mom4cem

The symptoms have nothing to do with the billowing of the valve but from the dysautonomia that seems to accompany it. There are people who have MVP but no symptoms and others do not have MVP but have symptoms and then there are those in between. I have borderline MVP on echo and my dr. can hear the click and a little murmur and I am considered having it but I have most all of the symptoms of the dysautonomia that seems to go along with it. The prolapse is like a marker of some sorts. Many who have it have the symptoms of dysautonomia also. So I would say you can have the syndrome which is dysautonomia without showing the prolapse. Sometimes it does not show depending upon how hydrated a person is or if they are on beta blockers etc. That is what I have been told by my cardio. Most of the self help as well as meds for MVPS are the same or similiar to POTS like fluids, beta blockers etc.

I would venture a guess also that it is because of the Dr's. Living in NY I would think we would have dr's upon drs treating and understanding dysautonomia,,be darned if I could find one who is like that. I went to Alabama to get diagnosed. A little far for me to travel often too but I do go when I can so at least I have someone who understands and really tries to help get the symptoms under control.

Welcome Rachel, I live in NY. I also have different symptoms going on at different times. I was diagnosed with dysautonomia at the MVP/Autonomic Center in Ala. years ago. Getting help here is another story. Go through good times, go through bad times. Since last Nov. the bad times have hit and still are going strong. Hang in there and welcome once again.

Hi dizzy, That must have been scary with that med. That is a big reason why I don't want to try anything new. That heartrate was scary also. Did you speak to your cardio when it happened? 240 is high. Did you feel like a early beat and then your heart took off? That would have sent me to the e.r. I can't take the tachycardia. When mine has hit 150 I really wigged out. Hope you are feeling better now. Please let us know what your Dr. says.

That is great news. I will keep you both in my thoughts and prayers. Boy, don't they grow out of shoes fast!

Hi, It is hard not to feel guilty that we may not be giving 100% to our partner, family etc. You have to think that 100% for you may not be what another person can give as 100%. I am sure you are still a loving wife with much to offer and give even if it's not scuba diving, hiking, bungee jumping..lol. Point is, I also feel guilty that I am no longer what my hubby signed up for, but in all the years together he has stuck by me and says I may have some extra baggage but he is in it for the long haul. I also feel my kids get short changed, I have to drag them to the dr.s when I am going through rough spots, can't get to their games go on the trips that they want, but I try to think that the most important thing is to be there emotionally and love them all that you can. I really try to not let my condition be theirs. Hang in there and celebrate the years together and for 60+ more. Here is to hoping one day we all wake up feeling better than ever!

Hi, I agree with most everyone's posts. You do what you feel is right for you and your family. You know your limits. If you send him to school, maybe there is a way to work it out with another parent to carpool. Possibly, if you can afford to, pay someone you know to pick him up. He would be with other kids his age and in a learning environment. If you can't and he stays home, he'll still be ready when kindergarten comes. He'll enjoy being with you and when you're up to it, do some homeschooling, letters, alphabet etc. Just a thought. Really what ever you need to do you do it.

Welcome Marie, Glad you decided to join. How nice you have such a compassionate dr. who will do whatever it takes to help you. Hang on tight to him! Glad to hear you are on the right track with other drs in your care. Welcome again.

I am glad that the report for the nodes was clean. I wish you a quick recovery and hoping that any additional treatment will be quick and gentle. P.S., Wearing my pink braclet for the cause...

I am trying paxil cr 12.5. I am nervous about any possible side effects. That is a hard call about either continuing the meds or quitting it. I took Zoloft 25mg once years ago and I felt jittery etc, I figured it was from that and never took it again. But, I was expecting side effects just like now, so who knows. I hope the zoloft works for you but if in a few days you can't take it anymore call up and see if you can try another ssri. How long did you try the Lexapro before you quite it?

I have the Mio watch heartrate monitor and a b/p monitor. I find the mio great to check when I think I feel my rate starting to go up then I can keep track and the b/p monitor for when I feel the heaviness in my chest I check if my b/p is up with it. I feel I can better help myself and give my dr. hopefully useful info on my condition.

Hugs and prayers to you and your family during this time. Thinking of you. Keep strong.

Welcome! Glad you are getting treatment. Please keep us updated.

Welcome and I am sure you will find much support here.

Welcome! You will find a very helpful and supportive forum here.

I've not been around much so please excuse how late I am in replying. I will be keeping you in my thoughts during this time. I know others who have gone through this and are fine. Keep strong and I hope you have a strong family to support you during this time! ((hugs))

I remember those days well. My first son never like to sleep during the day, some catnaps here and there for about 20 minutes, thought I would never have another one. The second,daughter, was 22 months later, she was better but boy oh boy, two in diapers, two with bottles, twice as nice and twice the mess and sleep, grabbed it wherever and whenever I could. Now, when you go for 3..lol.. My third is 4 years apart from my daughter. He is a boy. I rather enjoyed the break in between and the other two were quite big helpers when he was small. He is literally sucking the life out of me, but would not trade him in for the world. Not much advi ce here except grab the sleep when you can and anyone who is willing to watch the baby for you, take them up on it, even if it is for some quite time for you. Oh yeah, I hate to admit this but I would put the baby in the vibrating little seat they had, strap in, and it usually soothed them to sleep and I caught a catnap too. When you need to sleep, you do almost anything to get them to sleep.

Hope you are feeling better soon. Nice, soft hug for you.

(((hugs)) to you Sunfish. I hope you find a knowledgable and compassionate Dr. soon, and make sure you drag that boyfriend of yours along so he can hear all about pots and it's potentially debilitating symptoms. I thank goodness that my hubby is very understanding and compassionate even though he does not have dysautonomia. My symptoms jump around so much and at times keep me from doing things, but he never pushes me, he is always there, the first one to say o.k., you stay home and rest. I love my family but I can tell they think much of this is me over-reacting, so I wind up not talking about it with them. I just say I am under the weather. It takes to much energy trying to explain and you just convince some people otherwise. Hang in there!

(((((poohbear))) Hope you are on the fast track to recovery. Hang in there.

I'm a little late on jumping in on the post, but glad to hear the appt. went well. It's nice to find someone who does not "poo poo" how you feel, what you say or that you have any knowledge of what is going on etc. I hope only positive things come out of this visit for you! Hang in there with the family too

Like the thread. I also feel I may need to change my username. No creativity here! Mom because, a duh, I am one and 4, me being clever used the number rather than just writing for, and the cem is the first initial for each of my three childrens name. Woo hoo, orginality is not in my name!

(((hugs)) to you. Hang in there. The depression from either being sick and the loss and rememberance of a loved one is enough to keep us down, never mind both. Keep the support going with the family, don't keep them out of the loop and remember all the friends and support you have here. Hang in there, you will get through.

Glad you had a great time. It is very inspirational for the rest of us!! Welcome back You are one tough cookie!

Hi Dizzy, I have a 50mg of tenormin but I break it apart and take what I need. Lately it has been 12.5 2x a day, sometimes I throw another one in there but this way I try to find the most effective dose. I tried 50 mg and boy was I dragging myself around. Hopefully this might be an option for you.