Notgivinup

Turmeric, turmeric, turmeric.....why do I keep forgetting thee. I *think* I first started to feel better after a couple weeks on it. But, I added in antihistamines sooooo, I don't know for sure what did what. ****. Must.remember.to.start.one.new.medication.at.a.time. I'm going to add it back in. I have the hyper POTS. My nori was 980 standing. I've been feeling very anxious lately.

I'm so sorry. I understand totally, I do. I wish there was something I could say to make it better. Devastated an disgusted, with your body. I know me too. Although I feel better than I did. This crap has been with me 3 years now. Hard to plan anything. Hard to raise a 5 year old. Just try to keep up with other moms who are half your age and NOT sick. It's an impossible task. Not that I should even try. But I feel as though I'm somehow letting him down if I don't do all these things like the other moms. Again I'm so sorry. ****hugs****. Let's hope for a better new year. You never know a cure may be just around the corner. Or at least a better understanding of this ****. And proper treatments.

I know you already tried this but I have to say zofran helped my daily nausea (mornings mostly). Then, out of the blue, for no reason I can think of my nausea vanished, gone. This autonomic stuff is so weird. It twists and morphs into different versions of itself. But I just wanted you to know it could just vanish one day, like mine.

I am so sick of going to the gyn. to get my hormones checked, and everything comes back NORMAL, perfect. I'm 46 years old. I have terrible stomach pain with my period. I have major emotional swings right before, and before ovulation. I KNOW my hormones are messed up. But no doctor has ever been able to "catch" what is going on. It is soooo frustrating. I have also never been on any type of birth control. I bought progesterone cream. I just don't know how or when to use it. Something is out of whack and I don't know what!

I was told I had the H- form of POTS. My norepinephrine was 987-ish., can't recall exact number now. I tried adderall. I liked it, but after about a week or so I started getting tight muscles in my neck and shoulders. And I had lots of big knots. One of the side effects could be muscle tightness. Although when I told my GP about this, he acted surprised. Like he'd never heard of that before. I wish I could of taken it though, it did help with energy. It did not, however seem to help my brain fog at all. Strange.

Wow, sure wish I could understand more of this conversation. I don't think even my non-POTS brain could grasp what you guys know. I think you guys may be the ones to figure this stuff out. I wish you could all work right along side Grubbs, Stewart, and the others. I'm sure they'd benefit enormously from your input & ideas/thoughts.

My thoughts exactly!!

Fire, too funny. I wish I would have said something like that. What I did say was, (in a somewhat harsh voice I'm sure)" I am NOT depressed, I am distressed". To which he had no reply. I paid my co-pay & left. It really did make me feel like I was crazy. I started thinking to myself, maybe there aren't any spots. No. Wait. I'm not crazy. Beverly at doctor Grubbs office saw them, she acknowledged them, she just couldn't say what they were. She is not a dermatologist. Unfortunately this has made me very reluctant to see another doctor. You only have so much energy, time and money for co-pays. Not to mention, the possibility of being made to feel like that again, or worse.

I know. I even took pictures of them with my camera to compare. I wish i could upload them for you guys to see. They sure look like em to me. But the other weird thing was IF he didn't think they were UP why didn't he just say so?

A week or so ago. I wanted him to check the spots/marks on my back that have been there for three years. (the same amount of time I've been sick). Anyway they look like UP to me. I've compared them to pictures on the internet derm. sites. Do you know what he said to me after he looked at them. He sat down in his chair and the first thing he said to me was...."how depressed are you?" ***? !?!! He wouldn't even do a scraping to see if they were mast cell related (contained histamine). I asked him, he mumbled something about not wanting to send me down that path. Seriously?!!! I was furious. I left. Ugggggg.

Hi dani, I would not worry at all. You're baby will be fine. The baby takes everything it needs from you. You may feel like crap, but he/she will be ok. Don't stress. Enjoy your pregnancy. I did not enjoy my pregnancy, I was so worried about everything that "could" go wrong. Nothing did. He was born 40 weeks 9lbs-11oz. Perfect.

Hi everyone! Just wanted to give a real quick update. (I should be sleeping). Been feeling so so. Some good days some not so good. So very hard to explain my symptoms as they are so vague now. Fatigue has still been an issue for me. I'm still on the same antihistamines I described above. When at home I'm feeling pretty good I guess. Went X-mas shopping yesterday, only lasted an hour & a half. My legs started getting real heavy, & the brain fog & lightheadedness descended upon me. I do have some kind of infection going on. Went to ER a few nights ago. Thought I had a UTI. Negative for bacteria. But I had all the usual symptoms. Doc did a pelvic exam and took some tissue (like a pap). He said I have a pelvic infection! ***? Never had one of those before. He gave me a horrible antibiotic called flagyl. I.could.not.take.it. After 2 days I took myself off it. I still feel the bladder pressure, urgency etc. But I felt worse on the medicine. Soooo here I am, needing to go see another doc. for whatever I have. Procrastinating. Don't want to see another doc!!!! Ugggg. I know you all can relate. Brain fog is still with me. I can usually do ok, IF I'm alone in a nice quiet atmosphere. Once my 5 year old starts talking, I just lose all train of thought. Blank. Cannot concentrate or focus for the life of me. Well, I guess that's about it. I have not checked my b/p or h/r for over a month I think. Just doesn't matter. What matters is how I feel. Sorry this ended up being so long. I see Dr. Grubbs in Feb. I'll keep you guys updated.

Thank you so much Erik for that detailed review. Sounds good, like something I need. Not too much stimulation, and a little cognitive help.

Never mind I actually found it. It was Nancy Parker.

the little video clip which shows them looking in the mirror, with a healthy normal looking face, then she looks in the mirror again and her face turns green & sick looking. It says....This is how we look on the outside, & this is how we feel on the inside. I wanted to show this to a family member, does anyone have a link?

I'd have to say I'm a very sleepy person. Love, love, love to sleep. I feel so good when I'm sleeping. I sleep well. I do take a neurontin for rls, before bed. I almost never want to wake up. Those first few moments upon waking, when I'm still lying in bed & stretching, I feel so good & normal. No pain, no dizziness, clear brain. Then I force myself up, and everything starts, if it's a bad POTS day. But to answer the question, I "think" I feel worse with more sleep. Probably a good 8 hrs. no more no less, would be the best.

Thanks, yes I'd love the link.

I need one!!! I'm in Youngstown Ohio.

Totally, as you said" insensitive and unprofessional." Idiots. Sorry, but that really pisses me off. And I'm sorry you had to go thru that. ****hugs****

Maisie, Last year at this time I had to go Christmas shopping for my little boy in one of those store scooters. (I was 44 yrs old). Today I took him to a play date at a Bounce Around. (giant blow up things you jump in). Lots of kids, lots of stimulation, horrible bright lights etc. I was fine. You are very young. You will most likely grow out of it. It will not always be the same. Even if you don't completely grow out of it, symptoms will get better. Like others have said. There is one thing about POTS you can depend on, it is NOT dependable. Sending you healing thoughts.

Thanks everyone! Erik, I did take my B/P & HR today. I didn't do the whole sitting, standing, lying. I just checked standing, once. I'll do the whole thing tomorrow. Anyway my B/P was pretty high 135/101. HR 105. But I felt fine. I took my 5 year old to a Bounce Around play date tonight, & when I got home I took it. Not sure if all the activity raised my B/P or not. I'll try again tomorrow when I'm calmer. I do have a tiny bit of chest pain right now, but nothing scary.

I'm sorry. I can't say anything better than what's already been said. Give the doctors all the pieces you can, and hopefully they can solve the puzzle. If after 3 years & not getting any better, I would want to go into the hosp. Scary, I know, but I'm sure you'll get some answers. ****hugs****

I don't know , but I had it too. Went as far as having a procedure done to stretch my throat out.(Can't remember what it was called right now). Doctor said I may need it done again, I am fine now. I think he called it a stricture? I believe for me it was all POTS, ans related, and the surgery was probably unnecessary. But anyway it was an easy procedure, with no pain.

Aww, I'm soooo glad I could do that for you. I had almost given up hope a few times. But I never stopped trying new things. One more thing I forgot to mention. I don't know if I believe this had/has anything to do with my recovery/remission, BUT, I'm going to tell you anyway. About 4 weeks ago, every night before I went to sleep I would visualize myself healthy. I would actually make myself see it. See myself running, playing with my son etc. Then I would, and still do, say to myself...."Everyday, in every way, I'm getting better & better." Sounds corny I know, but it made me smile to see myself feeling good. And it was better than focusing on the negative, which I had done for so long. I'm not suggesting this cured me by any means. But it didn't hurt to do. Hey athletes do it!

Erik, I will. Maybe even tomorrow. I haven't checked anything. I'm not sure why. I just put away my B/P cuff & said forget it. I guess I was "afraid" if things were way off, I'd stress myself into feeling sick. But I have been curious. Tomorrow I'll do it!