misstraci

I was researching about the autonomic nervous system and came across something called "bowen therapy". It is an alternative treatment for many ailments and supposedly helps many people. It was originated, I think it said, in Australia. Has anyone heard or this or tried it maybe?

I guess we are all so different. Our diagnosis, treatments, and all the things that help and hurt us. I am so glad that caffeine is helpful to a lot of you!!! Thanks again everyone for sharing your answers and stories with me.

redoctober..... yes, i guess there really is no one here in the atlanta area. i called around so many places and spoke to so many people who gave me the "huh?" like i was talking another language. my cardio at piedmont recommended another cardio/ep at piedmont who was suppose to know his stuff, Dr. Dan Dan but I just had a very unpleasant boring visit. I will have to go read your other post, thanks!!! volley9.... where do you live? I think Alabama is close for me but I'm not opposed to flying, traveling to get the best care. I have heard all good things about Dr. Grubb, i was even considering going to him as well. I guess my specific questions would be, because I've been "diagnosed" already and had the tilt table test but do they do further testing? do they just talk to you and prescribe drugs or do they dig deeper to see if other things are going on as well? That's kind of what I hope for, for where ever I end up. I don't want a boring talk visit, i want someone who will do labs, test, etc and help me to understand more.

Hey, congrats, that's awesome!!! Good luck with it!

Hi redoctober Well, I had a visit here in Atlanta on Monday with a Dr who "supposively" was very knowledgable about dysautonomia and I waited about six weeks to see him. The appointment was very disappointing. He was not the nicest person and seemed to have no new info, ideas, or insights for me. So, I feel like I still haven't had "the" appointment yet to discuss my condition. I was just wondering if the center in Alabama was very helpful, had polite doctors who did tests and took the time. What all do they do at your appointment? Thanks

Has anyone ever heard of or been to the autonomic/mitral valve prolapse center in Birmingham Alabama?

I've also wondered about the salt thing. I don't take salt tabs nor have I tried them but I tend to try and eat salty foods and salt my food. I can't tell a difference personally for example, today for lunch I had a can of chili that was filled with mega sodium and a bag of chips (healthy I know) but I still felt miserable afterwards

ramakentesh... Do you happen to know what exactly happens to the seritonin during hormonal times and also if you are on an SSRI, which also affects seritonin, what that means as well? Thanks

thanks all of you for writing. I had recently started on lexapro and although I feel no where near wonderful, I had definitely been telling a difference that I can stand and not feel like I'm going to pass out, well yesterday and today have been miserable, I feel like death and am so sad because I was excited about the new med and now I'm scared it's stopped working already and it's only been about 2-3 weeks of it. Anyways, thanks, maybe it's just hormones that are causing me to all of sudden feel extra worse again.

Does anyone feel worse or better around their period? (hopefully this isn't a TMI post) but I was just curious if this is a true story that females with dysautonmia/pots feel worse at different times during the "cycle"? Thanks

I also don't know what to say. You are all in my thoughts right now and so sorry for what you and your family are going through. I hope that it gets worked out and soon!!!

dani... I'm sorry. I can't seem to understand if it helps me or doesn't. I feel good at the moment but then sometimes later I feel crappy and yes I get the palpitations. volley9.... what about chocolate? you could eat that. and what is Spark? I don't think of heard of it. tearose, 718mom, KeXia... thanks guys!

thanks guys, you're the best!!!

thanks guys!!! I always like to compare my feelings to those of others just to see if our experiences are similar or what. BellaMia..... what does dark chocolate do? Thats my favorite thanks, you are all very helpful as always!!

I wanted to see what others' experience was with caffeine. Do you steer clear of it because it makes you feel worse or do you have some because it helps? I don't drink soda or coffee but I do eat quite a lot of chocolate and have some tea. I was wondering if these habits could potentially be harming me. More specifially, I've been having in my chest what feels like my heart doing flip flops and sumersaults. Not sure if this is related to the caffeine or an issue with my heart itself. Any ideas?

haha, kudos to me! I read your whole thing, it wasn't that long. Sorry for your being sick and not feeling well. I can't speak for the zoloft as I've never taken it but I just started lexapro and can already tell I feel a bit better. Don't get me wrong, I still feel bad but better I think. I don't know too much about the salt issue, I just tend to eat more salty snacks such as chips and pretzels and then salt my food. Some people take salt tablets and that may be helpful for you if you don't care for the actual salting of food. I should try vitamin water, I've never had it, I drink powerade a lot and maybe it's psychological but it helps for a minute. Good luck!

thank you all for the replies here. I enjoy reading them but I'm sorry you feel so cruddy, and me too. I wanted to hear what other go through and if it were similar to my own experiences.

If you don't mind me asking, what is MG?

Top 5 symptoms in order of worst with 1 being the worst. 1. lightheadedness (feeling like i'm going to pass out) 2. head weirdness/pressure 3. brain fog ? 4. trouble breathing 5. heart palpitations

yes, that has happened to me many times. my cortisol levels were low and they told me they were normal.

My MRI report said the following: "Mild increased signal in the scattered sulci bilaterally on FLAIR sequences, likely representing artifact." I was told everything came back normal and that's great but I was just curious what this statement meant. Whatever it is is "mild" but I can't figure out what it's talking about. Thanks

I am also interested in allergy meds. Could someone explain the difference between H1, H2, and antihistimine? I tried to look this up on my own prior to writing here but I just couldn't find and understand. Thank you

Sounds wonderful. So glad you all were able to get in next week instead of September and sounds good that they will keep her IF the tests being performed do not come back right. Good luck, let us know what happens!!

oh wow, that is scary because that sounds verbatum like what comes out of my mouth. I feel like i wrote that vent. I too was healthy until one day at work when i was walking and then nearly blacked out and dropped to the ground and since that day have been ill with all this and not being diagnosed for 8 months, i'm still not convinced with my diagnoses, even though it was confirmed. i love my family also but i hate living this way. if it weren't for my boyfriend and kids, i can't promise i wouldn't try and do something crazy. i always try to keep my head up and know that things have just got to get better and what if, as quickly as this crap hit me, it goes away just as quickly. like i wake up one day and feel wonderful from then on out. i don't know and don't know what to suggest to you as I am in the same boat. How about think happy thoughts, have faith, hope for the best, etc, etc. I hope you get to feeling better!!!!

lieze.... thank you for responding. i've never thought that it could be a migraine related kind of thing. I should look into treatment for that and maybe that could be my answer or I could try the hat thing. Thanks, i'm also glad the scan came back fine.