Beccapooh

Okay, so I finally got my "BLESSED" script for Beta Blockers from my "lovely" PA at that great appt. week before last.............then I went on vacation with my family. Oh boy. I was so excited for both occurences. I thought that the Beta Blockers would give me some sense of relief and that the vacation would do me good (we haven't been on one in 10 years!!!). Anyway, I had already posted (before I left) that I had taken the betas for a day or two and that I was about to crawl out of my skin. I got a few replies that said that the same thing happened to them, but that it only lasted about 4 days. I got that same number from a couple of different people, so I assumed (not a nice word is it??) that I would follow suit and after four days, I would be myself again!! Oh no.........no, no!!!! I'm a full psycho B*&%&H on this drug. I can't sleep. I mean, at all when I take it. Even with sleeping pills (namely Lunesta and Ambien and OTC Tylenol PM). I feel like I'm on speed the entire day and night. I had called the Cardio back (see previous posting by me for that lovely scenario) and see told me that this is impossible, period. Am I crazy? Am I bi-polar and don't know it? I've read that Betas can make bi-polar folks worse. But, my husband is bi-polar and we don't have any personality traits in common, I mean, NONE!! My half sister was DX bi-polar, but, we don't think that that was a true DX for her. She was a moody teenager and now, is quite level and hasn't needed any meds for years. My husband, however, is not fit for man nor beast if he misses even one dose of his meds. I really just need to know that maybe this is just another one of those ways that my body OVERREACTS to medication. I always seem to. I mean, that's why I'm doubly shocked that the sleeping pills didn't push my into unconciousness. Normally, I can take a Tylenol and feel sleepy. WHAT'S GOING ON WITH ME??? I've stopped taking them, for the time being. Which does kinda suck, because I was feeling better as far as the chest pain, palps and all that stuff goes. I just can't take that hyper alert, hyper witchy feeling anymore. My poor family!! I mean, I totally ruined our only vacation in ten years!!! Thanks for listening y'all.........I didn't mean to vent so long...........whew............I do feel better, as it goes!! Bec

I've got severe back pain on the right side and was just told, last week, that I have a kidney stone, too. I don't know the why's or how's of kidney stones or what they might have to do with POTS, but I've never had them before now!!! Bec

In my former life, I was an insurance agent and underwriter. Here in Colorado, it is ILLEGAL for an insurance company to "claim" pre-existing condition as long as you were contiously insured. Even that was with COBRA or with a group and then you switched to individual, it doesn't matter. As long as there wasn't a gap in coverage, you're fine......here in Colorado. Not being licensed in any other states, I can't be certain, but it would seem to me that that would be consistent across the states, no? Did you have a gap in coverage? I agree, with needing to show them a COI, however, again, here, there is no time "limit" or guideline that states you have to show it to your new insurance company by any set date. Of course, the hope is that, once things start coming up "unpaid", you'll have the drive and need to get them that COI quickly. I'm not sure, but you if you can't find your COI, you might be able to request a copy of it from the insurance company that you were with prior to all this mess!! Good luck and I'm so sorry. I do know how you feel. Mine isn't considered a pre-existing, but we have a huge deductible and out of pocket max that NOTHING seems to apply to!!! Geez.............. Bec

LukkyCharm24- I've only been (Cardiologist wise) to Aurora-Denver Cardiology, but, was referred there and to Dr. Eldridge specifically, by my Neurologist Dr. Shah. He and she treat a "real" POTS patient together. That's why I had hope that she'd be not only willing, but ABLE to treat me. Turns out, if it's not your standard straight forward 30 beats per minute POTS patient, she doesn't want anything to do with us!!! She didn't even know that there was any other type of Dysautonomia other than straight forward, true blue, POTS! I will see if that doc in the Springs takes my insurance. Thank you so much!!! This really could save my life!!! (((HUGS))) Bec

Has anyone read any of the Dysautonomia books out there? If so, were any of them any good? I was just on Amazon.com and found several, but all the reviews made me leary. Some were over the top like "this is the best book ever", while other said "that it was all fake and the author wasn't even a doctor". All of this about the same book!! ARGH!!! Just curious......... Bec

Okay, so my "wonderful" cardiologist has determined that I don't have POTS (because my heart rate only increased by 28 beats per minute and not 30......whatever). Anyway, so I've contacted my PCP and he's said that he'll go ahead and perfom whatever blood/urine tests I want, but, that in the end, he can't really DX or treat any form of Dysautonomia. Okay, I understand that. My question here is this, do I really have to go out of state to find a doc that can (will) DX and treat me? I can't even believe this. I live in a large suburban area (Denver, basically) and there isn't one single doctor in this entire area that knows anything about autonomic dysfunction? Can this be possible? Y'all keep saying to "find an autonomic specialist", but I don't know how to do that? I only have a limited amount of resources (as we all do). But, doubly so, since I've already paid a fortune to be DX with Myasthenia Gravis, which I don't think, now, that I've ever had!!! I don't know how to figure out who does and does NOT have a clue about this disease. I have to stay within my network of insurance, obviously, but, what do I do call every single Neurologist in the list? Every single Cardiologist? Nephrologist? Endocrinologist? Where do I start? I mean, I was lead astray by the claims that this last Cardiologist "knew about POTS" and was going to DX no matter what (her words, not mine)!! Basically, she didn't know anything, obviously, other then 30 beats per minute means POTS. Period. The idea of the expense to go out of state for another "maybe" DX is almost too much to bear. What if it comes back that I don't have THIS disease either? What tests should I have my doc here do to rule IN the Dysautonomia and VEDS (anyone with EDS please, I need your help, too!!!) Is it the 24 hour urine? The collagen blood test? The genetic collagen test (DNA)? The Catecholmine blood test? HELP!!! I'm so confused right now. I feel so defeated, so frustrated. I know, in my soul, that this is finally it!! This is what's been wrong with me, my whole life. It's an answer to prayer really, but, at every turn, I feel that I'm being pushed away!!! Any help here would be so appreciated!!! Bec

I still haven't had a chance to talk to the actual Cardio. As a matter of fact, the lovely PA that attacked me so viciously yesterday is the one who called me back. Even though I specifically said that I DID NOT WANT TO SPEAK TO HER!!! That's the whole point of my concern, I took the BB and it's what made me feel like I wanted to run around and made me feel all adrenally (is that even a word??? LOL). And if it's really supposed to be lowering my heart rate, then obviously there's a problem. Now, I'm terrified to take it again!!! Now, I know that even in the Hyper-adrenic version of Dysautonomia there are two sub types, congenital and secondary, but what are the two different tests? I had no idea that there would be separate tests for each. Isn't it just the plamsa and/or 24 urine to measure your level of that chemical (Catheclomine) or whatever it is?? I guess, what I need is a crash course in all this stuff, because I'm going to have to educate my Primary Care and Neurologist, because they're going to have to treat me (and obviously are going to want proof prior to any treatment) and they don't know s*%t about any of this. I always have been super sensitive to drugs, light, sound, heat, exercise, movement, on and on and on. I, think that it's the congenital type, but, then again I can't afford a DNA test to prove that you know? So, am I gonna be screwed? Will the 24 hour urine and or blood test not come out right for me, then? HELP!!!! I feel quite confused now. In addition to all this, I also believe that I have vascular EDS, which now I'm being told needs some sort of crazy genetic test, too. This all has to be a joke. Seriously. My poor husband and my family and friends and my pocket book can't take much more. Why is it that everyone else, seems to have someone in a nearby state (at least) that knows something about something.......but, NO, not here in Colorado!!! I'm feeling quite sorry for myself. I'm sorry. I'm just super upset that what I thought was going to be a for sure DX has now turned into this mess. The PA (of the Cardiologist) told me that the Cardio is only willing to treat my MVP, that's it. She doesn't even want to try to work me up for the Dysautonomia. I need to go back to my Neuro or see a Endocrinologist or something else, but she doesn't want to see me unless it's for my MVP, period. Nice, huh? I want to cry....................and sleep!!!!!!!!!! sniff, sniff Bec

Yeah, I've found that certain soaps help and others a big "no-no". That's trial and error I believe. But, no matter what, for me, it has to be an anti-bacterial type soap. So it makes me wonder if it's not some weird type of bacterial (???). Hey, any of us find that your deoderant just quit working, too? I know I had used Secret forever, my whole life really and then one day, POOF it just quit working. I had to use Suave Raspberry only (I found that info on the Hyster Sister's website) for about 2 years. Then one day, POOF, that one quit working and then I went back to Secret, but it has to be the Platinum one. Crazy.............I've just about given up on trying to figure out my own body!!! Bec

I have Raynaud's, too. But, see that whole adrenic connection is what I was thinking, too. Great..................the one thing that I thought might help me, is making me nuts!!! It's helped my vision get back to normal, but, as far as how I feel, I feel so irritable and edgy and mean and like anxious, anxious, anxious. My joints are killing me, too. ARGH!! I wish that I had the money to get see Dr. Grubb. Hey, anybody out there in Ohio willing to have a house guest, sight unseen?? LOL..............I'll be taking applications through the PM system! (Hey, I'm only half kidding!!) Bec PS - Could someone give me the link to the Dr. Grubb article that you were referring to? I would love to print it and take it into my doc!!! Thanks, in advance!!

Will it still "work" if I'm feeling better? I seem to be feeling somewhat better since my big time flare last summer. I guess I'm worried about yet another test coming back "normal" and having it be a false negative. Will it come back as a positive even if I'm not feeling total crap? Does anyone know? I would be crushed if it came back negative and was really, actually my problem, (which I believe that it is!!). I know that y'all aren't doctors, but, has anyone had this test when they were (somewhat and comparably) better than they were? OMG, does any of this make sense? I'm such a nut these days. What I'm trying to say is that I WAS so sick that I could hardly get out of bed and I couldn't speak, etc. Since, then, I've slowly regained some strength and have more energy (which is kinda funny, considering how many naps I take!!) and my point is this...........will the test still come back positive (if it is indeed meant to) even if I'm "BETTER"?? Bec

I know that it's only day one on the new med, but, everything that I've read about Toprol is that it should make me tired. Well, let me assure you that I'm far from tired. Quite the opposite. I had to take a sleeping pill last night (at about 2am) because I was so wired. I had taken the pill at about 8:30 because I wanted to make sure that this didn't happen (I seem to have a knack for having the "opposite" effect with meds) and I wanted to be prepared for a night of no sleep. Well about 10:30 I did fall asleep and I thought "Yippee!!" However, at about midnight I woke up wired. I could NOT sleep, I felt as though I needed to move, get up, move, get up, move around, just DO something. This is how I've felt when I've taken other drugs, but those reactions were more profound and bothersome. Of course, those drugs didn't bother me too much the first day either??? Then I went and looked up Toprol and it's generic form and it says to not take it if you have Asthma, Myasthenia Gravis, kidney disease and Raynaud's Syndrome. Well, I've all of those things (well, maybe not the MG, but, all the rest I have...............) Did my, friend, the wonderfully smart, brilliant *&%# of a PA give me the worst possible drug for me or not??? Shall I just wait and see??? Shall I switch my dose to the morning??? Any advice is much appreciated. Bec

Like y'all I never wanted to mention it and didn't really think that it was related, but, alas, maybe it is. I'm a super clean person, in my home and with my own body (as I'm sure we all are) so imagine my surprise when I went the bathroom about 2 years ago and smelled like I had shoved an onion in my panties?? I don't even eat onion!! I, however, was not the only person who could smell it. I went home (as I was working part time then) and I asked my husband to stand close to me and tell me what he smelled (I didn't want to sway his opinion) and he said "Wow, babe, did you have onion soup for lunch or what??" I cried. I went and change my panties and pants and then we left to go to a Christmas Carnival that was outside. It was cold (obviously) so I thought that it would be fine, because I thought that it was the sweat that was so stinky. Again, was I wrong or what??? About a hour after being there, I could smell the onion smell again. Perfect. I also get the rotting meat smell, but less often. And I've never kept a jounal to figure out it there's a link or any rhyme or reason for my stinkiness. I've had a complete hysterectomy so it's not like pre-period or anything like that. I wonder???? 1) Do none of us have a uterus? 2) Do we all have other adrenal symptoms? I know that I'm very susupicious of having the hyper-adregenic version of dysautonomia. How 'bout y'all?? Bec

And I forgot one thing...........Y'all are gonna love this one. I had told her about all the information that I've got from the web, ie. this forum and other sites about MVPS and Dysautonomia and she told me that she too "could go online and make herself fit into many categories, that didn't mean that she had any of the diseases!!!" I've had these symptoms since long before anyone had ever heard of the internet. To be honest, I've had tons of them since I was born, namely the extreme sensitivity to light and sound!!! I think that that was my favorite quote of hers, to be quite honest. Thanks everyone for being so supportive, I don't know what I'd do without y'all, truly!!! Hey, I do have a question, too. I just took my first dose of Toprol XL last night before I went to bed (as instructed by the Wicked Witch of the East) and I could NOT sleep. I feel better, like my blurred vision went away (which was so nice....I could actually see again!!) but when I went to lay down I felt like I just had to move. After the day that I had, my brain was tired, but it was like my body was ready dance or something. Is this common and will it go away? Am I nuts? (LOL) Or could this just be more support that I'm a hyper-adrenic person? (If felt somewhat like that.........like my dystonic reaction to Compazine, just not AS severe) Anyway, thanks again y'all!! Kisses and hugs to everyone!!! Bec

Well, I know that this isn't much help, but I can tell you what I CAN'T take. I can't take Compazine or Phenergan. Funny thing is that the reaction that I have and have had for over 20 years is called a Dystonic reaction. Funny, huh? Dystonia??? You don't say?? Now, I find out about a million years later that there's an entire disease called Dysautonomia. Imagine my surprise. Funny thing is that I get a lot of those same symptoms now, just on a daily basis (as if I had taken a dose of Compazine, but I didn't!!) Good luck on your search, I just know that those two drugs can be super bad for me. Has anyone else been told that they had Dystonic reactions PRIOR to being DX with Dysautonomia??? Just curious. (((HUGS)))) You poor little thing. Again, I assume that you already know this, but I've noticed that if I DON'T eat then I get super nauseated. I eat hard boiled eggs. They seem to fit the bill. Not too harsh on the belly, they're protein so they're slow to digest, gives me a little energy and gets rid of the nausea. Then once that overwhelming pukey feeling leaves I eat some soup or toast or something. Maybe it could help you, too? I don't know, but I sure would like to help you if I could...... Bec

Okay, so where to begin. I went to go see my Cardiologist today regarding my (supposed) DX of MVPS. Well, gee, I drove for the 45 minutes, burned a quarter of a tank of gas (no cheap matter these days) and paid my $30 copayment (for a specialist mind you) and only got to see her PA. Now, normally, this wouldn't be an issue (I suppose), however, the appointment was SUPPOSED to be to review my echo (actually look at it!!) and start me on a treatment plan. Well the PA walks in with a little plastic board with a picture of a heart on it, directs my attention to the Mitral Valve and says "This is were your prolapse is. Do you know what "prolapse" means?" I, of course, say yes and she continues with, "Okay, do you have anymore questions?" Ummm, wha??? We were done. (According to her, we were, I thought differently) That was it, the entire appointment?? So, I of course, said, "Yes, I do." I went on to explain about MVPS and that it was also called Dysautonomia, etc. I spent the next 45 minutes educating her and being told that I needed to see a Neurologist (even though I've been seeing a Neurologist off and on for 16 years now! ) because she thinks that I have MS and/or absence (spelling?) seizures. Okay, well, let's see, I've done about 27 MRI's (exaggeration) most with contrast even though I have a horrible reaction to it. I've also done the 48 hour EEG thing, where I wore the electodes on my head and freaked out all the neighborhood children. Nada. Well, except for the T2 lesions and an abnomality of the anterior horns, which was never followed up on at all. I was told hat I had six lesions and to have MS, I needed 9. Whatever. Anyway, suffices to say, I don't have MS or these weird "asbence" seizures. I have freakin' DYSAUTONOMIA you stupid *&%$@!!!! I have 18 years of records pointing in that direction. I asked her if she'd order me a 24 hour urine or the Cateclomine (however you spell it) test and a colagin (again spelling's off) test. I've got a sneaky feeling that I have Hyper adrenic Dysautonomia and Vascular EDS. These two tests will conclusively (kinda) tell me if I'm right or not. She told me no. She told me to go see a Rheumotologist and an Adrenal guy. Okay, well let's see I've been to every freakin' other "ologist" why not add two more, huh?? Or hey, maybe you could actually help me out and save me the time and money and just order the tests? Nope. Point blank. Then she went on to say that IF I did have an "adrenal" problem that that would explain my weight gain. What weight gain? I've been fat since I gave birth to my first child 8 1/2 years ago. I know that I'm fat. I've weighted within 6 lbs of the same weight for almost nine years. (Except for when I was pregnant with the second baby, of course!!). So, now, again, I'm being told that I'm ill because I'm fat. Okay. Whatever. Then she continues to say that if I'm not having absence seizures and since she "KNOWS THAT I DON'T HAVE POTS......" (even with a 28 beats per minute increase in HR) that I must be a very good actress!!! Okay, at this point, I want to hit her, but I think, no..........just wait, the wonderful, kind hearted cardiologist will come in any second and save me. She's getting ready to dismiss me without any drugs, nothing. So, I pretty much demand at least Beta Blockers, which she gave me "if it would make me happy." she said. Nice. Don't do me any favors, okay??!!! And as she leaves she tells me to get dressed. No EKG, no seeing my echo and no cardiologist. I'm thinking, okay, I'll get dressed and wait for my doc. So I waited for 20 minutes and then the nurse comes and knocks and the door to see if I'm okay. She says to me "we're ready to check you out now." Oh, really? When was I checked in, huh??? So I get my script for the Beta Blockers, something with T, I don't even remember right now, some XL thing that I'm to take a night and a standing order for antobiotics for when I have surgery, dental work, etc. So over the course of this appointment, I was told that MVPS doesn't exist (she'd never heard of it, so it must not be real, kinda thing), that I'm too fat to be sick, and that I'm a good actress!! Well, y'all say hello THE FAT ACTRESS. I'm going to go shoot myself now!!!!!!!!!!!! (Not really, but, I'm so upset I can't even see straight, no really, I can't see straight.................ARGH!!!) Bec

So............has ANYONE actually gotten SSDI with POTS (on this site, of course!). I have the following as my "medically documented" symptoms: 1 - Migraines 2 - Syncope and near syncope 3 - MVP 4 - Some Tachy some brady (basically and irritable heart beat) 5 - TIA like activity (unexplained) 6 - Seizures (again, not clearly explained) 7 - Panic attacks (??? ) 8 - Anxiety 9 - Blurred vision 10 - Muscle weakness 11 - Severe diarrhea (IBS) 12 - Random vomitting 13 - Daily fevers 14 - Depression 15 - Light and sound (high) sensitivity How in the world do I put these symptoms onto a list for SSI?? ARGH!!!! I'm so frustrated. I haven't been able to work for nearly two years now and we're about to go under financially. I can't find a job that will give me the flexibility to only work "when I feel up to it"?!!?? What do they (SSI) expcect us to do, huh??? Rebecca

Well, I've been symptomatic for years, but, just now (almost) DX. So, (of course) I've been on every anti-depressant and anti-anxiety med known to man, including Wellbutrin. I'm very sensitive to meds, as are a lot of folks on here, but I can tell you that Wellbutrin seemed to help SOME at the beginning of taking it, but within a short period of time, it made me very ANXIOUS! Most meds make me MORE ANXIOUS as opposed to less. Again, that's just me. Bec PS - I believe that I have the hyper-adrenal form of POTS, so that does make a difference, too. We adrenal folks seem to have the adrenaline in spades!!! Good luck on your journey and I hope that the med helps, you!!!

So, we don't HAVE to have one of the conditions listed then? I'm confused. Bec

I had already applied for SSDI when I was DX with Myasthenia, but now that that's in question and I've been DX (tenantively) with Dysautonomia, I tried to look back on the website (SSI), but don't find anything even remotely close to that type of a condition. What have the others here, that have applied for SSDI used as a "qualifying condition"? Do we have to break down all of our symptoms into categories, like IBS, Migraines, what?? I'm at a loss totally!!! Any info would help............. Bec PS - I've already done a search through the archives here, but I don't see that specific topic anywhere!!!

Yes, it is indeed Mitral Valve Prolapse Syndrome that I'm referring to. LOL, sorry for the confusion, but, I think that this is a good point.........if WE can get so confused and mixed up then no wonder the medical community has a problem. I know that most docs acknowlege MVP; as it is a structure problem. However, I read a few sites over the last couple of days and there was even some quack (sorry) running around telling folks that MVP doesn't even exist, even though you can see it and hear it on an echo!!! His point was that the heart is stretchy and those of us that have been DX with MVP are just lying funny on the table during our echo or what not!!! ARGH!!!! Thank you for pointing out that things in print are out dated, I guess, I wasn't really aware of that fact (to THAT degee, anyway!!). My cardio is the one that told me that I have the MVP with regurgitation and that there IS a syndrome out there that fits all my symptoms. She hasn't come out and said "Yes, Rebecca, you have MVPS!" My appointment with her to see my echo results, etc. is on Wednesday. She's in touch with Dr. Grubb often for another POTS patient that she has. My TTT's were both a hair short of being "OFFICIAL", at 28 and 27 beats per minute increase. Now, I have a confirmed MVP. I have all the symptoms of POTS and have had them for years, ie. documented syncope, "irritable" heart beats (via looping monitor), countless visits to every doctor under the sun and even more tests (that have ruled out many, many other possibilites). I guess, I'm jumping the gun (as usual) but I'm just so tired of being tired and I'm so scared of being told AGAIN that I'm fine!!!!! I'll let y'all know what she says on Wednesday I suppose. I'm really going to try and be straight forward and honest and assertive with her!!! I'm going to try to tell her everything that I tell y'all!! Thanks for everything!!!! Bec

Okay, so I've been to a few sites since I've been DX with MVPS (Mitral Valve Prolapse Syndrome). Here's what I've learned so far. 1) This is the same as Dysautonomia 2) Some people in the medical community don't think that it exists. Is this a joke? Has anyone else read these claims? Has anyone run into this in their medical community? Sorry, I'm just freaking out that I just DX with a disease that I'll never get treated for and even be considered real. So, basically, I'm a still a nutter and just a hypocondriac, right??? Any input would be most helpful!!! Rebecca

I, too, have had the ER trips in which I was given saline and sent home with the "dehydrated" DX. LOL....oh brother. I've also gone, sick as a dog, running a 103 fever for 23 days straight and not even given saline, and just sent home!!!!!!!! Even though I couldn't swallow or speak and came into the hospital having one of my seizure/spell/fit things. (Whatever the heck they are?? LOL) I wasn't even concious when I came him and they still sent me home with not so much as an IV!!!!!! I had no DX at the time and they really didn't seem interested in helping me find one. I had been quite ill for a month and gained 22lbs of water overnight, somehow??? (Still don't know what happened there. I looked as though I was nine months pregnant and I've had a hysterectomy!!!) The doctor told that that was impossible and sent me home. Period. I can't even count the number of times that I've been to the ER in the past 18 years (since my SX started) and I can't think of one time that I was treated with any respect at all. Even if I was there for a trauma, due to several severe car accidents that I've been in!!! Modern medicine.......HA..........what a joke??!!! I'm sorry that things went so poorly for you, but you are NOT alone!!! Rebecca

Is this the same as dysautonomia? I keep seeing that at the websites that I've visited!!! Yippee!! Am I officially DX with dysautonomia??? I'm going to see the Cardio next Wednesday, to start treatment. Is it weird that I feel some relief by this???? (Heavy Sigh) Rebecca

You poor little kitten! I'm going to ask my husband to type a reply to you, if you don't mind!! Yes, mood swings are a big part of this crappy disease!!! Good luck on your journey! Bec PS - Try to be patient. I'm sure that if she says that she loves you, then she does!!! ((((HUGS)))))

See, that's what I thought, too. I've had POTSy symptoms since I was 16......I'm now 34. Also, I'm not really worried about Shy-Drager at all.......it was something that I had thought about in moment and have since thought better of it!!! Thanks, though for keeping me grounded!!! I hear what you're saying about NOT getting a "bad" DX, but, to be quite honest, I NEED a DX at this point. I need to know that I'm not crazy, but, mainly I need some treatment!!!! I can't stay like this forever. I want my life back, at least to some degree. I know that there's no cure, but, that there is treatment. To date, the only treatments I've been given were for MG, which coincidentally are similar to the ones for POTS. I've taken Mestinon and IVIG treatments, along with steroids and immunosupressants. My Neuro has decided that I can't stay on the Mestinon forever, due to some ill effects on the body. Now if that gets taken away, I'll have no treatment at all!!! I will not be able to function without something, you know??? It's been years and years of me being ill and without a DX I do seem crazy, to some folks. Especially, some doctors. I think that I need to feel somewhat vendicated. As wrong as that sounds, it's true. I guess, if nothing else, I need to know WHAT I have because I have children. I need to know if something's wrong with me that I could have passed onto them, too. They're both girls and I know that POTS and just plain dysautonomia in general, if I'm not mistaken, is more prevailant in women. The journal idea is great, because as it is, I don't seem to see any pattern to my sypmtoms. I'm only afraid that I'll forget to do it, because my brain seems to be foggy and slippery these days. I can't remember anything anymore and it really scares me. I forget everything from minute to huge. Nothing is off limits for my mind to flush!!! And, thanks to everyone who has replied to me and been so supportive. It's been more valuable than I can ever express!!! Bec PS - I had my echo today, but of course I have not gotten any results yet!!! LOL