danelle

Amy, I also have wide ranges in my BP, but it usually runs on the lower end. And more frequently than not, my pulse pressure is very narrow (90/80, etc) Sometimes I only have one number for my BP I am on atenolol for my heart rate not my BP but I guess it lowers it as well. It helps keep the higher end of my tachy away but I still have some daily. Hope this helps Not sure about the heart damage, all I can say is that the MD told me that I have 3 leaky valves but that it is very mild and of no concern (Maybe not to them) But the stucture of my heart is "normal". Danelle

I get these on a daily basis. Several times a day to almost all day long. Sometimes worse than others. They scare the crap out of me even though I have had them for almost 20 yrs. Sometimes they even make me feel faint and unable to breath. I find that they are worse around my period, when I am stressed or tired and if I get too hot. Hope this helps. Try not to worry too much and go ahead and get an event recorder. Maybe it will ease your mind some. Danelle

MM, More good thoughts and prayers are coming your way! I will be praying for your friend and baby! Keep us updated. Danelle

Thanks bunches for everyone's kind words and support Sorry it's taken a little bit for me to get back to you. Still pretty depressed. But all your support sure does help. Maybe something will work out soon. Thanks again-you all are the BEST!!! Danelle

Hi all, just got back from another visit with my cardiologist and of course, left crying . Why do I keep doing this to myself? Anyone know? I went to discuss my visit with Dr Grubb. I have had this cardiologist for 17 yrs now and I though he was a pretty caring Dr but today something was different. Can't quite put my finger on it He basically asked how I was and I told him virtually getting to the point of nonfunctional. I expressed my usual concerns an how things have deteriorated for me greatly over the past year or so. My sister even went with me and expressed her concerns as well. We didn't get much of a response at all He looked over Grubb's dictation and recommendations and asked me if I had a GP and I told him that I was inbetween two right now(I will see my new one next month). He told me that I was his first and only POTS pt and that I needed to be following up with a GP rather than with him. He gave me a new RX for Wellbutrin and that was that. Folks, I am ready to call it quits on the Dr's and just fall apart. I am truly close to being nonfunctional to the point of losing my job. I am still able to do little things around the house but with many many breaks(such as writing this message). I am close to losing my house, cars, etc. but more importantly my husband. We have been married for 20 yrs on Thursday(high school sweethearts). The stress of my illness, finances,etc is just too much. He has been kind and patient for the most part but that is nearing an end, I see it daily Not quite sure what to do, just needed to let it out. I am now in a major depression over this **** thing and am about to lose EVERYTHING I have and it seems like noone cares(especially the dr's) and the certainly don't understand.... Isn't that the story of our lives?! Til later, Danelle

You can count me in! I will be glad to help as much as I can. Right now is a very POTSY time for me and has been for a few months now but I am sure willing to do whatever I can, I think it is a wonderful idea. I am so sick of people and dr's not understanding us. And like you, I think the only way to help educate them is through those of us who know it best!! We POTS folks!! Let me know what I can do, and in the meantime I will be thinking of ideas! Danelle

Jackie, Boy, you're appt sounds almost identical to mine!! I too went through the same thing. I had typed out all my questions, had them in sections and put all my symptoms and problems in order as well. We never got to any of it, I handed him the papers as I was leaving(he was already in the hall) and he put them in my chart. That was in April and still no response. I live 11-12 hours away and don't forsee being able to go back d/t having problems on the way home last time and my sx getting worse. He did give me an Rx for florinef and midodrine but haven't tried either yet because I have too many questions about them and it sounds like they work for some people but not for long. I too am on atenolol 50mg/day. I have been on it for 16 yrs but have had to increase the dose over the yrs(I started at 6.25mg) It generally keeps the real rapid stuff away but that is about it, I still can't do anything physical. I am also on klonopin-which is like a long acting xanax, and if I didn't have that I would be in a state of panic 24/7. I have been taking it for yrs and I don't feel bad about it anymore. I feel it is no different than taking meds for your heart or lungs, etc. I do still have lots of underlying anxiety that it doesn't help with but if I took enough to get rid of that, I would always be asleep. My current problem is that I haven't been able to work much at all lately (4-8 hrs/wk) d/t weakness, fatigue, shakiness and feeling like I am going to pass out all the time. This has been going on for about 2 months now and it is really putting us in a financial mess-which in turn is putting more stress on my marriage which it definately doesn't need right now either. I just wish things could be half normal again. I have had POTS for 18 yrs but just dx this yr(had many wrong dx over the years) Things are just getting much worse, I think it might be that I am getting a little older(37) and having some hormonal changes. I don't know if that is it or not though. Gosh, sorry to rattle on. Just wanted to let you know you aren't alone and don't feel bad about the xanax. Wish I had some myself, it would help me cope better(can't afford counseling right now) SOOOOOO, what do we all do? It's such a guessing game and I too am so sick of dr's, hospitals, tests, etc etc and nothing makes you feel better!!! Sorry to vent but thanks for listening Danelle

YEAH . I'm so happy for you. It is always nice to hear these "good day" stories too. Unfortunately the past week has been h$*& for me but hearing your story lifts me up and reminds me that there are better days just around the corner. THanks for sharing and have a great time shopping Danelle

Hi Sue, Just wondering, how far away do you live from Dr Grubb? It seems like most, or lots, of people with POTS, etc live in the north. Have you found that to be true? Danelle

Susie, If he is only an hour away and your appt is not until Dec, I would wait until closer to time to make my decision. Just because it is SO hard to get an appt with him. And the fact that you have one of the earliest appts may be a plus. You can always cancel it later. By the way, my name is Danelle, some of my friends call me Dani for short but I answer to pretty much anything-LOL(especially with a husband and two teenage boys) Let us know what you decide! Have a great day!! Danelle(Dani)

I really don't want to advise you one way or the other because I know that Dr Grubb appears to be excellent in the POTS field. However, I had a similar experience with my first and only(so far) appt with him. He dx me very quickly and did some excellent education with me on POTS(which I had researched prior to my appt) so I was familiar with all of it. BUt when it came time for our question and answer session, he had to end out appt because he was so busy . I did hand him my list of symptoms and questions that we never got to go over but I haven't gotten a response yet and that was 4 weeks ago. I have callled the office a few times but IF the nurse does call back it is several days later and they aren't very friendly. I know they are very overworked but if their job is too stressful that they start taking it out on the pts then they need to take a break or work elsewhere(I am a nurse and no matter what kind of day I am having physically, emotionally, or whether you get the pts from h***, I can honestly say that I have NEVER treated anyone without the utmost respect and kindness. It took me 6 months to get into see him and that was with a cancellation appt. Otherwise it would have been 9 months. I drove for 11 hours to get there So I'm not sure if I will go back either. It was a disappointing trip-just because I felt like I was left hanging. I had a very bad spell on the way home too at a rest area and didn't thing I was gonna make it Anyway, how far away do you live? When is your appt? Are you going for med reasons or a follow up? I guess I would take all of that into consideration before I would go back. I guess I would if need be because he is great and knows his stuff but if he doesn't get some help, he's gonna be in bad shape himself!! Sorry I couldn't be of more assistance to you. Let me know what you decide to do!!

Julie, I know it's been a long time since you posted this but I was just looking back on past posts and came across this one. I am from NC too. Does your friend have a computer yet? If not, let me know and I will get her a letter in the mail when I can

Thanks to all of you who responded!! And I always take what all of you say lovingly so don't worry about it. I know I need to try the meds and I am ready to do so. I just need to wait until either I'm at work again or someone will be home with me most of the day. You all are right, I won't know until I try-It's just the fear taking over right now. The whole thing is scary. As for work, my coworkers are very supportive even though they don't know anything about POTS other than what I have told them so they are very supportive but I don't think they quite get the gist of how debilitating it can become. I went to bed early last night but I tossed and turned. For right now, I feel somewhat better but still weak and shaky This thing is just so unpredicatble-one minute you are feeling descent and the next you are crashing.. Thanks for everyone's concerns-it means so much to me. I am still pretty depressed today though. It just keeps getting worse. I'm sorry if I missed anyones questions. I will look back and check and reply if I did. Thanks again, you all are great and I don't know how I made it this far without you guys!!

Karen, I take atenolol as well. Usually 50mg a day sometimes a little more depending on my sx. If you don't mind my asking, which DR told you that only sinus tachy was related to POTS and not the other rhythms? THat is given me some added concern. I am waiting for a call from Dr Grubb's office today and I will ask them again about what is my understanding and I will let you know.

Mighthy Mouse, I also have inverted T waves-have had for yrs. Do you also have SVT, PAC, etc with POTS? Now I'm wondering if something else may be going on as well as POTS but I do think that Dr Grubb told me that you can have SVT< PAC and afib with POTS but I am having major brain fog today so I maybe wrong Karen, Yes my HR does occasionally wake me up at night racing(150+) but it typically goes that fast upon standing or with ANY physical activity whatsoever and this is with my beta blocker. I can't imagine what is would be like without it again(Ihave been on it for 16 yrs now) but it doesn't work quite as good as it used to even with higher doses

Futurehope, Thanks a million for responding to me.! I sure need some support right now. I know exactly what you are saying, exactly. I just feel like such a failure as a wife, mother, nurse, etc etc etc. I really don't know what we will do without my income but right now I honestly can't do much of anything. Even typing is making me all shaky This thing makes me angry and sad and helpless all at the same time. And no, I definately wouldn't expect someone else to work under these physical conditions. I guess we are just too hard on ourselves. I sure hope you can get your disability too !! Would you mind sharing with me what you tried before you decided to file for disability(as far as meds and treatment go) and what steps you have to take to get started with it?? Good luck I will be praying for you and keep us updated on how things go!!!

Karen, I agree 100%!!! I too have developed anxiety and panic disorder due to this crazy thing. However, I really don't remember what life was like before it. I started having sx at the age of and haven't been right since. No exercise, no outdoor activity, etc etc etc It's like being a prisoner to your own body. When I was in high school I was very active though so I do remember just a little bit. Things have gotten considerably worse for me over the past year, I have had a pretty steady decline . What kind of strengthening tapes do you do? I can't even walk without feeling like jello!!! I have tried some very mild stretches but I end up with the same result-jello

good grief very blue!! Did you have to get treatment for it or did it go away on it's own?? I can't really help you with that but I know that typically with meds if you are going to have a severe reaction it is usually with the 1st or 2nd dose, however, people have been known to develop allergies to meds much later Could it have been anything else, maybe? Did you pass out or have any other symptoms? I would just run it by your Dr before you take anymore just to be on safe side but you do what you feel is the right thing to do Keep us posted

Sue, Dr Grubb recommended this for me too. I haven't started yet because I don't have access to an indoor pool. My sister has an outdoor pool which I can use some this summer(she lives 40minutes from me). My concern is that my heartrate goes up so quickly that I don't know if I will be able to do it!! Just walking down the 2 steps to get into the pool makes it go whacko-either fast or irregular. Please let me know how it goes.

Hi, I have POTS and I have had SVT, PAT, sinus tachy, lots of PVC's and PAC's. Small runs of PVC's and PAC's as well. I just assumed this was all part of the POTS thing. My HR gets up to 160's and higher occasionally and that is with 50 mg of atenolol but it does control the higher stuff for the most part. Is this NOT normal for POTS?? Khudsonwv-so sorry to hear your story, hang in there and keep talking with us!!

Hi all, I need to vent a little and get some advice. Today has been horrible for me I went to work and was there only an hour when I had a spell. I was sitting at the desk and I felt like someone had hit me on the head with a ballbat or hammer. I could feel myself going out. I put my head between my knees and was able to compose myself after several minutes. When I was able to get up, I went into an empty pt's room and checked my BP. It was 130/72 which is high for me(normally 90's/50's60's). My heart was pounding but my HR was only 78!! I continued to feel somewhat disoriented even though I could function(somewhat). I tried eating something and sitting for a while but still was extremely dizzy and weak beyond words. To make a long story short, I ended up leaving work-had my son come and pick me up because I couldn't drive I came home and took a 3 hour nap!!! I do feel some better, but continue with the dizziness and weakness. This is the 3rd time I have had to leave work in the past month and I have had to call in and cut my hours back to near nothing. I am now working 4-8hours/wk and it is not paying the bills I have had POTS for 17 yrs but recently dx. I just wonder is something else is going on as well. I have had every test known to man and they all turn out ok. I just find it hard to believe that this thing can cause so much turmoil. ... The only meds I am on now are atenolol and clonazepam. Dr Grubb wants me to try Midodrine and Florinef(but not at the same time) Being the nurse that I am, I have read about all the side effects to these meds and boy are they scart I am ready to give in to this thing and check on disability. I can't keep playing with my job because I am going to lose it. I can't function well at home much less at work I do drink tons of water and gatorade as well as the salt thing. Now I am afraid to drive because what if this sensation hits me while driving??? I could go on and on but I won't, thanks for listening Does anyone know if you have to have tried every means of tx before you can apply for or receive disability and how long it takes to get it???My family can't make it long without my income. Somebody please help--I feel like I am going to lose it, I am getting EXTREMELY depressed

Before I started my beta blocker(atenolol) 16 yrs ago, my heart rate would go over 180. Since being on the med, I have had to increase the dose many times over the yrs but it helps to hold down the fastest stuff. However, there are still times that I get up to 160, just not near as often. Also, on a daily basis, my heart rate will go over 120 just upon standing and even higher with ANY activity. I have many irregular beats too. Even though I have lived with this for 17+ yrs, it is still very scary for me . I just can't seem to handle it as well as others. Especially when my heartrate is very irregular and I feel like I am going to passout or die. You are not alone. Try and not be scared. Yeah right, that's what I tell myself everyday. Hang in there and let me know how things go for you!!

Much Thanks!!!!!!!!!!!!!!!11

OK-Maybe I'm just a little slow(I'll blame it on the POTS!!)LOL or maybe it is all the bleach on my hair but how do you use the clickable smiles? Everytime I try it comes up with weird letters!!!! What am I doing wrong???

Yes, Teri sounds like a life saver! I know that has to make a HUGE difference. I do have some support at home but not what I need. As far as the caffeine, I haven't had any in over 7 years(I'm sure it's been much longer than that). It used to make my heart skip and beat too fast-like it doesn't do that enough on it's own!!! Maybe I will try baby amounts of caffeine and see if it may help some. I still haven't tried the Midodrine-I'm just a chicken I guess. My BP usually runs 90's/50-70's and I'm just afraid to try it. I'm a little irritated at myself for that but it's just where I am right now. Anyway, thanks for the info(again). You should be extremely proud of yourself and tell Teri she is great from all of us other folks on the site!!