it sounds like you really really need to get that checked out by a doctor

Do you also have sleep apnea?

I have had it checked ny a cardiologist - though they have found various eptopic beats they haven't managed to catch the episodes I described above.

I don't have sleep apnoea (have been checked for it)

The cardiologist and the sleep consultant both seem to think that its my meds making what they consider 'normal' eptopic beats worse.

My sleep consultant has suggested that we should discuss me coming off provigil for a while to check it out (but that would mean months) - I'm not sure i could face going back to what I was like before.

I was hoping that some other may have experienced the same thing - just to put my mind at rest.

I have had heart problems, and suggest that you talk to the cardiologist about a halter monitor. My attacks happened in my sleep, and I didn't even know it until my sleep study... when I was woken up by the sleep tech, and many paramedics and police! I went into tachycardia during my sleep study, and never even knew....I ended up having heart surgery. Not that this is your problem, but the fact I never knew it was even happening was scary. You definitely need to get it checked out! I remembered in the past I woke up to funny heart beats, and contributed it to a nightmare, or stress...to be on the safe side, get it looked into.

I realize this is an old discussion, but did you ever get anywhere with your arrhythmia problem? I have a similar problem (and narcolepsy...) and it has prevented me from taking any stimulants. I also have episodes of very fast heart beats while waking in addition to skipped beats (PVC's and PAC's) during the day. Had all of the tests, and it is supposedly benign. My resting heartrate is also very low due to years of athletic endurance training and racing.

gruel

No I never got to the bottom of it. I know there is nothing wrong with my heart - I used to road run when I was younger and have always had a relatively slow heart rate.

But I am noway fit now and carrying loads of extra weight - I've tried to explain to the cardiologist that its the rythmn / beats that are the problem - they can picture my heart from all angles and its fine but do they listen?

I think it has something to do with the narc & Cataplexy, as the area of the brain that is not working properly is in the hypothalimus which also has an effect on hormone release/ blood pressure/ heart rate / body temp.

My sleep consultant is more interested now that I have started taken venloflaxin, as it is contra-indicated with heart arrythmias, I'm due to go see him in a few weeks, and will have to tell him the latest developement which is swollen ankles - sigh.

Though if my theory is correct then I don't know what the answer will be..

You say your fast heart beats are on waking (mine too mostly) have you taken your pulse when this is happening? My pulse is relatively normal even though my heart is beating very very fast - I think the medical term is atrial flutter but am not sure.

Noseycow, I've been having the same heart probs that you described for 10 yrs now. A cardio did every test in the book and found nothing wrong, didn't even pick anything up on 24 hr heart monitor. It even landed me in the hospital 2 yrs ago; still, no reason for it.

Just recently, my neuro sent me to a cardiac electropsychologist. He did a "table tilt" test which caused me to have the probs I've been trying to explain for years. I failed it miserably and was diagnosed with Postural Orthostatic Tachycardia Syndrome (aka POTS) as well Atrial Fibrillation. Look up this info online and see if it describes what you are talkig about.

How this cardiac guy explained it was...the usual cardiac tests like EKG, ECHO, Stress test, etc will not pick up this condition, only the "tilt test". Ask your cardio to do the "table tilt" test. If he won't, then have him refer you to someone who will.

POTS is caused when a part of the autonomic nervous system in our bodies is messed up. Well...the hypothalamus is part of that system. Like you said, it regulates heart rate/pulse. The good news is that this particular heart condition is not life threatening, only uncomfortable :)

As far as your heart goes.. I know that I and many others are allergic to GLUTEN AND MSG. You really should research what you eat. I have this idea that the symptoms of Narcolepsy happened to protect us from the damaging effects of excess sugar consumption. Cut out Monosodium Glutamate and Gluten and see what happens....

Yah, I'm highly allergic to MSG but not gluten. MSG does a number on me! Nasty stuff!!

This is all very weird because I have Aortic Valve Insufficiency (that runs in my fathers side of the family) which iss enlarging my aorta right above the valve...But I have had this wierd arrythmia for years actually probably 8yrs...when my Neuro thinks I first got Narcolepsy and when my cataplexy symptoms started!

My cardiologist was never able to find the arythmia I have been describing although I have worn the 24 hour monitor along with a monitor I wore for a month i believe! It happens all the time (but the monitor never picked it up) so I may suggest the table tilt test to him to find out whatsreally going on!!!

Its good to have others to talk to about Narcolepsy because most of the things that have happened to me medically over the past 8 years or so have been explained just by talking to everyone on here...I am so thankful I found this site...Thanks to all of you!!!

Gruel/LHG/Sleepy

This site is amazing isn't it - I've found explainations for maost of my 'oddities' on it - and have suggested to a friend of mine who is a doc involved in cataplexy research to read hear - because many of us suffer symptoms that aren't recognised even by the sleep specialists.

LHG - are you having any treatment for your POTS?? or any for the AF?

sorry to be nosey...
x

You're not being nosey at all...ask me anything.

For my POTS, I was told to increase my fluid intake and salt intake either by adding salt to my food/eat salty foods/drink beverages like Gatorade or take salt tabs 3x/day, and avoid prolong standing. My cardio had me immediately start wearing waist high compression stockings (knee or thigh high ones won't work). Even though they are annoying to wear, they have helped to do away with the severe muscle pain in my legs & difficulty with walking which were due to the excessive blood pooling in my lower extremeties/abdomen. Not all POTS people have the muscle/walking prob, just the heart stuff only. My cardio gave me a prescription of Midodrine which is a med for POTS, but so far I've not had to use it.

As for the A Fib prob, I'm presently wearing a heart monitor for a month (only 2 more weeks to go) to see how severe my A Fib is and to see if controlling the POTS will correct my A Fib. If I still have the A Fib, then I'll be prescribed a med for it.

Hope this info helps :)

Hi Noseycow,

Your hearth arrhythmia is from Monosdium Glutamate. Its in all packaged foods.. Just stop eating it and it'll go away.. Sorry it isn't in the official "research" but I'd be my life that it is MSG...

2. Anyone who has cataplexy is their own research. Doctors will never cure HIV, Cancer, Diabetes, Cataplexy...etc.. only you can.

Actualize, it seems avoiding MSG apparently has help you; that's great news!! However...that isn't the only cause for all heart arrhythmia problems. I am a HUGE health nut myself and eat only organic fresh fruits, veggies, nuts, and fish...no processed foods and I still have arrhythmia probs due to POTS.

My heart probs started up after I had a bad case of Epstein Barr over 20 yrs ago, but no doc would take me seriously since I was so young and athletic. Unfortunately over time it got worse, & for the past 10 yrs I've been trying to get some help for it. This virus apparently did some damage to my arteries & circulatory system. When the cardio who recently diagnosed my POTS tested me for certain viruses that can cause POTS, the Epstein Barr virus showed up, showing that I had had it once, which of course I knew.

Also, the hypothalamus is defective in N patients. The hypothalamus is part of the central autonomic nervous system, which controls things such as blood pressure & heart rate, which can cause some N people to experience heart arrhythmias.

I'm only letting you know this in case in the future you should have any heart probs. Be mindful that the reason for the prob might not only be diet related and you make sure you get yourself checked out.

Take care. Warm wishes to you~*

LHG /Actualise

Thanks for your responses, I hardly eat any prepackaged foods, the occasional packet of crisps - so its unlikely to be that, though i do think my diet is affecting my other N&C symptoms.

i looked up POTS, LHG and its spooky to read all my symptoms after years of alternatley thinking that I was going to die in my sleep or that it was in my imagination.

It has made me feel TONNES BETTER, I will print out some info and pass it to my sleep consultant next time I see him.

Thanks again.