CarrieJessica

I have a hard time with yoga poses but Pilates has been amazing for me!

I just launched a new blog separate from my family blog. It will cover some dysautonomia but over all its will be a (hopefully) hilarious account of a woman as a wife and mother getting by. As of today it is a few posts but some really funny stuff is on the way! I have a Facebook page as well with the same name "Just Mildly Medicated" http://justmildlymed...d.blogspot.com/

I know you said HR BP and such were normal but you don't know what they were right before. For me I have 2 types of episodes like this. One high one low. When my BP drops too fast (can be from top of normal to bottom of normal its more about the difference between) I get lethargic and heavy, its like my face could be falling, my eyes water and lifting my hand to do anything about is too much effort. I have also had mild convulsions. When my HR goes up I am all tachy, sweaty and panicked Again I can be in a normal range it just has to do with how far the jump was.

http://boonefamilyupdates.blogspot.com/2012/09/pacemaker-implantable-cardioverter.html

I am all over as well. When I went to see Randy in Pensacola we did a poor mans TTT 3 different times throughout my visit and I had completely different reactions each time. Only one did my HR get potsie, then one my BP dropped more than 20/10 the last it shot way up. I said "what do I have?" He said "Dysautonomia". I finally relaxed a little about trying to find one word for me. Beta Blockers after one year dint work for me. They gave me more bradycardia and lessened tachycardia, but brady isn't fun either. The theory too was I was passing out more often because my HR couldn't do its "normal" jump to compensate for my drop in BP.

Anyone have convulsions and know why? I know I have seen tremors and convulsions listed as symptoms, its a new one for me and I don't get why. They seem to happen randomly (sitting, standing etc...)

I have been surprised at the number of casual friends who have responded so well, very supportive and curious. I even had a gal message me and say when we were neighbors (Army wives, we move a lot) she thought I didn't like her because I skipped on invites or left early and never seemed 'happy to be there' I was able to tell her I wanted to be there and be there more it was just so hard.

so glad you answered them too. It was therapeutic for me to really put it in words at one time. I plan to Blog more often about 'life like this' so if you'd like you can follow or join or whatever it says. I try and keep it funny sometimes too.

It's been good for me. I am an Army wife so I am not surrounded by friends and family, its new people every 2 years. It gets so hard meeting new people and getting to know each other and never knowing how or when to say what. For me I have syncope as well as convulsions so it's not really an option to just not tell. Sooner or later people around me will see. Now I feel like its out there and off of me a bit. Now I am not a status updates about health kind of gal. I prefer amusing and entertaining to heart rate and blood pressure updates

Kind of nervous for some reason. I did it with the 30 Things You Might Not Know About Me for Invisible Illness Week. I guess now I wait and see if anyone reads it and what the response is. Here is what I shared a link to: http://boonefamilyupdates.blogspot.com/2012/08/30-things-you-might-not-know-about-me.html

Just 'came out' on Facebook with the 30 Things About Me ... http://boonefamilyupdates.blogspot.com/2012/08/30-things-you-might-not-know-about-me.html Yikes, for some reason I am nervous...

This sounds braggy but I think we should share the good with the bad. I started on a recumbent bike doing about 15 minutes and never looking at the miles. 2 months later I am doing 10 to 12 miles in an hour and a half. Slowly building it up and pedaling even on bad days, for me it became minimum 4 miles, helped. I also took a reform Pilates class and signed up to do it several more times. The owner is a ret RN and the instructor is a working RN, they have been perfect! I cannot do any upright or out doors workouts without being symptomatic, not even moderate walks.

I am crashing after sweets and carbs, its very similar to when I had gestational diabetes so I will eventually go to the doc about it but I do think it could just be really hard for my body to digest some things.

My mother called today and has an appointment Oct 1, they had a few earlier. He only poor man TTT me and from what I have heard that standard for him. He is VERY laid back but knowledgeable. He also suffers from dysautonomia so if he has an episode your appointment may be pushed back a day, mine was.

how did y'all find each other on FB?

it was 14 hours for us. my hubby and I packed up the 3 youngest kids and it took us 2 days to get there. we met my parents in Pcola. I think knowing I was going to see Dr T and that my parents would be there to help got me through it. I mostly had lots of arms and legs tingling but being in a car is okay for me because I am sitting (I think). I had to be careful when we stopped that I got up super slowly.

under docs order my beta and I are breaking up, its rather slow but all and all its over The obvious is meet with your doc and let him or her know whats going on. For me it took away my hearts ability for compensation from my BP rise and falls and made me pass out more often. New treatment plan time.

and I did manage to have fun while we were there http://boonefamilyupdates.blogspot.com/2012/08/metal-chickens-really-do-make-for-best.html

On an afterthought. It was so nice to be talked to and not treated like a science experiment.

Just got home and it went really well! Dr T or Randy as he prefers to be called, was great! We (hubby, myself and Dr T) say very comfortably an went over my history in great detail and he read the records I brought. Most of the general dysautonomia info was confirmation on what I have read. The benefit came when he explained ME. I am always trying to figure out do I have POTS, OI, IST yadda yadda. I want a specific clear diagnosis. He was able to get me to relax on that. I have dysautonomia, for me that means all of it. Sometimes my BP shots up, sometimes my BP drops, others my HR jumps up and again sometimes my HR is way too slow. Both my sympathetic and parasympathetic nervous systems react irregularly and in a strong way. When I said 'okay I will relax on the specifics... but if you had to give me a specific what would you say' (he laughed) he said acute Orthostatic Intolerance and or a Pure Autonomic Failure. He did make some pretty big changes to my meds and sent the records from my appointment into my neurologist here in Columbia, Mo. I will have a phone follow up with him in about 3 weeks to make sure I am doing okay on the meds, following up with docs here and will see Randy in 6 to 12 months. I was prepared to pay for the appointment because my insurance, which is one he takes, but didn't approve me because it was so far out of network. Randy said no sweat, they would try and process it and let me know.

http://www.goodreads.com/ my email is carriejessica_boone@yahoo (dot) com I am pretty sure thats how you add people, anyway its a great source for reading! I read soo much, I love the escape since I no longer volunteer as much as I used to. Some of my more recent favs: Let's Pretend This Never Happened by Jennifer Lawson (not if you are offended by the F word) When She Woke by Jordan Hillary Art of Racing in the Rain is AWESOME you might also like A Dogs Purpose by Bruce Cameron Perfect Match by Jodi Picolt

Missourians! I am in Columbia, right smack between you two! My husband is working at Mizzou. Kelly, thank you for such great insight. Wouldn't you know he takes me insurance but they wouldn't approve me because there are "plenty of doc in my state that could treat me". So I am paying out of pocket but feel its so worth it. They told me it will be a 3 hour appointment so I am bringing my hubby, water, paper and pen! If all goes as planned we will be done at lunch time and Jerry's it is!

you all just made me laugh out loud! My mother has dysautonomia but I never heard her say POTS, so I called her and said "do you have POTS" no kidding she said "I haven't done that in years and years there is no way I would have that in the house". Umm thanks mom I wasn't looking for pot though...

wow! I don't think it fits me but I sure hope this can help someone else!

watching now, it loaded for me!