Wufflebear

When I was six I had terrible stomach pains and diarrea etc, but the headache was more mild...like what you experience when you are streessed or in pain. I just remember stomach cramps but my mom said I would curl up in a ball and make fists with my hands and get very pale. The docs at the time told my mom it was abdominal migraines...

Ok so my daughter had bubble gum sunday evening and we went into get a shower ( we co-shower...it is faster, easier etc.) Anyway, at the end I always give her my toothbrush to brush her teeth with and then she has a game of spitting out toothpaste foam all over my tummy.

Well mommy was not feeling good...it was a shower after all. So I was sitting down and handed it all to her, forgetting about the bubble gum in her mouth...

So I finally noticed that the toothbrush looked really weird, when she had removed it to spit foam on my tummy again. Then I remembered the bubble gum...which by this point was all imbeded in the toothrbrush and also smeared all over my tummy....

OH GOOD.... So then I am trying to make sure it isnt on her, then the hot water runs out. Then I am trying to basically peel all the tiny hairs off my tummy which are now well glued together in the cold water...

yup....every day ya learn something new.... No bubblegum in the shower...New rule!

Just an update!

I am loving this stuff. Still having break thru symptoms (showers, warm car, standing over about 15 min, trouble in the am if I am late for the med....I can definately feel it!)

Anyway other than the bizaar dreams so far it is great.... Mostly just lots and lots and lots of dreams... But one night I dreamt I was being chased by my laundry basket around the room..... he.he.

I am so sorry they treated you badly. People can be such dumb *^& things sometimes.

I understand that understanding chronic illness must be tough for most people....at least it apparently is but man....I wish they would rub two braincells together and at least try!!

I once went to the ER with stabbing chest pains everytime I breathed in and tachycardia and was told "you konw when you come in here and say you are having chest pains we think we need to move people out of ER beds for you, and you certainly dont look like you are having a heart attack."

oh well, perhaps I should have been more creative in my description.......idiots.

Do file a complaint!

In my case I was diagnosed by heads of departments as having migraines and put in the hospital over it...but I really do not think what I have is migraines, not on the every day basis anyway. As far as the bp headaches, I am always told 'oh you are probably just nervous'.... Not.

I cant get the daily ones taken seriously at all.

headaches can be really awful and definately make ya crabby! I hope you find something that helps.

My face goes numb (from the eyes down) every time I stand up or sometimes If I sit for very long... It is like it feels stiff or superficialy numb.

I cant get a doc to take it seriously... I get the 'look', I am really getting furstrated with it.

Sometimes my lips will tingle in a big way too, but I have to be pretty stormin for that.

I would love to know why my face goes numb when I stand up, darn near every time. Inderal is helping but if I push myself very much or overdo it....then I still suffer.

Found this: http://www.ndrf.org/Newsletters/2003_Spring/Spring2003.pdf

Look at page 4, #12

When I am havieng a very bad day I get this, everything tasts funny and also I smell funny smells that just arent there... But only on really bad days.

Yep. Sometimes I think that is the best way to describe the headache I get when I sit or stand....Like I was doing a headstand feeling...

I have had several MRI's and all were clean. Just started low dose of beta blocker (a few days ago) and so far I feel so much better. The only thing that has showed anything was the tilt table test of course and one a few EEG's.

Yes, I get them too. I have been worked up for migraines....but I dont beleive that dx. The headaches I get are prompted by standing or sitting with my feet down for more than about 2 minutes... And it is pressurey... And they last for 3,4 weeks solid...Migraines cant do that without you needing to be hospitalized or so I was told as a kid. I was put in twice as 'status migrainosis" ( at 9 and 11 years old) which is what they call it when a migraine headache wont end I guess....

Anyway, I know of nothing that helps short of not standing or sitting.... (-; Tylenol does not touch it usually and they can be wicked. Sometimes there will be moments where it feels like swimmers cramp behind an eye or in the back of my head...and then it just goes back to that 'gravity is pulling my brain down / my head is trying to explode/ horrible pressure' feeling.

I have taken my bp a few times when it was really nasty and got numbers like 157/50 or 148/52...

I just started inderal, beta blocker, and so far I do get a headache if I stand to long, espcially if it is close to the time to take my daily pill....but the headaches are laughably smaller! So far...(only been on the med for a few days...)

Good luck.

p.s. I also know that for me heat on the back of my neck is horrible, cold is better.

Good luck..

I am so excited. I have never actually met anyone who has what I have...dysautonomia of any sort. So I am really excited!!!

I get something once in a while that might be similar...

I will wake up, (has happened anytime between 1am and 4am) but I am kind of locked in that half awake half asleep mode and I am in incredible pain, like paralizing pain. Usually the pain is right in the middle of my back like a stabbing pain that then seems to spread, it starts in a spot just below my left wing. And my heart is going a mile a minute and I am gasping for air and I cant move and feel totally panicked. I never feel panicked except when this happens it is like being locked in ****. Then It gets worse and I cant take it anymore, and I dont know what happens ,but everything goes silent (symptoms anyway) and then I 'wake up' and usually my face and pillow are soaked with tears and I am usually still crying...If I try and get up to get a drink of water and go to the bathroom ( I am usually parched at this point) I am guaranteed to have syncope or near syncope as soon as I stand up.

I dont like it at all.... I dont know what triggers it but it only happens every 2 or 3 months usually, but comes in little waves...like a few nights in a row...then it will go away for a while.

I confirmed it w/ the doc and it is right. 60mg of the LA. I took the first one yesterday and felt great...No big HR jump when I stood up. Lowest point was my shower in the evening but it wasn't too bad. So here is to hoping it keeps up that way.

it is the long acting stuff. I put in a call to the doc to make sure it is what he intended.

They wanted to start me on a inderal to help keep the heart rate from jumping up when I stand and keep it from climbing too high, so it then would not try and crash down.

It is inderal at 60mg...isnt that high??? It is in a capsul too...so I can't cut it....

thoughts??

Yea, I know. But anything 100 or over when just sitting w/ my feet up is not good on me.

I have noticed it for a while but then when my cardiologist did my tilt table test, they put me up and my hr went up and then a bit later...I thought it was just a miute or two he said "Heather, are you falling asleep?" and I was like No...I just feel out of it and spacey. And then Definately when My hr went over 110, I was out of it, totally. I mean if someone talks to me I answer but it is really hard to focus and well....It is like being way inside your shell of a body....trying to interact via a big robot body. When I was little I would say that I was just in my head only, (like a wizard of oz type thing)...trying to drive a big robot.

Now my body/soul are more connected but sometimes it deos feel like my entire being has retreated to my head.

yep, now that makes sense.... lol

I get facial numbness when I stand up or excersize and I shake too when I am really symptomatic and my HR is over 100 for very long at all....

I am supposed to start a beta blocker to see if that helps, but I have not started it yet. For me once I develope a new colorful addition to my pots....it is mine forever....

Sometimes when my heart rate (sitting w/ feet up or laying or even standing still) starts hovering over 90, or particularly near 100 I feel like I have reduced consciousness. It is like time just sort of slips by unnoticed... Anyone feel that way??

I am so sorry.... I hope you are feeling some better. It is scary sometimes when our bodies freak out, especially when no one gets it...docs, family, husbands etc.

I think sometimes people dont understand so they shut down or get offensive or react in their own 'special' way. People are inherintly afraid of what they don't understand... Be it animals, nature, health or people.

That is my theory...I know it does not help make it easier to take when you are the subject of the reaction...How I wish people around us could live thru one decent to bad episode happining to them, so they could understand...

Sending you hugs!!!!!

has anyone taken L-tryptophan and did it help?? I took it briefly in high school before bed and thought it was great, but then it was taken off the market because of a contamination issue. I just wondered since I read that it is involved w/ seritonin that maybe it might be a good puzzle piece to explore...

Has anyone taken it? Did it help? Does anyone know anything about it?

I get pingy pains down there a lot, sometimes more and sometimes less....and whenever they do a urine sample test on me they see a few white blood cells there, but they tell me it is probably nothing.... so I dont know...

Mine are like a thought stream too....Not really a dream as there is no plot or anything...Just lots of poeple and consternation and sometimes it does not happen. Usually I think it has happened but am not sure... lol

It seems like whenever my body goes Potsy or orthostatic or fainty to any degree over minor...my knees get all wobbly afterwards. It is like they won't stay straight up...They wobble between being bent and being hyperextended...No middle ground. And if it wobbles too much when I am doing something it hurts.. Like something gets very briefly pulled or pinched...

Also since december my face goes numbish when ever I stand up and those fun orthostatic symptoms start... it is very weird and my docs just look at me when I try and explain it. Does anyone else do this?

I feel like heck today....)-;