DancingLight

karen,

i take both effexor xr (75 mg) and clonidine (.1 mg at bedtime).

these have both been very good meds for me.

i just started the clonidine recently and have had really good luck with reducing "fight or flight" symptoms as well as GI symptoms. i took 1/2 tablet for a week before increasing to the full dose. at first it absolutely wiped me out. made me very lightheade and overwhelmingly exhausted. but after that...it really helped. if the side effects are tolerable, your daughter can wait it out, if not...stop it.

as for effexor. i have taken it for a long time...probably a few years now! i have tried a lot of other anti-depressants and always came back to the effexor. it was the least fatiguing for me and the best for anxiety/depression. i started the first time around pouring half of a 37.5 mg tablet into juice! so, i had to work up very slowly on that one too. and also, on that one i felt worse before i felt better and had a lot of dizziness at first. make sure it is effexor xr rather than just effexor. i know there are others who like effexor also. are you on ndrf.org also? there have been a few discussions on it there if you want more perspectives.

did the doctor want her to start one first or both at the same time? i would be concerned about starting both at the same time! as they both can cause symptoms to get worse at first!

i have been one of those folks who has had a lot of bad expriences with meds and not responded to most medications that i have taken or had terrible experiences! so, the fact that these two drugs both work for me is a minor miracle! so i thought i would share my experience!

i hope your daughter starts to find some relief soon...

i am glad too that you had a good appt. with the doctor in ohio and got a lot of attention and insight. do share more if you don't mind!

hope this helps...didn't mean to get so "advicey"...trying to be short and sweet b/c i am so pooped, but wanted to reply to your question....let us know how your daughter does with these meds if she tries them.

oh, and that was a good suggestion about watching for suicidal thoughts with these drugs. your daughter is 20 right? is that still considered adolescent? i don't know...but it is always good to be careful with all of these meds.

okay, rambling now.

later alligator!

emily

mary,

just wanted to welcome you to the board!

i don't have any scoop on the tumor thing. but what do you mean you are a tumor grower? that doesn't sound too good!

i am glad that you have found a good cardiologist and one who is educated in POTS.

i also thing it is so wonderful that you found this board so early on in your diagnosis! hopefully we can help you every step of the way...and even if we don't have answers we have lots of support to give!

i know i would have been sooo much better off and better informed if i would have found this board sooner!

so, while it is not exciting to have POTS... ...i am glad you found us right away and know what is going on with your body...

hopefully you can do what merrill suggested with the urine test. i did that way early on too...all was negative. but, it is good to rule out other possible causes of the POTS...and i always think we should go with out gut on things!

welcome!

emily

well, hallmark isn't making any money off of us here...he-he...since we are doing this all online!

thanks for posting that sue...

this site is such a positive source of support...yeah to those who make it happen!

and happy sweetest day to you all...

okay, well that wasn't exactly profound, but you get the heart of it!

emily

Nina,

thank you! i was hoping you would respond.

no, i haven't had a hida scan. i was definitely wondering if i should ask about that though.

i have one other question for you...with the pain...was your pain localized???? or was it all over the abdomen?

thanks bunches! sorry you have to be the "expert" on this through your own experiences...

goodnight!

emily

hello all!

to those of you following my saga...

the ultrasound of my gallbladder was "inconclusive" but showed a small polyp...

they wanted to do a CT scan to further investigate the situation...

from the nurse on friday afternoon my mom didn't get much info (i was napping...and missed the call...bummer!)...

this time she said that they found a small renal cyst. she said this doesn't mean anything and doesn't explain my pain.

i love that they keep finding a bump on a different organ each time...

anyway...

i REALLY NEED TIPS from those of you with GI pain.

a lot of you talk about pain...and i am wondering if what i have experienced sounds familiar to any of you. (if this has already been discussed in a previous post...please direct me there. thanks!)

i have had two "attacks" in the past 3 weeks. i still don't feel quite "right" and am even more wiped, muscle fatigue, stomach feels "weird" and some nausea.

both attacks were amost identical so that seems to rule out a fluke incident or reaction to food.

here's what they were like:

i woke up in the middle of the night from a sound sleep (around 3 or 4 am) with severe pain, nausea and these really gross burps (sorry...but details matter!).

both times i went to the bathroom several times with such severe cramping and pain i felt like i was going to pass out (i don't faint...so luckily that didn't happen).

the things that are really different are the fact that i wake up in the middle of the night, the burps and nausea and the fact that the pain DOES NOT SUBSIDE. it persists for hours and hours and i am doubled over.

this second time i also ended up vomiting even after taking the zofran and percocet like i had received in the ER the week before.

this is different from any pain i have ever had. the middle of the night stuff. the nausea and burps. and the lasting severity of the pain.

i am used to IBS type pain when going to the bathroom or right before, but not for hours and hours.

does anyone have ANY IDEAS OR TIPS????

i am trying not to stress about this, but i am fearful of another attack in the middle of the night and i don't know what to do when it happens.

at the ER they just told me that my bowels were trying to pass something. for 15 hours???

to those of you with GI pain...have you had this sort of experience?

should i keep investigating this further or let it go? at this point i do not know the next step. should i at least schedule a visit as soon as i can with my GP who has done the test so far?

i don't want to make a mountain out of a mole hill...or cry wolf if this isn't a big deal. but i also don't want to ignore another problem.

does this sound like POTS or something else? any ideas?

i am really lost on this and would be grateful to any insight, links to good sites, etc!!!

thank you!

i'm sorry i havne't been up on posting lately...i've been so wiped by this! so, i feel bad asking for stuff!

later alligators!

emily

p.s. i don't know why i can't ever pick the right icon! i meant to pick that green guy! oops!

congrats jess!

wow!

i was just thinking about you this morning b/c you hadn't been posting as much the past couple of days...so i said hmmm...i hope she is "good" busy and that is why she doesn't have time to post rather than the other alternative of feeling too crummy to post...

well, now we know!

sooo...CONGRATULATIONS!

i know you are having such a mix of emotions right now...i cannot even imagine. i am sending you hugs and good thoughts and prayers for an healthy pregnancy!

later alligator!

emily

p.s. don't know about the meds! except i would think stopping too quickly would be too much for the body.

geneva!

i am so glad that you posted about your gi visit.

i would not be looking forward to all of those tests either....BUT, amazing attention to your dysautonomia by the doc. that is great. i hope the anestesia team is just as attentive.

i saw a gi guy who would not take me seriously at all and said he wasn't going to "lose sleep over the testing" on me and he hoped i "didn't either." well, i decided not to do that! the prep would have been enough to wipe me out.

so, that is the short of it. it is just so encouraging that he is watching you so closely (as he should) and validating you (again, as he should!).

i, like you, would probably just want to get the tests over with...but if there is no hurry...i guess it might be nice to wait until after the holidays...

depends if the results might be useful and bring some relief of symptoms or not..

well, i will probably try to post tomorrow on my gi stuff...boy, fun stuff to talk about huh? thank goodness we have each other here!

i don't really have any insight for you. just glad that he is doing the two things i would be most concerned about....a more conservative prep AND watching the anestesia stuff...

please keep us posted....

i just wanted to let you know i was thinking about you and sending hugs!

emily

p.s. i am having a mental block, so please investigate this info. more in case i am not right...but i think i remember reading something about melatonin not being good for people with OI for some reason...but i am having brain fog about it right now....

emily

so far i the experiences of folks who have tried mestinon seem to be pretty mixed from what i have read here and on ndrf....

hmmmm.....

i haven't tried it...it was recommended to me by one POTS doc and not the other....so....that's that scoop from me!

emily

blackwolf...

what to even say, where to begin? i don't know...i just want to send you lot of HUGS.

i am stressed about having a guy here to paint the living room or stressed watching the debates on tv...it all gives me chest pain! and your stress is so HUGE...i cannot even imagine the affect that would all have on POTS....yikes! you are so brave and strong. somehow i missed the whole story with your brother and family, but picked up a little from this string of posts...it was enough to make my heart break for you.

also, i dread those sleepless nights like that. they are an absolute nightmare, i agree. i just wish some meds would really help you! me, i could not live withouth my ambien. i still don't sleep that great, but it helps a lot.

when i am in a really bad spell i don't like to be "alone in the dark" either and like to have a light on or the radio or something! and, yes, i couldn't live without my dog. who suddenly is extra-companionable during my last set of spells!

so, i just wanted to say that i cannot imagine the level of stress in your life...is incomprehensable to me...and you amaze me with your strength and courage.

i do hope that you will soon have some relief from your symptoms too...so, sending hugs all the way from PA to SD!

emily

yeah! i love good stories like all of these!

i think this site is a testament to the kindness that is still in people!

i know, i'm a big mush...

emily

nina!

you sound just like me! i am always saying...can i get a new body? that cracks me up! i even put it on my birthday wish list!

but, unfortunately, new bodies seem unavailable right now...so until then, i guess we have to keep plugging along with the ones we have...

i am sorry you are having a day of feeling overwhelmed. i wish i had words of wisdom...but i dont!

so, i will just say i am sending you good thoughts and hoping that you will have relief soon from it all...and hopefully not too much pain from the next test. these tests all make me crazy...it's like "hurry up and wait"...i hate the waiting for the results, the next step etc. (sorry, i am cranky too as i wait IMpatiently for my CT results!)

from one cranky pots girl to another...hang in there and i'm pullin' for you!

emily

hello and welcome!

i don't have much to add either! i think everyone already covered all the bases.

so, i just wanted to welcome you to the board. i do hope you find some answers soon to what is causing your symptoms.

i have that annoying heart pounding symptom constantly too and i hate it...i have it even though the tachycardia is under control.

definitely let us know each step of the way what you are learning and finding out from the tests...

emily

well, here's another opinion from my new pots doc!! it's amazing how differently the specialists feel about the flu shot....

he does not recommend getting the vaccine b/c he has had patients GET chronic fatigue from them...so unless you have tolerated it well in the past he doesn't recommend it.

he told me he does not recommend the shot to his patients and would rather use some of the new drugs available now to help if i DO get the flu than mess with the vaccine.

i felt i should post thing b/c earlier i posted dr. grubb's belief that we should get the shot... a tough one!!!

this year the decision is made for me with the shortage of vaccine, but i think now, in the future, i will not get them b/c my reactions to them over the years have been mixed.

emily

THANK YOU ALL SO VERY MUCH...

you all made me cry!

my 29th year is off to a bit of a rough start...so i really needed that boost from all of you! i am so glad i checked in tonight...i am feeling lifted and encouraged by you all...

you are all right that i have time for my dreams to come true...and right now...i will take it one day at a time and keep HOPE!

and i will focus on all of the love i am surrounded by!

emily

geneva,

THANK YOU! i needed that boost of knowing someone's thinking about me! i am glad i logged on quick tonight!

oh man...that stuff tastes terrible! my caregiver person, jodi, was the best cheerleader though and distracted me the whole time...but, it wasn't COLD! if you want it cold you have to pick it up ahead of time i guess. now, if everyone likes it better cold, why don't they just keep it that way there!?

i tolerated the iodine injection fine too.

anyway, i made it through (kept my eye on the prize, merrill)...

i had diarrhea afterwards, but not till i got home, and have horrible pains that i think are gas from that junk! yum, barium. the tech tried to tell me some people like the taste of it! eek!

anyway, i woke up at 3 am last night with the same SEVERE pain, nausea, etc. that i had when i went to the ER a couple of weeks ago. i took percocet and zofran and still lost all of my cookies and the pain stuck around.

so, it was good that i was scheduled for the CT scan, b/c the pain is really, really extreme...nothing like i have ever experienced before.

i really thought that everything would go so smoothly since i was so well-prepared! but, instead i had another "attack"...

like all of us when we get testing...i don't know whether to hope they find something or not! but, i think i hope they figure out the problem!

well, i rambled on an don more than i suppose anyone really wanted to know!!!

THANK YOU SO MUCH FOR ALL OF THE TIPS AHEAD OF TIME! I FELT BETTER KNOWING THE POSSIBLE OUTCOMES...and was prepared when i did get upset tummy afterwards.

i am just hoping that i will get some rest tonight and not have anymore "attacks"!

emily

geneva,

you are not a wimp!

just had to throw that in...

good luck with the procedure. gallbladder stuff seems to be "trendy" this past week or so, huh?

let us know how your test goes...

i freak out about the stuff they give you too...b/c like you said...we are always, as my pharmacist says, "the less than 1% population" who gets side effects or gets the weird side effects or whatever....she gets out her big drug book and teases me b/c she learns something new every time i come in...thank goodness she's great...

emily

thanks everyone!

i called today and am scheduled for tomorrow, which is good b/c it will be over with and i won't have time to spend worrying about it!

thanks for all of your information...it helps to go in with that knowledge...

even if it does make me sick at least i will know that i am not crazy!

my caregiver person...she comes once a week or as needed to help out b/c my mom is overwhelmed...is taking me and she is prepared for whatever and will stay with me at home all day if i need her! so, i am prepared for whatever happens...better to be prepared than not!

hopefully all of my preparing means that everything will go smoothly. plan for the worst...and then, well you know...it usually turns out better than you thought it would.

emily

nina...i can't believe it takes so long to get the darn results of your test! mine were back the next day...inconclusive, but at least they were back. ugh...i hope they get a move on for you.

Gayle,

I am glad that you posted that....b/c I heard it right away on NPR this morning and was so sad too...

What everyone said so far is so true...he really showed amazing spirit and courage...and became such an advocate for people with disabilities.

I took a psychosocial aspects of disability class, and many of the "hard core" disability people are very negative about Christropher Reeve...which really annoys me...b/c I think he was amazing...

It's weird, b/c I don't get into celebrity stuff, but I really admire him, and he died on my birthday...which makes it so that I will NEVER forget him.

May his memory be a blessing...

Emily

p.s. amy, i also wanted to say...that i have very similar responses to stress with the heart pounding like crazy, chest pain, agitation, etc....the same response to positive or negative stress. and putting my dog down really did it to me also. like you, even something like you described in terms of seeing kerry can set me off...not saying that as a political statement, but wanted you to know that i have similar reactions to situations as you...it becomes very difficult to separate out the anxiety and POTS symptoms b/c they play off of each other so much....ugh!!!

Amy,

I am crying too! Reading what people wrote to you and reading what people wrote on my other post!

So, I am pooped...but I just had to say....

1. I am soooo sorry about your dog. I had a big crash POTS wise after it all with my dog. It is so emotional...our pets are our lovebugs. We put one of our dogs down last December...almost a year ago...and I STILL get teary-eyed thinking about her spirit and miss her so much. She loved the fall, the leaves, the crisp air! Our other dog, the wild child, doesn't seem to notice these things! That is what is so amazing...each dog is its very own personality and unique spirit...so, let yourself grieve and miss you dog! So many of us are pet-crazy here, so we feel your sadness! I'm Jewish, which leaves the heaven thing out, so I hang on to my favorite memories of her and smile through my tears...making her memory a blessing.

2. Ugh! Drink milkshakes, my foot. What a dumb prescription. I second what everyone else says...time for someone else. But that is so hard...b/c it feels like setting yourself up over and over again, you know!? Also, just wanted to make sure you have been tested for celiac disease? (the weight loss thing makes me think of 3 people who had the same thing happen).

Please keep us posted...and I am glad the posts lifted you up...they always do me too. I think you have a beautiful spirit...hold on to that when the drs. give you a hard time!

Later alligator!

Emily

Hello All!

Well, today is my big 29th birthday!

I just needed to post for a little support! I am trying to make the day as good as possible and have been surrounded by a lot of love so far today...

Still, I am just struggling a bit, like Stacey was on her birthday...

I am feeling so awful right now, it is hard to enjoy the phone calls, etc. You know?

I was really hoping for a "good day" today, but that didn't happen...I feel like i could just fall over in the bed right now.

I am just feeling a bit sad...thinking about the fact that I have spent almost all of my 20's sick...and am still pretty much homebound...ugh! Also, thinking about the whole marriage, kids, blah de blah....

Mostly though, I really just wish we could get a "free pass" or something for our bdays and not feel sick on them! well, I wish we wouldn't feel sick ever, but if we have to be sick a little break every once in a while would be nice! I asked for a new, working body for my birthday, but they seem to be unavailable! Oh well, I'll keep working with this one I have!

Anyway, enough whining...thanks for letting me vent that. I really needed that. Birthdays are like this great thing, this great celebration of who we are, but also, they make me a little sad.

I really wanted to say THANKS to all of you....my post heading was supposed to be like the happy birthday song...la la la la...can you hear it? he-he.

I have only been on this site for a few months now, but I am GRATEFUL TO ALL OF YOU EVERY DAY for your words of wisdom, compassion, kindness, empathy, etc. etc. I can't think of enough adjectives. This site is always a "safe place" to go, to be when the rest of the world seems like it doesn't "get it" or even when you need to know something more technical. So, on my birthday, I just wanted to thank all of you for being such a blessing in my life. People here amaze me everyday with their generosity...i feel a bit guilty whining right now about my birthday b/c i know you are all going through yuck too!

So, my mom helps me keep my "playful spirit" alive...hope this makes you all laugh. I have been teasing her that she wouldn't buy the game candy land for me when i was a kid. So, she got it for me for my birthday...it is such a riot. I think it will be just my speed given my brain fog these days. he-he. She also got me an electronic hand-held hangman game and a word find book. I may be getting older, but I am still going to have fun! Now you will all probably think I am crazy! But, it's the little things that help! And I still love to play!

My dad and stepmom took me for a little drive to see the countryside and fall colors which was nice (except for the fact that i was trying to hold my head up... ) but it was so nice...the country is so pretty in PA! okay, so i am a little biased....I took some pics and hope that they will come out so I can put one up on the DINET picture site.

Okay, I really am done rambling now. I just needed to touch base on this day with you all here at Potsplace!

Later alligators!

emily

julie?

where is the post that you wrote? i am very confused!

i don't know what is going on...but can tell from the responses that you are having a rough day! so, please know that i am thinking about you!

emily

gena,

that was really good advice...i don't know why i didn't even think to ask about what was in the stuff...b/c i am on a strict gluten-free and dairy-free diet! thanks!

emily

well, i talked to the nurse at the doctor's office today and she said that he felt i would have to try and "slide by" without the shot....so that is the plan.

a couple of places in town received their full supply of vaccine, but my office did not...they only got 24 vaccines! so, basically, the nurse said you had to basically be dying to get the shot! i am using her words, not mine! eeek. not good.

although, my dad was in for an appt. yesterday and even though he isn't 65 he got one probably b/c he has asthma and is high risk.

the nurse said that the chronic illness stipulation is very specific...COPD, heart problems or asthma...

she said they might want to give me the pneumonia vaccine. anyone else besides nina have this? what do yout think?

so, i think my decision is made for me! if there is supply left somewhere else after those who need it most get it, then maybe i will do that. but right now, it seems that in our area it really needs to be rationed carefully...so let's just hope, for EVERYONE that this is not a bad flu season!

i live in a univeristy town and i am picturing all of the students sick! yuck! and my parents teaching to a classroom of coughing, stuffed-up kids! eeek!

emily