misstraci

thank you all for your responses!

I like it!! So, does this watch require the chest band to be worn?

Just went to the pharmacy to pick up my prescription for midodrine. The pharmacist had never heard of it and had no idea what to tell me. I want to know (and sorry because I think someone asked this recently but I couldn't find it), can midodrine be taken on an as needed basis? Can you still take it and sit a lot? What else should I know?

good idea for a thread tinks

I've had an awful past two days to be quite honest. I sometimes look at myself and think, "wow, I'm a strong individual". I don't think I know many people who would walk around feeling the way I do. Most go home to bed with the sniffles so, Oh my goodness, what if they had all day pre-syncope?! Not that I want to be out and about feeling like this but I have no choice, I have to work.

I went for that Bowen therapy on Wednesday and now I don't know if this extra bad feeling that i'm feeling the past two days has something to do with that, with hormones or just a coincidence all together, eh.

Gotta keep pushing through!!!!

I don't really know the answer to your question but my experience has been this:

I went to the emergency room six times from October 2010-May2011 all because of feeling like i was about to pass out, etc. Since this is all new to me and prior to a "diagnosis", I was terrified and thought I was dying. Well, each time I was in the ER, I was treated very rudely, either like I was a child or a mental/hypochondriac patient. I felt it was very demeaning because I go in there scared to death and not knowing what's happening to my body and need help and I get sent home each time with someone telling me they think I have an anxiety issue. It's very upsetting. So, unless I absolutely have to, no more ER visits for me.

So, I went yesterday for a session of bowen therapy. It was an interesting experience. I don't feel remarkably better but I was told it's a gradual process that your nervous system works itself out and realigns itself over the course of several days. Make sure to drink lots of water (check, already do that) and do not do too much strenuous or extreme things (no heating pads, cold compress, heavy heavy lifting, no sitting for long periods, etc). Well, not sure if it will help at all but it was surely worth a try, I'll try anything to feel better

there's a condition called "Sphincter of Oddi", not sure if that is related or may be what's going on.

I enjoy the little things and the simple things that most take for granted. I am thankful on days when I'm able to drive and even walk around at work without feeling like I'm going to pass out.

I can eat as many chips as I want. I need the salt and the weight

songcanary..... you are funny I'd also like a "neatly wrapped explanation complete with a bow on top!"

I tend to have a higher low BP for example it can be 90/60 or 107/71 anywhere between there and I always feel miserable. I have no appointments set up for myself so, I can't ask these questions anytime soon but if you find out an answer to this question, I'd love to hear it as well.

I'm also very curious to hear everyone's opinion and experience with birth control/hormones because I think that has a lot of influence in my personal crappy feelings. I get so much worse at certain times of the month, it's miserable.

I'm sorry you've been feeling so bad lately. This heat is definitely not much help at all, I know! I can't believe your doctor left and no one told you about that. Hopefully someone else at that office who is knowledgable can see you instead. I have awful coping skills because I wish that exact thing you said, that someone could promise to me that "everything will be alright". Feel better!!!!!

yes, thank you for sharing!! She came up with a good concept.

I've never heard of those but I'd be interested in trying them. Did you say you ave you tried them or just happened to see them?

Thank you all for sharing with me !!!

I'm sorry if I am repeating a question that has been asked but I was curious about what midodrine does to the heartrate. I read that it can cause bradycardia and my SSRI says the same thing. Will the two of them together cause like a super low heartrate? Have you heard of this? and do you take midodrine as well as an SSRI?

jjbaker....how do you feel now?!

lieze.... that's cool about getting the chair massage at work. I also crave a back rub always. I've never been to a real place. I have my boyfriend rub my back before but he's not a big fan of that so,....

Man, I just wrote you this long message about how I can relate, etc but it got deleted. Basically, I just wanted to say that I'm sorry and I wish you to feel better. If only I had a dollar for everytime I was told I should see a psychologist or take some xanax or things of that nature, its very demeaning. I've had doctors tell me they've done all they can do for me. That to me, is giving up on the patient. Why do they have such disconcern? I don't know. It's lke everyone is in a rush, to get you in and out of their office. No one wants to dig deeper, to really listen and do everything imaginable to get you feeling half way human again.

Hi, I can't answer the pass out question but luckily I do not or have not actually passed out, I just have really, really bad pre-syncope. As for the compression hose, I wear them, the 30-40 strength and not everyday as I only have the one pair and couldn't possibly wash as often as needed. I find that they do help me a bit. And, I've never missed periods, became more heavy or less but I get really "sick" when hormonal levels change.

Lieze.... did you feel differently after you tried it on yourself ?

jjbaker..... thanks for your response. How ironic! I am really thinking about it now. Was that your first time trying it or how many times have you done it?, i know you said your mom and grandmother both have as well. Now I'm all excited. What area do you live? I looked up people in my area and I can only find a few.

THanks

Traci

Having just recently started a topic about caffeine, I was glad to see this thread re-appear. I never think to use the search option and look through older posts. I just read this entire four pages. Thanks everyone for your stories, opinions, links, etc. It's good to learn different views that you all have and learn from your persepectives.

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