misstraci

oh my goodness. I've been looking for an answer as to why i black out on yawns, stretching, and elevators. I don't pass out completely but as close as you can get to not being completely unconscious. I have no idea why this happens and i asked my dr last week and someone came in the door at that moment and through the hustle and bustle, we never got back that topic. The only thing I can think of it that the blood flow and/or oxygen during these things is hindered for some reason or somehow. I hope you can get an answer on this, i'd love to know the science behind it. sorry that you started fainting again, i hope it gets better!

my progesterone is kinda low, not sure what it means though.

Seattle, I feel exactly like you do. I just feel like something else is going on and I also feel mine is heart related. I was going to have a nuclear stress test (didn't work out) but supposedly it is very informative and less invasive than a cardiac catherization, which is supposed to show any blockages, etc. Maybe you could ask about one of those.

What are superficial clots and how do you know you have them? Just curious b/c I've always suspected that I may be getting them as I have a lot of random bruises appear on my calves with no explation or recent run ins with walls, etc.

Thank you Joann and Angela!

So, I don't know who keeps up with who or what you remember I said before but I started going to a chiropractor two months ago, twice a week and my neck feels a little better but my back does not (my left middle back hurts really bad) and deep down I was hoping that "aligning my spine" may alleviate some POTS symptoms because I had read a book with lots of testimonials about various illness', I thought maybe I'd see some results as well. I have not!!! I went back to my cardiologist last week because I've been feeling extra terrible. She ordered a nuclear stress test and gave me a prescription for paxil (I haven't filled or taken it for personal reasons) well the night before the test (and the test was first thing the next morning) they left a message at my house to say it had to be cancelled. Long story short, my insurance won't cover it. They said the code the doctor put will not justify the test (lightheadedness, chest pain, tachycardia), what else do they want?! Haha. They said I could have an EKG stress test which I have coming up next week. I went to the neurologist this morning (someone new). He was nice but to the point. Undoubtedly confirmed I had POTS, gave some exercise suggestion, the typical, drink fluid, eat salt, wear stockings. Gave me a prescription again for lexapro, this time only 5mg. He did agree that he thinks something else is going on in addition to my POTS. He is going to redo my EEG that was abnormal before by another doctor to either confirm or toss out the seizure aspect. I mentioned lyme and mast cell. he basically laughed at both, arrrrrrg. So my question is aside from my update, do you ever feel like you're being punished or something?. My significant other is very helpful, always taking me where I need to go and I am beyond appreciative but he makes me feel like I'm such a chore, it's like such a terrible task he has to do (so it feels) to cart me around. I feel like I owe him a million apologies for being sick and all this but then I think to myself. This is not my fault, I don't owe anyone anything. If anyone should be feeling down and drab here, its me. I'm the one who lives day in and day out feeling like they are going to pass out and have a heart attack 24/7. I just get the vibe that I am no longer "significant other/lover/friend, etc". But that I am a sick person and he is the caregiver and gosh I can't do anything until you get well (this was actually said to me in other words). I just feel like I'm being punished. It's hard to explain.

Sorry I don't/didn't have any good questions but I'd like to know how your appointment went, let us know!!

I was prescribed 50,000iu a few months ago but I never took it because I was scared of having bad side effects. I read about it prior to taking (or not taking in my case) and it was saying diarrhea, stomach cramps, all this terrible stuff ( just like with any supplement or medication) and it said very high dose can calcify your arteries and that freaked me out, i'm sure it would have to be crazy high amounts and the doctor wouldn't prescribe if it could be that harmful but i've just been very reluctant to try. Maybe I/we should give it a try. Looks like it's helped several people. Mine has been low for the past several blood tests. In the 20s, so, borderline low I Think.

Hey, I think whenever someone in your vicinity signs up that you are sent an email with their name and email address (I've gotten several for Atlanta GA). I bet that doesn't account for people already on the board though. So, good question! Hope someone else can answer your question

Yay, glad you're doing so much better, thanks for the advice and inspiration!

Mine didn't start during pregnancy but after, several months after. I had a complicated delivery, lots of blood loss during and after. Retained placenta, d&c, etc. I think the trauma and stress on my body caused my dysautonomia/POTS. This is the only thing I can think of that could justify it, that is, if there isn't another underlying cause that I am still actively searching for. I think its' all hormonal related honestly!!!

Very good points made Rama, thank you! makes you really think about it.

Sorry for your rough time here lately but good news about the MRI, I hope things start looking up for you!

Thanks Corina, that does help, I just like to hear everyone's experiences!! I wonder why the generic would be different from the brandname, I thought they were required to have the same ingredients? Do they put additives in the generics or something? hmmmm

Thanks for all the responses. Peace, great detailed info, thank you!!! And yes, I have one scheduled for next Wednesday and I was prescribed the Paxil which I haven't started yet. I hate taking medicine, even tylenol. I'm scared of the adverse effects. Targs, Hopefully others chime in as well. Sorry you are having spaciness and appetite changes like you describe. I wonder if its the specific dose you're on or just the medicine in general. I hope it gets in your system and evens out and that the bad symptoms go away. Katybug, thank you. I know we're all different; our bodies and reactions. I like hearing from others though. If everyone says its terrible, I'm going to be a bit reluctant.

thanks bebe!

1. PAXIL: what is your experience with it? Good, bad, side effects, improvements, etc. 2. is a nuclear stress test the same thing as the treadmill/echo test? I had a "stress test" a few years ago and it was me walking on a treadmill and then evaluated with an echocardiogram, is nuclear the same thing?

bebe, I'm so sorry! I want off this ride too. How unfair to feel like this every single day of our lives. I've also been feeling very rough lately so I can completely understand. I don't have any good suggestions to help but I just wanted to say I'm sorry to hear about you not feeling well and I wish for you to improve.

Thanks for the explanation Angela, interesting, I haven't heard of that one either. boymommy3, thank you and sorry you're in the same boat, good luck with your mri, let us know when you get your results! runningwild.... what is PFO? I'm glad they did the tests and ruled out bad things on you too. I can't accept "just suggestive POTS" at this point, if I'm given multiple tests that confirm my heart is ok, I'll accept, but not right now, not with this quality of life (or lack there of) and I'm sure the anxiety associated with my symptoms and then my thoughts about my symptoms is not helping one bit !!

Thanks Angela. Glad everything was ok. What is EPS testing?

Thank again for the detailed response. I very glad that nothing was bad wrong in your findings. Of course I don't mind. I have an appointment tomorrow with my cardiologist and I want to possibly ask for one of these tests to clear my mind. I have had "suggestive POTS/dysautonomia" for three years now but its continually gotten worse. I'm unable to drive, I have no quality of life, I'm barely functioning in my opinion. The left side of my chest feels "full", heavy, tight, almost like something is in the inside pushing against my skin, kinda don't know how to describe it. This is a fairly new symptom to add to the mix, I've been noticing it for several weeks now. I have no idea what it could be, I hope its not my heart but that is all i can think it could be and of course I get really scared thinking, oh no..... all the terrible things it could be. I need someone to help ease my mind and tell me that my heart is ok. Because my body feels terrible and its very scary

Thank you, this information is very helpful to me. Thank you for the pros and cons that is exactly what I was looking for. So, if you don't mind me asking, what were the results of your tests? Was everything ok?

Just curious if anyone has ever had a cardiac CT or MRI? What was the test looking for for you? Thanks

Hi Aimes, welcome Nice to meet you. Sorry to hear about your story and being sick for so long, mine worsened or started after my second delivery as well. Glad you are able to eat now, gosh, I'd hate that part. And glad the zyrtec and zantac are helping some. What doses and how often are you taking them? I'm thinking about trying some as well. Well good luck with your next appointment, hope that it goes well. Traci

I don't have migraines but was just going to say that I have taken cymbalta without having side effects. It didn't help or hurt. I can't speak for the headaches though, just the medicine in general. Hope which ever that you try is helpful, feel better.