CarrieJessica

Don't give up. I thought it was all in my head and that I was just a wus for so many years. The doc who diagnosed me with TTT who "knew all about POTS" put me on a pretty standard POTS treatment, however it made me worse. I ended up in the hospital. He had no back treatment options and apparently wasn't will to research anything. I was ready to throw in the towel and was slipping into a depression. I then found out about a specialist (like your situation, very far from me). I am now receiving a treatment plan that although has to be constantly modified it works for me. Now I am not saying I am well but I am more manageable.

Hang in there!

Carrie

I didn't have any reaction but my mother had terrible migraine like headaches. She stopped for 2 weeks then started on an incredibly small dose and worked her way up to a dose that was helpful.

Good luck!

Do many of you suffer with gastroparesis?

I am getting tested next week and am wondering what to expect.

I know I can look it up online but I am more interested in what fellow Dysautonomia peeps have experienced after diagnosis of mild / moderate and sever gastroparesis.

Thanks

http://www.nydailynews.com/life-style/health/model-stand-fainting-article-1.1357417

Thought you'd like to see this. Media is always good!

I am currently using a power chair (manual pushed my BP and HR too high). I am in the hopes my insurance will help with the cost. I don't want to become deconditioned but am tired of not doing anything with my family.

another tribute to the great Bob Blogger

Took a screen shot, she will LOVE to know she's been shared and spoken so highly of. Awesome blogger!

I have 4 kiddos who are 4, 7, 10 and 18. I remember my husband signing my middle kids up for baseball and my eyes welled up with tears. I knew they wanted to play, they love it and are very good, but all I could hear was the frustration and disappointment from them when unavoidably my husband (Army) wouldn't be available and I couldn't get them where they needed to be.

Yes, I could ask for help and I am sure someone would, but 2 kids 3 practices a week at different times and locations. I just can't seem to ask that of someone when I can't really offer the same kind of help / support in return.

I wrote awhile ago (sorry, I know it always comes down to something I wrote) about parenting from the couch, I really did get great feedback between the blog, FB page and messages. Some new ideas were for my hubs to help set up a scavanger hunt (easy for my 4 year old). She had a "list" to check off. A water bottle, a grab bag of pretzels (these were for her snack) a few hours later it was time again, she looked for her favorite book and a specific stuffed animal (story time etc...) That one was particularly fun because she got excited when it was time to look for stuff again.

I plan on updating a new post with some of the great ideas people gave us.

http://justmildlymedicated.blogspot.com/2013/02/parenting-from-couch.html

I ended up with tendinitis after a morning stretch...

my doc said "like yoga?"

I said "No, like yawning"

So I am about to start on Adderall after a discussion with my Dysautonomia specialist about fatigue and brain fog. My specialist is very well known and I have brought my concerns about these meds up with him and he doesn't seem concerned.

I have PAF and IST/ISB (tachy and brady) and am nervous about taking it. Anyone taking it wants to share their experience?

Thanks

Do you all read Living with Bob (Dysautonomia)? Australian blogger who is currently blogging about her first go at IV therapy. http://bobisdysautonomia.blogspot.com/

I have "Long QT for rate" in my records.

WEGO Health gave a challenge for this, loved it! http://justmildlymedicated.blogspot.com/2013/04/a-letter-to-dysautonomia-wego-health.html

could be your ciliary muscle, its controlled by ANS. Its what makes you focus near and far and back again without issue. Something like applying make up, where you're looking up-close, then further away again may be causing this spam. My eyes do this and get red and over worked. I wrote about it here http://justmildlymedicated.blogspot.com/2012/12/retraining-my-eyes-mfbf-monocular.html Might not be it at all but worth bringing up at the eye doctor.

yes for me but I have found I can do a recumbent bike and pilates and stay in a normal range.

LOVE THIS! I am doing a 30 day blog challenge and one of the prompts later this month is a letter to your future self or your illness. I look forward to getting some things off my chest to ole dysautonomia...

This site obviously as well as http://www.dysautonomiasos.com/ too

I was told 64 to 74 oz of water and I actually just called my doc because of all my salt confusion. Getting a definition of salt loading was driving me insane. I wrote about salt loading here http://justmildlymedicated.blogspot.com/2013/03/dysautonomia-and-salt-loading.html but I shoot for 7 to 8 grams of salt a day. Especially on 'bad' days.

great!

My blog has been a sanity saver!

http://justmildlymedicated.blogspot.com/

Everyone covered my first thoughts.

I wish I had started taking potassium as soon as I started Florinef, or discussed having it monitored.

I wish I had asked for all records (labs, follow up as well as tests) as I went instead of having a heap of papers at one time to organize a year later.

I wish I had found the awesome bloggers right away (yes I am plugging my own too)

http://justmildlymedicated.blogspot.com/

http://bobisdysautonomia.blogspot.com/

http://dysautonomiac.com/

I am sure there are more out there.

Does anyone have some info on why some people with dysautonomia have convulsions? It happens to me after a busy few days. This weekend was fun and busy (I felt kind of normal leaving the house) We went shopping, a birthday party and out to dinner (not in a row) Than last night I got up to get a drink and my arm started twitching then it went down my back and abdominal area.

I am conscious and can talk (as long as my face doesn't get too tight) and if it isn't too bad I can even walk slowly to get to a place to sit down.

Thanks,

Carrie

I read and write... and spend too much time on facebook!

Just blogged about parenting from the couch, http://justmildlymedicated.blogspot.com/2013/02/parenting-from-couch.html

How do you overcome parenting when standing makes you dizzy?