bebe127

Right there with Julieph85...

okie, dokie, thanks

Don't know if this is where this should go, but thought I'd give it a try... Is it just me or does everyone have a problem with the "like this" button. Every time I try to "like" something, it says I've reached my quota for the day even if I haven't "liked" anything. Hmmmm.... Just wondering

4+ years here and nary an answer...I don't even know what type I have and no dr. I have seen will do additional testing for anything or refer me to someone who will. I'd have to go to Mayo or CC and that's just not in the cards at the moment. To this day, I still question if I even have POTS as my original dx. was "probably POTS". Basically, I've been told that I have a chronic illness and I have to learn to live with it. Hope you have better luck, have good doctors and get on the fast track to healing

Does anyone have any links or suggestions for recipe books for "Clean Eating". Maybe not even "Clean Eating" per se, just some suggestions on cookbooks for healthier eating?? We are very much the typical "Southern" family and our diet currently consists mainly of meat, potatoes, veg. and bread with a healthy dose of casseroles thrown in for good measure. My husband currently does all the dinner cooking and I am ever so grateful, although much of the time many of the dishes aren't as healthy as they could be. Thanks for any suggestions

I'm happy to report that I did 18 minutes of yoga on the Wii this am and then later in afternoon played with my son on Wii Sports for about 20 minutes We'll see how I feel tomorrow. I'm attempting to turn over a new leaf...we'll see how that goes Hope everyone is as well as can be expected!!

Thanks guys, Still sore today, but I am going to try some Yoga and maybe play with my son again hopefully to loosen up. I haven't seen a Rheumy, I don't even have a regular cardio. I am currently being treated by my GP but he only has a limited knowledge of POTS. Just saw another dr. in his office recently and she wouldn't even entertain the idea of testing for anything else. I've got to get back on with it and begin my search anew for a dr. that can help me. As far as the standing up part, I usually don't have a problem with that. Before I got sick, I used to be fairly active, walking, running, cycling, yoga, weights, but since all of this started, I've steadily gone downhill, plus I'm fairly lazy which doesn't help either and so much of the time I just don't feel all that well, so working out just doesn't make the list these days. I really just need to get off my duff and be consistent, even if it is only 20 minutes a day on the Wii, anything is better than nothing. I did do acupuncture a while back, but didn't do it for very long as my husband's schedule got in the way and because I rarely drive, I had to stop. Don't know if it would've helped had I been able to stick with it. Thanks again, Be well, Bebe

Thanks Naomi I'm going to try to keep on keeping on. Honestly, I don't know what I'd do without my husband!

Thanks Mighty Mouse!! I will ask my daughter's cardio when we see her next, probably some time in July. Hopefully, that will give me enough time to chillax I do know that dr.s are only human, but once in a while it sure would be nice to be taken seriously, at least an open mind to look into things and not just rely on basic blood work. Seriously, the dr. just looked at me and said, "I can tell by looking at you that you don't have autoimmune issues." REALLY??!! Just the good ol' "You don't look sick" coming to bite me in the butt, I suppose. I guess I should feel grateful that while feeling like total poop, I still "look" great ! LOL!!

Thanks girls. Good news...I'm not alone Bad news...I'm not alone I don't know if I have EDS as no dr. I've seen has suggested testing for it. I just went to my GP recently and made some suggestions and voiced my concern that something else might be going on (didn't mention EDS though) and got nowhere. I've done minimal research on EDS, so I really don't know if I'm a canidate or not. From what I remember, skin is thin and/or pale (not my case), flexible (I've always been quite flexible, but just thought that was normal; most people can put their ankles behind their head and do a split on the spot without warming up, right? ), stretchy skin (not my case). So I don't know. I'm not exercise intolerant, and don't really have tachy issues when I exercise. I'm really quite lazy and just don't like feeling so sore after doing so little. I think I'm going to try to be more consistent and see if that doesn't help matters. I've also had arthritis-type issues over the years, ie: injuring wrists, ankles, toes that later give me problems at times.

Hello all, Hope you are all having as symptom free day as possible. I have a question about muscle soreness after exercise. I must say that I'm not the most consistent person in the world and I haven't consistently exercised in over a year, other than to walk with my son around the block periodically. Anywho, yesterday he and I had a grand time playing Wii Sports. We only played for about a half hour. We bowled, played tennis and boxed three rounds. All in all, spent about 10 minutes with each game. Today, I feel like I've been bench pressing a semi! I am so sore. I was wondering if any of you go through this? I could halfway understand if I'd done weight lifting or some other type of heavy exercise, but the Wii, really ?? I think this might be part of the reason (other than pure laziness on my part) as to why I don't exercise regularly, even doing 20 minutes of yoga, again on the Wii, tends to make me sore for days. Just wondering if anyone else goes through this. I know that since I don't exercise regularly and I'm using muscles I don't normally use would most likely cause some soreness, but seriously, I got out of bed this am and could barely walk. Feeling a bit better now that I'm up and moving around though. Thanks, Bebe

Well, my GP appointment was a bust. I took in my binder with all my info, test results, articles, symptoms...you name it. The doctor wasn't all that interested. Don't get me wrong, she was a nice lady, but has a very limited knowledge of POTS. I didn't see my normal GP. OMG, I can't tell you how frustrated I am. Stick me with a fork, cuz I'm DONE!! I went in to get my Xanax refilled, which she did, but then I told her I had some questions about my POTS and recent symptoms. I expressed to her that I don't have many of the "tell-tail" symptoms of POTS other than tachycardia (which by the way, is certainly not my biggest concern). I told her of my suspicions that there might be something else going on, like autoimmune issues and could I be tested for that. She looked at me and told me I didn't have autoimmune issues. I asked her how she knows if I've never been tested for anything. She briefly looked at my last few years of labs (which are all routine labs mind you) and said that something would've shown up on those. She advised me to keep hydrated and cool and reduce my stress. REALLY!? So I told her that I guess I am just destined to live my life feeling crappy every day. She didn't have a response to that. I gave her my neatly typed word document table consisting of all my symptoms, delineated by frequency. She glanced over it and gave it back with no response. When I informed her that I wanted to know what type of POTS I have (if in fact I even have it), that maybe there is a different treatment if only we knew what we were dealing with. She said since I have tachycardia and all other heart tests were normal, it's safe to assume I have POTS. I felt like saying, “No kidding, my question is what type?" She would have none of it. She told me we'd look at my blood work results during the next visit (in 6 months) and go from there. Apparently she missed the part where I've been dealing with this for four years now. My husband was with me and I was near tears, but held them back. To my surprise, after the visit, instead of saying, I told you so, you'll just have to live with it, he told me that the next step is to ask our daughter's cardio for a referral to a cardio or EP that specializes in POTS/Dysautonomia (since she recognized it in my daughter by just reading her symptoms). I feel so done with it all at this point, I don't even know if I want to even consider seeing anyone else. I feel like I will just have to go on pretending that life is just freaking dandy and if I ignore it long enough, it might just go away. So much for my time and effort in compiling my notebook... I can only hope that it doesn't take me 2 more years to get up the courage to seek out a dr. that is willing to listen, have compassion and at least attempt to help me.

Sheila 1366, Yes, I think anxiety/depression is all part of Dysautonomia. That is not to say that there are those of us that don't already have anxiety/depression disorders. There is alot of information on here and discussions about the topic. I too suffer from anxiety and am on meds. for it. My anxiety came when I got POTS. Here are a few articles that I hope will help and shed some light: http://www.dysautono...autonomia/c20ox Hope you find it helpful, specifically: According to Svetlana Blitshteyn, Clinical Assistant Professor of Neurology State University of New York at Buffalo School of Medicine and Biomedical Sciences, “As a symptom, anxiety can occur in a number of common medical conditions. Furthermore, anxiety can be directly caused by various physiologic factors, such as hypoglycemia, hypoxia, hypercapnia, hypovolemia and hypoperfusion. Therefore, it should come as no surprise that patients with POTS, a disorder that is characterized by hypovolemia, orthostatic cerebral hypoperfusion and excessive rise in standing plasma norepinephrine, may experience anxiety among many other symptoms.” (1) Postural tachycardia syndrome and anxiety disorders. Editors Note by Svetlana Blitshteyn, Clinical Assistant Professor of Neurology State University of New York at Buffalo School of Medicine and Biomedical Sciences. According to Raj, et al, “Peripheral plasma norepinephrine (NE) is frequently raised in patients with POTS, particularly when upright, and many clinical features of POTS such as tachycardia, palpitations, shortness of breath, chest discomfort and tremor mimic the hyperadrenergic features of a panic attack.” (2) Psychiatric profile and attention deficits in postural tachycardia syndrome. Raj V, Haman KL, Raj SR, Byrne D, Blakely RD, Bioggioni I, Robertson D, Shelton RC., Journal of Neurology, Neurosurgery and Psychiatry 2009; 80: 339-44. There is also a book that was tremendously helpful to me: http://www.amazon.com/Anxiety-Phobia-Workbook-Edmund-Bourne/dp/1572248912/ref=sr_1_1?s=books&ie=UTF8&qid=1370178006&sr=1-1&keywords=the+anxiety+and+phobia+workbook I agree as well that this is something that should be discussed with a dr. Quite possibly medications could help. Hope you get some answers and relief. Be well, Bebe

So great!! What an accomplishment

Joann, Just curious, what flyer are you referring to that has something about seretonin syndrome? About the Xanax, for me at least, it has been a lifesaver. I would hazard to add that I think that is what helps me most. I am on .5mg 3x/daily but dr. said I could take another if needed. At times I take an extra in the am and it smooths me right out. I was even able to enjoy a Caribbean cruise a few years ago once I figured out I needed to double my dose in the am. This is not to say that I don't have myriad other symptoms, although my anxiety, I would say (depending on activity and/or stress) has decreased about 50%. Everyone is different, but I'm going to throw a suggestion out anyway...If your anxiety was more under control, do you feel as though the flare might be curtailed? Anxiety for me can be a tricky bastard, but once I am relaxed (via Xanax) I seem to do much better and am able to deal better with things. It doesn't make me tired or high or anything, just makes me feel better, more in control. FWIW, I was formerly totally against any drug of this sort, but I have realized over the last two years that if that is what is needed for me to live a relatively "normal" life, then so be it. I know too that Xanax can be addictive, from what I've heard, although I am very careful and only take one double dose (usually in the am) if it is needed, plus I'm on a low dose to begin with. I never go over that limit that I have imposed on myself. I know you've been having a time lately and I sincerely hope you are feeling better. Hugs, Bebe

Thank you Julieph85! Possible dumb question ahead How do the dr.s know if you need more floating around? I'm obviously fairly ignorant when it comes to synapses and whatnot, but what if someone has too much floating around already, would that cause problems, or does it not matter? Conversely, if a person didn't have enough floating around, then I would surmise that it would be helpful? Just trying to understand Thanks again!!

I've always had a question about SSRI's. Maybe if someone can shed some light...it can be helpful for andy as well as others. One of the EP's I saw (he concurred with POTS dx.) prescribed Celexa. He told me that many times this med. helps POTS, he said that he was not putting me on it for anxiety or depression although, it might help that as well (since one of my primary, at the time, symptoms I couldn't get a handle on was anxiety). I'm kinda flutter-brained right now, I hope I'm making some sense. When I asked what I should feel after taking med, he told me, I should feel like my normal self. As stated in above post, I had a terrible reaction. He had no explanation for my reaction and told me that I shouldn't have felt what I felt. Gotta love dr.s responses! Here's my question. Since SSRI meds are for seretonin, wouldn't it behoove the dr.s to give a test (if there is such a test) to determine our seretonin levels before putting us on this type of med? What if our levels are fine, would taking this med give us more than we need or less than we need in which case might cause some of us to have adverse reactions. Just wondering... It is all too common, in my case anyway, that dr.s are so quick to prescribe a pill without doing any type of testing ahead of time. I also know from experience that treating POTS is oftentimes on a trial and error basis. I just hate to see so many of us go through adverse reactions when, quite possible by doing a simple test would've determined that we, in fact, don't need certain meds to begin with. Am I making any sense at all??? Any insight is appreciated.

Andybonse, Firstly, everyone is different, and therefore reacts differently to different drugs. FWIW, I was put on Celexa (SSRI) and couldn't tolerate it at all. Had terrible flushing reaction and found myself on bathroom floor (or should I say husband found me) sweating profusely and couldn't move until hubs picked me up and put me on the bed. It felt like my blood was rushing through my body and I was jittery all over. Horrible feeling. Never took it again. Later, another dr. prescribed Prozac (SSRI) that I never took, she obviously hadn't read, nor heard me when I told her I couldn't tolerate SSRI's. The GP that I see currently put me on Xanax .5 mg 3x/daily (and one more if I need it) and for me, it has been a life saver. He told me that Xanax is a tried and true medicine that has been around forever with little side effects and it is fast acting. I've been on it for two years now. Again, everyone is different. If you have a good dr. that listens, make sure to bring up any worries with him/her. Some people have had good results using SSRI's, unfortunately, I'm not one of them. Hope you get some relief soon. Be well, Bebe

Hi Lieze, I'm fairly new here, but thought I'd put my (or shall I say, Michelle Roger's) two cents in on the ever-popular anxiety issue. The following is an article titled, Psychology and Dysautonomia, written by Michelle Roger, former licensed Neuropsychologist in Melbourne, Australia, and current dyautonomia patient: http://www.dysautonomiasos.com/#!psychology-and-dysautonomia/c20ox Hope you find it helpful, specifically: According to Svetlana Blitshteyn, Clinical Assistant Professor of Neurology State University of New York at Buffalo School of Medicine and Biomedical Sciences, “As a symptom, anxiety can occur in a number of common medical conditions. Furthermore, anxiety can be directly caused by various physiologic factors, such as hypoglycemia, hypoxia, hypercapnia, hypovolemia and hypoperfusion. Therefore, it should come as no surprise that patients with POTS, a disorder that is characterized by hypovolemia, orthostatic cerebral hypoperfusion and excessive rise in standing plasma norepinephrine, may experience anxiety among many other symptoms.” (1) Postural tachycardia syndrome and anxiety disorders. Editors Note by Svetlana Blitshteyn, Clinical Assistant Professor of Neurology State University of New York at Buffalo School of Medicine and Biomedical Sciences. According to Raj, et al, “Peripheral plasma norepinephrine (NE) is frequently raised in patients with POTS, particularly when upright, and many clinical features of POTS such as tachycardia, palpitations, shortness of breath, chest discomfort and tremor mimic the hyperadrenergic features of a panic attack.” (2) Psychiatric profile and attention deficits in postural tachycardia syndrome. Raj V, Haman KL, Raj SR, Byrne D, Blakely RD, Bioggioni I, Robertson D, Shelton RC., Journal of Neurology, Neurosurgery and Psychiatry 2009; 80: 339-44. Best wishes on your hearing Bebe

I deal with chest pain/discomfort practically everyday. No dr. has been able to explain it, except to say that my heart is fine. Hope you get some answers.

I've tried acupuncture. I don't really know if it helped or not as I wasn't able to do it for as long as I probably should have. I think that it is something you have to commit to and do for a while perhaps before seeing any real results. It certainly can't hurt and I would try it again, but I don't drive that often and having my husband take time off work twice a week was just too much for us at this time. I don't like needles per se (who really does??) but I have to tell you it wasn't bad at all, if you are going to someone that knows what they are doing. I think it is worth a try.

http://www.dysautonomiasos.com/#!psychology-and-dysautonomia/c20ox I know I've posted this on here before, but it is a great (in my opinion) article from a former Neuropsychologist, turned quite unwillingly Potsie. Worth the read. I know I can certainly relate to those of us who have had the suggestion that 'it is all in our head". I even had one dr. suggest that I had "situational anxiety" and to seek out professional help through a psychologist. I'm not even going to get started on the term "deconditioned". Does anyone realize that when the ANS system is out of whack, we shall most certainly experience anxiety? I know lots on here like to see publishings, but I just don't have the energy or the brain capacity at this time to look them up, sorry. It is our ANS that controls our anxiety, ie: fight or flight response. It is not at all fun to live in this state most of the time. It is not "all in our heads", it is not a case of which came first, the chicken or the egg. It is quite simply that having POTS can, in many instances, cause us to have anxiety, not the other way around. Again, sorry that I don't have the literature to back this up. And, quite frankly, who wouldn't have anxiety when they can find nary a dr. that knows enough about the ANS and can fully equip us with the knowledge we need to correct it so that we can lead normal lives???? UUGGHHH!!! Simply signed, Disenchanted, Discouraged, Disheartened and possibly (in their, the above authors of original article) Delusional

I'm sorry to hear about your son. I hope you find some answers and relief soon. Fortunately, my daughter does not have many of the symptoms I have. The dr. said that she had dys. just from how my daughter described what her symptoms have been as of late. Mainly just tachy at the moment. This is the least of our worries at the moment however, she has congenital heart issues that could be causing complications. She's a trooper though. She has some more testing to be done and we're hoping all comes out well.

It was just suggested that my daughter has dysautonomia at her recent pediatric cardiologist visit. I told the dr. that I had been dx. with POTS and she said, it tends to run in families.

I know it's hard, but hang in there, my friend! Sending {{Hugs}} your way I wish they were the real type. Chin up, things just have to get better!! Bebe