kjmom

Great job 4 getting through it! Reward yourself with a little treat or something you like to do. You deserve it!

Kayla

Aw I'm so sorry :'(. I dunno about you, but the pool/swimming takes away my constant pain. I really hope you feel better soon!

Kayla

That's so great:) its nice to have a friend to talk to:).

Kayla

That's a good idea! Maybe some foods that would prevent stomach pain...that would be nice....

Kayla, 10

Congrats! And my advice is:

-Don't push yourself to hard. I find if I push myself to do something, I feel worse. So just relax and know that there's no pressure.

-Take it slow, put your legs straight at times to prevent pooling.

-If you get nausea, I recommend sea bands. (it's like pressure point bracelets, and they go in between your two tendants on your arms. It prevents nausea very well!) They are life savers for me!

Good luck!

Kayla, 10

I am SO sorry you have been sick for that long:(. It's kinda frustrating that few people know what your going through, but this website helps tremendously:). Do you have relief anywhere? (I have relief from the pool, just wondering) What is your worst symptom?

Good luck on finding a cure! And hold on to hope, just because it's been a long time, doesn't mean it's impossible:).

Kayla

Thanks guys!

Kayla

Kayla's mom here:

Depending on your swimming facility (we go to the Y), some places have a therapy pool which tends to be smaller but warmer. You may want to start out there to get used to the feeling in the water, then do laps in the big pool. I find that Kayla feels better immediately once submerged in the pool, no matter if she's exercising or just floating around. We discovered this before her POTS/EDS diagnosis, which was one of the things that actually aided in the diagnosis.

We leave for 1000 Islands in a few days, where Kayla is a fish in the river! Can't wait. She needs that.

Thanks westernmass! I can totally relate to all of these!

Thank you so much guys! I don't deserve this! The mestonon is actually helping my stomach! I have a good feeling about this "round".

I hope all you guys have a great 4th of July!

Kayla

Kimblegirl: Happy anniversary and have an awesome trip! I'm going on vacation as well in a few days...

Farmeramy: I found out that we all feel good in the pool because it regulates our body so the blood doesn't pool in our legs. Makes sense I guess!

Happy early 4th of July to guys!

Kayla, 10

Ok, I know the plan now:

Dr. Boris is upping the riddelyn (it gives me more energy, it's helping!)

I'm gonna continue taking celexa, (for my anxiety)

And the mestonon (I was on a to high dose before and it made me dizzy) and its a lower dose.

Thanks everyone!

Kayla

That's ok! Im actually leaving now! It went great, he got a lot of new meds for me to try once again, mestonon, and two other names I can't remember. Thanks so much for your replies! I'm so grateful for this website!

Kayla, 10

Hey guys,

My doc appointment is in a few hours, but I'm really anxious . I dunno what to do. I know I will be ok at the end, but I'm still super nervous . What should I do?

Thanks in advance.

Kayla

P.S Best wishes to the rescuers also . They are heros

Oh I heard about that fire on the news . I'm so sorry your going through this, but am glad your home and ok!

Best wishes,

Kayla, 10

I have the same thing! As you can see from the description, I have constant stomach pain. The pool will take it all away. I am so glad I'm not the only one who has this weird relief.

Hope you feel better!

Kayla, 10

I have a chronic daily migraine and I was told the way to test it is with a spinal tap to check pressure/level. Unfortunately, I had a horrible experience with the spinal tap which caused more problems than my original headache, so I wouldn't recommend it.

I know this is late, but...

-When the receptionist at your doctor's office knows your name

Kayla, 10

I'm so sorry:(. POTS can ruin even the best of things. Are you feeling a bit better now? I hope so:). Well, maybe when your fully better, you can go on the vacation again and have the greatest time ever:). I plan to do all the things I wanted to do when I was sick but couldn't when I'm better.

Best wishes!

Kayla, 10

Hey hippychic258,

I'm so sorry your feeling so unwell:(. Fr your dizziness, don't get up quickly, sit on the edge of your bed for a few minutes, then if you feel like you can do it, stand up slowly. When you get up in the morning, drink a lot of water, that seems to help me a bit. (because you haven't drunken in hours, so you're dehydrated, it can help blood flow or something)

I hope you feel better soon!

Kayla, 10

My daughter has EDS and was also found to have mild scoliosis and bilateral spondylolisis. We will have to monitor her every year to see if there's progression but right now she doesn't have any back pain.

Some other things that help Kayla are:

-Shower stool has really helped her blood pooling in her legs and dizziness during showers

-blackout curtains to sleep a little later in the morning

Anxiety, constant stomach pain, brain fog:(. It stinks:(.

Kayla, 10

Wow! Thanks for the tips! Mine are:

-Take your time to get up from sitting/laying down, that can help dizziness/fainting

-Drink a lot of water once you get up in the morning, your dehydrated from not drinking the whole night!

-(Keep hydrated during the day as well, that helps blood flow I think)

-I was told by my doctor that no nightlights can help you sleep, (it's working a bit for me!)

Thanks again!

Kayla, 10