Yolaclover

Thank you enko and Rach The thing that really gets me is when I was lying there in bed dying my BP was perfect!!! How? Why? what is going on? I took a shower, had a coffee, took meds, put some make up on. Feel better but still stumped by my wacky body. xxoxoxo

So, last night I had these issues, like I lie down and my head hurts, feel lightheaded, feel a sense of fullness in my head, particularly the lower back part of my head. Felt as if I was going to die, like the blood was not getting in my brain. It was so scary!!! It has happened from time to time in the past month or so. Is that a neuro issue or a cardio issue? I hate the vagueness of these symptoms!!!! I thought once I got back on the florinef that would go away, but no, it is not! I have been on the florinef for about 6 days. Also, since yesterday my left eyelid is all twitchy. I don't understand why my body was perfectly fine in December 2009 and then it just flipped a switch and became completely horrible. Ineed a good cry, this just *****. The worst part is my cardio swore I'd get better. I'm not getting better. Sorry, I can't cope with this today.

Hi Traci!!! I totally have and have had pain, pressure, numb, weirdness in their head. Ugh, it is horrible right??? I was totally convinced i had a brain tumor and I did have a brain MRI an MRA, an EEG and all were normal. So weird because it feel like something so, so bad is happening up there right? The head pressure is terrible!!! I am seeing a wonderful neuro now and she would like to do some testing about the pressure and she'd like to help with the headaches. I'll move forward with that in a feweeeks and keep you posted. xo 718mom

For me, I did have some symptoms that add to my POTS now. I had frequent urination at night (like 4-10 times!) I had very low blood pressure (it never bothered me though and certainly not as low as I sometimes get now). I would try to never take naps during the day because when I'd wake up I'd feel really, really bad (like the way i feel now with POTS!!!) When I would wake up in the morning it was nearly impossible for me to go back to sleep. (adrenals?, I dunno) Insomnia, horrible insomnia. What about you?

I was wondering what our jobs were before POTS. I was a teacher in the South Bronx. I had quit my job just 5 weeks before I got POTS and I often said in those weeks before that I was "running on adrenaline fumes". Needless to say I was stressed tot he max. I notice a lot of nurses in the pots forums as well. Did many people have a stressful job/life situation before POTS? thx! 718mom

I could have posted this myself. I did have to send both of my kids to daycare while I was home for the first 8 months. Now I work in a prek! I felt so guilty and I still do, I get home and only want to lie down, make dinner, clean up? Ha! I am at work now with a virus my daughter had this weekend, feel horrible. Like you I'll take this if it means my kids will never get it. Feels like my life is over, I know it is not but that is how I feel.

I just started back on florinef, started with half •1 and I had headache first two days but now seem fine. You could try it for a while and see how it goes, for me, last time, it was amazing, felt like my pre-pots self. GL!

Thank you!

Welcome Adam and Ben's mom!!!! I wanted to welcome you, I don't have PAF, but i have POTS and I have two kidddos too! I was wondering how you are feeling and how much you are able to do each day? There are so many knowledgable people here, you will surely find a lot of answers. xo 718mom

Thanks for your replies! Thankfully i do not pass out, at least I haven't in a long time! When i started Midodrine last year it really helped me, I did have the headaches then but not as bad as now and not as frequent, after about 8 months I started florinef, the two of them together made my BP sky rocket so I lowered the midodrine from 10 to 5mg. It still stayed too high and the headaches were intense. I really liked the midodrine, not the crawly scalp and the itchy scalp but how nice and cool I felt when the temps were so high last summer, plus I was able to do a lot more. I have just started the florinef and already I feel a lot better. I will hold off on the midodrine and consider an SSRI or SNRI that has a little BP raising side effect to it

Hi friends, I recently visited my GP (who was not there) and saw a substitute Dr. instead. I told her about how I was dx'd with POTS and how Dr. took me off meds because he said I was all better. She did my BP sitting and standing and found I dropped from 120 to 90, she wanted me to see my cardio again (she knows him) so I headed back to my cardiologist yesterday and he put me on florinef .1 and midodrine, 5mg. The thing is I do not like the midodrine, it really makes me feel like blood vessels will burst in my head (it hurts!!!). So i'd like to not take it. He also said he'd like me to switch from zoloft (currently on 50mg) to something better. I was wondering if anyone has had a good outcome with just florinef and an SSRI or SNRI? I was feeling really good on florinef before so not too worried about that, but I do need to take some sort of SSRI or SNRI because I have anxiety (the zoloft has helped so, so, much!!) Any ideas of things I could put out there when i see my Dr. or a psychiatrist? Thank you!!!

There are some great teen potsy videos on youtube. Just search it!

I actually was on levaquin after I started having my POTS symptoms.

Happy Mother's Day, the hardest part of having POTS has been being a mom with it. I want to send all of my love to the POTS moms out there and to all of the moms who take such great care of their kids who have POTS! xxoxox

I have an appt with dr pecker for June 7th!

It is the 3-4am episodes for sure. When I first got POTS it was misery all day, now it is the 3-4 am episodes, sometimes in the early morning I feel horrible and sometimes around lunchtime I feel horrible, but nothing as bad as the 3-4am thing That's when my BP plummets.

Thank you for this info about Dr. Pecker!!!

Thank you so much Stace! I had my TTT at WC so that would be great if he could take me!

When I read the part about the "cause" of POTS I was so mad I couldn't read the rest.

About 7-9 hours, I am so exhausted by 3-4pm!

Thank you tearose! Wow. You would think NYC would have someone, I saw dr george thomas from cornell for my TTT and dr ilya kaplan is my current dr but he says I am all better because my bp is better. The thing is I don't feel all better. I have heard the wait at mayo is so long. So hoping there was someone around here who could make me a treatment plan but I guess I will have to branch out! I have heard a dr. Polsinki(sp?) From DC is amazing but he is not taking new patients. Thanks again! I have cancled my nyu appointment because I don't think they will be any help

I really need ahold dr. To help me manage my pots, does anyone know of a nice one? Thank you! Clover

I had the best drinks a few weeks ago and came home and felt horrible! It was the week I quit florinef and maybe dumb for me to have alcohol but my cardio said I was better so I was celebrating, lol. I promised myself I would never drink again and it makes me sad because I really enjoyed a drink now and then. Oh well.

Have you been checked for Addison,s?