Lauren78

This was great!! Thank you so much for sharing Michelle. I look forward to passing this on to friends and family as well!

Hi Melissa. I apologize for making that POTS specific, that certainly wasn't my intent. I do realize that it's all dyautonomia's, I guess it's easy to just generalize for the disorder I have. Sorry about that! That's true...they do have more specialist, so that could be a good reason why too. Hopefully as more awareness is raised on dysautonomia's that more information will be forthcoming and studied for the sake of all of us.

How VERY interesting that the vast majority of people are from Ohio!! Now, curious as to whether or not that had any influence on obtaining POTS? Seems like a LOT of Ohioans and also a lot from NY, PA and that area. I wonder if there has been any studies on this relation. I am originally from that area too...so how very interesting!

Thank you everyone for your input, advice, and other non-gatorade alternatives. Thanks Sophia for that clarification. I think maybe I won't discard the gatorade, I think I just won't drink as much in one day. I like the idea of diluting it and having it with a salty snack...so I will give that a try. It's true...what works for some doesn't work for others...like must things with us Potsy people, it's trial and error!

Hi Angela. Sorry to hear you are ill. Yes, coughing, sneezing...and even a big breath or sigh will sometimes make it tachy or feel like I skipped a few beats. So I think it's fairly common, as others have mentioned. If your doctor wasn't too concerned I wouldn't worry to much about it. Hope you feel better soon!!

Hi All. I think it's wonderful how many of us are on this board and how supportive we all are of each other. I would truly feel lost without all of you. Anyhow, I am just curious and thought it would be fun to know what state/country everyone is from. I am from Arizona...and the summers here are horribly hard with POTS, not much humidity, but 110 is hot regardless! However, the other 9 months of the year are perfect!!

Thanks guys. Yeah, I don't know either. I didn't drink it too fast...or at least I don't think so, it was drank over a 5 hour period. I guess it could be the sugar, but I have had other sugar stuff with no effects. Very curious. I guess it's possible that is was just a coincidence. But it happened after every time that I drank some of it (yeah, I know...so why did I continue over 5 hours. LOL. I was at work and needed the fluids). I don't care for Propel, it has a fake like flavor to me. I have had the glacieu vitamin water which has vitamins and electrolytes, but it's kinda pricey for water and I can't drink gobs of it. So, I am confused on what you said Sophia about water washing us out further?? I thought water was ideal to drink lots to pump up the blood volume? Also, is it the vitamins or the electrolytes we are trying to get, in addition to the retained fluid and pumped up blood volume. I thought it was electrolytes? I guess I will try the gatorade thing again in a couple days and see if I have the same reaction...kind of a rule out process.

I haven't had the burning of the neck or eyes. Although I have terrible dry eyes, and I too wear contacts. I do get the bouncy vision thing though. Sometimes when I am trying to read something it's like my vision twitches all over the page and I don't know why. I also get bouncy and bug eyed in grocery stores, libraries, etc where there is lots of items around to look at. I figured it was the POTS, as outside of needing contacts my eyes are fine according to my eye doctor. It is a curious thing though, and I do wonder why it happens. And why sometimes it really bothers me and sometimes it doesn't. I get dizziness with it sometimes also. So, you're not alone on this one!

Hi All. So, I admit, I am TERRIBLE at keeping myself pumped full of fluids. Mainly because time gets away from me, and because I pee more often than any pregnant woman I know! Anyhow, I decided to drink lots of gatorade today (I usually only drink like 8-16 oz of gatorade and then water or tea for the rest of my fluids). But today I drank 32 oz of gatorade and it made me really lightheaded and dizzy. It was very odd. Has anyone else had this happen to them? Do you think it was an electrolyte overload and I got imbalanced? I drink more fluids when they are flavored, but I am worried about trying to drink that much gatorade again. So weird...any ideas or same experience with this?

This is absolutely great! I loved all of these...I don't have any to add yet...but laughed so hard at these and agreed with nearly all of them. Sure is great to have people who understand...and have the same sense of humor to help them get through it all. Thanks for the laughs!

I don't really get the nausea...but I get substantial bloating! I mean it looks like I am in 2nd or 3rd trimester of pregnancy! I find lying down helps with the uncomfortableness this bloating causes me. I have noticed that if I eat really small meals (like 200 calories) it doesn't do that. So I just try to eat 6 small meals throughout the day. Lots of low-fat, high protein, good carbs type foods to keep me healthy and full. I know statistics state that a lot of POTS sufferers get aggravation upon heavy or big meals. Have you noticed if this is all the time, or if it just happens after a big (what may be normal to others) meal?

Thanks Doctorquest. I am not sure why he wants to try a high dose first either...to me the logical course of action should be to start low and build from there! I would love to take the midodrine, and he suggested that when I said no to the florinef. I actually had a script for it, but when I went to get it filled it was going to be $140 a month for generic. I just can't afford that. Are there any alternatives to the midodrine that have the same working properties?

Hi All...thanks for the responses. Thank you especially for those of you currently on, or who were on florinef, that told me your experiences. Doctorquest: My symptoms aren't bothersome if I am lethargic or lying around the house. But if I am trying to be active, then I get fast heart rates. Walking around, going up steps, housework...gets me between 120-170, depending. I like to try to exercise, light weights, walking on treadmill...usually 130-160 there. I used to hike a lot and would love to do that again, but heart rate gets too high and I get the palpitations with that. I want something that will take care of the fast heart rate and hopefully allow me to do some activities, like hiking, again. The anti-arrhythmic drugs sounds scary because he said I would need to be on a very high dose to control the fast heart rate that happens daily. But my resting bpm is 48-55, so he said it could lower my heart rate too much when resting and that anything that naturally suppresses the hearts rhythm can increase risks. Also said my blood pressure could lower, which it already sits at 87/65. Of course he is really wanting to do a EPS for diagnostic purposes, so maybe that's why he made the anti-arrhythmics sound so scary. I have increased my fluid and salt intake...hasn't helped with the fast heart rate. I haven't tried compression stockings yet...but in 115 degree heat, it's not an option at the moment! RQT9191: No...this is an electrophysiologists...see I originally went there because we thought I had arrhythmia issues and didn't relate the other symptoms as being related. After testing discovered I have NCS/POTS. Would I be better advised to now see an autonomic specialist? Anyone know of any in AZ? Cardiatec: Thanks for the info. I don't think the cardio is concerned about them...I just think they are a little EPS and ablation happy. I don't know why I would need to be on a "very high dose" one though either. I will call tomorrow or Tuesday and see if I can find out what one they want to put me on and then I will report back and maybe you can tell me what class it is and if it's a good idea? I am just hoping there is a better route than florinef for the fast heart rate...maybe the anti-arrhythmic is the way to go?? Or maybe I should see a autonomic specialist first??

Hello and welcome!! Yes, I was very athletic...volleyball, softball, track, soccer, and cheerleading. My presenting symptom was tachycardia and fatigue. I have never had children, so that's not a factor for me. The thought is that mine was brought on by a viral infection. Steps make my heart go crazy for sure, I am 55/bpm at rest, and once going up stairs I am about 160/bpm. Just standing and walking will get me to 90-120/bpm. Glad you have found comfort on this board...everyone here is great!

Hi guys...alright, so my cardiologist and I have been going round and round about my prescriptions since I don't want the EPS study. (Angela I promise I will get those rhythm strips to you soon, my mom went into the hospital...still there, so I don't have access to them or a fax at the moment). Anyhow...my tachy (sinus tach) is still a daily occurrence and my cardio doesn't like that. He insists on the Florinef (I refused it before) or anti-arrhythmic drugs. He made the anti-arrhythmic drugs sound scary (maybe on purpose). Anyway....I am considering the Florinef...reluctantly...because I want to get my heart rate under better control. So...my question is this...how many of you that take Florinef have been on it long term? What have the side effects been? He wants me on 0.1mg EOD, which I know is a very low dose. But I am still concerned about taking a steroid type drug long term...the effects on my kidneys, liver, etc. Wondering if anyone has been on it for several years or more and what their experience is. Also about the anti-arrhythmic drugs (W or W/O Florinef)...any adverse reactions with those? My cardio says I would be on a very high dose and I would have to be monitored monthly to make sure my blood pressure doesn't get too low (normally 85/67). So...what do you all think? What are your experiences? Yay or nay to either of the drugs?

Hi everyone. Well my doctor isn't comfortable with licorice root since it's not a prescribed medicine and isn't FDA regulated since it's a supplement. They said if I want to do it, then it's on my own and they won't give me any dosage info. They pushed the florinef again stating I should try that. So I don't know what to do...I don't want the florinef, and would like to try the licorice root. I am just wondering if it's a good idea to try it without doctor supervision?

Hi...I am allergic to some meds, but had a MRI with gad and had no problem with it. Outside of the cold sensation when first injected I didn't notice anything...no reactions, no sickness, etc. I believe gadolinium is very safe...I asked my doc before the MRI and he said maybe 2% of people have had a reaction, and none of them was life threatening. Of course everyone is different, but if your doc knows your history and says its fine I wouldn't worry. Hope that helps!

Nicole...is it health insurance you are looking for, or disability insurance? I believe it is health, so I will answer as such. You can purchase an individual policy...this is not through a parent, employer, state, or college. It's an individual plan with you and the insurance company directly. Almost all carriers offer these plans. The downside is the deductibles or the monthly premiums can be pricey...but it's better than not having health insurance at all. I have individual health insurance. Go to www.ehealthinsurance.com and you can compare companies, prices, and even get their AM Best rating, etc. You can even sign up for the policy online there. Hopefully that will help you!

It's been nice chatting with you here Mary. Do stop in and "see" us every once in awhile. I can see how reading excessively and getting "too absorbed" here can make you worry and think about POTS too much. However, this is also a great place full of wonderful information and even more wonderful people. I do hope that you pace yourself, and allow yourself to come back now and again to touch base, let us know how you are doing, and ask any questions or pick up additional info. No matter what, stay positive, know you have a support system here, and good luck! All the best! Lauren

Yes, it does dehydrate you. I can't do any caffeine...tachy gets all out of whack! NO soda, coffee, tea, or too much chocolate for me. I drink flavored waters, decaf iced tea, and gatorade to help with the fluids...and they will add calories too. Gatorade is great because it also has the electrolytes in it. I like the gatorade am...it has less sugar than the regular (17g, as opposed to 40g). So if you want calories and plain water gets to be too much to keep up with fluids (which it does, I have a hard time just drinking lots of water...its too plain unless I am eating or really hot! lol)...I would try the Gatorade! Or something like cranberry juice, grapejuice, etc. Hope that helps!

What you just described is me to a T!! I also fly when standing and doing anything...picking up my cats (I have two!), doing laundry, out in the sun, walking in a parking lot...and everything you mentioned. I am not on a beta though, I wonder if that would help. Sorry to hear about the bike ride...that *****. I hate when I do something like that and then get SOB and all tachy...I just crash! I try to be active, but find it is harder and harder. That was the first time we went hiking in 6 months. It was labeled an "easy" trail and thought I would give it a go. It was easy, but not for me. Seriously, 60-70 year olds were passing me up! After my episode with that my fiance told me that was it...no more hiking until things are under control. I try to stay active because #1 I will go insane if I don't, and #2 I feel that it should help with heart health, etc. However it is very hard...I mean walking to the store from the parking lot gets me to 160 (esp in the summer where it is super hot here). So I guess that should count for cardio, right? LOL The doc is not at all definite on the atrial tachy...just suspects because of that one strip. Said it abruptly stopped instead of tapering. He wants to do the EPS just for diagnostics. I feel like they can diagnose the difference between sinus tach and atrial tach another way. Like with the stress T-mill test you suggested. Can't wait for you to read the strips!

Hi Nina and Cardiatec. Nina, I will respond to yours first...since it is shorter. That is what worries me...can't be undone. And they said if it's too close to the SA node and accidently get that, then it's a pacemaker for me! I think that a trial run on meds for several months to see what happens is the better option. If that doesn't work, then consider an EP study. Ablation, as you point out, is irreversible...so a pretty major decision! One that my entire family (of which my step dad is a GP) said to not do just yet. Cardiatec...thank you SO much for your incredible reply. I will answer you as best as I can. OH, and if you want to see my strips and have a fax machine I would be more than willing to fax them too you. I always get a copy of all my records to fax to my step-dad. Just let me know if you want them! The doc isn't sure...he said the EPS study would be more diagnostic to discover where it is coming from, because they aren't definite. When I was hiking and heart was flopping I immediately lied down...it continued for another minute and then stopped. The PA at the cardio office said it abruptly stopped on the strip, but I remember feeling like it tapered off. I also wear an ECG watch and watched my bpm's taper down. On a normal daily basis I can tell it elevates the more active I am, and then slows back down. Sometimes if it is elevated (120-140) while standing and I lie down though it immediately goes to the 60 range (checked this with my watch). But otherwise when I go up stairs for example and it gets to 160 I continue to check my pulse and it goes down...150...145...140...130...120...100...95. So that makes me think most of the time it's pure sinus tach. I do think it may be possible that I have some atrial tachy, like in hiking, unless a sinus tachy can also cause the crazy flopping palpitations also. I looked at it as though I was hiking for 2 hours (with rest breaks) but my heart rate still stayed 120 or higher...so when it got floppy I thought it was because I kept it in sinus tach too long and it had had enough. Is that possible? The monitor I wore was one that I pushed a button whenever I felt racy or tachy and it recorded for a minute or more. The one in question recorded for 6 minutes. So, I can understand what you are saying and how it would be hard for them to differentiate since it only captured the tachy times. I would record one while at rest and send in with the rest for them to see the difference. But there were no strips where it has a rest and tachy on the same strip. I think the stress T-mill test sounds like a good idea. It sounds like they can watch it increase and decrease...or just suddenly start and stop, and be able to tell if its sinus or atrial then? So your saying if they can see it with the T-mill test, then to have the EP study...or not have it?? Thank you for telling me about your cath experience...and your experience watching patients in the cath lab. At least that reassures me that may not be as terrible as I anticipate. I know I would be given Versed for the benzo to make me sleepy comfortable. I have not had a valsalva or carotid massage done. Maybe that is something they should try too. Would some other monitor help them distinguish between sinus and atrial? I know they have the continous loop monitors, but those are only for 24 hours I believe...and it would be my luck that I would have nothing during that time! LOL. I wish there was some way I can monitor it to figure it out more on my own at home! I do think the majority of the time it is sinus tachy, but then again I am not a doctor or heart tech...so I can't say for sure.

Thanks for the info guys. Kind of sounds like the EPS study would be jumping the gun too soon now. I agree that the NCS/POTS diagnosis is so new that maybe we should try different meds to see if that helps first. Sorry to hear about your not so fun experience with the EPS Flop. My cardio doc said that as long as they don't ablate the SA node then it won't effect the POTS. He said the SA node was sensor nerves in connection with the ANS, so that could cause problems. However, they said the node they would ablate is an accessory atrial node that lies close to the SA node, and shouldn't interfere with the POTS. I am not sure about that though. Especially if they get too close to the SA node. Cardiotech...you out there? Any ideas? Also, Flop, I have a question about the sinus tachy you mentioned and asking me the frequency. I have elevated heart rate everyday...walking, stairs, housework, getting up, exercise, etc, etc. I don't feel palpitations or fluttering...just racy...and it's usually 130-160. They said all the recordings were sinus tach...but one looked like atrial tach. That one was when I was hiking, rocky, inclines...and I pushed myself way to hard. With that I felt the racy but also HUGE palpitations, like my heart was flopping all over the place and in my throat and I had to immediately lie down. Soooo....I have sinus tachy everyday. I don't, however, have palpitations with it everyday. Is that normal for you too? What about others of you out there? Is sinus tach normal on a daily basis? I probably only get the palpitations ones (which I assume are the atrial ones) about 1 every few months. What'dya think?

Hi everyone. So, I had a follow-up cardiac appt with my electrophysiologist today (follow-up from tilt table that diagnosed me a month ago, check on meds, and to go over holter monitor recordings from past month). Brief history: when initially visiting the doc for arrhythmia problems they said either heart related (i.e. misfiring node) or ANS related (NCS and POTS). Did bloodwork, history, looked over myriad of past tests and doc said ANS. Did tilt table, huge conformation from that...diagnosed, NCS/POTS. I got the monitor a week before the TTT and wore it for a month. NOW doc says its possible I have BOTH (like any of us need more than one health issue huh?! ) The general concensus is that my arrythymias/tachy is stemming from both POTS and also a atrial node misfiring. They said at first my strips looks purely like a sinus arrhythmia ; but that one of them really looks like atrial arrythymia, and possibly a few others slightly. They gave me several options...and I am in a quandry on what to do. Option 1: Do nothing, either way it's benign...so just deal with it. Take the meds for the NCS and modify my activities. Option 2: Take a high dose anti-arrhythmic drug to control the tachy issues and see how that goes Option 3: Do an EPS study for diagnostic to see if it is just NCS, or both NCS and heart related. If also heart related do an ablation of the atrial node (NOT the AV or the SA node...it's one of the many little accessory nodes in the atria). If no reaction, then pull out and NCS with sinus arrhythmia further confirmed. I don't think doing nothing is an option. I would like to be able to do some activities, especially those I love without my heart getting all racy. I don't know what to do. I am almost 29 (in a month) and not sure I want to take anti-arrhythmic drugs for the rest of my life. What would the side effects of that be? And I don't know if I want something always suppressing the rhythm of my heart (esp. since when at complete rest it's a regular 48). And with low blood pressure, this would lower it more...so would have to be on something to stablize that. Then constant bloodwork and other monitoring. Don't know if I want the test...if they find just NCS, then what a waste and a pain (the study DOES NOT sound fun). If they do find something there are risks of complications (it is a heart surgery per se after all). I also read that ablations in POTS patients can make symptoms worse. Also, there is only a 85% success rate with the one they think it will be for me. So I am really not sure what to think or do now. I totally did not expect this today...I just expected a follow-up, my script to be refilled, and on my merry way. I did not expect them to say that along with the NCS they also think it may be a heart arrhythmia issue too and not just the NCS. Help...anyone have any input, suggestions, experience? Anyone have an EPS done? How about an ablation? What was the outcome? Anyone on here been taking anti-arrhythmic drugs since they were younger and been on them for a long period? What have the effects or side effects been? Any help and comfort would be appreciated. Thanks guys!

As previously stated Melissa, they are both very similar. I have been diagnosed with both also, like Nina. I really can't tell you that I notice the difference between the two (i.e. NCS symptoms one day, and POTS the next). The main DINET site has great info on NCS (as well as POTS). Read through it, and you will probably feel "better" in the sense that the rug is still there.