Wufflebear

ohhh Hard one... well I hate the nausea! But I also hate feeling sick when I stand up within a minute or two.... I guess I would go wiith the not feeling terrible when I stand up? BUt I better end my post or I will think of something else. (-;

Yep, I appreciate this place too. So much of my stuff I have just ignored or brushed off as 'weird me'...It is nice to have a group of people who actualy understand..Cause you know the docs just look at you like you are crazy or something..

I get the swaying, sinking feeling when I feel really bad..yea. I dont think I get the colors though cause I normally close my eyes and try to sleep thru it when it is that bad. I am definatly in a lessoned state of consciousness though... I dont get them nearly as often though... Hope that helps....

Yes, I have that experience too. The people I need most to understand dont. LIke todays 'drinking all that water and gateraid isnt helping you, you still pee too much" comment amoung others...even after directing them to this site and leaving books around and talking about it.... Then there is another who wont leave the subject alone. I seriously think I can not have a single conversation with out her suggesting something to me or asking me about the details of something I have tried, unsuccesfully, to explain a thousand times. I want a happy medium between being seen as lazy and slack and that of being someones lab rat. It is hard I know.... and I have no solution. Perhaps we should all wear casts?? Maybe then they would get it????

speaking of Mayo...How do you get refferred there? How does it work??

Yes, but when I hit that level I can't sit up or I grey out. I have found the shower w/ warm water coming down is the safest place for me... uh-hemmmm

Does anyone have a problem with vitamins making them nauseous??? Every vitamin I have ever tried has made me throw up/grey out nauseous... Thoughts?

I second this. I know I am loved (usually), but respected?? I dont think so. I dont think he thinks that I am doing my best...I have to sit down or lay down so much, and take naps, and don't notice stuff, and etc. etc. etc. He loves to hike and camp and I just cant. A hike makes me miserable if it is very far and camping (sleeping on the ground etc) is good for a night or two and then the exhaustion kicks me off. etc. etc. We used to bike together to work and I would try so hard to keep up, but I just couldn't and then I would be toast. He tells me to work out and, on top of working etc, i rarely make it..I just don't want to put myself over the top. I was thinking, It is like everytime I push myself and then crash and burn I get a new symptom or an old symptom becomes more severe and then the next time I have that new or improved thing too...I dont push myself beyond where I know I can for fear that one day I will simply be buried alive in symptoms. Yuck, so hard.

I will do more investigating. The stuff I have in a capsule is 300mg so I guess that is not much especially since it is DGL, although I guess it is not completely removed...it is just degraded to less than 2% er...ingredient... (-; I did some research last night. It does seem to kick down the foggies and anything that helps is a blessing, in my book. (-; Thank you as always!

yea, monday and then wed were terrible (wed not quite as bad) and now I feel like my heart is just bruised...like it has been beaten up. I suppose it is no wonder... But I wonder if it will just plain wear out sometimes!

Would the DGL stuff help mental fog and energy level some ,but not the rest of it?

Yes I get it too...and Yes sometimes I think it is the flu only it isnt and sometimes I get the flu and even after the flu is gone I still have the flu feeling.. Oh yes..... it is so fun. Sometimes I think we must all be pretty darn strong critters to stand all this and keep ticking..

You are not alone. I am feeling frustrated lately myself. For so long I just tried to ignore it, and even pretend there was nothing wrong with me...but then the things people would say to me (lazy, dumb, sick again? etc. etc.) were just too much too. Sometimes I feel like if I get another review that says "work productivity is cyclical...needs to improve" I will scream. The bad sick lasts a week, then there is the mediocre sick which lasts for weeks. Then I will think I am fine for a month then I can tell I am going down, then Blammo... Especially when it is just holding your urine for 3 min, to get off a phone call that causes the blammo.... Such a silly little thing?! It is maddening, and scary and frustrating and you are not alone. My theory about medicine is that the science ends with the text book., the rest is art and not very good art sometimes at that. My daughter (now almost 5) lmitates me sometimes in ways I dont like. She picked up the phrase "stupid lazy dog" in preschool (we have sinced pulled her out) and I heard that one as well. And I hate it when I have to lie in bed and my husband comes in and sits down and wants to know why I am not up and at work, or looks disappointed. Or my daughters disapointment when I say "no I can't go on a hike today." When can I ever! Sometimes I do, just so I dont see the look, but then I pay...Oh the baggage. lol I wish there was a cure too.

Hello!! Yep, I get it too. It is like the flu without the flu. I have put a plug on the shower drain and laid down. A plastic bag strategically placed works... I usually put a big towel down and laid on that too...I did not like the idea of laying down where other peoples feet had been. But I have to keep the air cool so the heat does not bother me...If it isn't one thing it is another...lol Excersize can help me too sometimes for a little bit, but when I am like that I find it I am even worse off after wards. I take 2 ibuprofin and some licorice root (just discovered it) and it seems take the edge off a little. But I have not had a chance to try it on a really bad day yet...Just bought the stuff a day ago... Hope it lightens up soon for you...

So i got up the guts to try a small amout of licorice root in capsul form. It seems to take the edge off!!! I love this place.

My husband has supraventricular tachycaria and I have Pots/ncs...and they are kind of different from what I can gather. My husbands chest pains are squeezing and mine are pinchy or like a bad bruise. He gets vertigo where the room actually spins, My dizziness is like after you take too much benydryl and you feel like your moving even when you are not... But the room is not moving. His heart problem, I beleive, reads abnormal on an EKG, mine does not. His will spead up and skip and even stop for seconds at a time, mine just speeds up...but it is a regular (although fast) rhythem. He can handle heat after he is used to it, I can't. He does not have to constantly drink and urinate...I do. I can see how someone might misdiagnose if tests were not run, but I am not an expert in any way. Hope this helps.

Showers are definately yucky. I get mine at night after my daughter is in bed, that way I can hold down mine.

I have had ncs etc since I was 5, although perhaps earlier. I thought everyone experienced the visual and auditory interference...It was all quite unexplained till I was 31! I was in the hosptial many times and they ran all kinds of tests. From what you describe I think yes she may very well be experiencing it. Does she have trouble in the morning? Does she prefer to stay where she knows things? LIke near a place where she can sit or lay down (and feel safe)? Does she get pale if she stands for very long? Does she hide, or curl up in a ball sometimes? Does she sometimes get hot then coolish then does her vision kind of gray in from the outside? Does she see colored things floating around?? (she may have fun describing the colors, I did. You may notice she covers one eye or bobs her head around to see things...ie: she is trying to see around this stuff.) If she sits down suddenly she may be very hot if a spell is on her... I had tons of tummy aches when I was 6-9 years old and it was the nausia and being upset from what I was going thru. I hope this helps. I have a 4 1/2 year old and watch her like a hawk for it...

Thanks to you all! Last night I had about two hours where I felt fine and then it started coming back again. Thats the part I hate the most I think. Sometimes I don't realize how bad I feel till it goes away and I feel so "light and fluffy and clear" and then whammo I am back in it..to varying degrees....but definately back in it and definately not "light and fluffy and clear." Thank you all for being so wonderful! It helps to know I can ask any question here and get a good experienced answer, without the doctor looks. (-;

I keep wanting to ask this but then not doing it but I think I will just do it. I read somewhere that POTS and NCS are benign...It is not secondary to anything in my case..It just is..Is that true?? It can't really hurt you? Sometimes when it feels so crummy I get worried and this last spell just won't quit. All thoughts are appreciated and sorry if I am being a baby.

yea. Mine appears to be getting worse or changing...I dont know anymore the difference. (-; I can only think that I have to keep working till I get fired for being unproductive and then deal with what to do next... but who knows... Sitting up used to be ok for me but now the longer I sit the more of a problem I get..It is a slower onset then standing, and of course the risk with standing is that I will have to hit the floor which is no fun either. Although at least I always know it is coming...so that helps. I don't know what to do but keep on keeping on and deal with what comes, when it comes. ya know?

none. I have tried a few but they made me throw up, so I quit.

When I am having lots of symptoms I get tingly lips and face and hand. ...Kind of like a twitchy feeling (but nothing twitches), kind of like electricity flowing thru??Hard to explain. But yes, I get it too.

I dont take florinef but any vitamin, suppliment, you name it will make me puke my brains out. It is miserable I agree.

I definately get very short tempered and have to work to not be short with people during those same times. I view it as my body is using all available energy to just manage my internal functions, so there is little left for me to deal with anything other than fair weather.