sandy

Thanks for the responses. So glad you would like to participate in meeting. I am setting up the meeting to meet in Manhattan. Would love to have you join us. Is April 7th at 1:00Pm ok?? I am waiting to hear back from a few others and I will keep everyone updated.

Hi everyone.. I am trying to set a support group to meet on April 7th at 1:00PM in a Starbucks in Queens NY. I also posted on MVPS's forum and I will post on NDRF. For anyone who would like to participate please post or email me at Sparknik2@hotmail.com.. Would love to have as many as possible join in..

Hi everyone, I just finished reading the post that refered to problems with using LA and am not sure what I need to ask for. I have to have a root scaling done which is an invasive procedure and need to have an LA. I told my dentist that I can not have Novacaine and she told me she would use Carbacaine.. Has anyone haad an issue with that LA before. I am very sensitive to anything that enters my body but I know I need some kind of LA during this procedure.. I am a dental chicken to begin with and this is just making matters worse for me.

I can totally relate to getting PAC's after eating. Even if I eat a small meal i will experience PAC's. And i seem to suffer alot with PAC's with bigeminy. It's a continuous feeling of palps one right after another.. And it's funny no matter what I do they do not go away. They are very uncomfortable

Hi Tearose and mom4cem, So far there are 5 of us who are interested in meeting. I am just waiting to hear back from one of the girls about her availability. I work full time but am off Sat, Sun, Mon... What are your schedules and times you would be free to meet?? We need to meet at a Starbucks that is convenient for all of us to get to. Feel free to email me with your info on what is convenient for you and where you would be able to meet. Someone suggested Queens, which works for me..I live in Nassau and I know others live more towards the city. I'm really hoping that this will work out for us...

Hi everyone.. I am trying to get people with any form of dysautonomia to meet in person in the NY area. I posted on a few sites, and if everyone is in agreement we will probably meet at a Starbucks that is at a convenient location for all. Please post if you are interesated in being apart of it. Any information or suggestions would be appreciated

I seem to deal with chills and goose bumped skin all the time, morning, noon and night. The only time I seem to warm up a bit is when I am layng down under the blankets, but as soon as I get up in the morning I get so cold and my hands and feet become ice. It is such and uncomfortable feeling

I take 1000mcg's of B12 everyday plus a B complex vitamin. It is known to support the nervous system. I have had many blood tests thast always come back normal so I take it upon myself to add extra vitamins in my diet..

Congratulations and best wishes for a bright healthy future ahead. You are an inspiration. Good Luck and Be Well

Oh Boy. Tell me about always feeling cold. I can never get warm. MY hands and feet become white and numb from lack of circulation. Our ANS controls all autonomic functions including internal temperature. So we having an imbalance throws our body temperature all off. I am from NY and today is blustery cold which is leaving me frozen to the core of my body.

So sorry to hear that you missed your appointment.It is not easy for us to have test performed cause we suffer with daily symptoms and we never know when our symptoms will be just too much for us to even get out of bed let alone go for testing. I really hope you are feeling better and are able to get another appointment soon....

I exercise at least 4 times a week. I really feel it has helped me a great deal. I was told that exercise would improve fatigue, heart rate, blood pressure, and overall well being. I sometimes slack off and feel really guilty when I do so i make evry effort I can to make exercise a part of my life. I must admit it sometimes knocks me out and leaves me feeling exausted but I don't stop working at it.

Oh my goodness I can't believe what i am reading. I thought that I was the only one with this problem of memory loss. What struck me the most is not being able to find the words as I am in a conversation with someone. I actually forget everyday common words and look like an idiot in front of people. I was told that beta blockers can cause memory loss. Whether that is true or not I don't know. I have been on a beta blocker for 15 yrs now and i don't plan to go off of them anytime soon. But i have a hard time remembering things and I could never figure out what the problem is. Wow I can't believe I am not alone with this.

I totally relate to being cold and getting chills. I suffer really badly with that symptom. I am forever frezzing cold and my toes actually become white and numb from lack of blood. The ANS controls everything in our bodies so we can not regulate temperature well. I know with me no matter what i do I can not get warm for nothing unless of course it is very hot out then I feel faint and experience panic attacks. My body seems to over react to every stimuli I am in contact with.

Hi everyone... I would like to get a support group started for NY and was wondering if others would be interested in it.. This board has been a great deal of help and I think it would be so beneficial if we could meet in person and share our stories. I also posted on the MVPS/ dysautonomia board for comments or suggestions on starting a support group in NY.. Let me know what you think

Years ago when I first started taking Toprol I could not even get up out of bed without being completely breathless. I could not carry a conversation at all. It was like I was suffocating. Went to several doctors and no one knew why I was suffering so bad. Then I had a doctor tell me that with dysautonomia it could be my diaphram is not relaxing so I am not able to take a full deep breath. He said it's all related to the dysfuntion of the ANS. Still to this day I struggle on and off with breathlessness, but it is tolerable at this point

I too go through periods of feeling well, but not too long goes by before the symptoms make their way back in. But I do make the best of when I am well. I do work full time and I often push myself to be active. I did go through a rough spell five years ago that left me praticallt bed ridden for 4 months. I went to every possible doctor known to man. The end result was I had to make a trip to Dr Grubb to at least understand what my body was doing. Keep strong and Be Well

Oh yes, I deal with anxiety all the time. Even as a child I remember always having butterflies in the pit of my stomach. Always getting that fearful feeling, even knowing that was nothing to fear. It's all part of the imbalance of the autonomic nervous system. I've tried all the methods of deep breathing and meditation which really never helped me. I learned to accept it and deal with it as best I can

I always have problems with my breathing. Their was a period years ago that i couldn;t even speak cause I had no air in my lungs. Had all kinds of test done and nothing was ever found. But I can tell you that it was a horrible experience. From time to time I still get that feeling of total breathlessness. Don't know what to attribute it to. I just know that it's all apart of dysautonomia.

I totally understand how frustrating it is to try everything you can think of to feel better but nothing seems to work. When I was at my worst it did not matter what I did to help myself, I was just plain sick. My body was doing things that did not make sense to me and was not under my control. After four months of suffering it started to get better. It was a gradual process but I am better now than I was five yrs ago. I do deal with symptoms on a daily basis but I am able to function with them. I appreciate every second that I feel well but there is always that worry when the next symptom is going to pop up.

I can totally relate. I suffered tremendously with supine tach and palps and so many other symptoms. I could not function whatsoever. That lasted really bad for 4 months and then some of the symptoms started to subside where I was able to go back to work(only part time though). But I still deal with all sorts of symptoms on a daily basis just not as debillitating. Dr Grubb told me that I suffer with hyperadrengic POTS. My body is always in the fight or flight response. Over stimulated sympathetic part of my nervous system. So I don't just get tachy while standing. I am tachy all the time with palps and constant adrenaline flow. U may be dealing with the same thing.

I must comment on taking Tylenol PM. Please be careful with taking that. I took Tylenol Pm to help me sleep years ago and got hit so bad in the middle of the night I swear I thought my life was over. I woke up with a feeling of passing out while I was laying down mind you. From that my heart was pounding and beating so hard and fast and I really thought lights out for me. From that point it through my whole system out of whack for months. I could not go to work and was so sick I could barely function at all. So please be aware of anything you put in your body. Remember our systems are extremelly sensitive to everything.

Ah yes good old PVC's and PAC's. I deal with palps on a daily basis. As far as atrial fibrillation I am not sure. What do you feel with A-Fib?? I know people who have went for ablations and made matters worse for them. Did not take away palps at all, but actually made them worse. They ablate your sinus node which is a pretty delicate procedure. I worry any time doctors want to touch something that is so delicate. Have you had a second opinion?? I hope that you get some relief...

Thank you so much for your replies. It helps just knowing other people understand how difficult this condition can be. I have been on Toprol for 14yrs. I was diagnosed with MVP when I was 19 at the MVP center in Alabama. At age 30 I went to Ohio to see Dr Grubb who specializes in dysautonomia. I also take 20mg of Paxil for the anxiety and adrenaline rushes that my body gives me for no apparent reason. Dr Grubb told me I have hyperadrengic POTS. My system is always in the fight or flight mode. I try to stay as focused in exercise, and eliminating all caffeine. I'm bad with sugar though. I have a sweet tooth. So I'm sure that aggravates my palps. Again thank you for sharing your thoughts

I too deal with odd feelings at night after I awaken from a sleep. I experience a very faint heart rate (barely can feel it through my arteries) and then I get this feeling like my body is weightless actually like my heart is stopping. Then all of a sudden I feel a hot rush through my body and my heart begins to pump very fast and hard. It leaves me feeling weak and tired. I never could figure out what my body is doing at that moment. I don't know if my blood pressure is very low from being in a deep state of sleep or what. But all I can say is that it is a really horrible feeling. Very uncomfortable and frightening.