Monstrosity

Seeing this thread makes me want to show it to my Neuro who specializes in Autonomic Dysfunction. According to him my breathing issues arent related to POTS... Its Anxiety.... Um yea... This is exactly why I'm debating on going to NY to see the Russian woman or perhaps the Mayo Clinic.

I didnt have bad Fatigue or breathing issues till I was on Steroids and then Propanalol right afterwards. I've gotten better and use Singulair but I'm still not where I was a year ago...

If you think you are having Shortness of Breath because of your Propanalol, there are Cardioselective Beta Blockers, and because I am asthmatic, I insisted on one that wouldn't affect my breathing. Channel blockers can also be tried by those with breathing problems, according to my sleep apnea doctor, Dr. Adams. At first I was on atenolol, but it was too short acting for me, and slowed my heart rate too much too quickly. I am now on Bystolic 5mg., which is working so much better for me now. I'm not as short of breath on this one.

I stopped taking the Propanalol a while back but the fatigue that came in is still lingering. My Neuro wants me to try Nanadolol (however you spell it) and my family doc had said Bystolic a while back... Once again decisions decisions...

As stated do whatever suits you best. BUT, I try to fight back as hard as I can to regain/sustain normality in my life. I think you should try to go. I do stuff sometimes and regret it and other times I'm glad I tried. Are your friends aware of your medical situation? Can you get a ride back home if need be (always have a plan B in line)?

If you let this condition control you it will...

My doctor wants to put me on a low dose of

Thanks, but I want to get it to show up here. How do I do it?!

hmm... did you copy the link and put it in the "image" icon? The code from Photobucket or whatever you use will look something like this http://i44.photobucket.com/albums/f8/Monstrosity80/DSC00397.jpg

and when you put it in the window it comes out like this:

Today my Chiro adjusted my whole spine. He said be prepared to be "Geeked Out". Yup the rest of the day I felt uncoordinated, brain was foggy, blood pressure was up and down... He said Sensory Overload probably will happen.

Never heard of this but a woman at a Natural store claimed Hawthorne did the same thing. (Never looked into if this was true or not)

I feel your pain.. No one should have to suffer though the daily struggles we encounter. Hopefully one of these doctors will have a major break through and figure out how to fix our issues.

Stay strong!

One of the other members on here sees Dr. Shields at Cleveland Clinic and she highly recommends him. Maybe you can find her threads with a search of his name. She had lots of good info to share.

huh... I will do that. I'm seeing two others from the Clinic and lets just say I'm not satisfied...

Thank you!

Seeing this thread makes me want to show it to my Neuro who specializes in Autonomic Dysfunction. According to him my breathing issues arent related to POTS... Its Anxiety.... Um yea... This is exactly why I'm debating on going to NY to see the Russian woman or perhaps the Mayo Clinic.

I didnt have bad Fatigue or breathing issues till I was on Steroids and then Propanalol right afterwards. I've gotten better and use Singulair but I'm still not where I was a year ago...

How do you post these pictures? Looks like you are very active...my husband has a Moto Guzzi motorcycle, by the way. I used to ride dirt bikes when I was a teenager. My parents would have died, it they knew. I love riding...I also was on swim team when I was a teen, was a lifeguard, and am certified in scuba diving; I also was a dancer, and finally learned to ride horses, as an adult....although every chance I got when I was younger, I was on the back of one!! I also love to snow ski...even went mountain climbing once!! I've had a full life, and am a very joyful person, but I've slowed down a bit. I am still able to sing in the choir; I love to sing!!

To post the pics you need to use a hosting site. I use Photobucket. Then once you copy the pic using your tool bar starting with the "B" (for bold) count over 11 spaces. You will see a box with something in it (to small to tell). Click that and it will give you a window to put the picture link in.

Motorcycles are a blast but very dangerous... I've scene some bad stuff happen on the street and am thankful I was never injured badly... Moto Guzzi makes some cool sport touring bikes. Do you ride on it with your hubby? Dirt bikes are a blast I'm just afraid to hit the jumps!

I try to stay as active as possible. The past 4 months have been the hardest I've endured yet but I plan on trying to do all the things I did last year. Standing still is harder than being in motion...

Here's another great memory. My aunt and uncle took us on vacation to Kiowa SC. It was the best vacation I've ever been on. I found this goofy bat at a local store and these weird half balls and had to buy them. The funny thing was I felt so good while on vacation... Every day I would get up eat, head to the health club and work out, come back eat some protein, take a bike ride, and then swim in the pool. Were supposed to go back next year with them and I'm already looking forward to it. Just not the drive from Ohio...

monstrosity, i have that "feet" problem too. as if my feet don't understand they have to act differently on a different surface. it seems to me that messages from the brain don't come throuhg fast enough.

Sorry to say but I'm glad I'm not the only one! I noticed wearing slippers helps and even more so I have some flip flops with an air sole in them that I prefer to wear around the house.

Today while shaving my head I noticed my pupils took up majority of my eyes. My right one seemed a bit bigger than the left one. I see why many say they dread getting a haircut.

I also shave my head and have abnormal pupil sizes after a bad episode. Occurs in autoimmune autonomic gangliopathy.

I've never heard of that. What is it and how are you tested for it?

Thats great news, relief is relief... Weather it be for an hour or a day any improvement is nice! I had mine tested last year and it was low. I took a supplement but late last fall had stopped. Over the winter my fatigue was horrid and I'm slowly recovering. I'm going to have my doc recheck my levels.

I love swimming and going to the lake. My dad has a jet ski that I get to ride and tube behind. This without a doubt helped me get through last summer!

Out riding the day before elbow surgery

My son Heath was just married to Megan in February. It was a very happy occasion

Weddings are great! Family, friends, etc! My avi pic is from my cousins wedding last June. I was in the wedding and struggled standing still during the ceremony. Afterwards while sitting at the table I felt uncomfortable and just focused on my food and ate it quickly. After that all went well.

one of my cbrs

I've been struggling badly lately with letting my emotions get the best of me. Over the winter I was mainly just gloom and doom, now I'm mad at the world and want to beat it up... With that said I looked for a post that had happy memories or hobbies that people had and didnt find one. I'm going to post some pictures and please add to the thread.

I love motorcycles of all kinds and over the years I had 15 bikes. I also love cars/trucks too.

Of all the bikes I've owned this was one of my favorites, Triumph Speed Triple

thanks for your responses. i mainly wanted to know if you are placed in an enclosed machine. my dr. asked me if i were clausterphobic ... didn't know why, but i think he was referring to the vestibular testing.

I checked my records and yes I did have that test done and no your not enclosed. I just had a balance test done last week. If you want any details let me know but I for warn you it was rough...

Wow! They are so cool! How big do they get and what do you feed them?

Thanks! They can get up to 2 feet long but that depends on the breed. Mine have all stayed around 18 inches or so and about half that is their tale. Food wise varies. Typically when they are babies you feed them crickets. As they mature you can stay with crickets, a variety of worms, and veggies. They are supposed to eat veggies all the time. You have to watch what veggies along with fruits you give them. You also must dust everything they eat with a calcium powder. They are very easily vitamin deprived since they arent in the deserts of Australia getting sun. Proper lighting is a must for them.

Today while shaving my head I noticed my pupils took up majority of my eyes. My right one seemed a bit bigger than the left one. I see why many say they dread getting a haircut.

Does anyone have a recommendation? I'm beyond irritated with my current one and he's supposed to specialize in Autonomic Dysfunction.

In this video the one guy is a doc in Florida I believe.

Love these pictures...I love all kinds of animals...even let my sons bring an eastern scarlet snake in my house to take a picture years ago!! Great names, btw

Your a brave woman! I'm terrified of snakes... I could never own something so moody either.

Love these. I used to work for a vet who saw reptiles and I learned so much. They are great. Very cool animals and I admire owners who feed and house these guys properly because they really thrive! I don't have any because hubby isn't into it, but I would if I could.

They do require special care thats for sure. Ours are so spoiled that if they ever got away they would run back home due to they wouldnt get hand fed (fiance does this) nor would they have pillows or my bed to sleep in...