mom4cem

Sending lots of support and hugs your way. It certainly has been a tough battle for you but 10 yrs later you are still fighting, not given up and that certainly is worth a lot. I hope your doc can recommend someone who he feels will give you the same respect and care that he has over the years.

Super, I hope this is just the beginning!

Sorry about your relapse. Very interesting about the possible connection of the triggers just being by where you live since you feel well when you are away. Any idea what it may be? I hope by doing whatever you did before that you will get through this bout quickly.

Welcome and sorry you are feeling so badly. I sometimes have the tightness in my chest and feel like I can't breathe. I had a pft done and it comes out normal though my chest feels like it has a band around it, tightening all the time. I also have almost 24/7 adrenaline rushes and it gives me flip flops in my stomach, sometimes makes my heart race for no reason or just hangs around and my heart jumps all over the place when moving around. I also have MVP and the heart itself does not cause the problem it is the ANS/dysautonomia that causes it. I have extra beats(pac,pvc) every day but it comes from the dysautonomia. So please try not to worry that there is something seriously wrong with your heart. It may be a good idea to have an echo and you can be sure but most if not all of the symptoms are usually due to the dysautonomia. Wish I could give you some clues but I do send tons of support and well wishes to you.

Stay strong and sending tons of support to you. I'm sure your son will be fine and everything will work out all around.

What a horrible way to be treated I was going to suggest zithromax,,that one seems to work the best for me w/o side effects except for some stomach upset sometimes. I tried levaquin,,gave me the shakes very badly. Biaxin truly put a hole through my stomach. Hope the z-pack works for you. Try some warm compress on your forehead, over the sinuses. Kudos to you for sticking up for yourself and not letting her getting away with treating you like that!

I have the adrenaline rushes also. with the shakes and teeth chattering. Sometimes many, many times a day. The b vitamins do play an important role in the nervous system but if one more than another, I have not researched that far into yet. I have been reading though that choline, one of the b vitamins, is imp. in helping to produce acethycholine, a nuerotransmitter for the parasympathetic system. I was hoping that by taking extra it would do something, but I hve been taking it for about a week straight and no change as of yet. I know you are under a lot of pressure and the work must get done. Any break you can get, take it. Pls call you doc if this continues.

My heart and support go out to you. Please try to continue to enjoy no matter what may come. (((((hugs)))

I have to agree with so much already posted. Sometimes I feel yes, I brought it on by trying to be supermom, superfriend, superwife etc. Run here, run there, yes everyone,,never saying no then BAM!.. But, I still do a lot of things, I have to and for me it's good it forces me to move and to go. I still overdo it at times and pay the price. I do think that by having some form of dysautonomia(I don't really know which yet) that it does help me to focus more on taking care of myself, saying no when I can't do something and not feeling bad for doing so. It has helped me to appreciate things, people etc..more.

Not much spare or down time here. Work p/t , sometimes a full time day here and there. Drop off kids, pick up kids, who has football practice 3x a weeks, soccer practice,(each does that 1 practice a weeks and games for all sports on the weekend, playdates,.etc. No wonder one is always wired but tired! I like to cook(sometimes), took up a yoga class one night a week with some girlfriends and try to exercise when at the kids practice by walking if I can otherwise I sit and vegetate.I can't wait for sports to end for the fall/winter and I can get some down time. Sometimes I think all the running around is good and bad. It keeps me going and I don't have much time to dwell on how I am feeling but then too much makes me feel worse.

I also get twitching, not sure what it is from though. I suspect it is my nerves being irritated from vertabrae pressure, especially in my legs, and my neck muscles are always tight, my arms are always getting tingly in certain positions,,I think that is why I twitch. Adrenaline surges, I get them every day, several times a day. Sometimes it leads to some nasty tachy events other times it just feels like my stomach is dropping, like on a roller coaster with internal trembling. When it shuts off, I know it, all of a sudden it's calm. I have been taking a beta blocker(not doing much good though),klonopin when I need it, some vitamins including l-theanine, which can help calm the nervous system. Eating diverts blood from elsewhere to digest, so I have read. I have become tachy after eating as well as bloating. Sorry I have not much to offer, but I do hope you feel better

Glad to hear you are on the road to recovery, get well soon!!!

Hi Pam, Sorry you are feeling bad. Perhaps a change to a different type of blocker or calcium channel blocker might help at least during this time while your asthma is at its worst. I hope you get some answers tom. at your appt.

Welcome. I wish you the best on your visit and hopefully you come away with knowledge on how to deal with what is going on in your body, what is going on etc. Till then please do whatever needs to be done to keep yourself well.

Great news, get out there and enjoy!

What a putz! I had to look up what a bellend was,,new word for me..lol You received some replies that I hope were helpful, at least I hope they were helpful. I hope you get the assistance you need soon to resolve this. Maybe Nelson was actually laughing at the posters "bellend"!

Welcome. This is a great place for support. Hope you are doing well today

I have MVPS also. My mother has symptoms of it at times even when she was younger but no one has ever mentioned MVP to her, and one time that she did have an echo they said all was normal. My sister as far as I know has shown no symptoms of it though she and I have never really talked about it much. My Grandmother always was in bed, according to my mother, and always thought she was dying. Maybe she had anxiety, MVP who knows. I do know after be tested at the MVP Autonomic Center of Ala., that my test showed blunted dysautonomia. I just tell people I have mvp and dysautonomia, most have no idea what either is. So many symptoms overlap so many other diagnoses that it is hard to pinpoint to one certain disease or syndrome at times. Enough to make one crazy

Thanks for sharing your great news, that was great to read. You go girl!

I also have not seen any of *those* posts by you but I also do not always read each and every topic. I will miss your posts also and I do hope to see you back here soon ((hugs))

Hi ling, Sorry you are feeling so poorly. Have you tried the usual, crackers, ginger ale when you can stomach it. Small meals throughout the day. For most the nausea does get better after the first three months Your body now has to try to circulate more blood volume for two. It certainly can give you tachy and all those other great symptoms. With all three of mine I had some strange ones. My first I had tachy whenever I moved and the most wicked cramps in the early part of the pregnancy as well as some nasty heartburn. My second was not too bad. The third gave me cramps all 9 months long as well as tachycardia events, runs of pac and pvcs, uti's, a whole bunch of stuff. Everything turned out fine During the second to third trimester the increase in blood volume makes a lot of women feel much better, but make sure you keep up the increase in fluids to a nice level for yourself. I used to chew on ginger pieces from the health food store, used ginger root capsules as well as ginger candy for heartburn and for nausea. Take care of yourself, I'm sure you will do great and will start to feel better soon

Over the past year I have begun sweating even when it is not hot, warm whatever. It could be 40 and I sweat. It was really becoming embarassing. That started last Nov and maybe up until a month ago it was daily. Lately it has calmed down but something else took its place Welcome, glad you have received some answers and hope you begin to feel better soon.

Have gerd here also. What came first, the chicken or the egg? I don't know if I had dysautonomia long before I had GERD but just did not know it , but I also had IBS diagnosed since I was about 16 or so. Interesting you should bring this up, my GERD has just reared its ugly head again, and it is very nasty this time. ARrrrgh!

I've had pvcs and pacs daily for years now. Worse at times than others. Lately they have been off and on from 1-2 a day to 20,30 or more a day. I also get what feels like adrenaline rushes. There have been times that whenever I would move I would get a pvc. I have worn an event monitor for months at a time and caught various events, all which they considered a nuisance but benign. Also lately I have had problems with sinus tachy. I have recorded these with a event monitor and doc says it is sinus tachy. It gradually comes on, sometimes I feel that dread or anxious feeling in my stomach and then my pulse gradually quickens and peaks anywhere from 110-140 and then gradually comes back down. That has been the latest. Seems like once you get used to one thing another pops up to keep it interesting.

Good luck. Hope you get some answers