kjmom

I use that a lot as well! My mom tests my HR every so often. Glad you like it and it helps!

Kayla, 10

For the nausea, I've heard smelling an orange helps. (Never tried it, but also, sea bands are good to. It's like it's a pressure point on your wrist, I wear them all the time) Also, I've had experience with stomach pain, (I have it all the time, literally) if it's cramping, hold a pillow and curl up. You also might need to eat, just like crackers or something. Sometimes it's good to just get something in your stomach.

I hope this helps and that you feel better!!

Kayla, 10

I hear ya! I have mixed feelings about starting a new med because I might have side affects, but some of them work well. I really hope you find the right combination of meds and get better very soon!

Best wishes,

Kayla, 10

Thanks Pam!! The doc was very nice, very tall also! He seems to have a lot of meds for me to try, so I'm hopeful that something will work.

Thanks for all of the replies!

Kayla

Well, she's had pretty itchy eyes but I always thought it was allergy related. She also has rashy skin, fatigue, joint pain bt those could be attributed to her other illnesses too.

Interesting. Before my daughter was diagnosed with POTS and EDS, her ANA came back positive with a positive Sjogren's test. The rheumatologist passed it off as a false positive but this makes me think...

Hi, it's Kayla's mom

We had a great appt...this doctor was so sweet and knowledgeable. He confirmed her POTS diagnosis (her laying to standing heart rate went from 130 to 180!!!) and reassured us that he is in it for the long haul. He is starting with an antibiotic to try and treat possible overgrowth of bacteria in the small intestine then a stimulant to help her extreme fatigue and brain fog. He wants to see her monthly to tweak the meds until she feels better. What a relief to have someone who knows!

Seeing him (or leaving to) in about a half and hour. I'm anxious, but I bet he's a good doc. Wish me luck!!

Kayla, 10

Wow, I've never even heard of this! Thanks for the info.

This article talks about TMJ in EDS:

http://www.cda-adc.ca/jcda/vol-67/issue-6/330.html

I would think that you'd have a few other symptoms in order to get the EDS diagnosis in addition to TMJ though. Have you looked at all of the symptoms? My daughter had many different symptoms that I didn't even know we're related until I looked at the list (high palate, dental problems, scoliosis, velvety skins, etc.). If you have a few of these, I'd get an eval with a connective disorders specialist.

Hi everyone,

This is Kayla. Thank you so much for your replies, I can't wait to find a cure for this dang illness! I have read some of the article and like his positive attitude, ("This experience can be rewarding.") he seems like a good doctor as well.

Thanks again everyone!

Kayla, 10

I totally agree, Sue. I was pleasantly surprised to read that statement. He also recognizes that the treatment process is a long, complicated one and won't give up if the first few meds don't work. That was such a relief to me. I'm looking forward to this appointment.

It's ok puppylove!! Everyone misses out with dysautonomia. (Ive been out of school for 6 months:() Try doing some of your hobbies, I always like working on my book:) it takes my mind off of everything. I am soo sorry you couldnt go with your friends:(. But, you can go on YouTube and you can watch one direction videos, I bet theres millions!

Hope you feel better!!

Kayla, 10

P.S Try and think about your favorite things, from you name it sounds like you like dogs, (go dog lovers!) so think about cute little puppies. That'll help.

My daughter has an appointment with the author of this article this week:

For me, the mestonin made me soooo dizzy. I stopped taking it and I was (ok not really, but) fine. You might want to stop it and try something else, but its your choice.

Hope you feel better!!

Kayla, 10

Hi Jacquie802!

So sorry it's been so hard lately:(. That stinks. I think you'll get better very soon!! I always get up very slowly, that seems to help faintness and dizziness. All of the people on here know having POTS is hard, but you also eventually get better. Hope your relapse ends soon!

Kayla, 10

I know it's late, but I wish you all the luck in the world. I bet you did great!!

Kayla, 10

I had quite a few...I won one in preschool (a big eyed one) I named it Spiky (?) and I've had a few bettas also. They all lived a long time!

Kayla, 10

That's kinda cool! I love dogs! (have 2 a pug and a puggle) They keep me company and sit beside me when I'm having a bad day.

Thanks for the cool post!

Kayla, 10

Well, from my almost 6 months of experience...I'd say feeling nauseous at the doc or in public. Also feeling dizzy when you have to walk up a lot of stairs. I hate being dizzy!

Kayla, 10

Florinef was the first drug given to her after her POTS diagnosis. Her main complaint is stomach pain/cramping and general GI issues, so the doc was hoping this would help. I've tapered her down to .1 mg today, so we are hoping the anxiety will lessen as well.

Thanks. I'm tapering her down to .1 right now because it's concerning that her anxiety went through the roof when we increased the dose. I don't know if her doc would prescribe an SSRI since she's 10? We will be seeing a cardiologist next Friday who is a dysautonomia specialist so I'll ask him.

Anyone else experience this?

Drinking a lot of water before your fully up helps because you haven't had fluids in a while. That might make you feel a bit worse.

Hope this helps you!

Kayla, 10

P.S To answer your question, I feel horible in the mornings! Stomach hurts a lot more and can barely open my eyes. Oh well.

I love reading!

What about...

The Host (Stephanie Meyer)

Divergent (Veronica Roth)

Insurgent (sequel)

Trapped (Michael Northrop)

Happy reading!

Kayla, 10

P.S Hang in there! Its hard having this illness. But a lot of people get better, and i bet you will! You'll get through it soon, I promise! Be strong!