misstraci

Thanks Bananas!!

I took it for three days and had really high blood pressure, extreme dizziness and just weird (bad) feelings. I'm not sure about the vasodilation/headaches. I hope you feel better

thanks everyone for writing!

I agree, if only a doctor could fill my shoes for a day!! and badhbt, my current PCP told me he's done all he can for me and that sometimes people just end up with things they have to learn to live with....... i'm looking for a new dr. I refuse to live like this, i can't do it.

awesome, glad you are getting the tests you want!! What and how is the blood volume test done?

Awesome news!!! that should alleviate some anxiety!!

Thank you for writing, it means a lot! Glad your wife is doing so well and awesome about the marathon, how exciting!!

Thank you guys for responding and "getting it". I'm sorry you feel crappy too but at least we aren't alone, at least someone else understands.

BeBe....We could be POTsy twins, sounds like we have a lot of the same issues and concerns. My BP and HR are often normal when I check them despite how terrible that I feel, it's so weird. I'm sorry that you have to turn down things with your daughter and that her friends mom is doing the things you wish you could do with her. I feel like that too. My kids are a little younger but still. My daughter wants to do activities (gymnastics, softball or whatever) I can't drive, I can't take her to these things. I depend her father for so much already (and he dislikes being my caregiver/driver as it is) I'm not about to ask to drive me more places. As far as the homeopathic DR your friend suggested, I think that is a good idea. I just hate that those types charge so much and don't accept insurance. What your husband says is very true!! I try to take what I'm dealt and deal with it as best possible because thus far, nothing I've done has changed it which shows me, I am not in control over this Thank you..... Big hugs and well wishes to you too.

Naomi.....Sorry about your bad days here lately. Like you said, we understand and get it and all of that. (unfortunately) I really hope you start doing better. Thanks for writing.

Altruism...... We are so young, it's not fair, not at all and I keep questioning this whole thing, why why why Thank you for writing and I'm glad you understand and can relate. Keep trying your different meds, I hope you find a combo that helps. I hate taking drugs and I don't trust any or many of the DRs that i've been to for various reasons so i havent' taken anything recently. I want relief TODAY too. I can't help but think this is hormonal related. Not all but a majority of us are female and then in addition are also in the "childbearing" ages. Everytime i've had my "hormones" checked, I'm told they are normal. then how come that week before, during, and after my period intensifies things to no end. Things are SO much worse!!! not just a little or vague changes like I think some people believe but, for me, it's so much worse. Anyways, I'm rambling. This all started after my baby too. I think it's all related. Blah.

I hope you guys feel somewhat better today! Thanks for writing me, it means a lot

I just need to vent, and to my family, I am such a broken record, so, you all get to hear it this time!

I'm so over this, so sick of being sick. Nothing is helping, if anything, I'm getting worse. How can someone feel like they are going to pass out every single day for 3yrs straight and get no answers for it. I'd almost rather have some other terrible illness because at least I'd have a name for it and at least I'd have a fair fight to get better. Right now, It is "suggestive POTS" meaning my tilt table test was suggestive of POTS and vasovagal syncope. That's wonderful but that's not what's wrong with me, there is a root cause and I want to know it and why is it not showing up on any test. How can I feel so horrendous and yet blood work says i'm healthy, that's messed up. I'm spent countless time, money, and energy on doctors. I wouldn't know who to go to at this point or even what to say. It's almost like I've been around the world and now I'm back at the beginning.

I'm lightheaded, seizury head feeling, tachycardia, my vision goes in and out...... I feel like I'm having a heart attack a lot of times and god forbid I ever did, I'd probably just sit there and take it because I've trained myself that these feelings are "normal" for my mystery illness. I promise you if anyone I know felt like I feel, they would be up in the hospital or laid up in bed yet, I somehow manage to zombie through a day.....work, train, kids, take care of myself, pretty much everything but drive a car. I'm lucky to shower twice a week, I'm terrified of passing out in there. I walk around doing these things but feel like im in a different world, a bubble, behind glass, i can't explain it. I'm miserable. I'm jealous. I'm jealous of everyone else who is even half way healthy and can do normal things. All I want is to feel half way human enough to drive a car again. I want my life back.

So how did this begin, I'm not sure but I have a pretty good idea that it started after I had my son three years ago. I lost a lot of blood during delivery, something happened to my heart and i had tachycardia (120s at rest) that wouldn't go away, they gave me two transfusions and sent me home. After two episodes/ER visits of severe hemmoraghing and clots, I had surgery for placenta accreta (retained placenta). I was given iron supplements and that was that. This all happened from February to April and then in October is when I first "blacked out" and it has been down hill since. Prior to October we'd been visiting a nearby creek/trail, we went apple picking... so, did I get a tick and have lyme, is it related to my postpartum issues. Is this completely seperate of all things. Maybe I don't have POTS/dys at all, maybe it's just something similar with similar symptoms.

All I know is that I can not continue to live this way, it's almost inhumane in my opinion. I've been on ssri, snri and i forget what else. I'm sure my medical records list me as the crazy, hypochondriac patient and I've gotten the anxiety card from just about everyone I've seen. I also get the "you need to eat" comment, I can't help that I am tiny. Why does every little person have to be assumed as anorexic. I want to be taken seriously, I want more tests, I want answers, and I want to feel better waaaaaa waaaaaa waaaaaa......

low D

high ANA

seizure/migraine activity on EEG

nutcracker syndrome (left renal vein entrapment) on CT abdomen

tilt table

^{Thank You!}

Hi, hope you're doing ok.

1. I haven't officially checked my HR after I've been moving but it may reach a point and then level out or drop a bit after that initial transition from sit to stand and especially when the blood is flowing allowing more to the heart, the HR may come down a bit.

2. Sorry it's hard to find a doctor and about the anxieties. Whenever something "abnormal" happens to my body, be it whatever, I notice heightened anxiety. Especially dealing with my heart and HR. OR for example, if my arm feels numb or hurt all of sudden, more than likely its that i layed on it funny but in my mind, it automatically means heart attack or something terrible so, then kicks in my anxiety and then the HR goes up more, etc ,etc.

3. Definitely sounds like it could be POTS. Lots of things cause it. It could very well be a chemical imbalance of some sort.

Are you currently taking any meds at all? I know a lot of people swear by SSRIS (antidepressants/anxiety med) and that may help both your POTS and anxiety symptoms. It would be worth askign about once you find you a doctor. Sorry you aren't feeling the best.

oh Bananas, cool. I will go check that out.

Thanks Corina, that's good news!

OK people, give it to me............ I'm ready

I'm not sure if you can post here doctor names or need to send me a private message (rules, not sure). But I would really, really like a recommendation to a good physician in the Atlanta area. I honestly feel like I've seen so many people and I'm just really good at picking stinkers. I'm going in circles and feel like I'm back at step one again.

So, please, if you have a good general physician or cardiologist, neurologist, that you use or know of that you would highly recommend, please let me know. ALSO if you've seen some stinkers as well, give me a heads up of who not to go to.

I appreciate it.

Glad you went and they checked you and gave you an answer! So what exactly do you have and what caused it? And what's he doing as treatment. I try to always go with my gut instincts Glad your peepers were spared!

I'm not positive but I think so. I know there are tons of potential side effects and of course depending on the person is who gets what. I feel fortunate that I never experienced a lot of them, I was on 10mg. It's definitely possible for these things to occur at that low dose and so soon. It's foreign to your body and in addition, you may be sensitive to meds or this one specifically. I bet they will go away once your body becomes accustomed to the new chemicals. Hope you feel better.

My understanding is hyperpots is high blood pressure and the other more common pots gives you low blood pressure. I know there are other differences but i'm not sure of them.

Good luck, I haven't been to him (I'm in Atlanta) but let us know how your appointment goes!

Thanks for the link, I just printed but haven't read yet! Thanks

70s-80s

Yes, even if you don't have celiac, you could have gluten ataxia, gluten sensitivity/intolerance, etc. I suggest trying it, I am currently trying it myself. It's only been a few days so I can't tell a difference just yet. Like LMG says, still, don't waste the money on pre-packaged GF breads and such unless you really like sandwiches or something For me, I don't, but i do like burritos and so instead of flour shells, i switch to corn shells. there are lots of tricks and switches. I don't know very much but i know a lot of people on here do know, so hopefully they will write you as well.

I also want to know how long before most people started seeing positive results from their GF diet?

Good luck Jacquie!

haha ya'll are funny. no cardboard for me either. I've not tasted GF bread yet. This is my 4th or 5th try at GF because I'm not very strong willed, I plan on it this time though, I'll never know if it may help if I don't stick with it. I wanted to say that I tried quinoa pasta and the taste and texture were almost exactly like "regular" pasta. I recommend it highly. I did not like brown rice pasta or corn pasta, the corn pasta tasted really sweet and I didn't like it. Thanks Dizzy for the link to recipes

If I'm standing or walking and all of sudden feel a "wave" of lightheadedness and "on no, i feel like i'm going to pass out" comes over me, I have noticed myself leaning forward. Not my entire body in half but my neck leans forward and my upper body does slightly as well.

What does it mean that these actions kind of deter a bad situation? I was thinking maybe the act of me moving (moving forward) ups my BP all of sudden. Maybe it redirects blood flow to the right parts, or what do you think?

Ever since I read that article about gatorade that someone posted here I haven't brought myself to drink it. Hopefully nothing else I'm eating has hidden crap in it. I try and stay away from "processed" and boxed things anyways so, hopefully no other chemicals are being blindly taken

Yes, I have heard that as well. Lucky for me, I like mine dark!!! however, it may have something to do with the caffeine that makes me feel a little better here and there. or the feel good chemicals in it makes me happy for a minute and i forget i feel like garbage. Caffeine is hit or miss for me, sometimes it pushes my HR too high.