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Everything posted by bebe127

  1. Since being dx'd, I've noticed that I too burp a lot. Don't know what it is all about. Usually, I tend to burp when I'm feeling poorly.
  2. Edin, Sorry to hear that you are going through this. I too bruise easily, unfortunately I do not know why. I always say, "I bruise like a banana." Mostly I notice them on my legs and occasionally on my arms. Sometimes I'll even have a sore spot and a few days later a bruise pops up. I don't know why it happens or even when in my case. Much like you, I just assume I bumped into something and just can't remember. My husband can squeeze my leg (in love) and next thing you know, a few days later, I have five little bruises pop up. I am forever telling him, "Be careful, I don't want to have a bruise!!" I wish I knew why. My mother always bruised easily as well. Dr.s have never really had an answer, nor ever really seemed to wonder why. I guess too, I always figured it might be some kind of vitamin deficiency, but have never figured it out. Hope you can figure it out, and if you do, please pass it on...the info, not the bruises Be well, Bebe P.S. Never been tested for EDS, but I'm not stretchy, so never really saw the need. I am pretty flexible though even for someone that doesn't exercise regularly.
  3. Unfortunately I've never heard of one Some on here say that they have improved a bunch either by life style changes or meds or both. Personally, I'm pretty much in the same state I was in back in 2009 when I was dx. It has totally changed my life for the worse in some areas, but I also must add that I have encountered many positive changes in my life as well along the way. Everyone is different and reacts and responds differently to various treatments. Chin up though...there is always HOPE
  4. 1Kate1, I know you just want positive feedback. I have been on Metoprolol for 2+ years, no side effects that I know of I am on 75mg. per day (25mg 3x). I still have ups and downs and I still get "flare ups" but nothing like I did prior to taking it. I am also on .5mg of Xanax 3x a day and I really think that that does the most good for me. You must keep in mind that everyone reacts differently to various drugs. I have never been on anything else. Hope this helps. Good luck with your meds. Blessings, Bebe
  5. Before TheMorning, I'm sorry you are having to deal with this. I have had tinnitus my whole life it seems. Mine has gotten worse over the years, especially after my POTS dx. It seems as though mine gets going in the afternoon too and really bad at night. I either watch my NOOK or listen to music to go to sleep. It is quite annoying. I've also noticed somewhat of a hearing loss as now I have to resort to lip reading (which can be quite awkward depending on with whom I'm speaking!) and I have to put CC on the TV lest my poor family has to repeat everything everyone says. So sorry, I have no answers. I've asked dr.s about it and they look at me like I just grew another eye! I'm considering going to my hub's ENT to see if he can figure it out. At least maybe give me hearing tests and such. I've read that sometimes it has to do with blood pressure. Hope you get some relief and if you do, please keep us posted! Best wishes, Bebe
  6. Alison, Glad you found this forum. It has been my saving grace over these last few years. I'm so sorry to hear that you are going through this and hope that some alternative can be found so that you can get a diagnosis and treatment sooner rather than later. You will find lots of useful information as well as some of the most compassionate and caring encouragers I've come across on this forum Just wanted to let you know that you are not alone. Your symptoms sound quite similar to mine. You will find many others on here that are in the same boat (unfortunate, but good at the same time). Wishing you the best! Bebe
  7. Welcome Krys, I hope you find, as I did, that is forum has a wealth of information and so much support. I don't know what I'd do without this group of wonderful people I have had POTS now for 5 years. Your story sounds quite familiar (although I had what seemed like sudden onset, but could have had it most of my life). I am glad to see that your PCP is willing to help. I hope you can find a dr. in your area that specializes though. My PCP treats me as well as he can as I haven't yet found a dr. in my area. Try not to get discouraged about the whole anxiety route, many dr.s it seems go this way when they have little to no knowledge of the syndrome. I've been told many times that mine is anxiety. Thing is...your Autonomic Nervous System is what controls anxiety, so it would only be logical to assume that anxiety is from the wacked out ANS and not in your head. Here is what I consider to be a great article about this. It is written by a former Neuropsychologist turned Dysautonomia Patient: http://www.dysautonomiasos.com/#!psychology-and-dysautonomia/c20ox Here is her blog as well: http://bobisdysautonomia.blogspot.com/ She has lots of info, encouragement and humor in her writing. Best wishes to you!! Bebe
  8. Hanice, Thank you so much!! Glad to hear you are doing so much better As you know, I'm on a hiatus from my illness, ha, ha!! In the words of Dr. Phil..."How's that workin' for ya'?" Well, it's working some days and not so much others LOL!! Interesting about the fats. A few years ago, in the spring of 2009 (I began to feel odd shortly after) I was on the "Six Week Body Make-Over Plan". I cut out sugar, salt, and went low fat and basically ate fairly healthy and exercised, riding my bike 9 miles a day. I wanted to lose a few pounds and just be "in-shape", I wasn't overweight or anything, just wanted to become "healthier". Then, in the fall of 2009, I was dx. with POTS. Before all this, I would skip breakfast, have a late lunch and eat dinner. I figured that this "diet" would be a good way to boost my metabolism and "get healthy". Now, after reading your post, and others' I'm starting to wonder, although my blood work has usually come back fine. Just makes me think... Oh, and I also had a friend that wanted to try the plan and didn't last one day. She had to call her husband to pick her up from where ever she was because she was feeling all weird. Looking back on it now, she was feeling really rather "postsy". She almost kicked me when she saw me next as she related her horrid experience. Hmmmm..... Now, I feel so ill all the time that I usually have a nutribullet shake (that I will now be adding coconut oil to) each morning, usually skip lunch, just cuz I'm feeling ill and not hungry and have a decent meal for dinner, thanks to my Big Handsome that cooks I don't even exercise anymore because it leaves me so sore. Anyhoo, I will seriously consider calling the dr. after talking it over with the hubs. Thanks again, Bebe
  9. Hanice, I'm interested in this dr. Could you pm me please? I know that we live around the same area, but all I can find on this dr. is that he is in NJ? Sounds quite intriguing. Thanks, Bebe
  10. In no particular order: http://bobisdysautonomia.blogspot.com/ http://justmildlymedicated.com/ http://lethargicsmiles.wordpress.com/whats-pots/pots-101/ http://letsfeelbetter.com/ I have a blog as well, but mine is like an online personal diary and I've been on a sort of hiatus for awhile (it's listed below). I've just been busy with the family and kids and school and blah, blah, blah. Hasn't left me much time for writing.
  11. I'm so sorry you are having to deal with this. I've been married for almost 22 years. This is where we might differ...When we married, I always liked to say "we've left and cleft", that means that we are now a family, my husband and I and our children of course. There have been times in the past when my in-laws have driven me mad with all the "gee you don't look sick" and "oh, you went on vacation, you must be feeling better" and on and on. There was a case where I was at my wits end because they like to spring visits on us, like emailing me on a Thurs. evening to say they are coming for the weekend which sends me into a complete tailspin as my kids have homeschooling Enrichment on Fridays and that leaves me no time to clean and prepare the home for visitors. That all being quite confusingly said, my husband noticed how it affected me and has since told his parents that if they are intending to come for a visit, they must allow us at least a week in advance so that we can all prepare for their arrival, physically, mentally and emotionally. Also, he asked them to email and/or contact him because the littlest stress can send me into a downward spiral. He looks out for me and our best interests first. I agree with the above statements, your boyfriend should be sticking up for you. You might even consider telling her exactly what you said in your original post by articulating, "I feel ________when you suggest that I can just take a pill and be cured." Possibly send her a link to "The Spoon Theory" for her to read. I know it is hard dealing with in-laws and I can honestly say that I love mine to death, but I have to keep in mind that all of us are different and have different personalities, perspectives and such. Wishing you all the best. Bebe P.S. I'm proud of you for going to the grocery! That is a feat in and of itself
  12. Kayjay, Yes, I'm looking into encasing everything except Big Handsome (aka: Hubby)!!!
  13. Hubs just got back from ENT appt. Dr. asked how old our mattress was (since my husband had a reaction to dust mites). Husband responded, "Funny you should ask. My wife and I just figured out that my symptoms began about a week and a half after purchasing a new mattress". The dr. said that they preserve new mattresses in formaldehyde and that might be why my husband had a reaction. Hubs has gotten progressively better, albeit slowly. The dr. said to give it one more month as he didn't want to start shots or meds if this is something that will fade with time. I'm just so glad that it appears to be a reaction to the chemicals and that it will go away with time. Thinking back now, I think I've read or seen somewhere that when you buy a new mattress to let it air dry out in the open for a period of time before using it. Wish I would've thought about it then...
  14. Thank you Bellgirl Blessings to you!!
  15. Looks like mattress covers all around and more frequent dusting and vacuuming all around...insert sarcasm here! I think he'll be better off with pills or shots
  16. I cringe as I type this, but we did get it from a discount mattress place locally. My husband did some research before making the decision to go to them. I think it's a Beautyrest and it was bagged with the original tags and all.
  17. Hey there Bellgirl, Hubs did go in for allergy testing. When he told me the dr. suggested inhalant allergy testing, I guess we both got the impression that he would be smelling various things. Well....not so! Poor thing came home the other day with a total of 54 needle marks split between both upper arms and another 40 some pricks split between his inner forearms. He looked like he'd been used for a pin cushion!! Anyhoo, thankfully he's not allergic to any food stuffs. He is allergic to the normal dust mites, roach droppings, some grasses and oak pollen (doesn't really bode well for him as we live in a hot/humid tropical area). He goes back in to the dr. in a few weeks to go over the results. They said something about shots and pills. Who knows. I'm trying to research about doing what I can as far as the dust mites and bed coverings and whatnot. I was talking to a friend the other day that has the same problem and while I was talking to her, I realized that we had just recently bought a new mattress for our bed and it so happens it was around the same time when all this started. He's going to bring that up to the dr. when he goes back in. We wonder if there is some chemical or something that is irritating him. We shall see. I'm also going to have him ask the dr. about the positional thing and those exercises. Thanks for the info!! Be well, Bebe
  18. MK girl, I'm sorry you are having to deal with this. Please try not to feel sad, I know it's easier said than done. I hope you can find a doctor that can truly diagnose you and treat you. There are many on here that have gotten better over time. That is certainly not to say that there will be periods of sadness, fear and anxiety. I know for me, my anxiety (which I never really had before being dx) hit the roof when I was first dx. In fact, the EMT's said it was in fact anxiety. It was only after a hospital stay (my one and only) that I met an Electrophysiologist that then put me on a 21 day heart monitor and set up a TTT. I tested positive. I still deal with anxiety occasionally, but much less now. My daughter on the other hand (17) was just diagnosed by her cardiologist (she has congenital heart defects) with dysautonomia without having a TTT done. The dr. dx. with my daughter's explanation of how she was feeling as well as them taking her vitals lying and standing. I didn't even tell the dr. I had POTS until after she mentioned that my daughter had it. My daughter is on no medication. She does well if she makes sure to stay hydrated and gets plenty of rest. Try to keep your chin up Like I said, there are many on here that have progressively gotten better. You will begin to notice "triggers" and begin to listen to you body to know what you can and can't do. I had to find a "new normal". Not that I liked it, but it had to be done so I could go on living my life to the best of my ability. And yeah, it pretty much stinks, but we can do our best to do what we can when we can. I still have bad days and good days and I try to appreciate all of the good days that much more. Best wishes to you! Be well, Bebe
  19. When you're lying in bed with insomnia and you suddenly begin to smell the coffee start brewing for the next morning...
  20. Thanks Bellgirl, Husband is still suffering some days worse than others, but he's a trooper and hasn't missed any more work even though he had to get some paperwork filled out in case he needs to miss. Dr. now thinks it might be positional, although positional testing was negative ??? Hubs goes in tomorrow for inhalant allergen testing. Who knows??? I guess that's why "they" call it "practicing medicine" Good note...bad note...he can now relate to me and the feeling when something is wrong and nary a dr. can figure it out Thanks for the well wishes.
  21. I have to say that I agree with "ask" on this one. I, myself am looking into a holistic dr. that is an MD. I've heard she spends tons of time during the first appt. to get a complete history (something I've found to be a rarity with the western dr.s, they seem to just concur with the original dx. and go no further. Maybe they don't want to step on toes??) then decides on what tests. True that many don't accept insurance, but from what I've hear and read, many of the tests are covered by insurance, so that helps. Best of luck to you in finding a dr. that will listen and attempt to put the pieces of the puzzle together for you so that you may have some semblance of normalcy
  22. Northerndarlene, I am so sorry you are dealing with this. I know it is completely frustrating. Your experience sounds a lot like many of mine, and unfortunately quite similar to many others' I would hazard to guess. Know that you are not alone. Keep pushing and trying to find someone to help you. I know this is easier said than done. I'm currently at a crossroads myself after being untreated for two years then getting semi-treatment for the last 2+ years. I am just now beginning to attempt to get back on the horse and begin searching yet again for someone to help me. I know it is so exhausting. It is bad enough to be taxed physically on a daily basis, but to then continue to get knocked down emotionally and mentally is tiring to say the least. I wish you all the luck in finding answers. Try not to give up!! Keep on searching. My sincerest hope is that you find answers and treatment soon
  23. Thanks for the suggestions. I know this might sound really lazy and silly, but are there people out there I could hire to "clean" my pantries and get me some recipes and such or a nutritionist that could help me to transfer over?
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