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Narcolepsy Is Taking Over My Life. Please Respond.


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#1 mwright1035

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Posted 10 July 2013 - 11:15 AM

Hey Yall, I'm so thankful to have found this website. No one understands, and I know you do. I was diagnosised in February 2013, well to begin why im so lost.. every since my freshman year in hs I planned exetremely hard to be a naval officer by 21. I took two years of summer school and a full year of night school, & I even held a naval scholarship, and should be going to the university of Denver in fall. I graduated in may at 16 on a whole new stupid path. When I was diagnosised it disqualified me from any military branch and seriously I could have went insane. I was a control freak, my life has gotten to where it has due to my own actions and no ones else. Now i deal with this bs and have noooooo control. Even worst with hallucinations I hear child cry so loud all the time, I see them everywhere and i lost a child at a young age. & it is almost like I'm being haunted. & I'm always having attacks in front of groups of people, and they look at me like im crazy every time I laugh. I've always been social for good God im a cheer leader. So I have to explain this many times a day. It's even worst I used to be addicted to prescribtion medicine, and it took so much to dig myself out that hole and to go on a positive route. Now I'm forced to take medications, every day of my life?!?! I'm so scared ill relapse, im terrified to fall back down, & its so hard im on a low dosage of adral and throughout the day I take like 5 when im only supposed to take two, I already see it happening. & then the stupid side effects literally drive me crazy . From mood changes, to stravinggggg but not being able to eat. I feel like im developing a damn eating disorder. I didn't eat anything for 6 days but a sandwhich, & my body is seriously crying inside. I smoke cigarettes more and more. & in all I know this all is terrible for me. Idk what to do, I refuse to let narcolepsy define me, and im still working towards my dreams and im staying self motivated. But I'm getting to the point I just NEED to know someone understands. Someone knows the pain I'm feeling, and that someone doesnt think I'm just crazy. I'm a strong believer in God, i am beyond ambitious and i work very hard for everything i have. But this is another pot hole i really don't think I'm strong enough to crawl out.

#2 Hank

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Posted 10 July 2013 - 11:53 AM

You have a lot of strength in you. I think that is something we all share. This is a heavy and complicated illness to carry around. I have often felt like I was in a car race with only 3 working gears- while everyone else is cruising in 5th gear. We have to crank out more RPMs just to keep in the race. Eventually we're going to blow a piston. I have been there- and thank God (really-deeply) it is soooo much better now.

I have found that building a medical team has been extremely important. Here is what I have done:
Sleep medicine specialist- good for diagnosis and medication decisions. Not so great with helping me through side effects, discussing how to manage them or how to live with this illness. I was told repeatedly that I was doing great for someone with N because I had a job, a family and exercised a lot and was not overweight. The sleep docs did not listen to how hard it was to keep all that afloat.

Family Doctor- good for helping to manage my general health. She detected my vitamin D deficiency, low adrenal levels, pre-diabetes. There are health problems that we are pre-disposed to because of Narcolepsy.

Psychiatrist- very helpful for managing side effects from medications. They are well trained to listen and take these concerns seriously. Most of the side effects I have experienced have been missed or minimized by my Sleep doctors (2) which was really frustrating. When I went to my psychiatrist, she identified that they were medication related and communicated with my sleep doc.
For example, I had anxiety, depression and weight loss while on Xyrem and Provigil, Adderall and Nuvigil. The sleep docs and FP said these were evidence of a psychiatric disorder that needed to be treated with medicatiton. When I went to my psychiatrist, she consulted with the sleep doc, removed me off Xyrem and stimulants, treated Cataplexy with Effexor 150 mg (which is an SNRI). 4 days later, I had an appetite. My depression and anxiety cleared over the weeks. And prescribed Trazadone for my disturbed sleep. So, I have my life back.

Counsellor (PhD) in Behavioral Sleep Medicine- a clinical psychologist who is trained in sleep disorders. She has helped me identify triggers for Cataplexy and ways to manage it. She has trained me how to take naps- I never allowed myself to nap and just pushed myself relentlessly hard through sleep attacks. A counsellor who did not have the background to understand the medical complexity of N and C tried to equate N symptoms to depression and C to a "conversion disorder" and exaggerated stress response. And my auditory hypnopompic hallucinations (I hear music when I wake up) became evidence of psychosis.

So, I have had to hand pick a medical team that can teach me - not who I have to teach. I was reluctant to see a psychiatrist because I did not want to be labled as a "psychiatric patient". However, that did not happen and I do not regret my decision.

We really need to be listened to, taken seriously and helped- and that takes a team, not just a prescription refill.

Everything I read for N stated the importance of Health Care Counselling and a support group. When I looked for that it wasn't there. So I had to build it myself through trial and error. This is not like cancer or diabetes where there are numerous resources available. There are just too few of us and too little awareness of N.

I do not think you are crazy. I do think you do not have the right help. I think you deserve an enormous amount of credit for what you have accomplished and how you have compensated. I think you need support and a good team behind you. To stay with the race analogy, I think you need a pit stop with a good pit crew before your engine blows. Then you can decide to get off the race track and out on the open road, with the top down and a great CD playing. It is possible- you have what it takes- you have already proven that to yourself.

#3 NetiNeti

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Posted 10 July 2013 - 12:14 PM

It changes everything. Don't let it destroy you though. Hank is right. Educate yourself, build a support team.



#4 Ferret

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Posted 10 July 2013 - 02:03 PM

Great post Hank!

mwright...take a deep breath...you are at the bottom of the hole. You WILL climb out of it by sheer will power because YOU are in control.

Please take Hank's advice to heart. Finding the right support team and the right meds will take time but I'm confident that you are more than capable of getting your life back on track.



#5 sk8aplexy

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Posted 10 July 2013 - 02:10 PM

NetiNeti is right on.

It does change everything and one can not let it destroy them, educating/learning about the condition/disorder/disease and building a support team is all crucial.

 

We all have a different story and no two of us are the same.  Living with this condition/disorder/disease is more than tough and takes real strength (which often we ourselves can hardly note having, and/or at all, existing). 

In life we all win some and lose some, the condition/disorder/disease is a game changer but not a game breaker, by any means; with proper balance and proportion, both requiring continual awareness and constant attentiveness, one does succeed. 

Day to day, week to week, month to month, year to year, now and then random with unknowns, ups and downs; a roller coaster ride it is, or can be.

It becomes a lifestyle factor which one must adjust to, gauge, and fine tune for their own stability and comfort; it takes time and juggling, along with some good people (or perhaps, even, just one) in your corner.

 

Remembering, staying conscious to nature being nature, knowing that there are always others worse off and in more difficult circumstances within the world; for me, is very important.

As is also helpful and important for myself; reflecting upon what it is that I do have and what all I have managed to do, throughout my life, regardless of the condition/disorder/disease /s impact and/or presence.

A gentle step backwards can result in many steps, forwards.

 

This forum and the grand amount of other resources on the internet, full of information regarding this condition/disorder/disease, has helped me tremendously in coping, venting, and most valuable of all, learning.  

Stay strong, you can get through and beyond.

 

-> Hank does give great advice.



#6 DeathRabbit

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Posted 11 July 2013 - 03:14 PM

I am seeing a psychiatrist for symptom/side effect management as well. My sleep doc wasn't bad, but beyond diagnosis and prescribing stimulants and/or Xyrem, he's not useful for much.