bebe127

Right there with you Freaked. I'm so sorry you are having to deal with this, and I know how wicked scary it can be. I never go anywhere without the Hubs (aka-my American Express card) Wishing you all the best. Be well, Bebe

Joann, So sorry you are going through this and in so much pain. I wish there was something I could do for you. Thankful that your parents are there to help out. Try to let SIL remarks roll off you back, I know it is so hard dealing with those that just don't get it. I hope you find some answers soon. Sounds like it might be hernia related to me, but I'm no doctor, and haven't played one on tv maybe have them check again? Chest x-ray perhaps, to see how big it is, or if is has gotten bigger? Best wishes for much better days ahead, Bebe

I have nothing to add Joann, but just wanted you to know that you're in my thoughts and prayers. Richest blessings, Bebe

I'm with lemons...I seemed to have gotten this after my POTS dx. I still have a hard time getting out. I am on Xanax for anxiety and it has helped me (everyone is unique). I even went to the hospital with the hubs today while he had an MRI of his brain (another story)., and will be accompanying hubs and daughter while she goes through Cardiac MRI/MRA on Thurs. (yet another story). What can I say, I've got to roll with the punches (as well as doubling up on the meds sometimes). I try to focus on what I can do. I made it to the hospital to support my Big Handsome and I count that as a true success Some people pray, sing, listen to music, meditate, etc. you just have to try to find what works for you. I've recently taken up drawing whimsical trees with Biblical verses imbedded in the branches, very relaxing for me (when my brain is cooperating with my eyes and hands!). We cannot control the physiological stuff, but we can try our best to control how we react and respond. I surely hope you find what works for you and you get some much needed relief soon! Be well, Bebe

I found the book, "The Anxiety and Phobia Workbook" by Bourne to be helpful, even though the therapist that recommended it was not. Best wishes, Bebe

I agree, he sounds wonderful. I live only 2 counties away (approx. 2 hrs.) have tried emailing him, but no response as of yet. I'm not sure that he treats patients unless they are within close proximity unfortunately.

Welcome and good luck with all your endeavors

Alex, Well you sure sound a lot like me...a medical mystery it seems. I will try my best to keep up the search. Thanks so much for your reply Be well, Bebe

Alex, Very prior to my TTT, I was dx. with hypertension (139/90something) and was put on 10mg of Norvasc. Had a treadmill stress test that I passed with flying colors, never even broke a sweat, the report even said that I had an above average tolerance to exercise. Then bam! a week later I had this weird panic-type attack that sent me to the ER. It was there that an EP saw me, told me to stop the Norvasc, that I didn't have high bp, put me on a 21 holter monitor (that didn't really show much besides some tachy) and a bit later I had the TTT. Within three minutes, my hr went from (I think) 60's to 150+ and even into the 160's at the end and I did not faint. He repeated the test two more times, same results. He said, "You probably have POTS" blah, blah, blah. I'm asking the question because I don't have the "typical" symptoms ie: blood pooling, syncope (even though only 30% suffer from this), hypotension, hypovolemia, and on and on. I have symptoms mind you. I'm still not sure about the whole orthostatic intolerance thing either. I would suspect that the literal meaning of this would be, unable to tolerate being upright. I do not have this problem. I've questioned for the last 4+ years if I really do have POTS. My doctor won't perform bloodwork for other things and I'm just about at the end of my rope. I would think that there are many things that could cause someone to be tachycardic, such as being put on such a high dose of Norvasc at the beginning while having (what I consider and from what I've read) really boarderline bp (btw, the dr. that first prescribed the Norvasc didn't even come to the hospital even after I called and told her what was going on and asked her if the meds could have anything to do with it). As well as having a rather low potassium level of 3.2 at the time, which, hello...can cause problems. Questions, questions, questions, and when I'm done with those, I think I have a few more! Sadly, nary an answer as of yet... I wish there was a doctor out there that would just come over for some coffee, I might even be inclined to make some scones or something and go over all of my history and help me to figure this whole thing out. If you know of a dr. willing to share some coffee, scones and health records while willing to help me put the pieces together, please feel free to pass on my information Be well!! Just trying to learn all I can.

Just wondering if there is such a thing as a false positive on a TTT?

Thanks for the input BBBear, I never know what to think anymore. No, they never mentioned it. Can low potassium cause hypertension? Perhaps that was my original problem, low potassium. Now I'm being treated for POTS (dx in 2009 by TTT) and I'm wondering now if all it was was low potassium to begin with. At the same time, too much potassium has its own problems I think. UGH! Just one more thing to bring up to the dr., although my latest labs showed that I was at 4.6 now. I never have cravings for anything these days and haven't for some time now. Looneymom, I was also just thinking about the little/no appetite thing and wondering if we don't really have an appetite because we drink so much all the time? Just something else to make me go Hmmm...

Looneymom, I know how your son feels as far as not having much of an appetite. That's why I began with the shakes (I give them to my kids also) because I'm fairly certain that I must be lacking in nutrients as I don't eat very much. I have my shake for breakfast, usually not hungry for lunch and then at dinner I only eat about a quarter of what I used to. No dr. has ever suggested taking supplements and I'm guessing from my labs...all looks well. I did try a few supplements a few years ago at the direction of my acupuncturist (at the time) like B Complex, D and something else I can't remember, maybe it was calcium. I made the mistake of beginning them at the same time and I felt worse, so stopped taking them. Anywho, wanted to let you know what a great mom you are in caring for your son. I do hope he gets some relief soon, as well as you Be well, Bebe

So glad to hear his pressures are staying up!! YAY

After reading all the posts though, it has got me thinking about my own potassium levels. Right now they are at 4.6 however when I was at the hospital (during my first and only stay following an ER visit with my first "episode" 4+ years ago) I was looking back on my records and at the time my potassium was 3.2. I thought it was kinda low at the time. From the above comments that seems pretty low. Could this be what started my whole thing??? and maybe it was just low potassium instead of POTS?? The EP or ER dr. made no mention of my potassium being low at the time and never mentioned it as being a problem. Things that make me go hmmmm...BTW, I've never been on florinef as my bp tends to be high and registered as rising during my TTT 4+ years ago. I have always had a yogurt and banana for breakfast for as long as I can remember and now I drink a nutribullet shake with yogurt, banana, spinich, carrots, blueberries and coconut milk in the mornings. Again, hmmmm....

Looneymom, I sadly don't have anything to add other than to tell you that I hope you get it figured out and your son is able to wean successfully.

I do so hope things go well for you!!

I live in a tropical climate. Our two seasons are wet and dry (currently in the wet season). I suspect I do have some heat intolerance as yesterday I was out by the pool (we currently have family visiting) and I can just look at my stomach and count my pulse, it was easily in the 120's. I try to stay hydrated and like many have mentioned, I too sweat like a faucet. I just can't give up the sun or the pool, it's the favorite place for hubs and me. Like I said, I try to stay hydrated and get in and out of the pool many times to cool off. I haven't figured out the whole hot/cold thing either. Yesterday, I put the ac down to 75 because we had many people in the house and ended up later having to turn it back up to 77 (which is where we usually keep the thermostat at year round) because I was freezing.

Mydoggielovesme2 I wish we could clone them too!! Thanks for your well wishes!! I think I'm going to have to get a bigger plate!! I just gotta go with the flow, I don't know what else to do, but to be absolutely grateful for what I do have; a loving supportive husband (albeit, not quite healthy at this particular time) and great kiddos (even though daughter is going through all this, she's such a trooper). Don't even get me started on the bills...apparently, I should've gone into Cardiology!! Sorry about your GP visit. It just stinks when they question our every question. Obviously, there are many doctors out there that need to read the articles that we somehow get our hands on, ie: Dr. Grubb, who outlines specifically the different types of POTS. If they could live in our bodies for one day, I think they'd run screaming for the hills I firmly believe that there are good (even great, dare I say) doctors out there. We just have to be patient and keep up the search. Hoping you have better days ahead {{Hugs}} Bebe

Nina, Gotta love the ol' "But you don't look sick..." comments . I'd love for someone to tell me how a sick person is supposed to look, maybe I should work on that Doctors in general (western medicine) are trained to treat symptoms, and that's generally what they do. Well, if I took a pill for each of my myriad symptoms, I'd be on dozens of pills. I'm not looking for a pill quite frankly. I'm looking for a doctor that can put all the pieces of the puzzle together and help me to figure out the best treatment plan. I have yet to find that doctor. Seriously, how can a doctor look at me and tell me, "I can tell just by looking at you that you don't have autoimmune issues." REALLY???!!! It's just so frustrating. If I had a dime for every time someone said to me, "Wow, you look great! You must be feeling better." or "Wow, you look great, have you lost weight?" I'd be rich!! I wish that doctors wouldn't put everyone into their little box or med. text book. Everyone is different and thus deserves to be treated as an individual. Once we get my daughter's issues straightened out, I am going to ask her Cardiologist for suggestions or referrals to someone that might know a least a little more than I do about POTS. We've been seeing this doctor for years now and I do trust her, although when she suggested that my daughter had dysautonomia, she just said to make sure to keep hydrated. If that's all it took for me, "just keep hydrated", I'd be healed by now and living a normal life. It might take a while for me to relax, but the search will continue; it has to for my family's sake as well as my own Thanks for your response! Be well, Bebe

Interesting flatout! I am definately going to talk to my daughter's cardio about it. Thanks for letting me know Be well, Bebe

I'm so sorry you are having to deal with this. I do hope that your dr.s can figure out something soon so that you can some relief. I too used to suffer from these quite often, in fact, these very episodes are what started my whole journey with POTS. I know how scary they are. The first time it happened, I had no idea what was happening and thought I was going to die right in front of my children. I'm 4+ years in and after many dr.s and medications, I seem to do better on Metoprolol (to control hr and bp) and Xanax (for anxiety). I take both 3x/daily and I double up my am Xanax if I know that I will be more stressed that day. It's been a while since I've had a severe attack. The worst is when I'm driving, thus I don't drive very much anymore. I definately know how you feel and they are quite scary. I used to lie down and read prayers and sing faith-based songs over and over in my head. I would pray as well. I would be absolutely exhausted after these episodes and many times fall asleep for hours. I would expect that many of us experience this due to adrenaline rushes as our body needs to recover from being overloaded for an extended period of time (kinda like after a seizure). I hope that you have good dr. that can help you figure all this out. Hope you get some answers soon. Best wishes for well being, Bebe

I too have wondered if I have the hyper type of POTS as I began this dreaded disorder with a bit of hypertension. I too, seem to be hyper sensitive and do much better if I'm doing something as long as it's at home, I don't go out much and don't drive unless absolutely necessary. Also, during my TTT my bp rose. I've only fainted once in my life when I was in my teens, it hasn't happened since (I'm 43 now) thank goodness. My problem is that I cannot find a dr. in my area that treats POTS per se. I've been getting treatment through my GP and am on Metorolol and Xanax. I would say that I've improved ever so slightly. My vitals are like a rollercoaster though and I still feel rather poopy most days. I has of late begun to exercise a bit and I do feel a bit better. I do Wii Fit Yoga, play Wii Sports with the kids and do 30-40 minutes of walking either with daughter or son a few times a week. I've only just begun, but I do seem to see a difference. I do take my readings every am and pm and record any symptoms and feelings on a chart that I made on Word. You can find a longer version on the blog Lethargicsmiles. It has been helpful to know and be able to look back and see what my readings were and how I was feeling to see if there is any correlation. Hopefully, this might be helpful to a dr., if I ever find one to help me Good to hear that you have some specialists on board and are working to help you out with this. Sorry, I don't really have any advice. When I used to get high blood pressure (although not quite as high as yours) the only thing that helped me was to lay down and rest and try to relax. Also, I find that with me, I was checking my vitals way too much and that was causing me more anxiety which I could only assume would be somewhat of a culprit in my high bp readings at the time. I was curious about the bp monitor because my husband has been feeling funky and having issues with high bp (which he has never had issues with before). We are going to the GP Friday to go over blood results. If there is nothing found, I want to suggest that maybe she prescribe the bp monitor for him just to be on the safe side. We'll see how that goes as she was not receptive last week with me when I asked her if we could check into some things concerning my POTS, ie: trying to figure out what type I have or if I have some type of autoimmune issue as well. We'll see how it goes. Hope you get some answers and relief soon

I going to consider looking into it again. I have used it in the past as an antibacterial and antibiotic. I'll just have to check with the dr. or pharmacist about interactions. Thanks for bringing this up! It's been years since I've thought of it Be well, Bebe

Hope it helps with you Issie!! I used to take it years ago when I was dealing with MRSA (well before being dx. with POTS) I wanted to add a side note for those on Metoprolol though. I wish I had an article to back it up, but to my knowledge (I believe I remember reading it on the pamphlet thingy the pharmacist gives with the meds) that people on Metoprolol should not eat grapefruits or drink the juice. Be well Bebe

Alison, I'm sorry that I cannot answer your question, but I am curious as to what type of dr. prescribed a 24-hour blood pressure monitor? I do hope there is someone on here that can help you decipher your results. Be well, Bebe