16 replies to this topic

[chrissy]

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.

[chrissy]

I am still trying to get used to the meds I am on Ritalin and I seem to be having some chest pains with this I am waiting for the Dr. to see what the next step will be regarding the meds. Sorry to hear that you have been recently diagnosed. I think the hardest thing for myself and my family to grasp onto is the fact that some days are pretty good and then others really stink it's so up and down.

[2tiredalways]

I was diagosed abt 4 yrs ago and still trying to get a grasp of the whole thing.

[Katlynran]

If you are new, welcome, please ask questions! If you don't understand a term or phrase, please ask. We all were in your shoes once, scared and feeling alone, thankfully you are here. Here you can find answers, understanding, and maybe a little peace!
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".

[Beth]

I have just been told less than a week ago that I have Narcolepsy. I am almost happy at this point because at least I know I am not the worlds laziest person who is loosing there mind!
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!

[Marinaki]

what i have found that works since i was about 16 and had no clue is when you wake up in that state telling your self that it is just a dream and that you need to go back to sleep to get out of it... otherwise your body goes into panic mode and that is when you experience night terrors and such.

[luckychi_3]

It took 2 and a half years for me to get to the right dr. I thought I was going crazy, regular m.d.'s was saying I was just depressed , exaturating , all of my symptoms, since I was hit in the head at work. I was faking it for secondary gain, I have been accused of all different things, when I finally got to a neurologist that took all my symptoms seriously , he then got me to correct areas to get diagnosed. I had to go through alot of different medications , I am now on 70 mg. of ritalin a day and also take xyrem, and they just upped my dosage on it. Because I have EDS I take the highest dosage of ritalin. But still I have no energy I am so fatigue all day long. I would like just one day where I had some true energy like I used to. I used to work in the restaurant business, and also was a mager in a fast paced retail store. Now I am not even able to work, drive, or stay by myself.

[Jill]

Chrissy, sorry to hear of your struggle during this beginning phase. I was only diagnosed myself in July and honestly can't tell you when it started. My actual diagnosis is idiopathic hypersomnia. Until the 1960's-70's is was grouped with narcolepsy but has been separated as a rare disorder of its own since then. :?

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!

[linzieluv]

I have questions I didn't even realize until this site. I was labeled with idiopathic hypersomnia by a sleep specialist in June, but he said he couldn't rule out N. I noticed fatigue interfering with my life since i was 16, but in the last two years things have been getting worse. Is this something that is going to continually get worse through out my life? Any tips on taking provigil in the morning? I tried to make it simple, its by the bed with water. Two days ago I had a horrible day, so tired at work and made so many mistakes, that night i found the pill in my bed. I took one pill out of the bottle and thought I took it. I was even worried that the med stopped working. Speaking of that, after extended use of provigil, will I need more amounts to stay awake? I have been fighting a cold for the last week, and I cough during the night so I have been even more tired, on my day off from work I just want to sleep all day. Should I take it that day to reinforce the healthy sleep cycle, or not take it and let myself sleep for my immune system. too many questions at once?

[JDSEARING]

:shock:
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.
:shock:
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?
:shock:
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?
:shock:
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.
:shock:
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.
:shock:
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!



[/b]

[luckychi_3]

Hey Joe:

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.

[chrissy]

[/color]

[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:

[MaryAnne]

JDSEARING.......I went through so many tests and mis-diagnosis also...I think we all have.....when you go for the sleep study make sure they schedule you for a split study......over night and the all day nap study! (even if they claim you do not need both) And I believe having the sleep study was the turning point for most of us in correct diagnosis! So good luck to you.....

[Jill]

Hi Chrissy,

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.

[Jin-Ah]

hi, my name is Jin-Ah.

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.

[jlconrad]

You probably won't see immediate results but provigil shouldn't make you more tired and it shouldn't increase your heart rate. I was diagnosed at 17 and I am 22 years old now. It took a year or two to be properly medicated, but now I am on 300 mg of provigil and I don't know what I would do without it. Most days I almost feel like a normal person as I am awake and don't take naps anymore. I have to make a conscious effort to make it work but if I get 8 hours of sleep a night, take provigil early in the morning and eat healthy I feel pretty good. My suggestion is to ask your doctor as many questions as possible, read as much as you can, and don't give up on it. I know that some people have it worse than others and maybe I am just fortunate that mine isn't as severe, but before I was medicated I slept all the time, I took coma-like naps and had sleep paralysis and/or hypnagogic sleep hallucinations that scared the S#$% out of me. It takes time to adjust but hopefully provigil will start working for you and you can get your life back.