Title: Introducing myself
Description: Introducing myself
Mitzi - January 15, 2009 02:17 PM (GMT)
Hi everyone! I'm new to this site and new to narcolepsy. I believe my 15 year old son has N. We are still in the process of diagnosis, but he has had EDS for years. Needs tons of sleeps and wakes up exhausted. We had an overnight sleep study done which ruled out apnea, RLS, etc. Did not do the MSLT because he was already on some medications for ADD and Bipolar disorder. Those would affect the test. I think we have accidentally been treating the N with stimulants for the ADD diagnosis. I'm wondering if anyone else was mistakenly diagnosed with bipolar disorder before discovering the Narcolepsy. Or, maybe my son has both? He's had extreme mood swings, suicidal depressions, anxiety, low energy and low motivation, social isolation. It's been really rough, especially since he started high school this year and it starts so early!!!! That is when things went from bad to worse. We have an appt. with a neurologist/sleep specialist in a few weeks and hope to get a more definitive answer. Also, do any of you have any low thyroid issues? My son also has borderline low thyroid. I'm sure that contributes to the sleepiness. It's so sad that he sleeps half his life away and is missing out on the fun he could be having as a teenager. He started Provigil a few weeks ago and it is helping. Thanks for listening.
sam.toombs - January 16, 2009 12:21 PM (GMT)
i know that when i was younger i suffered rather badly with depression, i have had some docs tell me that a lot of people with N have the same problem, it is probably due to the situation that we face but it might also be a medical side effect - i am not sure but there are a lot of people that have both.
i can't speak for low thyroid problems because i have never had that issue - as far as i can tell anyway - i think i would have found out by now if i had.
As far as the tests and things go - aren't they fun? seriously though - they are not the best tests to be honest and i was once told that people who have classic narcolepsy symptoms but do not give the correct results at tests should not worry - the doc told me this tells us more about how bad the tests are then it does about anything else.
you are probably right about the ADD meds - i was treated with ritalin for my narcolepsy for years but it didnt exactly sit well with me towards the end but i know that is what they treat ADD sufferers with as well so you probably have been helping out that way.
hope this helps
Mitzi - January 16, 2009 12:58 PM (GMT)
Thanks, Sam. That does help. At what age were you diagnosed vs. when you feel you started having symptoms?
I love your picture on your profile!!!!
sam.toombs - January 16, 2009 01:08 PM (GMT)
i first started to get the symptoms when i was about 16 (i'm 24 now) - i had my first cataplexy attack upon recieving good news about my exam results ... and i had been sleeping a lot but then it started to get worse.
i was diagnosed by my GP when i was about 18, diagnosed again at 19 by a neurologist (and at 20 by his protege neurologist)and again when i was about 22 by a different neurologist ... my current neurologist though does not bellieve that i have narcolepsy - though he is slowly coming around to the fact that it is a possibility that the others might have been right.
but i am in England nad i am at the mercy of the whims of the NHS so that is probably about as much explanation as i need to give.
Mitzi - January 18, 2009 12:58 AM (GMT)
Sam- Thanks for sharing your story with me. Do you mind if I ask what medication you are using? Thanks.
sam.toombs - January 18, 2009 05:26 PM (GMT)
not at all mitzi
i am currrently on 10 mg of modafinil which is useless but for all intents and purposes i am being rationed - i am not allowed more than 1 prescription a month and each prescription only gives me 30 tablets so i as close to being drug free as you can get on drugs.
my current doc does not believe that i have N so i am being rationed and i cannot do anything about this until april so i am basically justhoping that it doesn't screw me up too much but why should my doc care - its not his life he is screwing up - its mine and i'm just a patient so i dont count!
yes that was a bit of a rant
Toph4er - January 19, 2009 02:39 AM (GMT)
Wait...only 10mg of Provigil? I didn't think doses came that low...why even bother?
And Mitzi...I have been reading this but I've been in the kind of state of mind where I forget what I'm going to say by the time I can scroll down and type it...so sorry about that >.<
sam.toombs - January 19, 2009 11:30 AM (GMT)
and by 10 - i mean 100mg ... i think it is a different drug i am on that is at 10mg so i always get them mixed up - i am sure i have had this conversation with someone before regarding my bizarrly low dosage!!
incognitoblue - May 13, 2009 05:17 PM (GMT)
"He's had extreme mood swings, suicidal depressions, anxiety, low energy and low motivation, social isolation. It's been really rough, especially since he started high school this year and it starts so early!!!! " - Mitzi
During my early stages of EDS, after two months of this, I was prescribed ritalin in which "shocked" causing me to have a low thyroid, due to the dosage causing me to gain weight, you would not believe how I jumped from 5'1" to 5'8", 103 lbs to 183 lbs during those two months...thanks to my first doc. I was already in the middle of a growth sprut since I was only a teenager. This was also a time in my life when a star teen athlete went from participating in summer sports including summer league baseball, assistant coach to lil league, casual community basketball games and band practice to literally just sleeping, wake up eat, go back to sleep routine. All this transpired just as I was a sophomore in high school. I dont think I was mis-diagnosed but the meds is what I had to watch out for. I had many episodes of mood swings, especially when I had other people picking at me for always sleep. As a word of advise, make sure if your son has a best friend, help him understand that there are people around him that will support him in his time of crisis.
"i was diagnosed by my GP when i was about 18, diagnosed again at 19 by a neurologist (and at 20 by his protege neurologist)and again when i was about 22 by a different neurologist ... my current neurologist though does not bellieve that i have narcolepsy - though he is slowly coming around to the fact that it is a possibility that the others might have been right." - sam.toombs
Its amazing how many docs you had to go through to really get the logistics of your situation. I know what it is like to go through three docs over a two year time frame.