Beccapooh

Hey everyone, thank you for the kind words of wisdom and hope!!! I never did hear back from the cardiologist today. Bummer. I guess I'm holding out hope that she's trying to contact Dr. Grubb about me (oh, please, please, please...). She seemed like she really did want to get to the bottom of this for me. She also seemed like if it came back at a 27, 28 or 28 BPM increase that she might still treat me as if I have POTS (??? MAYBE???). At this point, I just wish that they'd try some of the other treatments. I clearly respond to Mestinon (although my Neuro just told me that he wants to remove me from it because it's not good to be on long term!!! This is the only drug that I take right now and it does help somewhat!!). I also respond to IVIG, IV fluids, salt increased (big time), rest, staying in out of the heat, etc. Doesn't differential count at all here?? I also understand how hard this is for my husband, truly I do. However, I find that I sometimes just keep symptoms to myself these days. I don't want to be that broken record anymore. Although, sometimes I'm afraid that people interpret this as "Oh, well, she's all better now, huh?", you know? My best girl friend keeps on telling me that I shouldn't be upset because I don't "look sick". ARGH!!! Sometimes, it would be so much easier if I did look sick, you know? Does anyone else feel this way? I know that it's a horrible thing to say, but it's true. I also feel like some docs look at me and think that same thing. I'm quite over weight and I'm sure that they attribute all of my problems to that. However, I wasn't always fat. I got this way by not being able to exercise or be very active. I can't be in the heat at all and in Colorado it's a little chilly in the winter to go for walks, etc. Anyway, my point is that being sick is what's made me fat, not the other way around!!! I go for my echo on Thursday, so maybe something will turn up there, huh? If not, I'm going to ask for the blood test and the 24 hour urine thing. Those should show something, right??? Thanks again, guys!! Rebecca

I just came home from my second TTT and the results were similar to the first one. My HR increased by 27 BPM this time..............now I'm three beats short instead of just two!!! ARGH! Basically, I'm being told that that doesn't qualify for POTS. Okay, fine. Then what's wrong with me??? Does anyone have any experience with Shy-Drager Syndrome? It had been suggested to me pretty early on in my quest for a DX, but then it was dismissed because 1) I'm too young and 2) I'm female. Now, correct me if I'm wrong but, is it IMPOSSIBLE for me to have Shy-Drager and be a 34 year old woman?? It also seems funny (ironic) to me that all these different syndromes, diseases, whatever, have the same treatment (essentially). I've looked up several different "types" of dysautonomia and they're basically treated the same way. I have most of the symptoms of most of these conditions; as most the symptoms are the same!!! I think I'm doubly frustrated because so many of them "don't have a set test to DX". ARGH!!! I still haven't had the 24 hour urine done and that seems to be a pretty big one for most of these conditions. I really wish that I could just make my way to Ohio and see Dr. Grubb, seriously. I've found a wonderful doctor here, but she's really just learning (from Dr. Grubb) about POTS (specifically) and doesn't really know much about any other sort of Dysautonomia. My Cardio's PA (who was the one who did the test....not even my "real" doctor showed up.... ) said that I needed to follow up with my Neurologist AGAIN!!! I've been seeing a Neurologist off and on for over ten years now. Now, if the Neuro's were going to DX me, wouldn't they have already done it???? I just can't imagine feeling this way forever!!! Also, my symptoms seem to be progressing, ie. the voice weakness, inability to swallow properly, water shooting out of my nose, super chronic fatigue. It scares me to read things like about Shy-Drager that state that the prognosis isn't so good long term. I've already started having some real breathing issues and I seem to get Pneumonia all the time. What if? What if....I never get tested for the "right" disease/syndrome and I just end up dying before they ever figure out what's wrong with me??? I'm sorry, to be so dramatic, but, I really am getting scared that the medical community just doesn't know what's wrong with me and never will. Therefore, never be able to treat me and thus..............it'll kill me in the end!!!! Please, please, please I need to know that I'm not alone here. I need to know that I can move forward and get help. I've spent so much money on tests and procedures and med's, etc and I'm still sick. My poor husband is about to divorce me because he's starting to lose faith in me, I know it. He says that that's not true, but I can feel it, you know? ****, I'm starting to lose faith in myself, too. And that was the last thing I had left to lose.............. (HEAVY SIGH) Rebecca

I go for the follow up TTT tomorrow in the morning. I'm having it done with my new favorite doc (my cardio). She's super amazing and wonderful and the only doctor I've seen in years that didn't make me feel like a nutter!!! I'm also going for an echo on Thursday. She listened to my heart and looked at the results of the looping moniter and was very upset that no one had ordered one already. My heart seemed fine while I was sitting, but, when she took a listen both while I was supine and upright, she didn't like what she heard. She wasn't any more specific than that, but, she did seem quite concerned. HHHMMMM......any thoughts on what that could be? Anyway, I'm checking in to hospital at 7:30am, so I should know something this time tomorrow!!! I'm really nervous that it's going to come back at 28 beats per minute increase again and then I'm (technically) not DX with POTS. UGH!!! Then what, aye? I'll let y'all know what happens!!! Keep your fingers crossed that all goes well and I get some meds so that maybe I'll start to feel better. (sniff, sniff) I'm tired of feeling this way and so are my children and husband (of course). Rebecca

Melissa- Good luck. If it's any consolation or if it gives you any more hope I've had IVIG treatment and it did work wonderfully. I won't lie and say that the treatment was (is) a piece of cake, because it's not. But, for me, at least, it was worth it!!!! Do you know how long of a course they want to do? I had mine over five days. The first one being in the hospital as well. You can PM me if you have questions or concerns that I might be able to assist with. If not, I'll send my warmest wishes, crossed fingers, good joo-joo and prayers your way!!! Good luck on your journey! Rebecca

Tammy- I hear you, too!!! I have two little girls, 8 and 5, that are home all day for summer break. The heat really does me in, as does the brightness of the sun here in "Sunny Colorado" (why do I have to live in the sunniest place in America??? Over 325 sunny days a year....humbug!!!). Of course, they want to be outside, but I can't spend too much time out there or I pay for it for days!!! Everyday of their lives, they see Mommy having to take a nap just because I took a shower!!! Great example I'm setting, too!! I feel so overwhelmingly guilty about the fact that my whole family has had to adjust their lives "down" to my ability level. My husband used to be an ER trauma nurse, so he does understand illness. Both of our Mother's have MS, so we both understand if from the child's point of view, too. It's really hard, however, to make my little ones understand that I'm different than other Mommies and not because I love them less, but because I'm ill. I've been ill since before they were even born, but I flared really badly last year and am just now starting to get some strength back. I've always just pushed through that pain, fatigue, SOB, whatever (until I would hit the brick wall, which of course, I always hit HARD!!!). Then I'd be hospitalized or just down for the count for weeks or months on end. They (my kids) had gotten used to that cycle, but this....this is different. I've been down for the count for thirteen months now. My children have both had two birthday parties since I got sick........they've both been neglected and abandoned by me. Thanks to my illness............. I try to be a good Mom, but there are days when my mood is horrible. My patience is nill. My fatigue takes over and I just want to curl up and die. Today is one of those days. I just screamed at my 8 year old for something that I've addressed with her a thousand times, that she can't quit doing. (She has Asperger Syndrome, a form of Autism) I know that she can't quit doing it, but for goodness sakes, there are days when I just can't take it anymore. Anyway, sorry Tammy, I didn't mean to rant myself, but I just know that pain and grief of feeling like you're missing out on your own life and worrying about the impact that you're having on your child's. It ***** and when you figure it all out, please.......let me know!!! LOL You're not alone. You have support, even if it's just from here. We all love you and know that you're doing the best that you can right now. Good luck on your journey!!! Rebecca

Well, I'm back, and I have to say that I'm somewhat impressed and somewhat disappointed. I'm impressed because both doctors worked well together and didn't seem to feel threatened by the other one. They took turns talking and listening.....quite a shock!!! I'm disappointed because they didn't DO anything other than refer me to a new doc. BUT she apparently has seen three POTS patients before and has spoken to Dr. Grubb on the phone several times. She's the closest thing to a POTS doc we have in these parts (apparently). So, my appointment with her is set for this Thursday at 11:30am. I've been instructed to keep on my Mestinon and to increase my salt (again) and just wait for Thursday to come!!! My Neuro seemed somewhat relieved to have another option for my DX other than just MG (since I don't fit that mold too well, apparently!! LOL). I was glad that he was glad and everyone seemed to get along nicely. Both docs, which are in the same building as the "new" doc (oh my!!) are going to forward, my rather huge, files on for review by the new lady. (SIGH) My PCP did say that the foggy brain thing is perfectly "normal" with POTS and not to worry too much about it. Is that true? Does the fogginess get better with treatment or not so much??? I'm really concerned about that part of the illness. It seems like the one that we have the least control over (not that we can control the physical, but it seems to me that meds will work better on the body, rather than the mind.....). Anyway, now I get to wait AGAIN!!!! Thanks for all the nice thoughts, fingers crossed a prayers.......they're all appreciated. Rebecca

I'm headed to the shower and then all the way across town to see my two docs. My Neuro never did call me back, so he might be a bit surprised today when the appointment isn't just with he and I . Oh well, I tried to communicate with him..........not my fault right? Regardless of fault, I'm worried that he's going to feel ambushed and not want to help me now. That part makes me angry because I really did try (for the past three weeks) to contact him. (I know what y'all are going to say; I need a new doc. He's my third Neuro, though!!!) I just want to be treated. I just want to feel normal again (or close to it!). I want to be able to work. I want to be able to play with my girls. I want to be able to go out and have fun with my husband. I want my house to be cleaned and my laundry done and not use up every ounce of energy that I have for the whole day, in doing so!!! I want to be able to remembe what I'm doing. I want to be able to work out and lose some weight again. I want to sleep when I'm supposed to sleep and be awake (and alert and energetic) when I'm supposed to be awake. Is that too much to ask??? Maybe. All I know is that I'm hopeful that they will PX me something for some of these symptoms. I'm bringing in the article from Dr. Grubb, so I'm hopeful that that will help them know where to turn first, etc. Hey, does anyone know if Dr. Grubb would respond to my docs via an email? His email address is listed at the end of the article, so I was going to mention that to my docs as a possible resource (??). I would love to be able to go see, Dr. Grubb, but alas, I can not. I can't afford it and I can't wait until next year (his first opening for a new patient!!). Sometimes, I dream that I get some sort of funding so that I can go see him. Like from some TV show or something random. I know, I know, it's crazy and dumb, but I can dream, right?? Anyway, wish me luck with the big Docs, today. I didn't sleep last night because my brain wouldn't shut off . Now I'm too tired to think straight..........funny how that works, aye? Bec

I need help in finding a link to the articles that I hear so much that are written by Dr. Grubb. I tried to search this site, but I can't seem to find it. Can someone help, please?? Bec

I've been doing that for about the last 18 months or so. I kept thinking that I was getting a cold or bronchitis or something, but it would never evolve. I also get the random fever and sore throat, so combine all that and that's why I thought it was viral, but it only lasts for a day or even a few hours, then POOF, it's gone. I wonder what it is?? Bec

Thanks guys!! I needed to hear that!!! I've been in therapy off and on for 15 years (for totally different things than disease, but nonetheless....I've still been going!) and my doc says that I'm quite sane. She's wonderful and I wish that I had the money to keep seeing her. However, medical bills have taken over our lives and that's where all of our money seems to be going these days!! I noticed that no one has the problems swallowing..... . I read it on a website somewhere that dysphasia is a symptom of Dysautonomia and/or POTS, but only on one and I can't remember which one (of course!!!). It doesn't seem as though this is a very common symptom, but it still could be a symptom, right? I'm very hopeful that once I start the treatment for all this, that I'll be able to swallow solid food again!!! It's been a year now......(sigh) I thought that I'd share my most embarassing moment of the week.......... I called my sister yesterday and in the time it took me to dial her number and then when I was supposed to put the phone to my ear......I had already forgotten that I had even called anyone and I put the phone down and took the laundry from the washer and put into the dryer. Then I thought, oh, I should call my sister and I picked the phone back up and it was flashing a busy signal in my ear. I thought that that was weird, but didn't think much of it. Then I called my sister and she asked me if I was doing laundry. I said, "No, why?" (having already forgotten that I WAS doing laundry). She told me what I had done and I was super embarassed. The worst part was the I never even started the dryer!!!! UGH! Sometimes, I feel like a real idiot!!!!

#1 - Does anyone notice that, if you do drink alchohol, that you can actually feel it going into your blood stream? I can feel it burning as it goes in. Then, there are times when I can drink and drink and drink and not feel intoxicated at all and then there are other times when I can have half a drink and be too drunk to walk straight. #2 - Do y'all get all flushed just from feeling embarassed or nervous, ie. like an interview or when a cute guy (or girl) comes around? When drinking alcohol? Eating certain foods? #3 - Sometimes, I have trouble.........ummmmmm, gulp, having an orgasm. My sex drive seems to come and go for no real reason at all. Anyone else feel like sex is a chore, especially if you can't finish nicely??? (Sorry I couldn't think of any other way to put it!) #4 - I seem crazy sensitive to meds. Even things like Tylenol. #5 - Anyone else have trouble swallowing and speaking? You can hear my heartbeat when I talk, "IN" my voice. It's kinda spooky, I must say. I haven't been able to swallow solid food for over a year now. #6 - Temporary paralysis? #7 - I get this weird thing when I'm falling asleep (and it seems to be seeping into some awake time now, too) where I feel like I'm getting really tiny, but, my arms and legs and face are getting huge. Like, me, my essence of being, is shrinking and/or my actual body is getting huge. It becomes so disorienting that I can't fall asleep and I have to keep moving to feel the covers and my bed to make sure that I'm not swelling to gigantic size. I'm sorry I know that all of this sounds crazy, but I've asked all of these questions on my MG site and got some reassurance, but not a ton............am I completely insane? Rebecca PS - Plus I've been smelling rotten meat, burning electrical wires, poop, vomit and amonia for years now, but that's already been addressed.

I also get the hear beating out of my chest feeling when I wake up. Sometimes, I think that that's actually what woke me up in the first place. I'm wearing a looping monitor and I'm supposed to press the button, but I'm so out of it that it takes me a few minutes to be aware enough to press it. I also find that when I get that way I sweat like crazy. Anybody else? It can be the dead of winter, here in Colorado and I'm sleeping with the ceiling fan going and burning up. (Unless of course, it's summer and I'm freezing, that happens, too!!! I took a nap this afternoon with a down comforter and still couldn't get warm enough to sleep!!!) I'm hoping that some meds will help regulate my system and these things might not happen so much, but it sounds as if the meds can make some of this worse, no? I'm still in search of a firm DX for goodness sake! Keep your fingers crossed for me, that all goes well on Monday and I get somewhere!!! I didn't want you to think that you're a nutter or anything. I truly get that startled feeling, too. Rebecca

Thanks Megan. I'll wait to see what my docs say on Monday and then, if need be, I'll contact Dr. Holland and see what he says. I live pretty far up North in the Metro area, so Boulder is not out of the question at all. Heck, right now I drive all the way to Parker to see my PCP and Neuro!!! That's way further than Boulder is. I've also gotten some PM's from someone else who lives in Colorado and I might give them a call tomorrow!!! I just need to know what we're doing to get treatment in Colorado, I mean, really?!?!!! I can't even imagine trying to go out of state every time I needed a little tweek here and a little tweek there. I see my Neuro all the time for the MG stuff. Thanks again, for everyone's supportive replies. I'm having a horrible day today and I can't seem to keep my train of thought going very well. So, sorry for the abruptness of this post. Rebecca

I've called and made two appts for the same time with both of my docs (Neuro and PCP). They just happen to be two doors down from each other, in the same building, so it will be convenient. I can't seem to find anyone here in Colorado that has a clue about POTS and all the other docs around the country are either not that knowledgable either, booked through next year or are just too far away to be feasible for me to see. So, I'm going to try to make my doctors learn as the go and treat me. Why can't they do that right? I mean, they ARE doctors afterall and there are sites made for them about everything out there. Heck, half the time, when I do a search on POTS the articles that come up are obviously written for medical people. I'm very bright, but I have a hard time getting through all the jargon. So, with that, couldn't they search these same sites and learn about it and treat me (to some degree)??? What chance do y'all think I have of this working? Have any of you tried this tactic? How did it go? What do folks like us do, when we have a condition that no one in our entire STATE seems to have a clue about? How can THAT even be possible??? In this day and age??? In this country??? I mean, seriously.....this disease isn't that uncommon, is it??? I can't be alone in Colorado with POTS, right? I'm stressed, I'm feeling bad today and I just want to think that, someday, this all might get better!!!!!! Rebecca

Megan- Thank you soooooooooo much. That is exactly the information that I was looking for (and needing to hear). I know that there is no cure for POTS, but some treatment (besides what I'm already doing) would be amazing. I don't think that I have Lyme either (just by the occurence rate here in Colorado) and even if I do, like you said, the damage has probably already been done and therefore I need to focus on treating the end result, too (maybe even more so). Anyway, I just wanted to thank you for taking the time to be so generous with your knowledge and information about the subject. Rebecca

I just went to the CDC's website and looked up the number of cases of Lyme per state and it shows that Colorado has like 0-1 (per 100,000 people) every year! That's just about as low as it goes, aye? Then there are states that have like thousands!!! How is that possible? My goodness!!! Anyway, I'm afraid that my doc will look at my like I've got four heads if I ask for a Lyme test and I tell him that I was bit by a tick when I was in high school!!! Plus, isn't the test (the blot one) really expensive and only done through one company and they don't accept insurance?? I'm flat broke from all the MG testing crap, ie. Athena Diagnostics tests, , that came back normal!!! With my luck, the Lyme would be the same way. Shouldn't I try some POTS treatments first? If it is Lyme, won't the treatments for POTS be ineffective? I'm new to all this and it seems to me that there has to be SOME way to differentiate between Lyme and POTS without an expensive blood test (at least at first.....not to officially DX or anything). Am I wrong? (Probably, huh?) Rebecca

I keep hearing about how wonderful Dr. Grubb is and I would love to see him, however, the problem becomes expense. I have family in Texas (and North Carolina) that I could stay with and I could just drive from here to Dallas or get a cheap flight from Denver to Dallas. That isn't true about Ohio. I have two small children that I'd have to bring with me, as it's summer and they're out of school and I'm their care provider. So, it becomes quite expensive to fly three people to Ohio. Does Dr. Grubb do anything like mabye over the weekend (for special cases like me who need the weekend, so my hubby can watch the kids)? Or maybe does anyone know of a place that I could stay for super cheap? I know that many of you have traveled many states to see Dr. Grubb and I know that y'all are aware of the importance of a good doc and just what he IS or is NOT willing to do for us. Maybe, if some of y'all could private message me and tell me your Dr. Grubb stories, it would be amazing. Rebecca

So, I just called and left voice mails for two docs in Texas (the closest state to me with a specialist). I'll wait and see, I suppose. No choice, obviously. I mean, what are my options if no one in this state is even willing to DX me, because they don't feel qualifed to do so? I can't even get a script at this rate??!!! Luckily, I do have the Mestinon, which does help, but it's only a small amount of help in the grand scheme of things. I suppose that that's better than nothing, right? I've been doing the high salt thing along with the Mestinon and the IVIG and it does seem to help. Although, I'm quite swollen all the time. Any cure for that?? Rebecca

Okay, well after talking to my GP yesterday I feel much better. He assured me that my TTT wasn't "normal" in the sense that my HR increased by 29 BPM with a 60% incline. That isn't "normal" at all, he said. He apologized for the Cardiologist and TO me for the fact that he hadn't really spoken to her ahead of time and he neglected to send over my EKG readings from the past two weeks!!! So, anyway, I had him come to this site and take a look around (with me in the phone to hear his reaction, of course!!!) He took one look at the symptoms page and said "Geez, they should just put 'Rebecca's Symptoms List' at the top of this thing!!" So, in some weird way that made me feel better!!! Now for the crappy part.......(isn't there always a crappy part!??!!) He says that he isn't qualified to treat POTS and isn't even sure if there's a doc in the state that is. I've checked on the list here and sure enough, there isn't a doc listed in Colorado (or anywhere near by, really!!). So, what do I do? I've already spent thousands of dollars having tests done for MG (most of them coming back "normal" - Geez, I hate that word!!) and having the treatments for MG, ie. IVIG treatments and immunosuppressant drugs, steroids, etc. So, basically, I'm broke. My Neuro wanted me to go to Mayo for the "atypical" MG thing (which now I believe has always been POTS!) and Mayo in Arizona "accepted" me and was really anxious to see me, so I had an appt. made for 3 weeks from my acceptance date! Great, right? Wrong. I can't afford to go. I found, on the Dr. list, a doc in Dallas and I was wondering if anyone had/has seen him. Dang, I forgot to write his name down, but he's the first one on the Texas list (I think) and it says that he's interested in the "Gender specificity" of POTS. Again, I'm not sure that I can afford to go to Dallas, but I do have family an hour outside of Dallas that might be able to help me, ie. put me up, etc. if I can get down there. I just want to know if he's a good doc and would it be worth the expense to go see him?? I need someone to start treating me for goodness sake. I can't feel this way forever!?!?!?!? Any suggestions are welcomed!!! Rebecca

SPACE - THE FINAL FRONTIER..........God I hope not, because I'm there everyday!!!!! I, too, get that oh so spaced out feeling. I forget what I was doing, or about to do, or need to do, etc. I try to write things down and then, of course, can't find the list. I'll be watching TV with my husband and miss and entire segment of the show (thank God for Tivo!). I'll ask him what I missed and he looks at me like I'm nuts because I was sitting there the whole time!!! LOL (He then rewinds it for me!) Even as I type these posts I find that I start to "zone out" a lot of the time and I have to reread what I wrote to figure out what I was even trying to say!! Geez, it's just awful sometimes. Hey, has anyone ever dialed a phone number and then before they can even answer it, you forget who you were calling and why you were even calling in the first place?? Love that one!!! What an idiot I must sound like to my friends and family!!!! Sorry, LOL, I actually just lost track of my thoughts and can't find them again, so I'll break here, I suppose!! Oh well, I think y'all got the jist aye? Rebecca

They gave me a bag or so of IV fluid yesterday and I have to say that by last night, I felt better than I have in a while. Even being the worse for wear after the test, with a killer headache, etc. Do IV fluids make everyone with POTS feel better? If so, how long does it usually last? Rebecca

Morning to all!!! Hey, guys, thank you for all of your support. I'm really feeling (emotionally) bad now, can't lie. I was reading (on this site) about the TTT and the fact that if the BP cuff is left on for the whole test and it's tightened the whole time that that will (could) give false negatives/positives depending on the person. Well, I'm quite large and they seemed to have a hard time getting a larger cuff so the ones that they used for me were constantly tight. To the point where both of my hands went numb and were actually hurting by the end of it all. Plus, I was allowed to talk while lying down and during the actual tilting part the Cardio kept on asking me questions. At any rate, my BP was solid as a rock (according to the doc). Even after my Nitro, which I was told (by the doc) "Okay, the response from even a normal person with this is to have your BP drop like a stone and for the heart rate to fo through the roof." Welp, my heart rate jumped to 170 and my BP........you guessed it, it didn't change. Now, isn't that weird in and of itself?? Sally, yes, I was quite tense during the whole thing. Even when I was supposed to be "relaxing" I couldn't because the table was so narrow, I was having to hold my arms up the whole time. My calves hurt so badly that I kept adjusting and fidgeting to try to relieve that painful feeling. No one told me not to either, so I thought that was fine. I was laying there talking to the technician the whole time, showing obvious signs of discomfort. I mean, I have SOMETHING going on where I'm sure weak and for goodness sake, I can't hold my arms up by myself for that long!!! My shoulders today are screaming at me!! I had just had shoulder surgery, too, so that shoulder is in really bad shape. My normal BP, like at my PCP's office is like 90/54. I always get compliments for it being so low........geez, if they only new the havoc it creates. Anyway, when I went in yesterday and they took my vitals, 1) I had a fever (which I seem to get all the time for no real reason) and 2) my BP was high because I was so stressed about the IV and the test. My BP was 120/90!!! That's insanely high for me, but, because it falls within the "normal" range, nobody thought twice about it. God, sometimes, I wish that the word "normal" was removed from the English language. No one is "normal, really!!! So, anyway, I just think that the whole thing was done poorly and that nobody seems to give a S*&T about that fact. It's a square peg, square hole kinda world. And I should just suffer in silence, beings I'm a triangle and all..........LOL. Rebecca

Okay so here it is. That was the worse experience I've had in a long time. I laid there for a while on this table that was too small for my fat hiney and tried desperately to find someplace to put my arms. There wasn't any place. Then I was brought up to 60 degrees (not the correct 70) and run through the gauntlet. I was then told that I was fine, my heart was fine and I could go home. WHA?? I heard the cardio giving report and she said that my heart rate increased by only 29 BPM. Now correct me if I'm wrong, but if I had been put up to the correct angle, could I not have gotten the one little extra heart beat that I needed to be considered POTS? (My understanding is that at 30 BPM increase, it could be POTS, am I wrong there?) Anyway, no arrythmia's today, no Tachy feelings, nothing. I woke up feeling pretty good. OF COURSE!! I seem to always have this happen to me. When I'm at death's door, can I get in to see someone, NO!!! So, I'm still wearing the heart monitor that's recorded all of my weird heart stuff for the next two-three weeks. Of course, my wonderful and charming PCP conveniently forgot to forward all of that info over to the Cardio so she looked at me like I had five heads when I had the audasity to question her about all those results. I'm wondering, should I try to do that terrible test again (PLEASE SAY NO, PLEASE SAY NO)? Is that it? Is it for sure that I don't have POTS is that test didn't show it?? I nearly passed out three times, but never actually got there........really, really close, but, no cigar. I never even really got to speak to the Cardio. She showed up after I had already been laying there for quite a while (of course, as it should be) and then we did the test, she went around the corner, called and made her report and left the room. That was it. No talky, no questions, no nothing. Just "see ya"!! What else can I do? I know in my soul that I have this. It just fits all my crazy symptoms too closely!! AAAAAAHHHHHHHH, I'm just crying my eyes out, can I tell you? Rebecca

Someone just emailed me at my personal email address with the subject line of POTS and MG and it went to my junk folder and I only noticed that it was in there, right as it was being emptied!!! I don't even know whom sent it. So, if it was you that sent it, can you please resend it to me (and thank you!!). What a dork I am!!! Rebecca

Nina- Thank you. Those are great ideas. I will do that, if need be (the whole cafeteria thing). I'll be getting back to y'all soon!!! Rebecca