bebe127

Thanks for the well wishes misstraci and Aimes I just hate feeling like I live in a state of fear all the time as well as on the verge of an ER visit every other day. I never go to the ER, because really, what are they going to do? The first time and only time I went they almost killed me with medication (if it hadn't been for the nurse who halved it, I probably wouldn't be here). I don't regularly go to the dr. as I don't have one that knowledgeable in POTS, so I only go to him for refills and physicals. I just feel like I'm on a roller coaster that won't stop. And my vitals are fine, nearly perfect some might say. I just don't understand why I feel this way. Plus the guilt over my family can be so overwhelming. I feel as though they work so hard to hold me up, but who is holding them up? I know I should eat better and exercise, but I feel so blah all of the time, I have no motivation for anything. I envy those on here that just fix it in their mind and work really hard to get better, to eat well, get enough sleep, exercise, etc. I want to be that strong person that faces adversity and says "I'm not going to let this beat me." I just don't have the energy right now. I do have hope, it's just real dim right now... Ok, I'm done whining for now, thanks again for listening/reading

I just don't understand how I can feel so crappy all the time, I mean every single day of my life! I've been in bed all day not feeling well, which unfortunately is not all to uncommon. I did get up to fold some laundry, put it away, and get the kitchen cleaned up before my hubs comes home. I just took my vitals and my bp was 122/83 and hr 97, so why do I feel so crappy??? One would think, I'd feel on top of the world. I haven't been getting much sleep and I know that could be a factor. I am dealing with some emotional stress, and I know that that can do me in. I haven't been eating well lately as I am nauseaus most of the time and just want to hurl at the sight or smell of food. I just want off this ride! Had a bit of a breakdown over the weekend and maybe I'm still in the midst of that. I just don't know anymore. I just don't want to feel this way I hate being so miserable all the time. Sorry for the rant

I've had GI issues ever since being dx. Mine gets especially bad when I am experiencing emotional stress which is all too often since I'm trying to raise two teenagers!! I've told my dr. and he doesn't seem to worry (why am I surprised?). I've had increasing problems of late, like, not feeling hungry, being nauseous all the time and not being able to eat a whole lot at one time. Every time I go into the dr. I've lost more weight and all he says is, oh, you've lost some weight. In fact the last two nights I've been a bit worried after dinner because I feel like I'm going to hurl. I don't, but the nausea is so strong. I usually just take some tums and go lie down. I wish there was no such thing as this blasted illness. Hope you get some answers and feel better soon.

It is so hard to explain to other people without feeling like a total hypo, and looking like one to others. I always have the driving issue. I don't drive very often and when I do, it's only to places I absolutely have to go to. It gets especially hairy when I have driven someplace and then have to explain that I don't drive often!!! I usually tell people that I've been diagnosed with a funky chronic illness that whacks out my nervous system and mainly causes problems with my heart and blood pressure. You're right though, Spinner, people usually don't understand and can't wrap their heads around it, and I think it's even worse when it is family. I just recently posted about a long lost cousin that wants to "get together" to catch up. I gave her the 'ol "don't drive much, long story" excuse, but told her I'd be happy to catch up over the phone. We'll see how that goes. This is one of many conversations I'm not looking forward to having

Altruism, Sorry I do not have any answers for you, however if you do get any, I might have to jump on your bandwagon I haven't had many of the tests that you have, but my results (for the tests that I have had) are the same. My bp does rise a bit upon standing (TTT), but all my bloodwork comes back normal (or so says the dr. I really have to look more into this), treadmill stress test says heart is in tip top shape, EKG normal, don't have blood pooling, don't faint, CT normal, etc. I have the same question as you do...If everything is so NORMAL, why do I feel so ABNORMAL all the time???? As I'm sure you've read from me on here before that no dr. has ever told me why or how I got this (mine was pretty much instant onset) or if I'll ever be rid of it. I never even knew that there were types of POTS until I began my own research, and my dx. dr. was under the impression that only florinef is used to treat POTS! Such a quandry... I do hope you get some answers and relief soon.

terradactyl, I have not experienced this, but probably because I stay away from OTC cold meds as I have read that they can influence bp. My bp fluctuates, but tends to be on the med-high side thus, I stay away from them. Wouldn't hurt to ask a pharmacist or your dr. just to be sure. Interesting though...

Thanks Mydoggielovesme2 and Issie, I agree with both of you. There are so many gimmicks, fads and whacks out there; I just wanted to know if anyone has heard of him and their thoughts on him. I think you are so right Issie! I for one do not have the greatest of lifestyles and quite frankly, I'm one of those that would rather take a pill than put forth the effort. I am awaiting the book in the mail and I'm going to read it and see what it is all about. Maybe it's about time I get of my rump and make some changes. My friend has been using his method (for lack of a better term) for a few months and has lost weight (which I'm not interested in), and she says she's never felt better. Her father has been on it longer and says he feels the best he's ever felt and he's 80! I am certainly not suggesting that anyone is sick or that we got POTS from what we do, not do, eat etc. I just thought it might be worth checking out. Thanks again!!

I'm so sorry you are having to deal with this. I too can relate to the whole "security blanket". My Big Handsome is mine and when he has to go out of town, it's the worst. Please know that you are not alone in any of this!! Don't you ever feel sorry either (I know fully that this is easier said than done!). This site is one of my saving graces and I feel so blessed to have this outlet for my feelings. It is so hard on many of us as the people on this site are those that know exactly how we are feeling, even if we have the most supportive groups, no one can fully know what we endure but those that endure it right alongside us. Know that YOU ARE NOT ALONE! I have many of the issues that you describe. Try to keep on keeping on, I know it is so hard at times. I am thinking of you and praying that you will find peace and comfort sooner rather than later. After all, we might seem helpless at times, but we shall never be hopeless. Things will get better!! {{HUGS}}

Here is a synopsis of his book from Amazon: http://www.amazon.com/Never-Be-Sick-Again-Health/dp/1558749543/ref=sr_1_1?s=books&ie=UTF8&qid=1361023749&sr=1-1&keywords=never+be+sick+again I've only read the first few pages and they are so me... Tell me what you think! Don't hold back, I can take it!! Living with POTS for 3+ years has taught me at least one thing..."what doesn't kill me only makes me stronger".

Here's an article that was sent to me by a friend. It is on "The Depression Epidemic". What do you think? http://beyondhealth.com/CustomPages/articles/DepressionEpidemic.pdfhttp://beyondhealth.com/CustomPages/articles/DepressionEpidemic.pdf

Anyone ever heard of this guy and "clean eating"?? Raymond Francis, an MIT trained scientist, a registered nutrition consultant, author of Never Be Sick Again, host of The Beyond Heath Show and some other stuff. Just wondering if anyone has any thoughts. Thanks

I'd like to know how they test for NE levels too. Like you, Orthohypo, my dr.s pretty much say the same thing and I have do to all the legwork myself including researching tests. I've only had normal blood panels done as far as my knowledge and everything pretty much results in normal levels. I always question in the back of my mind though the whole "in the box" theory that I have adopted. Basically meaning that everyone is different and what might be a "normal" result for the average person might not be "normal" for me. Such a quandry...

My POTS seems to have come out of nowhere. It began with me noticing my heartrate was higher than usual while doing minimal activity, like making the bed or letting the dogs out. Went to a cardiologist. and she told me I had high blood pressure, put me on meds., but never said anything about POTS or suggested Holter monitor or anything. I even had a treadmill stress test that came back with flying colors. A week later, I had a panic-type attack (EMT said, severe anxiety) and the next morning found myself in the ER and had a short hospital stay where I met an EP. He did a tilt table a few months later and dx. me with "what is probably POTS". He couldn't tell me how I got it or why and couldn't/wouldn't even treat me. He said it is a rare disorder and and he didn't know of any dr.s that treat it. Told me to "eat more salt, drink more water, and go live a normal life." That was back in 2009 and my life since has been anything but normal. Still on the search for a dr. that can help me. I didn't even know there were different types until I began researching on my own. I've been to a cardiologist, 2 EP's, and a neuro to no avail. My GP treats me now, but even he never told me there are types and/or which I have. No dr. has even taken my bp while lying down, sitting up and standing. I am thinking about trying a new EP in the spring that supposedly knows about dysautonomia. On a positive note, I can go into see him prepared with bunches of questions. I just hope he can answer at least some of them.

Just woke this morning with one. UGH! Mine are not violent though, disturbing none the less. It wakes me from sleep and I feel as though everything is vibrating on the inside. I listen/feel for my heartbeat and it is fine. Weird...

I'm sorry you are dealing with this. I think it's important to note that everyone is different and different medications affect people differently. The dr. that told you, you are just afraid to take meds is insensitive to say the least (I'd like to say worse, but am trying to keep this -pg ). For instance, I can't tolerate SSRI's but others seem to do really well on them. There are even supplements that I can't tolerate, but others seem to do well with them. You have to learn to listen to your body. If it doesn't feel right, it's not right. If a dr. can't/won't understand that you and only you know your body (you and only you know how you feel), I would seek out a new doctor. Everyone is different. Hope you get some answers and relief soon.

Had a positive TTT in 2009 although dx dr. responded with "you probably have POTS". I've never been tested (as far as I know for anything other than what is found on a normal "physical" blood panel) and those have all come back relatively fine. I've had blood in my urine for four years and anticipate this happening again when I go in for my physical in a few months. Is this normal? Some say it's fine, some say it's definately not fine. Whose to know??? We put our trust in all these dr.s that just go by what the book says when in actuality, all of us are different. Such a quandry... I do have a question however and I hope I can phrase it so that it can be understood. While I was in the hospital for my one and only stay back in 2009, I noticed my potassium was something like 3.2. I think it was on the low side of the scale. Here is my question, or somewhat of a question I guess: Since everyone is different, I find it so hard to relate to the "in the box patient". Maybe my potassium was on the lower end, and would seem ok to dr.s, maybe it is not ok with me. Maybe I function differently with a higher level? That's what my problem/question is...everyone is so different. What might seem normal to some, might be totally different for another. For instance, my mother (God rest her soul) always had low blood pressure, but seemed to function fine. My son has lower than usual temps (normal 98.6, son's a bit lower) does that mean that something is not right, since we don't fit the exact "in the box profile" of a normal person? I just don't know anymore... Sorry I couldn't be of more help...

I have flown numerous times since my dx. and one unfortunately was the last visit to my mother to be with her in her last moments on earth. I had my security blanket with me (aka Big Handsome) and my wonderful children. I was at peace and had, under the circumstances a memorable time not only with my mother, but with my siblings and father as well. My flights have never been abroad and never more than five hours in length. Even still, I've never had a problem. I usually double up on my anxiety meds and have a drink or two on the flight (always check with your dr. as some can't tolerate alcohol). I'm always fine. I've even gone on a (first) cruise with the hubby, had a few "bad" days but after getting my meds sorted, ended up having a wonderful, memorable time. We have an 11 day cruise scheduled for this fall and we can't wait. Yes, I freak out beforehand and right after arrival, but shortly I'm back to normal and everything is fine. Positive self talk...I will be ok, things will be great, I've waited for this and I WILL enjoy myself, and the like. Even though I have no desire to go to Europe, I do envy those that do. Have a wonderful time!!

I'm with you cindi75rose! I am not an alcoholic either, but I drink (beer) nightly and my husband and I agree that it makes me feel better. Don't understand it and quite frankly I don't want to at this point. Whatever will get me to feel better, if even for a shortlived period. My husband can always tell. I can have the crappiest of days, but when he gets home and we relax on the patio with our drinks, I'm always more relaxed and seem to feel so much better. I've have talked this over with my dr. I don't want to condone imbibing alcoholic drinks and what works for some might have a totally different affect on others. Know your limits and your body.

So sorry you are dealing with this on top of moving and being sick. Some people just don't "get it" and they never will, unfortunately, and that is not your fault. Maybe when things cool off you can show her a copy of "The Spoon Theory" to read and it might help her to understand better where you are coming from. I know how hard it can be sometimes. Hope you get to feeling better soon and best of luck with your move.

Thanks Peregrine, that is a great idea!! My husband always tells me that I have nothing to be sorry about, that this is something that I can't control. Say "I regret this" really nails what I'm feeling and is a truer (sp?) feeling. I agree, Aimes, sometimes the guilt is far worse than being sick for me too. Thanks to everyone for the responses!! Hope you are all feeling well today

I was diagnosed with POTS 3+ years ago and my life has never been the same. I want to ask a question that I'm fairly certain some of you have had to deal with and I want to know what you do in this case. I have a long lost cousin that I've been in contact with via FB. We don't really have much correspondence with her via FB, just the visual catching up so to speak. We grew up in the same area but rarely saw one another and I haven't been in contact with her or her family for over 20 years. Here's my quandry: She recently pm'd me and expressed that she would like to get together and gave me her phone number. Bit of background on me and my illness. As many of you know and have experienced, being dx with POTS can be devastating to say the least. I am not one to let people even know that I have this illness as I don't want pity or to be felt sorry for. Mostly just close family and friends know about it, and just because they know about it doesn't mean that they completely understand all it entails. They see me looking well, going on vacation, getting things done around the house etc., but what they don't see is the daily suffering that I endure due to having POTS. That being said, I don't know how to respond to this family member that wants to meet up. I only drive when absolutely necessary and I don't particularly have the energy to have people at my house. Do I explain all of this to her? Do I explain that I'd be willing to catch up on the phone or through email? What do you all do in situations like these without looking or sounding like a complete loony bin? Thanks for your input

Didn't help me. I was told that my bp went up during TTT and that the dr. wouldn't put me on florinef (he said that was the only medication to treat POTS) because it would cause me to have hypertension, which I had had in the past. My hypertension in the past had been boarderline high not high-high. Although the dx dr. did tell me to increase my salt and water, but didn't tell me by how much. So...I have a tendancy for boarderline hypertension and his suggestion is that I increase my salt??? Of course, this being all new to me at the time, I did as dr. said and then had to deal with higher bps and was put on Norvasc by a different dr. Then, bp went all haywire and was finally put on a BB and Xanax. In all honesty, I really think the Xanax is the only thing that helps me and keeps me somewhat sane. Go figure. I'm with Alex--listen to your body!!

Medication is the only thing that I can think of that might cause this, although I'm not on any of your medications, so it's best to ask the pharmacist or dr. My husband is on omeprazole 40mg., but has never experienced increased hunger, but he has issues if he eats too much too late in the evening. I have the complete opposite issue from you. I am rarely hungry, feel nauseas most of the time, have to force myself to eat and have lost 30+ lbs. over the last 3 years. Hope you find some answers