comfortzone

I know how you feel, due to my severe adverse reactions and hypersensitivity to all autonomic depressing and stimulating substances I had to actually have my colonoscopy and gastroscopy without any sedation and I dont mean to scare you but it was horrible, like some form of torture. But you gota do what you gota do.

Endure I'll buffer your horrid experience :-( With a good one. I do my upper endoscopy's without any sedation and do just fine -- even allowing them to stretch any esophageal strictures. For some reason I just imagine them doing what they do - sticking a tube down where food normally goes down - let them fill with air and whatever else ... pull the small flexible tube out and be done with it. Maybe it's not supposed to hurt the upper ones ... or maybe I'm just lucky. You sound pretty darn stoic or courageous or both....hope you can avoid any tests like that again!

40 pages! Yikes! Seriously, good luck with that.

Agree with Issie... please keep us posted on this.

I know you potsies are all so different, but if it's helpful, Michael is hyperadrenergic with high norepi levels lying and standing. He's doing better than ever on Toprol XL and Clonidine. The clonidine has transformed his sleep to a semi normal pattern. And just a couple of hours to wake up instead of half the day. He was on Inderal before, but the toprol xl is just smoother for him.

Dianne

Hi Dianne :-)

I got a call from Dr. Goodman's nurse and she said he'll speak with the b/p doc I found disagreeable and that they will call with recommendations. I really want to try clonidine. It's been mentioned by my pain mgmt. specialist - I just sense it may be the best for my b/p -- a low dose at night perhaps. And of course my b/p has 'suddenly' become a bit more normalized......I still need better control for the high's -- but the very low's haven't come up in the last couple of days :-) Toprol wasn't enough control for me - but Bystolic seemed to target the highs quite well... The thing I noticed though was with standing it worked a bit too well. I'm sure it will all work out fine in the end

I'll do whatever he suggests... even if it is to not take my bp -- I trust Dr. Goodman. I'm glad Michael has a med profile that's working better - that was fantastic to read!

It took me all day to do the paperwork today for Dr. Francomano....Her part was 32 pages and then I copied my genetics report from UCSF - for an even 40 pages... Truly I didn't even do that great a job on the family history part about aunts and uncles and cousins and their similar maladies if they had any -- because I needed to get it mailed today to get a December appt. Then once it's in - I'll work on getting any details I can find....I have 7 sets of aunts and uncles and a near 30 cousins!

Not long ago I spoke with a woman who had truly miraculous functional gains through Tai Chi. She talked for near half an hour about how doctors at big medical centers wanted to do all these invasive things for her becoming like a big puddle of pain and weakness with no known 'certain' medical cause.....her mother was frantic - University of Michigan wanted her to do these odd things. Well she ignored everyone's advice and took up Tai Chi --- and every single symptom resolved. This woman I do not think of as 'off' or a quack or any such thing. She's a wonderful lady. Suddenly two years ago these symptoms started to come back - and she learned it was caffeine that was the evil this time around....got rid of it and a couple other diet changes and she resumed her normal good health again. Now she has a significant other with some chronic health issues and she has signed him up for Tai Chi..... I'm happy to read here again how it helps people and down the road here in a bit -- I would like to maybe give this a try if I'm not too limited by my physical issues. I'm convinced though I'm a skeptic and a western medicine health professional by career in the past - that there is something here to powerful to ignore. My brother and sister are really into this kind of thing too. At their suggestion I once tried acupuncture - only to find out I got the only 'true' quack in 3 counties....just my dumb luck I guess - I never went back - but do have a very funny story to tell....wasn't so funny at the time - but still a quack is a quack and this was pretty bizarre for sure!

Well, I got no new information on the pots stuff at mayo... but it's okay! I know they tried their best.

I did find out that I have TB antibodies so I have to take the medicine for the next nine months. This means I need to find a primary care person at my school because I have to go back to them for the refill every month to make sure my liver doesn't explode and stuff like that.

But how in the heavens am I going to explain all this stuff? I feel like I need a very experienced doctor who is prepared to handle my five zillion medical problems. I don't even know how to start the process, but can anyone give me some advice about this?

Like, do I really need to find one who knows what pots is? Or should I make sure this doctor knows what he/she will be dealing with before I pick her/him? Or do I just randomly pick someone at a clinic I trust?

Thanks friends!

Elizabeth

Wow - good luck with that one - I will be moving to a new city and getting a primary is a daunting task. Until I started thinking about it. In actuality if they have a problem with things POTS related or EDS related or whatever it all is - then it truly is THEIR problem and not yours. You will find yourself most likely in any situation - good clinician or lousy clinician - to be more informed and intelligent to speak with on many issues than they are equipped to deal with.

It's a blessing and a curse I guess. For one thing your education brings you strength and conviction to live your best life possible. You know you are a special case so to speak - and that is no longer a surprise. You've waded through those waters and now you need to persevere to wellness the best you can and NOT get discouraged - or do not stay there if it does happen (as we know it can).

It takes a bit more 'people skills' and strength to go to a doctor than most of the population. You don't feel so well and then are at risk for being misunderstood, labeled, misdiagnosed, glossed over and the rest of it.... Yet we KNOW this ahead of time.... So what to do to remain strong remains the question....

Well personally I made an appt. with a colleague of a primary mentioned by a member here whom her son sees. The recommended doctor is not taking new patients - so it's a 'risk' - yes -- but heck - it always is to some degree. Some personalities just don't click. Some interactions are bad. On the other hand you just may find a gem. It remains to be seen -- so go ahead and make an appt. with the suggestions people offer here - and know that if it's a bad fit -- well then it's a pain in the rear sure - but truly it's nothing more than a bad fit. And you try another one.

If you know a nurse or physical therapist or lab person or anyone that works at a local hospital it is good to tap them for info on who is known to be a very good physician. You can always be tricky and talk with volunteers, HR departments - heck you can sleuth to the best of your abilities if you have the energy and something may pay off.

If the doc you choose does seem overwhelmed you might point that out to them tactfully and ask they refer you to the appropriate physician for your multiple areas of health concern... Nurses are a great resource so check with them if you can somehow.

What I have done to be helpful is keep 'the black binder' of all my medical records....under tabs in many sections for the consults, diagnostics, therapies and treatments, CD's and such for MRI's etc... That way I can reference anything done recently for the doctor to read. I received the paperwork for my new primary care today and you have to tell them a lot of stuff on that - whether they read it or not is questionable. But it does take time to fill it out and you can stress what your major concerns are and what they will be. It's part of building your team -- so you can go into the future well cared for and getting stronger everyday - inside and out. Good luck again!

Do you have hypermobility syndrome or EDS things as well?

It's pretty common for EDS'er's to have the issue where local anesthetics just don't work as they do for the normal population. It usually will require more medication than usual - it just doesn't seem to work until you get multiple injections in the gum for say a root canal.

I guess the reasoning goes along the lines of the collagen matrix is different and so the absorption rate of the med is different. The medication is absorbed I've read much more rapidly....so that leaves you with no numbing medicine left in the area that needs numbing - hence more shots.

My experience in my 20's was NO medication worked so I ran right out of the dentists chair and down the road - he was torturing me in an extreme manner. I found another dentist who believed that the infected tooth's PH was off as happens with infection so no amt. of numbing medicine would have worked.

Late though in my 40's after having 8 crowns and the root canals under them....I still always needed more shots. One time I was taken to the ER by ambulance when a procedure took 2 hours or more.... I started shaking like crazy and my heart was pounding like crazy. Overnite observation showed all was well - but I scared the heck out of everyone there and myself too!

Then in my 50's I learned I had hypermobility syndrome - and all about how it's pretty usual to need many shots.... Well if the shots have epi in them - you absorb the epi super fast - faster than usual and get symptomatic. The dentists like epi though because it's better to control any blood or bleeding.

Now I get super anxious just for a teeth cleaning. I try not to be - but that's a vicious cycle. If they are matter of fact and do things quickly and efficiently I do pretty well......but always feel on the verge of a panick attack. I tell them what happened that one time so they don't wig out if it happens again. Why I would feel that way without any shots is now beyond me.... But it is what it is...

So again while I don't have pots I do have the hyperadrenergic responses and other things - perhaps related to hypermobility syndrome....or some neuro things.

Some dentists have TV's at the ceiling -- pretty cool the one's I've seen! I think I will opt to ask for Ativan or some such thing for my next dental appt. in a new city....I'm tired of having to 'be brave' LOL Good luck to you :-)

Speaking of weakness in the legs.... It's worst for me when I squat. I even have trouble getting up off the toliet sometimes. HOWEVER, I've been doing high volume, low intensity leg presses lately - 30 % of my maximum, 4 sets per session, each set to failure (aprox. 40 reps per set) - since I started doing this I've been having less trouble squating and getting up.

I appreciated your post. Squatting, stooping and crouching are too for me the worst. PT knows that if I were to fall I could not get up off the ground. They taught me 'how' but it remains I would absolutely need furniture or something to assisst me in getting up. I've gotten stuck on toilet seats in public places....once nearly tore off a sink faucet using it for leverage to pull me up....thank goodness it didn't pull loose -- that would have been quite a scene to say the least lol... I've had hip flexor issues for five years now. I believe they think perhaps some permanent damage was done to the internal and external hip rotaters during a surgery.... But after the right knee surgery - when I couldn't get that leg up a curb for at least 7 mos....they now believe I had a post-op lumbosacral radicular plexus neuropathy. But how much of what I have now as a residual - is unknown and a frustration. When I tried to do functional PT - some of it practicing sit to stands on progressively lower seated surfaces - I had big issues with hip flexor and or thigh pain....that put me back on a walker for a couple of times a day for a couple of days.

I called Physical Medicine and Rehab at Mayo yesterday and am going to give physical therapy another try their way. I might as well - at first I balked because I've been working at this issue for so so long - what could they possibly do different....But in the end I changed my mind and think I'll give it a shot. I want those thigh muscles stronger - or whatever hip girdle muscles can get stronger to do just that ... I just have my sincere doubts I guess that they'd have a hook that works somehow better than what I've been trying.

From memory I believe my lying down numbers for all the catecholamines were normal. The standing one's were in actuality normal as well. The thing that stood out to the physician was that the difference from lying to standing was that the norepi tripled....or put in his words "showed a robust increase with standing"... So while I didn't have it get knocked out of the ballpark - it was a notable sharp rise...to the very top of the normal range.

Yes I hope to get one last appt. in about EDS things by years end...& I absolutely will share any gems I learn. I just got the paperwork from Dr. Francomano's for the pre-visit stuff ....... almost 40 pages to fill out! Genetics at UCSF had some paperwork - but nothing like this. It will be a true privelege to get to see her if it ends up working out... I hope it does. I should probably take careful note of the questions I need to have answered or clarified.....& start jotting them down right now.

I was checked for Myasthenia Gravis, but the test was inconclusive, in the zone between you don't have it and you do. So, the doc said I didn't. If I do nothing else, I can walk/exercise and do normal things like anyone else....one day a week. If I try to do more, I'm weakened and incredibly sore for days. A half a mile walk has never hurt my muscles this much in my life! I can't seem to make any gains at all, or achieve any conditioning. It is very frustrating.

I am so sorry you are going through this! Yes it is horribly frustrating and I do pray you can find answers and some helps for this...

Your story about mobility, painful afterwards.... losing your conditioning fast -- all of that I relate to 100% What the heck IS THIS ABOUT 'they clamored' .... Seriously .... !!! I worked today on my feet for near 5 hours. Almost a record. I do NOT sit down even though I need to - because it is so near impossible to get back up and out of the chair should I take a ten minute break. I then am so self-conscious if I take a break -- because I walk with these little stiff steps after I get to a stand again.... while trying to conceal how badly this upsets me and fake my way to a healthy 20 year old person's gait. So I just quit taking breaks... at first I HAD to every hour, then every two hours -- Now I work the four without a break.

When I drive home....and then try to get out of the car???? It's even worse than at the restaurant. It's a Parkinson's style gait -- and so miserable. Sure I can take pain pills and then lie down for an hour or so - and then I'll recover -- from pain and stiffness and sometimes lowish blood pressures...but my gosh this is NOT normal - yet no definitive answer arises from some of the brightest doctors I've had the pleasure to meet.

I guess it could be the Hypermobility Syndrome maybe ... but I question that. Do you have joint hypermobility too? I question so many things as I know you do too. In order for me to keep working at losing weight I have to walk - and as you - it beats me up pretty bad. So much so that my primary told me that some people are just not designed to do a lot physically. I hear her - but I know I must walk or if I don't I'll only deteriorate more. So I try to do this. Though lately I feel just too darn tired....that's probably from some med changes. And it feels like sharks are gnawing on my feet from the SFN.

Do the doctors know that your muscles are actually atrophy-ing and getting smaller? That seems so remarkable like they MUST find a suitable cause when it's that severe to cause loss of muscle mass. Have you revisited the lab test for Myasthenia Gravis lately to see if you are now more definitively in the yes or no category?

Blessings your way!

Okay - you all do have some good points to consider. One I understand is to maybe understand that I interpreted the comment negatively and defensively when perhaps it was his odd-ish way to say give things more time. Thanks for the caring comments everyone!

I also see that momdi you endured much worse - gosh in regards to one of your own children -- good grief to read what you wrote was maddening..... Obsessive - wow... ridiculous For most of my career I worked in pediatrics -- if I heard a doc treat a mom/child duo in such a way that would have been written up so fast that doc's head would spin! If they would spend even ten minutes in that parents shoes with a sick child with a rare disease....well they would never fathom such an attitude.

Yes Issie I agree I am not a 'majority' person because just the hyperadrenergic part of this alone - means my blood pressure may not respond to meds in a way that's predictable -- for instance just getting out of bed in the a.m. when your meds have worn off - and the adrenalin surge just getting upright -- then having pain etc... well it's higher than the average Joe's normal hypertensive morning 'high' most likely. Blood pooling when standing - and heck I would have never taken a standing job except for the fact the only thing I know how to do is be a cook aside from nursing.....

Hi nmorgan -- I'd have to agree mine are not stroke high -- well at least I don't think so .... more like the 150's over the low 100's for my daily highs. But it's been like this for a long time ... well since January - that's when I went from fairly well controlled on 2 meds to crazy shifts and bounding fast heart rates, lots of palpitations etc... Heck I can't fathom what ever shifted to have things rather 'suddenly' get so much worse...with b/p control. Then when the beta blockers were added - it's been a never ending battle since. I do thank you for writing!

I probably over-reacted. I think beta-blockers make me feel like crap to begin with -- probably the abrupt stopping of another med didn't help things.

Now the fallout ... the doctor that I 'whined' too about being treated like some kind of Kook or nut case........I was told is going to call that very doctor who upset me and the two of them are going to put their heads together & let me know what's up. Great I thought - now what have I done.. Oh well! I suggested to his nurse that they just put me on Clonidine and my pain management doc does think it would be a good fit too...

I'm sorry for being so thin-skinned & irritable -- I feel foolish for letting that get the best of me - I need to think before I talk and rant...

I made an appt. with Dr. Francomano - the EDS expert in Baltimore..... to have her perhaps shed some light as to the Hypermobility Syndrome diagnosis and how it may be related to my weird experience s/p knee replacements when all of this stuff started happening. She would be the last rock I have to turn over to get more information -- if I can see Dr. Brad Tinkle in Cincinnati earlier than she in December than it will be him. After that puzzle piece is explained and snapped in - I will be out of respectable insurance and quite through with this seeking, seeking, seeking.... I've read up to 80% of EDS Hypermobility Syndrome patients have issues with blood pressure and tachycardia ... though thus far neuro thinks mine isn't related to this......we'll see I guess.

I hate when this happens..... As a nurse I've heard doctors do this ever so rarely when a patient is driving them crazy about their blood pressure issues. I always cringed when they did it. It goes like this....The patient reports their worrisome blood pressure & the doc says in response, 'I order you to not take your blood pressure but twice a week'.

Yikes it happened to me LOL.... But I'm innocent. I was told to call if my new b/p med regimen was problematic. It was. I called. The doc made a med adjustment and ordered me to call and see how that change did with me after the Labor Day weekend. I make the change. I call to report that the change is not helping - in fact I am headachey almost daily and my b/p is still labile and I am still very symptomatic when it's high with headache - when it's low - feeling as if I must lie down.

I was curious if that was d/t the stopping of a med I'd been on a long time or just that the new meds aren't working as desired.

The nurse calls back and says the doctor says to stop taking your blood pressure except twice a week.

I was furious and called another of my physicians to report what I was told & that it was 100% not okay with me to have a patient with symptoms in the midst of tedious med adjustments not feeling well and be told to in essence ignore the way you feel and quit taking your blood pressure.

I would absolutely delight in tossing my b/p cuff in the trash if it weren't for feeling so crappy and it being all over the map to match how I feel --

I got so angry I almost did throw it in the trash....... Along with all the medications as well...... Would I be any worse off for doing that? Probably not - which is maybe why he said what he said to begin with.....

I'm getting more thin skinned these days it seems....

Could we all be related ;-) ??? Makes me want to start a group home for this leg situation ~ that way I'd be understood by at least some very nice people! All the furniture would be super cool and super elevated - as everything else, grab bars to hang on to - and for really bad days maybe a couple of 'real' bars just to toss one back and say once again, "nowwhat!" Wow I had no idea so many of you had this as well!!!

I had the arm weakness for about a month - I couldn't hold onto a glass of liquids or it would spill, pots and pans were too heavy and I dropped everything I picked up it seemed... The diagnostics for that were limited to a neck MRI - and it did show severe cervical stenosis on the right and left at C3,4,5 & 6. But I couldn't afford the epidural injections they wanted to give to reduce nerve swelling in the neck - and truthfully that whole idea scared me to death. My arms at that time felt too heavy to hold just their weight. I wanted a sling for each of my arms just to walk. However the good news is for whatever reason those symptoms graudually went away and now I don't have them at all. That was the weirdest and scariest thing to deal with! But it truly only lasted about a month...or a tiny bit more perhaps.

I most assuredly have leg weakness - but my case has so many confounding elements I don't really know from where it stems. There's muscle insufficiency in my internal and external hip rotators....that for me means that stooping, bending, crouching, pulling the side of the bed to turn in bed, using a chair to peek into cupboards or the refrigerator are common very frustrating issues. I cannot get up out of any seat of normal height without relying on my arms.

This may be due in part to damage done during the bilat. hip replacements. There is also chronic S1, L5 radiculopathy on emg - yet I don't particularly know how this finding impacts my symptoms or functioning. There are also two knee replacements in the picture.

Additionally there is the hypermobility syndrome aka ehlers-danlos type 3 tossed in there and small fiber neuropathy.

What I can do is walk. And I walk as many miles a week that I can muster to keep being able to walk. I seem to lose any gains in fitness rapidly so must use my legs about daily in some fitness walking endeavor. This is a vicious cycle with pain control though - yuck.

Just a few months back they were trying to rule out all the normal causes such as MS, myasthenia gravis and those types of things. All of it is negative.

It is for me my biggest issue and torment. For two years I've had a buckling right knee in addition to the leg weakness issues and clinicians would constantly tell me to strengthen my quads etc.... I've had a solid two years of physical therapy but it does not improve the weakness - so this last time a doctor told me to strengthen my legs I broke down and cried. Which bought me a visit to yet another specialist - who agreed my legs ARE strong - and that's why I haven't fallen when the right knee buckles.

So how can you be strong .... yet weak at the same time? Talk about going crazy. In the morning I literally teeter around -- grasping all furniture and walls to be able to 'get going' -- it's pretty sad and to me quite dramatic to have to move like this at age 53 yet nothing definitive is wrong - well not one certain thing - more likely a bunch of little things....

I need cushions and seat elevation on toilets etc... on all surfaces. They tell me to not push with my arms because I am worsening my severe shoulder arthritis & rotator cuff issues .... but I have to use them -- so therein lies my wanting to jump off a cliff when I listen to all these doctors.

Then add the whole orthostatic issues and vasomotor instabiltiy -- while not labeled pots - I do much of the same treatment plan as many of you....I am on the hyperadrenergic end of all of these symptoms

Yes it does feel like to me that it's like trudgeing through quicksand or some such thing......like my legs weigh an absolute ton. That's why I am working fast and furious at weight loss ..... to help it maybe be easier to move ... though it doesn't feel like my weight is contributory to the leg heaviness at all.

Anyway - I would really like to know from your experiences which component of a dysautonomia picture would come into play in this leg weakness -- to maybe give me some clarity as well

Thanks

Hello to nowwhat,caterpilly,Maxine and all who may have to have a colonoscopy or sigmoidoscopy some day.

Here are some of the things reported by radiologists. I think that at least some must be important enough to follow up on yet no doctor has said a thing to me. As far as I could tell, there was no mention of any type of relazant used.

Scan of abdomen and pelvis without contrast. 2009 (100 ml Omnipaque 300 was administered intravenously....I don't remember anything given intravenously. What is this?

1) There is a zone of the distal sigmoid colon where there is a combination of mural thickening, diverticulosis and mild adjacent mural thickening. The features are probably due to localized diverticular although the lumen itself is difficult to appreciate. *(What in the world can this mean?)*

2) There are several mildly dilated loops of small bowel but they are in skip areas and there is no significant thickening or other abnormality of these loops.

3) Probable focal diverticulitis in the sigmoid colon.

4) Most likely mild reactive ileus.

5) Neoplasm in the sigmoid colon cannot be excluded with absolute certainty,but is not suspected.

CT Colonography 2009 ( 100 ml Omnipaque 300 was administered intravenoiusly.) I'm guessing that this was a type of relazant??)

1) There was incomplete distension of the sigmoid colon.

2) Multiple cortical cysts in both kidneys.

3) Multiple Small amount of pericardial fluid.

I guess all I can ask is:"What if any of these conditions would cause severe pain"? I've decided to ask to delay the procedure set for Oct 5 and ask to speak with an an anaesthesiologist and request that he/she be present to monitor 'everything'.

I'm not allowed to read or get a copy of the recent CT colonorraphy so will have to write to the radiologist to send me a copy. I don't know about other countries but in Canada the reports 'belong' to whoever writes them and we have request a copy from them.

I'm still having doubts but if I can speak to the anaethesiologist I may feel better about a sigmoidoscopy.

Mary P

Well all I know is that radiologists and doctors always have 'go-arounds' and disagreement ... The MD's get ticked off because the radiologists are supposed to be "shadow-readers" only and are NOT to diagnose.......Yet they do label things and write what they 'think' - through the use of their protocols etc... Then we patients get ahold of the results - get panicky and call the MD and demand to know what the radiologist wrote and why ... To which the MD is standing there at the view box staring intently at the film saying, 'I don't see it. I just don't get it. I have no idea what he's talking about'.... And that's how it's been forever LOL.... So when I see MD's dismiss my studies ... and I ask them why -- they will give me the above speech if they are honest and say that it is very irritating to have them step out of the shadow-reader role when they have no idea about the patient or anything else... sigh.

Do not take us lay peoples advice over and above a good clinicians advice - that's the only thing I don't want to have you do.... If you delay treatment because you would do it anyway ... because you must have a few things in order first that's okay. But if you are backing away when it's only our internet forum talk - be careful...I don't want you to delay dx. and tx. if it's important not to....does that make sense?

In light of what could be painful in the above? I have the extensive diverticulosis in the entire colon - but I have that hypermobility syndrome aka EDS-HM in some circles - and it really doesn't hurt. However diverticulitis does often hurt - and usually pretty severely. My best guess for the reason for the follow up is to make sure that the thickening and such is not related to a cancer type process - an ileus probably is things got kind of slowed or shut down maybe? Sounds like they couldn't see the lumen (inside wall of the intestine) perfectly as they'd hoped. This can be for any number of reasons - ) Dunno for sure but Omnipaque sounds like a contrast or dye.... Yet just before that it says without contrast - which is weird - maybe just a typo. Some contrasts you drink - if you drank something maybe a typo? Anyway this is for the experts to deal with .... so blessings as you get the test done with safety and minimal discomfort. You may have been inflamed at the time of your last studies -- and that could have been the painful part ... Hopefully you are doing much better now :-)

Sorry I don't have any experience with that particular drug - nor do I have POTS ... BUT I do have experience with trying new medications that are used for off label purposes or purposes other than their originally intended purpose. You are very smart to post and express your concerns imho. It seems these days that we need to be pro-active in our decisions about what we are going to put into our bodies - because every medicine comes with a cost. Be it having the body work to eliminate it -- the financial drain, common and uncommon side effects etc. Not the least of which are these drugs are meant or designed originally to have an effect on your mood or dispostion -- so while it may be used for POTS - it is going to effect your brain and your view of the world perhaps just because it is doing what it was designed to do. Not every body is going to work well with all the meds suggested - some will cause prohibitory side effects like weight gain or insomnia ... who knows there's always a boat load of 'small print' as you know. The biggest concern that many people overlook is what is it going to cost them in terms of 'going off the medication' - Usually the talk is about starting it and it's neglected to tell you about the long tedious weaning process for many of the medications of this nature. The side effects of quitting can be horrendous if taken a long time and you quit - without a doctors blessing or even with a doctors blessing -- some are more notorious than others.

Now that that speech is overwith -- If this drug is helpful for POTS patients - these folks here I'm sure will help as they can to share their experiences. If it were me I'd want to know: What symptoms specifically is this aimed to treat? How long will it take before I notice relief? How long will I need to be on it? How difficult is it to discontinue this medication? What side effects are most common and how long do they last?

It may be that it's a perfect fit for your set of symptoms - if you have a wise doctor that you trust and you are in need of the helps the drug is purported to help - then give it a go........& let us know how it's working for you. I wouldn't 'worry' worry about starting it if you trust your doctor and have a good idea it may help....the worst situation would be you are out some money or some samples - and have to re-think again another tactic .... Best of luck - hope it works out well for you!

Hi -- Don't know for sure ... but in my experience with just 2 different beta blockers quite recently - it takes a bit of time to figure out just what they are going to do for the long haul. Meaning for me it took about a week to get a feel for whether or not it was going to be a good idea. I'm still processing what's good and what's not. Metoprolol lowered my HR from low 100's to the high 60's - but didn't lower my avg. daily b/p and it needed lowering. I switched to Bystolic. That one definitely keeps my pulse in the high 50's and low 60's - & the blood pressure is being tamed....sometimes a bit too much with some dips too low.

I'd be interested to know why your b/p is higher today too. I wouldn't call that 'normal' I would call that 'high'. More and more they are suggesting to have your avg. b/p be less than the old 140/90 rule.....

Had you been checking it at least say weekly for a few months or so? If so and it's been in the low 100's/70's.........then this is a definite change. On the other hand if you haven't checked it in say 6 mos. or so because it's always been fine I suppose there's a small chance that you've been creeping up gradually and hadn't noticed it till you took it today - meaning it could be without anything to do with the med - just getting higher overall.

Could just be a random high reading d/t stress from a new medicine too maybe? I guess I'd track it for a bit just to see what the trend turns out to be...

Then again if you have orthostatic b/p issues or vasomotor instability - perhaps you are fluctuating more than you knew? I often get too many high readings that elicit headaches and too many low readings that have me need to lie down.....but I was like that before the beta blocker so it's probably just my weird body - doc thinks related to a bit of an abrupt rise in catecholamines when I change positions from sitting to standing. And the lows from pooling that can happen from small fiber neuropathy.

But yes I would think that that particular med would have at least a stable b/p if not a bit of lowering in your b/p - and not a rise. So again it may be not related to the medication at all.... It can be so so tricky to get the meds right for sure.... good luck to you!

Hi friends!

It wouldn't be the first time you've helped me!

I'm trying really hard to think of anything that I could possibly be tested for before they send me away. again. like everyone else.

Basically, I'm being evaluated at the Mayo Clinic in Rochester by a neurologist. He is very sweet. Yesterday I went in to see him to follow up on my last two days of appointments and he said that he "gives up" and they can't figure it out.

The reason I wanted to go there was not really because of POTS stuff in my life, which is pretty clear, like fatigue and fast heart rate when standing or doing anything and passing out and headaches and all that just everyday. If it was just that I would buy the take a different beta blocker keep doing the salt/water/bed raising/compression stocking typical treatment and pray it gets better. But it's not, and I don't know what to do now...

The problem that I wanted to address is these weird things that keep happening. I was wondering if you would help me think of ideas so I can help him help me. It was my impression that he would so these things if I asked him to. He was a very nice doctor. He even told me that just because he didn't know didn't mean I was crazy! But I don't know anything about medical stuff and I know you guys know. Will you help me brainstorm?

Okay, these are the problems I want to clear up- sometimes (about six times in this year so far) I have these strange attacks. I have ridiculous chest pain so I wait for it to go away (sometimes it does) but then I get a headache like an aneurysm and I lay there in pain until for some reason I get really confused and I don't know what's going on, but then I get all sweaty and gross and I can't tell anyone what's wrong except that (I'm tired and my head hurts and my heart hurts. So naturally, this scares anyone who is with me and they take me to the ER and by then I'm usually just tired and I am aware, but I get really dizzy still when I walk and I always set off the tachycardia alarm on the heart monitor. Then they tell me I'm insane and to go to a psychologist.

So I did! And she agreed with me that it wasn't mental and I also went to a counselor who said the same thing. My roommate won't live with me anymore because she's scared to come back to our room and find that I'm dead. I'm scared of that too. But really, what can I do? At some point, something must be wrong and I want help, but now I just cry by myself until I am unconscious because I don't know how to manage it. Even at night I get terrible tachycardia and all these problems occur when I'm already laying down.

Some other things that really bother me is that I used to weigh 130 and now I weigh 105. None of my clothes fit and it drives me crazy! I have my period almost as much as I don't, even though I'm using the same birth control that has worked for five years! It just stopped being able to control my menstrual cycle and I get it all the time, with no pattern or order. I bruise like crazy ever since this started too.

So far, I had a head guy say it's tension headaches, the pots guy says do the regular stuff, it's not epilepsy, my MRI showed an enlarged pituitary gland, but they said it's fine, they never commented on my 24 hour urine test, so I guess that's all good, I still have an endocrine test left, but the doctor said he think that will be fine, and now they just say what everyone else says- we tried everything, we just don't know.

I can't go back to school like this. It's not fair to the ones who feel like I will die at any minute, including myself. But I also can't work because it makes me too tired. But I want to get my degree! I want to live my life!! I don't want to just give up like this! I can't just give up!

So that's why I need your help. Is there anything you can think of that I can do? Thank you all so much!

I don't know if I can help but I sure can pray for the best possible outcome for you.... I suppose I would tease out each item mentioned and ask for the best management for it.

So for one issue -- let's take the random monthly periods that are a change for you. This is in the realm of gynecology. It is important alone - as it's a change for you. Yes women's cycles do change in a lifetime - but changes that are life disrupting require investigation. Additionally you think about how that would affect things like your hemoglobin level ie poss. anemia. Hormones can be responsible as the medications such as birth control - a very learned gynecologist would be helpful to see if they can connect the dots in any of this for you

Next I'd think about a blood condition. Or a condition that effects the blood. So if you are bruising much more than normal - what could be the cause. Clotting issues (can be d/t some meds), or leaky vessels perhaps such as in a collagen disorder. Lot's of bruising would have you look into the causes - and then beyond that - are you possibly injuring yourself more than is likely for a person - and why would that be that you would suddenly get 'clumsy' if the bruising is from trauma like a normal bruise. Maybe the period situation with bleeding and the excess bruising are connected to the same cause...

Then my thoughts go to the emotional component of this - which can be hormonal perhaps (as can be the periods) -- also from inadequate pain control. It's normal and healthy and expected to have crying jags -- when you can't seem to break through with a rhyme or reason for feeling so lousy in sudden fashion off and on like that .... but if the crying jags in and of themselves are excessive - then perhaps there is a physiologic basis for the labile emotions.... To me you sound like a real trooper having a tough go of it lately... Could there be a true biological/physiological reason for this...I don't know...

Having a change in mental status - with confusion as you describe in conjunction with a headache does need to be thoroughly investigated -- you are on the money with wanting answers for sure. A tension headache in my experience does not cause confusion. Confusion -- that symptom alone needs answers - Dizziness while walking ... that needs investigation because confusion and dizziness can not only harm you if you should fall or heaven forbid get in an accident.... it could harm others if you were driving ... or if you fell while holding a child etc... Did you have the EEG to rule out siezure disorders of all kinds? I would definitely press for a sleep study if you have poor quality sleep or insomnia =-> because there they can monitor your EEG, your movement while asleep, your oxygen saturation levels, your type and style of breathing, snoring - many many things. But if you are there - and this makes sense with your symptom pattern I'd request it. Bad sleep can worsen everything while awake and can cause health problems if left untreated.

Your weight loss -- doesn't mention if it was intentional or not and over how long a period of time - and whether it's the first time this has happened or if it happens periodically these shifts in weight....but to me it is significant if it's rather new, rapid, and no underlying cause is identified yet. Have you had a glucose tolerance test?

You mentioned you can't tell anyone whats going on ... if that's because of confusion, or because you actually are 'unable' to speak or get the words out because of a brain thing - you are again right in holding the line in seeking answers there or somewhere else... Being unable to speak warrants serious attention... If you can't speak because you are worried about waking someone up etc... I guess that's a different thing.

I know the others here are so much more knowledgeable about POTS - I do not have that diagnosis -- so I pray the others can help with their insights ... Keep calm as you can and keep focused....this isn't the end of the line - the Mayo Clinic ... but it's definitely a step in the right direction as anything you can do to help you help yourself is progress. Think about what it'll be like to not have them available to ask questions and maybe that will help you target the biggest questions. Such as.... 'while I understand my enlarged pituitary gland is not cause for concern at this time... I wonder about it doctor. does this mean it is growing and I need periodic monitoring to see if it's getting larger? what symptoms would an enlarged pituitary gland cause if it were to be problematic?' So in addition to your overall big picture questions ... grab the things that bug you the most and ask them.....specifically.....how you should behave when it happens again.

Make them walk in your shoes... 'okay so I'm walking, I'm at the store, I get gripping chest pain. Normally I would drive home and lie down...is this what I should do? When I lie down then I get this severe headache....Normally I would take a pain pill and lie still as I can -- is that what I should do? Then I make sure someone knows I am suffering this way because I am frightened .... is this a good idea to have someone sit with me till it goes away? Does that person need to observe my confusion and inability to speak and then once again drive me to the ER? You see doctor I want to handle these symptoms intelligently as I can -- and think it out ahead of time -- because they are bizarre and very frightening as they occur. When I get all diaphoretic and sweaty and it's pouring off of me I wonder to myself - gosh no one else does this...what could be the cause? So should I stop wondering and just mop off the sweat?'

I don't like to be this pointed in my appointments - BUT I DO IT ANYWAY.... To make sure I'm heard accurately and understood acurately. Good communication is key ... Blessings to you!

I'm sorry you had such a kick in the teeth day with symptoms...... I had a rant myself today at the pain management doctors office... Kinda went like this:

Me:

I have turned over every freaking rock there is, I have exercised, I have eaten right, I have lost weight, I have taken my meds, I have a part time job, I have been worked up by 3 major hitters in the medical world - and tons of the minor hitters, I have traveled time zones, had every lab and scan and film and test -- and the bottom line is WWWWWWWWHhhhhhhhhhhaaaaaaaaT??????????????????????

WHAT the heck is there left to do!!!!!!!!???????????? I WANT TO FEEEEEEEEEEEL BETTTERRRR now!

HIM:

He steps back draws in an exagerrated breath and says, 'NO! REALLY? Now that's unusual!!' 'REALLY? YOU WANT TO FEEL BETTER? REALLY? NOW?'

Anyway just the way he said it made me bust out laughing ... maybe it was the stress but I really started cracking up -- and that's just exactly why he said it that way I guess...... To make me laugh and lighten up and give me a broader yet perspective....& validate me etc...

He's a great man and physician who knows what I've been through seeking answers for the last couple of years -- he's done more good for me than many doctors because he listens.... he cares..... he doesn't get all weird on you because you hurt or cry.... Just a decent man in my regard who has been there....

But back to you --- sorry about your frustration. Sometimes things do just mount up and it's healthy to give it a good scream............ Hang in there -- better days ahead.... If we were neighbors I'd shop for you in a heartbeat..... I don't get chest pains & it must be very hard - I'd love to help.

I hope you can stick with your current doctor or that they can stick with you - till you can get a grip on how to best handle your symptoms.... I too began with Metoprolol - 25mg...it was then upped to 50mg -- these are lowish doses for sure. It was for a baseline sinus tach with short runs of a PAT type SVT. Additionally it was to treat essential hypertension that is labile if not orthostatic hypertension.

What suddenly had my heart rate in the 60's (which admittedly is weird when you have been in the hundreds most your life lol) - was the doctor switching the metoprolol to Bystolic which is a newer beta blocker that metoprolol...dunno if you've ever been on that one. But even when I stopped it for awhile because my b/p went too low - my heart rate reset itself and now is always in the 60's -- too weird!

Now I'm back on it though -- with a small amt. of diuretic. I'm still crazy labile up and down and so the next med to be tried will be clonidine. Only at night to start and only a very low dose. I tend to react pretty sharply to these kinds of meds. So I probably won't be on the Bystolic or diuretic much longer...

It is something I've had to resign myself to - though I dislike and resist the idea -- is that tinkering with meds for my symptoms is something that may be ongoing the rest of my life if I continue with this orthostatic intolerance -- so the crucial part for me is finding a doctor that is willing to walk the walk with you and not get frustrated. Today I had a bad interaction with a blood pressure specialist --- in that he was tweaking my meds last week -- this week I called to tell him how my blood pressure responded (more severe lability with bad headaches and dizziness) - and he actually told the nurse to tell me to only take my blood pressure twice a week.

Wow was I angry -- here they go manipulating medications -- ask for a follow up call -- I make the follow up call because of symptoms -- and get told THAT!!!! So I called my other doctors quite disturbed and told them what this other guy said and that it was NOT okay with me. Sheeeesh........ Do you really think I'd check my blood pressure if I had no symptoms, no history of issues, etc... NO - I wouldn't ever check it. It's not a normal thing to do in a day -- but when you are ready to pass out and it's 80/49 only to have it 164/104 a couple hours later -- someone needs to help.... not harm.... but help!

So hang in there and as I started this out with - I sure hope this doctor will walk the walk with you till you feel better!

For two years now since all of this stuff came on .... and prior to that for five years d/t severe arthritis -- I have been on a 'hard-to-admit' decline in almost all activities of daily living. Because always something has to take a hit.

So if once or twice a month I try to do something social - well then I'll bake and 'dress-up' and that's all she wrote. I'm tapped out for a couple days.

If I work on exercise by taking long walks - then the housework doesn't get done. If I work on housework then the walks and the rest doesn't happen & I take a dive.

If I work at my job (4 hours a day about two days a week now) - I will shower and get ready - but after my first month at the job - I quit the newly donned make-up. I'm the old lady there compared to all the amazing youthful healthy ones - so why bother I think. Cuz then you have to take it all off and it's like, "I put makeup on for this?"

Since I began to sweat for the first time ever noticeably I've switched to Nike, Avia, Adidas or any kind of wicking athletic wear - so you don't see the sweat. That's my shopping outfit - with tennis shoes.

I have about 3 skirts or so I can put on to dress up - but I still wear jeans to church.

I have a very limited social life because I live in an area that's loaded with the elderly and while I'm approaching advanced age I am certainly not there yet - so few opportunities in my rural area to meet people my age.......

For the once a month social outing I do get a bit dressy (which is california casual - not dressy lol) -- put on makeup -- get horribly exhausted.......and have been known to toss down a quick glass of wine just to nudge me out the door - and I don't even like wine much.

Home loungewear is everyday wear morning till night if I have no doctors appointments - fleece pj tops and bottoms from Lands End that can be worn to the mail box and back.

Just keeping up with tidying the kitchen, the mail, the laundry, the bathroom - is over the top active and I need to lie down at least once a day for an hour or so - like a baby trying to nap - though I don't sleep.

Thank goodness for my job that I found. If it weren't for that I would be a total recluse -- it's been a very very hard past seven years -- I hope that by continuing to keep up with diet and exercise I will feel better and be inspired to get some new clothing and force myself into new situations...

I was going to jumpstart that by moving to AZ from CA - but the prospect ... you guessed it.... is just exhausting me!

I was raised to dress nicely, always have on makeup, have your home clean, your affairs in order and essentially be the bell of the ball -- wow..... Now I'm just thankful to not be on a walker any longer! But I'm walking like crazy because I'm afraid if I don't -- I'll just go down hill even worse - so everything suffers when I take time to walk....as you know activity can be a killer (even though it's supposed to be good for you) I'm 53.

I suspect it was 'maybe' one of those semantics issues - and not something to truly get hung up on - & I bet they thought you wouldn't get hung up on it - but they forget we cling to every word trying to grasp, formulate coherent thought, process and then accept or reject and then try to speak intelligently to their idea - all while under enormous stressors. So I don't think I would get stuck there - but rather move beyond that annoying part of your conversation. I bet much more good was done that the unpleasantness of that. I only say that because as I read my many page Mayo workup papers - sometimes in reading it - I take things in a defensive wrong way ... only to suddenly remember my responsibility to not immediately judge - but let things set awhile to digest. Then I learn and process more - and reread - and get an entirely different take on the phrase or statement.

I do though admit you need to 100% keep focused on your goals and reasons for going. Hand write each and every point that brought you to your visit. If it's a list of questions, or a list of ideas, or a list of symptoms - whatever it is have it in writing with you for your next appointment. At the wrap up visit go down all the bullets of your concern - reiterate what you understood the doctor to say about it - what you are to do - & then express your feedback on his/her instruction. Such as...

While at home I've tried to learn what I could about what could possibly be causing _____ in the context of a dysautonomia type health issue (as this was our best guess). Now I understand that you believe that ______ is truly not at all in light of POTS causation (and the realm of what people endure day to day with it) -- but for us at home we notice it kind of comes on when ______ - & hence we guessed it to be related. Since it's NOT related -- what then perhaps could be causing it? WHILE we are here - I need to have some clarity on this - so which discipline can you suggest we add to our itinerary - so we can gather more information about this?

I would gently announce you brought your written concerns and ask he indulge you before you entertain leaving Mayo - with a review of what you've learned and what you are to do about it.

Then to clarify further - with your examples: So before all of this started I never experienced ____ but now that my symptom group has a name - this POTSyndrome..... I guess I assumed that my ___,____, ____ were part and parcel of it because your sympathetic nervous system regulates ____,____ and blank, right?

OR Dr. am I misunderstanding? Anyway after you learn and get your clarification - go over your plan for the future. By that I mean any and all prescriptions, any and all follow-up visits and the timing of such, any and all follow ups with other disciplines that were arranged - ex: do I call you or the specialist you referred me to about my _____ symptom.

In the end - even after a multi-thousand dollar work up lasting over 2 weeks..... The body (or mine anyway) ends up with the age old advice of eat healthy, lose weight, keep very hydrated, keep up with electrolyte solutions, wear compression stockings, and keep in touch. The keep in touch would be to report how this plan is working or not working. If it is not working - I have in writing which medication might be added to this regimine - so already I have a call in to discuss it. OVER and above what another discipline ordered because he is the main specialist for my symptom group.

But hammered out were a litany of other things uncovered like borderline diabetes, small fiber neuropathy, sleep apnea, labile htn, adrenergic surges with standing, some rheumatic things addressed, some musculoskeletal things addressed.......These issues were sieved through other specialists while there..... But nothing would be a automatic cure. If I as you had been doing all of these things perfectly at home for months even before my visit to Mayo -- then again I would super-kindly dig in my 'I'm confused here heels' and express wherein my confusion lie and ask how to begin to feel comfortable about the outcome of your Mayo trip - where you are being told to in essence keep up the good work with no new tactics to try. I find if you are very specific about what you need to know and why - you can work as a team to both of yours best satisfaction.

Also a tip is to go and get your records every couple of days down at the medical records office if you haven't already - they are clear and succinct and spell out in 'doctor speak' what their impression and plan are for you... You may view simply everything that way - and then can go into your appt. more confident you guys are on the same page!

Oh my goodness - that is priceless! Thanks so much for the laugh - great way to start the day :-)

I'm not exactly sure what I have or how to explain it right -- but some of the symptoms are pots-like ~ & I have to say I'd definitely keep focused on your dreams and on some goals that you set for yourself .... Because as odd as this crazy malady is in it's oncoming - I suspect it's just as odd or weird in it's out-going. You get educated the best you can, you get your clinicians on board to the best of your ability that are a wee bit knowledgeable ==> and then run with it.

By that I mean you do the meds, you re-think the meds, you do the things suggested by clinicians and by those on the forums as it applies to your situation - be it compression stockings, fluids, salt(s), certain exercises, certain postures, and you take very good care of yourself. You eat well, and give a good shot at resting well. And actually these are all the guidelines for healthy living even if you don't have a dysautonomia issue - when it comes to eating, keeping hydrated, sleeping as best you can, staying as active as you can muster.

Then by virtue of doing these things - treating yourself well and keeping a bit of a persevering attitude and filled with lots of hope - things most often do change ... Much of the time for the better. Be it your bodies chemistry at the time, the right mix of nutrients, the right sleep stages, the right fluid balance - whatever it is - things shift as you get to know what seems to click for you. Sure you have to be light on your feet - because out of nowhere you can get blindsided - but this time you are experienced and know that as sure as you are down - you can get better and do better again...likely just around the corner...

For me - one tablet of a beta blocker knocked my tachycardia right out the window! I'd have years in each of my adult decades when I would just 'run fast' as a baseline with some added PAT or SVT runs.... Well evidently my 'clock' reset itself to a normal heartrate just like that. Now the issue is blood pressure - any activity on my feet this week dumps it down the toilet so to speak ... then rest, then a headache and suddenly it's very high again -- several shifts like this in a day is a wretched way to 'feel' - like your body just has a mind of it's own irregardless of how you feel about it.....much like the pots-folks when their heart rate takes off like blazes with no rhyme or reason.

But these symptoms seem to ebb and flow as I read these forum posts by people - they write to pronounce a new victory and they write for encouragement when the page turns dim or sour....But the biggest thing I see is that nothing ever seems to stay the same. Either you uncover a new tactic to help symptoms, or the symptoms dissipate somewhat....or you get slammed to your knees and cry bitterly - but you don't stay there 'forever'...... You may never 'lose' the dysautonomia but you lose the all or nothing thinking about it...& begin to bend with it instead of fiercely fighting it.

So for me - whether it's possible to ever work again or not - I have no idea. I did try to return one year ago after a year off and ended up getting 'let go' because I couldn't meet the physical demands of the job. Heck just getting off a couch in a patients home I was drenched in sweat with a heart rate of 140 and my brain just wouldn't work - one of the most scariest times I've had...but they liked me and offered a desk job if they ever had one - since then I've done nothing but try to turn over every stone to find out what the heck it is that does this to me... So I just keep at the basics of exercise, eating better, sleeping better with a deep inside intention of getting back to work. If it doesn't work out that way = well at least I'll be at my fittest and healthiest to deal with the crazy illness and the rest of what life has to offer.

So I may be down - but definitely not out....& if at such time I ever do see that I cannot work as a permanent thing - you will absolutely find me volunteering if I'm not flat on my back in bed - cuz I'm a people person and I think I do worse in my health if I don't stay connected.... I actually do work right now but it's not at my occupation. It's a job where I work 4 hours per day about 2 to 4 days per week. I am handling it so so -- it does feel good to be part of a team for sure - but I miss my chosen profession...

Thanks Jana! Thanks Dianne!

Hmm...I do have an Aunt who lives in Tuscon - and interestingly her son (my cousin) & I haven't seen each other since we played together as kids a bazillion years ago - Yet I got a phone message from my dad that he is coming to visit on Thursday of this week -- so we'll reconnect and I can speak with him about how his mom has fared in Tuscon.....I think she loves it from what I remember!

Thanks so much for the tip on an internist in the Phoenix area too -- I'll call tomorrow and see if I can get an appt. to establish myself in his practice. Sounds like he may not take new patients as he's so gifted in being a physician....But I'll give it a try...I have the good insurance I think till the end of the year - then it's Medicare.

The neuro I see is Dr. Goodman... I think it's Wochas for the blood pressure (nephrology) and Butters for PM&R, and Mertz for rheumatology. I liked all of them honestly.

I could scream (but of course I won't LOL) when I think of the suffering endured at the hands of all these doctors and physical therapists etc...who had no idea what the heck was going on with me -- who had the attitude at times of 'she's a wimp' -- or worse 'it's all in her head' Two full years of me persevering no matter what they said and thought for answers .... & in the first visit of three.......THE FIRST VISIT - Dr. Goodman explained to me most likely what happened and why. BAM. Done deal.

How do you thank someone like that? Well in my crazy way I tried to thank him the best I could.... But gosh I'd offer to reshingle his roof, take out his trash, walk the dog, rake leaves, do dishes, shovel snow, clean bathrooms, do taxes, heck anything for him to know how extremely and utterly grateful I am :-) Just one of those amazing moments in time....

Thank you :-) For your thoughtful reply too! We have no guarantee of any future -- so yes let's hold on to the now and run with it.....or walk.....okay sit LOL! I notice if I 'live' today well - my tomorrow seems to be a bit better - because I have a better past -- wow does that make sense? Haha -- Yes looking back we can see how far we've come....since some darker days for sure. So time to celebrate life now - and dessert is a passion of mine as well as I will create and at times consume such treats - for me giving them is as good as eating them (almost). Other people, their judgements, their lack of concern or care - even family members or especially family members can be a huge source of 'yuck'.... But yet every single human being has trials of this nature I'd venture - that seem to come at times where you need the exact opposite...healing and support, encouragement and hope. And if they escape those pains well sure enough everyone has some sort of issue to deal with - life's just like that. What that has done for me is give me so much pleasure when I hear people behaving in loving ways just in seeing it is healing.....today I saw a woman in her 60's I'd guess trying to pay for her daughters very expensive medicine at the drug store....there were issues as it wasn't 'her' medicine but her daughters medicine bill - you should have seen her struggle and fight for the privelege to just 'pay' so her daughter wouldn't have to -- it was very moving to me to see that kind of love. So while I may not 'own' such experiences of love in my own life - I can sure thank God for any love I see around me. And as every person has the capacity to love - I will continue to do this...have concern and compassion for those around me. So that no person should feel as left out or rejected or lonely as we know life can be. I'd spend my life well to just ease one person's pain, make one person laugh.......bake someone the best chocolate chip cookie they've ever had!

Thank you -- while not having POTS - I sure do have issues with plummeting b/p's when standing on my feet for any longer period of time ... regulating fluids and medications, activities etc...can be really challenging - probably a big part of it is learning to have patience when trying to figure out what works best for you to avoid these big dips and the symptoms they cause - I appreciate you posting this ... it was helpful :-)