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Hi Dayna...like the others said you'll need an ENT to order the vestibular testing...I think that it may actually be an Audiologist that administers the test? I had it done at Mayo and if I remember correctly it was an audiologist doing the testing...there were actually 3 parts of the test...usually takes about 2 hours although they'll say be prepared to be there for 3...and you'll want someone to drive you b/c the tests intentionally make you dizzy to gage how well you vestibular system recovers/deals with different situations. Definatly worth having it done...I'm glad I did..now I know that the dizziness and lightheaded stuff is POTS. AND if you do find that there's an inner ear involvement there are tx. that can help so it's a win/win ! Keep us posted.

(((Hugs))) These anniversaries are never easy...but it sounds like POTS or no POTS you have a pretty great support system...and during times when this all gets a bit overwhelming you can take comfort in the fact that you are loved!

Hi John...I know how you feel...I was like that a lot in the beginning...still have those days but usually not ALL day..so take comfort in knowing that it DOES get better. I think that you are still going through the dx. process and recently started Florinef? You may want to try some compression while your waiting for the meds to bring you some relief...lots of people here find compression hose and/or abdominal binders helpful....it may help with the light headedness and allow you to be upright a bit more. I hope your feeling better soon. PS. If you are on Florinef it could be contributing to the headaches...maybe talk to your doc. about going to a lower dose? I'm only able to tolerate 1/4 a tab every day...not much but it does help a little.

Hey Em..I'd be cautious about the shot too...can you just do the period every three mths or so with your pills? I do that now...take contiuous pills for 12 weeks then let myself have a period. Is this something you've already tried or is it just not possible for you? Speaking of b/c pills...anyone know of any that DON'T have lactose in them? (I'm assuming yours don't Em..going to check them out). I'm trying to go dairy free and looked up my pills and of course they have lactose in them...along with all of the others I've looked up! Is the amount of lactose small enough that it shouldn't effect me? Good luck Em..let us know what you decide!

Thanks for all the helpful suggestions guys!!! My mom's doing some grochery shopping today so we'll see what she can find in our local stores. I have a feeling we're going to have to take a trip to the health food store to find some of these products but it helps to have some brand names to check out. I haven't started yet...still a bit reluctant...it's HARD to give up so much but I really need to be more strict so that I can see if gluten and dairy are factors in my overall health. I don't know what it is about this time of year but I just want to eat and eat!! Mom's says I'm preparing for hibernation. Love to you all!

Just wanted to chime in and let you know that I had the same experience when I first became ill. I know a lot of these symptoms can be scary and you should explore other diagnostic testing to make sure there isn't anything else contributing or causing those symptoms. With that said...it is possible that all of these issues are related to POTS. There are mulitiple symptoms that can manifest with this disorder with varing degrees of intensity for each individual person. I don't say this to discourage you from getting a full medical workup..on the contrary I believe it's very important to have everything checked out....just know that there ARE people here who have the same symptoms...it's very common with POTS. As to the "keyed up" feeling you get...again this CAN be another symptom with dysautonomia...usually attributed to a hightened sympathetic NS...again this is not abnormal for those of us with ANS problems. If you haven't already...you should check out the main website..all of these symptoms are listed plus a bunch of others!!

Hey guys...well my doc. suggested that I try eliminating dairy from my diet for awhile to see if it will help..he was also supportive of my going gluten free..so I guess I'll be more vigilant with that. I know some of you have stopped consuming dairy and so I was wondering...how do you avoid it? I know to stop with the milk and cheese...I can sub. with soy milk....but what about everything else. Are there other products like cheese that are typically dairy based that have substitutes on the market? I've already found some great things like cookies on my quest for gluten free products that are also dairy free but must admitt I'm not having as much luck finding other "dairy free" things. I know that I will have to supplement my calcium..going to use tums. Any advise much appriecitated! Oh..for those of you wondering why my doc. is suggesting this: it is to help with GI issues and I also seem to be having some mild histamine reactions that have been going on for several yrs. now and I haven't been able to figure out what's causing them.

I may be missing something with this post....but isn't the cause of the lightheadedness and overall yucky feeling when upright due to blood pooling into the abdomen and lower part of the body resulting in less blood flow to the brain? It would make since that the tacky is less when sitting because the blood is pooling mostly in the ab. vs. all the way down to your feet and therefore doesn't require a significant increase in hr to circulate it back to your brain. Since having POTS sitting is not much easier for me than standing and I was always under the impression that it was b/c of the pooling issues. I also feel ill when laying down...my doc. says this is the sympathetic involvement kicking in...(ie. even though the tacky. is gone my sympathetic NS is still over exerting itself in response to me moving about earlier in the day). Like I said...I may have read this post wrong...if so, someone please correct me!!

Bravo!!! ... or is it Brava? In any case Congratulations Persephone!! Way to go girl!

Thanks for the info. Melissa! My doc. is going to this symposium...it'll be interesting to see what info. he picks up.

Oh Amber what a relief!! I'm so glad that everything came back "normal"...I hope this will take at leaste some stress off of you and that you'll be able to relax a bit more now! Congrats !

You can also find these at: bitsandpieces.com They have lots of puzzle stuff including the roll up mats. Have fun!

Just wanted to say "Me too"! I echo the others in saying definately go with the HIDA scan with the CKK... I had an ultra sound that came back "normal" but my HIDA indicated I had an ejection fraction of only 4%!! I also had horrible diarrhea with my gallbladder problems...almost every day for over 2 mths . Since my surgery my GI issues have calmed down a lot....I did start taking fiber supplements more too though so I think that the diarrhea was a little bit gallbladder and a little bit IBS...kinda' like that Donnie and Marie song... ...sorry, guess I'm a bit loopy from lack of sleep! I hope that you're feeling better soon Dean! Keep us posted.

Salem found his way home! He really had mom and I worried last night..he's usually around the house esp. before dark..we even went looking for him. He was here this morning though..ready to eat! We also found out how he's been escaping the screened room...so no more unsupervised time in there for awhile. I'm thinking he definately has some Bermese in him as he is very affectionate and vocal. My pug, Yoshi, is having some anxiety about him being so loving with me b/c she's an attention seeker as well..so I'm trying to be generous with everyone..petting her with one hand and Salem with the other. Hopefully she'll realize that there's enough love to go around. All is calm right now as it is apparently "Nap time"....thaks again for all the great advise! DT, Those kitties are just too cute!!

Thanks for the great advise!! Yes, he does have yellow eyes..I will definately look up this breed as he is VERY vocal!! Not long after I posted I checked and he did indeed use the litter box so I know he is trained. I'm thinking that at his previous home he was let out a lot and/or he's been out on his own for awhile b/c he really likes to get out and roam. Mom and I discussed it and decided the best thing to do was keep him inside at all times with the exception of our screened in room. We actually had to leave him in there earlier b/c I had to go to the doctor and we didn't feel comfortable leaving all the animals alone in the house yet...by time we got back he had gotten out and he hasn't been back yet. I hoping he shows up soon...I just hope he hasn't been on his own so long that he doesn't WANT to be inside. Yes, the vet drained his absess and he is on anitbiotics..Mom said he did very well taking them this morning and actually cooperated. He was given a complete check up and fully vaccinated..the vet said it was safe even if he had already been vaccinated recently. We are definately going to give this situation a try...if it doesn't work and the animals are stressed our vet has someone who can place him in a good home..so either way he should be much better off than he was! Wish us luck!

Hey guys..I figured ya'll would have some insight on this since a lot of you seem to have kitties. A black cat desided to "adopt" us several days ago. I have an 8 yr. old Pug and my mom has a 3 yr. old shitzue (sp?) so at first we were a bit reluctant to take this cat in...we tried finding it's home...etc...but it apparently has decided this is were it wants to live now. Mom took him to the vet yesterday...it turns out he's a he and has already been neutered..aprox. 1-2 yrs. old. Other than an absessed bite on his neck and being a little thin he's in excellent health. He's very loving toward people and is tolerating the dogs..everyone is giving each other space right now so that's actually going okay...The issue is he hasn't used the litter box yet...we've been letting him out with the dogs and obviously he's going then. We wouldn't mind letting him continue to go ouside but we do have cyotes and lots of other strays in the area and for his protection want him inside at night in the very leaste. Last night...his first night inside the house..he got very "vocal" around 5:00am...and really wanted to go out...he's seen the litter box and actually crawled into it..but hasen't used it. So my question is...should we stop letting him out and get him to use the litter box again (we assume he's used one in the past since at one time he was obviously someone's pet)...or would this be too much of an adjustment for him since he isn't a kitten that we're training? It's just hard to know what to do b/c we don't know anything about his past and what he's used to...we're trying to make this transition easy on all the pets and humans in the house so any advice/tips would be much appriciated!

Welcome to the board..I know things are overwhelming right now but you will fing lots of support here. I would urge you to look at DINET's main web page as it has tons of answers to all of your questions...(ie. causes of POTS, EDS, post viral infection..etc).

Happy Birthday!! I hope that you have a great day!! Just think...soon you'll be making that trip to DC..(I think it's in Oct.?). Thanks for being so supportive to everyone here! Take care honey and...Semper Fi!!! (can I still say that if I'm not a Marine?)

Happy Birthday!!

Hi John..If you'll look at DINET's main page under the "what helps" section you will find that SSRI's are listed as a potential tx. for dysautonomia. You may also want to do a search of this forum for "cymbalta" as it has been discussed before. Is there a reason your doc. prescribed this med? I only ask b/c I thought you were still seeking a dx.? I any case..I hope it helps you to feel better!

Happy Birthday Emily!!! Here's wishing that you have a spectacular birthday and enjoy some yummy gluten free/dairy free cake! You bring such hope and light to everyone on this board...you truly are a great friend!!

Okay guys...I heard back from my friend and I think that everything is going to work out just fine. He was surprised to hear about the turn my life has taken but he wasn't "freaked out" about it. I think / hope that we'll be able to rekindle our friendship...as much as it can be with us living in different states..etc. It's really strange to revisit that time in my life...high school...wow...it's amazing how much we grow and change throughout our lives. I remember thinking at the age of 18 that I knew who I was...now I barely recognize that person!! And I mean that in a good way!

Hi Amber! I just had some major dental work done...3 root canals with 3 crowns...and I got through it just fine. You may want to do a search of this site using "dentist"...we had a great discussion not long ago! If you have MVP you will need antibiotics prior to the dental work...or even a dental cleaning. You also may want to stay away from numbing agents that utilize epi as others have already said. Simply tell the dentist you can't have epi. and they'll use something else..probably Carbocaine. The only difference is that the Carbocaine doesn't last as long...only 30 minutes or so. I took advantage of DINET's info. brocures and brought one with me to the dentist along with my doctors contact info. in case he had any questions. I really lucked out with the endodontist that did my root canals b/c he was actually a bit familiar with dysautonomia..turns out his wife has MVPS! So, I felt really comfortable with him. I know how you feel...I was soooo worried about going...I had so much work that I needed and I just kept putting it off out of fear...I really wish that I hadn't waited so long b/c it turns out that it wasn't bad at all!! The worse part is definatly the anticipation...once you get in there and start getting the work done you'll feel so much better. Good luck..let us know how it goes!

Okay..here's an update for those of you following along.. I've been dragging my feet a bit on the whole "coming clean" e-mail. I was even thinking of maybe just letting it all go..but then I got another message from my friend today. So, I just sent him a reply with the whole scoop. I tried to be direct and simple with my explanation...we'll see what happens! I'll keep you all posted! Em, Thanks for your kind words in the other post!! You're so sweet! It is nice to use my education and training every now and then...let's me know my brain's still working.

Welcome home!!! We've missed you! Hope you start to feel better soon...it always helps to have your OWN bed to sleep in..take care!