Potsie007

I gave up driving for one year until I got well enough and stopped getting dizzy. I now make sure I don't keep my seat straight up, but I recline it back a little further than normal and that seems to help me. That goes along with sitting anywhere. I can't sit in a straight back chair with my hips and knees bent. I'll get dizzy within a few minutes like that...it's as if the blood can't get back up through the 2 bent angles of my knees and hips. When I sit with my legs and hips more stretched out, I do much better. I would seriously look for other options though if you're still getting really dizzy. Too dangerous for yourself, as well as others. Good luck!

I have had the same exact symptoms and feelings as everyone here has described. (dizziness, fainting, and like a jolt of electricity in my chest which jerks me awake/kicks my legs, back or even makes me sit up.) I've had this sleep issue at least 3 times / week (and it can happen all night long sometimes) since POTS started for me in May 2009, so I'm really tired! lol I've been to Dr. Grubb (awesome man), as well as my regular ElectroPhysiologist, and some other cardiologists who told me: Take melatonin and/or magnesium to help with sleeping. Some doctors have just dismissed the entire complaint not knowing what to say and making me feel like I'm crazy. One doctor said I should do a sleep study (which was what I was hoping he'd say), but sadly, my COBRA ran out and now I have only emergency medical insurance, so that is on hold. One doctor friend suggested taking benedryl, which has helped on occasion, but I don't want to keep taking meds for it. I used to be a serious ballet dancer, so I've been incredibly aware of what my body feels. It can get frustrating when I definitely know what my body is telling me, yet the doctors dismiss or don't believe what I'm saying. To help with this fainting/jumping issue while sleeping, I try to be loaded up on G2 before bed, always have a bottle nearby, and generally will drink a cup of buillon before bed when I feel it's going to be a rough night. I have also slept with my head raised up since the start of POTS when I told a doctor this, he scoffed and said: Raising the head of the bed is just for adjusting Potsies to being upright already when they wake up before getting out of bed. I decided to sleep elevated because of precisely the sleep issues listed in this thread. After charting everything from diet to BP and HR daily for 9 mos, I came to the conclusion that sitting up while sleeping was better than laying flat for me because my BP would drop way too low. Then my heart kicks in and will go 150 bpm to get the blood flowing (which may explain the reason some of you feel out of breath). I would sleep with a heart wrist monitor on, as well as keep my BP cuff on while sleeping. As soon as I'd get the jolt awakening me, I'd hit the buttons to see where BP and HR were. Sure enough, low BP and high HR. Caught red-handed! lol I am currently off all medications for just over one year now. Aside from this sleep issue, I now only feel symptoms when it rains/weather systems move through. And now, I'm going to knock on wood! lol I have to say thank you to Atomic811 for starting this thread, because I've been dealing with this issue for 2 1/2 years now, and feel like I'm the only person on the planet like this. I'm really sorry you're all experiencing it too, but it is a relief to know that I'm not crazy...entirely...lol. Good luck to everyone! Will post if I find anything else that helps!

I also have issues sitting down, especially sitting in an upright chair. My guess is that due to the legs being bent at the hip as well as at the knee, it makes it more difficult for the blood to be pumped back up. I notice a big difference (feeling better) when I slouch down in my chair and extend my legs and hips out if there is no option to put my feet up. Now I'm having difficulty being supine. Seems my BP and HR go really low and I feel like I'm passing out in my sleep.

Count me in as a veg-head too! My dad calls me his "synthetic vegetarian" because I ate so much carby junk food pre-POTS. Post-POTS, I've begun taking multivitamins and eating less junk/carbs...and I've put on nearly 20 lbs...(scratching head) Obviously I used to be extremely active. Been a vegetarian (not vegan) for 12 yrs now and love it...especially since they make so many varieties of vegetarian food for us these days. I don't think being a vegetarian affects POTS much. POTS still ***** either way.

I also get this sensation as if I am detached, yet it feels scary as if I am going to pass out. In the first 2-3 months of having POTS, I had this feeling, but I felt like I was dying...like I was actually leaving my body. It was horrifying. I've been doing better for the last 2 months, but when I get this disconnected/detached feeling, it seems to now happen when I've been lying down already (however, the head of my bed is elevated close to 45 degrees) and mostly in the evenings/night time...or sometimes while sitting down. This thread indeed has brought comfort to me as well, because my family and doctors look at me as if I have 3 heads when I speak about it. Thank you all!

Oh, well that's good anyway...bad part is, the search goes on....I"m still searching too. I'm not sure what the next step is either. I want to keep looking for the answers myself. I'll just keep going to the specialists which I haven't gone to yet...I like to think of it as also doing my part to educate the medical field on POTS.

I'm a newbie here for the most part, but what I've observed with myself is that in the beginning, I'd get flushing at random times. It would last anywhere from several minutes to an hour or far more. Now, 6 months into POTS, I notice that it mostly appears when I've been thinking of something that makes me nervous/anxious/stressed, and it usually lasts just several minutes now. After all I've read, my hunch is that it is related to adrenaline/hormones, but I'm not sure what's happening scientifically. I've weaned away from most of my meds, yet I still get them. Now, intstead of feeling like I'm on fire, I feel like I've got the cool breeze of a York Peppermint Pattie rushing through my hair/face/neck/shoulders/arms/upper back! lol I'd now describe mine like someone has put Icy Hot all over my face/neck/shoulders/arms/upper back. Strange.......I so want to get to the bottom of it all!

How are you doing now Caron? Please update us. Hope you are doing ok! 007

Hi Caron, I too am on Metoprolol and had exactly the same experience. I asked my doctor about it and he said I could try 1 pill in the a.m. and only 1/2 pill in the evening. This dosage has worked perfectly for me. Ask your doctor if you can do the same. Let me know if it works for you! Good luck, 007

Florinef was the first med that my doc put me on. 4 days after starting it, I was unable to get up out of bed. After 3 tries, I finally managed to get up, make it to the bathroom, then I blacked out on the floor. I literally was unable to get up off the floor (gravitational pull was WAY too strong), but luckily had my cell phone on me. I called my doctor right away and told him what was going on. He said I needed to call an ambulance and come into the hospital. I wound up staying a week in the hospital where they also put me on Midodrine (which also helped, but was a nightmare for me to take--it made all my symptoms 1,000 times worse), Celexa, and Lopressor. After 1 month, I tapered off Midodrine, then seemed to do quite well after I passed a stress test and another tilt table. (I believe the exercise and tilt table "reset" my body somehow) After continuing Florinef, Lopressor, and Celexa for another month, in addition to adding mild exercise (walking), I've been doing great! I have just been weaned off Florinef for 2 days now since mid-July. So far, I'm ok, but having more symptoms creep back in. Thankfully they are mild at the moment and I am still up and about. Sorry to have written a long post, but just wanted to share what has worked for me in hopes it may help someone else. Take care and good luck! Let us know how you're doing! Potsie007