Posted 09 October 2007 - 09:04 PM
Hi my name is Chrissy in Colorado and I have recently been diagnosed with Narcolepsy and Chronic Fatigue Syndrome. I have been having symptoms for about a year now and finally they have diagnosed it. It is a very confusing thing to deal with sometimes I feel pretty good and then bam it hits me I can not stay awake. My family has been incredible trying to understand what is going on with me and helping me learn to deal with it. I found this site when I was looking up info on Narcolepsy and I am hoping to find a local support group. Thank you all for your stories it is helping me to understand more about it and that I am not alone.
Posted 10 October 2007 - 07:30 AM
Posted 10 October 2007 - 09:56 AM
Posted 10 October 2007 - 04:32 PM
Posted 14 October 2007 - 11:35 PM
Don't forget to "join" Narcolepsy Network, you get more information and the quarterly newsletter has lots of information in print! You can share it with family that doesn't understand...or just leave it on the coffee table for them to "find".
Posted 15 October 2007 - 07:37 AM
I am just trying now to gather information and try to live a somewhat normal life whatever that may be.
I am on provigil I have only taken it five days so I can't say if it is working or not.
Its nice to be chatting with people who knows from experience what I am going through.
I think my husband still thinks I am nuts!
Posted 15 October 2007 - 05:19 PM
Posted 15 October 2007 - 08:18 PM
Posted 17 October 2007 - 04:52 PM
My care is being managed by a sleep specialist at a university sleep clinic near my home. My medical doctor was relentless in sending me to specialists to find the source of my constant fatigue. My cardiologist determined not heart related (although she did find I was anemic. I went to a psychiatrist who told me my symptoms were sleep deprevation related, not psychois (truly, a relief!). A couple weeks ago I reluctantly began seeing a counselor. My medical doctor recognized how down I'd become over not working. The counseling helps so please don't miss that opportunity. I've been off work since May 11th, my job has now been posted so I won't have that one to return to when/if I'm able. What I am dealing with that causes the anxiety is all work related. I'm 48 and never planned to stop working this young. I take 400mg Provigil two times a day and Concerta 72mg once a day. Falling asleep is my biggest problem and hasn't been able to be controlled.
What I want to say to you is lean on your family for support because they sound great. Mine has been wonderful but it is all new for them as well. Educate them along with yourself. Print articles that you find helpful. Explain not only what you feel, but how you feel. Expect for things to even out for you while planning what you will do if they don't. Like the old adage Hope for the best but plan for the worst. We are in your corner and walk in your shoes. Write when you need to and best wishes for the great future that still can be yours!
Posted 19 October 2007 - 04:38 AM
Posted 23 October 2007 - 02:11 PM
I WAS RECENTLY DIAGNOSED WITH APNEA THOUGH ALL THE CHECKLISTS POINTED TO NARCO. I'M NOW GETTING SIGNS OF CFS (CHRONIC FATIGUE SYNDROME - OR HOWEVER YOU SPELL IT - LOST THAT CAPABILITY ALONG WITH C.R.S.) THOUGH EXTREME INSOMNIA HAS COME ON IN THE LAST FEW MONTHS.
I'VE USED A CPAP FOR APNEA FOR A MONTH WITH NO CHANGES.
I'VE USED PROVIGIL FOR A COUPLE YEARS WITH SPORATIC RESULTS :arrow: GOOD DAY OR JUST SLEEP ON 400MG. ISN'T THIS SUPPOSED TO BE FOR NARCO?
I'VE HAD CHRONIC FATIGUE BEFORE, BUT THERE WAS NO WAY TO DIAGNOSE IT THEN. I THINK I'M GETTING IT AGAIN. THE BEST WAY TO DESCRIBE IT IS IF MY HOUSE WERE ON FIRE, I'D CHOOSE TO GO TO BED THAN TO LEAVE THE HOUSE. IS THERE A WAY TO DIAGNOSE CFS NOW?
I'VE BASICALLY BEEN IN BED FOR 3 YEARS, AND HAVE GONE FROM A ACTIVE SOCIAL LIFE TO A HERMIT/SHUT-IN/NUT HOUSE BOUND, WHATEVER YA WANTA CALL IT. ANYWAY, NO QUALITY OF LIFE.
EVERYONE OUTSIDE OF OUR 'SLEEPY REALM CHAT'' , JUST THINKS I'M CRAZY.
- MY BEST BUD CALLS ME 'JOE VAN WINKLE'
- I WAS GIVEN REQUIP RX AND MY NEIGHBOR WOKE ME UP IN HIS OWN GARDEN, MUD DRIPPING FROM MY MOUTH
- WITH THIS CONTINUOUS "GROUND HOG DAY" I RARELY REMEBMER THE DAY, DATE, TIME (IS IT AM OR PM?). THAT HAPPENED THIS YEAR?
WHAT HAPPENED TO MAY AND JUNE?
MAYBE THEY'RE RIGHT. I DON'T KNOW HOW LONG MY WIFE CAN PUT UP WITH THIS, BUT I'VE BEEN KEEPING AN EYE OUT FOR A SHOPPING CART AND A BRIDGE I CAN SLEEP UNDER.
MAYBE THEY'RE NOT. I SAW THE NEUROLOGIST THAT SCHEDULED MY SLEEP STUDY TODAY AND AM SEEING A NEW ONE TOMORROW THAT'S CLOSER TO HOME. I CALL TO CONFIRM MY APPT AND THEY WANT TO KNOW WHY A NEUROLOGIST WOULD EVER DEAL WITH SLEEP DISORDERS -- THAT'S A PULMINARY I.M. DR. I SHOULD SEE. THEN WHY DID MY CRAZY SHRINK, THAT I SEE JUST TO GET XANAX FOR MY VERTIGO I GOT FROM A FLU BUG CHRISTMAS '92, SENT ME TO THE NUEROLOGIST IN THE FIRST PLACE.
THE SHRINK - FINALLY DECIDES I'M NOT SLEEPING SO MUCH BECAUSE I'M DEPRESSED, BUT THERE'S SOMETHING PHYSICAL GOING ON.
THE FAMILY DR - SAYS I'M SLEEPING SO MUCH BECAUSE I'MDEPRESSED AND HE KNOWS DEPRESSION. HE'S HAD IT FOR THE LAST 150 YEARS (I THINK HE'S 190 Y/O)
THE NEUROLOGIST - YOU'VE GOT SLEEP APNEA. OH WELL NONE OF THE TREATMENTS ARE WORKING? TRY TO GET ON A NORMAL SCHEDULE BY GOING TO SLEEP AND WAKING UP AT THE SAME TIME EVERY DAY (IF I COULD DO THAT, I WOULDN'T BE SEEING YA). OH, AND GET A LOT OF EXCERCISE (A GOOD DAY FOR ME IS WHEN I HAVE ENOUGH ENERGY TO OPEN THE BLINDS SO I CAN AT LEAST SEE THE WORLD, IF NOT PARTICIPATE IN IT)
THE PATIENT -YOU'RE ALL NUTTIER THAN I. I THINK I'LL JUST GO BACK TO SEEKING "THE GREAT PHYSICIAN" THAT HEALS ALL, IF I COULD JUST FIND THE ENERGY TO DO SO.
ANYWAY, IF YOU GOT THIS FAR IN MY CHAT, THIS IS WHAT YOU GET FOR READING A NEWBIE. DESPERATE AND SEEKING HELP AND HOPE.
ALL REPLIES WELCOME!
Posted 23 October 2007 - 03:24 PM
I do know how you feel!!! I live the same thing everyday, DON'T GIVE UP!!!
When I was finally diagnosed, I had to get a whole new set of Dr.s , I was told I was exaturating my symptoms, I was depressed, I need to get more exercise, they even had me going to strenuous physical therapy. That was rising my blood pressure to stroke level. My husband finally picked up my meds and said it is time to get a new primary care physician.That finally got me to the right nuerologist, that took one symptom at a time and got me to the sleep disorder lab, thats when I was finally diagnosed with a severe case of narcolepsy with extreme EDS, chronic fatigue., and post concussive syndrom.e. I still cannot work , have a terrrible time getting through some days.or have the energy or the ability to cook a meal.It took alot of different drs. before I got to the right one., I do take alot of meds, and I still am so fatigue all the time. I have tried to start walking short distances, now I am on
Xyrem, and 70 mg. of ritalin a day, they just increased my xyrem one month ago, and I think it is helping. I get a little bit done in a day. I still cannot work, because of I cannot multi-task, have trouble concentrating, cannot follow instructions, because I I cannot remember what I was told.Besides haveing Maigraines. and it takes me so long to even try and do dishes, because I get so sidetracked so easily. So Like I said I know what you are going through, it took me two and a half years before I found a dr that took me serious. I seen so maany nueropshyches, that said I was making everything up. How I finally got to my drs that ddiagnosed me , because my husbsand and I end up splitting up for a month and start going to couseling, and he then became my psychologist and works with me and got me to St. Johns Hospital which has a sleep lab a nd some great Drs. The one thing that kept me going, wqas I knew I was a different person and I knew things were wrong, so I seen so many drs, with the same symptoms, over and over but it finally apaid off. I hope this makes some sense. Would love to hear more about your case, I would love to start an advocacy for narcolepsy.
Posted 03 November 2007 - 09:00 AM
[color=darkred]Hello all my sleepy friends, thank you so much for all of your input. Just a quick FYI I tried the Ritalin and thought I was having a heart attack everytime I would take it I would get such severe chest pain that once I had to pull over on the highway and call 911 to come get me. Of course after spending the day in the ER they could not find anything wrong. I am now on dextroamphetamine is anyone on that? It seems to help with my sleepyness but my multi tasking seems to be getting worse I didn't know it could get worse. My memory is probably the most frustrating trying to have a conversation with someone is so crazy 9 out of 10 times I can't remember what I was going to say or what the other person just said. People will look at me like HELLO are you listening or like they what to finish for me what I was trying to say because at least they can remember what the topic was we were talking about. Can anyone tell me if this might be cataplexy? I have not fallen but my legs are so weak, if I try and carry any weight and then try to say go up a step or curb it takes every ounce of energy I have to get up that step or curb. It feels like I can't step down because my legs will give out.
Sorry to ramble on but like someone else said you guys are the only ones that seem to be able to understand and relate. Thank You! :wink:
Posted 19 November 2007 - 08:20 PM
Posted 25 November 2007 - 01:58 PM
When diagnosed this summer with IH my doctor said right away that I would not be a candidate for Ritalin. In the past, I've had irregular heart rhythm that is now successfully treated by meds. Yeah! He had actually read my chart - I knew then I liked this guy, and I still do. Ritalin is known to have the symptoms you described.
So, I was already on Provigil then he added 40mg Dextro. at 9:00am, 1:00 and 4:00pm. After about a month of that I hadn't noticed any positive changes and was feeling really anxious soon after taking my doses (as evidenced by my sister pointing out that I was talking without ceasing ) He took me off the Dextro and started me on Concerta. I now take 72mg one time a day. It has helped a little, as much as the Dextr. did, and I do have the anxiety I felt with the Dextro. Two weeks ago I started Xyrem. I don't like it due to the fogginess in the morning and the nausea 24/7 but hearing so much good about it, I will try it as long as he thinks I should. I don't think it effected my memory or confusion - those have both been hateful for a while! I play memory computer games and handhelds alot. Do they help? I can't remember.
I've also had my Zoloft increased to 300mg/day and Wellbutrin to 300mg/day. I have taken the Zoloft at 200mg since 2000 when my son fractured his neck (yes, same son that is now a fire fighter! :shock: ). Wellbutrin is new since my diagnosis.
You sound like you have a good head on your shoulders. Make sure to tell your doctor EVERYTHING you feel when starting or upping a new med. Remember that some meds work better in combination than they do alone. And, a second, third, etc., opinion is always yours if you choose.
Posted 05 December 2007 - 02:56 AM
I just got diagnosed this afternoon with narcolepsy with the result of my sleep study. I felt like my body was a prison for years. I don't even remember what it feels like to wake up refreshed anymore. they put me on provigil but I'm skeptical since it makes me even more tired and my heart feels as if it will explode.
I'm not sure if I really am depressed, or if it is just because of this illness.
either way, I feel like Hell. I just want to know of one success story. just a little inspiration.
Posted 07 December 2007 - 04:09 PM