boymommy3 Posted January 20, 2013 Report Share Posted January 20, 2013 Hi!I am so soooo very happy to find this forum! You can't possibly know how relieving it has been to read your personal stories! Well, I guess you can know. My story is very long so I won't share it all at once! I haven't been officially diagnosed with POTS, but my doctor truly believes that is what I have, and as my husband and I have researched more and more we are increasingly convinced as well. From all the reading we have done about how little doctors, even specialists, know about POTS I count myself extremely blessed that my doctor was the one who brought it up and told me she thinks it's what I have. I did have a cardiologist tell me two years ago with no testing what so ever, and very matter-of-factly, that I do not have POTS. I think I will start with the present and work backwards with my story. So here goes....I had the flu earlier in December and have pretty much been a mess since. In terms of my medical history, I have suffered with hyperthyroidism on and off for about 14 years. It has been a yo-yo of a journey with that. Almost all of the symptoms that I have had this go around were some of the same exact symptoms I had two years ago. With that being said, I have read that some people can have a remitting/relapsing form of POTS and I believe that may be how mine presents. I say that because when I when through this a couple of years ago there was literally a light switch kind of day that my symptoms stopped. Ok so for my current episode.....(I think the brain fog is getting me right now because I am having trouble keep my thoughts straight!) So yes, I had the flu earlier in December. I was sick for about 4 or 5 days. The first two days weren't too bad, but days 3 and 4 I thought I might die! I also had high heart rates those days (in the 140's). So I could feel that I was getting better from the flu but I wasn't feeling well at all. It started with a couple of nights when I went to be I got soooo very cold! I kept telling my husband that my bones were even cold. I could do nothing to warm up. It was almost painful. Then, one night I got up to go to the bathroom and my heart began to race and pound like crazy. I woke my husband and he said my HR was at least 160. I had a very scary experience happen two years ago because I had critically low potassium and it felt like that was happening again. My husband called his sister, who is an RN, to come down (at 4 am!) and I was telling him that I needed to go to the ER. I felt like my muscles were all stiffening up on top of the high HR. She got there and began to check me out while my husband went to get an Ativan. After taking that about about two hours of them talking to me, things settled a bit. She left and we were able to get a little rest. I went to the doctor the very next day. So again my doctor (she is the absolute best!) brought up POTS. She did ortostatics on me in the office several times and my HR was around 107 lying down and immediately upon standing it would go up to 130's -140's. My BP wasn't low and did change much this time, but last time I went through this it was low. Actually that day my BP was higher than normal. 127/86. I am normally 110-116/76. Anyway, she really wanted me to schedule the TTT and she did all sorts of labs and sent me home. She did, however, send me home with Ativan to take (very, very low dose) to help when I have the really bad, spiral down moments. I seem to respond well to the Ativan. She also prescribed a BB. Toporol XL. Within hours of taking the first dose of BB I could feel my HR slow. However, was having terrible muscle twitches, a general terrible feeling, and dizziness. I also will sometimes have these crazy shaking episodes. I mean I will literally shake/tremble from head to toe. My teeth will even chatter sometimes and I can not stop it. What has been new this go around has been really strange head/eye stuff going on.At this point the reason I haven't done the TTT is because I have such good results with the BB that I DO NOT want to go off of it to have the test done. Especially if it won't really change my treatment. My doc said she is comfortable with treating me as though that's what I have as long as I am comfortable with it. If at any point that changes I am to let her know. She had told me to drink gatorade and we didn't know why. My husband said that she must have thought I was dehydrated. He got me a 32oz gatorade and I got about half way through the bottle and I told him that I thought I might feel a little better. He said that I must have been dehydrated. The next day I didn't drink one. Then the next day I was really awful and later in the afternoon he said he was going to get me another gatorade. Again, when I got about 1/2 way through the bottle I noticed a difference in how I felt. I mean I was jumping stumps or anything, but I could tell a difference in how I felt. He and I both thought it was so weird! THEN...I read that that is a method of treatment for people. That's truly the moment that I began to really believe she was on to something. I have drank a 20 oz. gatorade first thing in the morning every day since. The other thing that hit home big time was I read about people having trouble retaining fluid and peeing a lot. Oh my gosh!!! When I have these episodes I pee like CRAZY!!!! I have done this for ever and no one could ever figure out why. Truly, my doc didn't even think that much about it or didn't think that it was my most pressing symptom. When this happens and I pee constantly it is literally CLEAR, like you can't even see it in the toilet. That was always what I found so strange! I kept telling my husband that I knew I wasn't THAT hydrated. That I actually wasn't drinking that much. I use to have a lot of anxiety about but not now that I know it's a symptom. Ok, that's enough for now. Or probably too much! I just have felt so alone for so long, I just want spill all the beans in one breath!!!! Quote Link to comment Share on other sites More sharing options...
looneymom Posted January 20, 2013 Report Share Posted January 20, 2013 Welcome to the forum and so glad you have a doctor that recognizes POTS. That's a blessing! Lots of information to view and lots of people that care. It also helps to have a spouse that's understanding. If you can't find an answer to a question, be sure to post. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted January 21, 2013 Report Share Posted January 21, 2013 Welcome to the forum, although I am sorry you had to seek us out. That is great you have a doctor that recognizes POTS and is working to get you to feeling better. Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted January 21, 2013 Report Share Posted January 21, 2013 Welcome to the forum! I'm sure you will find a lot of useful information here, as well as support from fellow potsies.Pam Quote Link to comment Share on other sites More sharing options...
RubyLane Posted January 21, 2013 Report Share Posted January 21, 2013 Welcome!! I only found this forum a few months ago and I can't say enough about what a blessing and comfort it has been in my life! Quote Link to comment Share on other sites More sharing options...
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