Medical Stories - Narcolepsy: Carol's Story

[@carolhilton1371]

Hi there! This is my story! I just wanted to do a follow-up and tell ya'll that I am doing pretty darn good! I am about 5 years into my diagnosis of Type 1 Narcolepsy now at the age of 55 and have gotten a hold on living with it. I found I was very sensitive to most of the medications that they prescribe for N1, and quite frankly made me worse. Diet, lifestyle, some medication, and a big change of perception have been the most helpful and life-changing for me. I remember being so happy to finally get the diagnosis thinking that the medication would make it all better, but quickly realized that it was only a tool. It took a couple of years of trial and error to find the right ones for my symptoms and tolerance. But even with that, I still had to re-evaluate what I needed to feel better and be a person with a sometimes debilitating, invisible disorder that hardly anyone including my primary doctor understands. It is as mental as it is physical and affects every aspect of the body's ability to function normally. It forced me to re-evaluate what is important and necessary to participate and live a fulfilled and happy life. For me. that meant cutting out all the people-pleasing and saying yes to everything thinking I had to do it all like everyone else and only doing what I could. I learned that unless my cup was full, I said no to things that I didn't absolutely have to do unapologetically!!! As everyone should. I learned that I was responsible for my own health and happiness, and it was my job to make it my priority so I could show up for things like family and friends, work, and fun. I still have good days and bad days, but who doesn't? I am back to doing everything I want and need to do, just on a smaller scale. I used to say I had more time than money, now I say I have more time than energy. I look at everything now in terms of energy and whether it will give me more or take it from me. The trick is finding the balance, just like everyone else. I agreed to do this video because I wanted to raise awareness about Narcolepsy and possibly help others who were not yet diagnosed or struggling and feeling alone in their journey. I didn't realize until now how much it has helped me come to terms with my own. Thank you Medical Stories, Dr. B,, Randy at 2G's Clothing, Ginger from Begin Within Yoga, and all my friends and family for showing me lots of love and support but most of all compassion and grace.

[@TaylorDornMusic]

It is so validating to hear that I am not the only one that feels guilty about how uninvolved I can be with my kids because of how tired I am.

[@amiekim]

I just finished my 24-hour sleep study... waiting for my ride home, actually. You have me reevaluating my childhood now.

[@stellaancimer8505]

Hey. What study shows? I Have cataplexy and huge sleep atacks, but sleep study was normal, we are waiting for hypocretin test

[@emmyashbaugh]

Tears rolling as I watch this. I am undiagnosed and just always thought I was excessively tired constantly as long as I can remember, until cataplexy episodes started in my early 20’s. I still had no idea what was going on until I saw a comedian with a bit where he said he tried out new jokes on his mom because if it was really funny she would flop over like a dead fish with cataplexy. My partner & I looked at each other stunned, I finally had a name for my issue. I’m afraid to get diagnosed because of it being a “disability”. I’m also a mother of three and it breaks my heart that I can’t do a lot of things with them that their dad can. I can’t sit and watch tv or a movie or I will just be OUT cold, I decline a lot of invites to things because I’m exhausted just thinking about it and I am horrified to have cataplexy attacks in public.

[@jenniferlamblin8570]

Emily, your story sound exactly like mine but I am a single mother of 4 children. The tears roll down my eyes thinking of what I was not able to do with them. I have had a few car accidents from this and the last one actually caused a felony charge on my record do the the injury of one of my own children on highway going 75mph, on way to a church. I flew out the front window myself no seat belt and live to share and spread do not keep it a secret. You can improve the quality of your life through behavioral and cognitive approaches as well as medications after you have the baby. It is a disability and I waited unti the age of 41, injured child, and felony on my record for life to become diagnoised

[@jethrotull5847]

It is a long, painful, frustrating journey ..at least in my situation to get diagnosed with narcolepsy. One has to do a sleep study that has absolute criteria and catch you on the right night because those criteria are NOT evident every night. Usually multiple sleeps studies are needed. Start you journey as soon as possible. Some advice… Many of the advanced medications will may not be available if you get depressed. This is not a simple matter of trust between a doctor but a matter of your insurance company and evil Pharmacy Benefits Managers (PBM) denying you medication. In my situation, although I am highly insured ( Been on BCBS for 10 years )my wifes job switched its PBM. It has given me nothing but misery for a medication I took for 2 years ! The PBM will dig through your medical records, raise countless bull crap issues, kick the decision to yet another in house review board. Furthermore they even proposed to cut my dosage ! If you have narcolepsy Xyrem is not supposed to help with cataplexy only with the daytime sleepiness. Please stop worrying about “disability” and get on with treatment. I told all my coworkers I had the “KZbin fainting sheep disease” .. while fighting off the self induced cataplexy.. but they understood. You will be ok, and feel alive again. Just bear the storm..

[@jethrotull5847]

@@jenniferlamblin8570 Good god Jennifer, the back side of your testimony.. the accident reminded me of driving 10 mph thru a park, entering cataplexy and the horror afterwords realizing I could have killed someone loosing control of my vehicle. Powerful, intensely honest testimony of events we suffer is a contribution to society. Even if we are treated and most symptoms are under control it is most important to be honest. To this day I may only drive for short trips and then only if my wife is with me. I’m so paranoid about somebody else hitting me and something in my medical records indicating I have narcolepsy that I have installed cameras in my wife car ( I personally don’t own a car anymore ) I’m finding as I get older however, I can fall asleep with very little warning so I guess my feet will be my only mode of travel in the future…nevertheless I am happy, Ok and thankful for all that God has given me ( bad or good ). Just a comment… some states require you report to the department of motor vehicles you’ve been diagnosed with narcolepsy. Virginia state relies on people NOT to drive if you feel you can’t. Thus my License is still valid until I hang up my set of my wife’s keys.

[@JaylaisAwesome]

I’m trying to have my friends understand that this is a real thing.

[@mannabythemountain1598]

❤ Thank you for sharing your story.

[@kaylaleopard6497]

I always thought everyone was like me...everyone's tired...i just can't handle life. The day after my first night of xyrem, i realized exactly how bad it was. I couldn't believe it. I could finally cut myself some slack...it was never because i was lazy or weak.

[@metaljenn82]

I've had symptoms since the age of 12 and wasn't diagnosed until 36. Being diagnosed has made an improvement in understanding what is going on with me. The cataplexy can be difficult, I get very dizzy, not vertigo dizzy, but a buzzing in my head. I'm still looking for other narcoleptic's with this symptom, I haven't heard of anyone with narcolepsy type 1 describe this. I would love to be able to find other's struggling with this "dizziness."

[@sevenalwaystrill7197]

I was diagnosed in 1994, but because I have gained weight so now because I'm black, NC swears it's only sleep apnea. I was always told I was lazy, even though I made every sports team I tried for in school. Up until 2014 I was less than 147 lbs. I'm older and slower, and more tired.

[@jethrotull5847]

Hey Steve, I was officially diagnosed 3 years ago but was having cataplexy for at least 8 years prior, I to have gained some weight too but in my case I am also a insulin dependent diabetic ( it sucks but could be worse ) I have a question for you. Is any aspect of your narcolepsy getting significantly worse. I’m not referencing being more tired all the time as this is a “trait” of narcolepsy well it also happens by getting “old”.

[@gemeinschaftsgeful]

People can start out with N. and if they gain weight can also add on sleep apnea. With N. I've noticed a lot of ignorance out there. First, they want to call you lazy. Then they want to say: oh it's sleep apnea simple because they don't know or understand Narcolepsy. People with N. have to fight but tired people don't make very good fighters.

[@jethrotull5847]

@@gemeinschaftsgeful Oddly enough, I’d say people with Narc often give all effort into staying awake but eventually fail. With me I desperately try and fail multiple times as I cycle thru micro naps many without even knowing. I dropped out of hight school, earned many computer certificates MCSE and had a good job as a network engineer. Narc was diagnosed @50 years old. I am not lazy. In my case I am my strongest critic, but self shame is a useless tool. Don’t waste your time with others opinions in this matter. Narcolepsy will alway win in the end. You can’t WILL yourself out of it.

[@DigiAloe]

I haven’t been diagnosed yet, but I wanna be Because I can relate with a lot of people that have narcolepsy Heavy day time sleepiness, very very vivid dreams, i can fall asleep very fast, I have to drink energy drinks to stay awake sometimes and do healthy diet to help but I still struggle with it It’s so annoying having to deal with it because people call me lazy and I feel ashamed

[@s.k.1603]

Caffeine consumption does not help Narcolepsy. If you read enough medical websites they all more or less advise you limit or avoid it.

[@jethrotull5847]

Hey, it’s a long journey..in the US they rule out other more likely issues, sleep apnea, depression.. etc. Often Narcolepsy can coexist with sleep apnea. They insist on treating the apnea first. ( treatment for it takes a lot of time ) I have cataplexy that strongly points to narcolepsy but Still had to do the full “DANCE”. The diagnosis “dance” took 2 years. As for “lazy” well don’t sweat it. Your first duty is to yourself. Purposely slow down because if something is wrong you can easily accidentally impact someone else’s life. Narcolepsy, at least in my case caused me to wreck my car ( single car accident ) at least 5 times. I fall “asleep” in seconds. Don’t let peer pressure push you in to a situation that will haunt you forever. My “I’m done moment” came when driving 5 miles an hour in a state park, having a cataplexy attack, and afterwords realizing that I could have killed someone.

[@jethrotull5847]

I’m not trying to get anyone down but narcolepsy is a SERIOUS disease. Before you get diagnosed you will find out vividly who your real friends are as others tend to ridicule and doubt your condition. The process of diagnosis for myself was almost as bad as the disease as I lost my job and people I thought to be friends, all this created a situational depression that worsened my cataplexy trigger point. The drugs I take now help that but during the 2 year “wait” I would routinely melt to the ground ( now occasionally and somewhat controlled ) . It was so embarrassing as my emotions and depression were always extreme at the hospital and with my lawyer, as I was desperate .. Cataplexy would melt me to the floor. The important thing is don’t give up. Before diagnosis I was having endless cataplexy events that I figured were just because blood pressure or sugar levels I started watching KZbin videos. Then I went to my sleep doctor and said “I have narcolepsy”. I feel that my self diagnosis made him very suspicious. The first sleep study indicated sleep apnea. The second I failed to sleep the mandatory 6? Hours. The Third study I slept all night ( the hospital was like home then ) and was able to proceed to the daytime test. I fell asleep within seconds on four of five tests and was excused from the fifth. I also took hundreds of micro naps during the out of bed testing times. My doctor apologized to me then told me my narcolepsy was severe, told me everything had changed in getting a medical diagnosis. That many people diagnosed in the distant past had to be reevaluated with the new criteria and insurance companies were clearing their “books”. I feel his initial skepticism and great care in having me obtain every test available gave me hope when I appealed my initial decline for disability insurance . I can’t express how forsaken I felt. I told my layer I did not want to testify if “required” because I would have had the MOTHER of all cataplexy ! I couldn’t handle any more I was falling apart, I was SPENT. Bill collection agencies would call and put me in cataplexy, I was convinced I was having a nervous breakdown. Finally my wife logged on to VRS one day and saw that money was deposited into my account ! Then a letter can 2 weeks latter saying I won my appeal. Lastly I must say it was a much better experience with SSDI. I don’t get a lot of financial help but I am eternally great full to the US government. They gave me some of my money back that I paid in for 35 years ! If anyone is going true this he’ll get help because you will absolutely need it. The second you are medically ( not Clinically ) diagnosed get a lawyer. Your life has changed. Everything one holds for granted is not simple anymore, but you’ll be OK.

[@gemeinschaftsgeful]

@@s.k.1603 As a Narcoleptic, coffee will stimulate me somewhat. If used, it should be limited to before noon so it doesn't affect night time sleep. Fasting makes me more awake but is limited because one can't always fast. Exercise is incompatible with sleepiness so having a job were being constantly physically active helps. Taking daytime naps for me is very necessary.

[@lelenicole5525]

I was diagnosed with KLS the sleeping beauty disorder but I feel like I can relate to this more.

[@nana.8509]

I have narcelopsy and cataplexy together. Kinda lucky i get this when im already 28yo. Not sure how if i get it during school. Must be hard to study. Now, i pretended i have no problem. But sometimes hard to hide because my jaw and eyelid will dropped when i laughed. My hand and head will be hard to control. So whenever i laughed when im outside wif friends, i will just turn away when laughing

[@Dewbone2]

Took me 34 years for diagnosis, and still waiting for Xyrem 😠

[@jethrotull5847]

All experiences are personal… my use of Xyrem and then XyWave are far from optimal. The first annoyance is it is near impossible to get any pain killers as they generally are Central nervous depressants as is Xyrem. Taking the two together can be deadly. Xyrem takes an hour to work with me and during that hour I go into hard micro napping. Rapid short sleep and wake cycles, then finally sleep for 3 hours then wake to take second dose. I hope you got on the drug and I hope it helps you.

[@Rene-uz3eb]

Sleepiness marked by immediate rem sleep phase isn't specific to narcolepsy, at least if there's no cataplexy. If also happens due to sleep deprivation. So if you can't sleep at night, but then stay awake during the day with stimulants, that might perpetuate the sleep deprivation problem. I remember a sleep prof who talked about accumulated sleep debt (deprovation), you can't just get rid of it by two night's of long sleep. So maybe the fundamental problem for many cases is not being to sleep well at night, and not allowing one self to nap during the day to make up for the lack of sleep.

[@LebronInCleats]

Narcoleptics often suffer from insomnia as well. And the onset of fast REM sleep for N diagnosis is diagnosed with the MSLT during the day. Also, what is considered Cataplexy varies greatly among specialists at this point and the ones on the cutting edge are now realizing Cataplexy can be very mild, including something as subtle as a droopy face, heavy breathing, difficulty speaking, and slight muscle weakness.

[@Doxxy820]

Hi Guy's ❤ thank you. I'm sure I have it. Having sleep test soon. Km on armudifanil allready it's helping bit. Still have cataplexy too. Sleep through day a lot still. Question Do you ever have spots before your eyes. Dr said they migraine Aura. I font have head pain with the visaul Aura. Is visaul Aura a thing with narcolepsy

[@lenieceanderson7439]

oñ❤

[@MuhammadNasir-qi9to]

What is treatment of narcolepsy

[@jethrotull5847]

Narcolepsy for me is a mystery. As mysterious and disturbing as my endless vivid dreams. On some days I probably do 100s of micro naps, snapping awake then quickly surrendering to sleep. I am aware of this cycling but can’t prevent it. During my 5 naps / testing I was asleep within seconds. On good days I only have to take a couple of naps but always have to deal with and manage possible cataplexy. While I’m happy society is moving beyond quick, unthinking judgement of people I hope political correctness doesn’t rob me of the ability to make light of my own disease. When I told my coworkers I had narcolepsy I said it was the fainting goat disease ( KZbin video ). The dry humor sagged my arms in cataplexy, but oh well … they know now. You let them know as you start having personal guilt missing Lunch breaks to sleep in some “hidden” parking lot. You car is a wreck because of micro sleeps during driving. I had a cataplexy attack while driving thru a public park looking for a nap spot, I hung up my keys and haven’t driven in 2+ years. While this journey sounds depressing, I’m not. I have a good family and a good life. I retired ( young ) from my job and decided to try to master thing I suck at. Everyone that is symptomatic needs to get checked. You don’t want to carry the burden of responsibility if you unintentionally hurt someone.

[@kimt.9684]

Are there any medications to help people with narcolepsy stay awake during the day so they can work and function normally? Or to stop the micro sleeps while they drive/bike/work?

[@jethrotull5847]

@@kimt.9684 Yes. There are several drugs that act as a “stimulant” during daytime. For me the best way to stay awake in day hours is to control my sleep at night. My night sleep is always interrupted and fragmented, waking every 2 hours or so then having some difficulty going back to sleep. Then the cycle repeats. On those days I endlessly micro nap during daytime. The most effective “remedy” for me is Xyrem. Although I have to wake up and take a second dose during night sleep it absolutely puts me in a Deep sleep. Before Xyrem I would wake up at 7am go to work and be destroyed by 9 or 10. I would drink countless monster energy drinks….. There is a place for daytime stimulation but it never felt “natural” to me. Of course everyone is unique! I wish you happiness and contentment:-)

[@jethrotull5847]

Note: Xyrem is VERY expensive and my insurance ( a very expensive plan with a very popular vendor ) is a joke of red tape, delay, and review boards. After months of back and forth they had the guts to only allow me a fraction of my Xyrem prescription ! Xyrem (Jazz Pharmacy) offers an alternate payment plan that make it affordable. In reality however, Xyrem’s active ingredient was once available almost free at vitamin shops ! The government banned is sale, for good reason as it earned a nickname of “the date rap3” drug and Jazz quickly started turning a huge profit repurposing it as a narcolepsy drug with a patented formula of secondary additives. So now Xywave is an updated formula developed so it can once again maintain a patented. It is what it is…

[@kaylaleopard6497]

I have taken xyrem for years...if you can take it, it's the closest thing to a cure. It absolutely has saved my life. From what I understand, it's not the drug that jazz so much has patented but the pharmacy. I have to say I have had very few problems with the pharmacy. But sure my insurance pays dearly for it. It is very expensive but without it I basically couldn't do anything.

[@jethrotull5847]

@@kaylaleopard6497 I’m glad people are still reading my original post and contributing to experiences. Unfortunately my positive experience with my health insurance has dramatically changed. The Blue C Blue S remained the same but my wife’s job changed the PBM. A Pharmacy Benefits Manager is a 3rd party company that sits between the insurance company and the patient. EmpiRx has created endless paperwork, runaround and BS. They even changed my dosage, something I worked for years to “balance”. Effectively BCBS maintains its good reputation but condones EmpiRx denial of my treatment. Disgusting! I finally had to “beg” Jazz Pharmacy to give me the drug outside of my perverted, thieving insurance. Americans need to not only find a good health insurance company but ensure that the PBM that is associated with the coverage is good. Everything previously sacred is devolving into a scam !

[@isarma1980]

They give Adderall for the treatment of narcolepsy so she doesn’t have to live like that! It’s been life changing for me!!!

[@jethrotull5847]

I take modafinil as it’s supposed to impact blood pressure less. The moral of the issue is they certainly do have things that help 👍

[@moonbabycrystals]

adderall has been saving my life up until recently with my narcolepsy, but now my ocd is worse than ever and my hair is falling out and i’m balding. just remember to be self aware and take care of yourself!!!

[@stellaancimer8505]

@@moonbabycrystals i also Have ocd..so i Have to take antypsihotic for this..but of course narcolepsy is worse..hope you are ok

[@CajunAdrienne]

Adderall does nothing for me...I can sleep on it. I see no difference when I take it.