danelle

I was in the shower yesterday and came up with an idea Would it be possible to write some specific info about POTS and dysautonomia in a letter, either along with personal accounts/stories or without, and have EVERYONE(that we can reach, that is) that has these illnesses or families and friends that are affected by it sign it-online or paper-and then send it off to as many tv shows, papers, magazines, etc. to get some recognition but more importantly get the public and medical field educated on what we go through? I know that MANY of us have written to people individually but I wonder if it were a group effort if it would be more effective? I will be glad to get this started or if there is someone out there with a great knowledge and wonderful writing skills that would like to help with the letter part, that would be great too. If not, I would be glad to take the time, do some more research, and get my brother's help-who is a journalist(excellent at that) get this thing going. What do you think, is this an option, would it work? I am just willing to do anything to get the population educated about this and how it affects every aspect of our lives. THEN I will start with SSDI education-actually I am working on that too. Let's get on with it and get something done! Please let me know what you all think. Danelle

DITTO , what did they put you on?

Morgan, Interesting info! Good grief, I think half of us on here are nurses. Interesting I do know now that I was born with my POTS though but it is just interesting how many nurses have POTS. It is comforting to know that you, being a cardiac nurse, don't get panicky. I try not to and I can usually handle some tachy and arrythmias here and there but when it gets bad so do I I guesss you have seen your share of arrythmias at work, maybe I should just relax more and go with the flow-quit fighting it so much(I am so OCD, it is ridiculous ) Sophia, I think alot of us have T-wave problems, that's interesting too. Also, one of the doctors told me about passing out all the time too because of the POTS if the ablation was unsuccessful. I appreciate your input!!

MM, Thanks for the advice, what you say makes sense. I DON"T want to do it but at the same time when these whacky rythms get into their groove I get light headed and THEN I start freaking out, it is just a psych problem that I will have to deal with. I have major panic attacks at those times and that makes it worse(you know the vicious circle). I just don't want them to kill me, BUT I don't really want to get that topic started again It is truly something I will have to work through. Morgan, Did you have a very reputable Dr do your ablation? The symptoms that you list are similar to mine now, without an ablation, and with a beta blocker. I guess I had better leave well enough(whatever that means) alone. I really appreciated all your input. What are they doing for you now-medication wise or in anyway? Steph, AWWWH, you are SO sweet!! I appreciate the compliment. I have aged dramatically over the past couple of years though and it really shows. And by the way, you are very BEAUTIFUL as well. It sounds like in your case, you were lucky the ablation didn't work. As for how the arrythmias affect me, for the past 19 yrs, I haven't been able to do what I did prior to having them. My life has totally changed. To be honest, I can't remember what it was like without POTS and arrythmias. I really can't. I do dream about it. It would be like hitting the lottery. As for the past 2 yrs-living h$!!. As for stopping my BB, I have tried that several times (gradually of course), each time I would have major tachy and high BP within 24-48 hours and end up in the ER or for a wonderful stay in the hospital. That isn't an option for me, however, I think it may be part of the reason I can't breath good at all(the BB). I get so short of breath just trying to walk throught he house(when I am able) and sometimes I wake up SOB, it just goes with the territory I guess As for doing an EP study, I am to a point to where I would If I really needed to. But let me tell ya, I am one who is VERY sensitive tomeds and it usually takes very little to work on me IF I can even tolerate it. But when I had a heart cath done last yr or the yr before they gave me 50mg Benadryl IV, 10 mg Valium before I even went to the cath lab, then they gave me 3 doses of phentynyl(spelling?) and several doses of versed because I kept asking for more. I remember the WHOLE procedure, who was there, what was said, EVERYTHING. The worst part is when the dr got to my heart and said "now your going to feel some funny beats as we go into the heart" no more than he said that, he started into the heart and I had PVC after PVC(run of V-tach). I screamed for them to stop and they stopped the procedure right then. After it was all over, I slept for 16 hours straight. I do remember hearing the nurses saying "Her pressure keeps dropping, it's 80/40" I opened my eyes and said"that is ok, I am just tired, I am alright" I think they thought I would crash on them. Once again, they had no clue about POTS I only saw Dr Grubb once last April, we basically talked for about 1 hour and he did a very quick echo, but no testing other than that(oh yeah-an EKG). I don't know if he would be able to tell me what to do or not. Thanks for the kind words Corina Mary, yeah we have had a lot of convo's about this stuff. Maybe I just need to do some different meds but I think we have tried EVERYTHING out there No kidding. I look to talk to you more about this soon. Hope Marissa is doing well, as well as you and your migraines. Love ya Maybe I will just wait until Derrick's symptoms and meds get under control. I just can't bear the thought of leaving behind my boys-Derrick with POTS-which I can only understand completely and PJ with some other issues-that no one else would understand. Noone treats or cares for their children like moms. They need me too much-more so now then when they were little. Thanks to all and keep the replies coming. I love you guys, You are the best, Danelle

Persephone, PLEASE hang in there. We all have times like that. Atleast I can speak for myself. I feel that way VERY often. I first started having symptoms at age 18 and have never lived "normally" since. THings have just gotten prgressively worse over the past 2 yrs. But everyone is different. You may get some good answers and be able to be treated to where you can live a normal life. Don't take this the wrong way, but as a friend, I feel the need to tell you not to get your hopes up TOO high. I was like that when I finally found out what I had last yr (POTS). I was hoping DR Grubb was going to give me a miracle cure. I left crying my eyes out, he was wonderful but truthful. It's just the same with my son, 17, who just got diagnosed. He is going through a rough time learning his limitations and going through the whacky symptoms, trying to function and keep his head up. I can't even tell you how I feel knowing I gave it to him. I don't even want to go there. Also, PLEASE don't let ANYONE, including the drs, to tell you it is in your head. I went through that for 18 yrs. When I hear that I see red. DOn't doubt yourself. You knkow your body and you know something isn't right. Try and look at it as a positive note, atleast you will have a name for what is going on-other than it is "all in your head". I remember one time being put in the hospital when I was 22 for a "nervous breakdown" even though they put down my diagnosis as syncope. They kept a monitor on me the whole time( I was there a week) and my HR ranged from 40's-200. I don't even recall what my BP's were but they were whacked out. Yeah, that sounds like a nervous breakdown to me. Not being able to stand due to passing out, V/S out of whack, etc. Just don't give up. I have to keep telling myself that as well. It is so hard because NOONE understands what we are going through but each other. No matter how hard they try-or don;t-NOONE truly understands us. My gosh, it's like having every disease and condition compounded into one. I am so sorry you are having a hard time. I really can't recommend many tests because all I have ever had was monitors, holters, ekg's, echos, cath, stress test, tilt, labs, CT of the abdomen, and an MRI of the head. I have never had a full workup with a neurologist, endocrinologist or some of the others that I have read here. As a matter of fact, I saw a neuro for a VERY brief visit and he said he didn't know anything about POTS and left the room. I have often wondered if I would benefit from all the other consults that many people here have had. I wish you all the luck and hope in the world. If you ever need to talk, email me personally if you would like, I check my email often. Wish I could be of more help. Sending you many hugs, Danelle

MM, Your EKG sounds similar to mine. Do you have the other arrythmias that I noted as well? Persephone, Don't know how I missed your post earlier What kind of arrythmias do you have documented?

Morgan, Did you have the symptoms I listed before your ablation? If not, what kind of arrythmias did you have-please be as specific as you can. Thanks for your help. This may sound ignorant because I am a nurse but what kind of a dr is a ans dr. I know itmeans autonomic nervous system but what kindof md would tthat be? I'm so sorry you had such a horrible experience. I have joined the pessimist group too You are silly! Nina, Hello stranger!! Would you be more concerned with the arrythmias or the ablation? I know you have told us before which one you experience becasue of the POTS(I just want to know if these are "normaL" for POTS, would you refresh my POTSY mind please

Lisa, It sounds like you are in with an excellent group of doctors who know what they are doing. I have personally seen Dr Grubb myself. I wish you all the luck in the world and I hope it does give you your life back. If it does, save me a bed cause I'll be headed in that direction (I'm from NC) Hugs, Danelle

Long story short-have had arrythmias(PAC's, PVC's, Runs of both, SVT, IST, couplets, triplets, multifocals, etc) and sinus tachy for 19+yrs. I have been misdiagonsed until a year+ ago. My dx is POTS with the documented above things. Dr Wharton in Charleston and I think Dr Grubb too told me that there is a possibility that Ihave more than just he POTS going on cardiovascularly. If so, they seem to think it is probably near the SA node rather than the AV node. At any rate, I am on atenolol(have been for 18 yrs), not working as well as it used to but they kindof left an EP study up in the air. What I want to know is, IF there is a possibility to have POTS AND another electrical problem at the same time? I DO NOT WANT to go through an EP study or ablation unless these things are life threatening and will make me better. I had a cardiac cath done about 1 1/2 yrs ago and I freaked out during the cath and made them stop. Needless to say, I am beyond TERRIFIED. I have read all the posts that I could find the word ablation in and none sound reassuring. I do have a severe case of POTS and am filing for my disability at this time. What do you all recommend? What do you think? Your opinions and experineces mean so much to me. I just wnat to get rid of these crazy rythms and tachys. I am SOOO sick of them. THey scare the daylights out of me, even after 19 yrs. Thanks, Danelle

Lisa, Have you had your ablation yet? I am getting ready to make a post about my situation and just wondering how yours went. danelle

THanks to all your responses Morgan, My heart breaks for you and Jacob. I am SO sorry that you both are going through this. Maybe I need to quit complaining so much. Please keep us updated on his condition. I will be thinking about your both frequently and you will be in my prayers. JLB, how wonderful!! Proves that sometimes we just don't know what is going to happen, good or bad. Thanks for all your kind words and reassurance. You all are the best. Hugs, Danelle

Mary, it's good to hear that things went well for Marissa I am sorry aobut your migraine, I know how bad they can be for you. Hang in there and I will keep you both in my thoughts and prayers, as always. Hugs, Danelle

Just wanted to update everyone on Derrick. He went to the cardio yesterday and he decided to give the klonopin a try I am glad because the few times he has taken it recently, it has REALLy helped his POTS symptoms. We still have a LONG way to go, though, to getting him feeling better. He broke my heart yesterday. He was talking about how things that he used to do with his friends(weight lifting, sports, etc) that he can't do anymore without having some really bad tachy and symptoms. When he was discussing this with the Dr, he had tears well up in his eyes. This is so unlike Derrick. It just tore my heart out again. The doctor was very compassionate and understanding with him but at the same didn't give him any false hope, just lots of encouragement(which I really liked). We have really lucked out finding this doctor. I think God send us to him, or him to us-I really do-even if it sounds corny. It took me 18+ yrs to get my dx and to find a dr-12hours away, that even would listen-Dr Grubb. I am so thankful that Derrick, and now my new Dr, moved to this area and knows about POTS. Not only that but his compassion and understanding is a rare find. Anyway, I don' t know what I can do to make Derrick better and it kills me. I see pain and fear in his eyes, disappointment, but not ONCE has he ever blamed me. Not once has he ever said "why me", he rarely complains unless it is very bad. He is such a unique individual and I actually look up to him, I admire his strength, determination, etc. Instead of worrying about himself like most teenagers do(believe me, he isn't your average teenager-thank God-he is so much more mature and intelligent) he worrys about me. Not only if I am feeling bad, but he never wants to worry me or anyone else. He is the type that would pass out before saying anything to anyone to keep from worrying them. I may complain from time to time and feel like things are so unfair(which life ISN"T fair) but I couldn't ask for two better children, I honestly couldn't. That's the update!

Oh Mary I'm soooo sorry Reading your posts make me so sad. My heart aches for you and little Marissa. I wish there was something I could do. It's awful when we feel helpless especially when it comes to our chlidren. You are both in my thoughts and prayers. Please keep us updated and I sure hope your weekend goes ok. You know you can call me ANYTIME you need to talk, so please don't hesitate. Hang in there and remember to take care of yourself as well(the best you can in this situation). You don't want to get in a POTS hole yourself. Please call if you need me. Love and hugs, Danelle

Morgan, You are so funny Ditto to your post-by the way, i get them when I lay on my sides too(particularly the left side), and with green eggs and ham, etc etc etc Danelle

Steph, Many prayers and hugs are sent your way for a rapid recovery! Keep us posted when you can. We will be thinkingof you tomorrow. Danelle

JLB, You can count me in. I have them so bad sometimes I can't breathe without getting them. Food is pretty much a no-no for me. 90-95% of the time I live on liquids strictly for that reason and because I always feel SOO full, even with just liquids. I am on a betablocker but it doesn't really help with the irregular beats and the lower tachy(up to 140ish) It does TYPICALLY, but not always help with the faster beats. I have been havning lots of problems lately with this though. SOunds like a lot of us have. I know I have talked to you before but you could please refresh this POTSY memory what is your exact diagnosis(s)? Hope your evening goes better. Hang in there. I am like you, after 19 yrs(almost 20) of this crap, I'm sick of it. It has just gotten worse over the past couple of years though. But we are both still here, that has to mean something I Hope!!! Danelle

Hi I just got your email!! R U on right now?

Morgan, Thank you for your kind words. I agree with you about the benzos. I have to admit I was a little reluctant at first. But then I sat back and looked at the whole picture. First of all, I take klonopin and it helps me more than I can say. As a matter of fact, if I didn't have it tonight I would have already called 911 due to some pretty bad arrythmias. Secondly, thinking that it was ok for me because it helped and not for him was hypocritical. I just worry about his age-but not anymore. Then I thought, look what this child is going through. If this can help him and take away alot of the symptoms, then by all means, let's go for it. He did try ativan for about a week and a half-it worked some but never really took the anxiety away. He was having a bad POTS spell one day and I tried some klonopin-within 30 minutes he was like a new person. Not groggy just "normal" It was amazing. I called the dr and told him. He said for now, do what I need to. We have an appt on Friday. I think he will probably end up putting him on it afterall. I will encourage him to anyway, just becasue I see what a difference it makes. So tired but just wanted to say thanks so much for being so kind to me, I needed to hear something good tonight. You actually made me smile Many hugs to you, danelle

1. Not that I can really recall but it has been almost 20 yrs! 2. Most definitely they were/are worse when I am sick or not feeling well, under stress, scared, angry, premenstral, season changes,etc. Also I noticed them to be alot worse with my second pregnancy. Also with ANY physical activity WHATSOEVER. 3 and 4. They vary in frequency and duration/severity for no apparant reason lots of the time. THe things listed above USUALLY make them worse but that isn't always the case, I can be doing NOTHING or they wake me up out of my sleep. Hope I haven't missed anything. Kitsakatsa, I am a nurse too! And I will take a piece of chocolate please!

Stacey, I am sending prayers to you, your dad, and your whole family. I can empathize, I went through a very long illness with my father. If you don't mind though, I would like to give you some advice, PLEASE take care of yourself. I know with everything going on it is stressful, but if you don't take care of yourself-you eventually crash-take it from someone with experience. I didn't do it and I crashed-haven't been the same since. My heart goes out to you, and please don't take my advice the wrong way. I just don't want to see you end up in the hospital as well Hugs and prayers, Danelle Please keep us updated.

JLB, I am the one that started the poll on benzos to try and find out what would be best to help my son in his treatment. I too got terrified when I read the responses and I am a RN myself. (I think I have responded to your other posts). Just to let you know, I have worked in many areas of the hospital but never the ER. But also to let you know that I have been having tachycardia, any arrythmias and dysrhythmias for the past 19 yrs. I am still here but I also get beyond panicy when that happens, especially if they persist-like they are today. I have seen MANY doctors and each tell me that I will not die from the arrythmias(by the way-runnergirl was right-bradycardia is the correct term for slow HR-which many people who are in shape, are on beta blockers, are young and healthyhave). Even being a nurse, I can't get over my overwhelming sense of panick when they decide to show up. I am on a beta blocker which helps SOME with the very fast rates but doesn't help with the irregular beats that scare the #&*% out of me. I am not sure why I feel I am going to die each time they happen. Sometimes I do better than others, but when they are bad, I totally freak out-even with my clonazepam. I say these things because I want you to know that you aren't alone with your overwhelming fear. (as you can tell by all the posts). I also wanted to apologize to everyone for getting this whole post started. I was just trying to find a way to hlep my son. Instead, I have managed to totally freak everyone out, including myself , and that is the LAST thing I wanted. I just was asking for advice. I am sure that Janine was just trying to be helpful and informative as well. I don't know her personally-in fact that is the first time we have even posted to each other. But I can tell her intention was to inform people about what she has seen, trying maybe to protect them from the serious irregular and fast beats-which we have all learned that they are not dangerous to POTS pts unless something else is going on-like heart damage, etc. It is such a touchy subject. ANd I know she meant only to be a help instead of a concern. I am not even sure if I am making any sense myself now because I am still in my fog, AND having MANY irregular beats and tachy today BUT just think, I am still here. Even after the 19 yrs. I guess there is something to be said for that too. I just can't get it through my thick head. I sure hope I wrote this in the context that I meant-basically if you have been checked out, had tests, monitors, ekgs, holters, etc and the dr has assured you that you will be ok, you probably will. (Listen to me-I am the POT calling the kettle black ) If your very concerned get that second or third opinion. Get some counseling(which I desperately need but can't afford right now)- it can help with the anxiety related to a chronic illness and they can teach you biofeedback(it just helps you breath, etc and learn how to deal with these panic attacks that WE have). It is normal to fell scared when your heart goes whacko-I think someone would be whacko if it didn't bother them. And I truly believe Janine was just trying to help. Janine, if you are reading, would you please respond? I would love to know if I am saying the right things, I would hate to be putting words into ANYONE"S mouth. I can't even put them in my own most of the time I would like some feedback, everyone tell me what you think. Once again, I am sorry to have started total panick on such a wonderful, supportive site. (I am just as panicked as the next) Love and hugs and NO arrythmias to everyone, Danelle

Mary, sorry I didn't get to talk to you today. I REALLY would like to catch up with you. I will be gone this weekend. We will be leaving shortly and will be back Sun evening. Please try and call me maybe Mon if you can. Hope all is well for you and Marissa. I am sending you many hugs and good thoughts. Love, Danellle

Corina, No I didn't. I like the sun too but it doesn't like me. I have to enjoy it from inside (unless it is in the 60's or low 70's with no humidity) but even the light puts me in a tailspin . I used to love the beach and loved the sun. Just another thing to give up. Sorry I am having a pity party today, seems I've had a lot of those lately.. I need to get out of this frame of mind. Everytime I am just about to, something knocks me back in it Thanks for caring, and just the thought of a pink rose makes me smile Danelle

Susie, didn't get to read all the responses(too tired) but I quit driving in June when I had to quit my job. I quit driving due to not knowing when I was going to pass out or have a spell. It really *****!!!!!!!!!!!!!!!!!!