View Full Version : I'm Not Add after all


Iluvpoptarts
07-04-08, 08:55 PM
I have narcolepsy, a life-long sleep disorder which causes. amongst other things, add-like symptoms. its also why ritalin helped me.
i took provigil today, and it was amazing. No side effects whatsoever. Its not addictive. i was alert, tuned in, and my mood was great.
This drug has been tested and proven to treat add too (and depression), but the FDA only approves the usage of it for sleep disorders.
Just wanted to let you guys know.

Imnapl
07-04-08, 08:59 PM
Thanks for the information. Just recently I paid a visit to a hospital emergency ward and was asked what medication I was taking. When I mentioned Ritalin, the nurse asked if I had narcolepsy, a first for me.

scarygreengiant
07-04-08, 09:42 PM
Emergency room? What happened? I hope you're okay and healthy.

Imnapl
07-04-08, 10:49 PM
Emergency room? What happened? I hope you're okay and healthy.You are very kind, but it was nothing serious. We have a doctor shortage here and when you can't get into the clinic, you go to the hospital. I was lucky because it wasn't busy - very unusual.

curseandablessi
07-05-08, 05:47 AM
Great news!! A diagnosis and some meds without side effects. Glad you're doing good.

Imnapl, glad you weren't at the ER for something serious.

Michiko74
07-06-08, 03:09 AM
Hey it's not always ADHD. But I'm glad you got the right diagnosis!

inquisitive
07-08-08, 05:40 AM
that's great to hear you got the correct diagnosis, and are able to be helped with the right treatments.

how do you feel about having been misdiagnosed? :confused:

Prusilusken
07-08-08, 09:43 AM
Congratulations, Poptart!
It's great that you've found out what's wrong and how to treat it,
and that the medication does not have side effects on you, that's just brill!
Happy for you! :)

How did your doctor get the suspicion that you were misdiagnosed?
I mean, especially because the Ritalin helped you, it must have been kinda hard to do differential diagnosis.
Did you have any suspicions yourself?

sloppitty-sue
07-08-08, 12:36 PM
Ya PopTart - I am very curious to know how your dx of Narcolepsy was determined (if you feel comfortable sharing . . . I know it's personal - so if you're not comfortable I understand). The reason I'm curious is because the same thing happened to an acquaintance of mine, and the way she told me she'd discuss her symptoms and get a dx from her doctor I found extremely strange. So just wanting to compare.

Plus - I saw a documentary on Narcolepsy on PBS a few years ago and the Narcoleptics they featured . . . well, let's just say there is NO WAY that these particular Narcoleptics would go undiagnosed or un-noticed. And they never stated that these were especially SEVERE narcoleptics . . . just that this is what Narcolepsy (in general) looks like.

So when my friend told me that she told the doctor that she feels so sleepy - like when she's driving - that was IT! Then - boom - here are your Narcolepsy pills. My friend seems to just read about a condition, think she has it to some degree, tells her doctor about her similar symptoms, and leaves with medication for the condition. This happens EASILY without much time passing for her. I'm talking like she reads about the condition to she's popping the pill ALL WITHIN ONE WEEK! So weird to me and NOT MY EXPERIENCE at all. (It took me OVER A YEAR AFTER an ADHD dx to find a doctor willing to TREAT ME for it.)

Sue

TygerSan
07-09-08, 04:48 PM
Plus - I saw a documentary on Narcolepsy on PBS a few years ago and the Narcoleptics they featured . . . well, let's just say there is NO WAY that these particular Narcoleptics would go undiagnosed or un-noticed. And they never stated that these were especially SEVERE narcoleptics . . . just that this is what Narcolepsy (in general) looks like.

I think narcolepsy can vary quite a bit in severity, and not everyone has cataplexy (where you lose muscle tone during the day) . . . but you do have to have a certain level of sleep disturbance (parasomnias, sleep paralysis) and excessive daytime sleepiness in order to get the diagnosis. (also, narcaleptics tend to go into REM (dream) sleep really easily and quickly, so sleep onset test can help w/the diagnosis).

Interestingly, though, one of the treatments that works for narcolepsy is GHB at night. Not sure anyone knows why a drug which causes sleepiness and coma would be good at treating a disorder which causes sleepiness, but who knows.

QueensU_girl
07-11-08, 06:19 PM
re: #4

It's too bad to hear you have to go to an ER to get care, IMNAPL.

Yeah, so many parts of Canada have MD shortages. [Except, say, here in big cities like Toronto.]

The Doctor's unions (CMA, etc) block Nurse Practitioners from setting up independent practices and urgent care clinics. (NPs can do 85% of what MDs do.)

And we have not educational system (besides the military) for creating Physician's Assistants (PAs), as they have in the USA.

Treating someone in the ER for a primary care health problem is so wasteful and people 'fall thru the cracks' (no continuity of care when a person has to see multiple caregivers).

Iluvpoptarts
07-14-08, 08:33 PM
Congratulations, Poptart!
It's great that you've found out what's wrong and how to treat it,
and that the medication does not have side effects on you, that's just brill!
Happy for you! :)

How did your doctor get the suspicion that you were misdiagnosed?
I mean, especially because the Ritalin helped you, it must have been kinda hard to do differential diagnosis.
Did you have any suspicions yourself?

Yes of course.
Here's how it felt with ritalin to me: When i was tired it was like turning the light on when its dark, big diffrence. But when i wasn't tired all i felt were bad side effects and no help whatsoever.
Another suspicion arised from me being tired, uncontrollably tired at times.
I noticed nobody else yawns as much as i do.
I would be absent from school way more than normal people.
I had hallucinations at night when i woke up and sleep paralysis (at the time i didnt know what they were) ect..
I was awefully tired and functioning very badly in general..

Iluvpoptarts
07-14-08, 08:51 PM
Ya PopTart - I am very curious to know how your dx of Narcolepsy was determined (if you feel comfortable sharing . . . I know it's personal - so if you're not comfortable I understand). The reason I'm curious is because the same thing happened to an acquaintance of mine, and the way she told me she'd discuss her symptoms and get a dx from her doctor I found extremely strange. So just wanting to compare.

Plus - I saw a documentary on Narcolepsy on PBS a few years ago and the Narcoleptics they featured . . . well, let's just say there is NO WAY that these particular Narcoleptics would go undiagnosed or un-noticed. And they never stated that these were especially SEVERE narcoleptics . . . just that this is what Narcolepsy (in general) looks like.

So when my friend told me that she told the doctor that she feels so sleepy - like when she's driving - that was IT! Then - boom - here are your Narcolepsy pills. My friend seems to just read about a condition, think she has it to some degree, tells her doctor about her similar symptoms, and leaves with medication for the condition. This happens EASILY without much time passing for her. I'm talking like she reads about the condition to she's popping the pill ALL WITHIN ONE WEEK! So weird to me and NOT MY EXPERIENCE at all. (It took me OVER A YEAR AFTER an ADHD dx to find a doctor willing to TREAT ME for it.)

Sue

Your friend's a smart person then. Yes, use common sense but don't wait too long, every day is precious!
I just felt that something was wrong way beyond "Add", .. I knew it was bigger than that, i know ADD people but none of them are tired like me. So i asked my doc for a sleep diagnosis.
At the sleep diagnosis i had a chat with one of the doctors and some staff and they told me the official terms of what i described (hypnogogic hallucinations, sleep paralysis) but of course they did not officially declare (that would be illegal) that i am narcoleptic. I did my research online.
I do not have catalaxy but i have most other symptoms.
The results take a month and i just couldn't wait that long, i wanted to function.. I just started a summer job working in a day camp with4 year old kids and i wanted to succeed at it and my narcolepsy would suck all the fun out of it so i "took a chance" and decided to start treatment before the results came in.
I went to a psychiatrist i know and he prescribed my provigil.
I kinda lied to him, and said the doc told me in these exact words it is narcolepsy.
Anyhoo, the psych said it is very likely to be narcolepsy, since sleep paralysis and hallucinations are related to narcolepsy and it made sense.
So now im taking provigil and its amazing :]
I even slept 4 hours last night (out of choice) and was able to function very well today.

LeeAnne
07-22-08, 03:04 AM
I'm not ADD either. My dx was thrown at me. I am not sure why. I tried to agree with my doctor on where she was seeing this. But she had me in front of another doctor and they were talking of me as if I was not there.

I wanted to believe my doctor was playing some smart trick on me. But she wasn't, and given her dx was done in such haste I decided not to have her as my doctor. I just don't have ADD.