Alyssa

I don't know if it's POTS related or not. Does anyone else have problems with sleep paralysis? It's very unsettling and lately has become a nightly problem. I absolutely can NOT sleep on my back or I will have several episodes. I usually have to sleep on my stomach to try to avoid it and end up with only 1 episode. If I don't have a paralysis episode, then I'm sure to have jerks throughout the night that wake me up. Any thoughts? Doesn't seem stress or anxiety related. Also, this may sound weird, but does anyone else ever get a feeling of numbness in their stomach? I get this at night as well and it can drive me crazy (can happen during the day if I'm sitting still). I will usually roll up a tshirt and put it under my stomach when I'm about to go to sleep so that I can feel the pressure. Sometimes I wonder if it's all in my head as everyone else seems to think so.

I know exactly what you mean! My arm was completely asleep just a few minutes ago. I wake up in the middle of the night a lot with no feeling in a foot or arm. Wish I knew what it was and how to fix it.

I have POTS and also get myoclonic jerks - mostly in my legs and face. I believe the TTT is where you get the distinction. With POTS, you see the HR increase. There are differences in each form of dysautonomia, unfortunately I'm not educated on all of them enough to really answer it. =/

I'm not sure if you would've had a reaction so quickly. I can't take florinef. After my first pill (1.0 mg), I was violently ill with flu like symptoms. Each pill I took that week was worse, and I was taking it 3x per day. It's something you may want to talk to your doctor about. Florinef is generally tolerated well, so even my doctor was skeptical at first - hence why I was on it for a week before I could stop it. I know with me, the symptoms got worse over time, and at 5 minutes it I couldn't tell I had taken it. It took about an hr to start making me sick. I would say if you're worried, call your doctor tomorrow. If you think it's an allergic reaction, it's not something you want to mess with as florinef builds in your system over time.

I am currently on Midodrine and Atenolol. Unfortunately, they can't up my Midodrine dose as my resting BP is really high. It plummets when I stand, and I faint just about any time I am standing. I am thinking about getting off the atenolol since it's not helping and is messing with my asthma way too much. I'm not one to want to play musical medicines. I'm lucky that my service dog alerts to faints and keeps my from falling too much, but if he isn't within a foot or two of me, he can't catch it.

I get warning about 50% of the time. The rest of the time I don't know until I'm waking up. If I have people around me that know me really well, they can pick it up before I can - slurred speech, paleness, eyes rolling back - and they'll catch me just in time.

For those of you that faint, do you wear a helmet? I was considering it. I currently faint between 1 and 30 times per day and have had many hard head hits and bloody noses. I know it can get a lot worse and I've been lucky so far, but it worries me. Just looking for other opinions. I know they make helmets for people with epilepsy and such.

I had this exact problem last year. I ended up in the hospital for 2 weeks because I severely dehydrated and lost 20lbs. I couldn't even eat ice without vomiting afterwards. They ran test after test after test and never found the cause. This eat and then get sick thing went on for over a year. Once your stomach gets used to doing it (for example, bulimia, or even a stomach virus) it can become routine for the stomach. Assuming that yours is like what I had, I ended up having to fast for 2 days and then I would get 2 or 3 days of relief - Do this only under supervision of your doctor!! Do you have any allergies to metals? As it turns out, I'm allergic to nickel. I get severe rashes from belt buckles, bracelets, necklaces, etc. You wouldn't believe how many foods are high in nickel. I ended up going on a low nickel diet and it seemed to have solved the problem. Every now and then if I'm not careful with what I eat, the problem will return. Hope that was of some help!

I have had symptoms for almost 2 years now, with a diagnosis of OH, slightly controlled by salt and water intake increase. Everything got really bad about 3 months ago and I began fainting around 30 times per day. I got in with a new cardiologist and she gave me a dx of pots and started me on florinef - 0.1mg 3x per day. Even after the very first pill, I reacted horribly to it and was violently ill. I stayed on it for a week hoping that I would adjust. I decided it just wasn't worth it. She took me off of florinef and started me on 2.5 mg of midodrine once per day. A week later I saw no changes. My doctor said she wanted me on it for awhile longer to see what happens. I waited another 2 weeks and called back. She brought me back in, tested my BP and HR and as suspected, there were very little changes in BP. Yesterday, she doubled my dose of midodrine to 5mg 1x per day and added atenolol - 25mg 1x per day. I took the atenolol that morning, but didn't take my increased midodrine since I had just taken my previous dose. Within an hour of the atenolol I was having severe asthma attacks. I got the attacks under control, but remained wheezy for about 5 hours. I tried again today, but with the increased dose of midodrine. Same results. The atenolol was really messing with my asthma and I was incredibly fatigued. I pretty much couldn't stay conscious unless I was on the couch. I called my doctor and she again said that she wanted me to stay on the treatment plan for at least another week to see if I adjust to it. Has anyone else had so much bad luck with these meds? I always heard of midodrine being so good, but I can't even tell when I take it - other than intense headaches. It also makes my heart race when I'm at rest. For the few hrs that midodrine is in my system, my HR will not go below 115. Doctor says that's coincidence. I refuse to do SSRIs. I had a bad experience with Paxil that left me with chronic side effect problems. Finally, I tried to talk to my doc about getting a wheelchair/walker to use when I go to work or out an about. I currently can't drive and my work has me doing at home work until I've gone at least 3 weeks without a faint. I simply got a "you don't need that" from her and no further discussion. What do you guys think about it? I really want to get back to work!