UnicornIsis

Thanks y'all. He had actually taken classes by my NCS/POTS doc several years ago. But I still didn't trust what he said really. He found out my dad used to be an EMT a LONG time ago and he kept trying to one-up Dad on everything. When Dad told him he'd been one for 7 years before this Tech had, it just made it worse. Opus88, you're probably right about him thinking it was FD. Even if that's what it is I don't trust him. BriarRose, thanks for your input. I still tell people myself, but the doc Friday night just wouldn't listen. He kept ignoring what I was saying and acted like he didn't believe what my parents and I were telling him. It's great to have someone who works in the profession be able to give their opinions and knowledge and experience too. MightyMouse, thanks for the info from/about the FD not being degenerative. I didn't think any of this was actaully degenerative. But the way my NCS/POTS doc explained it is that my body is constantly sort-of attacking the autonomic nerves. The medications he has me on can try to stablize my system enough that it can regenerate some of the nerves, that is until those get eaten/attacked. And it's a constant cycle. Thanks for the websites. Mom and I had done some research on the connections before and hadn't turned up anything that would make us believe this Tech. Thanks for all y'all's input and advice!!

My brother and I are both ADHD (he does NOT show symptoms of NCS or POTS) and he is on the highest dosage of Concerta. It helps him a LOT. It calms him down considerably!! I don't know about helping with your fatigue. My doc was going to put me on aderall or another riddalin(sp?) type drug, but decided to leave my meds alone since I WAS doing well. I'm a lot worse this week so we'll see what he says when he calls me back. I know this isn't much help but I wanted to respond anyway.

When I went to the ER Wednesday night and Friday night I was told something new and was wondering about it. I went in the squad Wed. and the ALS tech who was working on me said he knew about dysauotonomia. According to him it is a form of Musclar Dystrpohy in that both are "degenerative nerve diseases." I have looked it up and so has Mamma and according to what we have found MD and Dysautonomia are NOT related at all. I'm still wondering however, if Dysautonomia can be called a "degenerative nerve disease?" That is how my doctor expalined it when he diagnosed me, but that phrase has never been used before Wednesday night. Do any of you agree with that phrase being an accurate way to describe it?

I was just last week diagnosed as "hyper-sensitive to heat" by my NCS and POTS doctor. I am VERY fair-skinned and have always had trouble in the sun. I have never been able to tan, I burn after 10 minutes in the sun and blister up. My pediatrician when I was little suggested getting burned a few times to build up a tolerance to it and then I would be able to go in the sun okay, but it never worked. It did for my brother, but he is MUCH darker skinned now. I can't even step outside on the front pourch for more than about 5 seconds before I have to get back inside as quickly as possible so I don't pass-out. And the bad part is the 5 seconds time is literal, not exagerating. I got 2 BAD nosebleeds last weekend and went to the ER Wednesday night and Friday night for my heart racing too fast and not being able to breath. I used to be able to stand the heat enough to walk down and get the mail, but I can't even open the door to let the cat in the last 2 and 1/2 weeks. It seems to be MUCH worse in the sun, as opposed to the shade. I'm stuck inside now almost all the time. Riding in the car now is horrible because of the heat even with the AC crancked up full-blast. It used to just be bad from the movement, but this is sooo much worse. I haven't left the house except for the ER trips and to see the fireworks in the middle of a bad thunderstorm since last Monday. My doc says the AC unit isn't enough and is writing us a note to get centeral heat and air and a note for a swimming pool too. He says the heat problem is worse for females because we are naturally hotter than males. I told him a few weeks ago I was able to get in my cousins' pool and play for about an hour, but I had to keep dunking my head under the whole time and keep as much of me under the water as possible. The water wasn't cold, but it had been warmed up a bit by the sunlight all day. This was aroudn 7:00 that night. He said that is good, and I need to start doing it everyday to keep me cold enough, but we don't have pool and the YMCA they're building out here isn't open yet. I'm in the country and they just started enforcing no swimming at the boat landings on the river, so I'm out of that option too. I read everyone else's posts and it sounded soooo much like what I'm going through now I just had to stick my 2 cents (okay closer to a dollar now ) worth in.

I know that none of us are docs. Sometimes I wish we were, but other times I don't want to know any more than I have too. They wanted me to have the liver ultrasound right away, but the ultrasound tech had already gone home for the night and wouldn't be back until the morning. So they wanted me to come back in the morning as soon as he got there and have it done. The ER doc also gave me a prescription for potassium suppliments which the on-call doc at my doc's office agreed with. We're not entirely sure the labs that we got back were actually mine. The blood was taken at 10:00 that night, but the labels weren't sent to the lab until almost 1:00 am. Most of the levels match within a few points my labs from Wednesday night, but Wed.'s labs didn't test for the liver stuff. So on the advice of my doc we're going to wait until probably Monday and go to my PCP and have it done again. We're going to go ahead and get the potassium prescription filled on Monday when the pharmacy opens up again. The ER doc kept saying hepatits. Nothing else showed that, but he didn't seem to listen to much that I said anyway. He didn't even call the on-call doc until 1:00am when he finally relased me. He was supposed to call him to consult on what to do with me and we kept telling the ER doc to call my doc! He didn't seem to believe most of what I and my parents were telling him either. POTSparent, that is a good idea. That was actually the first thing they checked for at the ER and said "unfortunately everything else is normal." I think the doc could have used a class in bedside manners. THANKS for both of y'all's input!!

Okay, I used the search function and didn't find what I was looking for, so I decided to go ahead and post this. If I'm repeating something that's already been posted, please have patience with me and point me to where it is located. I had a really bad week and have been to the ER Wednesday night and Friday night for my heart beating too fast and skipping beats and not being able to breath. Both times my Potassium levels were low. I thought I remembered some people mentioning that they had consistant low potassium levels, or something along that line. I'm wondering if anyone else has low potassium or did have low levels, and if this means anything in particular. On a side note: My labs from the 2nd trip to the ER also showed that my liver isn't working right. The ER doc said it could be hepitatis (sp?) or medications messing with my liver. I called my doc and due to processing problems at the ER we're going to wait a few days and have the labs repeated. If they still show liver problems then I'm going to have an ultrasound of the gallbladder to see what it says. Thanks for any help or suggestions y'all!!

My doc says they're the nerves in the muscles not under control. I call it shaking and after talking with the doc and being observed by a cardiac tech that had some experience with degenerative nerve diseases in the back of the squad, we've figured out that they're actually NOT real seizures. They said it is the nerves basically acting on their own instead of being controled. It's another symptom of the autonomic system failure. Mine also gets worse under stress, or anything else that can/will trigger a NCS or POTS spell for me. Even good stress triggers mine. It usually get the worst when I'm having a bad spell or a migraine or bad NCS/POTS headache. If I try to control it or if someone around me tries to hold me still, it gets worse. I've found the best thing to do is stay calm, let the muscles shake/twitch, and try to imagine them relaxing. I've found that thinking about what is hurting or having trouble, thinking of it relaxing seems to help tremendously!! They've also run the battery of tests that we're all soooo used to getting by now and all of them show normal, nothing wrong, nothing abnormal, nothing unusual, etc. My doc says there's really nothing you can do for it other than to stay calm, try to relax, try to loosen the muscles--like getting someone to massage them, applying heat--like a heating pad on the area/s that are shaking sometimes helps too. A room-temperature soak in the bath while trying to relax seems to help for the really bad ones that go over the whole body. ??????? Does anyone else have a trigger-point where the shaking usually starts? Mine is my right arm. That is usually the first thing to start shaking. If it's really bad then my legs are what shake and it's all of both legs. They don't even shake in unison, they shake independant of each other.

Okay here's my two cents. I'm 21 and have been sick since I was 19. I got CMV Mono at college and within a few months, I never seemed to totally recover from the Mono, I was badly symptomatic of NCS/POTS. After looking back through my family and talking it over with my mom and the doctor we've figured out that it came from both sides of my family. My grandparents are dead and have been, but not from anything NCS or POTS related, so don't worry there. I was told when I was diagnosed that my case was heriditary and that my body had been able to over-compensate for the NCS and POTS until I got the CMV Mono which made my whole system so weak that it has not been able to recover. I was also sick as a child, had constant ear infections and strep throat many times. I was always at the doctor's office and it was nothing unusual to be there every week. I have had bad migraines since I was little, that my parents were first told was just sinus headaches becasue small children can't get migraines.-- That's what the doctors thought at the time, so right there you can see how things are progressing. In high school I had to have an altered workload because I was coming home with daily migraines that would last days to weeks at a time. After looking back with doc and my mom they figured out that I have been mildly symptomatic all my life. I just didn't know that everybody didn't get dizzy every time they stood up or moved. I was told that I will most likely pass this on to my children because it is heriditary for my family and that it is so strong in me because I got it from both sides. I hope this helps some and doesn't discourage as much as it probably will. Plus sorry for the misspellings!!

Hey I'm not on the board much because I feel like if I don't have anything new to say or any advice I'm not sure what to post, so I don't. But anyway I would LOVE to chat with people. My AIM name is UnicornIsis, my MSN name is Luna_Sekhmet, my Yahoo IM name is UnicornIsis. Feel free to add me to y'all's lists and I'll ad y'all to mine. I wish y'all good days, happy times, and lots of rest.

I think we ALL have a MAJOR case of brain fog!! I was reading over the posts and I noticed we kept saying something in common... that we would get to the event, usually pushing ourselves to get that far and end up leaving early. I know I've done it many a time. Have any of us ever thought of the obvisous solution that is staring us in the face? I know I haven't thought of it until now, which makes me wonder just how much of my brain is effected by all this! Why don't we go to things late? That way we would get to miss the LONG, BORING speaches and the waiting and waiting and waiting until it finally starts. If we all went late to things we would be able to see the good parts, the parts we REALLY WANT to see. Don't know if any of y'all are feeling the same way I am right now, but I'm feeling sooo out of it for not thinking of this a long time ago! I can't get the smilies to work or there would be one of me blushing and feeling stupid right here. Danelle, I think we were typing at the same time. I'm glad I could give y'all a look at it from your kids' side of things. That's why I wanted to respond to this one so badly!! And Sue, please tell your daughter CONGRATULATIONS!!!!! for me! What she did is a major accomplishment!! And she should jsut as proud of herself as you are of her!!

Sue, I am the child with it, at 21 I still consider myself a child. I got upset when I wasn't able to see all of my brother's football games this year and this is his Senior year. I may not even be able to see his graduation because it's supposed to be outside in the afternoon. My mom takes off from work every time to take me to the doctor and when I'm not doing well too. I understand how your daughter feels. But have you thought that her tears may not have been for herself because her mother wasn't able to see her get the award. Her tears may have been for you that YOU didn't get the pleasure of seeing her get the award. She knows you love her and that you do everything you can and More to be there for her. My mom got sick when I was in high school with something that was temporary but she missed a lot of family get togethers at the time and family is really important to all of us. Dad, my brother, and I would come home to find her crying because she had to miss it. Then I would start crying because I was sad that she didn't get do something she loved to do. That may be the same reason your daughter was crying, for you not her. Talk to her about it and see how she feels and what she says. I'm sure you have already done this, but I would suggest doing it again specifically for the MVP award situation. Here is something that may help for you at least. My parents went out and bought a digital camera. (They wanted to get a video camera but we just didn't have the money and we had a gift thing for the digital one.) Everything that I can't come to they take pictures of it for me. And anything that is outdoors, like family picnics, and really really special stuff my aunt uses her video camera to make a tape of it for me. Then when the family gets home they all sit down and watch it wtih me. That way I still get to be there for my brother or family or whoever or whatever the event is. They even went to dollar tree and got a lawn chair for me to sit in to watch videos that are of outdoor events. And at family parties the extended family sends food from the picnic with my parents so I get to eat it while watching the video and feel like I was there even more. They find something to "decorate me with" for each tape I watch, usually something from Dollar Tree. This is something you might want to try. It has really made a BIG difference.. for me and for my family. And on the tapes usually everybody says hi or has a message for me. That part never fails to make me laugh. They all try to be funny or do something stupid to get me to laugh so I'm not so sad over missing it. My brother doesn't let on that he cares about anything, but when I watched the tapes of his football games, they would wrap me up in the school spirit blanket so I would feel like I was in the stands and he would get up and start acting out the plays. It was so much fun and soooo funny. It never fails to cheer me up to watch the videos, even though I do cry a bit while watching them. And then I get to have that event permanently to watch. Sometimes when I'm feeling lonely or shut in Mom will pick a tape at random and pop it in and watch it with me. It never fails to cheer me up. I hope this helps you and your daughter!!

Good thoughts and prayers her and the baby's way! I want to say Thank You to you for being such a wonderful friend to her. I'm sure that means a whole lot to her and she'll need your support no matter how this turns out, but you already know that. Hopefully this time the support will be with a happy and positive attitude. I hope that y'all are able to have a big celebration at the end of this hard time.

I was put on Neurontin before I got my diagnosis by a neurologist who said I was hyperventilating and that was my whole problem. However when he made me hold the bag to breath in up to my face I would pass out after 15 seconds from lack of oxygen. He saw me do this in his office right in front of him and ignored it. So my problems may have been due to the care from this doctor too. I'm NOT telling you not to take this drug and I usually don't comment on medications since I'm soo weird with them, but I think you need to know how it effected me. I REALLY HOPE it works for you and doesn't do any of the stuff it did to me. But it had such an unusual side effect and the doc's office staff seemed to think it was a totally "normal" reaction that I think people who take it ought to hear what did to me. Like I said, hopefully it won't do the same to you and I haven't met anyone on here that's had the same problems I had, just people who went to the same neurologist I went to. When he put me on Neurontin I had a LOT of trouble with it. We weren't able to determine if it was effective or not because I had to stop taking it after two weeks of being on it. I was loopy the whole time, similar to Mighty Mouse, so much so that several times I couldn't even remember my own name. That was a bit much by itself. I started not being able to sleep at all and when I could sleep I was dreaming about people being totured and killed and ME toturing and killing people. I was getting horrible headaches too. I'm usually not like that at all, I'm warm fuzzy kind of person, not a n ax-murderer. I called his office after the first week and he didn't get back to me until 2 weeks after he had put me on it, a week after I had called him. His nurse was the one that actually talked to me and told me what to do. His entire comment was "uh huh. That's what it does. Stop taking it right now." He had already told that you had to step-down from it. I asked him about that and that's when he switched me over to the nurse. She told me that those symptoms were normal, the massive headache, not being able to sleep even though I was dead tired, and being psychotic on it was all "normal and expected." She said that was the usual effects of Neurontin and to go ahead and step it down for a week until I'm off of it. The nurse said almost everyone who takes it has those symptoms and wanted to know if I could deal with them to get the positive effects of the medication. I told her this stuff was making me want to pick up a kitchen knife and stab everyone around me to death. And this was the only medication I was on at the time. She asked me again if I though I could deal with that. I told her no, and she KEPT saying my symptoms were normal, but she and the doctor were hoping they wouldn't be as bad as they were for me or that I could live through them. Needless to say I don't go to that doctor anymore for multiple reasons. Like I said, I'm NOT telling you not to take it or that you will have the same symptoms I did, I haven't met anyone here who has had the same reaction I have. But the fact that the doc and his staff thought the reaction was so normal makes me feel very bad when I don't tell people about my experience with it, a pang of conscience kicking in there. I REALLY DO HOPE it works for you and it probably will. I hope this didn't scare you or anything, I really don't mean to, just trying to keep people safe and look out for each other. If anything I said bothers you, talk it over with your doctor.

I didn't vote because we have now figured out that it probably comes from BOTH sides for me. After looking at mom's family and then talking to the doc about things I have that dad's mom had he said it was probably in her too. So without proof, we say both sides. It's kinda hard to get the proof as everyone except my parents is dead. Ohh well!

Hey try Dr. Abdallah in Manassas. I know others here haven't had a good experience with him lately, but thanks to him I can now walk and am actually going out with my friends this afternoon for a bit. A year ago I couldn't do that. It's all thanks to him. I agree with Lucky Goat, Hey girl!, DYNA is a great place for us. I'm 21 and got sick at 19 without knowing what was going on. I didn't get my CORRECT diagnosis until the day after I turned 21. I haven't had to go through high school with it, but I did have to leave college because of it. beta-blockers have never worked for me, even with my migraines. The only thing that worked for those is Morphine to dull the pain enough to fall asleep and phenegran for the neausa. I'm on several medications now that didn't work for me a year ago. Dr. Abdallah as adjusted them and fit them together to work for me. There are several he wanted to put me on but couldn't because of the way my body reacted and how they would react with the ones I was already on. I am on Paxil. Another dr. put me on it, but Doc A has reduced it and it has helped with the depression too, even though that's not what it was for. I have never met Dr. Grubb, so I can't offer any advice or opinion on him. I suggest talking to the other DYNA members who have been through high school with this for help. Will you tell us what his DYNA name is? I mean his screenname that way those of us in DYNA will know who he is to be better able to help him.

I've done the reading now, thanks Mighty Mouse. I've checked a bunch of websites now too. I could just be looking the wrong places, but I can't find much on MVPS. Can someone tell me what the main thing for that over NCS and POTS is. I know now, after reading duh! why didn't I think of that on my own?, the main differences are rise and drop of the heart rate and blood pressure. But even reading the MVPS sites, I can't seem to find the main thing for that. I want to figure out if I have that too, or just the NCS and POTS. My doc, like I said, isn't sure yet and told me since I know my symptoms well enough, to go online my self an look it up and see what I think, then he'd tell me what he thinks when I come back to him. Thanks for all y'all's help!!

Would someone please explain the difference between NCS, POTS, and MVPS to me? From what I read it seemed like NCS and POTS would be mutually exclusive, meaning you would have one or the other, not both. But the doc I saw at Johns-Hopkins that diagnosed me, said I have both and the one I'm seeing now says both, NCS and POTS, but he doesn't want to say for sure yet and he doesn't want to rule out MVPS until he does some more testing. So what is the difference between NCS, POTS, and MVPS, and can you have more than one or all three at once? Are there any other types of dysautonomia, also? Thanks y'all!!

Might Mouse, wow. I'm sorry you're huritng soo much. At least some of the symptoms have stopped. I hope they figure it out on Thursday and you won't have to go through this again. Update us when you feel able to after your appointment on Thursday. I wait to call the doctor too. Luckly for my body I live at home still so Mamma will decide against me yelling NO! I don't need to go again!! that it's time to take me. By that point I usually can't talk so I have no choice but to agree, or more accurately I can't disagree at that point. I can't believe you were able to do homework through that. I'm trying to keep up with my 1 class, but when I get sick forget it! You're amazing that you can still work and do homework through all of this!!! Can you talk to the instructor and say hey, I'm sick, can catch a break and it turn it in later? When I first got sick my profs. didn't understand and thought I was just faking it. You get to step up on your self-pity soap box self-pity soap box all you want. Actually I would suggest lying down on it so you don't fall and feel even worse. Trying to make you laugh there. Hope it worked. I don't know if this will work for you, but sometimes when I just can't feel well and nothing is working and the meds are being unhelpful and so is the entire world, Ill run a bath of luke-warm to cool water and just lay in sometimes on my side so I can get the most of my body underwater. Lay some towels in the bathtub to lay on so it's more comfortable and you can stay in there longer. Let the water get cooler and cooler until it's cold. Have a towel for under your head too. I also turn the lights off and either have a candle burning on the top of the counter/toilet or plug a night light in for just a little bit of light. The cold and the dark and quiet really help and I can usually go to sleep after that. Sometimes I'll take my nightly dose of Benedryl to help me sleep before I get in the tub to help relax me even more. Hope this helps. I'm here for you if you need me. My shoulder is ready to be drenched if need be. HUGS! MP

Welcome. I had the same reaction the first time I came here to. Not too long ago actually. I cried and ran(figuratively speaking) and hugged my Mamma. She thought I was getting sick again, but I pulled her in here to the computer because I was soo overwhelemed at finding this place that I couldn't even talk. It's a truely WONDERFUL experience finding this place and everything being here does for you. Be very glad you have your husband and for everything he does for you. My ex-bf couldn't handle me being sick when he came home from the sandbox and it was even worse for him because he had to deal with what he had gone through too. Needless to say our pending engagement got called off before it even got made. All of our plans got shot down the drain and my hope for a new life and someone to take care of me and for me to take care of disappeared very quickly. I'm so envious of you for your husband. Please tell him from me, and many of us I'm sure, that I apperciate what he does for you and that I commend him for being there for you and helping you and careing for you. In my eyes he's a wonderful person for doing that! I'm trying to take 1 class at the local community college, I was in college when I got sick, I'm 21 now. Some weeks I can handle it, others I can't. I recently said I just want to be normal for one day, that's all. I know I used to say I didn't want to be normal, but this isn't what I meant! I'm a 21-year-old-girl stuck at home who uses a cane when she can walk and leave the house and the rest of the time lays on the sofa wiped out. I'm 21 and I can't even get out of bed some days and I don't even do anything to be tired for. We all go through it. They way I have come to look at it is this: as long as I can complain about it, it means I'm still alive. If I'm complaining about how bad it is now, that means it was better before and I KNOW it goes in cycles which means it will get better again, I may not know how long it will be before the cycle swings up, but it WILL. I know what you mean about the dishes. Now that I'm home all the time I feel like it's my duty to do the house work. Every now and then I can get up enough energy to fold a load of cloths, but it takes me hours to do it. Then Mamma comes home and I have to watch her do the same thing I did in about 20 minutes and while being tired from work too. I know most of what I have said is probably depressing, but I hope it helps you, really. Please get in touch with me if you want to talk. MP

Mom and I have been noticing and keeping track of as many triggers and such as we can. One that we've come up with is that guaranteed the last 3 Full Moons I've been worse, I mean horrible!! I think I was worse on ones before that too, but we have definit marks for the last 3 Full Moons. I'm a Moon child anyway. I love the Moon and always have. When I was little I was going to have 2 girls and name them Moon and Luna. I'm wondering if anyone else has noticed getting worse, or better, or anything different with the Full Moon. Or any phases of the Moon for that matter. The Full Moon can do a lot of things, a commonly accepted on is bring on babies. I don't want anyone to think I'm trying to be mystical about this. I do believe a lot differently than most people about things like that/this. But I'm seriously wondering if anyone else has noticed anything like this. I hope everyone is doing well and feels better soon. MP

ohh how aweful!! I feel for you really. When I was yonger in my teens I could pop my hips in and out of joint with no problem. I stopped doing it because I just kept thinking that somehow it was a bad idea. I saw Dr. Abdallah recently and he thinks I have EDS. After looking it up on the web Mom and I both think we do. My great-grandfather/mom's grandfather got stuck with his legs behind is head at 80 years old and they had to take him to the hospital because they were afraid to undo him themselves because he was so old!! The family loves that story and it's true. I pop my wrists and ankles all the time. I used to sprain my ankles like crazy when I was little and sooo bad too. My orthopediac surgeon loved me but could never understand how I could walk. Especially when I get up off the table with a majorly sprained and hyperextended ankle and turn my feet on their sides and walk around the room on the outsides of my feet with the soles of my feet facing each other. I'm telling you all of this hoping it will make you laugh some--without moving your jaw of course! Pretty hard to do huh? That's the only thing I really know to say for you. I'm one of those that get's tired of hearing you poor thing! so I figured I wouldn't say to you either. But if you want it I said it. I hope it feels better soon and gives you a break from the "Amazing Unhinged Mighty Mouse" Although if you're like me you might have to qualify that's it your jaw and not your mind that's unhinged! Hope you feel better soon and get it back into place to stay for a while. MP P.S. Mom says hi and she hopes you feel better too as she's reading this over my shoulder.

There are times, more and more frequently, when I just can't stop burping. It goes on and on and on. One time it lasted over an hour. And it's not regular burping, it's like it's a reflex that my stomach is having and can't stop. I've also noticed lately that sometimes after meals, I mean right after, I have to (if I could still run) run to the bathroom! It's horrible and then I have to keep going back for about an hour to an hour and a 1/2. I've only been sick for a year on March 14, and I'm 21. So I'm wondering if this is a GI problem realted to my NCS and POTS that has just taken a little longer to develop noticably. I've never had any problems like this before in my whole life. I've never liked milk, always made my sotmach feel fuuny, but now it's worse. And the last month I can't stand to drink orange juice. I feel like I'm gonna throw up when I try. I also can't take caffine anymore, I used to drink coffee all the time, but now, any caffine makes the NCS and POTS worse. Does this sound familiar to anyone? Does anyone know what this is or why? Thanks just for reading, I know this is gross stuff to talk about, but I've seen other people post about similar things, so I was hoping people wouldn't think me in bad taste for psoting about this. Thanks just for reading this, MP

You took the words right out of my ... mouth.... hands? I guess on the computer! DYNAKids.org is a great bunch of people. You just have to find the right ones that fit with you and your son. Since he's little he can be a part of the postal mail program instead of the computer group, so he can get letters and cards by mail, or e-mails for him can be sent to your e-mail, you would be reading most of it to him I expect, so either way would work now that I think about it. I would reccomend Dr. Abdallah, but he's in Virginia, and that's really far from the West Coast. He's a pediatric cardiologist, but also has children and adult patients with Dysautonomias, and his son has it so he knows and understands exactly what we're going through. He's a wonderful man. I hope you find someone closer to you to go see. Many of the symptoms you describe your son having are the same for me, and most of us I'm sure. I have vision loss all the time, especially when I get really dizzy. My family likes to joke about it because all 4 of us wear glasses and my mom always loses(sp?) her's. So the joke is when I "can't see/get spots/my vision goes black," when I'm like that they joke that I'm even more blind than my mom. The more we can joke about it the easier it makes it for them to accept it. It's hard for my brother, who's 18, but his way of coping with things is to joke about them. You might want to expect that from your son. I was in the day care program for 2 years at my high school and worked at one too. Plus I've helped raise most of my cousins. It's VERY tiring for a child to go through school. It's tiring on the brain and the body. With this it's even worse. See if you can get the teacher to institute a nap time about 1/2 way through class, or even just let you son have nap time if she doesn't want to do it for the whole class. That will give him to regenerate. Is she won't agree ask her to let him sit or lay by himself somewhere quiet with something he likes, a favorite toy, stuffed animal, or blanket--something quiet that sooths him and makes him feel safe a secure. Just that quiet time and safe feeling will give his system time to rest for a little bit. Maybe she could let him do that at the end of lunch. Our teacher used to make us put our heads down on the desk and be quiet with the lights turned out for 5-10 minutes just after lunch. Suggest that to the teacher. See if she will let him keep a non-caffiene(sp?) drink BOTTLE--not a glass that can be spilled on his work or cause a distraction, on his desk or in his desk, but within reach at all times and let him constantly drink from it, but she also has to let him go the bathroom a lot his he's going to be drinking a lot during those 2 hours of class. The best way I can think of to tell you to help him get through class, is to treat it like it's an all day marathon class for you. Think of what you would do to fortify yourself to make it through a class like that. Then add your son's symptoms and limitations into that as if it was you who had it, not him. Then take that and apply it all to his 2 hour class, but not looking at it as 2 hours, looking at it as the marathon class from He--. I hope this helps!! If you want to talk, feel free to e-mail me or whatever. Please let us know how your son does. It might help him to come on here and have you type a short post for him saying "HI!" to the people here, who he is, and some of the things he enjoys, likes to do. Then we can respond back to him saying hi and some of the things we like to do and that it's great to meet him!! You can read him our responses and that might help him to know that there are other people out there like him and who understand him. Just a thought.... MP

I'm on Paxil now, Dr. Calkins at Hopkins put me on it 6 Dec. He recently upped it to 30mg a day from 20 becasue it wasn't doing as well. It's still not doing any better. The only thing I notice since I started taking it is not being able to sleep well, but that may just be me, I don't know. It's lessened my symptoms about 10% of 100%, but that's it, barely noticible for me. I ask Dr. Abdallah about it on Thursday and he said to stay on it, becasue that may be one that he ends up giving me. Also, don't just stop it, this one you really do have to decrease it slowly. When I as a school last year there was a girl there that was on and decided to stop taking all her meds one day. She already lived on was called the Psych Ward, but she went nuts for about a week. It was really bad. I don't know if that's every body, or just her. When I went to my PCP and told him what I was on, he said "you can't just stop this one, usually I tell you if it doesn't work to stop it and you know what you're doing so I let you alone with your meds, but with this one you have to promise me that if you decide to stop it, you will gradually step it down or it can really mess you up." Hope this helps, and hope you're feeling better!!

I saw Dr. Abdallah today for the first time! He says I am a good candidate for the treatment!! I even almost passed out in his office and he was able to show mom and dad something new to help with me. I was really sick the whole ride home which was just over 2 hours bafore bathroom breaks. He said it was due to the Cytolamega Virus Mono that I got back in Nov. of 2002. He wanted to see me back in 2 weeks for a third TTT with more specialized equipment than the first two times I had it done with other people, but the soonest they could work me in is April. He's going to hopitalize me after that to get things worked out and my meds worked out. Even though it's April I can't wait!!!! I'm so happy!!! Mom was even more excited than I was and Dad totally understood and believed the guy and TRUSTED him which is totally rare for Dad. Okay, really tired now, so I'm gonna go. YEAH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!