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Does your dysautonomia constantly change?


DSM3KIDZ
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I was wondering if dysautonomia changes systems? What I mean is when I'm nauseated I never have headaches/migraines, than when the nausea subsides I immediately get headaches or migraines. I continue getting chronic headaches or migraines until the nausea comes back and than my headaches/migraines go away. This is how it's been for 2 or 3 months straight. I just starting having headaches and migraines 3 months ago so when my tum was good, I was good. Now I don't seem to ever have a day without either nausea or headaches. Somedays it even switches by the hours. It really makes me feel like a hypocondriac (however spelled) because I'll tell my husband I'm sick to my stomach than few hours later I tell him my stomach is fine but now my head hurts and it's been a cycle of complaints.

Do you ladies experience this? It's very fustrating. Any clues? Is this a sign this are getting worse since I don't have many normal days unless I am on nausea meds or migraine meds?

Thanks Again

Dayna

P.S. I checked out dynakids today. I was crying, those sweet kids seem to be coping better than me. They are so strong and I was really touched by their stories. I can't imagine being a kid with the thought of an unknown future. They are my new inspiration. I think I'm going to register there since it says to age 29. I'm 28 and no longer a kid but like I said they inspire me just like you cool chic's do. Thank You.

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I have the same problem that you do. My symptoms change all the time. I get headaches and then a stomach fit and then I get dizzy. I don't know how to help you on this one. I know I get so sick when I go from one temp to another. I go outside to the 90 degree weather then I come in to the air and then I get very sick. Or I go from a shopping store to the outside to my car and have to sit there for a while before I can drive. It sometimes doesn't work to sit though because there is always some guy or gal wanting your parking spot. So I drive to a place I know I can relax for a while.

I hope this helps. IF not at least you don't feel alone.

Shelby

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Life is like a box of chocolates, you never know what you're going to get :D

I never know what a day is going to hold instore for me. It drives me crazy when someone asks me how I'm doing and one minute I can say fine and the next I say I feel really ill, usually they don't understand so better left unsaid :) There are symptoms that I don't have for 6-12 months and then boom there they are again. Or I love when we get new symptoms that we've never experienced. Anyway it's best if you learn to expect the unexpected.

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dayna,

yup...they change all of the time. moment to moment sometimes...not exactly MY idea of a box of chocoloates! :D ha! that was funny though steph!

it can make me feel like i am nuts...i hear you...

i am 29 and i read the thing on dynakids thing too about being 29 and i thought, hey can i still join before i turn 30????? you know, they make you feel young saying we are still young adults. he-he. no, i know i am still young.

okay, later allgator. i am making NO sense today...it's that extra bit of doxepin i took last night...

emily

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you all crack me up!

things definitely change up and around for me on a regular basis. i don't think i flip back & forth between distinct body systems to quite the degree, but overall things are never constant. for me when one thing is worse something else will often follow, but in the recent past there's always at least something that decides to be wacked out. i do seem to have a complete on & off relationship going on between my food intake & my ulcerative colitis; i know that's not in the autonomic category, but the UC was grandly calm when my motility was so bad that i could hardly eat...now that i'm munching away it's not quite as happy. and yes, the moment i think i have some understanding of what might be going on with my crazy body, it never fails that something else fun comes along. wouldn't want me to get complacent or anything:-)

regarding whether it means things are "getting worse" it could be a yes or a no. it may mean they're worse for a day or a week or a month but perhaps they'll be better a day or a month down the road. there are more uncertainties than anything with all this, including prognosis. my mom & i had some discussions about this with the folks at vanderbilt since my symptoms have accelerated greatly this past year, particularly in terms of involving other body systems, and there's no definitive answer. the popular verdict was that my symptom progression over the years does seem to have a progressive nature. and yet no one really knows. and even if it is progressive there's no way of knowing whether that means i'll be "stagnant" for 10 years and then have another rapidly progressive number of months, whether there will be a 20 year "break" or whether there will be a 2 month "break" of sorts. and of course there's the chance that i'll be 100% healthy and able to stand for hours this time next year. not likely, but not impossible.

so....all that is to say that there's no way to know about the direction of things. i think it's worth some thought &/or discussion, but not so much as to get caught up in it. it's frustrating for sure, but unfortunately the answers just aren't there to be had yet. maybe someday...

:-)melissa

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I was too concise with my previous entry here...

I've got symptoms in every possible autonomic realm. If it's got a stretch receptor, it's gone out of whack on me. Full GI system issues, end to end (nausea, GERD, hiatal hernia, edema, IBS, gastroparesis, erosions, gastritis, and on and on...), Respiratory problems, Blood Pressure, Heart Rate, Migraines,

and then there are all the medication allergies, repeated sinus infections/surgeries, and the bone and joint pain from EDS. I'm probably missing a few things, but this is the Reader's Digest version. You name it and at some point I've had a problem with it...unless you happen to name "prostate" or some other item that didn't come with my standard equipment :D

Nina

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Regarding literal switching of symptoms from one to another--yes, I remember experiencing this with headache and dizziness--I would feel one or the other, sometimes within an hour it would switch from one to the other, but rarely both at once. It was just one of the many many strange phenomena of dysautonomia that was never explained to me (and that I never tried to get an answer to). I don't think this is a sign you are getting worse.

Hopefully you are going to get more functional over time as you find treatments that work.

Katherine

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i forgot my DYNA p.s. when i posted above. DYNA is great & i was actually a member until i missed a mandatory renewal when i was at vanderbilt. i then decided not to re-register b/c i felt like i'd pretty much outgrown the group. i'm not at all discouraging anyone from joining but just wanted to let you know that even though the age says 29 it's largely a much younger group and more kid and teen focused. it's a great organization though & i wish it had been up & running when i was first diagnosed. regardless of whether you join or not though there's a lot of good stuff on the site to peruse. you might even find some old poetry of mine if you look hard enough:-)

:-)melissa

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Regarding headache and nausea--sometimes nausea is associated with migraine headaches.

My symptoms certainly do wax and wane and flare up really bad. Fatigue and stress can trigger a downturn. A cold or sinus infection can set me up for a dive, etc.

I would guess that we all have symptoms that are never constant in terms of their exietence and severity.

Right now I am going through an insomnia period!

Good night, y'all.

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