Posted 18 April 2008 - 07:17 AM
i know it is difficult for both of you at this age, he wants his independence and has now found that he has this condition and you want to help your son in any way you can because you are a mother and thats what parents want to do.
I know it sounds trite but talking about it really helps, so this is the board for you and your son - if either of you ever want to chat or have questions then don't hesitate to ask - it is what we are here for - I am also the moderator on a different board for people with narcolepsy - so if you have any questions don't hesitate to e-mail me or whatever suits you
i know it doesn't seem like it now - but things will get better
Posted 18 April 2008 - 12:14 PM
I was formally diagnosed at 14 (or 13). I am now 25. Back then there was only heavy stimulants and I couldn't handle the side effects. Also they didn't understand N like they do now. N ruled my teenage years. I slept through school, causing me to fail 7th and 8th grade. I was super smart and aced all of my tests but never completed my assignments and slept during in school work. I finally, about to be 16 in 8th grade, begged my mother for help. We learned of an "online high school". Acctually, my boyfriend knew the principal. Well here goes. . . .
I bought my high school diploma. (Again, anonymous right?)
I have never admitted this to anyone.
I never set foot in a high school. I left at 16 with a great GPA and a High School Diploma. I wanted so much to be able to work and support myself, as all teens do. I wanted to go to college. I never would've made it out of middle school.
I AM SOOO NOT ENCOURAGING THIS ROUTE TO ANY OF YOU TEENS!
I was lucky to have a supportive boyfriend. We moved in together, and he would help me during my attacks. Though I have to admit, my first CATAPLEXY attck in his presence scared the hell out of him. He rubbed Ice all over me to try to keep me conscious!
We moved in together after graduation, got married and pregnant (actually it was baby then marriage) and are now happily married with 2 beautiful kids.
I did go to college. Slept through a lot of it. But graduated with Highest Honors.
But now again, after all this, I desperately need treatment. I have been off my meds for 9 years.
MSLT was 2 days ago. Waiting for results. I can't go back to work without help. The last doctors I worked for thought I was a junkie. . . slurring, passing out, auto behavior, tiny pupils during attacks, late for work, and sometimes too tired to go at all. I had a horrible sllep attack in the Operating Room once, technically more than once, but only once did I have to run out of there. That must've looked great for me. Scrubbed, masked, and gowned, holding bloody scissors, and leaving in the middle of surgery to lay on the hallway floor.
I hope you all recieve proper treatment. I hope I do to.
Posted 18 April 2008 - 02:03 PM
Keep positive on the provigil. It's got a good track record around here. I take it, and I like it a lot. Something I would keep in mind is important that he gets out. Don't expect the provigil to fix everything. Lot's of activity during the day would be a great thing now that he's started it. This could be a very good time for you and him.
Besides! I don't know about where you are, but all I see outside is Sunshine...
Posted 03 May 2008 - 12:33 PM
I found what you were saying about being diagnosed szicophrenic(?) to be particularly interresting. My son's great grandfather & grandfather along with many members of his fathers family have been diagnosed with szicophrenia. His father diagnosed with szizioeffective disorder.
The Neurologist we have had these past few years changed & increased his medication pretty much each visit we've made to him. My son does not have Cataplexy. Long story short, the last visit, doctor wanted to increase the adderal again. I said to him that it's time we do something different and he send us to an Indianapolis doctor that specializes in sleep disorders. It was brought to my attention immediately that he was on way too much Adderal. He was taking 160 mg a day. Does anyone else take that much. He will be having an MRI this evening and is now on 60 mg of Adderal & 400 mg Provigil. He has taken Provigil in the past and it wasn't helpful. He is now also sopose to have one day a week of "wash". Meaning that he doesn't take any medication one day a week. He slept the whole day & night of course. Anyone that might have this same experience, I would love to hear from you.
facts: I am 69 yrs old
first symtoms in 9th grade (14)
mis-diagnosed several times until 35
During that time I learned to manage my systoms without drugs. I could sense when an attack was about to arrive...a 2 - 4 min warning. At first the warning was an 'aurora' around the head like epilitics have,then became a mild sense of disorientation and now yawns. I would retrat into the bathroom, sit down and lean my head against the wall and let the dream occur, about 15 minutes. I developed a distrust of drugs and suggest you do so to. Get a Physicians Desk Referance (PDR) your pharmisist will have one and probably let you use it. Look up the drug prescribed, read the ENTIRE entry. There will be info the doctor didn't tell you. Look for side effects and contraindications. Don't entirely trust the info. It is written by the manufacturer who is selling the product. look elsewhere also, online, health newsletters etc. If your child can do with less dope please cut it down. Have him experiment with coping tactics. He may be able to develop some that work and will feel more in control of his life.
Sorry for the length, they don't call me rant boy for nothing