McBlonde

Could this it anything to do with vestibular disorder?

http://vestibular.org/understanding-vestibular-disorder/symptoms

Holy Moly, Bren!!!! I am SO sorry!!!

Could it be an adrenaline dump because of the stress of the IV?

(BTW, I take Florinef & salt, too, and the last time I had to get an IV, I had to get up from the hospital bed and go pee twice in two hours!) I always wondered if everybody else did that, too?!

Elena, I thought you might find this interesting.... It's written by my neuroendocrinologist who also has his doctorate in pharmacy. He gave it to me when he checked my D3 years ago... It was very low.

http://www.goodhormonehealth.com/symptoms/VitaminD3.pdf

My doctor told me that the those lights, like the fluorescent ones in a grocery store or mall, blink very rapidly..so fast you can't even tell and that it stimulates our system and triggers adrenaline.

I think these are two good ones for a primary care physician:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/pdf/ipej060084-00.pdf

http://circ.ahajournals.org/content/117/21/2814.full#ref-4

Cardiologist with a special interest in dysautonomia

http://www.theheartbeatclinic.com/servicesoffered.php

Sorry you've had a bad day today, Alex!

Never for POTs.

Twice when I fainted & both of those times I was at a place where an ambulance was called by staff before I was awake & alert.(They couldn't get a BP on me either time) I tried to refuse the ambulance & just go home.

4 minutes and 45 seconds today and OMG! The top of my head and the back of my neck are now killing me!!

Has anybody heard from CarrieJessica since she got to Florida? Hope the appointment went well!

I fainted the first time when I was 3 years old, so I guess I was born with it.

I agree! The POTS Treatment Center will be able to see you with your symptoms at their worst. They would HAVE to be your best option as to what to do, right?

Also, one thing that makes me better or worse when I am traveling is where I a going..... I have no idea why, but my symptoms are always better on the coast in Florida. I can leave La. feeling at my worst and actually feel better by the time I get there. On the other hand, traveling back, I feel good, can breath deep, etc. in Florida, but the closer I get to home, the worse my symptoms become.

I don't know where you left from, but if you came from somewhere like the West Coast to the hot humidity of TX, I can see how that is a possibility of making your symptoms worse.

I hope the treatment center gives you an IV asap!

Nowwhat.. Those are classic symptoms of cerebral hypoperfusion. Some days I am like the girl in the movie "50 First Dates" MANY times when this first start, I could watch a movie that I had already seen and not remember how it ended! Yikes! I thought I was getting Alzheimer's or dementia, but my doctor explained to me that what was happening was that I was loosing about 20% of blood to my brain when the hypoperfusion happens and when this is happening, there is not enough blood which disrupts the transfer from short term to long term memory. This can show up some times as white matter on an MRI.

Oh my goodness! I am so sorry! Is your appointment with Dr. Suleman?

Those are really great descriptions! So.... I guess whatever that is happening to me when I sit is not abdominal pooling because my symptoms are first headache, then nausea, then ... I've got to lay down or I'm going to be sick... Maybe mine is cerebral hypoperfusion?

3 minutes and 45 seconds today!

When I sit in a recliner vs sitting up in bed, I become symptomatic after about 30 minutes. First, I get a headache and then I start feeling nauseated. It is my thought that this is cerebral hypoperfusion & then pooling in the abdomen.

Interesting! I'm very low in vitamin D3!

Well, I up to a big 2 minutes, lol! I've got a long way to go to catch y'all, but I'm going to give it a try!

Walked 14 minutes today. Slowly getting back to my goal of 30 minutes!

Good question! I have the same problem. It's not my HR rising... so I'm guessing it's cerebral hypoperfusion and blood pooling in my abdomen. If I could only sit! It's one of the things that REALLY limits what I do!

Thanks, Alan! So glad to hear that you got a lot better!!

After 12 years of this life changing disease, after traveling all over the US and spending thousands of dollars to get the "best" treatment" I'm pretty realistic. As one of those research doctors told me not long ago, "eventually, we will get there, but the research is so far away a this point, so not in your life time I'm afraid. The best we've got right now is trying to manage the symptoms." I think I will continue to have bad flares and then remissions. One day I would love to be able to sit normally again so I could go to a movie or eat at a restaurant...or my dream, to be able to read books again.

I walk. I started out last February walking one minute and gradually built up to 30 minutes a day, then had a crash in the horrible heat we are having....Started over and am back up to 10 minutes...I really have to force myself to do it gradually.

Me, too. Any kind of stressor.... a good stress or a bad stress can trigger an dump of adrenaline and then the cascading symptoms that follow.