bebe127

Have you heard of Beverly Lewis? She writes about the Amish. They are easy reads and interesting as well. When I'm not feeling too well, I, like you don't want anything too heavy.

I know it is hard, but try not to worry. Anxiety just makes you feel worse. When I had my TTT the dr. wasn't even in the room the first time. He told me that most people don't respond for about 20 min. I proved him wrong. They stood me up and within 3 minutes, my heart rate was up to 150+. I could feel it coming on and told the nurse, "IT'S COMING!!!" Once the dr. came in and saw the tapes, they immediately put me down and within minutes all vitals returned to normal. He repeated the test two more times, each with the same result. My BP actually went up and I did not faint. Like many have already said on here, hopefully, at least you will know what's what when it is over. I don't recall feeling better or worse after mine, just really tired. Like Spinny said too, make sure you have someone going with you to drive as well as for support. You will be okay. I will be thinking about you and praying Bebe

Richest blessings to you Pumpkin

I hope someone can help you understand this and in turn help me as well. My vitals seem fine one day, yet I feel poor. The next day my BP is lower than usual and HR higher and I still feel poor. The next day my BP is on the higher side with increased HR and I still feel poor. In conclusion, it doesn't really seem to matter what my vitals are, I still feel poorly. I just don't get it. I am on a BB that seems to help somewhat, but my vitals are still all over the place day to day and I just can't seem to get a handle on it. BTW, MomtoGiuliana, how does a dr. check for low blood volume? I've never had this checked and no dr. has even ever suggested that I get tested for it. Another question...can someone explain pulse pressure and its significance, if there is any? Thanks! Hoping you feel better soon Achilles

I have floaters too. I went to my eye dr. recently and he gave me some technical term for it and explained why, didn't really help though. I also have (what I consider) a rather quick onset of farsightedness, where I need reading glasses now. Eye dr. told me it was just my age. Didn't really flinch or ask questions when I mentioned I had POTS. Still not really convinced that it is my age and wonder if it has something to do with the POTS and/or a side effect to meds. I have read that there are special eye doctors, opthamologists maybe that can actually tell a whole slew of medical issues just from looking into our eyes ie: high blood pressure, diabetes, etc. I personally have never come across any article about floaters being POTS related. If anyone has, please share. I have had these since I was little, although must confess that they have gotten worse since my dx. Oh, the mysteries of this syndrome!!

I agree with your Dr. Katybug. My hubs always says, "It's good to know what you know, but even better when you know what you don't know." So wise...my hubs! It is only when we are aware and accept what we don't know, that we can adjust our path to finding out and the "not known" may become "known". I wish all doctors were aware of this. In the wordage of Yoda...wise doctor, you have

Terradactyl, As you wil read on here quite often, everyone is different. In my case, I was told to increase my salt/water as well. Personally, it didn't help me at all and in fact led to some hypertension. I have tried extra salt on foods, Gatorade, and salt tablets. When I was dx. the dr. told me that he couldn't/wouldn't prescribe (what he considered the "only" medication to treat POTS) Florinef as my bp didn't drop significantly but increased during the TTT and I could experience hypertension as a result of taking the meds. So he told me to increase my salt??? Anywho, I had a bout with hypertension (not sure if it was salt induced as I had had been dx with hypertension before being dx with POTS) and am now on BB's prescribed by my GP and doing better. BTW, I don't faint. It is my understanding that by increasing salt intake, it helps to retain fluid which in turn increases our blood volume (always research and ask your dr.) Hope you get some answers and relief

MomtoGiuliana, Thanks so much for your advice, I did take it and hid my sibling from my newsfeed. I didn't want to de-friend her as I do want to keep tabs on how she is doing. I do love her and only wish the best for her and her family, however there comes a time when we need to step away from the negativity and focus on the positive. I agree that FB can definately have a negative effect and as such will try to be more discerning in the future. Thanks again!!

Altruism, I so agree with Joann. I am exactly the same, some days I can push through and others I cannot. Everyone is different and reacts and responds differently. For me personally, I had to "push through" this week and will need to for the next few months. An example of "pushing through" for me was yesterday (really the whole week, but I'll just talk about yesterday). I'll try to give the short version (I tend to ramble on and on!) I awoke at 7:00am and began my morning routine. I usually take my meds at 8:30am but ended up taking them a bit early (and doubled up on the anxiety meds) as I could feel anxiety creeping in. I had to get ready to leave my house at around 9:30am with the kids to go to homeschool co-op classes. I also teach a poetry class for an hour. This was our first Friday back since the holiday. I guess just knowing I'd have to leave the house, drive and teach were all getting to me. I was jittery all over, could barely do my makeup and my heart rate was up in the 140's. We got to co-op and my heart rate was still high. The whole drive there (about 20-30 minutes depending on traffic) I was praying..."Lord, please just get us there safely, don't let me hurl, give me peace, slow my heart down, will You please tell the crickets in my head to stop their incessant chirping" and the like. Thankfully, I didn't go into a full blown panic attack. The meds only seemed to be having a little effect on me. I kept telling myself that if anything happens, my kids (teens) can dial 911, if something happens at co-op there is a firefighter/EMT who is there and will know what to do (coincidentally, he has a daughter that suffers from dysautonomia), my husband is only a phone call away. Anywho, I made it to class, with my heart ready to jump right out of my chest, felt dizzy and ready to hurl. I taught my poetry class, which among other things involves being on my feet for an hour. By the time class was over, my heart rate had decreased a bit, but I still felt yucky. After class, I went to go sit, relax and wait for my kids to get out of their third class. I couldn't wait to get home. But, the real great thing...was that I had done it! I didn't really have a choice. I must tell you that I in no way intend to imply that my symptoms are better or worse than yours or anyone else's. I don't pass out, but I do have the myriad of crappy symptoms that go along with POTS. I can tell you that I did choose a certain reaction and response to those symptoms yesterday, and I chose to "push through" by praying and using positive self talk to get me through the day. Some might think that yesterday was "no big deal", but to me, it was huge! I have only recently (in the last year) begun to drive again. I have severe anxiety and some days I can't even make it out of bed, let alone even think of make-up. But...yesterday I did it (with the help of answered prayer) and who knows what tomorrow will bring or next week? We all have to live one day at a time, and sometimes it is one second at a time. Be encouraged! I don't know how long you've been sick, but it took me a good 2 years to find my "new normal" not that I wanted to find it; I want my "old normal" back, but I needed to find it and hopefully you can find yours. Here's to hoping that you have good days ahead!! Blessings to you!

Right there with you Achilles. I was diagnosed with "what is probably POTS" by an electrophysiologist. Now you would think that if one is diagnosed with an illness that is "probable" would not the dx. dr. have a myriad of tests done to find out the answers to the questions of the 5 W's??? Not in my case anyway! After dx me with "what is probably POTS" his next brilliant suggestion was "Eat more salt, drink more water and go live a normal life." In the words of Barney on How I Met Your Mother..."True story!" This dr. never even bothered to tell me how much salt or water. To date, I still, to this day, don't know how I got POTS (even if I truly have it), what type of POTS I have, or how or if I will ever be rid of it. I get treated by my GP (after going to various other specialists) and he was the only one that even suggested Beta Blockers, which I am now on and have been for about 2 years. I believe what looneymom says in that we need to never give up on looking for a doctor that will listen, researching as much as we can, keeping track of EVERYTHING and taking it all in when you have a dr. appt. I also keep a jounal of how I'm feeling too. I don't necessarily keep up with it daily, but I do record things like: how I'm feeling that day, BP/HR readings, symptoms I am having, reactions I might have and the like. I take this in with me to the dr. as well. I have even typed up a short, to the point paper explaining the chronology of my illness (and the Dr. actually sat there and read it!!) I think I might even make up a table on the computer so that I can keep better track of things (I'm kind of a spaz that way!). Mainly so that if I ever get to a Dr. (besides my GP) that is interested in my medical history and helping me to improve my quality of life, I'll have it all for him/her right then. Sorry for the novel... Hope you get some answers

Thanks Sarah, I did take the route of writing her. Some might think that is the cowardly way out, but I tend to do better getting all my feelings down on "paper" so to speak than trying to remember everything over a phone call. The ball is in her court now, but she hasn't bothered to do anything with it. I have let it go. I also somewhat followed the advice of taking a break from her on FB. I didn't de-friend her, but did hide her stuff so I don't have to see it, but can still check in on her. It is such a shame as I am (was) the only sibling that she speaks to. Oh well, I have better things to save my spoons for, like my wonderful hubby, two beautiful gems, other family members and friends. One of my biggest triggers is emotional stress. The littlest thing bothers me; it took over a week for me to get over this one. I have learned, once again that I need to stay away from the negativity and focus on the positive. Thanks again

Kalamazoo, I've been on Metoprolol (25 mg 3x) for well over a year. I have had no problems that I know of relating to the medicine. It is a beta blocker that is supposed to control your heart rate and blood pressure. Good news: It seems to be working as it is intended and I've had no side effects. Bad News: I really don't "feel" any different. I can still feel poopy and I take my vitals and they are relatively normal. I do still have tachy almost daily and sometimes my bp still fluctuates, but the frequency has diminished over the years. The dr. suggested I up the dose to 100mg a day, but said it could lower my bp too much and I could pass out. My hubs and I discussed it and decided against it, as I have never passed out and don't intend on starting now! My bp is generally on the avg-high side normally. Like I said, I still feel poorly most days, but my vitals pretty much stay constant for the most part. It is important to note that everyone is different and reacts differently to all medications (as I'm sure you already know). I know that you just want to know what to expect. I (and many other people from what I've read) can be very sensitive to medications. It's good that you will begin the new med on the weekend. I hope you have someone that can help if need be. A bit off topic, but making a point; some people can take SSRI meds and be fine while I have to stay away from them like the plague!! Just remember everyone is different. I sure hope you find relief and get to feeling better soon Bebe

Badhbt, I feel for you as I go through this daily it seems and can never really get a handle on it, wish I had some advice for you. Beginning this week I've basically gone from being homebound to having to be out of the house 4 out of the 5 days of the week. I recently just started driving again, after 3 years. Over the last three days I've schooled my kids, done laundry, fixed up dinner, household chores, taken dd to dr., volunteering, and college course, taken ds to dentist, and ran errands. Might not sound like much, but to me; it's like running a marathon without training first!! The rest of the week looks like so: laundry, house chores, schooling kids, take dd back to dr. then to breakfast, taking kids to co-op classes Friday and teaching a one-hour poetry class at co-op as well. Monday and Tuesday I was on top of the world. Even hubby noticed and said he was so proud and pleased with me. I felt so good, I nearly forgot I was sick. I really can't remember a time that I have felt this good. Then, I was awakened at 5am this morning with what seemed like an adrenaline rush. I awoke feeling really poopy and feeling shaky all over on the inside, like electricity was running through me. I checked my BP and HR and everything seemed fine. I wasn't sweating, no difference in chest pain or heartbeats. I was ready twice to call my hubby home from work, but refrained. It was really weird. I lay in bed trying to relax until I finally took a Xanax to try to relax. Then I felt really sleepy and actually fell asleep with book in hand only to wake up again at 8:30am. I was feeling a bit better and was trying not to think of all the things I had to do today. Good news is, is that I pushed through, got the things done that needed to be done and now am trying to relax. Like I said, I go through the whole "good day" "bad day" thing and it can be so frustrating especially not knowing what the triggers might be as nothing in my life has really changed (other than schedule), but why did I feel so good Monday and Tuesday??? Such an unbelieveably frustrating way to live. But live we must!! I sure hope you get to feeling better and are encouraged that there are many in your boat, which is apparently our boat now. Sadly, I'm sure there will be many more passengers, and we must remember that many hands make light work Feel better!! Bebe

Did speak with the Dr. this evening. Canadiangirl and Katybug, she did think I was referring to Potts and, yes it was a bit disconcerting that she didn't "get" the dysautonomia part. Yes, I did a bit of educating there! Not too worried about the EBV at this point since dd had this years ago, even though I don't recall it (that part I am worried about! although I can't remember what I had for breakfast, so not too surprised). She will still have the Ppd test just because it is routine. Katybug, I don't think she has any disautonomia (I guess I was just initially concerned), but I will be taking her in the next few months for her regular Cardio visit and I will mention it to her Dr. then. As I stated, she has low iron and I really thinkk that is the culprit. Now if I can just get her to take her iron supplement daily; you can lead a horse to water, but you can't make her drink!! She is, by the way feeling a bit better...thank you:)

I totally agree with Tuesday, Linj10!! You are NOT ALONE!! I go through this as well. I too think that realizing our limitations and accepting that this is the "new-not-so-improved" us, we can begin to find our new normal. Once we begin on that journey, we can hopefully improve, if only little by little. Through my own illness, I've learned a new meaning of "one day at a time", and sometimes it's "one minute at a time" or "one second at a time". We just have to have hope, choose happiness and keep on keeping on. Here's to hoping you feel better soon ((Hugs)) Bebe

Sue, my kids always had it done when they went in for shots during their elementary years. My kids are teens now and I don't remember if it was a yearly thing or a one time thing. The test consists of the dr. injecting a small amount of liquid right under the skin, then you wait and go back in a day or two to get it checked to see if there was a reaction. With my children, I'm guessing it was just all part of the regular immunizations/physicals and such. I have always known the test as "the TB skin test".

Thanks Canadiangirl, I did tell the Dr. that I had Dysautonomia in the form of POTS. I did not however clarify that my POTS is Postural Orthostatic Tachy Syndrome (even though I did prelude it with Dysautonomia). Thanks a bunch though, I will definately bring this up when we go back in!

Not sure if this falls under this particular forum, but I have a question. I'll try to make this short. I took my teenage dd in for dr. visit with her pediatrician. She has of late been complaining of "not feeling well". She had been dx back in the summer with low iron and was put on an iron supplement which unfortunately, she has not been keeping up with consistantly. The dr. of course expressed the need for my dd to keep up with the iron supplement, which we will now be doing to the best of our ability. I also expressed to the dr. that my dd's friend has/had Epstein Barr and could that be the reason for her not feeling well also. The dr. told me that my dd had Epstein Barr sometime back in 2010 although the test showed that it was not active at the time of the test. Therefore, my dd must have had Epstein Barr sometime before this time (I have no reccolection of her ever being dx with this). At any rate, I was diagnosed with POTS back in 2009 and am always concerned that my children might get it, as I see so many times on this and other sites that it can run in families. I however, do not know exactly how, why or when I "got" POTS as no dr. has ever suggested any reason for it or any real prognosis. I expressed this to the pediatrician as a concern to me. The dr. later called me at home and told me as she was entering notes on my dd visit she noticed that my dd hasn't had a PPD test (the skin test for TB) done in quite some time. I remember as young children my kids getting this test, but it has been a while since they've gotten it as of late. The dr. told me that since I was diagnosed with POTS, my daughter should have this test. DD is scheduled for a follow up on bloodwork done (at this last visit) and a physical as well including the PPD test. My question is...is why would the doctor say "because of [my] dx with POTS", she should have this PPD test done? Is there some coorelation between the two? I guess I should've questioned the dr. on the phone, but didn't. I will bring this up at our next visit. Just wanted some input from you all. Thanks in advance for any input, P.S. my dd also has heart murmurs (VSD and PFO) I will be taking her to her cardiologist soon for her routine check and sonogram.

Tracyf, I was diagnosed with "it is probably" POTS. I have tachycardia daily and no triggers that I have noticed. It is not even necessarily when I stand, it happens randomly. My BP fluctuates as well usually to the hypertensive side, although I experience low BP as well. I do not have OI symptoms at all, and have not passed out, not even during my TTT. I often wonder if I even have POTS and if I don't, like you, I wonder what it is that I have. I too don't really know where to turn to find out. I am going to hopefully go see a new EP this spring that supposedly specialized in Dysautonomia. Maybe I'll get some answers there. Here's hoping that you find some answers too!! Wish I could give you some, but all I can do is tell you that you are not alone and to keep on keeping on. Feel better

I too stuggle with this daily; the thoughts of "is this just POTS". My Dr. is not all that knowledgeable either, so that just fuels my worry. I do not have the vein swelling and pooling that you describe, and am so sorry that you are having to deal with this. I have good days and bad, and often times I allow the worry and fear to rule my life. This is not healthy, and in my mind I understand this, but my body doesn't always listen (sometimes it's the other way around). I try to lean on my faith as well as the people on this/these sites for encouragement and support. After all, it is only those that stuggle daily with chronic illness that truly understand what we are going through. I am truly thankful for this site and all the encouragement, support, and information that it gives me. I pray that you get answers soon. I know how hard it is to find Dr.s that have an understanding of these conditions as I have had a tough time trying to find anyone in my area (and I live near a huge metropolitan area) that even knows anything about POTS or Dystautonomia much less one that treats it. I'm so sorry you are frustrated! Rest assured there are many in the boat with you and hopefully with time and patience we can all find what we are looking for together. Richest blessings to you

Thanks!!

I get this too. Mine is a chronic-like pain about a hand-width from my left collarbone and goes around under my arm. At times there is a stabbing pain that takes my breath away. Don't know what it is or what causes it. Sometimes I fear I'm having a heart attack, but by the placement of the pain, I don't think that is it. I've asked a doctor about it one time and he said it wasn't related to POTS or my heart. Never did tell/suggest to me what it could be. Go figure...this bit of wisdom from an EP that was supposed to be a specialist in POTS!! I also recently have breast pain. It's a lot like you describe it...painful to the touch (like a bruise, only there is not one there) and also not really a muscle type pain as it doesn't really hurt when I move a certain way. And, goodness knows it can't be a strained muscle from exercising, becuase I haven't done that in months! I also have random stabbing pains all over and not necessarily in joints or muscles. Wish I knew what it was, what caused it and how to get rid of it. Like you, I just chalk it all up to just another symptom of this wonderful illness. If I ever find anything out, I'll let you know. Hoping you have a pain free day!! Happy New Year!! Bebe

Very inspiring!! Thanks for sharing

Thanks MomtoGiuliana. I am feeling a bit better. I have decided to give it all up to the Lord. After a long talk with my wonderful husband, he helped me to realize that there is nothing I can do or say to change her or her views. I am just going to go ahead and say this sibling is a sister (so much easier than saying sibling all the time). Like your sibling, everything has to be on her terms, and I don't know about you, but with mine; it doesn't matter what I say or do, in her eyes, she is always right and everyone else is wrong, and as such there is no way for me to let her know how I feel, even gently. I feel sorry for her. She has successfully estranged herself from so many family and friends including her in-laws. Her spouse as a result has no relationship with his own family even. It is just so sad to me and maybe that is why it affects me so. I will just have to pray for her and let the Lord do His work. I cannot change anything and it is just not worth it for me to expend any more energy (that I don't have already) on this type of negativity. Good idea on the whole "taking a break" from FB and whatnot. I need to surround myself with positive thoughts and positive people. Blessings to you.