was a bit atypical. That is aka Ehlers-Danlos type 3 or the hypermobile type of EDS in some circles. Well I tried going back to work part time and found often in spite of pain medication and rest - I could not keep up with the demands of the job and I got let go. I was pretty devastated. At that time an ortho doc thought maybe I had MS. I made the rounds of neurology, oncology, rheumatology, ortho etc...& got the mention of psychological causes only from a neuro. I was like - yeah right! Once when in a home for my job I remember checking my patients pulse-ox and I was sweating so terribly (I never did sweat in my life like I do now) that I checked my own pulse-ox - and my heart rate was 140 - from merely standing in someones living room. Whatever was going on wasn't letting up. My right leg wouldn't go up a curb - till 6 months of physical therapy got me there - & even now I stare down a curb before I attempt it. My balance isn't normal at all - but I've only fallen twice - more related to my clumsiness than anything. Evidently the problem isn't with the joint replacements either because I had all the tests for that at a huge medical center. Next came the radical shifts in blood pressure in a day - High most of the time and then out of the blue really low .... ??? Episodes of flushing, bounding heartbeat and heartrate........cardiology noted the lows in b/p came after standing periods of time. I took a new job where I stand four hours a day and then I must go home and lay down. I feel like crap for a couple of hours while laying down and then things seem to equilibrate - 'cept for the sensation that shark on gnawing on my toes. I get up and do a bit more in the evening - to hit the bed with the most persistant case of insomnia my doctor has ever seen. Then once awake in the morning it begins again - the stiffness, the pain etc... Usually however after being awake for an hour or so - and moving despite how I feel about it - my symptoms improve greatly. It's like I go from 90 years old and crippled to a 70 year old for a bit and then finally I get to feeling almost normal (aside from heart palpitations and the flushing and sweating).... One day a week or so ago I had the worst headache of my life - associated with a very high blood pressure again -- a head CT showed a lacunar infarct or stroke. My primary care didn't care to investigate further - so I went to my cardiologist who said he didn't necessarily believe the CT scan so he ordered a brain MRI....I believe that will be done this Thursday. I found this website and it has been a real Godsend ~ I will give a last try and trying to have someone explain this crazy life I now live........maybe I did have a stroke? If I did maybe I got some sort of pain syndrome from it? Or not........dunno........... Anyway - just another person's story for you to read - Bless you!

I know I struggle with an 'invisible' illness which is disabling. Yet I do believe there are times I think I've imagined it all when I'm feeling almost normal and pretty strong. Then again I have weeks that feel disastrous in terms of productivity, pain control, mood & energy levels. I've got that EDS/HM or Hypermobility Syndrome and I have read in forums that this can account for a lot of disablility in lives - and that it can come and go in severity - pain, fatigue, insomnia etc... Though I'm pretty sure not all EDS patients experience dysautonomia.... Here as well with dysautonomia issues - I again read about 'flares' or times when it seems your vital signs are peculiarly but familiarly way out of wack - moreso than usual for the individual. So I'm hoping to read your recent experiences with flare-ups - like how long do they last, do you regain pre-flare energy etc. soon enough in the end? If your cause for POTS or other dysautonomia diagnosis isn't autoimmune - do you still get flares? Is this common knowledge amongst informed medical clinicians - like they expect to hear this type of symptom pattern? Or is it the 'underground' of common experience shared - with little backing through doctors... Thanks everyone!

A very timely thread/posts as I sit feeling very frustrated in a very untidy apartment. All my energy goes to trying to work for 4 to 5 hours 3 to 4 days a week. I recently went away for a weekend and never unpacked. The must haves are laundry for work - it sits 'done' all over the living room in piles. The kitchen should be easy - as I live alone - it's a disaster area. I am overwhelmed. I got home from my 7am to 11:30 am shift and slept till 5pm........woke up and thought it was morning -- I rarely sleep a chunk like that so I was ecstatic - But to look at the mess around me I'm distressed. I simply cannot keep up. It's been that way for awhile - if 2 rooms get done - 3 rooms are not and on it goes. I am working furiously at losing weight - so I use extra energy for walking long distances. Then I must lay flat to recover. The start and stop, bending and stooping, sweep and vacuum type housework is for me absolutely exhausting. So my priority used to be clean house then exercise -- but the weight wasn't budging. Now it goes exercise first then housework - and true to form I can only seem to muster one or the other not both :-( I've tried to lower my expectations and fail miserably at it. I can't wrap my head around the fact that a reasonably healthy adult can't keep up (me). But berating myself is not healthy either. I used to push through just for the fact if I should stroke out in the night and they find me paralyzed or worse I would not want 911 to see such utter chaos in the home. So I guess for tonight I'll focus on just one room. That's it. Then I'll go to work again in the a.m. -- and recover -- knowing I took a stab at the impossible. Some say I'm hard on myself.....I simply like a clean home -- who doesn't! I know something's "wrong" - one year ago I could not even work part time.....I got let go for not being able to keep up - long before I knew about dysautonomia - or the fact my avg. heart rate is 100. So at least I'm working -- that's good for mental alertness etc... I'm having a real hard time with this "invisible" fatigue issue............desperately want to figure out what's going on and how to fix it. That's why the dieting on Weight Watchers -- I don't want any of this to be due to my own fault.... Thanks for the vent time!

Thank you ~ you are so kind to write. Off and on last night I was tossing and turning - trying to put it into the history of all that's happened in the last 2 years.......... But truly in the end - you are right - this could have happened anytime and does not mean that it caused any symptomatology at all. I do see my cardiac doctor just before the Mayo Clinic to ask him about it -- No one could explain to me - & I saw a lot of docs - why my right leg would not lift for about 9 mos. after the right knee surgery... It took a ton of physical therapy just to get it up a curb. Even now when I go up a curb - I get a wave of anxiety and have to very carefully think about how to get that leg up the curb. I do go up and down a step at physical therapy even now for exercise and my balance is better -- but anyway I digress.... I'll go back to my primary next week and tell her again about the week of low blood pressure - that is now on a trend upward & mention the CT to her.... I truly hope this neuro place takes fantastic careful care of you -- blessings to you! (Sorry about your chronic pain - I now deal with that as well - it's no fun for sure)

Hi ~ Still battling these hugely labile blood pressures.....though HR hasn't been too bad lately. One tab of Bystolic was too much -- but it knocked my blood pressure down for a week. Tonight the familiar headache is back - and hence so is the Bystolic. I took one half a tab as my doc said. 2.5mg. All week it was 90/60's and now the diastolic is 104 - sigh - again. So I'm collecting medical records for Mayo Clinic in a couple weeks and I get my head CT Scan from 7/7/10 and it reads that there is evidence of remote small vessel infarction in the right basal ganglia -- and again 'evidence of small, old lacunar infarction of the right basal ganglia' I guess I have some age-related ischemic changes as well. I'm 53. So does that sound like the stroke that I'm so worried about already happened? That's what it looks like to me - and if it does mean that why wouldn't the doctors tell me about it? Now I wonder about all these crazy movement issues I've had since my knee replacements....that were attributed to joint hypermobility syndrome. Also my chronic pain syndrome that crept up after the surgeries the end of '08..... Makes me wonder how much of this confusing picture was or is due to a small stroke..... Anyone else ever find a little stroke 'incidently' ? Now of course I'm more terrified of this wacky high blood pressure that fluctuates to low...... So I guess I'll just say ....... Now what! LOL

Is Mayo used to patients being misdiagnosed? I hope they are sympathetic to patients who were touted as needing psychological assistance to push through fatigue.... Having been burned by that -- only to find I have true issues with vital signs that are seemingly dysautonomia manifestations from hypermobility syndrome - I'm pretty sure I'm going to hand carry the records that may play against my work-up's possibilities through doctor's bias and if at any point in time it seems necessary I can pull them out in person. I was told to FAX and mail everything ahead of time -- wondering if I should have my doctor write a summary of what's going on so the Mayo doc has someone of his league to bounce things off of. I made the appt. and was told I didn't need a referral - while all of my docs want me to go there - I have nothing summed up by any of them as the scheduler said it wasn't needed. If all of your films were done at the same place - maybe they could put them all on one disk for you? I know my mri's from a couple years ago are being put on disk now as well as a head CT from the ER a week or so ago. The MRI's were neck and lumbar spine. I'm not sure I want to include any local neuro notes in what I fax over -- they have been the least helpful of any discipline thus far.........yet it's neuro who I am going to see soon....... Got accomodations for only 33 dollars a night in Scottsdale -- truly lucked out and the place has a substantial made to order breakfast and a free Happy Hour nightly..... <---- Will I need that? LOL!

thank you mountaingirl! my doc called yesterday and told me to do just as you said and try cutting the samples in half and take only 2.5 mg. my pressures yesterday were okay - but I had the diuretic on board. i didn't take the bystolic today because I hated how it made me feel -- for 4 days from just one pill. I think tomorrow I'll start fresh and give it a go....only hesitant cuz my mayo clinic appt. is coming up in a few weeks and I came to think that maybe I don't want to confound the diagnostics by being on it -- Guess i'll run that by the doctor too...Thank you for sharing your experience - it's helpful!

Can you share what kind of doctor discovered your hormone defiency(s)? I was told by one rather simple blood test I was in peri-menopause couple years ago .... Just ignored the news and kept living -- In January hot flashes (I guess?) began -- funny though - they can be so different - like one an hour ...... for a couple of days..... and then none. I live in a very cool temperature area in summer and I was actually starting to miss them because I was freezing and they would warm me up (I know how weird is that) Now and again I'd get big rushes of bounding heartbeats etc.......... Sometimes just facial flushing....... Heck I had a monthly cycle till then one the end of Novemeber last year....one March 1 this year - and none since. Now I just feel nauseated and dizzy and not sure about menopause because I know no one that's been through it to talk to. Kinda ignorant about it all -- I see my ob/gyn next week and I'll ask him what he thinks. I have never sweat in my life and now I sweat ALL the time - enough to have me buy breathable athletic apparel so the sweat doesn't show! This with the ANS stuff and hypermobiity syndrome makes life challenging lately...... Does menopause ever officially end symptom wise? I have no idea what my hormones are doing or which one's they check for this stuff... thanx for any helps

Thanks so much for your timely reply.....it's truly been me trying to figure all this out and my doctors nodding they agree this is what's going on - pots type stuff. So I'm glad to hear that he's familiar with this sort of thing....I've got that hypermobility syndrome which is probably why I have the symptoms - well they are linked in studies anyway. I think I will get a one way ticket - and Hotwire a room for one night before my appt. and one night after only -- That way if he has no desire to test etc.. I'll just fly home right away. If he would like tests etc. Then I'll Hotwire either the same hotel or another as I do notice there's lots of options at good rates now for sure = for the week or however long he believes it will take. I'm glad you explained things to me! Sounds like a cat-sitter may be in order (she's not gonna like that - poor kitty) I've not been scheduled for any tests - but I think that might be because the scheduler took brief info over the phone and she said, 'oh with your insurance you don't need a referral' - though all my docs are willing to write one. When I mentioned EDS - she almost cancelled me! She said, "we don't treat that" -- I said please don't misunderstand - I was merely giving you a history as to why I have supposed dysautonomia - wow I almost blew it! Anyway I am anxious because I'm not sure she understood what I was trying to say....as regards my symptoms and my history. Hence no tests ordered or scheduled ahead of time -- Well tomorrow I'll try to collect records and send them to her as quickly as possible. Most everything done so far was to address figuring out the EDS part of it -- then some cardiology stuff as my vitals are wacky and I have exercise intolerance I guess.... I LOVE Arizona ~ I'm really lucky Mayo is there.......Yepper it's WAY hot.... Maybe by mid Aug it'll cool down..... I know dream on..lol thanx again!

Yoplait now has a Greek style yogurt in vanilla-honey, raspberry and some other fruit flavors for about 130 calories -- The good thing about it is that it has twice the amount of protein as any other yogurt -- They bumped it to 12 grams....I think it has 19 of carbs. It says 2X protein on it. I only mention it because fitness trainers will tell you that your body loves dairy after a workout as the first thing you ingest.......absolutely don't know why or what dairy does - but if it doesn't bother you - maybe that kind of protein could help at breakfast. It's a $1.29 for a six ounce carton where I live..........good luck to you! Oh and I got my glucose monitor for free by talking with the nurse that my insurance company provided on the phone.........these phone triage nurses that work for insurance companies can do things like that if you tell them what's going on -- I think I had Pacificare or United Health at that time -- now I have different insurance - but you could check with yours if you have it and see what the nurse can do for you.

Wow I don't blame you !! It seems that if you go to a cardiologist and look healthy - suddenly a blood pressure with the diastolic above 105 isn't an issue..... Yet I'm a nurse for 25 years and in the hospital it was always a big deal -- it was thought of as rather dangerous even. So I will again try to get my pressure under control somehow - maybe she'll let me take a 1/2 of a tablet and titrate to my need somehow. Even if it's every third day or so -- I'll find out soon enough I guess. What type of doctor diagnosed your POTS? My geneticist for EDS-HM just didn't get it when I sent my cardiology work-ups - he was ignorant of the dysautomia facet of EDS and tried to tell me tha my cardiologist was looking for just orthostatic hypotension........that's not the case at all. Yes I do think I have some venous pooling and my pressure dips when standing for hours -- but I have orthostatic hypertension ~ Anyway I'm really glad that medication is helpful to you -- it's such a neat thing to get a good fit!

Thanks for sharing this - I have read others like it - but not this one in particular (but then again maybe I have - I love reading these studies!)........Pretty interesting, for sure. I've got that joint hypermobility syndrome and lately just feel pukey with all the stuff that has yet to be formally diagnosed and treated ANS wise -- well I guess it's semi under investigation.... It truly is a "syndrome" that is multi-system in it's effects ~ so much interesting stuff to me anyway about how we interpret pain, proprioception of body, the correlation with anxiety in life -- it's mind boggling how complex it is.... I had an adenosine stress heart test a couple years ago and it was bloody awful to endure - felt like I was dying and felt like each breath I could manage to gasp was gonna be my last - later I read that hypermobility syndrome patients would expect to because of how they were finding we were wired up in the autonomic nervous system....It's simply amazing -- anyway that's how I found this website -- was tachy and dizzy and confused -- but unique and not textbook - I seemed to have hyper symptoms and other things... Hope you are doing well this evening!

Overweight and using Weight Watchers with success currently......Before that used the Livestrong website The Daily Plate -- and it works well too. The information is better I think on Livestrong.com too -- but there aren't meetings for it. I go to the weekly meetings and track what I eat with the points system which I have an aversion to.......but I have an aversion to being overweight moreso -- so it's weight watcher tracking I do. I have GERD, a perpetually 'red stomach' on endoscopy even with Nexium or Protonix for years. Extensive diverticulosis - past hx in my 20's of IBS. But a lot of that is probably the collagen issue or EDS-HM issue. Lately nausea, Nexium must be twice a day -- heck lately everythings going nuts........ Which I guess is all the more reason to lose weight slow and steady till normal again -- in a years time I think I'll be there.... Walking is really helping a lot -- I think I used to eat away my 'I don't feel well' issues...... I need something salty, I need something sweet, I need to have a full stomach to help me sleep blah, blah, blah.......Now I'm trying to walk away the issues....it doesn't necessarily help how I feel - but it helps the scale move down a bit!

Hi Again.... The test you were referring to about your blood sugar is the blood test called the Hemoglobin A1C - reflecting 3 months avg. blood sugar.........It will give a number within a range -- if you are over 6.0 most labs will consider that a bit high...Some labs will then calculate what they estimate your average blood sugar was in the last 3 months. So if I'm a 6.1 -- My average might be calculated to be 128.......not terribly high -- but enough to keep an eye on as it's looking pre-diabetic. Then the doc can check it again in another 3 mos., 6 mos. or most often a year if it's okay (say less than 5.8). I would agree it's a pain but good advice to get yourself a nice big 3 ring binder. Put tabs in it. One tab for MRI's, one for bloodwork, one for X-rays, one for consult notes, one for physical therapist notes, one for CT scans, another for EMG's........you get the idea. Then after your appt.s at varying or various clinics call and make sure you get sent a copy of the doctors note. If your labs are at one hospital or lab - request a copy of them. Get it all together - it takes a bit of effort - but in the long run it can be helpful for you and for your caregivers. Especially nice and organized for complicated cases as we tend to be. Hang in there -- diligence and persistence can help alot -- but only if it's mixed with plenty of time for you to be kind and understanding to yourself -- bringing distractions of the healthy kind in as you are able....a walk, a movie, a book, a game with the kids...........or just a blessed nap. Whatever it is let it remind you of how lovely and special you are - though under the weather as of late to be sure......... Maybe a bouquet of flowers or a favorite cup of tea or a nice bath.........something to pull you up and out of this just a wee bit........it's happening TO you.....but it isn't you....... May they sooner rather than later get to the root cause of your symptoms and some relief come soon I pray...

Thank you! I ended up taking one pill and I went for four days with low blood pressure and felt really quite symptomatic -- so I didn't take it again - that was only 5mg too - she said you can go up to 40! Well not me evidently lol -- I feel kinda cruddy with a b/p about 90's over 60's. Anyway first tab was Tuesday -- It's saturday night and finally my blood pressure went to normal today. Then an hour ago it was high again :-( 152/104 Crud. So I guess I'll go back to the Diovan and start up the dyazide diuretic daily until I can call the office on Monday. Not that she'll know what to say! She's as stumped as I am and is glad I'm going to Mayo in August...