Wufflebear

yea, I get them too. Sometimes worse and sometimes mild. When it gets real bad with that I too end up in the fetal postition. Not fun.

I managed to get up one night and dump all my laundry on my bed...getting to the blanket closet was too far... and climbed under it all. I was still cold.

It is like the cold comes from within.

I have tried one mouthwash that was a mixture of a few things...thinking it was milk of magnesia and other stuff?! And the dentist gave me a kill all mouthwash too. Niether do anything noticible for me.

Lot of tylenol is ok for getting me thru a day at work but then my tummy pays.

My dad gets them once in a while, so I always thought it was just hereditary...but I get them WAY worse.

hokeykid- I will try the acidophilis...Thanks for the tip!

yea, mine can be big too and I have had them down my throat and on my tongue. I usually am feeling bad by the time I get them and then I feel even worse.

My dentist even pulled a tooth at one point thinking that perhaps it was rubbing and causing the sores.....but nope, still got 'em.

I will definately bring it up. Thank you!

I also just found this http://anapsid.org/cnd/files/mastersymptomlist.pdf

I go thru bouts, particularly if I am having trouble with swollen glands, of getting canker sores. usually they will come in tandem with either a UTI or hemmeroids...fun topic eh? For a long time they have come for two weeks then will be gone for a week tops, then return. A few months ago I switched to the Biotene toothpaste and it has helped cut down on them, but man these are yucky.

Anyway, one time I had 13 canker sores at the same time....YUCK

Anyone else get flare ups of these? I think they are related/triggerd by my autonomic problems.

I have not had a problem w/ foam toppers but mine is just a generic one from walmart. I DO however have problems in rental cars....That rental car smell....I always feel sick in them.

I used to sleep on an inflatable mattress and that is horrid in hot climates. I put a blanket under the sheet and it helped.

I usually run high 96's to low 97's. I have gone in with my dysautonomic fake flu/swollen glands/nausea before and it seems like it usually reads normal (98.6) then.

Hey Lauren,

I am so sorry. I wish I could give you something to help! I keep trying to think of what has helped me but I have been sick since I was little (some times worse than others) so Its not like I had a life 'before' dysautonomia...

I know I have learned to turn my brain off...At one point I even got some lincon logs off the internet and whenever I started stressing over what I could not do, how I was not cut out for life here...etc.etc. I would play with the toy. It is kind of silly, but it worked.

I also adopted a love of self and a general attitude that I am right, what I feel is correct and whatever anyone says about it is inherintly flawd. (harsh, but it can be useful.)

As for friends...I know....

So many docs give out psychiatric diagnosis when they just dont know what it is...Keep searching. Remember you know your body better than they do. If you think it is POTS it could very well be, despite what the doc says.

Oh yea, I know exactly...I have it too.

I too have had autonomic problems since I was very little (like 3 or 4 years old.) It is VERY hard. I was bedridden from age 16-18! I wondered if I would ever find a husband and have children and have a job and feel worthwile...

I did. I pushed myself. I decided that since this is chronic (btw I did not have a diagnosis till I was 31) obviously and I was going to win. I have to give myself lots of slack sometimes. I have to be easy on myself. Ie: I am not a work a-holic, but then that is ok with me.

I now have a husband and a little girl and live in a house overlooking the ocean on the oregon coast (I always dreamed of that) and I have a job that is programming/teaching etc , which I also always wanted.

It is still hard and I still have it, but it will be ok.

Get more help if you feel you need it ok? And just know that IT WILL BE OK!!!

Cardiologist

Family Doc

Went to way too many docs as a kid...I am allergic now.(-;

40 weeks w/ c-section

This is fun!

My name is Heather Michel and I live on the southern oregon Coast, near North Bend, Oregon. I am 33 years old and started having problems (fainting, massive headaches etc.) at age 4 or 5. I was sick a lot as a kid (hospitalized at 9,11,17) but no one knew what it was so they called it a variety of things (migraines, hypoglycemia, IBS, Chronic Fatigue, Fibromyalgia etc...etc...and put me on lots of meds that never really helped and sometimes made me sicker. Anyway, I finally got thru highschool and then in college I studied abroad in Spain for a term. Ended up getting my B.S. in Biology and Spanish. Then I worked as a researcher at Wolf Park in Indiana for a summer before coming out to Oregon from Kansas City, Mo.

I have worked a variety of jobs...some more succesfully than others....lol

Now I live in a house that is up on a bluff and overlooks the ocean. (actually the ocean is about 4 miles away but since we are up so high we can see it.) I have a husband and an almost 5 year old little girl and 5 cats (linus, kyla, pippin, meriwhether and ziggy). I work now for a software company in a tiny town north of where I live and do internet training, translation (spanish-english) and call center type support for them. (radio station software - schedules the commercials, music etc that you hear on the air..plus bookkeeping software etc.)

What else... I love to knit when my eyes and body will let me...I like to sew too, but I am not very good at it. (not that that stops me, as my daughter can attest to!)

in 2002 I finally got a diagnosis of "vagal syndrome" and I go back this march for more info / testing... Since my daughter was born in 2001 I just feel like I am progressivly nose diving. Such a long journey!!

I am very glad I found this place! It is great on good days and bad! (it is also good for running me over my breaks at work!! oops.)

I can relate. My husband says I eat too much salt and should not drink so much water...how is that for ignorant! And I have given him info, talked to him about it. We have been together for 10 years. I have finally resorted to just outright saying "do you realize that you have no idea what you are talking about?" That usually makes him be quiet...that I can deal with. lol

I am no help....But you are not alone. (-:

This thought has occurred to me to. I have no idea how to tell one from the other...

Welcome and I am sorry this has happened to you. There are some great sites out there. The link above is a good one.

also:

http://home.att.net/~potsweb/POTS.html

http://www.dynakids.org/index.jsp (for the under 25 crowd)

Be easy on yourself and listen to your body.

I know the feeling!! ((Big hug))

My family doc put me on paxil 20mg as of today and I had had such a nice morning too. now I just want to be sick. I feel terrible..

I hope it gets easier for you.

I too have run into this and find it truely amazing what employers are capable of. I too think they may be looking for a reason to fire you. They will come up with something totally legal I am sure in the wording of that though. They are good at finding excuses that work in their favor even if they are lies.

The trouble with business is that they are all about money now, now, now. They forget that by being kind and gentle with an employee who needs it they can create a loyalty that will serve them so much better.

I got very moody on the pill.

My tummy kind of pokes out. Sometimes when I stand for more than about a minute I can see it poke out more, I think. Anyone else have this? Is it related to Splandic bed?? (sp)

I Have done bouts of trying to flatten my tummy and give it more muscles but nothing seems to help...short of a girdle.

I get more comments from family on this and how I hunch over when sitting or standing than on anything else..

I did loans to the tune of $40 grand....

But if you do that then you are kind of locked into working even when you feel terrible in order to pay them off...

I work in basically a call center full time. So clients call in w/ software questions and I try and solve them. Plus I make recorded internet training sessions and do live internet training sessions.

The training sessions are fine for me cause I can do the recorded ones at my own pace and the live ones, I know I just have to be 'on' for an hour or less...and then I can decompress.

The call portion of it is very hard when I am having a mediocre day and darn near impossible when having a bad day. I can't remember what the questions are...I get confused.... People think I am upset with them when really I am not...

I have asked to work from home but it is not allowed. I have asked for reduced hours but that goes no where as well.

I do the best I can, but frankely some days I just keep the chair warm.

For those that work...

My typical coping mechanizm for work is to work one place for about 2-3 years and when they start to realize that I am not going to work long days, be super productive all the time, have consistant quality of work, etc...So, I quit and take a month off. Then go to another job.

Now I live in a small town and this is not an option...The only way to get a new job around here, that is not at mc donalds or 7-11, is to watch the obituaries...

So I am in new territory. I think for every week or two that I am feeling normal and productive I have a month or more where I really feel like I just keep the chair warm. I can't even begin to be as productive as my co-workers...even though I try to find stuff I can do on my bad days, that will keep me busy...it frequently is not what my co-workers/boss want me to be doing... (I work in basically a call center (clients call in with software problems and I am supposed to fix it, with some project work on the side).

What do you do, at work, to cope? What modifications do you make? What works with co-workers, so they aren't dong the snoopy/tale bearing thing? etc. All ideas are appreciated as always!