Star382000

that is wonderful April!!! Congratulations!!!!! :) :wub: :wub: :wub:

As previously stated, a resting heart rate of 100 is not bad at all everything considered and I am confused as to how the propping up can help at all. Can you clarify if it was your feet that were up or your head? Because if it were your head than I am even more confused because that's directing the blood flow away from your heart and brain Also, if you could not stand, how did you manage to jog at all much less a total of 8 minutes a day? I'm very curious

Dr. Grubb is amazing, I haven't had an appointment with him, but I've met him twice at conferences, hopefully whatever the results show, it is something they can work with to help you get to managing your symptoms better!

Definitely talk to your boss about it. Companies can't fire people based on medical handicaps (that's not the right wording but right now my brain fog is acting up so much I'm just going to leave it at that) but just as they have a responsibility, I feel that so do we. We have a responsibility to ourselves to stand up for what we need and what is in our best interests. Talk to your boss about the stress and see if you can come to some conclusions on possible accomidations so that it can all work out

I still feel the feelings I felt when I was first diagnosed with POTS, such a relief! And to find a community with people who know what you are going through and are there and supportive (for me it has been DYNA {the Dysautonomia Youth Network fo America - open to the world}) is amazing. My whole life has been changed and for the better. I would definitely go back to your other doctors with information on POTS and Dysautonomia so that they can be better informed and hopefully will treat those who they may see in the future with similar symptoms better than you were treated. It's been awhile since I've looked around DINET, but I know that DYNA has TONS of information including individual brochures geared towards doctors, friends, family, etcetera to help inform. I do not see how any competent doctor would refuse higher knowledge, especially in an area they are not well-informed on. I say go for it.

I am supposed to be taking those calcium chews that taste like caramel or chocolate, but I haven't been. I know people from DYNA who take calcium tablets though. I am pretty sure it's not fatal, or at least won't become fatal, because there is stuff you can do to treat it and I believe that the chews aren't too expensive

I may have it, I see the gastro tomorrow to find out what is the cause of my current set of problems. Basically because of what Dysautonomia is, it can be a cause for problems with any organ system etcetera, so many ailments that come when you have Dysaut, are in one way or another related, everything is interconnected

I think it is different for everyone (I'm not very active in this forum, but am VERY active in DYNA) and that it's good to set attainable goals for yourself, and when you reach them, set more. Gradually you will find that you are recovering, even without a "cure"

I haven't read the rest of the replies, but I thought I would respond to your original post. When I was diagnosed I was told that recovery would hopefully take place in my early 20s but it is something that I think giving just a few years to is way too little an amount of time. I was diagnosed about 3 years ago and many of my symptoms are mostly managed now, but other symptoms are popping up. I am by far doing much better than I was when I was first diagnosed, but I think a main component to that is that my attitude has totally been changed. I'm no longer focused on "when will I be better" but instead "what am I able to do and how can I live with this and not let it define me." I think a main thing is to, while maintaining hope for the future, finding ways to live with a healthy illness

With all of my heart I suggest looking into joining http://www.dynakids.org They have changed my life! *waves hi to Gwen*

I'd look into possible allergic reactions and at least stop with eating bananas. I don't eat them much because of my 'irritable' stomach but I don't recall experiencing such cramps and pain. I also want to add that for the past years I just LOVE salt. I would always be yelled at for putting SO MUCH on and I would worry too myself but now we know. My POTS doctor said that taking in more salt increases blood volumn which helps the blood pressure not drop so much when standing up. I CRAVE salt, it's madness. Good luck with the bananas

I know at times for me moving my head sideways can be very jerky and shaky. I have had muscle twitch/spasms all over but mostly in my legs and sometimes hand. I am always somewhat shaky/rocking back and forth with my pulse but that I think it is safe to associate with my ADHD? It is really interesting that you mention that you feel this most when you are laying down to sleep. That's how it gets with my leg's twitching, it's like I am trying to calm down so my body is then taking the time to act up I'm really sorry I don't know how to explain any of this and can't help any, just wanted to say that in a way you are not alone in this. We are always here to be of comfort if nothing more

I can't help with the legal stuff, but what she said definatly had better be illegal..That is just horrid, I can't believe it. I'll offer what I can and that is moral support and comfort. It's great that you have those lawyer friends and hopefully will be able to pursue something against what was said and the false reasons given for your being laid off. I just cannot get over what she said about depending on your boyfriend. People like that just disgust me more than anything You be sure to stop and try and calm down all you can as you pursue the illegalities (is that a word? ) because the more rational the better (as you know) Any support at all that I can offer I do. You are a very strong person and she'll get what's coming to her eventually. You take care and hugs and best wishes, once again Im really sorry youve been put in such a position and treated so terribly *hugs*

I've been reading and trying to find information about this but I figure the best place is to ask all of you! Im trying to see if feeling lonely even though you know you're not alone and just feeling so lonely is something associated with POTS. I'm starting to get really concerned about my mental health (I've been told to watch it and not be a hypocondriac but I'm seriously scared) and I just wanted to know if feeling isolated and lonely and helpless and just breaking down and crying and all with no specific reason, I mean even if people are talking to you and feeling social and having a pretty good day..I don't know I'm just really out if it right now but had to ask..thanks and sorry for being so discombobulated or whatever..yeah

Stacey I am sending you oodles and oodles of hugs and thoughts and best wishes, oodles and oodles. Sometimes when it gets so hard, even trying to take it hour by hour can help some. You have a wonderful husband and this illness isn't ruining either of your lives, it's just drastically changing them. And from what you have said about finding who your true friends are and falling even more deeply in love with him, in many aspects it's changed your lives for the better. Just think, as quickly as it came on it can go. Hope dies last. 9 years, in the overall that is not too long a time, it is good to vent and get all these fears and worries out, it's great to do so so that they don't build up and you crash horribly deeper and deeper. The friends that you do have a wonderful and amazing, your husband, words don't exist to explain how wonderful he is and how in love you two are, you have a life many do not, you have love which many do not. You are hanging on to the amazing love that surrounds you and lifts you up on those days and hours and weeks when it gets hard. But just think of how powerful that is, love. Sending you oodles and oodles of hugs and thoughts and best wishes, sending you oodles and oodles of more love