Wufflebear

3pm Sunday would work for me. I have an appointment in NW Portland at 1pm but I think it will be done by 2 or 2:30. I have to drive home (4 hours) Sunday too, so I might not be able to stay much more than an hour.

1pm Saturday would also work for me.

Where in Providence Medical center will we meet?

Michelle,

I could help find new links, if you still need someone for that...

-Heather

Sure. My theory is that our brains, being deprived of oxygen have neurons firing like mad for the time we are out, and since we don't dream in real time...it is possible to have quite a little adventure while unconscious.

I think it is interesting cause as a little kid I would say that everything got dark, and I felt really bad and then I would wake up. I think that subconsciously I thought to use the 'wake up' language because I had the little dream or thought firing, that I had been asleep and the doctors consequently called it hypersomnolence and studied me for narcolepsy etc. etc. etc.

OHHH I am so there!!! I am coming up to portland with my daughter the weekend of APril 29/30. Other than a meeting with someone on sunday in the afternoon I am totally available!

I usually have a little dream or thought stream when I faint, which I never really paid much attention to until I had my tilt test and I guess was more aware of things that were going on with me during the faint... So I Wondered if anyone else did this too. If you remember your dreams during your faints and want to post them, go for it.

I usually dream that there is several consternated people around me...lots of talking and debating and general consternation... I rarely remember anything but that feeling of what the dream was about.

I usually never remember it....But it usually involves consternation of some sort, people trying to figure something out, lots of talking etc, that sort of theme..... But this time I know my husband was there and everyone was talking and debating and trying to figure something out... there were these bumps on my shoulder going down toward the front and then someone said "i've never known a spider to do that before." Then more talking and stuff, then I woke up.

I suppose it is just all the nurons firing cause of the depleted blood flow to the brain, but it is kind of different.... lol

I agree with the dangling legs. Just sitting in a chair at work with my feet down, even if they are resting on a short foot stoolish thing is bad for me. My HR just goes up and up and yuck.

I think from my description and that I know I have lost time before between when all went dark and when it got light and I could see the time again... But I was not positive. That and I have bit thru my tongue, ended up w/ bumps and bruises etc and not known how I got them. I was pretty sure I had gone out but not positive... I usually have a little dream like thing while I am out so when I was a kid they just told me it was narcolepsy but then they could not get any tests to cooperate w/ their theory on that one.

I wonder if anyone else has a little dream when out???

The cardiologist in 2003 gave me the dx of vasovagal syncope upon my description of my symptoms only... That is why I pushed for the tilt to be positive cause when I check the books by dr. grub for NCS it just does not seem to be quite right for me, or at least it does not explain it all...

I have never really noticed them turning too colerful. Although They do swell up a bit, but I have never measured it..

Mostly my legs feel stiff and full and hurt when they are pooling... I notice it too once in a while in my hands. My abdomen just feels full and stressed when it is pooling there.

So Thursday I had a Echo and a Tilt test. The echo made my chest hurt but I think that was just the funny position I was in, that front part of my chest does not like to be squished.

The tilt had been canceled the day before but then they were able to reschedule it for later in the day (I had my step mom flying in and hotels and everything...) The cardiologist ended up doing the test himself.

Upon tilt my HR went up 20+ beats per minute then settled down a bit. Over the next 15 minutes (I was of course feeling good that day) the symptoms kicked in...foggy, aches and pains, headache, legs feeling heavy and achy, dizzy, spacey. I swear if my hr hits 100 I just go foggy/out of it. Anyway after 15 minute s of slowly increasing heart rate and increasing symptoms...to the running hot/cold level the doc asked me if I thought it was going to happen soon. No, eventually it will but it would take some more time today.... So he told the nurse to give me a nitro tablet (to speed it up)...Upon the mention of that my HR went up another 20 to 120bpm, and then I got the tablet. In 2 minutes I was at 157 and then the heart rate crashed down to below 60. (the measurements were taken every 20 seconds or so and it was 60 at both and I went out between them...

Anyway, I did pass out...apparently talked about my symptoms till the end. I was never sure that I had actually been out before as I always get a few minutes warning and manage to hide...usually...The other times in public I would sit down, put my head down between my knees and sit on my hands. People would move away and stare but nothing else. Anyway, While I was out I had a little dream...I always do...Isnt that odd?? and kind of funny, too.... So they say I passed out and so that tells me I have passed out a zillion times for sure, then...

Anyway, When I was coming to the doc asked for something and the nurse said 187/40...I am not positive but I guess that was either the O2/pulse meter thing I was wearing or the bp..... I heard the doc say something about "get that bottom number up." I was still coming around though, so....

I have been fairly unstable since but only had one close call with going down...(coming back from an absolutely amazing lamb dinner at the hotel...so it was worth it (insert scrumptious eye roll here...lol) I still feel like I am in a daze but that is normal...Still have the headache too....which is also normal for me.

Anyway, doc still thinks a beta blocker would be good...perhaps it can keep my hr from jumping up so high (to over 100 when I stand) and then higher if I am really unlucky. He said it could also help with the migraines. He did not say whether this changes my diagnosis from vasovagal syncope but I think it could...

My bp was pretty stable, per what the doc said, untill the HR crashed and I passed out. (BTW I did get the shakes that look seizure like, but aren't.)

Thoughts??

Anyway, it is done...and after 30 years I have my black hole documented... It did not seem as deep or endless when I passed out during the tilt...Maybe it just was not as bad as I normally have or maybe knowing there was a cardiologist and a nurse right there made the psychological difference for me. who knows....

It seems to me that a lot of my symptoms kick in when my HR climbs up near 100. So I guess my goal is to keep it down unless my body has a good reason for a HR climb.... Excersize is a good reason, sitting up is not. lol

I have been sick with ans problems since 3. I was told I had CFS at 17 and the ANS problems were not diagnosed till I was 31. I get the swollen glands and sore throat stuff too.... I dont think that fits into the ANS dysfuntion dx's but who knows....

where do you get his books?

Ok so now that I am at 48 days with no end in sight I was surfing and found the article I copied / pasted below... interesting...

From: http://www.womentowomen.com/menstruation/i...ularperiods.asp

"Why does being stressed cause irregular periods?

When we are stressed, regardless of the source (danger, personal relationships, work, environment) our adrenal glands are designed to secrete the hormone cortisol (see our article on adrenal fatigue). Cortisol has a direct impact on the sex hormones estrogen, progesterone, and DHEA. Eating disorders, dieting, drug use, and reliance on stimulants like caffeine and alcohol are also interpreted by the body as kinds of stress. Poor nutrition seems to physically change the proteins in the brain so they can no longer send the proper signals for normal ovulation. "

I too hear you. It is, wow what is the word... horrible to feel that people doubt you or worse when you feel bad. It is horrid when we are trying SO hard to do our best, konwing that it is not up to other peoplse normal, to be looked down upon.

And how do you explain that you cant remember things like others, see like others, just stand and cook like others etc. etc.

I got it last night because my husband wanted to get rid of some of my daughters old toys she does not play with.. I said well pick them out and then I will go thru them to see if I agree. He said... 'cant you just tell me what things in her room you want to keep?'. No I can't..... I will forget something. He does not get that. He gets it when I am pale and shaking and trying to get down.... That he gets... But of course that is a bit obvious... It is the 'smaller' stuff that people dont get.

I have finally just reverted to saying "I am doing my best, I know it is not always good enough, but I am trying, trust me."

So I hear you..... It is hard I know....

Well I have put up posts here lately about burning eyes and my period that just wont start (on day 48 now). I saw my pcp and an eye doc tuesday and this is what I found out.....I think I want a refund..

My pcp (at day 45 of my cycle) (btw I normally run 33-34 days...once in the last four years I have gone to 40 days.) took my temperature and did a urine test for a bladder infection and said "well your urine is good, I just don't know what to tell you. Perhaps one ovary is not working anymore? Or perpaps you are going into menopause, but at 33 that seems a little young for it."

So Then I had my eye appointment. Good news is that my prescription has not changed in the last 6 years. Bad news is that I have NO depth perception. She also agreed with what I had told her (I read somewhere...probably on these boards that eye focusing is at least partially under autonomic control). She agreed and said that yes some of your eyes focusing abilities is indeed under sympathetic control. She did some tests and said that my brain was completely ignoring one eye at a time. It was only accepting input from one eye, although what eye it picked seemed to vary I think. It is not apparently obvious to a normal observer but it is happening. She asked me if I had ever been told I had a lazy eye. My mother thought I did but no docs ever caught it. They had me wear a patch to pacify my mother but it made me feel terribly nauseous and gave me headaches. (I think I was like 11 when they did the patch stuff). Anyway the doc tuesday said that she could not see any reason for why my eyes were doing this, as the exam was otherwise perfectly normal...story of my life...

I told her about my burning eye issues and she said she did not know what it was... I asked if there was any medicine or drops that could bring relief.... That was suggested by someone on this board...sorry I dont remember the name. I will look it up. My doc handed me a sample of some drops and said I could try them, but she had no idea what was really going on.

I also told her that sometimes my right eye gets this fuzzy spot, quite large, in the center of the field of vision...It is like trying to look thru a glaze or something... The shape is always nearly the same and it goes away after several seconds. She did not know what that was either...but she suggested optical migraines...but those distortions of vision usually last longer...

So I am out $40.00 in co-pays and left thinking I could have gotten myself a nice present with that money....

P.s. My daughter turned 5 yesterday!!!! I stayed home from work and made myself be normal....PAYING FOR IT AS WE SPEAK. But it was worth it.

So I am at day 45 and I feel appropriately cruddy. I had some dark brown spotting around day 29...but then nothing. I took a pregnancy test and it is negative and I keep getting these pinchy pains in my lower abdomen, running super hot and then chills, feeling faint (but that is kind of normal for me lol) along with cramping. The cramping does not surprise me.

I went to the doc cause although I run long (33-34 days) I have never run nearly this long in the four years I have tracked it...

they did a urine sample cause they thought I might have a bladder infection...whatever. They took my temperature and it was 98.6...ie: lowgrade fever but they could not be convinsed of this..

Anyway bladder infection test was negative except that I had some white blood cells in my urine.

Other than that I got the 'well I just dont know what to tell ya'

Has anyone else had their dysautonomia mess with their cycles??

I am just frustrated. Maybe this is my new weirdness?

Yes my nose and the sides of my face get a stiffish/numbish weird feeling when I stand up sometimes/most of the time some days. I also get it when I ride my little excersize bike. It only started a few months ago and I don't like it...but no doc will take me seriously. I get the "well, I dont konw what to tell you on that." comment. I was also told by a cardio that It was caused by hyperventilation....but he had me do a purposeful hyperventilation...and although that gave me that overoxygenated, woozy feeling it did not cause my face to go numb.

I also pool in my abdomen. I actually swear I saw my stomach inflate once when I stood up.

I get it too. For a while it was realy bad so I found a doc that would give me antibiotics and I only take them when it starts up, just one antibiotic and one of those purple pills that is supposed to relax things down there. That helps. I assume it is related to being dysautonomic.

I have never used them.

I hope you start feeling better VERY soon!!!!

Yep. lol . that is my daughter laying on my legs... She should have known better, huh!!!

Sorry I could not resist...lol

I have been sick all my life too, but I think although it has been ENORMOUSLY hard at times, it has kept me from being somone with mixed up priorities.

I mean, I have had to keep very clear priorities in life and I am very clear on which things I will sacrifice or not sacrifice.

Co workers have been shocked sometimes at how I will blatently walk out of work.... But if it is that or my health, or that or my baby girl? there is no question. I figure as long as I am doing the right thing in the 'big picture' arena....then it will work itself out.

I hear others talk about how they envy people from other cultures (latest one was people in nepal and tibet), on how they have such family oriented lives....such clear priorities.... Such "simplicity"....so 'intune with themselves'. I always get a chuckle from their comments.... This person spends enormous amounts of money on retreats and is about to sequester himself away from everyone for three years in order to attain this simplicity mentioned above. I have no need for this....I came to it a bit more naturally, you could say. Aparently my life long illness gives me more in common with dirt poor people in tibet than with the people I live my life around.

I live a very slow mellow life. If I want drama I will watch a soap opera. lol

So I perpetually have a runny nose, especially if I am standing! weird..... And every few weeks it feels like I am coming down with something (glands will swell up, aches and pains, throat can get sore, mild fever etc).....but then no one in my family catches it (and they catch everything that goes by. Sometimes one hour will be horiible and then I will feel rite as rain, and then I will feel sick again...very weird.

I was reading this at the vanderbilt website and wondered about it. http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4792

I wondered mostly because they mention the nasal stuffiness...

anyone else??

I live at sea level on the Oregon Coast and I definately get headaches when I change altitudes. Say Oregon Coast to Kansas City or something like that. We sometimes go to Central oregon which is high desert and a couple thousand feet and I am tired and spacey and headachy there and my face is perpetualy red too. I have to slam gateraid. If I go to timerline (7000 feet) and stay non mobile I will be ok...but again lots of fluids. We went camping once and crossed a pass that was over 8000 feet and I was barely conscious. My husband kept talking to me, to keep me awake, and all i could manage to say was 'get me down'. It was awful.

But everyone is different. Staying hydrated and listening to your body are the tricks to live by.