wareagle

I will be thinking of and praying for you and your family Nina.

You should look at Mayo Clinic in Jacksonville...when I was there a couple years ago they had a specialist. There's also a doc. in Pensacola...it's would be a 5 hour drive from Jacksonville...I'm not sure about GA. Have you looked at the physician's list on DINET? I hope you find someone soon!

Yaaayyyyy!!! Way to go..I'm so happy for you!

Hey guys...I made it through the test..Yay!! It really wasn't so bad...I didn't have really any pain..just some major nausea when the CCK was injected but it passed quickly. I think the worst part was being so weak from not being able to eat or drink anything before....then having to lay still so long. You were right Lois..that was a lot harder than I thought it would be..I tried to find words to break down like your scrabble suggestion but there was only one that I could see on the machine and I had to strain my neck to see it! It's just as well though b/c I'm a horrible speller! The guy doing my test did stream music through his computer for me so the time went a little faster and my mom stayed back there with me. I have been feeling fairly yucky since the test...I'm really hoping to get some rest this weekend and praying that I don't have any more "attacks". We should know the results by Monday. Em..It's so good to see you posting a little more..how are you feeling hon? I went back and looked at all the old post re: your gallbladder saga and it was VERY helpful! I've been meaning to send you a message for awhile..I hope things are starting to go better for you! Thanks again to you all for your help and support!

Hey Stella..it sounds like you had a tramatic test! I'm so sorry you had to go through that at such a young age. I guess I've been having problems for 5 weeks now. I've had 2 "attacks"..one a month ago and one last Friday. Lois..thanks for the reminder! I checked my order and it says HIDA scan with CCK...is that what I need to get? I take it those of you who have had this test didn't have a very good experience...I was just wanting to know what to expect and if I was going to get sick if I needed to forwarn the people in radiology or if they would be prepared for it. Love to you all

I am a bit worried about the pain involved...it seems a lot of you have had a rough experience with this test. How long does the pain last? I don't know what I'm going to do if this test triggers an attack for me..during these episodes I can't stay still and last time I vomitted . Will there be someone in there with me to help if I have to get sick?

Hi guys. I saw a new GP today and she was awesome!! I gave her a DINET brochure and she was very interested in learning more about this condition. She even has another patient with POTS...apparently they just live down here part time..but even so the doctor was at leaste a little familiar with it. I told her about the GI problems I've been having and those severe episodes of pain and vomitting..my ultrasound was clear so I asked if I could get a HIDA scan...she was very receptive and I have the test scheduled for Friday morning. I'm a little nervous about the test and what the results might lead to but I've been reading through a lot of older posts on this subject and I feel a little better about everything. I wanted to thank you all...with all of your past experiences and support I don't feel as alone in all of this. Love to you all!

Thanks guys! After reading your suggestion of a HIDA scan Lois I did some searching of past post regarding gallbladder disease. I didn't realize that you could have a "normal" ultrasound and STILL have gallbladder problems. I have a sinking suspicion that it IS my gallbladder that's acting up...the symptoms seem to fit it to a tee. I will definatly request a HIDA scan when I see the doctor tomorrow...I'm also counting on her referring me to a GI specialist...I would make my own apt. with one but usually with specialist you have to have a doc. referr you. I have a question for those of you who have had gallbladder problems...is there ANYTHING I can do in the time being to prevent another attack? I have been living on oatmeal, chicken soup, bananas and applesauce for over a month now...last Friday when I had my latest episode I had eaten a huge meal of shrimp, french fries and a crab cake...I know..I know...I cringe when I think of it now. I had eaten the same thing the two previous Fridays though without problems so I didn't really think about it. My mom always gets us "restaurant" food on Fridays since I can't go out to eat and I guess I got a little carried away...I've just been so hungry...oatmeal only goes so far! I remember someone mentioned eating baby food after a gallbladder attack...anyone else have any suggestions? I'm not trying to get ahead of myself..I know it could be something else.... BUT if it is my gallbladder...are there any other treatments besides surgery? I've tried to research but all I've found is info. on gallstones....uggggggggg....HELP!!

Hi guys...I'm sorry I haven't been around much..I've been so sick and scared..I'm at the end of my proverbial rope. I've been having chronic diarrhea for 2 months now..some of you may remember I had some sort of GI attack 4 weeks ago and went to the ER...with no answers. I saw my POTS doc. that next week and he ordered stool tests and a ultrasound of my gallbladder along with some blood work. Well..I finally got the ultrasound and stool tests done and had to fight to get the results to my doc. then once the results were in last Thurs. I didn't hear anything from my doctor. Friday night I had another attack...the pain started in my back right below my shoulder blades then wrapped around to the front until I felt like my rib cage had me in a vice grip...got very weak, sweaty, horrible pain just like last time..only THIS time I started vomitting. It was terrible...my Mom was about to take me to the ER again when it all abruptly stopped..again. (it tends to last about an hour) So...all weekend I've been terrified very sick and weak..emotional... Monday morning I called my doc. and left a message that I really needed to speak to him and get the results of my tests....at 3:00 I still hadn't heard anything so I called back only to find out that my doc. had left for the day!! The woman I spoke to went and got my test results and said that everything came back "normal"...I asked her to please contact my doc. and ask him to call so that I could speak with him and find out what was ruled out by the tests and what to do next. Well...she called back and said that my doc. said there was nothing more he could do as this wasn't his area... I felt like an abandoned child... he didn't even refer me to another doctor..I mean my POTS doc. has always been so great and supportive..I can't believe he couldn't even talk to me for 5 minutes!! So I've made an appointment for tomorrow with a GP in my area to see if maybe she'll be able to point me in the right direction. I'm just so upset...I feel like I did when I first got sick with POTS...for over a year I was just tossed from doctor to doctor none of them really caring what happened to me. I feel like once again I've been left alone out on a limb...I'm just so tired of having to fight for everything. I know a lot of you have GI issues like celiac sprue and IBS...I've been trying to research digestive disorders to get an idea of what testing is involved. Is there anyway to diagnose these problems WITHOUT haveing invasive testing done? My back has been so sore and tight since my first "attack"...I just don't know what could be causing all of this...the diarrhea I can live with..but I can't live with these painful attacks. Any advise or info. you guys can give me is much appreciated...I just want to be really prepared for my apt. tomorrow and I want to ask the right questions. Sending love to you all!

Yessss!! What a relief...I'm so happy for you!

Have you tried nasal sprays like Nasonex or Flonase? I use Nasonex year round to prevent congestion and it's been working really well for me...only draw back is that it can get expensive..but for me it's definately worth it!! I hope you find some relief soon.

Welcome home Melissa!! I hope that you'll be feeling better soon...sending good healing thoughts your way.

Ugggg Nina..I feel for you. I've had the biopsy twice and the chrio (sp?) surgery once..all BEFORE my POTS kicked in. I was actually surprised with mine b/c I didn't have pain with the biopsy but the freezing of my cervical cells was NOT fun!! I had asked for pain killers before the surgery and at first the doc. said "advil should do"...but I was not going for that and demanded something with more kick and she gave me loratab. Thank goodness b/c even with the loratab on board the "surgery" was pretty painful...horrible cramping...sounds like what you go through with the biopsy. Seeing how you've been through this procedure multiple times...is there a reason your doc. won't give you any good meds? Or like you said..even a little Xanax would probably help...I don't see how it could interfere with the procedure. Good luck today...I hope it's quick and as painless as possible!!

I hope you get well soon Mel!! Thanks for the updates Michelle... You are in my thoughts and prayers Melissa!

Thanks for all your input guys!! I've scheduled an appt. with my POTS doc. for next Mon. I'm still sticking with mostly bland foods, trying to stay hydrated, and keeping the gasX handy. I THINK this might be IBS..but I'm not ruling out the gall bladder or gluten intolerence. I'm still feeling pretty yucky...headache..weak and shakey...maybe a virus? I have been eating a lot more veggies lately..especially at night so I don't know! Thanks again for your support and suggestions!

Okay guys...TR nite around 8 I had some sort of "gas attack"...I had bloating and alot of pain and pressure in my back and abdomen up to my diaphram..I took a gasX and about 15 min. later it went away and I was fine...then it happened again around 12:30 only this time after I took the gasX it didn't go away. After 25 min. I woke my mom up and she took me to the ER...I was literally rolling around on my bathroom floor in pain..I was weak and shakey and almost vomitted several times. Of course when we get to the hospital about 40 min. after I took the meds. It started to subside..then I just felt foolish for going into the ER with "gas". The doc. actually was familar with the term "dysautonomia" but I still refused a shot of meds. so he just gave me more gasX and I was on my way. Since then I've been scared to eat much of anything..I've been sticking to bland foods and taking gasX after each meal..the doc. said I could take as much as I wanted b/c it's not absorbed into the blood stream. I'm still scared it's going to happen again...I've been feeling very weak and queasy..chills..but no fever, vomitting (knock on wood) or diarrhea. Prior to this I've been having chronic diarrhea for almost a month. My regular doc. is currently out sick so I haven't been in touch with him yet...don't worry I will be speaking to him about this. Have any of you had this happen before? If so how do you deal with it and prevent it from happening again? I swear I've never felt pain like that before...and if I never experience it again it'd be too soon! I know several of you take gasX...do you take it regularly..is that really okay? I can't keep eating like this..I'm not getting enough sodium!! Any help would be welcome!

Happy St.Patrick's Day everyone!! May we all enjoy the luck of the Irish today and find our pots o' gold this year!! Love to you all!

Oh Morgan...you look so pretty..I LOVE the dress!! What a handsome family you have!! Thanks for sharing your special day with us... Congrats again!!

Congratulations Morgan!!

Oh Morgan I'm so excited you're getting a chair!!! It sounds like you and your docs. have everything set to get it approved...I'll keep my fingers and toes crossed for you!

Loved it!! I'm with Michelle...it made me hungry too...I haven't had pierogis in sooooo long now I'm craving them!

Wow Melissa..you must be so touched..sounds like you've got yourself an awesome brother! It's amazing how information on this disorder spreads....apparently ALL of my friends and family have told at leaste one person about me and POTS..and it's spread from there. One of my best friends is an attorney in a "small" town here in AL and she constantly has people coming up to her asking about me...keep in mind I live over 200 miles away and have never met any of them...some of them she didn't even tell..they heard it from and friend of a friend..ect. I really makes me feel loved to know that those I care about are out there advocating for all of us.

YAY!!!

Emily.. You continue to be in my thoughts... I'm so glad that the doctors have a definate direction to go in now... Keep hanging in there...better days are ahead !!

Thanks so much for the update Melissa...I was really getting worried. Em, I know you don't have a lot of energy right now and things seem really "dark"... Just know that you are in my thoughts and even though things are tough I KNOW that you will get through this....hang on hon...better days are coming. Sending lots of love and ((((hugs)))) your way.. Michele