bebe127

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.

YIKES, Hippychic, I had no idea of the cost. WOW! For me, personally, that is way too much money to gamble with for something that might or might not work.

Not sure why this posted the quote twice...I'm so computer illiterate!

I agree with Sue1234. You only see the people singing her praises because that's all they post about on the website. I spent two weeks there and have since tried to be consistent with the home care, but have had zero symptom relief with POTS. I know two other girls that had the same results, but you don't hear about us. I get immediate symptom relief with gluten free diet and exercise so not sure what that says about my case.

I think it's worth a shot if you have the time and money.

I agree with you and Sue. I should have considered that...naturally they would only post the positive cases. So sorry for your experience. With POTS, everyone is so different with so many different symptoms and thus, different treatments; what works for some won't necessarily work for others. Once you find relief, I think it is important to stick to what works for you. For me, nothing seems to work. I have considered going to the treatment center as my parents live in Dallas. You mentioned cost; If I might be so bold as to ask what is the cost and does insurance cover it? Here's to hoping you feel well.

My friends and family know about my illness, though I don't discuss it on FB unless it is through a closed POTS group that I am a part of. Even though friends and family know, they still really don't understand, but at least most of the people on the closed groups do and it's nice to know I'm not alone and can talk to someone about how I'm feeling.

I have heard a lot about her and the center. All good things. She is in the Dallas area. They do have a FB page if you are on FB, I believe it is under Pots Treatment Center. Even the woman who wrote the book POTS: Together We Stand took her daughter (she and her children have pots I think) to the Pots Treatment Center and she's been singing its praises ever since. Check it out on FB. Hope this helps:)

Most days I feel crappy and hate that my children have to live in my "prison". A lot of people say they have good days and bad, mine are usually bad; it just depends on the degree. I try to be positive, but unfortunately you've caught me on a bad, pity party type of day. Anywhoo, I'll tell you my typical day...

I homeschool my two highschoolers. Since they are both teens, they are pretty self sufficient. I used to teach in a public school many years ago, however haven't worked since my first child was born. I was diagnosed with POTS almost three years ago. Haven't really found any answers or treatment. I am on meds, but mostly still feel like poop. I digress...back to my typical day... I wake anywhere from 7am to 8:30am (don't set an alarm as there is no point anymore). I have a cup of coffee while I clear email and check web. I take meds at 8:30am. I eat a yogurt and a banana every morning as it is the only thing that doesn't make me want to hurl. I get the kids up and we begin school. I do math with them individually, and then they are off to work independently. While they work, I check papers, update transcripts and gradebook, and generally make sure that the kids are doing as they are told. I clean up the kitchen, begin laundry (two loads, twice a week) wash, fold, put away. I work on the poetry class I teach at a local homechool coop. I teach every Friday for an hour for 12 weeks. My children attend four classes each for two semesters of 12 weeks. I don't drive very often, or never if I can help it. My DD is driving age, so she usually takes us where we need to go. I do spend much of the day in bed (we even do Math in my bed). Lunch usually consists of leftovers or whatever the kids can scrounge together. Sometimes they cook something together. I feel nauseous most of the time and I just eat to live. Nothing ever sounds good and I rarely have an appetite, so lunch for me is hit or miss. I take my afternoon meds.

I am usually busy on the computer with school most of the day. When ever my hubby calls to tell me he is coming home (anywhere from 12pm-7pm) I clean up any mess from the day, straighten the schoolroom, livingroom etc., and take my shower. Hubby usually takes care of grocery shopping and meals, I am very blessed that way:) Many times he and the kids do a bunch of cooking on the weekend and either freeze it or put in fridge so I just have to stick it in the oven at dinner time. Sometimes I can manage a crock pot meal or make homemade soup.

We eat dinner around 7pm. We watch some tv and about 8:30pm, I go to bed. Take evening meds at 9:30pm. I don't sleep however, I watch Netflix (unfortunately, sometimes until 2am). I am exhausted, but can't get past the tinnitus (constant crickets) in my ears so that I might sleep. I finally turn off the Nook when I can't keep my eyes open any longer. Then, before I know it; it is 7am and time to start all over.

I've always semi joked that it is a good thing that I am a stay at home mother that homeschools. If I wasn't, I'd have to quit my job and homeschool the kids! Kudos to those of you that continue to work and/or raise children.

Trying to stay positive and not go crazy...

(can't find spell check, so please forgive any errors:))