BEE

I just know for me I have educated my own doc and made him fully aware that IF I am to go to the ER per his instructions he had better make sure they understand what to do. If this is the hospital of choice for you to go to...EDUCATE them..if you can with printouts on DYS and POTS. That is how I educated my doc..at first he was hesitant to think thisa was an online disorder..

But after reviewing the last 6 yrs. and seeing the TTT results for himself..he has becopme more passionate towards me..and understand ing the ordeals with the ER.

Even the best hopsitals in the world here in CLeveland don't know how to handle POTS all the time..

SO I took it into my own hands..HOPE this helps Northern.

Bee

I have had gastroparesis for about two years now..I have Dismotility of upper and lower GI tract.

The drugs tried on me were Reglan,Levsin and a few others.

I discontiued due to long term effects. One thing that was suggested to me was aloe vera juice.

Bee

I believe excedrin migraine was also suggested to me by a very valuable POTS frined..she is experienced with POTS many years. I would call SOMEONE and tell them you cannot rid yourself of these headaches amongst everything else. And see if they have any answers.

Thinking of you Jacquie..Bee

ALso make the dental team aware if you have any reactions to epinepherine..they can use a non epi based anesthetic. I had a root canal done last spring and many other teeth fixed..I was very afraid to go for such a long time. BUt you know what I did fine and like I said..think about the non-epi.

Good luck dear..

Bee

Hi J..I certainly hope that whatever is causing this in you tends to go away sooner than later..Hang in there..Bee

Corina..Glad you got some answers you deserve. I can understand the med problem..seems lots of us have issues with that.

Take care..Bee

Jacquie??? Just a thought have they checked your ears..inner??? I know POTS can make you dizzy but this sounds like alot..I feel for oyu girl..And I am sorry your having such a rough time.

Bee

Chica..I sold my house about a year and a half a go..lost a full custody battle(now have son only half the time I used to have my youngest full-time,moved into my parents,lost my job(quit)..So I just want you to know that I KNOW how your feeling. It is pretty cruddy..just trying to keep the sanity. I am a bit older 29 and I know it must be rough at a young age to see all these things happen especially when it is really out fo your control.

Hang in there girl..Bee

Just want you to know I am thinking of oyu Dizzaloo. Hang in there.

Hope they figure things out for her...I am thinking of her.

Bee

I have peripiphial and small fiber neuropathy..I went through eegs,emg's etc. They attribute it all with the autonomic dysfunction. I get burning and tingling sensations..lose feeling in limbs etc. Also have the gstroparesis.

So I hope this helps and it is nothing too serious..get it checked out by a good neuro.

THey tested me for this when I crashed with the full blown POTS..in the hospital. I was negative but saliva testing showed I had adrenal exhaustion beyond and was very close to developing this. I was weak,couldn't move basically felt like I was a croakin.

They did find however that I had had MOno recently which could have contributed and also I was on prednsione which probrably preceded my crash..if not helped cause it. Adrenal functioning went downhill after the steroids.

you can always try aloe vera juice..it seemed to help me with no side effects

more and more fluids..didn't oyu just have an IV therapy???Well lil lady keep on drinkin fluids and try a moist hot compress on back and even on your front if you can. If it is muscles trying to give away blood this wiill help..if it is due to ventricular filling then keep pumping the fluids.

Bee

Hey Kim..Just want to say stick with it GIRL!!! Hope your doing okay..and Kudos for even trying!!

Bee

Marnian..I too was diagonsed with gastroparesis..you really need to watch what meds you take..remember the PPI's are ridding you of natural acid that some of your body does need. You really do need to keep trying to eat..nibble on small amounts crackers,gatorade, pretzels,etc. I at first lost about 38 lbs.(not sure if it was meds or what) but eventually I trained my belly to hold down foods again..

Umm..also I was put on Reglan but had to discontinue due to side effects..One thing a doc suggested to me to help coat my esophagus in a safe way and help me to GO was aloe vera juice. It is quite safe and will help coat your digestive system.

Good luck with this...

Bee

I have autonomic neuropathy..mine is similar to Sunfish..I have the whole works..gastroparesis,tingling/burning,temp,sweat issues,in addition to the cardiac part of it. I still am a bit confused on this. Umm...I am not dissing or advocating prednisone. Iwas on it for a time( abot 2 mths) and after had some not so nice side effects(just make sure you are weened off of it slow long or short term) adrenal function can be messed up with this.. if you decide to try it good luck..and I hope it helps you!!

Mine is interesting I had an ablation in 2000 and then was fine for about 3 yrs...started getting symptoms back two years ago..So who knows when I got it or it started with me.

Beta's aren't for everyone but with some they work..salt realle helps to keep the blood volume up so our pressures can stay up..wish I could offer you more.

Willows..Just wanted to pipe in that your not alone in this..it is a constant struggle with many days that are good and many that are not so good. Thinking of u..Bee

P.s. Big hugs!

Glad yo made it trough your first day back to work..sinus infections and ear issues are a pain I hope you get through them soon..and can enjoy working with the kiddies more.

Get better soon!!

Definitely look into the inner ear approach..a sign of spinning while laying down. I had that after having been diagnosed with POTS,attributed it to the POTS and it ended me in the hospital for a week..I think the term is Labrynthitis. But definitely get it schecked out it is no fun!!

Bee

Oh yeah Yogurt eating helps especially the Activia..

Definitely yes..I never go them until getting sick with POTS.