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Recently Diagnosed, Having A Hard Time


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#1 bibia

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Posted 17 September 2008 - 02:00 PM

Hi all, since June this year I've been trying to cope with narcolepsy. I have to say I was kinda relieved at first with the diagnose, as I finally found what was wrong with me. The Dr. told me we could just treat the symptoms with the right medication. Also, my doctor does not believe in a link between N and autoimmune. Do any of you have a doctor that does?

Now I know it is much more complicated than that. I haven’t been able to go back to work and I have no idea when I will. The first med, Dextroanphetamin, kept me awake, but gave me hypertension, manic compulsive behavior and made my hands shake like crazy, which is very incompatible with my work. Provigil didn’t work at all, if possible made me feel even worse. Now I’m on Ritalin, 30mg in the morning and I still can’t have to nap between 9 and 11am. I did started Zyrem a week ago, I just had my first full night of sleep, but still feel very tired.

I really need to hear from people who learned to cope and to be productive living with narcolepsy! Right now I feel like I’ll never be able to function again. I’ve been through a lot in life and I’m not the kind of person that feels sorry for herself, but for the last weeks I can only cry and feel helpless. I need to hear from you guys that this is not the end of being a good Mom, being a good wife, and the end of professional success. Please talk to me!

#2 Mike M

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Posted 18 September 2008 - 12:22 AM

bibia,

It is not the end of anything. At the same time, I know that I am finally beginning to comprehend what I can and can't do now (over a year after my diagnosis). Just in the last few days have I truly felt hopeful again. I don't say that to upset you, but to be realistic. This condition is tremendously difficult. It takes time to find the correct meds. It take time to figure out the "baseline" once the drugs settle into their routine. One of the toughest things for me has been accepting the reality that I am a person with a disability. I can't do what a person without narcolepsy can do. That is simply the truth. Having said that, though, I also know that I am far more aware of what things are most important in my life. The blessing of this condition is that I have decided to put my wife and daughter at the top of my priority list. I am also learning to live my life far more intentionally. Daily, I am mindful of the gift of energy. I may not have much, but I cherish what I am given. Hang in there. Cry and rant whenever you need it. This space is wonderful, because the people who are here "get it." While none of us has the same story, we all understand the trials that this disease can bring.

#3 greatbig47

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Posted 18 September 2008 - 01:51 AM

QUOTE (bibia @ Sep 17 2008, 03:00 PM) <{POST_SNAPBACK}>
I really need to hear from people who learned to cope and to be productive living with narcolepsy! Right now I feel like I’ll never be able to function again. I’ve been through a lot in life and I’m not the kind of person that feels sorry for herself, but for the last weeks I can only cry and feel helpless. I need to hear from you guys that this is not the end of being a good Mom, being a good wife, and the end of professional success. Please talk to me!


Gosh, Bibia...Your not at the end..YOUR AT THE BEGINING! You are basing all your feelings on one variable...the past. There's another variable at play here...the future.

What if your future held something mind-blowingly great for you? That would change how you feel, right? Consider looking at all you've been through, and combine that with a future of everything that makes your soul feel content (and then some).

Allow yourself to picture you as a great Mom...and a GREAT wife...and having professional success that's bigger than you can imagine. I think that is the trick though...you MUST try to imagine it, otherwise it really will never happen. What we think about we bring about.

I'm glad you found us! We're glad you are here smile.gif
There are some great people on this site....you'll see smile.gif

-Stu

#4 Chuck Z.

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Posted 18 September 2008 - 01:49 PM

I was initially diagnosed almost a year ago now. At the time, I was working, making six figures and doing whatever I wanted (less the constant crashes, but I kept going). I drove myself to oblivion, I was a complete jerk and constantly sought out confrontation to keep my adrenaline levels up. Eventually, I lost my job, lost the adrenaline, lost hope. I have now learned to focus on other things besides making money and being "top dog" in my field.

To quote an online friend, I am learning to "shed my skin". (Stu may know of this quote, too, oh wait, he was the one that said it) cool.gif

And as Stu said, it's not the end, it *is* a beginning, in fact, the day I started the process for disability, I just blurted to my wife:

"Today is the first day of the rest of my life".

I now have time for so much more: my wife, my four kids, DIY projects, friends, family, photography, art, music, and ... on ... and ... on ...



#5 Kimberly

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Posted 18 September 2008 - 01:53 PM

Hi Bibia,

Although I'm not a mom (unless you count my greyhounds), I am a wife, college educated, and most recently was a manager-level contributor at a Fortune 25 company.

I completely understand your concerns. My work has been a significant symbol of my success and self-worth, and when I was diagnosed with Narcolepsy last year I had started to notice how my symptoms were impacting my ability to perform at a high level in the office. In addition, my marriage is the most important relationship in my life, and last year my husband was starting to feel isolated because of the amount of sleep I needed outside of the work day.

You are doing the right thing to take this time now and put yourself above everything else. (I took about 2 months off work earlier this year to get my meds straightened out, and when I went back to work I only went back part-time until I felt comfortable that I could handle the schedule.) Do not feel guilty -- your company got along before you started there, and they will get along while you are away. You and your spouse are co-parenting your child(ren), so give yourself permission to take this time and get things right with you. Being tired does not mean that you love them any less -- it just means that you have to remember to express it when you ARE awake and alert.

For some people with Narcolepsy, they are able to arrive at a medication regimen fairly easily. For others, it takes time. It is so beneficial to be clear of the distraction of work while you are figuring this out -- it will allow you to "listen" to your body and know when your good times and bad times are. This way once you're on an even keel, you'll know when to plan the activities that are the most important to you.

My time away actually helped me put priorities more into perspective. I was working 12-hour days and still not getting things done, some of it due to the N but some of it due to the fact that my employer required feats of superhuman strength and stamina. That put my husband and my own sanity on the back burner. That's not fair to him, or to me! When I went back to work, I had a lot more clarity of purpose and knew what was important TO ME. I was able to draw the line -- something I'd never done before. I consider that a blessing.

I think it's a good thing that you are treating the fragmented nighttime sleep and excessive daytime sleepiness of Narcolepsy separately. With separate medications. You have to treat both to be in balance. I started out just with the stimulants, but I still had so much breakthrough tiredness. Once I started the Xyrem, my days improved as much as my nights did.

Don't forget to look at other aspects of your behavior so you can set yourself up for success. This includes going to bed and getting up at the same time every day (including weekends), taking programmed naps (15-minutes or less, about an hour ahead of your 'lowest' time of day), making healthy food choices, and getting the right amount of physical activity. All of these things can help with your energy levels and sleep as well. You'd be shortchanging yourself and your family if you weren't closely examining these aspects and making appropriate adjustments.

You can be (and ARE) a loving wife and mother, and a productive employee as well. But for right now, focus on being a human being with a medical condition that needs to get under control. And be prepared to define a "new normal" too -- it's scary, but liberating at the same time.

Welcome! You will find nothing but support here.




#6 bibia

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Posted 18 September 2008 - 11:21 PM

Mike, Stu, Chuck, Kimberly

Thanks you so much for your comments! That makes feel a lot better.

it is amazing to know that there are people out there who understands what we are going through.
I have to admit I was feeling quite lonely before I found this forum. I'm not saying my family and friends are not supporting me,
it is just that this condition is so uncommon that I had not idea how other people were dealing with it.

Just as some background, I changed careers 2 years ago, and now I'm a pastry chef/baker.
One of the reasons I chose to leave the corporate life/world and become a pastry chef was exactly to do
something that would make me happy, and give me more time with my family, even though it came with a big cut on the pay check rolleyes.gif

On my last job as pastry chef, I had really odd hours. One day, I would start at 4AM, others at 5AM, and even sometimes at 2AM.
I would only know what time to arrive the day before, so that did mess up with my sleeping hours.

When I quit that job my plan was to continue baking from home, and making my own hours.
But, this is not working as expected right now, and that makes me fell horrible. For instance, last week I had a wedding cake to make, and it was
soooo hard and stressfull. In the end, I delivered the cake and the bride was very happy and excited with the result. But only me and my husband know
how hard (and almost impossible) it was to get it done.

I'll try to change my way of looking at N. As professor Randy Pausch said on his 'last lecture', the "The brick walls are there to give us
a chance to show how badly we want something." Maybe this is our brick wall, and we just have to fight harder for what we really want, what is really
important for us.

Thank you again for taking the time to write me back. It helps a lot, and I'll take every word in consideration, and I will keep you guys updated.

-Bibia



#7 Mike M

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Posted 18 September 2008 - 11:55 PM

bibia,

Good luck. More than anything, it is about being at peace with yourself, at least it is for me. I finally am feeling that I can say, this is what I can do, and that is okay. I can't even imagine how stressful it would be to bake (let alone make a wedding cake) while coming to terms with narcolepsy. I am thrilled that you are finding support here.

#8 hooliganzz

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Posted 22 September 2008 - 10:02 PM

QUOTE (bibia @ Sep 17 2008, 08:00 PM) <{POST_SNAPBACK}>
Hi all, since June this year I've been trying to cope with narcolepsy. I have to say I was kinda relieved at first with the diagnose, as I finally found what was wrong with me. The Dr. told me we could just treat the symptoms with the right medication. Also, my doctor does not believe in a link between N and autoimmune. Do any of you have a doctor that does?

Now I know it is much more complicated than that. I haven’t been able to go back to work and I have no idea when I will. The first med, Dextroanphetamin, kept me awake, but gave me hypertension, manic compulsive behavior and made my hands shake like crazy, which is very incompatible with my work. Provigil didn’t work at all, if possible made me feel even worse. Now I’m on Ritalin, 30mg in the morning and I still can’t have to nap between 9 and 11am. I did started Zyrem a week ago, I just had my first full night of sleep, but still feel very tired.

I really need to hear from people who learned to cope and to be productive living with narcolepsy! Right now I feel like I’ll never be able to function again. I’ve been through a lot in life and I’m not the kind of person that feels sorry for herself, but for the last weeks I can only cry and feel helpless. I need to hear from you guys that this is not the end of being a good Mom, being a good wife, and the end of professional success. Please talk to me!



Hi bibia. I wanted to reassure you that you will be able to still be a good at everything that you were before- maybe even better... because before you were doing it without knowing what was going on! I was diagnosed with N eight years ago and I still have a struggle with my meds every now and then, but I noticed that how you responded to the different meds is very similar to me. When I was first diagnosed it seemed like FOREVER for me to be able to get a med regime that made me feel even a little better- I was happy to finally get a diagnosis and I expected that my meds would make most of my symptoms disappear. (I have N w/ Cataplexy... do you also have cataplexy?)
So what I found, although I know that everyone responds differently to meds, is that the Dex worked really well for me. At first I had a really difficult time adjusting because it definitely does cause that "speeded up feeling" How high of a dose were you on? After my initial dose was lowered I was able to make it with 60mg a day in 3/20mg doses. This worked well and I found that the majority of those side effects wore off after about 2 weeks. I found that I did build up a tolerance so when it came time to switch provigil was next on the list. I agree with you, I couldn't even tell that I was taking a medication at all and even in conjunction with other meds I did not notice any benefit. Ritalin has also worked for me, but instead of just taking it in the morning I have found that 3 doses/20mg can also work decently with the occational fourth dose. (No xyrem yet though, because my husband is a firefighter and gone often at nights.) I too am exhausted in the morning a couple hours after I wake up. The evening seems to be the most alert time for me.
So enough about my meds- I just wanted to let you know that it may take some trial and error and that you may have to switch around a little bit. The best thing you can do is listen to your body (okay not the part that says..."I'm tired, go back to bed.") Try to plan the busiest parts of your day when you are most alert. Easier said than done with family and work I am sure! You will make it through this time... but in the beginning there are so many changes not only for you but for your family. I'm sure they are as relieved as you are that you are diagnosed! I'm 25 almost 26 so I was really lucky to be diagnosed early. Now I am finishing full time nursing school and working about 20-25 hours a week and hoping to start a family soon. Of course, I always wish I could get more accomplished but I still take advantage of all the nap times I can get.
You will be able to do this!
(Sorry for such a long post- I don't really usually reply to these because I really value my nap time! smile.gif Guess I got carried away with the pep talk LOL)

#9 Mike M

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Posted 22 September 2008 - 10:58 PM

QUOTE (hooliganzz @ Sep 22 2008, 10:02 PM) <{POST_SNAPBACK}>
Guess I got carried away with the pep talk


I hope you will get carried away more often! Nap time is a beautiful thing, but your post was wonderful. Please consider posting more. I certainly could do with more of your wisdom.