bebe127

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

Thanks issie, I'll check into it!

Issie: My son was born with both feet clubbed. When I went for the first sonogram, they discovered this, so at least we knew what was going on, but we didn't know why. He has no other issues at all. The doctors had informed me of my "options" upon learning that he had this deformity. I made the doctor actually say "abortion". I am not mentioning this to provoke any personal decisions on anyone's part, suffice it to say it was NOT an option for us. My hubs and I firmly believe that God does not make mistakes. The doctors gave me all kinds of reasons why this might have happened, none of which I believed. Bit of background...After my daughter was born, 18 months earlier, I had developed scar tissue which (I think) caused my uterus to become U-shaped (instead of a big open space for which a baby to grow). I also seem to remember having a weird uterus before having children, although I had no complications with the birth of my daughter. The doctors told me that my son could be born retarted as he also had a high average of brain fluid and told me to have my Pediatrician to make sure and check his brain ventricles at birth. Again, the "option" was not an option for us as my husband and I would accept any precious gift the Lord decided to bestow on us with pleasure and joy. The dr.s told me it could be hereditary, although no one on either side had evidence of clubbed feet. They also told me it could be neurological, that didn't pan out as well, because big heads run on my hubby's side and thus the extra brain fluid (these were the pediatrician's words upon seeing my husband). My son had a perfect apgar and was perfectly healthy except the clubbed feet. My explanation, although never coorborated by a dr. was that since my uterus was oddly shaped, my poor peanut of a son (or monkey as we affectionately called him because the soles of his feet were so turned that they faced him) didn't have enough room to fully form during the first three months. Many times this is seen in multiple births (normal uterus I suppose), just not enough room to grow. As I said, he was casted at six days old for the first nine months and then he had surgery on his right foot where they extended his achilles tendon and the tendon of his big toe. His only issue now is that his feet get tired if he walks too much. He's a trooper! Thankfully, we chose to not use our "option" as the world would've missed out on one of the most kind, intelligent (leaning toward a degree in Nuclear Physics or Engineering when he enters college in a few years), empathetic, sympathetic, sensitive, loving young man I have ever known. We are truly blessed. k&ajsmom: I too bruise like a banana. I am also very flexible with some double jointedness. Never been tested for EDS, nor has any dr. even suggested it. I don't really have any issues with anything accept the POTS. I am going to go see a new EP hopefully in the spring and take my daughter to her cardiologist to see if there is any connection with her heart deformities and my POTS. Maybe we'll get some answers. Hope you all are well and have a symptom free holiday!!

I do feel for you k&ajsmom and hope that you get some answers soon. My daughter (16) has a VSD and a PFO (from what I understand, they are murmurs). She too as of late has been complaining about not feeling well and that her chest feels "fluttery". Sometimes I think she could be dehydrated which of course exaserbates the issue. She has regular visits to her cardio, but they are every three years now, they were every two since she was three years old. She is scheduled to go in soon and I will definately ask about POTS running in families. She might even need to see a new cardio (that I just learned about in our area) that specializes in Dysautonomia. I'm not going to get my hopes up too high as I've been to doctors that claim to be specialists and then they just let me down with the all too familiar "eat more salt, drink more water". I do hope and pray that you find the answers that you are searching for. How scary for you, I'm so sorry Ashelton80, my son had night terrors for the longest time when he was small, he is now a teen and it rarely happens. The doctors told me he'd grow out of them and sure enough he did, for the most part a few years ago. On a bad night, my husband and I would be up some 20 times with him trying to calm him down. A good night was about 10 to 12 times getting up. Then he took to sleepwalking and we had to put locks up top of the exterior doors. He is doing much better now. Still gets up occassionally, but not all crazy-like. I always thought that it might have something to do with a traumatic experience when he was born. He was born with club feet and had casting done at the age of six days old that lasted for the first nine months of his life. Every other week I'd have to take him to the Children's Hospital and have the casts removed, his feet manipulated and then the casts went back on. He would cry and cry. It was horrible. Once I asked the doctor if he was in a lot of pain and the doctor told me that since nothing has touched his legs during the months of casting; every time the casts came off and his feet would have to be manipulated it was like being stung by thousands of bees! He had surgery on one foot to correct his tendons at age nine months. Now he is perfectly fine, although his feet do get tired easily. I still think that his terrors might have had something to do with that. Back to the original post. k&ajsmom, I do hope you find answers for your gems and relief for yourself Stay strong!!

Good on you!! What an encouragement to us all

I've lost weight. Over three years ago I started a "diet" so to speak (really it was just eating healthy and exercising) and I used to ride my bicycle nine miles a day 4-6 times a week. I loved it. I lost about 12 lbs. Then I was diagnosed 3+ years ago and I've been losing weight ever since. Not rapidly mind you, but I've lost about 25-30 lbs. total over the last three years. I'm not complaining too much as I am down to a satisfying weight for me. I am a bit concerned though, because I have done nothing purposely to lose the weight. I've tried exercising, but that is a hit or a miss, mostly a miss as of late. As a result of being nauseous much of the time and having little to no appetite, I have to force myself to eat. I eat a yogurt in the am, something little at lunch and eat dinner that the hubby makes at night. I have also found that I can only eat about 1/4 of the amount of food that I used to eat. I get full very easily and don't feel all that well after a big meal. I'm sure that is why I am steadily losing weight. Dr. doesn't seem too concerned as I am still at a healthy weight for my age and height (43, almost 5'9", 138). 3+ years ago I was up to 166 and a size 12, now I'm down to a size 6-8. Again, not complaining too much.

I don't know if you'll fall in love with it or not. It's just my personal story about living with POTS, but you are welcome to give it a look http://sometimeshelplessneverhopeless.blogspot.com/ I'm very new to this and quite computer challenged, still learning as I go.

Well said. I am a newly formed blogger myself and have this very idea on my "about me" link..."trying to not let it define me." I am still in search of the elusive answer. Like you said in your blog, "How do you not allow yourself to be defined by something the seeps creepily into every aspect of your life?" Again, I wish I knew the answer. I too have printed out "The Spoon Theory" and as well, my husband had an "ah-ha" moment. He now occassionally asks me, "How's your spoon count today?" I try hard everyday to look on the brighter side and to rely on my faith, although I am not naturally an optimistic person, so this can be a real challenge some days. I guess we have to realize that even though we have a chronic illness that has invaded, and at times stripped us of our livelihoods; this is something we cannot change. We can however change the way we react and respond. I once read a book, Happiness Is A Choice by Dr. Frank Minirth and Dr. Paul Meier (it's a book about the symptoms, causes and cures of depression and I read it way before I was dx), however after reading it, I realized that happiness is a choice. Not only is it a choice, but it is MY choice. I've liked what I've read so far on your blog and am going to continue to follow it. Keep on keeping on As I always like to say: At times we might feel helpless, but we should never be hopeless. Blessings to you!

Thanks so much Katybug and Christy!! I will definately look at the video. Might I ask, how did you even know to look for this? Did a doctor suggest it or did you do your own research and go from there? Again, thanks a bunch!! This is exactly why I love these forums, so many questions, answers, and directions to go. It is such a blessing to know that I'm not alone As I've said before, I was diagnosed with POTS via TTT 3+ years ago, however no doctor (not even the dx one) has really treated me, with the exception of my GP (began seeing him approx. a year or so after being dx) who has about 5 other POTS patients. Even still, no doctor has ever looked into why I have it or how I got it or even if there are underlying issues nor have they tested to rule other issues out. It has all been left up to me to research on my own and figure this whole thing out. Blessings to you both!!

Same thing happens to me all the time. Sometimes I just have to grin and bear it. It's a good thing that I am a natural home body, but it does wear on my children (whom I homeschool) and my husband. I was put on Xanax a while back and sometimes I have to double the dose before I go anywhere, whether I'm driving or not. Sometimes I get stressed out days before I know I have to go out and that just makes it worse. I don't have any answers really, like I said, most of the time I just have to grin and bear it. Firstly, I never go anywhere by myself. Since being diagnosed with POTS, I find it too stressful to drive and I still get very anxious about going anywhere. The only thing that slightly helps is when my security blanket aka: husband is with me and even then it takes me a while to fully relax. I try to tell myself, what's the worst that can happen? I might have an episode, but my (teenage) children are always with me and can either call their dad or the EMT's if necessary. I also try to tell myself to relax. I know it seems easier said than done. I used to carry a "Praying the Psalms" book in my car and have the children recite certain prayers to me while I drove; it was truly a blessing. Try to find what works best for you. A little note on seeing a therapist. I tried this once and it was horrid! However, that is not to say (at all) that this cannot help. You just need to make sure you find one that fits what you are looking for and dealing with. When I went to one, she didn't know what POTS was and was more of an anxiety therapist which I was all for until I had to hear all about HER anxiety during every session. I still think I should try again, just haven't gotten the courage up yet. Don't dispare though, it might take a few to get to one that you really connect to. I think it is worth a try as well. Hoping you get some answers.

I did find the following article on MCAD: http://www.jhoonline.org/content/pdf/1756-8722-4-10.pdf Interestingly enough, I found that I have most of the frequent signs and clinical symptoms found in Table 3, however many of them are the same for POTS. Hmmmmm.....any thoughts??

Might be a dumb question, but I'm going to ask anyway. I have printed out some medical journal articles on MCAS that I have yet to read (but will shortly). My question is...what is the correlation between MCAS and POTS. From what I've read briefly MCAS has to do with allergies and histamine, is that correct?? Can POTS symptoms be from MCAS or the other way around?? Another dumb question...could I take zyrtec/zantac and be free of this craziness?? I certainly do not mean to minimize anyone's symptoms and/or treatments and hope I haven't offended anyone. Like everyone else, just trying to search for answers. BTW, what does a "classic MCAS case" present with? Ok, I'm going to attempt to educate myself on MCAS now.

Westernmass, Been there, done that, and ready to get rid of the t-shirt!! I too was told basically the same thing, my EP's direct quote was "Eat more salt, drink more water and go live a normal life." Seriously?!?! Go live a normal life...I wouldn't wish living with POTS on anyone, not even my worst enemy, but there are times when I come sooooo close to wishing it on some of these doctors. Just one day, one day to see how it feels to feel so helpless at times. UGH, I feel for you. Nevermind, he neglected to tell me how much salt and how much water!! He also told me that I couldn't be on meds because my bp elevated during my TTT and since the "only" medicine to treat this syndrome is florinef, he didn't want to risk putting me on it in case it raised my bp too much and caused me to be hypertensive (good thing, in hindsight). I later found a GP close to home that treats others with POTS. He put me on a BB and Xanax. They kinda do what they are intended I suppose, however I still live with the myriad of symptoms daily. And what in the world..."Where I was told pots is a "hormonal young woman" thing, "no one over 40 has this" ??? I am here to tell you, I am a 43 yow that has had this for 3+ years. Do these doctors even read journals??? Do they research anything??? Do they have internet??? I'm with you, Westernmass, you probably could saved a bundle!! Sure hope you find some answers soon. I too am still on the quest to find a non-idiot doctor!! Feel better Even though we may feel helpless at times, we should never be hopeless. Bebe

Ashelton, I'm so sorry you are having a time of it. I don't have any advice, but just wanted to say that you sound so much like me, although I have made no changes in diet. I was diagnosed 3+ years ago as well with POTS. Don't know what kind or how I got it and no doctor has ever suggested any tests to find out. I am not educated enough (even though I try to read as much as I can about this) to know what tests to ask for. I do know that like you, when I exercise, I feel better, even my husband thinks so. Though through the years exercising has dwindled as I am so fatigued after just a short yoga and I'm so tired and feel yucky all the time. It's so hard to get up and do anything. I also suffer from migraines and have for years. Been to several doctors to no avail. No one can tell me why I get them and I haven't found any medication that even touches them. I currently have one now. I haven't had one in months and I still can't figure out the trigger for them. I also have lost weight because of this, although I think it is the lack of eating that is causing mine. I just have no appetite and much of the time feel nauseous, so I don't eat very well as a result. About the MCAS, is this Mast Cell something or other? If so, how is one tested for it? I am thinking about going to a new EP in the spring (the first doctor I have found in our area that even knows what Dysautonomia is as he diagnosed and is treating a friend's daughter) and want to compile a list of my symptoms as well as questions to ask as to what type of POTS I have and hoping there is a better way of handling whatever it is that I have. I am sick and tired of being sick and tired. I am sorry that I don't have advice, but want you to know that I know how you are feeling and hope that you get some answers and relief soon. Here's to hoping you have a symptom free day Bebe

I get the same type of feeling although never thought to describe it as you have. Mine feels like my heart does a "flip-flop" in my chest, one or two powerful, deep, slow ba-bangs, and I can feel it in my throat and yes, it takes my breath away and I cough. After a few long, cleansing breaths, it kinda goes away. It is frightening though. Mostly it happens to me at night when I am on my left side, but I had it this morning once after I got up and was sitting checking my email. Now that I think of it, it happens more than not at night. Never have asked the dr. about it. I seems to me that maybe my heartrate goes too low and that is my body's way of telling my heart "hey!! wake up and pump!!" I'll definately ask the doctor about this the next time I'm in. This is the first time I've heard it explained this way and it seems exactly how I feel sometimes. Sorry, I can't help, but I'm going to keep checking back just in case someone knows what this is and what is causing it. Feel better

This happens to me too, especially at night. I too am constantly pulling the comforter up and pushing it down. As a result, I don't get much consistant sleep. Luckily for me, my hubs is a heavy sleeper. I also asked my dr. about menopause, am tested each year and results come back the same, "you are far from it". UGH!! It is a pain. Sometimes I can just be sitting on the couch and I'm cold and the next minute I have sweat dripping down my neck and back. I don't get red though, that I know of. Don't have any answers, sorry, but sure do feel your pain.

I have a hard time falling asleep and as a result have an intimate relationship with netflix on my nook. It takes me several hours to wind down and I usually watch something light and funny until I can't keep my eyes open any longer. I also have terrible ringing in my ears and that makes it hard to fall asleep. Once asleep, I often toss and turn all night waking up each time; I don't get much sleeep. I too have some kind of spasm at times. It doesn't happen all the time and mainly it happens at night. My heart feels like it is doing a flip flop in my chest, usually only once or twice at a time and it is scary. I try to breath deeply and it goes away. No pain or anything, just feels like it is doing a hyper pump and it can be very disconserting.

Yes, and as stated above, I think many of us have. I remember crying 1 1/2 hours home from a follow up visit of a supposed "Pots specialist" and that said that very thing. I had been diagnosed by an electrophysiologist locally when I was in the ER three years ago, but told that he did not treat POTS. Told me to increase my salt and water and go live a normal life. I then sought out a second opinion. That's when this second Dr. told me that there was nothing he could do to help me and that I should find someone closer to home and think about seeing a therapist. Said that I had anxiety disorder. I mean, come on, anyone with half a brain and a computer know that your fight or flight response is controlled by your ANS. If it is not working properly then, it is not out of the question that this disorder can present with and elevated anxiety level. My original dx Dr. actually went on the DINET site and printed information for me to take home. He told me that not many Dr.s are aware of this disorder and that even fewer treat it. My life has been three years of **** most days. It has changed my entire life, I am sadly no longer the person I used to be which was a person that rode a bicycle 9 miles a day 5-6 days a week, a person that was active in my children's lives (as I homeschool) going on field trip after field trip, having people over, going on playdates. Now I'm reduced to being a hermit most days, only getting out on Friday's to take my kids to a homeschool co-op (and that's only if I double up on my anxiety meds). My oldest is driving now, so she now has the burden of driving me around, but that is only on days that I don't feel crappy enough to stay in bed...I digress, in answer to your question, yes, I think many of us have been told "it's all in our heads". I think Dr.s can be so insensitive at times when they don't understand what it is that they are dealing with. Most Dr.s (in my experience) have this little box, called their medical textbooks, and if you don't fit into it/them then your ailment is considered "all in your head". It is a real shame, I think, as well as a disservice to patients out there with this and other similar disorders. I agree with K&ajsmom, keep trying and continue to be your own advocate.