danelle

Congratulations!!! You truly are amazing. I have been having some really bad weeks lately and hardly able to work. I am supposed to start back to school in Aug.(in addition to trying to work PT) and was wondering if I could juggle it. You really give me encouragement but I don't know if I am as strong as you are. As a matter of fact, I am supposed to take a week long class for a certification in 2 weeks(8-5--M-F) and don't know if I will be able to get through it, I was thinking about backing out but I really want to do this, just don't think my body is able right now--URGH!! I really admire you and your strength. What do you do when you have those really bad "POTSY" days???? Cause it sounds like you get through them somehow. Please give me your secret to your success!!! Danelle

Boy, I wish for a spontaneous recovery too!!! Unfortunately for me, that is very unlikely. I have has POTS(or the sx of POTS) for 18 yrs now. Not for sure what caused it but Dr Grubb is leaning towards the birth of my first child when the sx seemed to pop out with avengence!! All I can say is that I have NEVER been the same since. I do have some "good" times(good for POTS but by no means "normal") but for the past year or so things have gone down hill for me. I will be curious to see how many people respond who have had a full recovery and I sure hope that sometime soon they do find a cure for this craziness because I do believe mine is also due to my genes. I have family with some POTSY sx but they are very mild, just enough for me to notice them. Good luck and hang in there!!

Gosh, I'm so sorry to hear about Sue!!! Please let her know that we are all thinking about her and you, the family, as well. We will keep you all in our prayers. Please keep us updated on how she is doing and what they find out. Hugs and prayers, Danelle

Hi, Dr Grubb has suggested I take Midodrine as my first real med for POTS(other than the atenolol-beta blocker that I am currently on). I am scared to take it though. My BP usually runs low but occasionally when I have a bad spell(esp. in the middle of the night) my BP will run high 150/100. I am very relcutant to try new meds because of side effects but I do want to feel better. He has given me an Rx for florinef to try about 2 weeks after the midodrine. Has anyone taken atenolol or other beta blocker with Midodrine and what did it do? Or have you just taken midodrine in general. Just wondering about how it makes you feel and any side effects to look for!! Thanks!!

steph, couldn't have said it better myself-all of it actually. Justme-you are one great person! your wife is very fortunate! Send some of that supportiveness my husband's way! LOL

justme, what do you mean by almost dying? If you don't mind my asking-what exactly happened?

I actually have started putting salt in my daily 2-3 glasses of gatorade(I get it pretty salty) but it doesn't seem to make that much of a difference in my BP, could be the atenolol-I wish if it were, that it would work on my heartrate the same way!!!! Is using that much salt bad? WIll it deplete my potassium?

Yes, I have had MANY MANY episodes of SVT. I have been on atenolol for 17yrs now (beta blocker) and it still doesn't control all of it.I will have spells with SVT but daily have sinus tachy, and crazy arrythmias with 50-62.5mg of atenolol which is a large dose considering I started out on 6.25mg years ago!! I know I couldn't survive without the atenolol but I wonder too if maybe I have more than POTS, before I started the atenolol I would have SVT several times a day but at the same time would dip into the upper 40's sometimes in my sleep, when I wasn't waking up with another run of SVT or sinus tachy. I have never had an EP study because I am beyond terrified of having one-that word doesn't even do my feelings justice. I did have a heart catherization done a year ago which totally freaked me out even with tons of meds on board(IV benadryl, valium, 3 doses of versed, and 2 doses of phentynl-not sure if that is spelled right) I remember every bit of the procedure and made my doctor stop when he started to enter the left atrium because of the runs of PVC's, small run of vtach. I don't know how I got through all those meds but I can say afterward-when I calmed down that my BP dropped pretty low and I slept for 14 hours. The best sleep I've had in years. But because I was so tense(atleast I think this is why) I have some groin nerve damage. So I can't see me ever having an EP study done-but never say never---- I know. Anyone know if this sounds like two things going on at once or just POTS????

Veryblue, I'm glad you brought this up. I have been wondering the same thing. I have POTS and like you was thinking well then why does my heart rate wake me up from a sleep at 150+!!! It comes in spurts where it will happen several days in a month to every other month or so? Figure that one out. It also will wake me up being very irregular but not necessarily fast. It all scares the stuffing out of me. THere is nothing worse than waking up to that in the middle of the night. Hang in there and do try out a monitor if you haven't already.

a few more!! -anyone have chest pressure rather than pain - occasional deep sharp pain under left breast --is anyone on disability with POTS and is it recognized as a disability

Here are the questions that I didn't get answered during my appt. (it is some of them-I don't know if i can remember them all-I'm having a bad day today-very shaky!!) 1. Is it ok to have surgery(general) with POTS? 2. Is dental work safe, even if you are put under a "twilight sleep"? 3. What is the rate of deaths/serious complications with POTS? 4. Did POTS cause my leakage and aortic insufficiency and will it progress? 5. Do I need a potassium or magnesium supplement? 6. Will a pacemaker help with the HR and irregular beats and how do I know they are from the POTS and not something in addition to the POTS 7. DOes the sun, or just being outside make your symptoms worse? The summer is horrible!! 8. Is it normal to have veryfast heartrates (up to 200 but only rarely that high-usualyy up to 150-170), many PVC's and PAC's with runs, and feel like a machine gun going off at times. I know there are others-just can't think right now!! Does anyone else have these symptoms and are they normal POTS symptoms? --wake up in the middle of the night with heart racing, SOB, can't see well, clammy, sweaty --Does your heart race all of the sudden for no reason even when you don't change position --do your toenail beds (the white-moonshaped area) turn BLUE-not pale but blue --BP goes whacky with "episodes"- either real low, real high(140's/100) or just one number registers--is it still safe to try the Midodrine with these BP's --does anyone else have chronic neck and shoulder pain with knots --lots of leg pain and aches --has anyone else not been able to tolerate a bolus of iv fluids-when I got one my HR went up and I was very SOB --does anyone else feel like a prisoner to their own body???? -- is anyone else afraid to be alone or just always afraid of dying?-I don't share this with many folks! I think this is enough for now, thanks for everyone's help-hope you can read it-I am so shaky and POTSY today!!! Danelle

Jessica, Congratulations!!!What an accomplishment! You should be so proud of yourself. I have a suggestion-just a suggestion. Maybe you could do both. Maybe you could pursue your criminal justice and photography together. I will tell you this, if photography is your true love-go for it!! You are right, it would be more flexible and less demanding. And what's better than making money doing what you love to do? I know saying do both sound overwhelming and it probably is-maybe that is a bad suggestion but it is a thought. Take your time with whatever you decide to do. I know it took me a total of 6 yrs (on and off) to get my associate degree in nursing and I am going back in august to get my BSN(If POTS will let me) but I will be taking it slowwwwwly!! I haven't been in school in 8 yrs! The funny thing is my oldest son will be starting college at the same time!! Oh well, it's never too late. Good luck and keep us posted! Let us know what you decide to do. Danelle

April, I'm sorry you are having a bad day. It seems like they do come in runs of a few to several together-atleast it seems that way for me. I know that on these bad days you feel like you will never feel better but you will. Just remember what it's like on the good days. Take it easy and drink lots of fluids, do the salt thing and try not to stress out. I know that's hard when you are concerned about your job,---- I'm in the boat with you right now. I can't really say about the meds because I haven't tried any of those meds YET but I think that is coming in my near future. Looks like from what everyone else says Zoloft is the way to go for us POTS folks. Please know you aren't alone, you can vent whenever you want. I just did too!!. Keep your spirits up, there are better days just around the corner. I will be thinking about you and hoping for many good days in your future!! Danelle

Much thanks to all of you!!! You all are so wonderful. It felt good to check the site and see such responses and support. It means more than words can say. Jan, I do have a great cardiologist who I have been seeing for 17 yrs but was unable to dx me with POTS. He is unfamiliar with it-maybe now he will do some research on it. Actually the only test Dr Grubb did was the echo. He mentioned the regurg and insufficiency from that and it was also listed on my records from my cardio here. I was just never told. Maybe it isn't anything to worry about??? But I am a chronic worrier and that is putting it mildly. The MVP issue actually came up by me. I was told 17 yrs ago that that was my problem but then about 7 yrs ago I was told No, I didn't have MVP that I had inappropriate sinus tachy. I saw our local EP Dr and he is useless and very scary. I wouldn't let him work on my dog. Even the nurses that work with him say to steer clear. So I got my Dr to send me to Charleston where I saw a specialist on SA node ablations and he is the one who brought up the whole POTS thing. Long story!! 17 yrs worth in a nut shell. The staying calm part is the hardest for me but I know it would be best. I have underlying anxiety and panic attacks (which I know now are normal with POTS-Dr Grubb explained that to my husband too) I take clonazepam for it but it is still there-always. I will call and get an appt with my normal cardiologist soon and go over things with him but I know he is tired of seeing me. And I will be very persistent, that's the only way they listen!! And then sometimes that does no good. I have really gotten to where I find it hard to believe Drs anymore, you hear so many different things. And being a nurse in the hospital-actually seeing mistakes and knowing what goes on doesn't help either. I will be searching for the peace, and I know that I will find it-hopefully soon!! EM, You are so right!!! I have learned more from this site than anywhere else or from any Dr that I have been too. No one knows our bodies better than we do! I will work on manifesting my future and thinking positive thoughts! goldicedance, I haven't been to the Mayo Clinic-can they do anymore for me??? I guess I am willing to try but I am really getting burnt out on Drs and quickly. I'm not sure what to do at this point. Maybe the leaking and insuff. is just part of the normal aging process. I am 37 and Dr Grubb did say that he thought I was already showing signs of meopause which will intensify our POTS-URGH!! I haven't started the meds yet-I'm afraid to. Heck, I've gotten to were I am afraid of everything!! Merrill- I agree with the "holistic" approach to illness as well. I am so good at preaching it to my family and patients but am terrible at practicing it. I know that that is a must in order to find any balance in my life at all. Right now I am on a rollercoaster ride that doesn't want to end. Thanks for telling me about your irregular heartbeats, that brings me some comfort. Dr Grubb did tell me to try the Midodrine first because it would work faster but I am reluctant to do so because being the worrywart and nurse that I am, I look up all the side effects to everything before I take it(I have had bad experiences to meds in the past). During some of my "episodes" my BP has a tendency to go high sometimes 140/100 and I just don't know what the med will do. most of the time my bp stays low though 80-110/48-70. Don't know what to do!!! GOOD LUCK with the IVF, I so hope it is successful for you!! Morgan-I try and learn as much as I can about my problems so that I am not"ignorant" to what is going on-this really irritates my family though. They think I should just take my meds and do as the Dr says and quit looking into things. That is just not my nature. Another reason I guess I am very nervous about the rhythym problems is because I have never been able to catch the bad ones on a monitor and my father died with heart disease(I have a very strong family hx-dad had his first bad MI at 37 yrs old, his sister at 38) Sak-thanks for the reassurance about the weird heartbeats!! I hope you are right! Deb- I think I may try the florinef first-that is if I can convince myself to do anything med wise-boy is my family angry with me-and I can understand it but I am just scared. I am glad to hear that things are going better for you, there is nothing worse than our bad days when you feel that they will never end and you will feel atleast half human again. Thanks for thinking of me, I will think good thoughts for you as well!! Briarrose-I will list my questions shortly-let me see if I can find my old list! Thank you for asking for them!! Hugs, good thoughts to all of you and may we all become POTS free someday!!!! Danelle

Julie, I agree, I think Dr Grubb needs to slow down and get some additional help or he is going to be a pt instead of a Dr. I sure feel for him. I guess that's what happens when you are a specialist in an area where not many Dr's even have just a small amount of knowledge on the subject!! He's a great Dr but way too busy!! You are talking about neck and shoulder pain/discomfort-boy, I have that too!! Mine is very consistent but gets really bad at times. I have never been dx with any cervical problems but have never had my neck checked out. I have had two wrecks with bad whiplash and when I turn my head I can hear popping and grinding noises but I just chalked it up to stress/POTS/fibromyalgia/etc. I know if anyone goes to massage my back or just rub it, they comment on how rigid and "knotty" it is. I am sorry you are having so many problems, I know how depressing it can be. It seems like your whole body is just falling apart and I guess in a sense, it is. I too have the bowel problems. Sorry if I missed something, I am brain fogging today!! I bet you were in the office when I left. Don't laugh but I kind of searched around for others that might look "POTSY" in the waiting area!LOL Not sure what I mean by that. I was too shy to ask others. Hang in there, I will be thinking about you. Hope you get the answers you are looking for too!! Hugs, Danelle

Julie, my appt was that morning at 9:30, I saw him at 12. He had just admitted a fellow MD-must have been a very bad day. Wish I would have know you were there I would have loved to have met you. I was one of those ahead of you it sounds like-sorry for putting you behind seeing him-he spent maybe an hour with me-see my recent post-actually, just posted it!!! good luck-danelle

Hi all, I finally got to see Dr. Grubb on Wed. We drove all the way up there from NC. I must say that I am a little disappointed-alot actually. Dr Grubb was great but let me explain(or vent): My appt was for 9:30. When I got there, they told me he was already behind (which I had anticipated thanks to all of you for letting me know in advance), I thought "OK no big deal, I am ready for this and am willing to wait ALL day if necessary to see him": because I knew I would get my turn and be able to find out what I wanted to know. Well, I got to see him at 12, which was fine- I was just glad to see him, I was so excited. He apologized and told me he had to admit one of his fellow dr's so he was a little distressed(which is completely undertandable!) During our visit he was interrupted numerous times by the nurses and I could tell he was getting annoyed-nonetheless he was very cordial and continued with my exam. He did a quick echo and did TONS of education on the computer about POTS(which I had already researched myself-thanks to this site!) The bottom line-he officially dx me with POTS, told me I had some mild MVP, mild mitral, pulmonic regurg and mild aortic insufficiency. He did ask lots of questions but I had taken in a 3 page list of sx and questions. Unfortunately, we didn't go over all the sx or get to the questions because as soon as he was completing the education process, the nurse came in once again and said he was now 6 pts behind. He wrote me a Rx for midodrine and for florinef (I am already on atenolol and klonopin) and then concluded our visit quickly. I went out of the room and asked him if I could give him my list of things and he put them in my chart. I left feeling worse than when I went in. I went back to the hotel, barked at my husband and kids and then left, found a quite corner and cried until my son found me. I just felt like I hadn't gotten any of my most important questions answered and I was left hanging. Later that afternoon, I wrote down some of the questions, took them back to his office and left them with the secretary but I still don't recall which ones I left and what I forgot!!! Not only do I have POTS but now have some regurg and aortic insufficiency(which he really didn't talk about at all other than to tell me not to worry about it) I feel like I am going to die. I asked about my arrythmias and he told me he didn't know if they were serious or not until he could see them on a monitor but didn't get me one. We discussed several meds in the education time but he just handed me these 2 prescriptions and that was that. I feel like maybe my trip was a waste of time and LOTS of money. I don't know when I will get back, I have so many unanswered questions and now my anxiety level has risen greatly-which we all know we don't need!!! On our way home yesterday we stopped at a rest area between Dayton and Cincinnati and I had been feely pretty rotten most of the morning-well guess what happened?! I got out of the car, felt kinda dizzy, but no more than on my bad days. I get to the bathroom and start out the door when I felt faint, I felt my heart racing and quickly found a place to sit. I went to the car-by the aid of my husband- and took extra atenolol and klonopin-it took forever to work but finally did somewhat and we managed to get home at around 7 last night- GOOOD GRIEF!!!! I have so many questions I don't even know where to start-any suggestions? maybe you all can help answer some I don't know- I just feel horrible and feel like the trip was a total washout!!!! Thanks for letting me vent!! Danelle

Hi Sue, I TOTALLY understand!! To the point that it is sickening. My family just doesn't understand either. They all think that when I start to feel bad, weak, shaky, etc that I will be just fine. But nothing makes me madder than when they call me lazy! I all ready have so much guilt and low self-esteem because I am not able to work full-time(can't even make it to work sometimes), I can't be super-mom, super-wife, etc etc etc. Lots of my family say "you just need to exercise"-well, I tried a cardiac rehab program with one on one help and I just couldn't do it. It was either that or work and I couldn't do without my income. My family said I should have stuck with it longer and it may have helped-it may have killed me too-atleast it felt like it. I would have to sit outside for 30-45 minutes afterward just to be able to walk to my car. Meanwhile all these older folks 70-80yrs would just exercise away and go out to lunch afterwards-URGH!!! I sympathize with you so much. If your like me, you feel all alone. I have even told my family several times to please get on this site or any site and learn about POTS but NOONE has taken the time to do so. They would rather just tell me that I am ok and I'm lazy. It has really put a wall between me and my husband, in particular. I just know that if a family member of mine had a chronic debilitating illness I would want to learn EVERYTHING I could about it. Like you, I am SO thankful for this site. I feel like all you guys here are my "other" family that I can talk to and do understand me. And for that I am greatful-very greatful. I too don't go many places with my family unless it is absolutely necessary and that is a true shame because I am also afraid to go anywhere alone-so I just quit going places. That means even the grocery store. I feel like a prisoner to this thing and I am sick of it!! Sorry to rattle on, I just want you to know that you are not alone in this thing. I'm not sure why our families are the way they are because we know that they love us but sometimes they have a **** of a way of showing it!!! PS I decided to drive to Dr Grubb's instead of fly-i just don't want to take the chance of having any complications. I wish I could meet you but I think you said you are going home Tues evening? My appt is Wed morning and I will be staying at the Hilton-thanks to everyone for that info. I will be there Tues. Maybe I can catch up with you then, just let me know. Vent with us anytime, because WE ALL understand!!! Let us know what your monitor showed. Danelle

I'm an RN too (have been for 8 yrs), BUT my symptoms started long before I got into the medical field. Not quite sure where mine stems from. I know it shows it's ugly head after the birth of my first child but I think some of my family members may have it and just haven't been properly diagnosed-Imagine that?!!!!!! Danelle

Jackie, I am SO sorry to hear that your appt was cancelled!! That is so terrible. I don't know what I would do if that happened. My appt was made in Jan. and was originally for August but I called everyday asking about cancellations and FINALLY on Wed. the told me he had a cancellation on the 28th so I grabbed it. I hope she doesn't call me on Monday and give me the bad news too. It sounds like you didn't have such a good experience with dr grubb. My husband is afraid that I am expecting too much from this trip and am going to be disappointed. Maybe I am, I don't know....... Just wanted to say sorry, I truly hate that for you. Wish I could share my appt with you-I would. WHen are you rescheduled for? Danelle Thanks to all who responded!!!!!!!!!

Sue, thanks for the info! Maybe I'll see you there! R U driving, if so from where? Danelle

I'm not really sure. I just recently got the dx of POTS and I go see Dr Grubb in a few weeks. I'm hoping he will have lots of input on exactly what is going on with me!! Danelle

Hi everyone! I have a question and I know Calypso asked this not long ago but here it goes again. I have an appt with Dr Grubb on April 28th(Yeah!!) and it is about a 10-11hr drive for me. I know riding is difficult for me-it really makes my legs ache! My husband wants to fly because it is quicker and we only have 3 days total to make the trip but I am terrified. I haven't flown since I was a very young child. It's not so much being nervous about flying in itself but I am SO worried that my heartrate will go wacko or I won't be able to breathe good. I read the responses about lots of fluid and salt and I would definately do that but I am just so afraid of the heartrate/rhythym/breathing thing. I would be on a plane the first time for 2 hours and then after a 3 hour layover it would be another 70 minutes or so(I think on a smaller plane). For those of you that do have bad symptoms-what are they and how do you deal with them on the plane-how fast or irregular do your heartbeats get? My husband is very aggressive about going ahead and flying(it's not his systems that will go crazy!!) but I would love some more input from my expert friends who have flown before. I know when I get in a swimming pool, there is a lot of pressure on my chest from the water and it is sometimes difficult to breathe, I'm just wondering if this is the same kind of thing. Is it safe to fly???? ANy input is greatly appreciated!! SUE, congrats on the birthday, wine and cheesecake!!!! Thanks to all, Danelle

Hi Ladybug, DITTO to what everyone else has said! I'm so sorry to hear that you are feeling badly. Just know that you aren't alone and that you will find lots of support here by people who know exactly what you are going through. Here is a little about me so that you know I DO understand what you are going through.---- I am a 37 yr old RN and I was just diagnosed with POTS recently. I started having symptoms at the age of 18. Up until that point I was very athletic and energetic. Since, I have not been able to do much physical activity at all. I can relate to you when you say that people your age should be out having fun, and the last thing you should have to worry about at that age is your health. I got married at the early age of 17( 10 days out of high school) and then 14 months later had my first child-which is when my POTS symptoms first started. I have been misdiagnosed for 19 yrs. Talk about depressing!!!! I was beginning to think this thing was all in my head. I know how you feel and I hurt for you because it isn't fair. About school, I too was in nursing school-the first time-and had to withdrawl because I was put in the hospital. My dx at that time was syncope(passing out). But I think they thought I was just having a "nervous breakdown". I wasn't able to go back to school for a few years but I finally did and got my RN in 96. It wasn't easy and many times I wanted to quit but I didn't and for that I am so thankful. So PLEASE don't give up on your dreams!!Over the past year my symptoms have really gotten worse, Im not sure just why but was FINALLY diagnosed in Nov. I go to see DR. GRUBB in Ohio in July and I am hoping that he will be able to help some. I am on atenolol and clonopin right now. I have been on the atenolol for 17yrs-it is a beta-blocker which helps to keep my heartrate down somewhat. I couldn't function without it. The clonopin is for anxiety because this whole thing makes me anxious-especially when your heart is racing, etc. My advice to you is to be thankful that you have such a wonderful, supportive family. It sounds like they love you so much!! And yes, I think most-if not all-of us POTS folks have many feelings of guilt. I know that is one of my main obstacles right now is to try and get over the guilt of not being able to work full-time(sometimes not much at all!), be a great mom, wife, housekeeper, cook, etc but please try and not feel guilty. It isn't your fault and it is out of your control-don't let yourself go down the guilt trip road. It only makes it worse. ANYTIME you need us, just let us know. I get so much support from this site and I only found it less than 2 weeks ago but it sure does help. Even if you don't respond sometimes just get on here and read what everyone else has to say. Take care and be thankful for your family-which I know you are- and don't beat yourself up about anything. Your life probably will change somewhat with POTS but don't ever give up on your dreams-they just may be a little harder for you to obtain BUUUUT you CAN do it!! I'm routing for you. You will be in my prayers as well as everyone else with this crazy POTS thing!! Danelle

Hi Paige, thanks for the reply. I too am a nurse!! Why do you say that you used to be a nurse? Do you have to go on disability? I live in western NC and can't find anyone remotely close who has POTS. I would like to hear more about you and how you are doing, what kind of sx you have, etc. This dx is rather new to me even though I have had problems for 18 yrs now. They just seem to be so much worse. Don't know if it is my age(37), stress, or what-I just know I don't like it and it is causing major problems for me. Not just the horrible physical and mental stuff but the financial and marriage problems that I guess go along with a chronic illness. Who do you see for your POTS? I have an appt with Dr Grubb but not until July! I would be willing to go across the world to get better-have any other suggestions? Hope to hear from you soon-Danelle----what part of Alabama are you from?