Does it ever get better?

Hi guys!

I was only diagnosed in January and at first I thought brilliant I am not crazy or losingmy mind like everyone was telling me I was. I was delighted to have a name that linked all of the crazy things that had been happening to me for years.

At the time of diagnosis I was decorating our new home as the sale went through at the same time, moving, working full time and being forced to do a lot of overtime so I had no time to think. But I was struggling to keep up. For years I pushed myself to the limits working, studying etc even when I wanted to hide under the bed some days because I began to believe my family, GP, friends, workmates that it was all in my head. Yet no matter what I tried I couldn’t fix how terrible I felt, how tired I was etc. i had no time to myself all my time was spent trying to be normal and keep everyone else happy and not looking after myself and my feelings.

The feeling of relief having been diagnosed soon began to wear off though and the realisation of what had happened set in. It is scary that this is a life time thing. I had myself convinced I was depressed or had a thyroid problem that would be fixed and I would one day be “normal” - although I couldn’t remember what normal was like! But Narcolepsy and Cataplexy is a lifetime thing - the symptoms will never fully disappear… This has put a strain on my relationship with my husband. We are only married 18 months. He ignores my diagnosis, doesn’t want to talk about it, calls me crazy and tells me the drugs are making me crazy, won’t heed the consultants instructions that I am not to drive, ignores me when I talk to him, roars at me for tiny insignificant things, shouts at me to wake up if I nap, And is just mean to me all of the time. He was not prepared for this diagnosis at all and I am not 100% he wants to stay with me anymore because of it. This upsets me having wasted so much time and energy making sure he was happy, shirts ironed, dinners made, house cleaned, doing exactly what he wanted all the time etc etc when all I needed to do was sleep. But so be it, I realise now I have to start looking out for myself and helping myself. I am mentally and emotionally drained at this point and cannot take the stress of him deciding what to do. He is leaving one minute, then not the next… It makes me fall asleep even thinking about it.

I have felt guilty every day for years that I’m not normal and not giving him what a normal person could & I feel responsible for robbing someone of a normal life. Having said that if the shoe was on the other foot I wouldn’t love him any less & would do all I can to help him. But with him nothing seems to be good enough no matter what I do and he knew what I was like when he married me - we had been together for 7 years at that point. I’m not a “poor me” person I try to push my problems aside and carry on but it is to my detriment. I know I have to try to deal with this and manage my symptoms as best I can so I can achieve more.

I continued to work after diagnosis and was being forced sometimes to do 12 hour days despite revealing my diagnosis and fact I cannot do this. My workplace sent me to their company doctor who signed me off for 6 weeks, at which point I have to go back to him to review this. I found it tough to suddenly stop working but it was too difficult to get to work, I live 20km away in the country and the only way I could get there if I didn’t drive was to pay €63 return per day on a taxi. I barely earn that after tax each day. So I spent two weeks at home crying not knowing what to do after this. I know it was the right decision I couldn’t keep going with everything and continue to work at that rate- my job is highly stressful. I also hoped I could sort out my relationship with my husband being off.

My consultant started me on Provigil Modafinil. I am taking 400mg a day. At first I thought it did make me more alert but after week 3 this wore off. It gives me headaches, I’m nauseous, I have returned to being tired all of the time. I know some of this is down to stress at home and my husbands treatment of me, it’s really getting me down. My GP told me last week that these stimulants never really work and the results are minimal so that’s not helped me deal with this properly! I will be put on Prozac in the future according to my consultant to deal with cataplexy etc.hallucibations & vivid dreams etc are bothering me every day & night. I know it will take time but I’m not convinced I’ll ever get there.

So, after that very long rant (sorry I had to get it all out! It’s been 3&half months & I’ve had no one to talk to about it!), just wondering how long it took people to get the right treatment plan? How long to get back to driving? I am really isolated here on my own in the house. Does it get better? I need to stop convincing myself it will if it doesn’t. How has it affected people work wise?

You need to get rid of husband because he is making your N much worse. He doesn't deserve any special treatment from you. It is possible to live a fairly normal life in the long run. I was diagnosed finally at age 36 and I am now 74 so I do have a bit of experience. I still drive also. I have worked most of my life but at many part time jobs. I am fortunate to have a supportive husband but it wasn't always that way. I educated him by leaving him. Because I used to do what you did, Cater to him. Wev'e been married fo 56 yrs. with a couple of time outs for his bad behavior. Besides, I also have 4 children. I have always refused to let N run and ruin my life. Be very careful about getting too much medication also. I only take desoxyn, 5 mg. Time release and I usually take 2 to 3 a day. It pretty much takes care of the cataplexy and sleep attacks. I usually sleep anywhere from 2 to 4 hours at night and I am up for a couple of hours then back to bed. I use that time productively. It isn't easy to live with N but in time you will be able to work out what works best for you.

Donna, my sister has N and has a stressful high adrenaline job. It keeps her alert somehow. I worked part-time for many years. Some people ride motorcycles to stay more alert driving :). Ask your doctor, they have stories. I love your story because you must be strong, too! you work hard. I’m new and feel privelged to hear people share these and experiece dealing successfully with N. It brings insight.
If you just had the N to deal with, you’d be able to focus on treatment better, which isn’t interesting all the time so you’d stop to smell the roses.
People close to us who have depended on us don’t understand the disorder and our behavior often. I had a boss plus my sisters to treat me badly. I tried harder for them but treatment turned out to be more important. Too much stimulants can give side effects. I’m trying C-PAP now.

Hey, I went through something similar with my husband, but I found out why my husband was acting that way, by the way I’m 37 and have been married 20yrs. I was diagnosed 4yrs ago with narcolepsy, my husband was in denial about my disease so what I did was I asked him to go to my next appointment with me so that he can understand what I’m dealing with and he agreed and went, and my Dr explained everything to him detail be detail and it was a real eure opener for him and it also brought peace back into my home and my marriage. We have to keep in mind that this disease don’t just change our life, it changes everyone who live in the house hold with us life as well. To answer your next question no it doesn’t get better but it can be some what managed once your Dr find the right drug treatment plan for you, it took me 2yrs to find a treatment that some what work for me. You can not be upset or stressed in any way with this narcolepsy because you will immediately become fatigued. Ask your Dr about a drug called xterm is the only drug approved to treat narcolepsy and cataplexy since I have been on it I have had zero episodes of cataplexy and I have been on it for 3yrs. I pray your husband come around soon for your sake and you keep your head up and stay strong and fight this disease that’s what I do everyday. I will never give up! I will give out from fighting this disease first, but I will never ever give up! Best wishes to you.

Hello Donna T,

First all great advice given by the others below. Remember and work on "just being You". If you need to sleep - sleep! Your husband's behavior concerns me.

Take him also to the doctor and get him "educated". Watch and see if "he gets it" and attempts to change and adapt for you.

If there is no progress next step would be a "trained and good" marriage counselor - (I would strongly suggest Not a "psychologist)....If you want to know why not that type of counselor, I can share my experiences...

So depending how all that goes you should be looking for adaptation and positive change....for you!

There is a point and time in life for "wake up calls" and and if nothing changes to ("throw down the gloves") - Another words "this behavior towards you must change or else it is over"). No one deserves abuse of any kind nor should anyone tolerate it in their lives...

Marriages are mutual relationships, built on love and respect (both ways).

I hope things work out for both of you.


PS: Anxiety and stress tend to make narcolepsy worse for deal with.

Thanks guys for your kind words and advice. It’s nice to hear confirmation on what I thought I should do. It’s funny when I hear of other people in this situation I’d always say what is she doing staying with him but when in the situation it’s difficult! He somehow manages to turn all his outbursts on me and blame me from starting it when I had no part in it. I am a touch of a perfectionist and I suppose I don’t like to fail at things and I don’t want out marriage to fail but I think you are all right it cannot carry on like this. I have to return to work at one stage soon and I can’t handle the stress from that along with the stress he is creating at home. Horrible choice but unless he changes I will have to choose between them & I can’t afford not to work at the moment.

I bought a book yesterday about Narcolepsy which I read in a few hours. It was easy to understand covered all the symptoms, gave personal accounts of each and also had a short chapter outlining the need for supportive spouses & family etc & how marriages can break up due to lack of knowledge & understanding. I asked him to read it in his own time. Being an English teacher that would be no problem to him. His reply was “huh Narcolepsy - no way - it will just tell me you need to lie down… I’m not having that”… So I tried to explain it was just an account not an instruction manual & that I need him to understand it so we can move on from this and be happy for the first time in a long time. He reverted to his old tactics then… Inspected the house told me I was lazy & didn’t do enough housework & he went out to sit in the shed while he waited on me to make his dinner. The only reason there was no dinner was because I cannot drive the nearest shop is 10km away and he told me he would drive me to get some meat when he got home but he went to a friends house instead after work & was home when the shops shut. So then it was my fault. He then proceeded to shout at me that I’m allowed to drive and that the doctor is wrong and he wants another opinion because he won’t accept me not driving I’m too young not to drive. I’ve explained to him a million times I will be able to again but I am not allowed until I get the medication right.

He also spoke to 2 of his brothers on the phone last night & lately he leaves the room when anyone rings so I casually followed him & heard him telling them I am fine there isn’t anything wrong with me and the doctor made a mistake and I’m just taking the rest of the time off from work anyway. So I corrected him while he was on the phone. That did not go down well.

He also ended the night by barging into the bathroom while I was in the shower and attacking me over the way I had parked my car around the back of the house. I had moved it slightly yesterday so I could dig out the roots of trees in my back garden (a job he was meant to do 3 weeks ago). While he could still get his car out around me I was told I do not think of him at all & I do not care about him.

At that point I eventually snapped & lost the plot altogether. I broke down in tears again & told him that every second of every day I think about him, I kill myself every day to clean the house, make dinners he likes, bake for him, do all the jobs he has taken on to do just to make him happy. My entire day & existence surrounds him & only him. I don’t see friends anymore because he doesn’t like that and rings me every 2 minutes giving out & it’s just embarrassing. I told him I do love him very much if I didn’t I wouldn’t be taking this treatment. I told him I have Narcolepsy,I cannot change that. I have had all the time he has known me so nothing has changed apart from having a name for it now & being on a treatment plan that will hopefully eventually help me.

I also told him that I need him to educate himself about it and support me with it. It doesn’t mean I am going to stop everything I’m doing it just means I won’t be as stressed out everyday and I do need a bit of time to myself sometimes to start doing what I like doing again. I have defo lost who I am on account of his behaviour over the last while. I told him if he isn’t prepared to work with me we will never get over this & it’s over. I told him one more unprovoked attack like that over nothing and it’s time he moved out & back home to his parents that I cannot accept that behaviour anymore.

I think it all fell on deaf ears to be honest but at least I have now ascertained he is in complete denial about it all. He mentioned that he won’t talk to me about it because if he ignores it it isn’t happening and it better that way. He has always been like that any little thing that goes wrong sends him into a rage & he doesn’t want to know about it & he leaves it with me to get fixed and I dare not mention it until it is fixed.

I know for a fact he’ll roar at me again tonight over something ridiculous so I am going to have to stick to my word and ask him to leave. If that doesn’t make him want to work on it I know it isn’t worth it. If it does work I will defo attend marriage counselling. God knows we need it. I can’t remember the last time he smiled at me, surprised me or did something nice. While I always try to do that for him. I did some training as a counsellor but haven’t finished it yet. My husband also is a bereavement counsellor and support counsellor for children in his school. He is so into that it surprised me the way he reacted.

I also have an appointment on 28 April to review my first 12 weeks on the medication. I will encourage him to come with me at least then it may become more real to him. He acts like I have made up what they have told me. So I’d like to see him asking questions he has about it.

So we will see, hopefully he will come around if not I’m just going to have to move on with my life and change it to suit my own needs for once.

Thank you for the advice I really appreciate it, in some way it’s made me more confident in my intended actions now, whereas before I would say it but never follow through. Hopefully it works! :slight_smile: