Notgivinup

DISCOURAGED.

I just found some blood work from 3 yrs. ago. Noticed a doctor made a note of low C3 an C4 levels. Does anyone know what this could mean. It's never been checked out. Thanks.

I've never been tested for Lyme and we live in a heavily wooded are. I don't recall any tic bites. I did however find a tic or two on myself in the past. Probably about 3 yrs. ago. What are the early signs of lyme? I don't have joint pain, isn't that suppose to be a big sign? What were Mack's early symptoms? How is he feeling now?

I hear you when you say being polite to the doctor reinforces his/her behavior, but what else can we do? I mean if we're confronting, and question them too much, then they'll really get an attitude. Maybe even put a big red X on our charts, label us as "difficult" or something, and then we'll never be taken seriously. It's like we're stuck. Too nice gets us nowhere. Too opinionated or forceful? (can't think of the right word here, but you know what I mean) then we'd get pushed aside, as in, they won't want to deal with us "how dare we know stuff patients." I wish we had a doctor on here we could ask questions. I wonder if any of the good guys or girl PoTS doctors would volunteer some time to come on here. I know they'd get swamped, but sure could help us out.

I think stress has a huge, huge impact on this condition. At least for me it does. Anxiety especially. The more anxiety, the faster the heart rate, the less I eat, or drink, the more orthostatic, it's just one big vicious cycle.

Hi everyone. I'm feeling a little better today. Just needed a day to rest from the emotional trauma I felt yesterday. Thank you all so much for the kind words and hugs, and understanding. It meant so much to me to know you all understood, and were angry with me. This group is invaluable. We've all been thru so much, and I'm so grateful we can be here for each other. I'm just going to pick up the pieces and go on. I might stay away from doctors for a little while, but I'm never GIVING UP. And it's because of all of you that I can do that. What the doctors take away from us, we get back here on this forum.

I got a dx. of depression. So it went about as good or bad as I expected. At least he was nice to me. I don't have any neurological disease. He noted my b/p drop and hr increase. Ok, it's been almost 3.5 yrs. now. I'll take depression, anxiety, whatever label you want to give me. Give me whatever meds. you want. And then I'll be able to go to the park on a 80 degree day. Then I'll be able to stand up without my heart racing. Then I'll be able to take my 5 yr. old to play dates and talk to the other moms without brain fog, and feeling like an idiot. Never mind my hypovolemia, small fiber neuropathy, endometriosis, IBS, all those things can be cured by an antidepressant. Forget that my POTS symptoms all started at a time in my life when I was the happiest and most grounded I'd ever been. Yes, I'll agree I AM depressed. I've spent the better half of the last 3 yrs. in my bedroom. Watched my life go by while others are taking their children to the zoo. Been to doc. after doc. But the good news is, it can all go away with one little pill. Never mind that I'm already on one. Must not be the right one. OK. Go. I'll be your guinea pig. Make me complacent. In the mean time I'm going to sleep.

Thanks everyone. Tachy, great pointers! I just don't have any new ideas of what to ask him to look for. One doc wanted me to get a cervical spine MRI, however my ins. wouldn't approve it so they just forgot about it. I guess he must of had something in mind, although he never told me what. I know when my neck hurts or is stiff,symptoms are worse. But my POTS didn't start with neck pain. It started with morning headaches, nausea etc. Those two just went away by themselves. Then the lightheaded brain fog, etc started being primary symptoms. I just remembered something, a lot of nights I would lie my head down to go to sleep and my head felt like a bowling ball on my neck, hmmm, just thinking out loud here. I wonder what that means. Would it seem too "pushy" to bring a print out of what causes POTS and/or what medicines help? Would this insult him? I'd hate to get off on a bad start.

Highlight the links address, copy and paste it into the link icon, under Fonts. Do you know how to copy and paste? People do it different ways, but I like to just use ctrl + c (for copy) and then crtl + v (for paste). Copy/ Paste Hope this is clear.

Cute, Potsgirl.

OH, Simmy your video is heart breaking. I'm so sorry you're having such a suck *** day!. More of us, ALL of us should do these videos to show how horrid this syndrome is! I'm so mad that we have to feel this way I could scream. Mine gets to about 150, I "think" that's pretty much the highest. And squatting does make it go down. Try to lie quietly for a while. Drink some more. Oh I don't know, who am I fooling, if I knew what worked I wouldn't be sick. BTW I noticed you're very thin. I am too, I'm 5'5" and about 102lbs. I wonder sometimes if we gain a little more weight would it help us. At least perhaps it would up our B/P a little. However I've had low B/P my whole life and never had AN problems. Just ranting here.

I have an appt. June 3 to see yet another new neuro. Honestly I don't even know if I should bother. I don't even know what to say to him that I haven't said a million times before. None of the meds ever work consistently on me. I'm functioning enough that I'm not in a wheel chair, or passing out. But I'm still miserable. You guys know what I mean. I mean I don't think I appear sick enough for anyone to care. They can't see what I feel inside. Any way this guy is 69 yrs. old, he's suppose to specialize in Neuromusculoskeletal Medicine and he's an OMM? Not even sure what that means. But I asked his secretary if he knew how to treat POTS, she called me the next day and said he'd never heard of it!! But I guess he's willing to see me, as they did not cancel my appt. I just don't know if it'll be another waste of a co-pay and time and energy. I'm soooo scared of just getting blown off, and leaving crying. Already did that with a rheumy, who refused to even look at me. (long frustrating story, worst appt. ever!). At this point I'm so confused, I know I have pretty classic POTS, small fiber neur. and I'm hypovolemic, but no one seems to want to find the underlying cause of it. I do. I really need your help guys. What should I ask him to test for? Oh, and I'm having trouble getting my blood work records. Why do they make it so hard/rhetorical.

Yes, I agree the kids can be a motivation. You have to do things even when your body is saying no way. I've done that too. I would of loved to have more kids, but the thought of doing what you're doing gives me a panic attack just thinking about it. Strapping all of them in the car, just getting them dressed and out the door, shoes, etc., fighting. Do they fight? How do you deal with it all? When I'm very POTSY I can't even stand up straight. My 5 yr.old can talk me in circles until I agree to whatever he wants because I'm too weak to fight. Do you have any secrets to share?

Awww, thanks Pat. It IS extremely frustrating....pulling my hair out too!

Lieze, I must tell you, I don't know how you survive at all, with 4 kids! I have one 5yr. old. Most days it's too much for me to just get HIM out, let alone 3 others. I'm not kidding, I don't/can't do grocery shopping anymore. I stopped taking him to pre-school. The teacher offered to pick him up, and bring him home. It was beginning to be a huge battle that I was/am too weak to handle. Today I had to take my mother for cataract surgery. She's all alone, and can't drive. It's been mid 80's all week. I thought I was feeling a bit better, but today proved I STILL HAVE POTS. I got weak, dizzy,ex- irritable & had to lie down at my mom's house after putting her eye drops in! This *****! I'm worse than my mother who's 20 yrs. older than me. But yesterday I cleaned the entire house and did laundry all day and felt fine. Of course I stayed in the air all day, AND didn't have to drag a whiny 5 yr. old to the eye doctor. But like you said you just never know what you can or cannot do. I'm still not recovered, my brain is foggy and I'm a little dizzy. Ugggggg, this *****.

Chocolate milk vs gatorade I found this. I'm really feeling more hydrated drinking this. Plus for me I'm way too thin. I need the extra fat. Also the protein.

Does Not seem to me you need to see a shrink. Only unless you need support. Then a counselor would do.

Lieze, yes I will watch my B/P with the magnesium. Mine has actually been very much up and down. I like the magnesium for muscle relaxation and helps if I have bowel trouble. The dreaded C.! Magnesium is great for that.

Hey Sophie thanks for the info regarding chocolate milk! I'm so sick of Gatorade. I will now add chocolate to my milk.

I wrote somewhere about getting a rowing machine yesterday. I too was surprised by my weak abdominals and upper body. But my legs are, and always have been strong.

It's funny because so many on here avoid dairy at all cost, and now with this natropathic doctor telling me to try to avoid it, it feels weird drinking it, but I've always loved cheese, milk etc. IDK, I guess we have to do what feels right for our bodies. This doctor isn't helping me much any way. He did order me some excellent magnesium and some 5HTP, which really does help with anger issues during PMS. However he's clueless about POTS.

tells me to stay away from dairy, but I notice my body seems to hold onto the liquid in milk better. Does anyone else drink a lot of milk? How does it work for you? I wonder why I seem to retain it better.

Count me in as someone who was definitely NOT deconditioned. Before POTS, I was happily running after my two year old, and before getting pregnant I was constantly on the go. Outside working in the yard, hiking, biking etc. I would also scream if a doctor tried to tell me my POTS was because of deconditioning!

I believe dreams are telling us something too. Before I knew I was preggo, I dreamed of cuddling a naked, warm infant on my lap. It wasn't even a dream really, just a quick visual, and feeling of pure love. I was asleep, and woke up and said.... wow, maybe I should take a pregnancy test. Sure enough I was 5 weeks pregnant. Just barely enough to register positive on HPT. I wish my dreams could tell me what is wrong with my body now.

When my POTS symptoms first started I was nauseous for almost a year. Zofran eventually took it away. Then one day I woke up with no nausea. Just like that it was gone. I still had/have all the other POTS symptoms.