bebe127

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

Misstraci,

OMGoodness!!! You have said exactly how I feel, in fact, I was just getting on here to write a very similar rant and saw this and it pretty much sums up my life over the last 3+ years.

I so wish I had answers for you, but at this point, I can only commiserate.

I too, am so sick and tired of being sick and tired. I'm tired of life passing me by. I feel like such a disappointment and a failure to my husband and children. I just want to wake up one morning and this all be a sick twisted dream.

I so relate to your first paragraph (well all of them really). I question too how someone can feel so crappy and yet tests reveal nothing. I had a TTT and was dx with "what is probably POTS". I woke up this morning feeling my usual crappy self and took my vitals and they were fine (116/87 hr 77) I mean, go figure??? How can this be???

My daughter and I write a diary of sorts back and forth to each other just to keep in touch. I homeschool both my teens and after that and certain chores, if I'm up to them, I feel spent. So most of the time I'm either their teacher or the maid. I don't feel like I get to spend any time just being their mom. My daughter would love to just get out and go to the coffee shop or to the mall or anywhere really and I just can't do it. It kills me! For sixteen long years, I waited for this moment in time when we could go do mother-daughter things and grow our relationship and now that the time has come; it's just passing right by. She does a lot with one of her best friends and her mother. I have to admit, I am so jealous. This mother takes then all over doing all the things I long to do with my own daughter but can't. On top of it all, I feel like my son's life consists of virtual life on the computer, because he doesn't really have much of one outside that. I just want to cry, scream, beat up more than a few doctors and just crawl into a hole all at the same time.

"I'm lightheaded, seizury head feeling, tachycardia, my vision goes in and out...... I feel like I'm having a heart attack a lot of times and god forbid I ever did, I'd probably just sit there and take it because I've trained myself that these feelings are "normal" for my mystery illness. I promise you if anyone I know felt like I feel, they would be up in the hospital or laid up in bed yet, I somehow manage to zombie through a day" I swear, you must be in my head because this is exactly how I feel. The "seizury head feeling really caught my eye as I feel the same way at times. It is so hard to explain. I tend to ignore these feelings and count them as normal too, after all dealing with this for 3+ years I've just gotten used to feeling crappy. Nothing really surprises me anymore.

One thing that I've noticed over the years is that I have no motivation at all. I only do what is absolutely necessary of me and nothing more. I don't "want" to do anything. I was always a homebody type of person, but still went out and did things and had fun. Now, I have no desire whatsoever for anything and I mean anything. I have no desire to leave the confines of my room. I have no desire to leave the house. I have no desire to have desire, if that makes any sense. Anything I do, I have to force myself to do it, anything. I try, I really do try to focus on the positive, but sometimes the positive is so elusive, I think at times it's just gone. I so envy those people that are strong and courageous and just force themselves to be normal. I so wish I could be like that (sometimes I want to punch them too) and I probably can, but I just don't have the energy. It's like I'm just stuck in this sucky world with no way to turn it around. I have no one to talk to about all of these feelings, that's why this site is so great, but sometimes I feel like I just need to get out of my "virtual" world and DO something! I feel so selfish at times. I've tried therapy, but sadly, I think that she's the one that needed therapy

I don't know how I got this dreaded illness either and no one has even ever suggested finding out. I am considering a new EP, but do so with trepidation as so many of my appt.s end so negatively. I am also considering another dr., she is an MD by also works with homeopathic stuff I think. I have a friend that has gone to her. She doesn't take insurance, but if she can help, I don't care how much it costs. My friend says that she starts at the beginning and checks everything systematically so as to get to the root of any issues.

I've been dealt the anxiety, it's all in your head card way too many times as well. It's days like today that I begin to question everything, the dr.s, myself, my sanity. It's all enough to make a sane person go crazy.

My dear daughter just came in and asked if we could go somewhere...UGH! I hate that I disappoint her on a regular basis.

I hate it, I Hate it, I HAte it, I HATe it, I HATE it, I HATE It, I HATE IT!!!!!!!

I'm sorry I'm adding to the misery. Just know that you are not alone. I am going to try to keep on keeping on and I hope you do to; it's all we can do. Like my husband always tries to remind me: "This is not in my head, there is something physically wrong. We can't change it or control it or make it better, but we can choose how we respond and deal with it." Guess I need to listen to him more often

So hoping you feel better soon! {{HUGS}}

Kris,

I experience the same thing, though not all the time. It usually wakes me from a sound sleep in the early morning hours, but my hr seems to be fine. It has happened while on the couch as well in the evening and like you, I look to see if my dogs are scratching or otherwise shaking and he or she is not. It's weird. Don't know how to explain it and it is scary. I just started noticing mine a few weeks ago when it started waking me in the morning, but it doesn't happen every morning. I am not on your type of meds and I don't see a cardiologist either. I posted something about this too and from what I can gather, it might be adrenaline, although like I said, my vitals seem fine. Go figure. Just another wonderful symptom of POTS to deal with.

Feel better

Boymommy3,

Sounds all too familiar. So sorry you are dealing with this. Before being dx with POTS (just months earlier I had to call EMT's and had an ER visit with hospital stay) it was thought that I had severe anxiety (deduction from EMT). My story is too long to put on here, but if you go to my blog, you can read about it more there. Suffice it to say, I deal with anxiety on a daily basis now.

The only other experience remotely the same was back in 1992 after hurricane Andrew struck South Florida, to be more precise, my house. I didn't experience anxiety during the storm. It was three weeks after when we were finally able to get out and drive any distance. Since phone lines were down and we didn't have cells back then, I hadn't spoken to my parents who lived 20 minutes north of us. They didn't know if we were alive or otherwise. In terms of anxiety, I recall quite vividly driving with my husband up to see my parents for the first time since the storm. Remember, we hadn't spoken and they didn't know how bad it was where we lived other than to see TV reports. Our area looked as if a bomb had hit. As we were getting closer and closer to my parent's house I could feel my heart racing, and tingling all over that seemed to be climbing up my extremities and I was shaking uncontrollably. I only relay this experience because this is exactly the same feeling I had years later in 2009 right before I was diagnosed with POTS, however I had never experienced this before.

Through my reading and such, my understanding is that since our ANS is out of whack, we seem to be kind of stuck in a fight or flight response. I don't think POTS gives us anxiety although it does exaserbate it. I don't think one even has to be an anxious person, so to speak to experience anxiety once dx with any form of dysautonomia. With any dx of a chronic illness, I think I'd be worried if one didn't experience some sort of anxiety. Just the fear of the unknown is enough to send me spiraling downward. I know for me, I experience this daily to varying degrees. Sometimes I still question whether I have POTS or if it is just anxiety.

I have suggested on here before that when I was going to a therapist for a short while, she referred me to a book called "The Anxiety and Phobia Workbook" by Bourne. I personally do not think that in my case, I have an anxiety disorder at all. I think that my POTS is the cause of it, not the other way around. Anywho, this book proved to be quite helpful and even though this therapist needed a therapist, in my opinion, I'm glad she directed me to this book. It has lots of information and tips on how to deal with anxiety. Hope this helps

Here is a link as well to an article written by a fellow potsie and former Neuropsychologist that you might find helpful as well: http://www.dysautonomiasos.com/#!psychology-and-dysautonomia/c20ox

Feel better

Relax,

I'm so glad to see that I'm not the only one!! I was beginning to think I was weird...

Thanks Lyn, hope you are well

I seem to tolerate alcohol in moderation. In fact, after a beer or two, I feel almost normal. I've even asked my dr. why this is and he had no real explanation other than it is probably relaxing. My husband and I often talk about this and why it makes me actually feel better, that maybe it's the carbs or something. I don't know what it is, but I happen to feel better afterwards. This is not to say that I condone imbibing alcoholic drinks. I stick to beer only. Caffine doesn't seem to affect me at all, I have two cups each morning. The rest of the day, I drink water, gatorade, and propel. Don't know how to explain it. Everyone is different and in my case, moderation is definately the key. Also, I guess I figure if I'm going to feel crappy anyway, why not feel happy crappy!