misstraci

I stay scared daily because it seems as though my symptoms never subside, they are always right there or there is a new one or a new strength of a symptom, etc. If only we could know the extent of our individual ailment and know for a fact that nothing bad were going to happen, I think I could have ease of mind. I'm scared of the unknown and the unknown is what is happening to my body. It feels like your heart drops, head spins, vision blacks out, hearing going, everything around you is fading out, I just think ... what in the world is happening, why does this keep happening, will this ever go away, is it really JUST "POTS" or is there more to it. I am scared of dying and leaving my family, I don't want to be forgotten or replaced, I don't want them to be burdened by the loss of me, no second income, etc etc. That is totally thinking negatively but it's true and I can't help but think these things when I feel as terrible as I do, so, yes, I think about those things as well.

cool on your diagnosis! This always makes you feel better even though it doesn't help the physical symptoms it's kind of a peace of mind thing.

sue... yes, very demeaning to be treated in such a way. Anti-depressants are definitely the "cure all", for those dr's who are done searching for you. I'm sorry to hear about your medical issues going on and that they denied your test. That stinks. I hope the expert you are talking about gets you in and seen and takes care of everything. naomi.... you explained it exactly. dizzy ......thank you. I know you feel my pain; what I'm going through. I hate for our symptoms to be shot down as if we are hypochondriacs, etc. Also, yes, he really said that about pulling over before I fainted :0 todd.....thanks. I'm definitely going to keep looking and searching and will give updates. I like your 95% 4% and 1% , very true! ihatebananas..... your story made me laugh!!!! I'm sorry they treated you that way

Thank you all so much for describing this to me! All of it sounds scary. Sorry for what you have experienced. I like hearing your stories though, I like learning about these things I'm interested in.

Katie... that stinks, I wouldn't want to see her now either. I will keeping looking for someone, I hope we both find someone good in the future! rubytuesday...... my goodness. So, at least I know it's not just me who gets the not so fun experiences. Where do you live at? Or what big cities are near by? We have tons of doctors here and I feel like I've seen my share but I just keep picking the stinkers. I think, especially since you already have something such as chiari, they should not decline the sitting mri or anything that could further look into the situation. None of this comes easy I suppose. I think you guys for writing and sharing your experiences with me, it makes me feel better. Peace to you all as well. And yes, only we know our bodies and I hate that no one believes what I tell them about it.

I haven't been to any doctor except once since being diagnosed with POTS/NCS back in May, so, my mom suggested her neurologist to me. I wanted to go because I've been feeling extra bad lately and for some reason I'm convinced something else is going on or causing all these horrid symptoms. My mom has been going to him for a really long time (she's had seven meningiomas) and I trusted her that it would be a good experience. I was super excited for the appointment. I was hoping for another opinion, some good suggestions, maybe a new idea as far as a treatment I could try, maybe a test or two to rule out other things, etc. I had all my symptoms written out, I found ways to describe the things I've been feeling and I wrote those out too, I wrote out my questions and concerns and I also had a folder full of previous records that were not in his hospital affiliated records. This was this past Friday afternoon......Right off the bat when he walked in, I could tell by his manner this was not going to be a good visit. He was cold and harsh, aka rude. He basically said that I had had plenty of tests and that whatever I had going on didn't seem neurological related. He looked at my list of symptoms I had wrote and listened as I described them to him and said "yep, classical syncope/pre-syncope, I don't know what to offer you, I'm not sure what you are wanting here." I told him how I am basically at the point where I can't drive because everytime I try now, I feel like I'm going to pass out or have a seizure or something. I even described it all to him and he said " Are you scared of driving?" and I say, no, not of driving itself but of passing out while I drive, so yes, I'm scared to drive. He says "Do you feel that you couldn't pull over to the side of the road in time.... before you passed out?" What the heck? Was he saying it was ok to drive feeling this way and to just make sure I make it to the side of the road before fainting, what as jerk. He is the third doctor who's said to me that" yes, you have a chronic illness and there really isn't much that can be done. Sometimes people just have to learn to live with their situation" So, in my mind I'm thinking....Am I seriously supposed to live the rest of my life feeling everyday as though I'm dying, um no, I refuse to live that way. He asked about the quality of my life and I told him how bad it ***** and he was just like, that's unfortunate, I wish it didn't have to be like that. So, long story short. It was a waste of my time and money. Got my hopes up once again and was let down once again. Back at zero as far as who to see and what to do for myself. It's just frustrating and discouraging as I know you all know. I just wanted to share my experience. Most of my experiences have been very similar to this for example the one doctor who told me he knew exactly what was going on "post-partum depression" and this was when my baby was one and half years old.......really?. I'm always treated in a very demeaning manner and as if I have an anxiety disorder, etc. He asked that as well, "Are you feeling depressed lately? Extra stress? Do you think it could be anxiety?" Ha..... I said I've never heard that one before.

Good news on the diagnosis' and the fact that the gluten free is helping, even if only a little bit. I'm happy for you and I hope you can get the prescription covered so it can help with all those GI symptoms. I wish you the best and hope things continue to improve for you!!!!!

I have a question if you don't mind me asking....What is involved in the exercise program they made for you? thanks

Awesome news! Best of luck with the treatment plan, like others said, give us updates along the way

good luck, can't wait to here how it goes!

Hey dani, it definitely can be. Since there are different types of seizures. The grand mal with the whole body jerk, etc. I forget the name but "staring off" is one type as well. It is scary. It happened to me with the kids at the park the other day and I was terrified that I was going to pass out, etc, etc.

Sorry for what you both experience. I think I've been having some, more of the stare and space out, I get "disoriented" and my head feels crazy. I was curious if any others had this and if it was before or after their dys diagnosis. thanks for sharing your stories with me

I wanted to know who has ever had a seizure and if this was a condition prior to dysautonomia or if it is related to your POTS, etc.

Me TOO! I have this "rocking" feeling yet it is not vertigo and I hate when someone tries to tell me it is. The room is not spinning, I AM. I also wish I knew a name to put on it.

Thank you! Just sneeking a peek at the link you provided, I can't wait to go back and read later!

I just saw your post, wish I'd seen it when you first put it here. I recently (this week) found out about pintrest and I've been having fun playing around with it, thanks!

thanks!

Thanks guys, I bought some and think I will try it.

Does anyone take the supplement CoQ10? I was just curious if this was on your own will or a doctor's suggestion? and if you've noticed any improvement or side effects? Just curious. Thanks

dizzy.... the theanine you speak of. Is it a safe supplement to take and besides the slow thinking, does it cause any other side effects? I haven't heard of it before but I'm very interested.

Libby, that's funny you saying the nerd in you likes the physics perspective of it. Congratulations on the new job!! I have to do elevators multiple times a day at work and it makes me very symptomatic. It makes my head full of pressure, lightheaded, etc. When I get off, I basically have to stand there for a minute to gain my composure. Never have known what causes this but I would like to know if anyone else can answer in.

Hi dizzydaze. sorry for what you are experiencing. I have the similar head rush, week, palpitation "spells" and I'm still not sure what to call it. I've just been saying, I'm lightheaded but someone told me that it could be an adrenaline surge. I'm not sure. I hope someone responds to you because I would also like to know more about your questions.

Oh Claire, I'm so sorry! I'm not sure if you have already but looked into an attorney becaues of their neglegence in your treatment. That could have been prevented but I'm happy that the worst didn't happen and that you are here and able to share your story with us!

Thank Liz!! I hope you don't get it bad too. I'll try the regular mucinex. I called the pharmacist but he said anything was fine to take and part of me feels like that is incorrect. I feel like I've heard you can't mix certain things with the lexapro.

I'm so sorry to hear about your experience. Congrats on the healthy baby and I'm happy that you are well and out of the hospital. What caused all the blood clots and PE's if you don't mind me asking? I don't have any wonderful suggestions for the reconditioning however. Of course just take small steps and know that they add up over time. Whatever you begin with, whether that be a timed "exercise" or one with repititions. First week do 5 minutes or 5 reps and then next week do 8 minutes or 8 reps, etc. Good luck!!!