cut /paste...chemically related to amphetamine, that acts as a mild stimulant of the central nervous system and is used especially in the form of its hydrochloride for the treatment of narcolepsy in adults and hyperkinetic disorders in children....Most of the meds my sons been on chest pains, bp goes up, pulse high. hes jumpie, heart racing,cramps in neck,chest pains, feels like hes going to jump out of his skin..as for heart problems none..dr thinks hes crazy ..Keep on Venting let it all Out ..

Hey My name is Krista and I'm a student at Daemen College in Buffalo, New York. I am currently taking a class on Navigating Rare Diseases. As part of our class, our professor asked us to talk with patients online in a discussion group. If you are willing to talk to me, that'd be awesome... I'm trying to learn about your condition (outside of the textbook pages). You need to vent.. and I am willing to listen and learn :) If you're interested... it is easier for me to respond quicker via email. email me at: kpalermo@daemen.edu ... hope to hear from you soon!

Kly,

Sorry your son has to go through that and have doctors not believe him. It's tough when doctors don't listen.
I got pretty lucky with my doctor finding my heart arryhthmia. I started noticing my heart rate would jump a couple weeks after an operation I had back in '08. I went in to see my family doctor to check in and told her what I had felt. She wasn't too concerned till I told her it was happening a couple times a week and a couple times a day. She did an EKG right in her office and took one look at it and said I had to see a cardiologist that week. One said it was this another that it was that. Ive just been dealing with it on my own but that's no longer really possible.

Have you or he started keeping track of when he notices the cramps or racing. LIke dates times current activity? Sometimes having that for a doctor to look at will get them to pay a little more attention but not always. I keep a log now of when my heart starts acting up.
Something he can try is to make himself cough when his hearts racing or hurting, its a vagal maneuver that can help the heart to calm down.
Hope your son finds a doctor who listens to his and your concerns.

Thanks.

I use to let him keep the stickies they put on for the EKGS.. he would take them off at home..he put them his bathroom wall ..moving time..well sticky stuff does not peel off well without taking the paint off..now the stickys and prep glue leaves rashes/ itches ..along with the EKGS blood work for dope /drink of course all neg lets not for get the last test included a pregO test..4 Drs later just started on a 5th when he got his ssi.. between Drs until we can get off his state med-cal to just plan med-cal so we can get to stanford medical center (dragging daughter kicking too).. he goes to an urgent care for the small things and the hospital for the big things..chest pains started right before the cataplexy..EKGs MRIs cat scans without contrass becauses hes allergic to contrast..found out the hard way..EEGs.ultert sound Xs2. 2, 24 hour things they strap on you..we have 2 blood presser things ..the small one for traveling.. guess he dont like to play by the books..been there done that with keeping records cant find a connection and the%&^$ Drs said it just incurring him to play the sick game.. sort of glad your Dr found the problem with the heart..hope you find a plan to get it under control..will pm you...

Hi. I had heart problems before I was diagnosed with narcolepsy and for the first year or so afterwards. I was undiagnosed for over 20 years, mostly because I overcompensated like crazy and stopped complaining about sleepiness after a doctor bitched me out (she said if I'd never done a residency I could never know true exhaustion, and told me never to complain about sleepiness to a doctor again. Dr. Laura Kimball in Seattle, in case you need to avoid her). Anyway, my heart issues turned out to be related to my narcolepsy, or rather, to my coping mechanisms. My involuntary response to sleepiness was to generate adrenaline to combat it; in my case through anxiety (the other methods are through exertion or stimulants). I wasn't even aware of doing it, but everyone knew I was a giant ball of stress (a very productive one who kept getting promotions, unfortunately -- it's why the diagnosis got missed for so long). It was basically the same as taking too many uppers, at least regarding the effect on my heart. Once I got diagnosed, my doc started me on Provigil, which made me ten times as anxious and also caused weird muscle contractions. He reluctantly switched me to low doses of Ritalin (methylphenidate is one of the generic names for it), and I suddenly felt normal (it was the weirdest feeling to feel normal, something only another narcoleptic can understand). Anyway, after a year of the Ritalin and not having to stress out all the time, my heart got better. Completely. It's still fine. Obviously your situation may be different, but you might want to consider that your heart problems are related to your unconscious mechanisms for coping with sleepiness. Please don't think I'm suggesting it's your fault -- I am NOT one of those smug "If you had regular enemas this would never have happened to you" weenies. I'm just saying that Ritalin was exactly the break my poor overworked heart needed.

Thanks for the reply Handymic.

I'm glad that you're in a great place now with the right diagnosis and medications.

Sadly my EKGs show that there is something wrong with my heart. A stint wearing a holter monitor just provided more evidence. The docs to think that the N is effecting it.

My sleep doc tried me on nuvigil when i was first diagnoised but my heart couldn't tolerate the first dose. I went on from there without any meds because of my heart condt. My heart is very sensitive to any type of stimulant. I learned to deal with it the best I could.

Finally A few months back I went back to my sleep doc since I just couldn't take in any longer. The always being exhausted and the nightmares. She tried me on a low dose of Ritalin and it's been a miricale drug for my N. It's like you said "I feel normal again".

The only problem now is that my heart has been showing major signs of distress. It's been worse since before I started the Ritalin so I'm hoping I don't have to give it up. My heart rate never seems to drop below 100 and I've caught it going 164 a few times and other speeds in between.

I've already failed on two different types of medications to control my arryhthmia so I'm not sure what the next step will be. I was told once that if you fail in two different types of meds the next options usually mean surgery and possibly a pacemaker. I'm not sure how I feel about that but I know that it would be so nice to not have to deal with it anymore.
I don't think my parents, mainly my mom really understand what it's like. She just keeps telling me it's in my head and that if I just forget about it and keep moving it'll go away, it's been since '08 so I doubt it's going to just go away.
The racing and PAC's are uncomfortable but I can manage them, it's the near fainting that can happen that scares me. It's like the lights go out and my heart is either beating so fast i can't clock it or its going so slow that i can barely feel it beating at all. It's one thing to fall around my house or friends and family but it's another if i'm out and alone or driving.

Hopefully the cardiologist will be able to help me figure something out. I already know I'll have to wear another holter monitor and i'm not looking forward to that but it's gotta be done.

Hope you keep feeling good!
And you're right other PWN are the best at understanding what it's like.

Your situation sounds awful. People without a chronic illness don't understand how consuming it can be, as much as a full-time job -- not just managing the symptoms themselves, but adjusting schedule, activities, sleep cycles, diet, exercise habits -- EVERYTHING! -- to see if it helps, and the whole time you have people either implying or telling you outright that whatever is wrong with you is within your control, so you have that constant guilt at not coping better. It's similar to the pathological guilt of rape or fatality accident survivors -- believing it's your fault is a way of feeling you have some control when you don't. Your mom ain't helping. What is the cardiologist doing to pinpoint the problem with your heart? Is it a faulty valve or weak spot or something blocked? Have you identified anything that triggers your episodes, like eating? I'm not going to ask about the obvious -- exertion -- or the universal medical scapegoat -- stress ('scuse the anger here for a second, but in my opinion, doctors are far too quick to blame vague or complex problems on stress --basically saying the patient is just too mentally unstable to handle something that wouldn't bother a stronger person, thereby dumping the burden of management back on the patient and walking away whistling), but either your heart has a defect (which they should be able to identify), or there's another process going on. Stimulants aren't causing the problem, obviously, they're just making it worse by making your heart work harder. So... when is the cardiologist going to tell you what the problem is? Gastroparesis, intermittent clotting problem, lung insufficiency -- it's gotta be something. Of course, it could just be stress (pat pat, patronizing smile, backing out of the room). Remember you're not allowed to hurt a doctor for ducking behind the stress diagnosis, but you're allowed to imagine a good slap upside the head when it's deserved.

It has its good days and bad, although the bad seem to be more frequent lately.
I've seen 3 cardiologists, none of which has been able to definitively say what's wrong with my heart, just that there is something going on. A cardiac echo showed no physical problems with me heart so that's good.

The leading, incomplete theory, is that for some unknown reason my heart rate jumps out of control. The thought is that the body's natural pacemaker is malfunctioning.

I had one doctor tell me that it's really nothing to worry about, the look i gave him well, lets just say it wasn't very ladylike and the image of a hand slapping him up the backside of his head did cross my mind.

I know that stress effects it, it is not the cause of it. My mom had palpitations about a year back and thought it was the end of the world. Her's really did turn out to be only stress and she hasn't felt it since. So she'll be like "i know what you're talking about and it'll go away." I'm always sitting there thinking "yea sure mom whatever you say". I actually stopped complaining about my heart acting up because she got so tired of hearing me say anything that now even though it's obvious she thinks i've just changed how i'm doing something because i was doing soooo well before, NOT.
I haven't noticed any triggers because it'll go off without warning with no reason what so ever. I do know that standing up or a change in my position of any kind will usually cause an episode.

The doc will probably have me do another cardiac echo and then wear that dang holter monitor for 48hrs. Then it'll be wait and see what those tests say and then what the options are. I really hate the waiting game though.

I feel a bit ridiculous asking this -- I mean, you've seen a bunch of specialists and I'm sure they would have looked for this -- but have you been checked for endocrine issues? I don't just mean thyroid, I mean adrenals, because that sounds like a problem with adrenaline production. Some doctors write it off as anxiety, but I think I remember reading about an autoimmune explanation related to ischemia (blood flow changes or gets cut off and the endocrine system overreacts). I could be remembering it wrong (or heck, even making it up for all I know, since I can't cite a source). What is your blood pressure doing during the episodes? You can get a little wrist cuff blood pressure monitor pretty cheap at the drugstore; if your blood pressure shoots up when you stand after resting (rise in systolic of more than 20 points, and/or rise in diastolic to above 100), it could indicate an overreaction of the body's natural adjustment mechanism. I don't know how that would be treated, and it would be a cruel trick for nature to play on a narcoleptic, but it's something to check out if you haven't already done so. As for your Mom -- she could be MY mom in her reactions. Mine was seriously pissing me off, but it turned out she felt so helpless seeing me feel crappy that her response was to do the "there, there, dear" thing -- she wasn't trying to reassure ME that everything would be okay, she was trying to reassure herself. A narcoleptic (or any chronically ill person) has to deal with that awful sense of no control; it's the same or worse for the family (if they care, and your mom sounds like she does). My poor mother just had no idea what I was dealing with, all she saw was the outside of me, tired and trying to keep up but physically normal, so that in the back of her head she was sure I'd be fine if I just TRIED a little harder. I finally made her stay up all night once, from 7 am to 7 am, not even a nap or coffee or sneaking a Sudafed. Then I told her that her day was just starting. She could have a nap at lunchtime, for ten minutes, in a moving car with people talking all around her, but other than that, she had to function, no excuses, no complaints, no sympathy or understanding. I told her that I had to function with my brain in that state of exhaustion EVERY DAY! She was better after that.

Hey HandyMic

I just saw your post.
I've been to my cardiologist and have been diagnosed as having POTS, Positional Orthostatic Tachycardia Syndrome in addition to my arrhythmia. I'm doing a tilt table test next week to confirm what he's sure about. POTS is basically that when i sit up stand up or change the position i'm in my blood pressure bottoms out so my heart has to overcompensate to keep the blood flowing.
The thing I'm having a hard time with is that he can't really treat either problem with my heart now.
If he gives me anything to help slow and control my heart it'll make the POTS worse to the point I actually lose consciousness.
The treatment for POTS is not something to do if the person has high blood pressure and arrhythmia like myself. So I'm stuck. I don't know what to do.
Being a narcoleptic was enough and now this....
I don't even know if i'll be able to hold a job if i finally find one.
I feel like what kind of life can i ever hope to live now. . .