Megan

Yay! Good luck to her!

Meg

Welcome to the forum!

Meg

So sorry you went through that! Hopefully you find someone who will listen to you better soon.

Meg

Is this just her temporary plan for you? (all of that rest) I could understand if she felt you needed recovery time, but most of us are encouraged to do as much as we can, as long as we know our limits. If walking that much only makes you feel a bit worn out and you can recover from it, I'm not sure why that is a bad thing. Maybe something to ask? Unless it's more than just POTS, I'm very confused as to why she wants you to rest so much!

Meg

PS-Welcome!

Well, I'm glad to know I'm not the only one so close to security...they notice when I get a hair cut!

Meg

I say POTS like it's a word. I usually have to say it all out, though, as doctors get confused and people often think I am talking about marijuana, which is definitely not the case.

Meg

Does your son go to Ohio Northern? (or maybe he's in high school, I guess I don't know) I wasn't aware that any one else at my school dealt with this. The disability office seems to think I'm an anomaly! If he wants to talk to someone in a similar position, I'd be willing to meet him. Let me know or PM me.

Meg

I don't take any herbal supplements, as they make me a bit nervous. If you do decide to try any, ask your doc about any side effects to watch out for, and good luck.

Meg

This is a regular occurrence for me, but I've never thought anything of it. It usually only lasts a few seconds, maybe a few minutes if I am suffering from a migraine.

Meg

I am so sorry she (and you!) are going through this. As awful as it is, my best advice is to continue to see doctors until you get an answer (you seem to already be doing this.) While I don't really know the differences between OH and POTS, my experience with having POTS has shown me that it can be entirely unpredictable sometimes. Also, if all of her MRI's etc look alright, would chiropractic care be useful? (I seem to be advocating this a lot lately...but it really helps me!) I don't fully understand your daughter's condition so I don't know if it would be dangerous, but it might be something to consider.

Meg

I guess this is a question more than a response, but I was diagnosed with ADHD by my former psychiatrist through a series of questions. Is this an accurate way to diagnose? (I'm not convinced that I have it, as the meds for it made me feel like I did have ADHD in an extreme way, and also because I think the POTS would explain all of it.)

So sorry you've had to deal with med reactions! Before my POTS diagnosis, I went through a ton of anti-psychotic meds through a psychiatrist whom I should probably not have stayed with as long as I did. I do have mild depression and anxiety, but who wouldn't have some anxiety when they have a disorder but everyone says they're a nutter? (I'm much better since being diagnosed, but Prozac is still a necessity for me.) I hope you get a combination of meds worked out. Don't rush; you want to be sure you know which med is giving you a problem if one does.

Meg

This may be slightly off topic, but is it true that for POTS it's good to take B-12 but best to avoid B-6?

I'm not taking B-12, but I hope you finding something that helps without too many side effects!

Meg

I have a similar reaction when I overheat. I doubt the dr could do much other than an IV if you were dehydrated. Overall a dr may have some tips, but if it was just the one time and you've been feeling well other than that episode (even if you're still recovering) I would blame the heat, but see your doc if it gets worse. I hope you start feeling better!

Meg

I go to school in Ada (about 20 minutes away)! I would love to join you if I find I have the time once school starts back. I would miss the first meeting, but could go to others. As the time gets closer, I'll ask you more about specifics. This is a great thing you're doing!

Meg

I'm so glad that SOMETHING went well for you!

Meg

I posted earlier, and then I realized that while I have no personal experience, I do know some about it. My sister has Lupus and has had a handful of ivig treatments. Different disorder, and they weren't all that helpful for whatever reason, but it can cause nausea and headache as side effects. My sister had to be put on morphine while getting the treatment for the pain, as well as nausea meds before and during. I don't know if these side effects happen for everyone, and I have a distant cousin who has benefited from the treatments. I just wanted to let you know that I had a bit of brain fog but I do actually know something! Good luck with it!

Meg

I take Cerefolin which helps immensely with brain fog. I don't know about generics, though.

I understand the ice thing!

Meg

I have no insight, but I did want to wish you luck if you decide to try the treatment.

Meg

I had soooooo many tests when I was at mayo that I don't remember most of them! It felt as though they took gallons of blood, but I can't offer any advice on this test. I do wish you luck, though.

Meg

Praying that you find an answer that is right for you.

And while I know you're sick of being told to leave and don't want to worry your family, my guess is that they want you to be happy. As much as POTS takes over our lives, I hope that you can find a bit of your old self and not take the awfulness. Being stressed like that will only make things worse!

Meg

I'm so sorry! I am praying for you and hoping that tests give you answers and you start to feel better!

Meg

This happens to me often. I think it is a POTS thing. Maybe from blood pooling.

Meg

I'm so sorry to hear this news! You and your family are in my prayers.

Meg

I know that each patient is different, but I was told that I was VERY unlikely to have a heart attack. (I don't know if age makes a difference, I'm 20) I would definitely get a second opinion before doing something that extreme.

Meg

adorable!

Meg