Wufflebear

oh yea, and I fired a gyno once becasue I told him about my pelvic pain, which was probably related to my autonomic issues etc. He looked at me and said "and of course your husband is faithful..." So I fired his sorry keester.

I grew up in missouri and was sick the whole time pretty much. Basically you have to have air conditioning in your home and car but I found it is best not to turn it on too much...ie: let house/car get too cold because then when you have to go out or go from outside to inside it can trick ya off. This bothers me anyway...I usually just keep things cooler than outside... When we go to florida every summer we do this and it is ok for me. Otherwise I lived in the pool. I took a nap in the afternoon when the sun and heat were the worse. Now I live on the oregon coast where we never get above like 60 degrees....but periodically I drive down thru california to see family or into the valley in oregon and it can be real hot (high 90's or into the 100 s. I put an ice cube under a light sleeping hat on my head and an ice cube in each err side of my bra...then just dont get out of the car cause you will get funny looks. (-; My car does not have air conditioning.... so I improvise. Also sucking on ice cubes is good. I used to make ice cubes out of lemonaid and orange juice. I loved, loved, loved those as a kid. They would let me be outside with friends (in an inactive way) on hot days and not feel horrid.

Good for you!!! I know it is frustrating. I am seriously considering bringing all my dysautonomia info..books, internet print outs w/ me everywhere I go...Then I can say...See?? Read!!! In the mean time give me what I want! Now for the craziest things I have done in a hospital? Well when I was 9 and in the hospital for evaluation of Migraines, Irritible bowel and a possible seizure disorder...I got sick of them not helping me so I ordered Pizza over the rooms intercom...I did not get the pizza. Also once, at 11 after a spinal tap, and tons of tests and medicines in the hospital, I got tired of them poking me with needles (by 16 I looked like I had tracks for petes sake!) so when the nurse came in one day for the umpteenth time and then turned around, I grabbed a syringe and held it up!! Yea, that was pretty over the top...but I was a dumb kid and way over my limit. The result you ask? well the nurse backed out and got the doctor, while my mother sat in the chair and laughed and held me till I put it down (which I did right away). The doc then came in and said "it is obvious she has some anxioty issues..." ya think?? At 16 I called a nurse a vampire....It did not go over well. At 17 I decided I was allergic to doctors and began an avoidance stratagy which has helped me avoid these errr moments.

Interesting. Yes mostly it triggers off if I am driving at night. I thought it was maybe the heater running, so I quit using it and it still happened. I thought maybe the air in my car was over dry (would be a miricle since I live on the oregon coast where if it not pouring (to the tune of 70 inches a year) then we have really high humidity)) so I would drive w/ the window open and it could still happen. I get it sometimes at work and also at my daughters ballet studio....lots of lighting in both places... I will investigate...

oh yea, I have been faining since like age 3. Getting a good reading will be a challange. Do you think Dr. Grubb or anyone like him would read test results for me?? I have no idea how insurance would work with that though. Fainting I think is the worst thing imaginable. I hate it and have spend the last 30 years tweeking ways to avoid it...so being unable to do my tricks scares me a little but man fainting in a hosital is WAY less scary than fainting on a downtown street, or a bus, or a bank or in my bathroom all alone or etc. etc. etc. Or fainting just cause I pushed up on an arm to roll over on a BAD day.... His attitude is very annoying to me and he is not up to date on the research, he said that himself...

Thanks for all the info guys!! I really do appreciate it. I think I get more good answers here than at the docs...and this is considerably cheaper. lol

My eyes, both or one at a time, tend to get sore..then water...then burn so bad I can't hardly keep them open. I also have a tear duct (lacrimal sac) that got acutely infected and abcessed a few months ago...but the burning eyes happened before that too... Does the autonomic system control this stuff too?? I am not sure if the eyes are dry or what, cause they water at first...But the burning is awful.

yea, sometimes it gets really narrow and sometimes really wide. I have given up trying to predict what it will do....

Oh that is too funny!!!

OH MY GOSH!!! you know how long I have looked for that chocolate no bake cookie recipe?? I love those and could never find the recipe!!!!! Now my life is complete! lol How about a good & fast no dairy ice cream recipe... Non Dairy ice cream ingredients: 7 eggs 1c sugar 1/4 c oil couple of smooshed bannanas or 1 pkg strawberries mushed up or 4 tb nestlees quick Directions: Seperate eggs. Beat whites to a fluff. Mix yolks, sugar, oil and flavoring together. Fold whites into yolk mixture mix well Freeze. (mix a few times while freezing as well...just once or twice is fine.) eat! My daughter calls these chocolate nummy goodness, Strawberry nummy goodness and nannery nummy goodness.lol

When I was little, between those EEG's and my syncope and staring spells they evaluated me for seizure disorders a lot...Mostly put me on medicine, like Ritalin etc to try and help it..but it did not help.

I did the squeeze test thing and inside of 6 squeeses my hand started to ache and freeze a bit. So i did not continue. Then I did some research... I found this link on hand/finger cramps http://www.dystonia.ie/page.asp?Page=47&Menu=33 it is pretty interesting... "Cause Writer?s Cramp is believed to be due to abnormal functioning of the basal ganglia, which are deep brain structures involved with the control of movement. The basal ganglia assist in initiating and regulating movement. What goes wrong in the basal ganglia is still unknown. An imbalance of dopamine, a neurotransmitter in the basal ganglia, may underlie several different forms of dystonia, but much more research needs to be done for a better understanding of the brain mechanisms involved with dystonia. Cases of inherited writer?s cramp have been reported, usually in conjunction with early-onset generalised dystonia, which is associated with the DYT1 gene."

On the night driving post we got into a discussion of EEG results when given photic stimulation...The post was getting interesting so I thought I would put this out as its own topic... It seems at least a few of us have gotten some interesting results that have been dismissed by docs... My abnormal EEG (this was back in 1983) said "EEG showed focal abnormalities in the left temporal and right occipital areas and was said to have had possible seizure disorder." The second 'Normal" EEG (two months later) said "The abnormalities seen on the previous recording was no longer present. She also had visual-evoked responses which were mildly abnormal due to the asymmetry of responses. The absolute ltencies are prolonged on the right side compared to the left, Suggests possible mild decreace in visual acuity on right or mild optic nerve dysfunction on right. " and "Brainstem evoked response test. "auditory evoked potential problem Normal bilateral absolute latencies of all peaks normal and all interpeak latencies normal in the right. Mild delay of interpeak latency between waves 1 and 3 on left. Suggests possible low brainstem lesion w/ intrinsic brain stem dysfunction." The docs said all was normal though... http://dinet.ipbhost.com/index.php?s=&show...indpost&p=48420

My abnormal EEG (this was back in 1983) said "EEG showed focal abnormalities in the left temporal and right occipital areas and was said to have had possible seizure disorder." The second 'Normal" EEG (two months later) said "The abnormalities seen on the previous recording was no longer present. She also had visual-evoked responses which were mildly abnormal due to the asymmetry of responses. The absolute ltencies are prolonged on the right side compared to the left, Suggests possible mild decreace in visual acuity on right or mild optic nerve dysfunction on right. " and "Brainstem evoked response test. "auditory evoked potential problem Normal bilateral absolute latencies of all peaks normal and all interpeak latencies normal in the right. Mild delay of interpeak latency between waves 1 and 3 on left. Suggests possible low brainstem lesion w/ intrinsic brain stem dysfunction." This topic is interesting! The docs said all was normal though...

So I want to make sure that they do my tilt table test correctly and that I get as much out of it as I can. What should I be sure they do? their letter just says " you will have electrodes placed on your skin to monitor your heart rhythem, and a cuff on your arm to monitor your blood pressure. An intraveneous line willb e inserted in your arm in the event your test requires additional medication or IV fluids.." Advice??

Thanks guys...I was satarting to doubt myself. He said this would be a 'big I told you so', in that it would not give him any new info...but you know in all the years I have been sick and in and out of hospitals...From the age of 6 years old....They have only done two orthostatic bp's on me. (when I was little this stuff was not taken seriously at all)....They did one when I was 11 and then my main doc did one on me a month ago ...My cardio has NEVER DONE ONE. He did an EKG and than talked to me... I was thinking I would do ithe tilt test alone...and somehow get from the hospital to a cab to a hotel...but I am so unstable after a bad faint that I think I may need someone. My cardio says that people tend to faint less after the test...but I dont beleive it...at least not for me...Once I go down that road, I go for a while... Problem is ithe hospital that does the test is two hours away from my house. I may ask my dad to come up...If my husband comes then there will be a 5 year old in toe...and that will definately be too much for me, i think. Yea, I fully expect to be puking my brains out... He seemed taken back that I was not worried about it after all his talking...but honestly...A faint in a hospital is like so much better than a faint, alone on a bathroom floor. So... p.s. that ache in my chest is now a dull ache and only really bothers me when I lay down or compress my chest for whatever reason. It is just to the left of center on my chest.... THere is a definate sore spot. If I push it, which I rarely do, it hurts like heck for a while afterwards. I personally think it is a cartilage issue?? but i dunno... I would like an answer though. If I lay down and then get into any number of position it pinches...

yup. me too. Whenever I have to stand for very long..you know like 20+ horrible minutes...My legs just ache.

I get the ice cold hands too. I have a sock filled w/ rice that I nuke for two minues. It is a nice thing for my hands. I also can move it down to my tummy...for some reason I like that.

Yea, I had one abnormal EEG when I was like 6 and then later had normal ones. I remember the blinking lights and that I felt really sick during that part but the test results all came back 'within normal limits'. ARGH.

Yep. I am always loosing touch with one body part or another...I think it is a standing joke at my house... "oh mommy lost her ____ again" (insert breast, butt, leg...you name it)

perhaps voted onto the island!! lol wow, depends on who it is.... If it is a client then I focus on how that energy makes me feel and purposefully radiate the opposite.. Like frustration, helplessness...then I try and radiate understanding and love basically if it is my husband, I can't. I am totally helpless...I just go under... My daughter and animals...same as clients basically...I try and radiate or send the opposite of what I feel off of them. I used to be able to get my daughter to sleep this way. lol If it is a stranger on the street?? I just walk away. Takes too much energy.

honestly? scare tactics...I dont think he really thought doing a tilt table test would be useful...He kept describing how I would pass out and how people would rather have open heart surgery than go thru a tilt table test... Like I have never fainted before??? I know exactly what to expect... i dunno

Do beta blockers do anything for overbreathing?? (the chronic abnormal breathing sort) Doc thinks beta blockers might help since zoloft and paxil made me so sick for the week I could bear them.

lol You guys are great! yea, we share all kinds of things here...so why not this?! (-;

So i was reminded of why I don't drive at night, yesterday evening. Everyone now a days has these SUV truck things where the headlights sit up so high...or they have the new cars with the super bright lights. Everytime I would get one of these things behind me the light from their headlights in my side mirror gave me an ice cream type headache. Yuck! So I would slow down to get them to go around. Most did, but one dude did not...He just slowed down too. Even when My husband drives the headlights still bug me. 1) I cant see anything when they come in batches toward me and 2) I get a monster headache from them. anyone else? p.s. Good discussion of photo stimulation on EEG's in this thread as well.