danelle

I have been on atenolol for over 18 yrs now and it isn't working as well as it used to. I take 37.5mg/day and sometimes an extra 12.5-25mg depending on my tachy. TThe only problem is that my BP runs 90's/50-60's on my regular dose and when I add the extra it drops into the 80's. I was thinking about trying Toprol xl that releases trhoughout the day but am afraid to. Before I started the atenolol, I had tried so many other beta blockers and calcium channel blockers that I don't know what the Toprol will do. I just don't want it to make my arrythmias or tachy worse or lower my BP more. Anyone out there had experience with one or both? Your advice and experience would be greatly appreciated.

I have heard some people talking about having low potassium with POTS, has anyone had this experience? I have only had it once and that was about 6 months ago, maybe I should get it rechecked even though they treated me with potassium pills at the time.

Amy, I haven't driven in a year anyway. I don't feel safe or strong enough to drive because I never know when a spell will hit me. Believe it or not, I never got sleepy or napped?! Figure that one out. I do notice that I usually (not always) have more irregular beats right before my period. I've never really paid attention to ovulation time. I think I was ovulating over the weekend though. I am still having lots of palpitations 2 days later but it is to early to tell if it is going to be a good day. I sure am praying for one though. Thanks, Danelle

EM, I read the article. IT makes alot of sense. I usually don't get too stressed over a flipflop or two but it's when they are constantly coming and I feel faint or when the come in a row, be ok a minute, then come in rows again that I freak out. Like I said, I think it is just because I am obsessive-compulsive and can think of nothing else at the time other than dying and leaving my two children behind. This has been a problem(the panic/anxiety/fear of dying) for 20 yrs and ever since my heart has started doing it's craziness--which is what stemed the above sx-I can't seem to shake the terror. I don't know hwta the heck is wrong with me. I do have alot going on right now but I think I am just a weak person, I don't know. I will take what I read fromt he article and think about it when it happens, I might just print if off too!!! Thanks. Tearose, you are so funny You made me laugh thinking about the whole gatorade thing again. I do try and drink atleast 2 large glasses of gatorade a day with lots of salt added to each glass, including lots of water. SOme days are easier to make yourself drink htan others but I will pour it down today! Hugs, Danelle

Thanks for all your great ideas! It is cold and very rainy here today. I am unable to take walks anyway due to major palpitations and/or tachycardia (this is with my BB) I can't do any exercise whatsoever, it gets so depressing. I will go back and read some o f the other posts. I get obsessive and compulsive though when it comes to this and I can't focus on ANYTHING else. The sad part is that it has ruled my world for 18+yrs now-actaully as I look back I realize I have had it all my life but the major downhill slide has been ovver the past 1-2 yrs. Hugs to you all, Danelle

It isn't really any different than it has been in the past-not right now anyway. I think I would do some better i f someome were here with me. I HATE the ER too. I will try and ride it out for now. Thanks for the prayers, I need tohem.

I have been having very irregular beats today and I am scared, almost terrified. I have taken 3 mg of clonazepam(Klonopin) over an 8 hour period. My normal dose it 0.5-1mg 3 x day. I haven't noticed much help with the anxiety, it's like the med isn't working. It will probably all sneak up on me at once but like I said, it has been over actually a 9 hour period. I so hate this fear/panic I get when this happens-it controls me. No one is home and everytime I call someone they are busy. PLEASE HELP-should I call 911?

Morgan, I know how you feel. I felt that way often until last week, then I felt that way constantly(that is when my son was diagnosed as well). I can truly understand but something is telling me not to give up, not sure what but something. Please hang in there and try not to lose all faith(I will practice what I preach as well) Many hugs to you, Danelle

Gena, I need to ONE of my little stories. I was talking to my husband on the cordless phone and while carrying my glass of gatorade in the other hand. I was just rambling on to him, then suddenly I realized he wasn't answering. I kept saying, "Hello? Hello?". No response. I had been walking through the house when he called and instead of setting down my glass of gatorade, I sat the phone down and was talking into my glass!! It took me a few minutes to realize what I was doing. When I went back to the phone, my husband was still there and as I tried to explain what happened, he interrupted and said, "It's ok honey, I know you're having a rough day." I hadn't laughed so hard in a long time. Now when the phone rings, I stay in one place with nothing in the other hand!!! Danelle

Hang in there, I think there are many of us in the POTS hole or canyon as Morgan said! I'm gonna check out the site Gena suggested, I could use a laugh too. Please hang in there and let us know how you are, also know you aren't alone. Maybe it is the time of year or something? Who knows? Wishing you better days, Danelle

Amen. I pray for all of us as well, including my newly diagnosed son. May God heal us all or atleast give us better days and better ways to cope with our situations. And may the medical field get more educated quickly so that they can help us and others that come along as well. God Bless You All

YES, it is hereditary-or I should say it CAN be. I was finally properly diagnosed about a year ago and my son was dx last week. There are several of my family members who show "POTSY" symptoms but haven't been diagnosed as of yet. There are lots of articles out that give heredity as one of the causes of POTS. Dr. Grubb, and my son's new POTS dr both have said that it can be hereditary. It doesn't mean that it always is, however. THere are many causes. If I weren't so tired I would find some of the many article that state this. Maybe I will have the strength to do it for you tomorrow Sorry, it's just been a bad day. Hope this helps

Thanks for all of your kind responses. Sounds like others are having issues with their children as well. I can't talk long tonight but will fill everyone in much better either tomorrow or Monday(depends on if I can get the privacy tomorrow). I am sorry I haven't respondeds sooner-we got the dx on Wed, then my husband had a business meeting out of town and Derrick and I loaded up and went with him. We are just now getting back. I am exhausted-gonna shower and hit the sack. We are all hanging in there but barely. I am at a numb state right now. I promise to fill you in more in the next day or so. Thanks for all the prayers and responses. MARY-thanks for the sweet message on the answering machine-I just got it. If you get a chance, try and call me tomorrow or sometime this week. I am gonna go shower and crash for now. Love to you all, Danelle

With everything going on with my health, my ssdi denials, my financial and family situations-what could get worse? Let me tell you what can get worse. My wonderful,huge hearted, fun-loving, full of life son was diagnosed with POTS today. I had suspected it for sometime and I got my answer today. My world has crashed down around me. Whoever says God won't give you more than you can handle has never had such a load. God help me and my family-ESPECIALLY MY BABY BOY Danelle

Hi, I need to go back to a dr who specializes in POTS and my appt with Dr Grubb was cancelled last month because of his illness. I probably couldn't have made it that far anyway.-12 hrs I have seen a dr in charleston at MUSC-Dr marcus wharton who is originally from Duke who gave me my POTS dx. I saw him twice. THe only problem with him was being able to get my records and getting any response from him at all-but he was/is a great dr. I haven't been to vanderbilt but they are about the same distance(nashville is about 40 minutes farther for me-6 hours. I am doing this to help my disability case. I want them to have more info for my hearing whenever that may come up. They told me it would be 13-18 months. Which do you all recommend? I know that Dr Wharton is somewhat familiar with me but I have heard such great things about vanderbilt-just not quite sure what to do. Danelle

Dawn, first welcome to the forum!!! We are so glad you found us. I am very POTSY today so excuse me if I dont make much sense!!! I gave up my job as a nurse in June 04. It was one of the hardest things I have ever done in my life. But I knew I couldn't keep going, my body just wouldn't let me. I would end up in the ER. I was misdiagnosed for 18 yrs. Just got my dx last year and that was with much determination on my part to find out what was going on with me. My story is very long and detailed but just to let you know, SSRI's don't work for me either. I am on atenolol and klonopin. They both help somewhat but not like they should. I am in an EXTREME depression right now and can't drive either. I just got denied for my disability at the reconsideration level but have retained an attorney and I will fight until I win, I have no choice. Have you considered that option? What is the hyperadregeneric type of POTS? Just wondering because the klonopin doesn't take away all my anxiety nor my panic attacks and over stimulation. Also what is cardio vagal failure? Would love to write more but this has taken me a considerable amount of time and effort to write. I am just worthless today Once again, so glad you found us and hope to talk with you again in the near future. Please hang in there and don't give up. We are here for you and can truly understand what you are going through-which is nice for a change. You don't feel lijke an alien anymore-atleast this site has made such a difference for me. Hope you ahve better days in the very near future, positive thoughts are being sent your way along with cyber hugs. Danelle

Julie, so sorry to hear of your denial. I am in the same boat. Last week I received my denial on the reconsideration level and was beyond devastated. I saw an attorney on friday and retained her. I spoke with the paralegal because the attorney was out for the day but she was very impressed with how thorough my information was and the letter written by my family dr. It obviously did me no good though I also thought about going out and getting drunk but knew better. I can't handle even a half a drink these days. I would also end up in the ER and that is the LAST place I want to be-those uneducated looneys- WHat can we do to educate the public, and medical field about POTS and dysautonomia???? It is so debilitating but yet they know NOTHING. Hang in there and fight. I seriously thought about giving up but then I thought well, then what would I do? I definately can't work and I am NOT going to let the sorry government beat me out of what I need to survive and deserve!!! Best of luck, Danelle

Poor MM, what are we going to do with you? Why don't you pad your furniture with bubble wrap or something? I am making more and more "Nina moves" myself. You must be contagious Please take care and let us know how you're doing. Danelle

Purplefocus, Many thought and prayers are being sent your way for yourself, your family, and especially Mindi. Please let us know if there is anything we can do. THis is a time when you feel helpless.....(meaning all of us). Just give her lots of love and happiness and let her know there are many people praying for her and that God is ALWAYS there for her. Take Mary's wonderful advice and leave your burden at the door, just for a little while. God bless you, Many hugs sent your way, Danelle Mary, what beautiful advice. I am so touched by what you wrote. It was good to talk to you the other night even though both of us were about "out of it". I will follow your advice as well.

Congrats!!!! I have two boys too (19, 17). There is nothing like the bond between a mother and her son(s). They will enjoy each others company too and grow close over the years-in between the fights Danelle

Stacey, how beautiful!!! Those quotes say how I feel about everyone on this site too, thanks for sharing them with us! Danelle

Mary, I just found it. Pott's disease is TB that affects the spine. Good grief Can't people spell-well I shouldn't have said that because we POTS folks can't spell too well especially during our worst time Anyway, just thought I'd let you know where that came from because I needed to know for myself too. Now I can tell my sister to tell her mom she spelled it wrong when she looked it up(in case you are wondering, we have the same dad not mom) but I love her just like my full brother and sister and other half brother. My dad got around Danelle

Mary, I am sorry to hear of your ER visit, Gosh I hate those. You have to explain POTS to them every time you have to go in and then they still don't get it because they don't listen!!! It is odd that you said something about TB spots on the spine because someone who found out I had POTS apparantly decided to "investigate" it herself and she told my sister that that is what she found-that I had TB of the spine??!! Go figure, now that you have said that too, I think I am going to "research" it myself to see how they came up with such an absurd thing. Maybe they were spelling it wrong or something. I sure hope that you and Marissa get over your humps and have better days in the near future. I know you will. God Bless, Danelle

Mary, I miss talking with you. Thanks so much for taking the time to reply to me when you have so much going on yourself. I really hate to hear that you are having such a hard time. Maybe it is the time of year or something in the air, who knows????? I sure hope that you and your daughter start feeling better. My prayers are with you, and please keep us posted on how you both are doing. Many cyber hugs sent to you Danelle

Thanks to you all for your suggestions. Blackwolf, thanks for being so precise about things to do. I didn't get to my attorney's appt today because of snow but I will see her friday at 10 and I will update you on what she says. Thanks for everyone opening my eyes for a battle I couldn't fight on my own. I really don't know what I was thinking. You all are the best