lostkendra

Just curious if anyone has the bizarre combination of POTs and Siezures? I had just the normal run of the mill POTs. The ups and the downs. But mostly under control. My doctors have me on this wonderful cocktail that enables me to teach most days and keep up with my normal life. Now I've had 2 epidsodes that include a 1 to 2 hour catatonic phase where I can't move or talk. Both times I was able to make it to safety before 'zoning' out. Anyways, they are now thinking that I might be having seizures. As if narcalespy and POTs aren't enough. Now I'm going to have to worry about seizures! (Now for my melt down) This past January, I finally grew up and became an adult. I've been managing my own money. Looking into the future. I started a Roth IRA. I've realized that my bf isn't good for me. I've found a house that I'm in the middle of buying. I close at the end of the month. My first house! It was hard enough to buy a house knowing that my POTs flares up and I'd have trouble at times taking care of myself. I'm not even thinking of the fact that I can't drive half of the time. Now siezures, if they prove it's siezures, the driving thing will no longer be an issue. My license will be gone. It won't be my choice. Hello bus, if I can walk to it. At least I still have 2 weeks before closing. I can still get out of the deal and only lose my earnest money. If I do that then chances are I'll have to move back in with mom and dad. yuck! SEIZURES????!!!!

In November, I started to have similiar symptoms. All of a sudden my neck (mostly the base of my skull area) would start to hurt so much I could barely handle the pain. It would take me forever (3-5 min) before I could even move. After that my neck would be very sore for days. I had trouble turning my head. The doctors gave me muscle relaxers and said I must of pulled a muscle. I then noticed that the sharp disabling pain would happen when I was on the ground of kneeling and about to stand up. When I talked with my family doc and cardiologist they didn't think that it had anything to do with POTs. I continued the muscle relaxer getting very little relief. I ended up in Express Care (a step down from the ER). The doc gave me a stronger muscle relaxer and Aleve. When I had an episode at school, I went back to my doctor and got the "well, maybe it is POTS" (now, I hadn't seen my POTs doctor in 1 1/2 years because he took a sabatical and then went into research.) My family practice doctor said "it might be time to find you another specialist. My new POTs doc changed some meds around. He said he wasn't sure if the neck pain was caused by the pots or not. He said it was a definate possiblity. We added more meds to my daily cocktail. I was only on florinef and midodrine. Now I have meclizine, (I'm trying to remember the order we went), skelaxin, lyrica, and clonidine. I do have other meds but they aren't necessarily for POTs, but they are part of my cocktail. Hello med bill!!! Hope this helps.

I am currently an elementary special education teacher. I lost my first self-contained room due to 1 major pots episode. This was before I was diagnosised. I had the principal where I student taught, stand up for me and let me move building. That year I spent most afternoons in the nurses office laying down. The next year, I moved schools again (with the help of my administrator). I taught at this school for 2 1/2 yrs as a resource/inclusion sped teacher. It was a magnet school and one of the biggest schools in my district. Finally this year, with inclusion and the amount of running around the building, my body decided that I couldn't handle it. When the principal started talking medical leave of absence, and I could still do things as long as I was sitting, my sped director took me out of the building to work on a special project for a month. I have moved schools once again. This time, since the sped director knows I can teach, but I need some accomodations, she found me a school where the principal is understanding. I have a chair in my office that I can take breaks in. I have a 5 min transition built into my schedule between groups, and a 15 min break in both the am and pm. This does not include my breaks. With inclusion, I only have 1 pull out group that I take to my office. The rest of the time, I'm in the classroom. Normally, I help the entire class and not just my sped kiddos. The teachers know that if I'm not feeling too well, I'll just sit beside my sped kiddos and am not as mobile. Everyone is very understanding. I have also had to leave early a few times because my symptoms get so bad that if I were to stay and 'push' through the day, My body would revolt and I think I'd miss another week of school (like I did in Nov). My current principal does have some concerns but realizes that I am doing the best I can. She's also beginning to actually understand what is going on. She still wants me to come back next year. We are all very cautious about me overdoing it. This is very easy as when I can, I like to do so much. We are even looking at case loads and trying to arrange it so that I'm not stretched very much. Boy that is a long post for such a simple question. I guess that it is also kindof like an update since I haven't given one in a while. Kendra

Wow! I'm sure that must have scared you until you figured out what happened. I'm glad you had your hubby to come get you. I normally get all my daily pills ready in the morning. I make sure to leave my sleeping pills on the counter. Don't want to confuse those. It's the one pill that I take as I'm going to bed.

I sure would be nice to avoid colds and flus. I tend to get slightly sick about once a year with a cold or something. I get a flu shot regularly. A couple years ago, I got a cold that turned to bronchitis, and progressed to pneumonia. Now when I get sick, I call the doc office and they get me some antibiotics. I'm not going through pneumonia again if I can help it. Hat's off to those here that don't get sick.

I recently bought a Sportline HR watch at Target. It was only about $45. I have trouble taking my HR as I can't tell what thump is my actual pulse and what thump is something extra that I'm feeling. Yuck. Never thought I'd have problems deciding what I feel and what is actually happening. So far, I haven't had any real problems. Most of the time, I can get a rate just fine. There has been a few times when it just doesn't want to register anything. Oh well, I'm getting good data anyways. For example, my hr increases on the elevators. Go figure. I don't have the endurance to go up the stairs cuz it raises my hr and I get too weak, but using the elevator increases my hr too. Fortunely, after the elevator, I recover much quicker. That was just a gee whiz FYI for you

Congrats! That's really good news.

Supposedly if the little plastic stuff at the top (I have thigh high) that normally keeps the hose up doesn't do real well, or if the hose keeps falling, then the glue will hold them in place. It's suppose to be the kind that washes away with water. I am really liking the thigh highs as I don't have to tend to them when using the restroom.

A few years ago, I went to Kmart and Walmart and couldn't find a pair that 1. was comfortable, or 2. seemed to help. I was a good patient and tried a few pairs for a couple of weeks. When I started having problems recently, I thought I'd give it a try again. This time I went to a medical supply store to check out the compression hose. My doctor recommended that I start with the least compression and work from there. The lady at the medical supply store was awesome. She helped me try on different brands. We tried on different styles and different compressions. I really like the 8-15 compression. They are just slighly tighter than regular hose. I also got some 15-30 compression. These are nice until mid afternoon. I'm going to try some glue and see if that helps. I fully suggest going to a medical supply store. If you're near Kansas, this lady that helped me was awesome. I believe that all customer service reps should be as nice as she is. But that's a different vent for a different day.

I feel for you. It's amazing how as I'm building my endurance, i'll feel just fine. Okay, if I can do this, than surely... I've had to start putting limits on what I do. I can't just go off of how I feel. I wish it were the gradual effect so that I could constantly measure how my body is handling things. Sadly, it's not. I'm still building my endurance, but it's a lot of "I'm fine", then "Ooops, I was wrong."... It's hard not to push when you feel fine. My heart goes out to you.

Amy - I still love your weebles quote in your signature. I swear, I use it on a daily basis. Since I've seen in on your signature, I've almost been afraid to use it. But it's true. Since I've never actually passed out, I will continue to discribe myself as a weeble!

Have you ever felt your foot go to sleep? You know that crazy tingly feeling that just drives you crazy? When I started Midodrine, I felt like my 'head' would go to sleep. It didn't hurt, but it sure felt wierd. I did not notice it constantly, but I did experience it for 3-4 days. Then it went away. Now every now and then I'll feel my 'head' tingle and realize that I am a few hrs past my 'normal' dose. Can't tell you exactly that it's what's making me feel better, but I do know that I don't have any negative side effects and that whatever medicine concaction (sp) that I take everyday does help a lot. Hope everything works out for you.

The other day I was getting frustrated beyond all belief with my various symptoms, vulnerabilities, and reliance on others. My grandmother was driving me around yet again, when it dawned on me. The feelings and sensations that I am feeling are (to some) very much in demand. People spend a great deal in order to experience the sensations that I am haunted with. Just think some have paid so much that they've lost money, family, and friends. I can not imagine wanting to feel this way. I spend most of my time just trying to deal. My money is spent on doctors and meds to eliminate these sensations. I am very blessed that I am on this side of the line and not the other. Just to imagine.....<shaking my head>.... I know that this has nothing to do with the original posts, but it is something that crossed my mind while reading all the replys.

So here's a silly not so silly question. Is Clonidine the same as Klonopin? About half of the stuff I'm reading fitts into my "Clonidine" folder in my brain. I'm wondering if these meds are the same?

I'm trying to upload a personal picture and for some reason the system is not letting me do this. It's a small picture. Ideas?