Yolaclover

I had a tetanus shot right after my pots started. Personally, I feel it did not "help" my situation.

Nothing helps me, I hate feeling like I'm at the mercy of my own body and have no way to control this. Maybe I need Diamox.

I think her research is compelling

And it also makes my EDS flags go up

whenever I see the eye I think of Myasthenia Gravis

Yes, I feel this way often and countless MRI/MRV/MRA studies have been useless. So annoying!!! So frustrating, at this point this is my only really bad symptoms, this and headaches that accompany it. Fortunately my neuro seems to still take me seriously. Good luck! I will keep you posted.

are way more supported by your Dr. than I am by mine. #1 he is taking you seriously!! He is listening to what you want to do. Guarantee a cure? I'd like that too, I have to kids, 5 and 4 yo. If I was referred to mayo by my Dr. I'd find some support from family or friends and go. If that is too far, maybe a similar place near home. Good luck!!!!

I'm glad they did this article, it's not a great description of POTs, better than most and it is great for parents to see this and recognize symptoms in their kids.

For me it is sulfa antibiotics, found out like 15 yrs ago, got some kind of rash all over my body

I just want to hug you because I don't have any good advice but I can see you really just want to take care of your kids and be happy. I know how that feels. Lots of great ideas here, keep us posted!!!

It took about months. I still don't know why I have it.

That's great Lieze, it's nice to know there are people out there to help! You are moving soon right? How are you handling that?

wow Lieze, I read your post last night. I wonder how you will do in your new place. How is it going applying for disability? I did it yesterday.

My biopsy had good villi and high T-cell lymphocytes , I am doing a stool sample now that I will give tomorrow and I did a DNA test. Still waiting to see what Dr. thinks, have to wait until results come in.

ok, I though the mood and temper was just my personality!!

Insomnia was always an issue for me.

the other stuff, yes, my bra size increased and my lower back always hurts, flank pain, etc, I just had an unrelated MRI for that area and all normal....sooooo, I blame florinef.

But my question is if florinef can cause mega headaches? Do you get that?

Thx!

C

at this point my BP has been pretty good with florinef, my bad days are punctuated by soul-crushing headaches and weird pressure and stiffness in my head and neck. I feel like I have something that has yet to be diagnosed, the florinef helped with fluid retention but there is an underlying thing that is not being addressed.

how long have you been in reemission so far? I actually reconnected with a friend on facebook who had POTs for 10 yrs and has been symptom and med free for two years. I guess anything is possible with this crazy illness. Good luck, would love to hear more about your experience

I lost about 24 lbs by the time I was diagnosed with POTs, I gained all back and more when I started florinef.

may have been caused by celiac, malabsorbtion/dehydration

Me too! I made gluten free meatballs tonight and homemade salsa.

Yes, I am trying to avoid anything my body might mistake for gluten. It is SO hard to do this, I was a total foodie.

Here is my photo

when I read this I thought, "omg, that is so me" But can this be reversed be adhering to a gluten free diet or is the damage permanent?

I just want to hug you, it is so hard to find a doctor who will work with us and help us try to feel better, so sorry you are going through this!

So, so frustarting, this is why i need a new Dr., my doctor, voted best in my county, says he can do nothing more for me, he won't even read about what POTs is!!! When I get my new ins. I'm getting a new one, are you in with me Lieze?

xxoxo