New to narcolepsy - my story

General
1

Hi All,

I just wanted to introduce myself. Firstly this is very unlike me to join a support group ( as in my work, i am usually the one facilitating the support) however i have really been feeling so alone about my experiences.

About 6 weeks ago my 2nd car accident from falling asleep at the wheel and a sleep study i was diagnosed with Narcolepsy. Its pretty obvious that i have issues with sleep. Im young, healthy, eat well and active, but i was alaways tired and napped all the time. I just though it was normal - for me that is. I have been diagnosed with Chronic Fatigue, Depression, having my thyroid checked, in the years leading up to the diagnosis.

When i first heard, I really didnt believe it ( just like i didnt believe other diagnosis), Im in the social/community/medical/ health field and studying psych science and from what i knew about narcolepsy ( stereotypes ,duce bigalo) i certainly didnt have that. I thought the stress of my job was consistently wearing me down.

However - I know understand that I am narcoleptic, Sleeping all day after sleeping all night isnt normal, not being able to mve for hours because your so sleepy isnt normal. My dreams and night patterns arent normal. I have looked upon all the reading info I can get my hands on, but the info is so brief, considering narcoleposy is different in all people. For instance - i get sevre migraines after sleep attacks that put me out for the rest of the day.

My symptoms have been progresing over the last year or two. It started with EDS, sleep attacks ( that have increased substantially over the last 2 months, from 2-3 times a week during passive activities to every second day that can potentially put me out for the day. A week ago I ended up in hopsital becasue "cataplexy" mixed with Sleep attacks, paralysis, sevre body weakness, took me out for hours, intermittent periods where i was in control- i tried to speak, slurring my words or just not being able to respond and slumping back a minute latter. I wasnt feeling well earlier that night and had a terrible sleep so I know that i was completely lacking sleep which caused the attack ( additionally i was very emotional and upset about the experience). Doctors had no idea what N was and said it was just my migraine ( because i get one after its finished) My symptoms seem to be getting worse, so im seeing my specialist again next week. I was traumatised by my experience in the hospital who at forst thoughty i was having seizures, blackouts, evern though i told them about my diagnosis - they had to google it.

Anyways what im trying to say is that im finding it a little hard to cope as it is all new. I feel so sorry for my husband.

2

terrific post :)

3

Hello Yellowdog -- you have friends here who know exactly what you are talking about and how devastating it is to have this illness. Look around the site and you will find stories that are similar to your own. You are not alone. Welcome. I hope you find the information and support you are looking for and, if nothing else, a forum for you to relate what you are going through. best regards, copingwithnarcolepsy

4

Hello Yellowdog,

Thank you for sharing what you are going through with us! That is a wonderful first step! For now I would just like to say a couple of things. Some of them just continue to reaffirm in your heart. I hope you will find these suggestions to be very helpful, comforting and healing. Take and chose what works for you :)

1.There is Hope! You will find answers and blessings if you look for them.
2.Your husband loves you!!! You are blessed!
3.Thank God you know what you are dealing with.
4.It is different for everyone, this will be a journey for you to get to know yourself in a better way and how it affects you.
5.Enjoy all of the Good parts of you LIFE to the Maximum!!! movies, food (the very best organic you can find), your friends and your relationship with your husband. All good things you can find.
6.You might not realize it but you are on the healing path already!!!!
7. Find the VERY BEST Supportive Primary Car Physician - ASAP - you need the very best! Don't settle for anything less than a doctor that cares, loves and respects you as a person. This is most important!!! They will not heal you but they will Help you.
8. You are more than this illness!
9. If you need to file for SSDI - find the very best national company from day one! (send me a private message and I'll explain why)
9. Remember the words of Winston Churchill - Never give up!!!
10. And, in little ways be good to yourself every day - always :)

There is more that I will try to write at some point. I have a number of autoimmune diseases that I'm dealing with and one of them is narcolepsy. I had it all my life and just found that out!!!! In a way finding this out now was a blessing because it finally makes sense of a lot of the things I've been dealing with through my life. So much of my past makes sense to me.

Take care.
Ranger

PS: I purposely did not say anything that would be negative. There are things to avoid and be cautious with, when going through this experience. Those things I will try to write about at some point. Being able to write this is one of my rare moments of clarity....(use to write often)

It's my understanding that there has not been one good book written on Narcolepsy in over 10 years. (All, please correct me if I'm wrong about that...)

5

Hey there Yellowdog, your story sound a lot like mine...

My symptoms were mild at first, and then simply manageable, but over time became the type of problem that leaves a guy completely unable to work a 9-5.

I also have migraines, and something to consider is that there is a form of migraine (a rare form) which is called hemipelegic migraines. They're known for having 1-sided paralysis, severe muscle weakness that persists weeks after a migraine, but can also cause total paralysis, inability to speak, short-term memory loss, and fatigue.

I only say this because I happen to have both, and differentiating between the two can be next to impossible. And it took myself quite sometime to figure it out and come to terms with having 2 disorders with similar, yet slightly different, set of symptoms.

Also, the medication I used for narcolepsy, Sodium Oxybate (Xyrem) was triggering the migraines daily, so there was that as well.

Doctors, especially those at ER's, frequently have a very poor understanding of anything other than the most common traumas and ailments, broken bones, lacerations, fevers, heart attacks, they know those. Migraines, Narcolepsy, much less so. I've had some really horrid experiences in the ER as well.


There's a lot of improvement that can be made simply by mitigating the most common triggers, heavy meals, strenuous activity, and taking a regular nap in the afternoon can make a big difference, though I wouldn't say they will be enough to get back to "normal" by themselves.


And I agree that the common stereotypes are misleading, and only serve to keep those who may be suffering from the disorder from considering it as a possibility.

My mother avoids driving long distance due to sleepiness, and since I was a small child she would fall asleep while reading me stories on a regular basis. I'd say at least 50% of the time she read to me or watched TV she'd fall asleep, often in mid sentence.

Like me, she also wakes up at 3AM with a hard time getting back to sleep. One of the lesser known things about narcolepsy is that it largely stems from never reaching that really restorative deep sleep, and since we bounce around in lighter sleep we often wake up in the middle of the night.

But despite all this, she won't consider the possibility, won't get tested, just carries on saying that she's perfectly fine, that since she doesn't have the symptoms she's heard about that she can't possibly have it.

One other thing, is that the bulk of the symptoms of narcolepsy are due to that lack of deep sleep, and once you start getting any of it back on a regular basis, it can take some time to actually feel the benefits It's essentially like sleep deprivation, one night's not going to cut it. It would be the same as expecting someone that's completely dehydrated to feel their thirst quenched after a half glass of water.

Dan O.

6

awesome response Ranger, that was really cool.

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Ranger, would you be willing to turn your response into it's own Discussion. I think it's one of the very best responses I've seen on Ben's Friends and other members would really benefit from seeing it. If you do, could you send me the link please?

thx

Scott

8

Hello Scott,

Thank you for your comment.

Please email me and I will try to answer and explain,

Take care,

Ranger



Scott Orn said:

Ranger, would you be willing to turn your response into it's own Discussion. I think it's one of the very best responses I've seen on Ben's Friends and other members would really benefit from seeing it. If you do, could you send me the link please?

thx

Scott

9

Thank you so much for all your support - it means so much to hear your feedback. Thank you ranger, Belbolboz99 really really helpful.

Thank you again

10

Hello All,

Anyone have a clue why we can't sleep at night? Does any one get irritated at the "sleep now" type attacks.... Is anyone using Light Therapy? How about odd appetites?

Speaking of "Sleep now"...it's time but I don't want to...be back later!

Roger

11

Ranger,

It's because the brain looses the ability to regulate sleep patterns due to a deficiency in creating the neurotransmitter hypocretin, or orexin, the scientific community has apparently yet to settle on a name...

http://www.ninds.nih.gov/disorders/narcolepsy/detail_narcolepsy.htm
http://en.wikipedia.org/wiki/Orexin

It's also likely that narcolepsy is an autoimmune disorder, because the genetic research shows the loss of the very few neurons that create this critical neurotransmitter are killed by the body's own immune system due to a genetic mutation.

In other words, a genetic mutation may be responsible for our immune systems which normally attack viruses and bacteria to attack the cells in our brain which are tasked with creating the signals to go to sleep or stay awake.

Article on research at Stanford regarding narcolepsy being an autoimmune disorder:
http://www.eurekalert.org/pub_releases/2009-05/sumc-nia042809.php

Also relevant, that link with autoimmune disorders and narcolepsy may go a long way to explaining why many people with narcolepsy have other autoimmune disorders.


Dan O.

12

Hello Dan O,

Thank you for the info!

Yes, I have other autoimmune disease issues also.

Thanks again!
Ranger