Wufflebear

Hello All, Ok here is the one I like for when I cant bare to be standing up too much... It is called 'Tuna Yogurt Bake' Nuke 2 potatoes, cut them up and put in bottom of microwavable container. Put in 1 can of tuna Put in enough Vanilla Yogurt to cover it. Sprinkle wheat germ (or matzoh meal or corn meal) on top. Nuke Five minutes Eat. (-; I love the POTS cookbook Idea...A cookbook full of stuff that can be thrown together and simmered w/ minimal standing & fuss... I like it!

I am sorry Lisa... That is the answer I am getting too. I used to just get told I was making it up, but I am not a kid anymore...so they try more sneaky ways of saying it perhaps... Then they say I can take this or that and this or that just magnifies my symptoms even more... I wish every doc who gave that answer could live in our shoes for a while and experience a Loss of consciousness in addition to all the other stuff. My guess is they would not be so complacent. Your doc sounds nice... He sounds like he wants to help you....but the science just isnt there.

Yes, I have those most every day... Do you ever notice that it feels more uncomfortable when you breath in?? That is one of my oddities. My head feels better if I recline or lie down. I don't know what my bp does then but my pulse is usually resting around 100 then, which is high for me.

Yep sounds potsy to me too.. I like the "angry and want to smack you becuse you dont understand and arent even trying to" disorder... lol I have that one too....Maybe that is why they don't prescribe canes for us....we might smack them with it. lol

I get aches in my arms and legs too. Particularly any area that has been hurt before and also any area that see's a lot of use. (like my fingers/hands..thy bother me a lot and I work on a computer all day.) My ankles and feet will hurt if I have to hold down the break peddle at a long light. Heat helps and sometimes ibuprofin but I have so many reasons for taking that stuff that I try to avoid it. Usually I just put them in warm water or near the heater or rub them (my hands)., My feet ache I think after being still too long.

I get the numb butt too. Actually I regularly loose contact with all sorts of body parts... Butt, privat parts, breast, leg.. All I have to do is stay in one position for a few minutes and I loose contact... Earth to butt?? Come in butt?? lol

well my normal level of dizziness/lightheadedness is like a mixture of: 1) taking tooooo much benydryl only w/o the benydryl...feels like you are moving even after you stop moving. 2) being slightly drunk...but much less fun. 3) That I have rode my bike or run or excersized way too much...mind is shut down and in flat line mode feeling, head feels overly pressurized or something. Or at least thats how I explain it. (-;

When I was little (6 years old) they called my dausautonomia .....Hypersomnolense and Daydreaming! Or should I say they brushed my dysautonomia off as Hypersomnolense and Daydreaming....I would definatly check it out. I never had any amazing test results...just mild abnormalities here and there that all got brushed off.

I get that feeling of something flowing thru me too when my heart seems to beat really hard and fast...also I notice my hands and legs feel warm...which is a change. I have tried zoloft and paxil for about a week each and both made me hugely sick.

Headaches for me usually start in the back but then it gets to be a weird pressure thing. It feels like there is simply too much oxygen in my head...And when I breath in it feels weirder/worse. Usually there is the headache/pain part of it but also a discomfort part. Anyone else have this? Where the pressure feels worse when you breath in?

I was full term... Personally I have been sick all my life. I think Dysautonomia created that personality in me...

When I was in college and trying to write papers I used index cards. One idea, or quote or whatever...per card. Then I could lay them out on the floor and reorganize them etc...I found it easier to remember where I was and also easier to conceptualize what I was doing, especially when I felt bad. As far as excersize...evening has always been my best time for that...but only in short bursts.

I am worse during ovulation, just prior to my period and just after my period. Some months I think the only time I feel ok is when my period is here... lol

HI. I have been sick since I was little. I guess I always thought the one 'person' who did understand me was G-d and that even though I could not figure out why He put me here, cause I obviously am not cut out for it...He must know, I figured... When I was little and would feel so bad and would feel like I was spinning or rocking when still I used to pretend G-d was rocking me. lol I used to pretend, when I was in the hospital that He was right there holding my hand too... (my mom liked the footprints prayer and I think it went to my head. ) In high school when I was bed ridden for nearly two years I hit bottom. I figured that it would be a load off my family if they came home from work and found me gone. It scared me and I prayed like crazy...amazingly that whole overwhelmed feeling I had left instintaneously. G-d and I are good friends now, no matter what I think of what he dishes me out some days. One could say best friends, I tell him everything, we fight sometimes, I cry on His shoulder and make up....lol, but in the end our relationship is darn firm.

My family doc just reccomended this for me 20mg once a day. I only took it twice cause it was horrible. It made me way sicker on top of my normal sick...which I just could not handle and still function to any degree... So I quit it. Maybe it was too much, i dunno.....but it was not good.

I too will get a headache if I have been laying down too much, or at least I used too...I dont get that luxory anymore (since having a child). I get a massive one if I turn my head upside down as well. My theory, and it is just my theory, is that the blood vessels at the base of my brain or whatever dialate causing the blood to fall out when I stand (hence the headache upon standing?) and also a rush of too much blood when I lay down too long or turn my head upside down...I also know that putting heat to my neck when I am symptomatic makes it worse....which would make sense if the blood vessels were already too dialated... Just my theory.

I can relate too. I have had this since age 3 or 4 and I am 33 now! For sooooo long docs said it was in my head etc.... Just cause they could not think of the right test to run that would show the problem. Failure of imagination on their part. I dont know what is next in this 'walking the tightrope' thing of ours but... Just know that the one who is lacking is them. You are right, they are wrong. Have patience with yourself. Sometimes we are our own best doctor.

Does anyone else notice after they have been having a bad spell that their knee joints get loose?? Kind of like walking on wet spagetti noodles? It annoys me so I end up locking my knees back. Just wondering how common this is w/ us? ( I have always tended to lock my knees when standing...well one locks and the other wiggles then I flip...my ballet teacher in grade school and I went around and around on that one.)

Thanks guys! It was weird friday, the day i got the chair, I left work without a massive headache for the first time in over two months! That in and of itself was SOOOOO good. When I sit up for too long and finally recline a bit w/ the footrest I can actually feel some of the yucky feeling drain out... How do you spell relief? CHAIR. (-; The chair is old, massive and a little quirky but it does help. (I did not pay for it, they just dug it out of storage for me. It used to belong to the owner of the company until they sold..then it floated around and finally landed in storage.) I have always just tried to hide my physical problems and switch jobs when I could not do that anymore...but as I am in such a small town I am finally having to face the music, so to speak. (-; Thanks everyone for responding...I love having a place where people understand.

So I finally broke down and asked for a chair that had a foot rest. I had seen one floating around a while ago. I have tried to prop my feet up on boxes, shelves but nothing really does the trick. I need to get my feet up some days as it does reallyhelp my ability to cope. And my old chair reclines but it is springy so you keep bouncing back up... They brought a chair this morning and it is MASSIVE. It is kind of awkward but it does help. I can feel that it does take the edge off how yucky I feel. However I feel SO DARN GUILTY. And the looks co-workers give me as they walk by is really precious. I have always just denied my problems and tried to just fit in, but it does not work real good. I feel like a gimp or something. This is the first thing I have asked for that I actually got here...and I had to spill a good deal beans to get it. Now I guess I feel kind of vunerable, I guess.

he.he. My nickname as a kid was pooh....Maybe i should go by "SUPERPOOH" or maybe not....lol

me too, but it is one of my comes and goes symptoms and luckily never lasts long. Do let us know what you find..

I echo some of the posts. I would want people to be more compassionate and also to understand that if you see someone who seems to look ok but yet does not always do the best at coping or pulling their weight...that there is probably a good reason. I would want doctors to understand that the human body is more than a group of organs that can be empirically tested and sorted thru...I would want people to know how yucky life in silent suffering can be sometimes. I would want people to give us the benefit of the doubt and trust what we say even when the tests say nothing. I would want people to know that even though dysautonomia seems on paper to be simply a mass of seeminlgy benign and mildly troubling symptoms that it hurts and its scary. I would want people to really comprehend what it feels like to think you are struggling to survive on a bathroom floor somewhere in silence... and then to come out and say "oh, me? yea, I'm fine. How are you?" I would want doctors to understand that not listening, beleiving and spending time with your patient is criminal.

oh fun! Ok so I would want to have the energy of a 3 year old, and the imagination too. I would want to be able to "beam" to wherever I wanted...No more zillion hour flights...I could just beem there..ya know like in star trek. And I would have the ability to twitch up whtever I wanted... So how about "supermommy" for a name. I like that.

Hi, When I was in college I got my showers at night, just before bed...we did not have a tub available. But just after college I lived in an old house that had been converted to studio apartments. Three to a floor and we all shared the bathroom. It was a tub shower. So I bought two rubber mats and would put them down in it. Then just ran the water over me...I did not fill up the tub. If there is no shower attachement you can get shower hose things from walmart and other places that fit over the tub spigit. That way you can sit on your nice clean mat and still get the shower affect. As far as friends not understanding..that is hard. Give them a brocure if you have some or just tell them you have a chronic illnes...likely they will understand that part enough.