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((((Morgan)))) Take care...hope to "see" you again soon...your presence will be missed!

Thanks Morgan...really needed to hear that right now, you have no idea! Em...I'm so proud of you! It's scary but we'll support each other okay?

Hi Mary..sorry you're having so much trouble! I don't remember my numbers exactly...but I know one of the first TTT I did I "only" went up about 28 bpm..so they dx. with an "atypical anxiety disorder"..what a crock. When I saw my specialist for the first time just looking at the report from my first evaluation he could see there was something going on! According to your numbers you technically fit the profile for a person with POTS. If you look on the main DINET page it states that a person that has an increase of 30 bpm upon standing and/or a sustained HR of 120 they can be dx. with POTS. Many doc. don't realize that blood pressure fluctuations aren't necessary in the dx. of POTS. I'm not sure I understand why your doc. won't referr you to a specialist. Perhaps if you call the specialist yourself and tell them your numbers (that's what I did) they'll see you w/o a referral. Or simply go to another doc. until you can get one to referr you...that's one problem I've never had...most docs. want to get rid of me so they were happy to referr me to some one else! LOL Maybe print out the dx. info. from DINET and present to your current doc. and then ASK them why they won't referr you. It's not like they're going to get into trouble if they send you to specialist and you DON'T have POTS..good grief!! Keep us posted!

Happy V-Day everyone!!! Hope it's filled with love....and yummy chocolate!!

I use a rollater walker with a seat...LOVE it!! I actually kinda looks like a mini shopping cart b/c it has a removable basket so people don't seem to realize I'm using a walker. It gives me a lot of security knowing I can sit if I need too...also helps me feel more balanced on those days when I'm kinda' wobbly. They are more expensive than the seat canes but still light weight and affordable. Just another option for you! Welcome to the board.

Hey Dizz...not much to offer on specific concerns but I've been through both local and general anesthesia with POTS and did okay with both. As far as your doctor addressing your issues..you'll probably need to talk to the actual anesthesiologist that will be with you during the procedure. I've found that although the doctor doing the procedure may be able to reassure you to an extent ultimatley you'll be in the anethesiologists hands...don't worry though...the ANS is kinda' their specialty too!! I did take a while to fully recoup following the procedures I've had...several weeks of increased POTS symptoms...but all and all not too bad. The only thing I can tell you is that I've always had lots of IV fluids before and after...and closely monitored...stayed in hospital over night vs. outpt. for my surgery. I'm sure others will have more detailed info. for you...hope it all goes well and you get that ear taken care of soon!

Congratulations!!!! I'm so happy for you both...he's a lucky man!! Keep us posted on the plans.

YaaaaYYYYY! I'm so glad they got a port in Melissa! Hoping everything else goes well and you're back home soon.

Thanks guys...heard from my Uro. they're giving me sample of UTA (Urella) to try. They said if I tolerated the AZO then this should be okay too...we'll see (possible side effects made me nervous, but they usually do). Not sure what to do past that point...looking at all the possible treatment options. The hydro really helped me too..more than I thought it had apparently. Don't mind doing it again...just hoping to find a more permanent / less invasive solution. This blows!! How are we supposed to get enough sodium when salt irritates the bladder?! ARRRRgggggg!

Hey guys...need some help from those of you with POTS and IC. I had a cysto. w/hydrodistention last Aug. results showed no bladder lesions or any problems indicative of IC but b/c of my symptoms and response to diet changes have a tentative dx. of mild IC/pelvic pain. I've been doing okay with it and have had no treatment other than trying to watch what I eat. This past week has been horrible though, don't know what's going on...somehow triggered a bad flare. I had just been to the uro. too and told him I was fine! I took an at home test for infection and it was negative...don't worry will go to doc. to be sure. I have a call into my uro. too but wanted to get your opinions before I saw him again. I'm not sure what treatments are okay for those of us with ANS problems...so sensative to medications...are rescue installations okay for us? I don't know what to do..I'm so miserable. Got some AZO but don't want to take too much w/o consulting Dr. and it didn't really help anyway. Doing the whole heating pad thing...taking prelief before meals. I've been pretty slack with my diet so I'm going back to being really strict but don't know how long that will take to help. Any suggestions or experiences would be so appriciated!!

Just wanted to pop in and let you know that I had 3 root canals..then 3 crowns done all post POTS. My endodontist and dentist used carbocaine....it does only last a max of 30 minutes so you'll need more than w/regular novacaine. I did fine with it though...you should be fine...the aniticipation is the worst part!

(((Melissa)))

Thanks for the info. Sophia. I don't get that channel either. Does anyone know it you can watch the episodes on line perhaps? This is exciting!

He's beautiful Nina! My how he has grown...pretty soon he'll be bigger than you!

Maybe try some compression? I haven't traveled much since POTS...but I know that lots of people recommend using compresstion hose or girdles for flying...maybe it would help with driving in high altitude as well?

I'm the same way Lisa. I've only had one cold since developing POTS and I'm almost at my 5 yr. mark. (knock on wood this trend continues) I'm thinking it's either b/c my immune system is in overdrive b/c there's some type of unidentified autoimmune issue going on OR perhaps it's b/c I'm not out and about in public as much as I used to be. I'll go days and sometimes weeks without coming into contact with any other person besides my Mom. It's a mystery...but one I'm definately not complaining about. I couldn't image dealing with the flu or bad cold on top of all of this!

I hope everyone has a wonderful and joyous holiday! Singing Santa Love and peace to you all! Michele

That's the funniest thing I've seen in a long time!!! I made elves of me and my mom and sent them to everyone I know! I can't stop laughing . Thanks for the link Nina!

Hey Beth..I pulled my insurance claims from my gallbaldder testing and surgery. I sent you a pm with the amounts. I urge you not to let the cost of medical care prevent you from getting help though! Remember, hospitals and doctors will work with you regarding payment plans and reduced charges. Good luck hon and keep us posted! PS. At 4 % it looks like I won for the lowest ejection fraction!!! (Even though Melissa did give me a run with her 6%) Whoo Hoo...do I get a prize?

Happy Halloween Everyone! Hope you all enjoy lots of treats and steer clear of the tricks!

I had my gallbladder out a little over a year ago. I was 29 at the time and had never had problems with it before. My symptoms started with chronic diarrhea then came the gallbladder attacks. I didn't know what was going on the first time, it was the most awful pain I'd ever experienced, but b/c it wasn't limited to my right upper abdomen I didn't think it was my gallbladder initially. I had an ultra sound done that came back "normal"...then I had another attack with vomitting and knew it must be the gallbladder. I asked my GP to order the HIDA scan with CCK and she did so without hesitation...apparently the ultrasound ONLY rules out stones, you HAVE to do the HIDA to check gallbladder function (I'm sure your doctor will agree to the test). My test results came back with an Ejection fraction of 4%...no lie, no typo, it was functioning at 4%!!! I was immediately seen by a surgeon who actually said that they only take them out if the patient is having symptoms...and since I was I had the surgery ASAP. Even if you choose not to have surgery it is important to have it checked out and monitored as complications can result from a "sick" gallbladder. I feel much better now. As to a connection to dysautonomia, I'm not really sure. I do know that there are a lot of folks with gulten intolerence and celiac sprue that also have POTS and this can lead to gallbladder issues. I think that's actually what triggered my problems was a high gulten diet. I strongly suggest that you do a search on "gallbladder" as there have been LOTS of disscussions and great info. on all of this before. There are lengthly discussions regarding HIDA scans too. Good luck and keep us posted!

Hope you feel better soon Amy!! Sending good thoughts your way! (((Hug)))

I've been taking Clonodine for several years now. I started with just 1/4 tablet at night...I'm currently at 1/2 tablet but don't forsee increasing the dose. I was given this med. to help relax my sympathetic nervous system and it's helped me a lot. I haven't had any adverse side effects thus far. I only take it at night time as it can make you drowsey. I'm not sure if this medication will work for you but I wanted to let you know that I can be effective. Everyone reacts differently to treatments, I would strongly suggest discussing your concerns with your doctor and if you are having adverse side effects perhaps look into other medications.

Melissa, Just wanted to check in a let you know that I have been and will continue to send good thoughts your way. I hope that the fever issue is resolved soon and that you'll have some more answers regarding your lungs. (((HUG)))

Happy Birthday Em!!