bebe127

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,

Some days I can't push thru. I have high bp and on some days if I try to push thru it will just continue to climb and the pain involved will tell me, if I continue I will end up in hospital. However, other days, I may feel terrible and have high bp, but if I get up and can walk slowly, it sometimes does get a little better.

Can't tell you why this is, and can't say it is the same for anyone else. Everyone is so different. I have some things I just cannot do no matter what.

I saw my cardiologist today and I think she summed it up quite well, she said "POTS *****!". That was her professional opinion.

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.

Will do, hope everything is OK!

I am a Potsy, but I am posting this here instead because this doesn't necessarily have anything to do with POTS other than causing me to be symptomatic.

Bit of background...

I am the type of person that doesn't let things slide. I can't just "let things go". I have to talk about it, harp about it, vent about it, and even then it is still not out of my system...I dream about it. I am a rule follower (for the most part) and believe in treating others as you would want to be treated. I am the type of person that takes anything and everything to heart, all the while knowing that by doing so it might negatively affect me. I can feel my heart rate rise as I write this.

I can't stand it when people use social networks, ie: Facebook to post snippy comments about you without naming you (you of course know they are meant just for you). I mean seriously, are we in high school still? It is even more sad when the person posting the snippy comment is your sibling.

I have a sibling that none of my other siblings get along with. I am the only one that speaks to said sibling. We talk all the time on the phone, but thankfully live hundreds of miles away from each other. I can't stand to be around my own sibling when we are together, but somehow are able to get along fairly well on the phone. This particular sibling has issues (don't we all) however, I think a mentally healthy person has the ability to acknowledge at least some issues and work on improving them. To top it off, my father, whom I love dearly and have a great relationship with, refuses to see that this particular offspring of his is a total nightmare. He constantly enables, sticks up for and thinks that all of us other kids have "had it in for [this sibling] as long as [he] can remember".

I have been symptomatic for two days over this whole thing. Emotional stress really kicks my POTS into high gear! I can't stand it and I can't get rid of it. I try to occupy myself with other things, that doesn't work. I try to pray, that doesn't work either. I try to read the Word, that isn't working. Now, I am trying to write about it as yet another venue to get it off my chest and out of my head. This isn't working either.

Do any of you have this problem with emotional stress and/or it affecting your illness? I mean, all of us have emotional stress, obviously, but do any of you feel that it just goes to the extreme and there is nothing you can do to be rid of it? I wish I was the type to "just let it go". I feel as though I allow this sibling to hold me hostage emotionally. Why do I do this??? Is it just me, the way I'm made, my personality, or is it all of this compounded with the POTS that gets me to this place. I want off this ride...

Ok, I'm done venting, well that's probably not true; give me a month maybe...

Right there with you. My fear waxes and wanes. I agree with southbel about our signals being messed up. I've read that our ANS controls our fight or flight response as well as anxiety, so with someone that has this all out of whack, it is no wonder we feel this way, many times all too often.

I had a few sessions with a psychologist once and it was a joke (if you've read my blog post on this, you'll know what I mean). This is NOT to say that therapy cannot be a helpful tool. I think the secret is finding one that you gel with. Kinda like the doctors in our lives, some are great and understanding, so you keep those; other's are complete idiot's, so you throw them to the curb and start searching again. I think that it would be wonderful to find a person that you can talk to. Maybe there are support groups for chronic illness in your area (sadly there are none in mine that I have found, plus I don't drive, so it would be kinda hard even if I did find one). When I saw the therapist, she suggested I get this book: "The Anxiety and Phobia Workbook" by Bourne. I went out the first day and purchased it. Even though I know that I don't have anxiety or phobia disorders (as it all has to do with the ANS being out of whack), I did find this book to be helpful. Just like everything else, I take information that is useful, and throw out all the rest, so to speak. I did find this book to be quite useful. Of course being able to vent on these sites is helpful too, but if you are anything like me; I feel sometimes that I would "give my right arm" to find a flesh and blood person that I could talk to, that wouldn't judge, but that would just sit and listen with a few understanding "umhms" thrown in for good measure.

You also mentioned about your faith in God. I am a believer, and I do believe that He can do anything. I do believe that "we can do anything through Him who strengthens us". I also believe that God is not a magician. It is His will for our lives that he wants. I don't believe that He wants us to suffer, but to find joy in all things. I know that it is so hard to find the joy when we are feeling so poorly, so many of the days, but I do feel (personally) that at times I am thankful for this trial of POTS as I wouldn't have drawn closer to Him as a result. A book that I find helpful when I feel intense fear is "Praying Through The Psalms" by Clift and Kathleen Richards. It is a book with specific prayers relating to the Psalms dealing with everthing from happiness, thankfullness and joy to healing, deliverance, and fear. I have found this book to be my saving grace on the days that I feel most vunerable. I used to even take it in the car (when I drove, I only drive when absolutely necessary now) and have the kids read certain prayers out loud to me just to get me to where I needed to go.

I do hope you find some relief and that you are encouraged by the many others out there that feel the same way you do. This obviously won't help you physically feel better, but emotional and mental health are just as important. Wishing you well.

Thanks for the responses. To both of you: Of all the dx's given to you, have you specifically asked for tests to determine these or did the dr. you were seeing suggest that you get tested? Of all the doctor's I've been to (which really aren't too many) none have ever suggested any other testing or that something else might be wrong. All the dx doctor told me is that I "probably" have POTS and that he didn't treat it. I am being treated, so to speak, by my GP that has a few other patients with POTS, but even he has never told me much about it, nor has he told me what kind I have or suggested any other testing. I'm just wondering if there is something else going on and maybe there would be a different protocol with meds (even though I don't like to take them). I guess I just want my "old" self back. I should be thankful that I am not as dabilitated as some and focus on the good things and my good days. Sigh...

On my blog, I do have definitions via Dinet.org of POTS and Dysautonomia. Interestingly enough, I do not have OI, my blood pressure does not decrease upon standing, have never fainted, etc. In fact, my BP is all over the place (was at one time on meds for hypertension) and my heart rate fluctuates at any given time, sitting, standing or lying down. Basically, I feel as though I have the flu, a hangover, and menopause all at the same time. I have good days and bad days. It is seldom that heat bothers me as I love to sit in the hot tub and love even more to lay out by the pool. I live in a very hot, humid climate. Thus, my question. I'm so confused and have been for 3+ years now...

Might be a dumb question, although I always tell my gems that there is no such thing, so here goes:

What is the difference between Dysautonomia and POTS. I'm sure I could look it up, but just wanted a take on it from those with experience. Of all the doctors I have seen, none of them have ever explained any of this to me. I have read that POTS is a form of Dysautonomia and that Dysautonomia is when our ANS is out of whack. Anything else I should know?

Hope everyone is having a happy, heathly, symptom (or at least as much as possible) free day!!

Bebe

Welcome JLynne and Traceyf. I've been reading and following this forum for some time and just began posting recently. It is such a great feeling knowing that there are others out there that know exactly how you feel is such a comfort. I hope you gain some knowledge, support and encouragement through this forum. I find it relieving sometimes to just be able to commiserate with others, not necessarily to be a downer, but to just know that there are others just like you out there. I do (thankfully) have the support of my immediate family (hubs and kids), but quite frankly, no one knows what you are feeling except those that feel it with you. Here's to hoping you get some answers, encouragement and the ability to commiserate. Wishing you all the best.

Bebe

Totally feel for you southbel, I don't get much sleep either. I have an intimate relationship with Netflix as I am so tired after dinner and go to bed around 8:30pm only to watch Netflix until goodness knows how late. Last night I fell asleep sometime after 11pm only to wake numerous times in a night-sweat (everything drenched). I don't recall anything weird about my heart rate or anything though. This happens all the time with me. I fall asleep sometime in the early morning hours (the other night it was about 3am and I remembering thinking, I'd better get to sleep before the hubs wakes up at 4am to go to work!!). I hate it. I don't understand it and I too want it to STOP NOW!!

Haven't really spoken with the dr. about my sleeplessness because their usual response is...let's put you on so-and-so, and I don't want to be taking anything else. As you can see I'm on Metoprolol and Xanax. They ususally do what they are intended, but I still get tachy and still feel like poop most of the time. Last time I went in to see him (GP) he wanted to increase the Meto, but told me that I could pass out, so my hubs and I decided that I would stay where I was at and simply try to "live with it". I have never passed out before and don't intend on starting now.

I too am really sensitive to different meds. I am so afraid to try something different. I was put on an SSRI a few years back and had a terrible "flushing" reaction that I wouldn't wish on my worst enemy. It is so hard to try to find what works. Don't give up though! Try to keep on keeping on; I know it is so hard. I know it is so scary, but sometimes we just have to try and hope for the best. Remember, what works for some may not work for you.

I am going to try to see a new EP in the spring and I am going to bring up MCAS as I have many of the symptoms. No dr. has yet told me what type of POTS I have and even the dx dr. diagnosed me as "probably" having POTS. I just try to live every day as best I can and do what I can. It is so great that you have support in your hubby (as do I)! That truly does make such a difference.

I surely hope you find some answers soon. I know that sleep is so important.

Richest blessings to you for a symptom (or less severe) free holiday