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bebe127

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Everything posted by bebe127

  1. Joann, So sorry you are still dealing with this. As you know, and you have written, fear can exaserbate things. I had a really hard time at first with fear, and still get intense fear at times still, although I don't have the same symptoms as you. Are you on any type of anti-anxiety meds, if you don't mind me asking? I'm on Xanax .5mg 3x/day and I take a double dose in the am if I know that I have things to do that are going to exaserbate my anxiety. For me and my situation, it has been a life-saver (not advocating as a magic pill, just telling you what has worked for me, and everyone is different). Before the meds. all I could do was try to relax by singing a hymn or song over and over and reading comforting verses over and over. I have a book called "The Anxiety and Phobia Workbook" by Bourne that has helped tremendously, even though I don't have true anxiety or phobias (it's all due to a whacked out ANS) , it still has some really good suggestions. I do hope you get some answers soon. PM me if you want to vent or just talk. Well wishes going out to you Hugs, Bebe
  2. Looneymom, You are such a great mom and really seem to take such good care of your son. I hope you get some answers for him and he can get on with some semblance of a normal life. My daughter (16) too has been having some of the same issues as me. She unfortunately has other congenital heart issues and we just went in to see her ped. cardio. I didn't mention at first that I had POTS, as I wanted to see what her dr. said. She in fact, said that my daughter has dysautonomia (didn't use the term POTS), that's when I piped up and told her part of my story. The cardio said that many times it runs in the family, said that this is the age when it usually begins, and told my daughter to drink lots of water. We didn't go into too much detail about the dysautonomia though because they saw something odd on her routine sonogram that has the dr. worried currently. She took my daughter's sono results to a cardio conference at our Children's Hospital and put her on a 30 day monitor (she is currently hooked up and not liking it). She doesn't seem to have all my symptoms (PTL) but she experiences tachy after hot showers and general malaise at times among a few other things. She really is a trooper and refuses to let it stop her. Currently she is worried about this other issue dealing with her congenital heart issue and having to go the the Children's Hospital for more tests. Her dr. wants her to get an MRI in the near future, we are just waiting on the call for them to schedule it. She's been fine as of late, not experiencing many symptoms. I on the other hand feel that my issues came on rather quickly with the panic-thing in 2009. I might have had other symptoms over the years that I glossed over because generally, I felt relatively healthy prior. I didn't have a virus or flu before this all hit. I did have MRSA back in 2000, but I don't know if that had anything to do with this. It's really only been after my dx. that all these things came together and I've been going downhill since. I am truly thankful that I can still do many things and I try to push through for my family's sake. I just want my old life back. I'm tired. I have to strategize everything I do, all the time. If I teach a class on Friday, I know that I cannot do anything else that day. If I do laundry one day, I know that I can't vacuum the same day. My husband always asks what is on schedule for the day and quips "make sure you don't wear yourself out, so there are some spoons left for me." Hopefully, with this appointment with the GP at the end of the week, he'll be receptive to some of my questions, concerns and suggestions. We'll see what happens. If not, I do have other dr.s I can fall back on and try to see them. Trouble is that they will be new dr.s that I have to start all over with. Oh well, I just want to get better, so I suppose I'll just have to do what I have to do. Thanks for your respose Best wishes for you and your son! Bebe
  3. Interesting you mention this Katybug, but sorry you are having to go through it. I have as of late been experiencing something similar. My sensation is like a tingling, almost "goosebump" type feeling on the left side of my head. It happens from time to time (and has been happening with more frequency lately), but I've also experienced it in different areas of my body, like in areas of my arm or leg. It doesn't hurt, I definately know when it is happening, and it is something new to me. It reminds me of when I was little and I'd get a "chilly-willy" and someone would say, "oh, that means someone just walked over your grave" not to sound morbid, it was just something that people would say about that sensation. Mine almost feels like that sensation when a part of the body "falls asleep", but it's only for seconds, then goes away. Does your sensation hurt? or is it a matter of you noticing it when it happens? I'd be interested to know if you find anything out. Just since writing this response, it has happened on both sides of my head and on my left arm. Hmmmm... Be well, Bebe
  4. Here is a video about Concierge Medicine: **I'm not for or against it, just trying to clarify.
  5. Joann, Sounds good to me!! At this point, I'm willing to do just about anything (emphasis on just ). I'm reading all about it and currently watching a PBS Youtube video. I've read that since it has come to the forefront of treatment recently, sometimes it can be reasonable as far as $ goes, depends on the dr. I suppose. The only thing is with this particular dr., he is about 1.5 hours from me. I already wrote an email to see if he consults with other dr.s. We'll see what comes of it. I'm just thrilled to the gills that I've found a dr. within a reasonable distance that even knows what POTS is and treats it to boot!! Sure hope you are feeling better Be well, Bebe
  6. Dr. Santa Maria is located in Boca Raton, FL. He is a Concierge Dr. (sorry, you're on your own with this one ). What left an impression for me was that he treats POTS/Dysautonomia, something that I've been hardpressed to find in my area. Just thought I'd put his infomation out there for anyone that is interested: http://santamariamedicine.com/sample-page/ He has two videos on his site as well. One describes him, his credentials, etc. The other focuses specifically on POTS/Dysautonomia. *I have not been to this Doctor, don't know if I will, but it is exciting to me to at least have knowledge of a doctor in my area (sort of) that even knows what POTS is Be well, Bebe P.S. He's not a "new" doctor. He's been in practice for years, only recently turning to Concierge.
  7. Joann, Yes, I've heard of Dr. Thompson and have heard many good things about him, although making appt.s can be hit or miss. Not sure if there is a huge wait time, but have heard that sometimes when an appt. is made it might have to be cancelled last minute due to his illness. Just found out about a dr. that is about 2 hours from me that treats POTS. I'm in the process of asking the forum peeps if I can post his website on here. He's a concierge dr., but looks promising. I'd rather travel 2 hours than have to travel 9 hours only to have the appt. possibly cancelled. Thanks for the suggestion Hope you are feeling better these days. Hugs, Bebe
  8. Thanks! If I lived that close to Dr. Grubb, I'd be there in a flash I think Well, after the year-long wait that is!! Of course I understand about insurance and whatnot though. Down here, there is nary a dr. that I have found that even remotely has any more knowledge about POTS/Dysautonomia than I do. We have a CC in the next county up, but I called or emailed, can't remember which, a few years ago to inquire about their knowledge of POTS. Brain fog keeps me from remembering the outcome, only to say they must not have impressed me, because I never did go. I might have heard of some negative experiences too along the way. I did just saw on FB about Doctor a few counties up from me (about 2 hours away) that is a concierge dr. (gotta look that up), anywho...he KNOWS WHAT POTS IS AND HE EVEN TREATS IT!!! Can you see my excitement??? I'm not going to run right out to him, but it is comforting to know that there is a possibility that there is a knowledgeable dr. out there and I don't have to travel to Ohio to see him. Be well, Bebe
  9. Great article, glad to see it out there and in the open, and kudos to her and her mother for being advocates! Only thing that I question is "POTS or Postural Orthostatic Tachycardia Syndrome was the end-stage of Dysautonomia." I've never heard this before, POTS being the "end-stage". Hmmm...
  10. My doctors, to the best of my knowledge haven't run any other blood work besides routine stuff. Two years ago when I began to see my current GP, he tested me for menopause and checked my thyroid, but that was it (aside from routine blood work) and all came back normal as far as I know. Never been checked for Lyme or had ANA done for autoimmune. It might sound stupid, but I don't think we have lyme down here, I live in South Florida and to my knowledge we don't have deer ticks. I've read that dog ticks don't carry lyme (unfortunately we've had issues in the past with this). I will ask my dr. anyway just to see. I am also going to ask him to do the ANA test for autoimmune as well. I know this sounds silly, but I really don't know if this came on gradual or quick. My whole story is on my blog (link below, not to give a plug, it's just kinda a long story). The short of it is, in 2009 I told the dr. that I had been experiencing heart/chest pain/discomfort and my left arm would feel funny and cold on the inside. He told me "You're too young for heart problems" and dismissed the whole thing. That summer I went to my GYN who told me that my bp was elevated, but not to worry, check it at CVS periodically and if it remains elevated to see the dr. Then, I began to notice that my heart rate would go up while doing non exhaustive things like making the bed (hr would go up to 120). All this time though, for the most part, I felt fine otherwise. In the fall of 2009, I decided to go to a new dr. They gave me an EKG and said it was fine but referred me to their cardio as my bp was elevated and my hr shouldn't be doing what it was doing. Saw the cardio, she said I had high blood pressure and high cholesterol and put me on Norvasc and Niacin. She also gave me a treadmill stress test that I passed with flying colors, didn't even break a sweat and hr went up to 170 while running. Still, I felt relatively fine. Began the medicine and a week later was driving somewhere and out of nowhere had a panic-type attack. Had to call EMT's, they said it was anxiety. Called the cardio to ask if the medication had caused this, she said she didn't think so. Next morning I was in the ER with same panic-type symptoms (original cardio that put me on meds for high bp didn't even bother to come). They did a bunch of tests, CT, US and all came back fine. ER dr. and EP dr. said that I did not have high bp or high cholesterol and told me to stop meds. EP prescribed a 21 day monitor that showed that my heart rhythm was fine it was just my hr that wasn't. Dr. told me it was unremarkable, but I might have SVT and scheduled me for a TTT. Tested positive on that and that's when he dx. me with "probably POTS" and referred me to a neuro. Went to the neuro, nothing resulted from that. Saw another EP for second opinion, he was a total you-know-what and told me to seek another dr. closer to home and look into seeing a psychologist. That's basically where it ended (as well as my life as I had know it) until I began seeing my current GP. Thing is, is that every dr. I've seen has just taken the first EP's dx. and gone with that. No one has ever tested me for anything else or tried to find out why or if there is an underlying cause. It has only been in the last two years that I've actively started to search and read bunches to try to figure out what is going on with me. I think I'm finally to the point where I just need answers and I'm going to try to get some. We'll see how it goes. Thanks for your reply Be well, Bebe
  11. Thanks MightyMouse, I have actually been reading articles on MCAS and highlighting all that pertain to me (also other articles as well). My hope is to do the same type of thing...go in an ask if this is something we could look into. We'll see how it goes. To my knowledge, I've never even had my epi or norepi checked (possible inicator of hyper POTS). I just want to move forward in finding out what exactly is wrong. At this point (and I truly mean this second in time, don't know how I'll feel tomorrow or next week) I truly believe there is something not right. I'm not looking for a magic pill or anything either. I just want someone to help me to sort all this stuff out. Maybe I truly don't have POTS and if I don't, then I want to find out what is wrong and go about seeking out a different/new treatment plan. I just want my life back. I refuse to sit back and accept that this is my life now (this might be denial talking). I have a NEED to find out what is wrong, and I think I'm at a point now to where I might be able to deal with the next step in this really poopy journey. Thanks again Be well, Bebe
  12. Thanks Looneymom, I don't even have a cardiologist presently. The first one I saw in 2009 (before being dx. with POTS) told me I had high bp (numbers ranging in the 135/high 90's area) and high cholesterol (numbers ranging about 212) which in fact aren't really high numbers to begin with. She put me on Norvasc 10mg. and Niacin (can't remember how many times a day) and a week later I was in the ER. The EP I saw in the ER said that I, in fact, did not have high bp or high cholesterol and to stop taking the meds since both had side effects of tachy and arrhymias (however you spell it). He is the one who put me on a 21 day monitor and did the TTT which I tested positive for. That's when he said, you "probably have POTS, drink more water, eat more salt and go live a normal life." He gave me a packet of info from this website about dysautonomia. That was the end of him, not on my part mind you, he told me that POTS was rare and that many doctors don't know about it and/or treat it and he wasn't one, and he couldn't even refer me to someone that could help me. I saw another EP later, in the next county up. He was supposedly a specialist in POTS. He did nothing but put me on Celexa which I had a terrible reaction to, he told me to stop taking it. I saw him some 4 months later for a follow up where he told me that all my symptoms had nothing to do with POTS (even though many of them came directly from the packet the original dx. dr. gave me). He ended the visit suggesting I find a dr. closer to home and look into seeing a psychologist. My pediatrician referred me to my current GP telling me that if I had cardio issues, he's the dr. I should see. I've been seeing him since. He seems to have a basic knowledge of POTS and told me that he treats about 5 other patients with POTS. He did refer me to a cardiologist, but I emailed him first to ask if he had knowledge of POTS and/or treated anyone with POTS and he told me, no, so he got scratched off the list. For the last two years I've been on my meds, but still just don't feel well. I haven't had the energy to pursue the whole thing again, but now I'm just sick and tired of being sick and tired and I am now at a point where I need to find answers. Hopefully, he will be receptive to my questions and concerns. Here's to hoping!! I hope you son is doing better these days Be well, Bebe
  13. Thanks everyone! Alex, I'll try to read through the articles. I've only read the one from Mayo, but my concern is that they found something on my kidney a few years back but chalked it up to nothing, although couldn't explain what it was either. The whole Florinef thing just goes to show you how much doctors know in my area about POTS...um...not much! That statement about Florinef being the only med for patients with POTS came from the EP that dx. me with "probably POTS" back in 2009. It was one of the doctors in my GP's office (not the one I normally see) that suggested I be put on a BB, and I've been on it since. I can't say I'm any worse for it, just not much better either. I want off this ride!! NOW!! MightyMouse, For some reason I can't search the forum using the search button up top. Don't know what the problem is.
  14. Abbyw, Sorry you can relate so well BarbaraC, Thanks for the response. I am going to try to keep going. My husband goes with me to all my appt.s, and even though he is so great, does so much for me and the kids, has taken over much of what I used to do, etc. his perspective is basically "everyone is going through something". This is certainly not to say that he is insensitive at all. I think he is just tired of seeing me struggle day after day and not being able to do anything about it. When I go to him with "maybe I have this", I get, "well, ask the dr. next time we're in". I don't have friends or family down here to help, just my hubby and two teenagers. I have friends, but they wouldn't be able to help as they have their own issues and families to deal with. Thanks for your suggestions
  15. Thanks Alex, I thankfully do not have that high of a bp, my highest has been 140's/100's and not sustained. My bp fluctuates all the time. Many times mine is in the normal range, but I still feel poopy and sometimes it can be higher or lower, but I still feel yucky. I was dx. by a cardio with high bp and put on Norvasc 10mg. even before I was dx. with POTS. Even then though, my bp at the time was not even to 140's, I think my highest was 135/something (which now I realize isn't high). I had only been on the medication for 1 week when I had my first "episode". When I went into the ER, both the admitting dr. and the EP that I saw said that I didn't have high bp and to stop the Norvasc. My husband still questions to this day if that med lowered my bp to the point of having tachy. I'll probably never know. Although before going to the original cardio (the one that dx with high bp) I was experiencing hr in the 120's without doing anything exhausting. I hope I'm making some sense. I'm just so confused and I want answers!!! (just ranting). I'm sick and tired of being sick and tired. Previous to all of this, I was a relatively normal, healthy wife and mother. BTW, after I tested positive during the TTT, the EP told me the only med for POTS was florinef, but he couldn't put me on that because my bp wasn't low enough (my bp actually increased) and if I took it then I would end up with high bp. I just wish someone could tell me what's going on and what to do about it so that I can get on with my life.
  16. Margibee, Like Joann says, they are rare. I don't know about the bp because mine tends to run high. I don't have pale skin though since I live in a tropical area, we are pretty tan here most of the time. Also, like Joann said, one might present like a pheo but in reality might have hyper POTS. My problem is that I don't know either, whether I have hyper POTS or pheo or what. Here is an article about pheo's from Mayo: http://www.mayoclinic.com/health/pheochromocytoma/DS00569 , if you've already read it then just disregard. As always if something is of concern to you, speak to your doctor about it. Be well, Bebe
  17. Joann, Thanks. Probably should've asked you first, becuase I know you've been going through this. I just started thinking after our last few talks and was reminded when I was going over some old test results that there was an issue with my kidney. They said it was nothing, but couldn't explain the spot on my kidney that they originally suspected might be a stone. I have suspected in the past too that I might have hyper POTS. I know lots of people, as well as you travel to CC or Vandy or other places, but that is just not in the cards for me right now or any time in the near future, especially with what is going on with dd right now. I guess all I can hope for is that my dr. is receptive to my inquiries. Thanks again
  18. Hoping everyone is having as symptom free day as possible. As many of you know I was diagnosed with "probably POTS" back in 2009. I've never been told what type of POTS I have and it's always been in the back of my mind that I might not have POTS at all. As a person that spends the majority of time at home (and lots of that time in bed on computer) I read and try to research what might be wrong with me (I should probably put that energy and effort into vacuuming ). As I'm reading, I'm noticing that I have many symptoms for other things, and I suspect that many go through this too as so many disorders overlap and such. What sticks out to me though is I have many more of the symptoms for other things and less of the main symptoms for POTS. Mostly, I feel like I have the flu, menopause, and a hangover simulaneously, daily. Symptoms I have on a daily/frequent basis are: tachycardia bradycardia spikes in bp headaches (sometimes migraine-type) tinnitus palpitations chest pain/discomfort bruise-like pain/discomfort in sternum, under left rib anxiety weight loss (over 4 year period) little appetite diahreah nausea sleep issues tremulousness waking with shaky feeling night sweats periods of cold/hot vision issues the ever popular brain fog That's most of them anyway. What I don't have is exercise intolerance (I'm just lazy in this area ), OI, don't faint, I don't have low bp upon standing, don't have blood pooling, and don't know if I have low blood volume (as no one has ever checked). What I've noticed is that with the symptoms above, and the reading I've done, it seems like I could have any number of things wrong (hyperthyroidism, pheo, MCAS, hyper POTS to name a few). Does anyone else go through this? I feel like, obviously something is wrong and no dr. has been able to pinpoint anything other than to say I "probably have POTS" after a positive TTT back in 2009. I guess my question is, do any of you go through this and how do you approach a dr. without looking/sounding like a hypocondriac or crazy? I always read that we have to be our own advocates and that's what I think I'm doing, but part of me thinks too, is it just me with too much time on my hands? I guess anyone could plug in numerous symptoms and come up with myriad possible disorders. I just don't know what to do anymore. I've been to dr. after dr. that have just basically concurred with the first dx. and went along with that. I've never been tested for anything else nor has any dr. ever suggested testing for anything else. It's taken me two years now to get back some semblance of respect and trust for dr.s (since I've had such negative experiences over the years) and I don't want to go in and suggest and ask for all these tests only to come away with nothing or worse yet, get referred again to a psychologist (been there, done that, did not help). I'm going to my GP next week. He's been treating me for POTS for the last two years with Metoprolol and Xanax. While I think I have improved ever so slightly, I don't know if that is due to medication, or that I'm just getting used to feeling this way, or what, and I still don't feel well at all. Everyday is a battle. I can't help but think that something else might be going on. I guess, I just can't accept that this is going to be my life from now on. If anyone has any suggestions or advice, I'd be grateful. Be well, Bebe P.S. sorry this is so long...
  19. I was just going over some literature I have and I'm going to see my GP next week and hopefully get some tests taken for various issues. I was reading about pheo tumors and I pretty much have all the symptoms except the sweating part, although I do experience night sweats and go through periods of being cold one minute and sweaty the next. Anyway, I have a question: Has anyone been suspected of having kidney stones and it turned out to be a pheo? This is why I ask. A few years ago when I first started seeing my GP (the only dr. I've found that knows what POTS is and attempts to treat it), we were going over my history and he requested an X-ray, if I remember correctly of my bladder, because of a history of bladder cancer with my dad. They found something on one of my kidneys and suspected kidney stones. He then sent me for an US of my bladder and kidneys and they reported that the test was unremarkable. That's where it ended. I'm going to ask that my GP about this and ask if he'll test me. I was just wondering if any of you have gone through this before. Thanks in advance Be well, Bebe
  20. Thanks Hope! Sorry, I just saw this now as I was going through my old posts because I'm finally going to go in to see my GP. I find it interesting that bloodwork can reveal "old viruses lingering". I know that my daughter had EBV and bloodwork could reveal if it was active or not. I'm definately going to bring this up to the dr. I had MRSA back in 2000 and it took a few years to get rid of it. The dermatologist that I was seeing said that if the med cocktail she was giving me didn't work, she'd have to contact the CDC and have me get a PICC line for IV antibiotics. For the most part it went away, although I really can't remember if I was ever retested for it. I've had a few skin lesions over the last few years and it's always been in the back of my mind that I could still have issues with this. As far as my ears ringing...it is most annoying! It is constant, every minute of every day, worse in the morning and in the evening. I think I've already said that I have to use subtitles now or there is no use watching tv (unless I turn it up so loud the neighbors could hear!). I don't think I have a balance problem, although I've never tried to walk a straight line with my eyes closed. Maybe my dr. will send me for a hearing test. I can't be on a high salt diet because my bp tends to raise at times (salt loading never really seemed to benefit me in terms of POTS). I do drink a gatorade now and again though. I'm going to ask if it might be my medication as well. Who knows?? I just want the ringing to stop. I think too that I grit my teeth because of the ringing (or maybe just all the stress from being ill) which of course causes me to have headaches, or at least, I'm sure contributes to them. Anywho, thanks for the info!! Be well, Bebe
  21. When your husband writes "I know you've been feeling run down and crappy the last several days, probably borrowed against your spoon supply while on vacation." in his daily, morning email message.
  22. Firstly Snowdrifter, sorry you are going through this. I have something similar that wakes about 5 days out of 7, although when I take my pulse, all seems fine. I wake usually from a very vivid dream state and it feels like I'm trembling on the inside. I absolutely hate it and it scares me, and unfortunately I'm kinda used to it now. Doesn't happen all the time.Don't know if it is an adrenaline rush or what. So confusing. I'm going to bring it up to my dr. but I don't think he'll have much to say about it. Let us know if you find anything out. I know that there have been others on here that experience this type of thing. Be well, Bebe
  23. Well, I guess I'm in a "flare" then. Usually I feel pretty poopy most days, but today I've felt worse than usual, same symptoms just more pronounced I guess. Vitals have been fine as far as I know. I'm pretty stressed out at the moment, so I know that that is fueling the fire. I just always see people writing about "flares" and wanted a bit of a clarification. Thankfully, mine don't last too long. Thanks to all of you for your responses. Be well, tomorrow is a new day Bebe
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