misstraci

I'm not postive but I associated my POTS with post-pregnancy as it began a few months after giving birth or (so I think this is the cause). I know I do not have an endocrine abnormality, that is ruled out. I have a really high ANA count, does anyone else have this and does it mean autoimmune? and does anyone have the MCAD-mast cell, could you explain that to me please?!

Thanks

718mom

I feel just like you do!!! i'm lightheaded sitting, laying, standing, it doesn't matter. It drives me crazy and I get scared because I wonder if POTS is all it is or if there is something else, hmmm, I wish I knew the answers and I wish people in my everyday life/world understood how I feel; how awful it feels to feel this lightheaded feeling.

Thanks and sorry, i put this on the wrong board, i see. Well, I'm going to do one and when I do, I'll be sure to post my link!!!!

First of all, sorry to have posted many things here recently and I've only been a memeber a few days, I'm just excited I've never been a part of one of these.

Anyways, I've always debated starting a blog of my own to keep in touch with family and friends and just kind of talk about the kids, crafts, school, or life in general and now I can talk about POTS. Not in a negative way of course but in an informative way.

I just wanted to know if anyone here has a blog?! I sometimes read a few, one from a girl at work which I won't post here because she might get mad but here are the other two I read occasionaly.

http://tarynmaxwell.com/ (new mother of twins)

http://attic24.typepad.com/ (crochet blog)

Man lieze...... I just wrote you a huge reply and it got deleted

I was just basically saying that i know you mentioned corn and nuts but was it gluten as well?

You should try ensure or protein shakes. I make green smoothies and you can make them with spinach or kale, strawberries, bananas or actually any combonation of fruit you are able to eat. these are healthy and packed with lots of nutrients. What about rice and beans, they are a good combo to give a complete protein that will help add or retain muscle mass (weight). Grilled chicken (if you eat meat). Stir frys are yummy and you could just mix lots of various veggies with spices, olive oil, or soy sauce and throw over a bowl of rice. Baked potatoes seem like they would be good substance.

I really hope that you get to where you want to be, good luck with everything.

PS. chocolate and sweets, if you can have those, full of calories!! and delicious.

Thank you arizona girl. I will have to go back and look at her stuff and see if I can find the name of the doctor, good idea.

redoctober, thanks, that is good news, i hope your appt goes well and you will have to let me know what you think of the doctor. I will definately be looking into their center. B'ham isn't too far!

Thank you guys

I know there is a link within the website with names of doctors in the various states and areas but I wanted to know if anyone could suggest from personal experience or knowledge of any dysautonomia doctors in the South. I live in Georgia but I would travel if needed. Alabama, Florida, Tennessee??? Someone mentioned Vanderbilt and Mayo in Florida but do you know of anywhere in Georgia maybe???

I was talking to several different people at Emory this morning and I had to repeat myself multiple times because they didn't know what I was talking about.

Thanks

T

Thank you lotusflower!! Those are also very helpful recommendations. You guys are so kind.

I'm sorry you are and were feeling so awful. I get that pressure and awful feeling in the back of my head but its always one side (the left). It is so weird and scary! I often feel like "i'm dying". The worst is when I try to explain these feelings to a doctor or anyone for that matter, they kind of look at me retarted and turn their head sideways like a dog. It makes me look like the foolish one but there are true issues going on and no one understands. I would not know if it is a neuro or cardio issue but I'm personally thinking about going back to the neuro for my similar symptoms, maybe give them a try and see what they have to say!!! Feel better please

thanks godsgal and momtogiuliana!!

tablet, thanks, it's ok, I'm slow sometimes and I just didn't understand at the time what you meant but now it makes sense, thank you for explaining to me!!! I definitely have a load to lighten

sallysblooms, WOW!!! Thank you so much. That is a lot of information and I thank you so much, i need to re-read and take notes!

Thanks, good idea. I'll go back and search through other posts for the natural healing discussions.

What do you mean by "lightening the load"?

1. Are there any alternative medicine remedies for POTS/NCS or the autonomic nervous system such as aromatherapy, acpunture, herbs, etc. I've heard of something called Klosterfrau Melissengeist which is a German essential oil that is supposed to regulate the ANS. Has anyone ever tried any natural medicine and had a good experience?

2. I've noticed so many different sites/sellers, styles, etc of compression stockings. What are the best ones out there, what should I buy?

Thanks

You all are wonderful and so welcoming, I appreciate it!!! I am glad to know that I am not the only one who struggles most days, if not, everyday. Makes me feel so not alone.

Rachel, thank you, maybe going to Vanderbilt is the best option, I surely would like to meet with someone who knows what they are talking about unlike most of my recent experiences

718mom, that makes me feel good to know you also have felt those feelings, keep us posted about what happens with the neuro.

Thank you all, glad I found you!!!

Hi, I'm new too, welcome and hope you feel better!!!

Thank you both sallyblooms and tablet. It's nice to talk with you all and have something in common. Hopefully after awhile, I will also be convinced that this is it and just deal with it and stop thinking the worst. I actually already met one person in my area, she emailed me and was very nice.

Thanks guys, talk to you soon!

Thank you Jana!

I will go look over the information on the home page as well as look for the doctors near my area.

The pills I mentioned and I said it vaguely because I'm not sure they are actually used for what I have going on but long story short, I went to an urgent care clinic the weekend before I was diagnosed. The doctor got my hopes up. After explaining in detail everything I had been going through he said "I've got it, I know what's going on here" and he then "diagnosed" me with post partum depression. I was so upset. Yet another person making a fool of me. He told me to go see a psychiatrist and everything would improve. I started crying and felt like yelling at this man. So, he prescribed me cymbalta and klonopin for my "depression". I went home and, of course, in my heart, i know I do not have depression nor anxiety and definately not post partum depression. I decided to fill the pills because I felt what do I have to loose, maybe they would at least do something for me. I've tried everything, why not try these too. Well, I'm still taking them because I mentioned it to the cardiologist who performed my tilt table and explained POTS to me and he said that cymbalta was a type of vasoconstrictor and klonopin does something with the nervous system so try them out and see if they help. I would love to talk to an actual doctor though and get a combination of someting that is truly going to help in this situation.

Thank you for your response. I am happy to be a part of this community and look forward to talking with everyone else.

Traci

Hi everyone.

I have just joined your website and just (a week ago) been diagnosed with POTS/vasovagal syncope. I just wanted to introduce myself.

I'm Traci and live in Atlanta GA with husband, two kids, and a dog. Work fulltime (when possible). I've been struggling with my mystery illness for over six months and have been to every specialist imaginable with no concrete answers. Everyone had their own opinion as to why I am constantly lightheaded and feel like i'm going to pass out. Multiple people assumed I had nutritional deficiencies because I'm really little and almost everyone "diagnosed" me with anxiety/depression no matter how hard I tried to convince them I'm happy/content and it's not that. Finally last week, I got a concrete answer and it was that I have POTS and vasovagal syncope. I am still trying to figure it all out, I had never even heard of this before. Also, I'm not totally convinced that that is all that is going on with me because I am having other symptoms as well. I've tried to increase the water and salt like everyone says and I was put on some pills but I need to follow up with my primary care. I guess that's about it.

Nice to be here and to meet you all!!!! I have two quick questions, if you don't mind.

1. Is there a specialist that deals soley with this POTS condition?

2. Does anyone have weird head feelings such as pain, pressure, numb, weirdness in their head? I am convinced I have a brain tumor (no I'm not a hypochondriac either) but my MRI from about 9 months ago was fine and no one wants to do a repeat.

Thanks, talk to you soon