14 replies to this topic

[nycNURSE]

Dear Mary:

It sounds very much like you are describing an ex- of mine (and that is in fact one of the reasons I made him an EX...) What do you know about the results of your sleep study? The way that I have often succeeded in making others understand my situation better is by explaining to them what was uncovered in my own sleep study. I explain to them about the different stages of sleep that normal people progress through every night in an orderly fashion--including the deep, restful/restorative stages--and this just is not the case for those of us with narcolepsy. I tell them that the effect on your body and mind amounts to something very akin to chronic, severe sleep deprivation. Ask your fiancee to try to imagine what it might be like to have only been able to have 3 or 4 hours of sleep per night for the last 25 years----that is what it is like to be narcoleptic!!
(On a side note, I highly recommend Xyrem, which works by improving your sleep efficiency. It is the best thing that has ever happened to me, and the ONLY thing that enables me to be a successful, productive human being. Xyrem has given me a life that would never have otherwise been attainable!)

Good luck with everything

[cattar]

I had posted regarding my son who is 22 and has recently been diagnosed with narcolepsy on this same forum. We too had a similiar situation. My son is now happily married and I will say that my dtr in law has learned a great deal about his situation and how to handle him. He has extensive cataplexy and sleep paralysis with some very odd automatic behaviour. They were engaged when he was diagnosed and the wedding was within 4 months of the initial episodes. Our entire family had to be educated and in the beginning it was difficult to convince everyone that these episodes were not him acting out. I am also in the medical field and deal with sleep; but had never seen anything like this before. I work a lot with sleep apnea pt. and one thing I tell them when I set up their cpap equipment is that think of yourself have multiple periods when you stop breathing and imagine that during this time your body goes into fight and flight mode. Basically the same as an adrenaline rush as if your animal or child needed to be rescued. This is what happens to your body over and over at night and you are not resting. Putting them at risk for heart problems etc. With narcolepsy there is a part of the brain in the hypothalmus that doesn't allow you to have control over your sleep wake cycles. Show him this site and allow him to read about it. While it was very difficult for my dtr in law I remember discussing with her if she could handle this in a marriage. Of course, her answer was yes I love him. I have seen the two of them grow together in this; however ; with narcolepsy sometimes the narcoleptic can act out unfavorably and the other party doesn't understand thinking that they are intentionally trying to hurt them. You need to counsel with a group or someone to help your fiance to understand your situation better. It does effect everything so education is the best resource.

[ATampaNarco]

:cry: This is really hard. I was there for 5 years and all and all the relationship was just suffering! And he just thought I was not into him! It was totally out of my control and then when he would wake me up, I had no idea what was going on and I could not even remember anything. Talk about frustrationg. Go to the Doctor and insist on a Sleep study as well as a MSLT. I am on Xyrem and just about stimulant free! I feel better, I am losing weight, My relationship is healing, It was an emotional hit to my fianee he was just rejected for so many years and he thought I was no longer attracted to him, to say the least I am in truly in Love with him! In you live in FLorida I have a great doctor in Tampa.

[apalmer24]

My fiance used to get angry and pout when I needed a nap on weekends or came home after work and dozed off when he was telling me about his day. He is a very active, athletic guy who could not comprehend why I couldn't "just do it". He made a habit of giving me lots of advice about what my real problem was...I didn't eat right, I ate too much sugar, drank too much Diet Coke, didn't get enough exercise, I wasn't motivated... I finally did what nycnurse did. I sat him down, showed him what a typical person's sleep cycle looked like, showed him what my sleep cycle looked like, and explained to him that every single day of my life I felt like I was going on 2 hours of sleep. He is a very logical thinker, and when he could actually see on paper, in a chart, what the problem was and how my brain was affected, he started to be more understanding. I also let him know what was at stake, that I couldn' t continue to spend my life with someone who couldn't understand (or at least try to understand) what I was going through. It took a few weeks, but he eventually came around and started to remind me to take my medication, and offer to get out of the house on Saturdays so I could get some extra rest. He even started making dinner before I got home so I could take a quick nap after work. He still doesn't really understand it, but he knows how important his support is to me.

Here's where I am going with this: Don't give up on him right away. It sounds like you've tried to get through to him on an emotional level, and it didn't get you the desired results. Try getting through to him on an intellectual level. It may be that he doesn't understand what is going on in your body. Sit down and show him the literature. Give him the opportunity to ask you questions, go to a physician appointment with you, and struggle with understanding it. Just like you and I needed time to grieve a "normal existence", so might he. Ask him why he is so unsupportive. Give him an opportunity to change. If he doesn't, it may be time for you to think about whether or not it is worth the effort to make the relationship work. We all deserve a partner who is going to support us through difficult situations. If he is unwilling or unable to do that for you, move on. Easier said than done, I know, but why waste your time with someone who refuses to treat you with dignity and respect? Life is far too short to waste your time with someone who only drains what little energy you have left. If you still aren't convinced, dump him, read the book, "He's Just Not That Into You" and invite your girlfriends over for movie night and junk food.

[nycNURSE]

AMEN, apalmer24! Thank you for your wise and eloquent two cents.
Your depiction of being blamed for not taking care of yourself properly was so familiar to me I almost jumped out of my seat when reading it, and I bet that I wasn't the only one. I look forward to us all getting to know one another [/quote]

[Idreamawake]

Hi there! i am new to this site, but so happy that there is a support somewhere. I live in Washington State and there are no support people or groups anywhere around in this state let alone where I live near Tacoma. Anyway, I wanted to ask about Xyrem. Is it a sleep aid? What specifically does it help you do - I will google it when I get off of here. But I've seen it mentioned in here a few times and was wondering if it is a new medication. I haven't been to see a neurologist for over three years because I had tried all the medications that she could put me on and they were just not tolerated by my body. Especially the stimulants! Anyway, any advice would be great. I have been diagnosed with mild narcolepsy but some days it sure doesn't seem mild, LOL!

[apalmer24]

Thanks nycnurse! It certainly is a relief to read what other people have to say about their experiences with narcolepsy. For the newbie (Idreamawake), check out www.xyrem.com for info on that drug. I too have had difficulty with the meds. The first thing I tried was Provigil. I wasn't blown away by the improvement, but there was improvement. Thankfully, I have the most wonderful nurse practitioner and physician who encouraged me to try something else to see if I found better results. I have been on Adderal for a few months now, and I have to tell you, I am not crazy about it. It has a much more dramatic "wakefulness" effect, but there is also a dramatic "crash" when the drug starts to wear off. My MD mentioned that some of his patients have had amazing results with Xyrem. One patient was even able to stop taking the Provigil during the day, she only needs the Xyrem at night, and on a scale of 1 to 10 her energy level has jumped to a nine! I am seriously thinking about making the change.
Think about seeing a physician who specializes in sleep if you can (www.sleepmed.md). I am sure you can find one near you in Tacoma or Seattle. I didn't get anywhere with anyone else. I saw a family doctors, internist, ob-gyn, ent, neurologist, psychiatrist, psychologist...you name it, I probably saw them. I even had my tonsils out on the advice that it might help. (FYI, I would NOT recommend that. It didn't help and it was horribly painful.) I used to live in Portland, OR and I know the rainy/overcast weather can have a huge impact on how I am feeling. I used to go tanning (only about 10 minutes) a few times a week and that helped a lot. For some people, the UV light stimulates the wakefulness centers of the brain. Good luck. By the way, I am so jealous...I miss the Pacific NW more than you can imagine!

[catorr]

Mary: Narcolepsy Network publishes a little booklet entitled "Narcolepsy: Questions and Answers." Get it for him.

[bosoxchic2004]

:cry: I can totally relate to what has been posted. I was diagnosed with narcolepsy in '96, but I knew something was wrong long before that. I would fall asleep in class and get notes sent home. I still have a report card that states I fell asleep in class before getting my work done. Teachers, friends, neighbors and my parents sometimes just thought I was lazy. It is very difficult to explain to others what it is like living with narcolepsy. I wish there was more public awareness. It has also been difficult raising my daughter on my own. It was hard to always have to explain I couldn't do things because I was tired. I have tried several different medications, but nothing really seems to help much. Mostly it minimizes the sleep attacks. I still have the tiredness, sleep paralysis, and cataplexy. Even with medication, I still feel tired all the time. I could sleep anywhere anytime.... I am really glad to find a website to talk with others about living with narcolepsy. I wish there was a support group in my area. Thanks for listening....

[bagpuss]

:? HI.THIS IS MY 1ST TIME. AFTER READING SOME OF YOUR STORIES I FEEL FOR THE FIRST TIME IN A LONG TIME THAT IM NOT GOING MAD AND THAT IM NOT ALONE. THE LAST YEAR SINCE BEING TOLD THAT I HAVE NARCOLESPSY HAS BEEN THE WORST YEAR OF MY LIFE. AT THE MOMENT IM ON DEXAMFETAMINE WHICH AT FIRST WAS GREAT.BUT AS MOST OF YOU ALREADY KNOW IT DOESNT LAST.THIS WEEK MY G.P HAS JUST UP MY DOSE(i will keep you posted).THE LAST FEW MONTHS HAVE BEEN HARD .I LOST MY JOB DUE TO NARCOLEPSY,THAT WAS A BIG DOWNER FOR ME AS I HAVE ALWAYS WORKED AND I HAVE TO SURPORT MY 14 YEAR SON.THE UK SEEMS TO BE BEHIND THE TIMES.IM JUST GLAD THAT IVE FOUND THIS SITE ,I CANT EXPLAIN WHAT A TONIC IT HAS BEEN. THAKYOU [/b]

[bagpuss]

Thanks nycnurse! It certainly is a relief to read what other people have to say about their experiences with narcolepsy. For the newbie (Idreamawake), check out www.xyrem.com for info on that drug. I too have had difficulty with the meds. The first thing I tried was Provigil. I wasn't blown away by the improvement, but there was improvement. Thankfully, I have the most wonderful nurse practitioner and physician who encouraged me to try something else to see if I found better results. I have been on Adderal for a few months now, and I have to tell you, I am not crazy about it. It has a much more dramatic "wakefulness" effect, but there is also a dramatic "crash" when the drug starts to wear off. My MD mentioned that some of his patients have had amazing results with Xyrem. One patient was even able to stop taking the Provigil during the day, she only needs the Xyrem at night, and on a scale of 1 to 10 her energy level has jumped to a nine! I am seriously thinking about making the change.
Think about seeing a physician who specializes in sleep if you can (www.sleepmed.md). I am sure you can find one near you in Tacoma or Seattle. I didn't get anywhere with anyone else. I saw a family doctors, internist, ob-gyn, ent, neurologist, psychiatrist, psychologist...you name it, I probably saw them. I even had my tonsils out on the advice that it might help. (FYI, I would NOT recommend that. It didn't help and it was horribly painful.) I used to live in Portland, OR and I know the rainy/overcast weather can have a huge impact on how I am feeling. I used to go tanning (only about 10 minutes) a few times a week and that helped a lot. For some people, the UV light stimulates the wakefulness centers of the brain. Good luck. By the way, I am so jealous...I miss the Pacific NW more than you can imagine! wow the tanning makes sense. I use to go twice a week, but havnt been for the last year or so which is when ive been at my worsed.thankyou im going to give it a go . 8)

[kjmod]

I am new to this website but not to Narcolepsy. I was diagnosed 8 yrs ago and have been married for 9 yrs and my husband thinks its all in my head that I need to see someone about our relationship. The threat of divorce is always his card to play. I tell him if he could only spend one day in my shoes he might begin to understand how my life has been. Everyday is a struggle to get motivated. I tell my friends just to take my pills is a struggle i'm that tired. I take adderall 3 types 2types are time released(xr). Have you ever taken this or tried others? Do tell.

kjmod

[bagpuss]

THE THING IS I DONT THINK ANYONE WILL EVERY UNDERSTAND IT UNLESS THEY HAVE TO LIVE WITH IT THEMSELFS. WOULD YOU ?????? MY 14YR OLD SON SEEMS TO UNDERSTAND IT BETTER THAN MOST SO THERE IS HOPE FOR THE FUTURE.MY SON SAYS THE BEST WAY TO LOOK AT IT IS , IF YOU WERE HEAD TO TOE IN BANDAGES PEOPLE WOULD HELP YOU AND DO EVERYTHING FOR YOU . SO WHEN IM HAVING A BAD DAY THATS WHAT HE THINKS,JUST BECAUSE HE CAN,T SEE MY ILLNESS DOESNT MEAN ITS NOT THERE.

[sleepyAndie]

Aww your son is so sweet! I work with special needs children and they know when I'm not feeling well and they're constantly asking if I'm ok. They can be so sweet at times. I agree with you guys on this site that no one understands this condition unless they have it. I was diagnosed in 2005 and I have spent the last 2 years trying to explain to my family and friends that I'm not lazy. First of all it's very frustrating to be told your lazy every day and you have no control over it. I tried to get them to read pamphlets on it or look at web sites but somehow they always become too busy. My grandpa always makes the comment of "well I fall asleep all the time, so I must have narcolepsy too then." Then everybody laughs like it's a joke. Now I'm a happy go lucky person, so I just laugh along with them, but they have no clue how I feel. I fall asleep at all the wrong times, but can't sleep at the right times. Does anyone else have that problem where you fall asleep during the daytime at inappropriate points, but can't sleep at night? I was just wondering?

I guess my most frustrating thing is that I'm still in college and if a student has a disability like ADHD, ADD or a physical disability that you can see they will make the accommodations, but when I went to talk with my instructors they look at me first of all like what are you talking about and then tell me to go talk to somebody else. Now maybe it's just because I have this condition and I'm going for my degree in special needs teaching that I see how these teachers treat students that are the slightest bit different and it makes me wonder what children are going to act like in the next 20 years? I see how they act now.