DancingLight

lois,

thank you so much for that tip on the spray. i will have to check in to that.

i also do know that i may need to pursue the DI thing further...but at this point the symptoms are tolerable with the ddavp, so i am working on other 'stuff' right now!

emily

michelle,

i didn't get an email notification to my inbox or junk mail box and i just have hotmail...so that is a little strange.

thanks so much for answering my question...

i can't help you out on your computer question!

emily

michigan jan!

sorry it took me so long to get back to you. i thought i could find the medical records but couldn't (i am in the process of collecting all of my records and getting them organized.) aaaarggghhhh....i have become my dad! he is the classic absent-minded professor who can never find anything in all of his piles!

anyway, i DID find the urology records, just not the endo records....

1. Yes, i have POTS....no questions on that. diagnosed via tilt and confirmed many times by different docs. my question...what counts as 'dilute urine.'? can you let me know. at one visit to the urologist my urine specific gravity was 1.003. does this help? i did 24-hour urine collections and had output of b/w 3750 cc and 4575 ccs over 3 different times. i had to pee all of the time! i was then referred for an endo eval. and had that water deprivation test. i was diagnosed with 'partial diabetes insipidus' and i think he suspected it to be the pituitary type. the problem here is that i am not sure how well the test was done or if he really knew what he was doing, so i am not sure how sound that diagnosis is. unfortunatly, the bladder stuff and peeing is sort of at the bottom of my health-priority list right now given a bunch of other stuff going on...so, i am sorry to be less than 'up' on this all. at one point i had this all memorized, but it is not coming to me right now! so, do you need more info. or is this enough to help you out with your survey/doctor? let me know. i know i have those records somewhere and can keep looking if you need them!

2. i don't think that i have mcs...but i don't use stuff that would aggravate that either.

3. i DO need teeny-tiny doses of meds. like, pediatric or smaller! but, after a while, i can usually tolerate the med...for example i would have done the same thing as you with the lexapro...but for me, i don't think that i would have had the same improvment as you did on less than a whole pill...but, i still take what are often considered not to be 'therapeutic' doses for the 'general population.'

i know you wanted short and sweet...but my case isn't very clear cut. as the docs say to me 'you are in the gray area on everything..." gotta love it!

oh, and, i now take DDAVP 2x per day... i take .1 mg in the morning and .1 at bedtime. i honestly could take more...every eight hours b/c once it wears off i am back to peeing all of the time. i tried taking it 3x a day but then my sodium went to low. i really do need to follow up with a better endo but i will have to find somewhere to travel for it. the DDAVP is a miracle drug for me in the sense of not having to pee constantly. still, i have to really watch my fluid intake or i still have to pee like crazy. the urologist htought my bladder was normal in function since i could hold 300-400 ccs at a time. but, he never investigated further. my POTS doc has suggested i look into that more...so i may do that next!

i hope this helps....could you please let us know as much as you can and find out from this! this is a topic that i am very interested in. this symptom drives me bonkers.

later alligator and happy thanksgiving.

emily

michelle,

okay, i'm a big computer dork...what are the newsletter notifications? do i sign up separately?

am posting this here in case i am not the only one...then you can just respond once and we computer dummies can get ourselves up to speed!!! thanks!

emily

yup...ditto, ditto, ditto to everything above!

hey, i met a dog the other day named ditto! so cute!

anyway, this, being thanksgiving and all is the perfect time to GUSH about this site and get to be all MUSHY! my favorite past time!

michelle, this board is a lifeline for me too...like katherine said.

you have created something so wonderful out of a yucky illness. i always wish i could find a way to make a difference in the world like that. i think that is the best thing we can do with this illness or any obstacle for that matter...turn it into something positive. somehow touch other people's lives. or make another life easier b/c of the path we have traveled.

i just watched an interview with elizabeth edwards today. and it made me so sad b/c i really admire her and it seems like she has a very hard road ahead. but, anyway, she talked about using this as an opportunity to educate women to get a mammogram (b/c she hadn't for four years). she said that if she stayed silent and didn't share her story, it would be a waste b/c she wouldn't have used her illness to make a difference.

she also spoke about the power of hope. she quoted my favorite emily dickinson poem...

so, thanks for making a difference, michelle and all of the rest of you who give tirelessly to this site. you ARE changing lives and educating people about dysautonomia.

also, you do such a good job keeping this site moderated and positive. we are very blessed to have such a community. most of us would maybe never meet another person with POTS...but now we can be in touch with people all over the world!

oh, that is another important point. an article in u.s. news and world report about getting the best medical care said that one of the most important things you can do is find a mentor and/or mentors who have your same illness. well, that is what this site definitely does! we don't just have one mentor...we have lots! yeah!

hope the upgrade goes well. i don't know the first thing about computer stuff like that.

a blessed thanksgiving to all...

emily

nina,

go ahead and vent...you can take a 'turn' we don't mind!

i had a pain-free day today and it was such a minor little miracle i couldn't believe what it did for my mood...so i empathize with the pain really beating you down after a while. i didn't realize how cranky it was making me. (i am not saying this to rub it in or something...quite the opposite.)

my mom has cervical stenosis and she is always in pain and i'm like, how come you never complain? how do you stand it!?

at least mri's are the least painful of tests out there! i'll take an mri any day over most other things! 'cause i'm a big wimp even on those u/s things! and that barium stuff you have to drink before a cat scan! eeek! sorry, whining.

well, i'd better not type too much...don't want to end that pain-free moment i am having!

i hope the mri does lead to some answers for you.

let us know. at least you got in quickly, unlike when you were having all the pelvic pain!

emily

Ernie! You came out from under the covers! You weren't supposed to do that!

Just teasing you!

Emily

amy,

welcome here!

i just wanted to say...your feelings of worry are sooo normal. i know we have all gone through that. and thinking we are going to die!

here's the thing...you haven't been dealing with these very long yet, so of course you are going to still feel very alarmed by your symptoms! it is easy for those of us who this is 'old hat' for to say take a deep breath and wait a little bit...

BUT, you WILL eventually learn what is POTS and what is not and be able to say 'oops, here it goes again!' just knowing i had POTS was so affirming b/c at least i knew why i was having the symptoms.

the symptoms are so bizarre and scary. i won't pretend that having chest pain or shortness of breath or a wacky HR aren't scary. but, i will say that you will really strart to be able to take things in stride eventually...

if you really continue to struggle with anxiety...maybe you could try some meds just to help yourself through.

just wanted you to know, you are not alone...and it is okay to be so scared. i know i was in the beginning.

also, i like the suggestions about asking your doctor things like...what HR is okay? what is not? what BP is okay? what is not? when is it an emergnecy and when should i wait it out. most of the time, unless there is something really new and different that you notice...the symptoms pass.

as for the beta-blocker...you will have to ask the dr. what he finds acceptable for your body. but 50-100 is considered normal. i, like you, had a normal hr of 90-100 and now often my HR is in the 60's...so, it did take some getting used to.

as for skipped beats...also a common complaint here on this board! a terrible feeling, but even normal people have this in a 24 hour period! have you had a holter monitor for 24 hours? as long as you have had a sufficient cardio work up to make sure the beats are not something else and your heart is healthy, you probably can really breathe a big sigh of relief and wait it out!

i hope this helps. i'm sorry you have to be with us here in the world of POTS, but i am glad that you found us...hopefully we can help you know what to worry about and what not to! and that we're all still here truckin' along with our goofy symptoms!

later alligator!

take care,

emily

paige.....

ditto, ditto, ditto!

i am really glad there are so many nurses on this board who gave such good information and were so firm about your need for medical attention!

when i read your post it really made me so scared for you, but i was one of the first people to responde...and i am not a nurse and have no experience with the symtpoms you are experiencing. i was afraid of sounding alarmist if i said something and didn't have the knowledge to back it up....so i am so glad others posted with such passion and concern for you.

i just wanted to echo that i was thinking about you and checking in...

emily

hey ernie! welcome home! i bet it feels good to be back in warmth and your own bed. ugh! the study sounds miserable. no food, no shower, cold...how do they expect someone to sleep?!

well, it is over at least! thank goodness for that. rest up...all day. snuggle under those covers and don't come out!

emily

julie,

how are you doing today?

i just wanted to chip in my two cents on the antibiotic thing...i know you were concerned about having taken an antibiotic for two weeks already and still showing stuff on the xray.

okay, i'm not a doctor...but, i know that when i used to have sinus infections (one every six weeks) i couldn't figure out why i kept getting them. it turned out that i needed to take a prolonged dose of antibiotics for several weeks...and it was also biaxin, like lailisa takes. anyway, what was happening was that i got rid of enough of the infection to think it was gone each time i took a round of meds, but it wasn't completely gone and kept coming back. finally after the longer dose time, i was much better.

so, what i am saying is that you have no idea how long that infection has been brewing in your system before you really started feeling badly. sometimes we need muhc more than the standard couple of weeks on antibiotics to clear things up. so, may be what is going on.

just wanted to let you know i was thinking about you. i know you were worried that infection would still be there....but i think that probably happens a lot. and remember, there's other junk going on with your body and your immunity may need a little extra help!

okay, enough for now!

emily

hey nina! yeah! i am glad that they are over! i am also glad you have such a good sense of humor about bodily functions!

as for the neuro appt...as you know...waiting is always part of the deal, but i always find that appts. get here faster than i think they will. it will be mid-december before we know it! eeek!

take good care of yourself and pamper yourself!

emily

one more recipe my mom suggested...she even had it all typed up on her comp! so i just had to cut and paste! yeah! this is good, esp. for those of you with kids and hearty appetites!

JOSEPHINE QUINN?S SLOPPY JOES

Heat 1 T. olive oil in large fry pan or electric skillet.

Cook 1 small chopped onion until wilted. Remove onions.

Lightly brown 2 lbs ground turkey or ground beef.

Return onions to skillet.

ADD:

? c. ketchup

2T. yellow mustard

2T. Worcestershire

2T. apple cider vinegar

1 t. salt

? t. pepper

1 c. water

Cover. Cook over low heat 30min to 1 hour.

Serve in sandwiches or over rice or macaroni.

did you have a crappy day? sorry, this thread has really gone to pot!

well, if you are reading this...it means your comps are OVER!!!! yeah!

emily

as promised, here it is....

BLUSHING BAKED SALMON

6-6-oz salmon fillets

3 T honey

3 T lime juice

2 T olive oil

salt and pepper

Marinate 30 minutes in fridge.

Bake at 450 degrees for 15 minutes.

That's it! and very yummy. we don't use the 6 oz fillets...usually we do 1 to 1 1/2 pounds, but if you have more people, you might want to do all 36 oz!

one note....this makes a very dirty pan! if you really are low on energy...you can use a disposable foil pan. i know it's not environmental, but sometimes we gotta do this stuff to make it.

an easy side....acorn squash. just halve them, and put some margarine or butter in the middle and some brown sugar. bake in oven. yum!

another easy one...what we are having tonight...

PORK TENDERLOIN WITH ORANGE MARMALADE

pork tenderloin

1/2 cup orange marmalade (or apricot preserves)

1 T lemon juice

1/4 t ginger

1/4 t dried mustard

Put tenderloin in roasting pan or pie plate.

Bake at 350 for 30-40 minutes.

Pour sauce over tenderloin. Bake 10-15 min. (until pink)

also, pots of soup are always good and hearty this time of year. i have a lot of recipes. but here is one....

LENTIL SOUP

1/4 c. olive oil

4 c. onion

1 c. carrots

1 t. thyme

1 t. marjoram

8-9 c. stock + water

2 c. lentils

1/4 c. parsley

2 cans tomatoes

1 large potato

1/2 c. sherry

saute onions and carrots in oil 5 min.

add herbs and saute 1 min.

add stock, lentils, parsley, tomatoes, salt, to taste and cook covered 45 min. or longer

add sherry

optional: serve over 3T chees per bowl. top with parsley

note: this recipe is doubled...

also, you can freeze this stuff.

okay, that's enough cooking stuff for now! if you like some of these recipes, let me know and i will post some more stuff.

also, a quick easy meal...tuna salad. love that. lots of protein. and you can put different stuff in it for variety.

all my meals are wheat-free, gluten-free, dairy-free, egg-free, etc. etc. for you other food sensitive folks!

later alligators! happy cooking!

emily

p.s. all recipe credit goes to my mom! she is the house chef!

katherine...

i agree! thanks for letting me know!

you are so great make these websites for us. i have so enjoyed seeing pics of everyone.

emily

julia,

i think that you are right to be skeptical...follow your gut!

as for leaky gut and adrenal fatigue...well, these are two diagnoses that 'alternative health' practitioners diagnose all the time as the 'cause' of all sorts of things.

i went to someone who diagnosed me with the same thing.

she wanted to put me on a ton of supplements too. one of them was a bovine adrenal hormone. it was just recently listed in consumer reports as one of the ten most dangerous supplements!

i went with my gut, and didn't continue with her or take the supplements.

i am not saying that leaky gut or adrenal fatigue don't exist...but i think that they are over-used diagnoses in the alternative field. sort of waste basket diagnoses.

and, supplements, just b/c they are 'natural'...well don't get me started on how dangerous they can be if you're not super careful.

sorry to sound a bit strong-minded about this, but too many people get 'taken' by people making a lot of money off of these supplements and promising miracle cures those of us the traditional medical world hasn't helped yet.

i DO believe in some alternative medicine approaches. but just like the traditiona medical field, you have to watch who you see. there are good eggs and bad eggs! $250 sounds like A LOT of money for a session. that is pretty insane!

anyway, gotta watch the 'toxin'thing, as toxins are a problem if your gut isn't working or whatever. but that is also used so much as a reason to take a bunch of supplements.

okay, rambling. just don't want your friend to get 'taken.'

hope you're feeling a bit better yourself!

later alligator!

emily

mindy...

wondering what is going on with the angels!? are you in a potshole and haven't been up to crafting them? that would be sad!

anyway, if you still want to sell them and put up a pic, just wanted you to know i was thinking about you and your project!

emily

michiganjan...

i am one of those dilute urine, ddavp folks...

but i gotta go dig up the medical records so i can give you better info...

so, i wanted to let you know that i will do that as soon as i can...but that i didn't forget about your post here...and this way you will at least know there is one more of us!

so, i will get back to you with more details...i'm a little slow sometimes to catch up on things...so if you need to nag me, i understand!

i would like to hear what all you find out in the end b/c i am very interested in this also...

emily

cfs...as pseudo-illness?? eeek! can i punch him? oops...sorry...

no really...

onto something more positive...very interesting....

actually on one one my appts. with dr. grubb...he gave his lecture to us that he gives his med students...and he talked about dysautonomia from years ago and mentioned those paintings of the "pale woman"

emily

okay, now i am really laughing...jaime topped it all off with her way of saying 'i didn't go poo.'!!! just got my funny bone!

well, nina, just wanted to wish you good luck on your comps!!!! anyone would be freaking out over them...let's just say i don't envy my friends who have gone through them! so, i won't offer to fill in for you...sorry! he-he.

that story was great...can you take me to wednesday? i love that! i love the things children say.

hope after all of the stress you are able to 'go poo' again! he-he. sorry.

okay, my favorite thing to do in college during exams....blow up balloons (maybe you should have a non-POTS person, i.e. teri, do this!)...then label them with the exam name and tape them up. for example....cognitive psych or physics and then, when you get back from the exam you get to take your pencil and POP the thing! it is soooo satisfying! i don't know why! so, i think you need to blow up more than one for 'comps' and then pop 'em when you get home!

also, i always, literally, forget to breathe when i am stressed! so...that was a good reminder on blackwolf's part!

BREATHE, BREATHE, BREATHE!

good luck!

i hear you on the brace thing...my neck is so flared, i have been voluntarily wearing a soft collar! what is up with that??!!

okay, just remember, you'll be past such a big hurdle when comps are over! what an accomplishment!

later alligator!

emily

hello and welcome!

just wanted to welcome you here! i meant to do it sooner! also, congrats on your upcoming wedding. i am glad that you found us...hopefull we will be able to add to your already supportive network...

i would definitely think the stress of wedding would make the POTS worse, as any stress does! (good stress or bad stress for me!)...

if you have to sit down during the ceremony, you sit down...no one will love you less!

i wish i had some other insights. it would be really great if you could get in for an appt. before the wedding...however messing wiht new meds right now might not be great either...hmmmm....i am not helping am i???

really, just wanted to say welcome here...

emily

YEAH CORINA!!!!!

i am so glad that you had a good vacation...

and, no stressing about catching up on posts! i get so behind, and have to tell myself that i can just start back up where i left off...there is no way i can go back and read all of the ones i missed!

but, i am glad you went back far enough to find this post to you about your trip! i was starting to get worried that you crashed after the trip!

the trip sounds like it was just what you needed. now, back to reality huh? especially with the power outage! yuck! our power goes our for five minutes and i realize that i am completely dependent on everything electric. it is a bit scary! how can i heat up my slippers without the microwave???

welcome back!

emily

paige,

that IS definitely scary. i don't know how you wouldn't be concerned.

is there another doctor in the practice to see? it seems to me that you need to be seen.

i don't have any insight for you...sorry...i can't believe your bp was so low and they acted like it was nothing?! it just blows my mind.

please keep checking in with us and let us know how you are doing. i just wanted to let you know i am sending good thoughts your way...

i wish i had more insight...

emily

p.s. my grandma swore by prune juice....it DOES work, but has a lot of sugar in it. it literally works as a laxative...especially if you can tolerate it warm. works faster than prunes not in juice form.

aaaahhhhh...wasn't it nice to talk about all of this!