Sports

• By meg12col
• Posted July 10, 2007 at 11:17 pm
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Hey. I was diagnosed with LQTS six years ago. Like you, no one in my family had it or shown signs of it, so it came to a surprise to me being that I was 14. I also take Nadolol and right now i'm considered borderline or just above that. I was told I couldn't play competitive sports and that i could paly for fun. As long as you take your medicine and have regular checkups with your doctor, I don't see why you wouldn't be able to play softball. You just have to make sure you don't exert yourself too much and stop once you get tired or out of breath or anything heart related.

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• By katiesoftball26
• Posted July 11, 2007 at 11:38 am
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Hey well thanks for your response. It just seems so weird that no one has ever shown any signs or anything about it before. I mean I've never really shown any signs. I passed out on a treadmill once, but didn't really even know that i had done that until later. Initially I went to the doctor for headaches and then all of this started showing up and it was just completely out of the blue. It's just crazy that they are saying that I can;t play sports and stuff because like when i feel my heart like funny, even when it goes away in like 10-15 seconds, its not during sports that it happens. I just don';t get why they are pulling me from sports. it just doesn;t really make sense to me. i am going to see an athletic cardiologist in cleveland ohio soon, but am still afraid of what he is going to see. like what kinds of sports do you/did you play that your dr. told you you couldn't play anymore after this. because i mean track, basketball, soccer that is a lot of running.. but softball.. thats a little different. we saw online these "heart rate watches" do you think something like that would work?? if i tried wearing those while playing and if my heart rate got above a certain level then i would stop? about nadadol, has that ever made you sick? because i have been quite a few times when i first started it and initially weening off of it for a test. have you had any spells while on it? sorry about all of the questions but thanks again for your help and support. =]

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• By meg12col
• Posted July 12, 2007 at 12:23 am
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I noticed something was wrong when I was 11 because after running a lot in gym, I would have this pain in my chest that would last for a couple hours after having gym. After that, I had three seizures technically in two years even though it comes out to three in three years (one each in 1999, 2000, and 2001). I say two years because I was in sixth grade when I had my first one and in eighth when I had my last. I also experienced migraines for about two years and eventually the nadolol stopped them altogether. In my case, it was soccer, but that's more understandable because there's a lot of running in soccer, even during drills. I have heard that people with heart conditions can play sports for a certain amount of time (in basketball I heard that it is 15 minutes for the whole game), but once again there's a lot of running in that too. I don't consider softball/baseball to be a highly exertive sport, however your doctor might see differently. Symptoms can evolve after playing sports; what I mean is you can be perfectly fine during the game and not afterwards. Don't be scared to see the athletic cardiologist, because he might just tell you that you can play softball in moderation and to just be careful. Like if you expereinced any weird or funny feelings in your heart, you would have to stop playing. Getting a heart rate watch probably wouldn't be a bad idea; at least then you would know when to stop or not. I do work out (light exercise) and if I ever feel lightheaded or whatever, I know that's my cue to stop. Nadolol never made me sick; for the first couple of months, I would get tired more easily from it, but eventually I got used to it and it doesn't affect me anymore. While on nadolol, I have not had any seizures with it (thank God) , but I do occassionally experience dizziness, lightheadedness, or a sharp pain in my chest every once in awhile, but it usually doesn't last long. Sometimes it feels as if my heart is beating fast or some weird feeling in my heart, but I usually just take a couple mintues to myself and calm myself down (taking a couple of deep breaths usually does the trick). For a little while, I was on another medicine, toprol, but it does the same thing as the nadolol. I had that when nadolol was temporarily unavailable due to high demand in the states, but that one also didn't make me sick or anything. I'll also get weird.funny feelings in my heart when I'm doing anything that exerts myself or the like. I can just get them when I'm just sitting in a chair. They used to scare me at first, but I became used to it. The past couple of times that I've gone to my cardiologist, lqts hasn't shown up on my EKG. Around last summer, I was put on a monitor for about three weeks to see if my dizziness and the rest of it were related with lqts. I ended up having no symptoms during that time, but it did show up on an EKG that it was connected to. One time around last year ( I forget when), my lqts was worse than it had been, but it's not so bad anymore. I have moments when I'm perfectly normal and times when I experience a lot of symptoms. Good luck with the athletic cardiologist and with the nadolol.

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• By katiesoftball26
• Posted July 12, 2007 at 11:33 pm
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hey just some more random questions for you. Sorry, being new to this i have many of them. Ok, back to the migranes.. funny story, basically the reason that they caught this on me was because i was having all of these jeadaches in the back of my head. They ended up calling a chiari malformation which is basically my brain hangs too low. Usually its asosciated with spina bifida but i don't have that, but it was like extremely borderline is what they said, but anyways i ended up getting a head ct and later a mri done and it came back and showed nothing and i saw a neurologist and everything and basically they wrote it off to nothing. now im wondering, would this have anything to do with lqts? probably not, but you had like kind of the same thing too right? and just another question like how does having lqts affect your life today? like do you work out all the time? do you have to tell people at work/school? how was high school and such with it? if you don't mind me asking, do you have a boyfriend, like does it work out or is it weird because of lqts? im sorry, if these questions are too personal don;t worry about answering them, its just hard to think about how different my life really is going to be adding this into the mix, because you have this perfect life planned out and then dumb doctors have to go and find stuff wrong with you. i know im looking at it the wrong way i should be looking at it like he is saving my life by telling me this, but all i see is him saying no more softball. end of story. thanks again for all of your help, because it really is helping me through this. =]
katie

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• By meg12col
• Posted July 13, 2007 at 1:51 am
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i don't think that your headaches were because of long qt. Migraines for me run in my family, which is kind of strange. My grandfather got them, my mom started getting them when she was six, my brother started getting migraines when he was six, and they didn't start for me until I was 13. I always thought I got my migraines because of family history or because of stress. Symptoms started coming up in 6th grade and even after I had my first seizure, I didn't really think that much about it. Sometimes seizures can occur for no reason and you can have one and be fine for the rest of your life, so that's what I thought at that point. After having my second one, I started to get more scared and by the third, I was really scared. It didn't help that all my seizures happened in public places. I had my first one in school, my second down the shore (Jersey), and my third at a pizza store. I ended up having anxiety attacks for awhile and then in the beginning of eighth grade I started with migraines. I would get migraines about twice a month and sometimes they would last a couple of days. I should also mention that the year 2001 had a lot of stuff happening. I had a seizure, getting migraines, graduating eighth, starting high school, Sept. 11, and my uncle died suddenly and that's only a brief listing. So I thought I was stressing out and that caused my migraines. lqts doesn't affect me too much today because i'm more used to it and i understand it better than i used to. i try to work out three to four times a week, but if i ever show any symptoms, i stop and take some time off. i can't stand the heat anymore; betablockers make you sweat more, but that just means i have to wear a hat in the sun. The hat also prevents migraines also. School officials had to know, as well as employment personnel should know also. nothing might happen, but they have to know just in case something happens. freshman and sophomore years of high school were kind of hard to deal with. i didn't know that much about it, i was still very anxious and scared that i would have another seizure, and i was on monitors for those years, also. they were to see what was happening when i had symptoms. i didn't tell that many people; i basically only told my close friends and they had no problems with it. i don't have a boyfriend, but when i do get one, i hope he is understanding and doesn't get weirded out. i'll worry about that part later. Glad that i'm helping you get through this.

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• By katiesoftball26
• Posted July 13, 2007 at 12:46 pm
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wow. that is crazy. i can definitly understand all the stress and everything. i mean i don't plan on having any seizures any time soon, but what happend when you did? and this was related to the qt? and when your working out, what kind of symptoms are you noticing. because the ones i have noticed have just been like it feels like my heart is just working really hard and it will make me real dizzy and my eyes go black. is that the same kind of things? when you say school officials had to know, like who were the ones that you had to tell, all of your teachers? school nurse? principal..? how did most of your friends react whena you told them. because ive only told a select few and theyve all basically freeked out because of looking it up online and seeing the words "sudden death". did you do pe and such in high school w. lqts? im sorry, so many questions, i just feel like i know absolutely nothing about all of this.
katie

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• By katcarn
• Posted July 13, 2007 at 7:51 pm
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My son who is 16 years old was diagnosed with LQTS a couple of months ago. We just got a letter to take into school from the Cardiologist saying that he can't runs laps, lift weights or climb the rope in gym. I will be making an appointment to discuss this condition with the Principal. Is there anything particularly I need to tell the Principal. Is there any information that I can give him regarding LQTS. I'm having trouble convincing my son about gym... he doesn't want to be taken out of gym......

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• By meg12col
• Posted July 14, 2007 at 4:15 pm
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This is going to be long, so I'm going to respond in several parts.

Part One
Seizures
March 1999 - had first seizure in class; while taking notes, my vision all of a sudden got blurry. I didn't think much about it at first, since i wear glasses and sometimes they get fogged up and i just have to wipe them, but it was getting worse. I was scared to tell someone and didn't even know if i could because it felt like i couldn't talk; that's the part that made me scared. that's all i remember until i came to, but teachers and the classmates said that i fell out of my chair and seized for several minutes. When i came to, I was on the stretcher the paramedics were using to take me to the ambulance while between flights of steps. I knew where i was and knew who the poeple were around me (my mom was with me because my brother had to call her and we passed my principal and kindergarten teacher on the way out), but I didn't know what had happened until later that night when my mom and my brother told me (my brother was in 8th grade that year). I was taken to the hospital where they set up an iv and after some time gave me a mri of the head. shortly after that i was sent home. it happened on a Wednesday and my principal allowed me to take the next two days off. some friends visited me over the weekend and i was a little anxious to talk to them, though. I was very scared to go back to school on Monday because I was embarrassed and I was scared that I would have another one. I did have to go through lots of tests for the next couple of weeks after that, including an ekg, stress test, and a heart like ultrasound thing (i forget the technical name for it, but it's like doing an ultrasound for a pregnant female, except it focuses on the heart). Anxiety took over for a couple of months, but eventually things went back to normal until July 2000.

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• By meg12col
• Posted July 14, 2007 at 4:39 pm
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Part Two
Seizures continued
July 2001 - second seizure occurred; my family and i had gone down to the jersey shore for the day. we were watching rides and then turned to go the other way and immediately i got the same type of feeling i had before my first one. I can't really describe that feeling anymore unless i have another one and i'm hoping i don't. anyway, i knew what was going to happen this time and out of instinct i guess i grabbed on to my mom's arm because i was afraid of hitting my head or something; supposedly i had a pretty strong grip, but i don't remember that. she tried to lead me to a bench a couple steps away, but i had gone almost completely stiff and i wasn't able to move. That part scared me because i got stiff before i lost consciousness and i had a lot of thoughts running in my head. i eneded up going into a seizure again and two people walking by stopped to help and got the pier paramedics. he did put an oxygen mask on me for a little while i guess. i kinda came to on the boardwalk when they were rolling me across the boards, but i officially came to in the ambulance when it was already moving to the hospital. the paramedic in the back was nice to me and even told me she had seizures herself when she was younger and i felt that she could relate to me. i didn't talk too much though ( i tended to be tired after the seizures and i also tended to keep to myself after them also just to give me some time to think. it was kind of lonely at the hospital because only one person was allowed in the examing room with me and my parents took turns; my brother didn't want to because he doesn't like hospitals and doesn't like to visit people in them either. I did have to have another mri and a couple hours later i was released with orders to talk to my cardiologist and neurologist in Philly. I had more tests for the next couple of months, including a tilt table test. Basically the point is to make you have another seizure or event so they might know what is causing them. you stand upright on a table with an iv for about twenty minutes the first time around. Then they insert a drug that makes your heart rate go faster. They told me it would feel like i just got done running for awhile, but it actually hurt a lot and it was very uncomfortable. It felt like my heart was going to burst out of my chest; that's one test that i never want to go through again. I didn't have an event, though i had a dizzy spell because my blood pressure got too low. But now that i look back on it, maybe i got dizzy because of the long qt. i was definitely more scared and anxious after the second seizure and was frustrated because i didn't know why i was getting them for. this is about when my anxiety attacks started. i would have these panic attacks in malls and anywhere that was crowded. it was a hard time for me, but i got through it. I had all tests for both heart conditions and epilepsy, but everything came up megative and after my first seizure i was told i had a heart murmur, which i believe was the long qt. everything was then fine again until February 2001.

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• By meg12col
• Posted July 14, 2007 at 5:06 pm
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Part 3
Seizures continued
February 2001 - third seizure happened at a local pizza store; my mom and i were waiting for our dinner to get done. i looked at the clock and the next thing i knew i got the same feeling back as my previous two. i told my mom and she asked one of the workers to help her get me seated at a table the next room over. that's all i remember until i came to. i do remember her talking to him in the beginning. supposedly i did walk to the table and sit down and then i stood up and sat back down and some other things my mom told me. after a couple of minutes she told them to call an ambulance and the paramedics walked me over to the medic unit. i was told i was completely stiff and very pale. when i came to, i was in the hospital and they were trying to put a gown on me, but i kinda remember i didn't want anything to do with it. a couple hours later i had a catscan and soon released after that. By this point, I was really getting annoyed, frustrated, angry, and fed up with everything because i had no answers and i was scared about dying before anyone found out. i still continued with my anxiety attacks and the migraines had started right before this one. the next week i saw my pediatrician and he told us to get a second opinion. i was referred to chop (Children's Hospital of Philadelphia, a renowned hospital in Philly). i once again had to go through a round of tests for my new cardiologist and neurologist, including mris and another stress test. i remember going to my cardiologist for the first time and they had done an ekg. when the doc came in the room, he said he thought i had lqts. I was actually more relieved at this point because i felt that we were getting somewhere, but it was a little nerwracking too because we never heard of lqts before. a couple months after that meeting, i had to stay in the hospital overnight for some brain test my neurologist wanted done, even though my cardiologist was opposed to it. See, the thing was, my neurologist wanted to diagnose me with epilepsy even though the test results came up negative; she was basically convinced that i had epilepsy because she thought all my symptoms matched and there were lots of disagreements between my cardiologist and my neurologist. right before i was released, the diagnosis of lqts was confirmed and i was immediately put on nadolol. like i said before, it was little nervous/anxiety at first because i still didnt really understand what lqts was, but i did a lot of research on it and i started to become more familiar with it. I was still scared that i would have another seizure while on the medicine and that fear lasted a couple of years before i became used to it. i still think that way today but i don't let it control my life. the whole process was extremely hard, but i knew it happened for a reason and that's what kept me going. it took me about two to three years to get passed it after the diagnosis and i didn't really talk about it that much during that time. one more things, i'm getting back to something, instead of having what i called a heart like ultrasound thing, it was called an echocardiogram.

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• By meg12col
• Posted July 14, 2007 at 5:16 pm
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Part 4
Working Out
once again, i do light to medium exercise a couple times a week and i know my personal limits. that may be different for you. usually with working out, i sometimes get lightheaded or have like a squeezing/stabbing sensation in the middle of my chest. if the latter occurs, i stop automatically and take some time off. the lightheadedness usually goes away by hydrating myself with water. i do experience those symptoms also when i'm not doing much of anything either. I do get dizzy once in awhile, in which i get a stange sensation feeling in my chest, the room spins, and i see black or white for about half the room. i tend to get a little anxious after i experience those, but i cope with better now. the key to exercise is knowing your limits and knowing when to stop.

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• By meg12col
• Posted July 14, 2007 at 5:33 pm
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Part Five
School and Friends
School - Your teachers, the school nurse, principal, and student services officials should know. If something were to happen, they would know what to do and the teacher would call down to student services to have them call an ambulance. It helps if you explain to them exactly what you have and tell them medications you are on. That's the info that they need to know.

Friends - I first told a close friend when i was a sophomore and she was cool with it. I was hesitant at telling people in the beginning because i was afraid that they would freak out or feel sorry for me and i didn't want that to happen. As my junior and senior years passed, I told several more of my close friends and they were fine with it. I told them about it honestly and i think they respected me for that. if they had questions, they knew they could ask me and i would answer to the best of my ability. i respected them because they really understood the situation and my feelings about it. I got lucky in that field. i'm not in college right now, but when i do start, i might be a little hesitant to tell people at first, but i probably would end up doing it. Sudden death freaked me out in the beginning too, so after awhile your friends will probably get over that.

School-
Gym - I had gym in grade school for the two years that it was going on for, but i just had to take it easy. I didn't have gym in high school, even though i thought i should have. in my school, in gym you were taught how to play frisbee and how to dance the latest styles as well as the old ones. I wouldn't have been able to do everything in gym, but i could have done some of it. That was my own school's ruling, not my own, so i had no choice but to skip out on gym.

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• By meg12col
• Posted July 14, 2007 at 5:42 pm
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This refers to Katcarn
You have to tell the principal as well as the school nurse exactly what lqts is, what symptoms does he experience, how often he has those symptoms, and medications he is taking, in addition to what he's not allowed to do in gym. If you are not familiar with what lqts is yet, you can get a brochure from http://www.sads.org and you can even get a couple of them and give them to the principal, school nurse, and his teachers. That's what my family did and my teachers liked the fact that i was able to explain to them what is lqts and give them a brochure also so they got a better idea of what it is. Your son might be able to still have gym, as long as he does no strenuous exercises and the like. If he would experience in gym, he would have to stop doing that activity at once. He won't be able to everything, but he should be able to do some thins and have fun at the same time.

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• By katiesoftball26
• Posted July 14, 2007 at 7:28 pm
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all I can say is wow. you have been through a ton. and i cannot even imagine what that must have been like. but for you to be able to deal with going through all of that and still be able to talk about it and be able to tell me your story and help me through mine, is nothing less than amazing. and i just really really want to thank you for everything. even though ive never even met you you just seem like a really all around good person.
okay and now back to my 5 millionth question. =] ok so how did you go about telling all of those people at school. i really liked the idea of a brochure that you were telling katcarn, it seemed really smart and i will probably end up using that idea. the thing is that i don't know when to go about doing so. do i come right out and tell them the first day? do i wait a week? do i tell them on email? how did you go about it, or how should i? what about when applying for a job ?(though i know this is completely for more later in life) again, did you come right out during the interview or after acceptance and such. because heres the thing. i don't to scare people away, like my teachers and such. i don't want them, or friends, to treat me different because of it. you are amazing. =]

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• By katcarn
• Posted July 14, 2007 at 9:23 pm
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Thank you for the great idea regarding the brochure to take to my son's school ~ excellent idea!

Also to katiesoftball26, my son feels the same way... he doesn't want anyone to treat him any differently... that's why he doesn't want to miss gym... so you are not alone on how you feel.

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• By katiesoftball26
• Posted July 14, 2007 at 11:14 pm
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good to know. that is probably my biggest thing, having to sit out and have to watch everyone else. does he play sports and such? hey i'm not trying to be like an online freak or whatever but if he ever wanted someone to talk to i will definitly always be here, because it wouldn't only benifit him but me too. it would kind of be nice to talk to someone whos going through the same thing, at the same age. im not a creep i promise. does he have aim??

hey by the way you can just call me katie =]]

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• By meg12col
• Posted July 15, 2007 at 1:26 am
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yes, i went through a lot, but i always thought i would find out what was cuasing everything. To be honest, i kinda sheltered my life for about two years after the diagnosis because i didn't understand it at first and i couldn't relate to anybody about it. I also was scared that if i told others, they would have treated me differently and like you, i wanted to be treated normally. what i'm telling you is the most that i've ever told anybody, even my family. i don't mind telling you about it at all because it feels good to be able to help somebody through it. so you're welcome and im really glad i'm doing this for you. i really don't want anybody to go through what i went through or even if they have it worse than mine.

i was just starting high school at the time, so my mom called them up a couple of days before orientation about it. when i did have orientation, i had to tell the disciplinarian about it (student services officials should know0. then the school nurse just asked my family to fill out a medical form about it, so it could be on record in case anything happened; you will probably have to do the same thing, basically you just have to say what you have, any symptoms you've had or do have, how long you had it for, and treatment for it. I had to fill out a new form each year to keep it up to date. in my freshman year, the school nurse told my teachers about it, so i didn't really have to do anything. it wasn't until sophomore year that my family decided to tell them myself, even though the nurse did anyway and give the teachers the brochures. i had wanted to tell them myself anyway because i felt i could explain it to them better. giving my teachers the brochures enabled them to know more about in areas that i couldn't. my first two years of high school, i had a lot of event and holter monitors that i had to put up with and the school has to know if you have to have any monitor for any period of time. i was able to talk to my senior teachers more than the other ones i had the years before because i had more time to do that. one of my teachers i had my senior year was in her twenties and she liked that i gave her the brochure because she got a little freaked out when i first mentioned i had lqts.

it is best to tell your school on the first day. my teachers always found out before any classes started, so they knew what to expect. you should sit down with the principal or school nurse first because they should know immediately; they're the ones that will be paying the most attention to you during the year, so it's just better to tell them first. you could tell your teachers yourself or the school nurse could tell them. that depends on how comfortable you are with ttalkking about it. when i told my teachers and the school about lqts, i did think that they would treat me differently, like always keeping an eye on me, but that didn't happen at all. i had a lot of tough teachers and they treated me normally like everybody else. i only had one teacher who treated me differently. in freshman year, i had this nun who was always freaked out about the heart condition, even though i'm sure the nurse told her i would probably be fine anyway, and she gave me a little trouble when i had to have the monitors. trust me, once they understand it, they will treat you like everyone else; they might be a little anxious i guess at first but they'll treat you the same.

i don't have a job currently; i've applied for jobs in the past, didn't get any though, so that issue never came up. i will however be applying for jobs soon. some companies will ask if you have any medical issues on their applications, so i would tell them then and explain it to them at the interview. some don't ask that on their applicatios, so i will probably tell them at the interview. i guess it would depend on the job you're applying for if they would treat you differently. that was one of issues when i was applying for jobs before because i didn't know when it would be appropriate to tell them. obviously, you would want to apply for a job that wouldn't have you doing anything really strenuous. i'll let you know more on this when i apply for jobs next month.

one of the hardest things i went through was seeing if people would treat me differently because of my lqts. one grade school teacher was a little scared around me because i was in her class when i had my first seizure, so i know it had to be difficult for her, but she eventually got over it. so other than her and a freshman art teacher everyone did treat me normally. i never wanted to be treated differently or have people feel sorry for me. I have accepted what i have since day one and i don't let it control my life or the people around it.

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• By meg12col
• Posted July 15, 2007 at 10:39 am
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one more thing, you can ask all the questions you want, however, i'm going away today until friday, so i won't be able to get back to you as much. just be patient with me until friday.

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• By katcarn
• Posted July 15, 2007 at 6:44 pm
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Hey Katie, I would never think you are an "online freak" that is what this forum is here for. I would love you to converse back and forth to my son. I'll let him know but don't hold your breath... you know how guys are... they don't like to talk about things like this. He used to play baseball, but when he got to high school he felt he wanted to concentrate on his studies and it's a good thing because it's a lot of work!!! He loves sports, baseball and football and he's doing golf which the cardiologist said was fine to do. He can't runs laps in gym, lift weights or do the rope. He will be getting his wisdom teeth out in the hospital instead of the oral surgeon's because of LQ... that's coming up.

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• By katiesoftball26
• Posted July 15, 2007 at 8:00 pm
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haha well thats funny because im leaving friday for north carolina. haha. well i guess well talk more in a couple of weeks.
i know your shocked, but guess what, more questions. ok so sophomore year like in comparison w. freshmen year, which do you think was better. like in such the way that you told your teachers, you telling them or the nurse telling them? and then ok, im gonna be a sophomore and we have sophomore swim where we swim for pe for an entire semester. do you think ill be able to do that? and back to that whole sudden death thing... have you like heard of that happening to anyone, i mean like after they are on medicine for it. because i mean its like i really don;t see that happening to me. i know i know famous last words, but still, it just doesn't seem real you know?
i'm really glad that i could be the one that you open up to. its just nice to hear that other people have gone through what i am now and to be able to talk about it. so again, thanks

katcarn - well i just wanted to make sure you didn't think i was "one of those people" but really if you can ever convince him to talk to me, whether its aim, facebook, myspace, or however. let me know and i would definitly love to do so.

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