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Everything posted by mom4cem

  1. Deepest Sympathy Miriam. I know I don't know the whole story, but regardless on how anyone felt, you should have been told sooner. I hope you can find some peace and somehow closure and please don't take any of this out on yourself, can't beat yourself up for something you had no control over. Be kind to yourself during this time also and my thoughts and prayers are with you.
  2. Have the same thing here, thinking of what I want to say and what comes out are two different things. I can be holding a conversation, I look at something around and the next word that comes out is part of what I wanted to say and part of what I was looking at, make any sense, probably not and it's probably happening again..lol. Somedays the fog is so heavy in the head I don't even feel like I am speaking, it does worry me at times, then there are days when it is really clear.
  3. Hi Blackbird, So sorry you are feeling so poorly. This might not help at all, but I remember when I was working in an OB/GYN office, we had many patients who spilled out a lot of protien in their urine. I even had that for a while, dr. told me that in my case, I have a pretty high metabolism, and I go through periods where I am naseaus, can't get anything down, so my body starts to break down muscle etc, to keep going and it spills out into the urine. When I had bad naseau, the gi dr. gave me reglan, I am a bad person when it comes to taking meds, but I know many people who took it and it helped. It is frustrating, depressing and darn tiring to keep the search up to find someone who is willing, knowledgable to take on all we go through. I have not found anyone who believes in all the symptoms/syndrome that goes with us. So I go to a dr. here, one there, and hope the combo will help. Half of my mangement comes from me, getting info from others like you all who are going through this too. I know this has not helped much, but I hope you can get this under control soon and feel better
  4. Interesting thread. I have taken corgard in the past, worked o.k. Also took bisopropal(can't recall the brand...brainfog) and now taking 12.5 of tenormin..take a full dose and I feel like I have bricks for legs and am so fatigued. It seems to work some days and keeps the heart rate low and other days even 25mg can't control the rate well. Still searching.
  5. Hi Morgan, I don't know how much more I could say than the others on here did already. I'm new here so forgive me for not knowing much about what is going on. I ditto what everyone else has said to you. You sound like a very caring, loving and giving person,mom and friend. Remember to give some of that back to yourself! My heart and prayers go out to you, your son, hubby and friend. Sending you positive thoughts,,and PLEASE take care of yourself during this time, we know how the backlash of stress;etc, takes its toll. ((((hugs)))
  6. Wow, most of what you all describe is how I feel also. Teeth chatter, shakes, frequent bathroom runs, tachy etc, sometimes the teeth chatter and shakes are by themselves. It really wipes me out and lately they have been pretty frequent. The older I get, the longer it seems to be taking me to bounce back. Hyperadrenergic is what my dr. said I was also. The adrenaline rushes sometimes hit me a little spurts and are over quick when it hits my heart, sometimes it seems to effect my stomach and I get anxious flip-flops in the pit of my stomach, but the worst is when the someone opens the dam and the adrenaline just pours out, the tachy, the jelly knees,my head feels like it will explode, I swear I am going to bite my cheeks apart from my teeth chattering so much
  7. Thanks Nina, I really don't know if how well versed he is in dysautonomia. When I go back to the MVP center, that is where I originally had my tilt test done, I am going to go with my list of questions and hopefully come out with some answers. At least I know the Dr's there are very well up to date on dysautonomia.
  8. Thanks to you all who replied, you have really made me feel welcome. Gena, I had blunted results also, did not and still don't really understand what that meant. Dr. Sawyer was my Dr. all these years also, I was sad when she retired. I will be seeing Dr. Watkins the next time I go down. Thanks for the link Tammy, and to Ernie, LindaJoy and dizzy (and if I missed anyone else) thanks for the replies again!!
  9. Hi all, A little about myself, I'm a 38yr old mom of 3, work p/t in the school. Have been diagnosed with MVP/MVPS, dysautonomia and fibromyalgia since 1990. Though back then and even today, not many dr's that I've come across know or want to know about these conditions. I've had low b/p, gray out at times when standing or getting up from bending over or kneeling,especially worse in warm/hot weather., and that is as far back as being a kid! Pac's and pvcs and tachycardia off and on for years along with panic/anxiety, IBS, from a non-sweater to a sweater, twitches, shaky hands and sometimes legs, wired but tired, tingling and a whole host of other symptoms that overlap so many different things I don't even know what I have at times..lol. Recently going through a bout of tachycardia off and on. Comes on gradually, feel dread in my stomach and my heart starts to beat fast, the more I notice it, the faster it gets it has been as high as the 140's to 150's but lately in the 120's or low 100's. Sometimes I can ride it out and even abort it from become full blown and other times it hits and stays for hours. I have chills and I mean teeth chattering chills off and on, low temp,GERD,aches and pains everywhere, at times inappropriate heart rate for the activity, waking up and going to the bathroom can zoom the ole rate up quite a bit. Notice every single sensation that goes on in the body and the list goes on. I was tested, tilt table, down at the MVP center in Ala, back in 90 and at that time it came up blunted, whatever that means,, but Dr. said I had, at that time, a mild form. Seems I go through different symptoms that last for months then something else comes up. Lately it seems to have reared its ugly head big time. Been under a cardio's care since 90, have reg. echo/stress tests, blood etc. Using an even monitor and all it is showing is sinus tachy. Dr. says I don't really fit the exact criteria for dysautonomia now, since he does not think my case is that severe,(if he was me and feeling this, I think he might think differently). Line of treatment is to keep taking my beta blocker to keep rate down(even taking the bb my pulse is usually in the 80s, which during an episode of tachy goes up, aciphex for gerd and wants me to try paxil very low dose, which I am quite frankly, nervous about taking. I have not started that yet. I'm digusted because I don't have control over any of this, have really been trying hard not to let on to the kids that anything is different than usual but it's getting tough. I'm tired, cranky but not yet ready to throw in the towel. This has got to pass!! I live in the NorthEast but I am planning to go back and visit my MVPS dr in Ala and hopefully get re-evaluated for dysautonomia and get some answers. I hope I can be of some support to others, and anyone who can send some warm weather to the Big Apple, please do!! Thanks and looking forward to chatting with you all
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