Tobiano

Exactly Rachel!! Every time I blinked or closed then opened my eyes they would be looking in a completely different direction. The person I was with said that sometimes one stayed focused in the middle and the other rolled. So strange.

Yup, this is sometimes how my 'bad' episodes start off - vision changes, tachy, pupils dialated, and other things. I try to get to a cooler place (even outside in the winter with no coat) and just sit on the floor/ground incase I faint. No fun Sorry this is happening.

Me too... well more that my skin is really hot. When this happens I generally feel that I'm overheating. The only thing that helps is ice packs.

If you find something that helps please let me know! I'm on digoxin, which seemed to help for a while but I don't think it's doing much any more.

Maybe that's the right word! A few weeks ago I had blood drawn. When I went to stand up after the nurse said my eyes were fluttering.

Looks great!! All the best with the training.

Someone caught a video of part of an episode today. It’s really, really strange to watch back after but I did notice some new things. I am wondering if this happens to anyone… When I’m starting to feel better, and my vision is starting to return, I actually tend to close my eyes. I open them for short moments but can’t seem to focus my eyes (they roll up and/or to the side). At this point, I remember that things are still a bit blurry and spinning. In my semi-loopy state apparently I told someone that she had 6 eyes today!! It really did look like it. Slightly embarrassing but it gave everyone a good laugh. Everyone knows I’m feeling much better one my eyes stay open and I can focus on people while they are talking to me. Does this happen to anyone else? Some days I just feel like my body has become so wacky.

I agree - get records from every doctor/clinic/test. It can be very helpful when going to a new doctor and helps to track your journey. I’m in Canada so fall under a different personal health information and privacy act. However, I find it extremely difficult to believe that the regulated health professionals you saw did not create records for your visits. There has to be something! Like others have said, I would put in a written request stating that you are requesting “all health records” from [date of visit] for [specific reason]. Hospitals should have a health data records department that can provide more information on the request process. There is often a release of information form to fill out as well. Good luck!!

tpapik - I sent you a message. Momtogiuliana - I think you may be onto something!!

I get 6 grams of salt through NaCl capsules. I can’t tolerate taking them whole so break them open and dissolve 2 at a time into a large water bottle. I also add a Nuun tablet to each water bottle for flavour. I have gotten so used to drinking my water this way that regular water now tastes really funny. I also salt all of my food. Soups, stews, and eggs hide salt really well. Also, tomato slices or granny smith apple pieces with salt are a great snack.

I did it for a while at the suggestion of the physician who did my TTT. It was difficult to tolerate but I thought it was worth a try.

Not quite as fun but this company has different colors... http://www.juzousa.com/product.aspx?menu1=Stockings&menu2=Fashion&product_class=SK&group_model=2000

Mine came with a sticker on the container that said to keep it in the fridge.

Thanks for sharing!

And so just when you think there cannot possibly be any more symptoms.... One night this week it felt like I had the worst UTI ever x10 - pressure wise (there were no other of the usual UTI symptoms). Just felt like I had to go extremely badly all the time. It was so uncomfortable that I started to tremor and feel extremely nauseous. Honestly, I almost went to the ER and I have a very high pain tolerance. It must have been a bladder spasm because it just went away after about 45 minutes. For those of you who experience this, have you found any triggers? It just seemed to happen out of nowhere. I'm trying to avoid anything that might trigger this again. It was so miserable.

Really - I'm in Canada!! I need to find this pharmacy!!!

I'm also interested to hear the positive effects it has had on you. My cardiologist things that this would be the best med for me. Unfortunately it's not available where I'm from. Sounds like it's helping with your heart rate.

I feel freezing when my heart rate drops however most of the time am overheating. Layers and a cooling vest seems to help me.

Yay! So glad to hear that it is helping.

Midodrine ,a vasoconstrictor, seems to have helped me somewhat with brain fog. The less blood pooling in my extremities, the happier my brain is! I definitely still have brain fog though. I’m also on other meds so it is difficult to decipher the effects of each one.

Peregrine - very well said!

Hi Dani, I am so sorry that this happened. You're right, these sorts of things are unfortunately out of your control. I'm finding that the unpredictability of this condition is one of the hardest things to deal with. Having to turn down things last minute makes me feel very guilty sometimes. I'm sure that you really wanted to watch her kids and would have done it in a heartbeat if you weren't feeling so darn crappy. I actually think that you showed a lot of insight by knowing your limits. I hope that things work out soon. Take care

I also have tremors, but these are more related to other triggers. My heat intolerance symptoms include nausea, blood pooling, visual disturbances, feeling light headed, fatigue, and decreased muscle tone. I often get overheated in rooms that are regular temperatures. I'm still wearing my spring coat and t-shirts this winter! A cooling vest seems to help.

I can relate. It’s hard to describe… spacey and dopey are the best words I can think of right now. I catch myself staring off into space at times. I feel like I am moving slowly and that the world around me is moving slowly as well. It takes me longer to process information e.g., I will read the same line over and over again. Sometimes I am slower to respond. E.g, I type meeting minutes . Because I have difficulty with multi-sensory processing, I digitally record the meetings and then type the minutes later. I remember listening to a recording of a meeting I attended during a massive brain fog episode and thinking… wow where was I??? I hardly contributed a thing, which is very unlike me. I hope you find some more brain fog relief soon. It can be very frustrating to experience.

Ahhh these stories make me want to scream! So sorry that you were treated that way. The doctor was very unprofessional and obviously had his facts mixed up. What a waste of time. Hope you can find someone more helpful.