Monstrosity

Memorial day 2010. The one flipping is Ray I'm off to the left. Ray and I were always up to no good when put together...

How do they determine you have EDS? I only ask so I can rule this out. My family DR said I dont have a connective tissue disorder. However he was the same one that said theirs nothing wrong with me when my issues first flared up...

I've done both Massage Therapy and Accupuncture. Both have helped from time to time. After my first Accupuncture session I thought I was fixed, and then it slowly came back after a few days. As far as massage goes, yes it helps but its not huge for me. I usually wait for real rough spells and then get a massage to minimize my symptoms.

When I'm in sensory overload I notice my right pupil is bigger than my left (granted both are big). Does anyone else get this?

I hope everyone has fun today!

There is a youtube video of a POTS patients with these shivery type all over spasms. I've had them myself and several others on here have also noted similar experiences. If you search on this site, you can probably find the link to the video.

My episodes have been triggered by TTTs or other episodes where my BP has really dropped. They can last up to 6 hours or be as short as 10-20 minutes. They are totally exhausting.

Glad you have had her worked up by Neurologists to check her for other types of movement disorders.

Must be hard watching your daughter deal with this. Hugs to you both!

Never saw Grubb. If your going to the Cleveland Clinic I currently see Dr. Jaeger and Polston. I've heard really good things about Shields and Fouad.

http://my.clevelandclinic.org/staff_directory/specialty_search.aspx

I still havent taken it... I'll fully admit I'm scared of the tremors and worry that they will flare up. I'm probably making a bigger deal than I should I just hate doing this trial and error stuff...

I get these from time to time. They were horrible when I took Effexor. I also had them from Cymbalta. The tremors/spasms were one of the symptoms I noticed.

If your having an extra rough day here's the pic you need to look at! This one always brings a smile to my face. This is my buddies step daughter. We took her last year to get ice cream for the first time (I think she was 3.5 at the time). Anyways it was too funny watching her eat it...

Here's Malia and Squirt

I'm glad you two chimed in, thank you! I'm most worried about the TREMORS... I didnt get the tremors on Propanalol but I did get extreme fatigue and could not sleep. Fatigue is the other main concern of mine. The doc wants me on half pill for the first two weeks and then I'm to call him.

YOUR PICS really brighten up the site ; )

T H A N K S for sharing ~

Bellamia~

I'd chime in but everyone else has said it already. I'm in the same boat.

its a sony we bought at Best Buy years ago. I'll check the model when I get a chance.

It's frustrating because it's one test, wait two weeks. Then another test, wait two weeks. It's been 3 years of this now. I've lost a little faith in the medical feild. I had this thought in my head that we had so much figured out, but have learned we really don't.

If I had to start over and pick my first doctor I think my first question would be "if you don't know what it is will you be straight and tell me you don't know and refer me to somebody you think does?". It takes a lot from somebody to admit they don't know. Often it's simple stated it's psychological if they don't know. Frustrating!

2 years and counting...im with ya i wont stop looking for the root cause

Keep us posted on your sons progress.

Bowser cooling off

trying to hide

He's waiving at squirt. This means he's being territorial

Is that your son? He's a cutie I used to love jumping on the trampoline, too. In fact even took some lessons when I was in the third grade!! Like the bike pictures, as well. The photo thing is not working even with a guest pass, so I guess I will have to make it public in order for this site to accept it, but I really don't want to do that...only friends and family on Facebook, too. Since it is a picture of them, I respect their privacy...Oh well...maybe I'll remove that one, and find one with my dog!! Thanks for all the help

I dont have any kids at this point. Wouldnt mind but until I get a better hand on my dysfunction I've put some things on hold..Its my cousins kid. He wants to be a fighter and is always trying to beat me up, lol.

This one had all kinds of issues but I'd still rather deal with its headaches than the one I get from POTS

Heres some more bike pictures, if I wasnt buying a house I'd go buy another... Just not sure what...

CBR954

Graffitie RR

A bird flew over Bowsers head.

Bowser was mad that day, lol

Either extreme bugs me. Winter is the worst though. I think on top of the temp, the short days and long nights play a huge role.