BEE

Just wanted to say hi and welcome Holly..POTS is definitely difficult to deal with..I try and manage as best as I can. I have had it for about two years now. I know that i have gone through phases with this emotionally and physically. At first it was very hard to deal with the symptoms and now that I know more of what is wrong with me it has made it easier. Of course you have your bad days.

I think that this forum has helped me in many ways to cope and know that I am not alone. I used to post all the time when I first got sick and now I kind of stay in the shadows and learn.

Take care and keep your head up..Bee

Good luck with this Dayna...

Just wanted to tell you to hang in there and I am wishing you luck..Have courage..Bee

I will say that a certain docs NP noted that in me and asked me if it was after childbirth that I developed mine. Must be something they look for.

LULU you poor thing..Ohio weather has been wonderful I am in the northeast area. All I can say is take it easy as mcuh as possible dear and make sure you stay hydrated...

BEE

Best of LUck at Mayo LindaJoy I hope they can help you figure this out....

Glad you are home and make sure you stay home and take it easy!!!!

Bee

Inner ear and Labrynthitis...I remember SO well the week I stayed in Toledo...now you my dear are the new bowlingball head....

I have no words of wisdom but try and keep eyes open when you move your head it is much worse if you shut eyes and try and move.

I am sorry you have this sweetie..

But remember it will go away just takes quite some time

Bumblebee

I sent you a PM...I am familiar with this..and if you can look back on old posts.

Thinking of you Melissa and let us know if you need any visitors I am in the area, will be at University tommorow. Take care girl.

Belinda

I am thinking of you I know the hardest thing about this is that you feel good for so long and then you fall back into a pothole again. Keep your head up and I am thinking of you.

Belinda

I take Reglan as needed and levsin as needed. I am on a PPI for acid. And every now and then I feel really nauseous...For me at lest I go through cycles with my GI issues.

yep..and sometimes they are like twitches right under the skin..sometimes like muscle spasms.

Slow deep breaths and try saying a word or counting slowly when you exhale make sure you are taking air into your nose and out through your mouth..I do this a few times when I am laying down and whewn I feel like I cannot breathe..try and concentrate on slowing your breathing down ...sometimes I know I have been told that I am getting too much Co2 not sure what is causing it for you...

Um..also try and put your hand on your belly and that will help you to know if it is going up and down if you are taking good breaths.

I cannot stand this symptom..Hope it doesn't lst for you too long..

Take care girl,Bee

HAPPY REALLY BELATED BIRTHDAY J!!!!!!!

I just wanted to add my two bits..I have also formed major allergies to everything..I am on some meds and trying to control my climate around me as much as possible..I am looking into the mast cell disorder.

My nasal passages completely swell shut..I again have never been allergic to anything til recent. Another thing the digestive issues come and go with me..one minute I cannot go and the next minute I have the runs.

Mostly cannot go. So this is very common is autonomic dys. I will let oyu know anything I find out on the Mast cell.

Good luck and I hope she feels better soon>

Bee

It is the pulse pressure I think there was just a post about pulse pressures just recently...very common to be high or low with me in DYS.

My endocrinologist was following up on the fatigue..I had addison's testing done prior to his visit..Negative on addison's. He listened to alot of my symptoms and was the first doc to do orthostatics on me..he then said I think you have something callled Dysautonomia..Thank goodness for this man!!! Umm..he checked things like sugar and hormone levels on the first visit. And then said I needed to see autonomic doc on second visit after seeing tilt results.

So all in all he checked hormones,sugar levels and came up with the Dysautonomia theory for diagnoses.

Good luck..

Bee

J..You can get palpitations from indegestion,POTS, Hormone imbalances, just about everything...

Bee

Very common I either have a real high pulse presure or a real low one...

Rebecca..I am so sorry your appt. was cruddy. To say the least.. Get into someone who is familiar with dysautonomia and POTS please..We know your not an actress and remember this nurse gets to go home to her family and forget all about this..YOu unfortunately do not!! So sometimes you gotta be your own advocate when it comes to the medical field..if possible find someone else..Okay?? I am just sorry you had to deal with incompetent care..

Bee

I am still waiting and I applied in Feb./March..we'll see haven't heard anything yet. Dana make sure you follow up on stuff like the interview and such..and good luck!!

You poor girl..sorry about the nasty nausea..wish I had some good suggestions.

Take it easy J.

Bee

I jsut want to add that I had the swallowing issues as some of you remember..they were intense!! This is a symptom some of us have..which I am told is partly sue to the fact you have to remember nerves are all over our bodies. Periphial ones!!! This has seemed to tone down for me a bit. One thing that helped me was aloe vera juice to soothe and kkep the esophagus and throat moist..

Also do you have reflux or gastroparesis which could contribute????

I second in that everyone is different...but Wellbutrin was prescribed and I totally denied it knowing it would make me more agitated. But the way they workj is it actually blanks out the overproduction of the adrenaline oyur already producing and keeps most at an even keel. Which unfortunately doesn't work for everyone and in some takes more than two weeks.

I reacted to SSRI's horribly so I gave that one a no-no. I hope if oyu try it it works for you...

The one thing is that some of us because of anti-cholergenic effects of these drugs it is harder on our bodies that is something medically documented.

Just be patient and if it doesn't work don't give up!!!

And a very happy birthday to your son!!!