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?

Mark - Welcome. I'm still new too and am just trying to take in all the posts. This seems to be a wonderful and knowledgeable bunch of people. Now that I've gotten that out of the way, I've got a silly question. I know, I know, there is no such thing as a silly question, only an unasked one. (Just to forewarn everyone, I ask lots of simple questions) So anyways, what does FWIW mean. I can't seem to fit any meaning to it and you have referenced it more than once in your posts.

Last night I actually had an awesome night. I went to a Christmas Party for a company that I work at part time and that my sister and boyfriend work out. I was pretty busy in the morning being drove to a few hour long appointments and spent the entire afternoon laying down with feet up so that I'd be able to feel 'semi' normal. When I left, I went guns ablazing, compression stocking, meds in purse, the whole 9 yards. I felt great. After almost 2 months of not making it through days. I did great. I will admit that I had several glasses of white zin (but I'm rationilizing this as it had little alcohol). I didn't see any adverse effect with my meds. I was very social and fluttered around the room catching up with people. I even had the energy to dance!!! YEAH! Now don't think for one moment, that I didn't pay. After dancing, it was to the chairs with me. I'd pull another chair close and put my feet up. I even did that during the speeches. I did throw in quite a few glasses of water also. What a night! The only think I feel today is a racing heart rate and a slight pressure in my head. I just knew I'd survive this round of POTS. I know it's not over, but I now have a glimmer of hope. It takes a lot of energy to be remain positive when things are bad and have the potential for getting worse.

Thank you guys for your input. It really does help. I have a therapist that is the absolute best. A couple of years ago, I was going through a medical review and the district had me seeing pyschs and docs, I went to the 'help desk for dealing with job related problems' therapist that you get to see 5 or 6 times for free. That guy refered me to my current therapist and she's been wonderful. I continue to see her even when I'm doing absolutely great. I want to "CYA" - cover my ---, just in case I ever get into that situation again. "See I do follow advise." She definetely was helpful the past few weeks. I just happened to make an appointment the day I realized I couldn't continue my job the way it was currently scheduled. She helped me get in control when it seemed like everything was going to fall to pieces in 1 day. (I'm very blessed.) She has never thought that my symptoms have been psychological in nature. Yes I am stressed and anxious, but it's not causing my condition. It may make it worse, and effect it, but it does not cause it. She has been encouraging me to call around to find a new doc. She's definetly on my side. The Lord certainly has been on my side this time around. I will continue my search through that big yellow book. I'm bound to have the 'perfect' doctor fall into my lap.

I had never heard of swallow syncope. I'm glad that you have found something that works. That's awesome!

I mentioned before that I am not happy with my current primary care physician. I have not been happy with him for many years now. Before I was diagnosis, I was too bothered by having to explain everything yet again. It would be a nuisance to have to go through the entire history, yet again. It was nice to have someone that I could go to that knew me. Shortly after I was diagnosis at KU Med, that cardiologist took a sabatical and then went into research. There was talk of sending me to the Mayo clinic, but nothing came of it. There was too much in limbo and I of course just didn't have the energy. I did happen upon my grandfather's cardiologist that knew of POTS. This was nice. I'd go to him and he'd say "yep POTS, sorry no cure". Though when I'd call his nurse with symptoms or situations, he'd always adjust my meds or give advise. Now, I absolutely LOVE one of my PCP's nurses. If I go to her with normal problems, she's awesome! She can explain what's going on. Then I look for the connection to POTS. She's actually the one that got me back to KU Med. With all that's going on, I see that's it's getting more and more important for me to get a good PCP that I like. I have started to call doctors in town looking for someone that is familiar with POTS. They don't have to know everything, but I want them to be aware. Here's my question. During my search, I've been told the PCPs can be family practice docs or they can be internal medicine docs. Do you guys have any opinion on which is better or more likely to be my best shot. I did talk to someone that has some potential. There was an internal med's nurse that sounded great. When I told him that I have a diagnosis that is uncommon and most doctors are unaware of, his comment was "if Dr X doesn't know about a diagnosis, then he would do the research to become knowledgeable." He even mentioned that is what doctors do. I said "You would think so." I hope I didn't offend him. I do agree with him. Anyways, even before I told him the dx, the nurse was confident that the Dr would have knowledge. He said the the Dr does a lot of research and is very knowledgeable. I asked if he'd check on whether Dr X had knowledge of POTS and he's suppose to call me back. I found that whole encounter very promising. The way he talked, this was a dr that I would really like. Back to my question. Any thoughts on what type of doctor I should start looking for. Family practice, internal medicine, ... others?

I appreciate your comments. It's great just knowing that there are people who understand. Last night after I wrote my introduction 'book' post, I feel tons better. It seems that I must be feeling better emotionally. Today, I've taken the time to type up a med list with doc info just in case something happens at work and they need to call someone. My therapist wants me to start calling doctor's offices in town. I haven't been happy with my family practice doctor now for years, but I've been reluctant to find a new doc. Now with stuff going on, my therapist has recommended that I start calling internal med doctors to see if anyone in town has even heard of POTS. It would be nice to have someone that has the slightest clue. I explained all that, because I had been putting that off for the past week or so. Now, I'm about ready to open the phone book.

I love to dance. Country dancing is my favorite. Nothing like a two step or swing dance. I use to be able to go to the club and stay all night. I did not say dance all night. i was out every weekend. Now I'm out once every month or so. When my feet just can't help but dance. Since I slightly crazy, if I'm standing when I hear a good song, don't be surprised if you find me dancing in the aisles at Walmart. Of couse, lately you don't find me on my feet often, but I did start dancing today at work. My co-worker looked at me and asked if I should be pushing, so like a 'good girl' I stopped and mopped for about 30 sec before I started singing the song instead! I'll show them, POTS will NOT get me down! Kendra

Hello, I'm Kendra. I'm new to this forum, and thought I'd introduce myself and tell you a little about me. I'm currently an Elementary Special Education Teacher in Topeka, Kansas. I have been diagnosis with POTS now for about 2 1/2 years, but have been dealing with it for about 13 years. Okay, now I'm starting to feel old. I am normally a fun and energetic person. I love teaching and finding new ways in which to reach the kids. I am also an Air Force brat and have traveled a little. And like all good brats, I served my term in the Air Force. (I think that hits the basics) Lately, I've been having some problems with my POTS. Last week, I stopped teaching in the school because I had missed almost a month of school. I was unable to make it through the entire day. Thus, I am now sitting in the Special Education Office working on some side projects. I didn't lose my job, but they are now in the process of replacing me in my teaching position. I am very hopeful to regain and build my endurance back up so that I can handle being back in a school atmosphere all day. This is not the first time, I've had problems. About 2 1/2 yrs ago, my first year teaching, I was having slight problems. One bad episode at school, some over-reacting people in administration, and a medical review board got me out of my first school and into this last school where I have been for 2 1/2 yrs. I was also given a medical discharge from the Air Force when their psychs decided I was 'unsuitable for military service'. I'm not bitter. It's part of who I am, and why what I'm going through is so tough on me. I know in my heart that my health will not allow me to give the students the support they need. I'm glad I still have a position in the school district that I can do without having to worry about income or any of that not so good stuff. Last week was very hard. I went through a lot of ups and downs. I have a good support system, but it's hard for my pride to accept that I need help. I have been living with my boyfriend, Dan, and trying to get by without my family. I did finally suck up my pride, and tell my family that yet again, I was having trouble with my POTS. Right after I was diagnosis with POTS, my doctor decided that he needed a break from practicing medicine. He was going to take a sabatical, then research. Thus I ended up in a town with a PI that knows nothing of POTS and a cardiologist that knows enough to say 'yes, that's POTS.' I have been doing good at staying on top of symptoms and when something changes, I'll call a doctor/nurse and say, 'This is what's happening, should I be concerned?' They in turn adjust meds or have me come in. Last month, my symptoms just got too much. They finally said 'This is out of our expertise.' Thus, another referal to KU Med and I now have a new POTS doc. We've added more meds, adjusted some others, and things are starting to get better. I have been doing lots of research and found this forum. (By the way, I love www.potsplace.com) I was reading some of the posts and I just love the fact that I am not the only one going through this. I see lots of people with the exact questions as I have. I also see lots of people who have gone through what I am going through and have their own personal experiences to reference. I just love what I see in this forum. I only wish that I had found it sooner. I know that I am rambling. I'm up way past my bedtime, but it just keeps flowing. Even though I couldn't post last week, just reading the posts really helped. I know I am not done dealing with this round, and I know that there will be other rounds. But knowing that it's not all in my head, really helps. Knowing that I'm not the only one dealing with doctors that say "I'm sorry you don't feel well, but I can't find anything wrong with you." Knowing all this really helps. See there I go again, crying. (I'm doing that a lot. Like when my friend offered to take me to my docs appt last week, we were going to put up Christmas decorations, but instead she helped me pack up my classroom. I bawled.) I don't think I use to be this emotional. I wonder if it comes with getting older. Well, I'm sure that's enough for now. I just wanted to say hi and thanks! You guys helped me out so much. Kendra