NarcoSlayer's story

General
1

I have tried every medication Narco combo package available… Currently on Xyrem,Ritalin and D-Amphetamine. Before I was diagnosed with Narco my family and friends use to call me " Supermom " Being in Law Enforcement I would work my regular shift then rotate into my multiple other off duty cop jobs then come home and take care of my 6 children like a " Champ " I would/could engage in physical, mental,and social activities. I would/could clean, cook, taxi drive kids around and attend my children’s school activities and sporting events. I would/could enjoy date night with my husband Shea. I enjoyed going to mass and enjoyed the old life I use to have…
After being diagnosed with Narco my life has been " DEVASTATED / SHATTERED " I lost my 20 yr Police Career. Even being on medication there are days I can stay awake for a few seconds at a time and other days maybe stay awake up to 30 mins. Automatic Behavior is a hot mess !!! Family " Stated " I do yard work and don’t recall any of it. When I would drive I would end up in the wrong location or pull over and go to sleep and hours would pass by. I don’t dare go shopping anymore solo due to the fact people at Walmart see me asleep slumped over the grocery cart and assume Im drunk. Cooking meals oh lord, only if my husband or older teens are home. Super scared of burning house down due to my sleep attacks. Cleaning house is an all day event if it even happens. Hard to accomplish any task when you suffer memory loss. I have put milk in my dryer, clothes in my fridge, drove my kids to church instead of school, held full blown conversation at work while making arrests. Qualified with my state police firearm training. Scary thing is I don’t remember any of it…
I suffer Hypnagogic Hallucinations. I have seen, smelled, tasted, and felt some weird stuff with Hallucinations. I have woke up with scratches and bruises on my body with no recollection/explanations. Yes I have seen a Neurologist and have physical documentation ‘’ I’m not crazy ‘’
I have mild Cataplexy. My eye will droop jaw drops and watch out, I have some aka STROKE SPLURRED SPEECH.
My muscles feel week, body temp is at frozen, my thought process is a fog and not sure why the " Beeeeeeep " my hair is failing out.
I’m beginning to wonder lately which is worse my Invisable Narco Disability or my Enduced Dark Depression. I feel trapped in what I call the Narco Grieving Process. 1. DENIAL 2. ANGER 3. BARGAINING 4. DEPRESSION 5. ACCEPTANCE
Family does there best to support me but my kids find it hard to understand, I can’t blame them when they state ‘’ MOMMY YOU LOOK HEALTHY, WHY ARE YOU LIKE THIS NOW " My teens are embarrassed due to me falling asleep at sporting / school events. My husband resents the two income family situation is now one. I have suffered isolation from friends and co workers. My disability has brought on anxiety, stress, failure, shame, and anger!! I have worked from age 15 and served in Law Enforcement my whole life and do you no where that gets me? Hella no where with this Invisable disability. Yes, my pride is to high for hand me outs However, being forced to apply for ssi disability is icing!!! Look that ssi needs to be revamped, Depression can’t even hold a candle to that. No one that I’m aware of has ever been approved here in Nebraska under 40 for Narcolepsy.

I was diagnosed with narcolepsy after pancreatic surgery. Family just chalked it up to massive surgery removal of 75% pancrease, spleen, and gallbladder that my body needed extra sleep. I couldn’t shake the symptoms and was sent to Nebraska sleep studies. Test confirmed Narcolepsy. I started out and tried to stay positive but that has been sucked out of me after trying every med combo, strict structured daily activity routines etc… now I’m here sharing my story hoping just maybe someone can understand my situation and not judge me. Ps please excuse any miss spelled words, God knows it took me 5 hours just to type this, Thank you.

2

Hi Narcoslayer,

I'm so sorry to hear about the devastating affect of narco on your life. I'm glad you found this group and hope you will be comforted by the support you will find here. How long ago were you diagnosed? How long have you been on your narco meds?

Working was extremely difficult for me and I had no social life until I found a doctor to address my extreme fatigue. I'm now taking Nuvigil and Vyvanse and was feeling almost normal until recently. I'm having more bad days and think I need to increase my Nuvigil I also have have episodes of coma-like sleep - I'll sleep for 18-22 hours for 3-5 days, each day sleeping a little less until I'm normal again.

If your meds aren't helping enough, perhaps your doctor can change your medication? Do you like your doctor, do you think he/she is giving you good care? I ask this because I had to go through several doctors until I found one that listened to me and addressed my health issues - I also have an auto-immune disease, Psoriatic Arthritis. So, my doc does double work for me - helped me get narco med and helps me manage my Psoriatic Arthritis.

I have a referral to see a neurologist and I'm looking forward to getting his/her opinion on my daily narco meds and how to avoid or reduce my sleep coma episodes. I'll share on this forum and info on new meds that are available, if any.

I hope you will continue to seek support here. We are here to help and listen.

warmly,

Frances

3

Dear NarcoSlayer,

Wow, don't worry about spelling mistakes here. I invent new words talking often. We certainly understand and not "judge" you. Your honesty is courageous and actually helps all of us who share this disease with you. Often when each one of us thinks we have it hard we meet or hear of someone else, like you shared above.

I'd like to find the perfect words to encourage you. Maybe just a few thoughts will help.

There are stages we go through certainly, Shock, denial, anger are some of them. You have a lot going for you now; obviously your honesty, past training, and "a family around you" and sharing with us. It will take time for your family to grasp the changes, and it will take time for you also to grasp these changes.

You have lead a dedicated, hardworking life and now that changed. It pretty hard to accept that for all of us and at times even now I ask myself "What, I have narcolepsy"....that's when the brain fog/sleep now/scramble my words/ starts kicking in and I have to drop everything and sleep.

This is like a survival situation: Where am I and what resources do I have and what do I need to get back to "fort living room" (the best that it can be).

Ask yourself for a moments, What is the most self nourishing uplifting thing you can do just for a few moments to find a sweet calm spot? Maybe, a short walk, a favorite movie, (coffee, maybe a new hobby) art, music. Writing like you did here :) Something that will let you pause and rest for a moment?

(I know what you mean about 5 hours of writing. Recently showed 1. page to someone and they said "you can write!" I said yes, it took me 2 hours....Sometimes I can't write with a pen but can type, how odd is that? How do I explain that to others?

Lastly it sounds like you have carried the "weight of the world for all those around you". Now it's time for you to take the best care of yourself. That's a new concept for us "weight of the world lifters"...

Things will get better slowly, a little bit at a time, the "sun" will come back and shine some new light and life through the process of learning and accepting these changes and challenges.

My journey was like a freight train running off the tracks all at once. If you named the cars I probably went through it...

About the SSDI process, don't discount the "award rate" by statistics. Contact a company called ALLSup from day one. They will help you through this process.

(I started working at 14, the "responsible one" in the family)...

May you be blessed and guided in your journey, you brave soul!

Remember, never quit :) you still got a "lot of fight" in you :) lady!

Ranger

PS: I just ran out of "gas"....

4

Dear NarcoSlayer,

I commend you for speaking and reaching out. We are here with you and for you. We understand and can identify with what has happened/is happening to you

Please note that Xyrem can cause debilitating depression for some people and it can lead to suicide. I've been on and off of it for the past two years and I think I'm finally done. It's been over two weeks since I've taken it and I'm just beginning to care about anything or anyone. I didn't know that I could be so devoid of life. And there are no antidepressants that counteract its effects. Please, please consider checking on this. I never knew it could be so bad.

You might also want to be assessed for other health issues, especially autoimmune. FYI, thyroid issues cause one's hair to fall out, body tempts drop. I have Hashimotos Thyroiditis and the symptoms are so similar that it seems to confuse most doctors because they are myopic (oh, and perhaps a tad egotistical?), so you may have to get creative to find out what's going on with you, which is very difficult considering your exhaustion and lost time.

Yeah, I look fine and feel like I'm 100+ years. I've been working on getting my narcolepsy meds right for over a year and with all my other health variables, it's daunting. My memory is shot, I'm always sleepy and if I didn't have my husband and pets, I wouldn't even bother. (The rest of the family and most of my friends are pretty much gone from my life at this point since I don't have the energy to keep in touch. I'm very lucky for the few that understand and support me.) My doctors don't bother speaking to each other and get ruffled when I remind them (if they're really listening, that is). But I have hope and that keeps me going.

Please keep in touch, let us know how you're doing and I'm available if you'd like to have a private conversation online.

Kathy

5

Hi Narcoslayer,

I forgot to ask you if your Human Resource department advised you of your rights as an employee with a disability. Did they ever try to accommodate you or give you time to find the right treatment so you could work? If not, perhaps you have a case to be reinstated or offer a different type of job. Just a thought.

I know this is any issue for many people on my auto immune forum - people are rushed out the door without any effort to accommodate their disability as required by law.

6

Kathy,

Good idea about checking your thyroid! And you said it perfectly - doctors can be myopic !!! I think most of them. My last labs showed low thyroid and I have to increase my thyroid med - yes, I also had a thyroid auto immune disease - Graves' disease about 15 years and now have another auto immune disease, Psoriatic Arthritis. I was told that often people have 2 or more auto immune diseases and I read that narcolepsy can be an auto immune disease?

I fired several rheumatologist until I found my current doc, who is amazing. It was worth all the time and effort to find him and I'm so grateful to have him as my doctor.

kwoman said:

Dear NarcoSlayer,

I commend you for speaking and reaching out. We are here with you and for you. We understand and can identify with what has happened/is happening to you

Please note that Xyrem can cause debilitating depression for some people and it can lead to suicide. I've been on and off of it for the past two years and I think I'm finally done. It's been over two weeks since I've taken it and I'm just beginning to care about anything or anyone. I didn't know that I could be so devoid of life. And there are no antidepressants that counteract its effects. Please, please consider checking on this. I never knew it could be so bad.

You might also want to be assessed for other health issues, especially autoimmune. FYI, thyroid issues cause one's hair to fall out, body tempts drop. I have Hashimotos Thyroiditis and the symptoms are so similar that it seems to confuse most doctors because they are myopic (oh, and perhaps a tad egotistical?), so you may have to get creative to find out what's going on with you, which is very difficult considering your exhaustion and lost time.

Yeah, I look fine and feel like I'm 100+ years. I've been working on getting my narcolepsy meds right for over a year and with all my other health variables, it's daunting. My memory is shot, I'm always sleepy and if I didn't have my husband and pets, I wouldn't even bother. (The rest of the family and most of my friends are pretty much gone from my life at this point since I don't have the energy to keep in touch. I'm very lucky for the few that understand and support me.) My doctors don't bother speaking to each other and get ruffled when I remind them (if they're really listening, that is). But I have hope and that keeps me going.

Please keep in touch, let us know how you're doing and I'm available if you'd like to have a private conversation online.

Kathy

7

Great advice Kathy!

Re: interactions and side effects with meds. I know it's very hard to do but I encourage people just to walk 20 minutes a day to help with depression. I;ve read clinical studies that it is an effective therapy for many. Sounds simple but effective. I've found the most difficult part is getting my coat on and pushing myself out the door. It's harder in winter. Another thing that might help is "light bright therapy" for "SAD" - even my past doctor got the unit I was using and reported back it helped her! They are on Amazon for about $70 (LED lights) in the right light spectrum.

Take care all!

Ranger



kwoman said:

Dear NarcoSlayer,

I commend you for speaking and reaching out. We are here with you and for you. We understand and can identify with what has happened/is happening to you

Please note that Xyrem can cause debilitating depression for some people and it can lead to suicide. I've been on and off of it for the past two years and I think I'm finally done. It's been over two weeks since I've taken it and I'm just beginning to care about anything or anyone. I didn't know that I could be so devoid of life. And there are no antidepressants that counteract its effects. Please, please consider checking on this. I never knew it could be so bad.

You might also want to be assessed for other health issues, especially autoimmune. FYI, thyroid issues cause one's hair to fall out, body tempts drop. I have Hashimotos Thyroiditis and the symptoms are so similar that it seems to confuse most doctors because they are myopic (oh, and perhaps a tad egotistical?), so you may have to get creative to find out what's going on with you, which is very difficult considering your exhaustion and lost time.

Yeah, I look fine and feel like I'm 100+ years. I've been working on getting my narcolepsy meds right for over a year and with all my other health variables, it's daunting. My memory is shot, I'm always sleepy and if I didn't have my husband and pets, I wouldn't even bother. (The rest of the family and most of my friends are pretty much gone from my life at this point since I don't have the energy to keep in touch. I'm very lucky for the few that understand and support me.) My doctors don't bother speaking to each other and get ruffled when I remind them (if they're really listening, that is). But I have hope and that keeps me going.

Please keep in touch, let us know how you're doing and I'm available if you'd like to have a private conversation online.

Kathy

8

Thank you everybody for your suggestions and support!!!!

I do like my Dr. and I trust his judgment. When I was diagnosed on Nov 16,2013 he started me on Provigil and Nuvigil then concerta, Adderall Xr. then found out everyone is different via DNA and he said I was more of a Meth person lol. He explained its the different salt compounds/combo that determine in the meds that will be affective for each person. But what I have noticed is the body starts to build up a tolerance to these meds and it feels like its no longer working.

I also had to lower my Xyrem due to bedwetting eeegggh embarrassing. In the mean time I have also gone to Primary Dr. and had my thyroid checked, results were borderline. What does that mean Dr?

Well I guess nothing bad because Dr. said we will test u again in 3 months. Uuuuum ok.

As far as my Police Dept. the only accommodation that I was offered was a day shift position.

They made it very clear that I was lucky to get that!!!

Not gona lie , I was kinda pissed off. My thoughts were omg I have given how many years to this dept. I have never taken Fmla or any maternity leave with any of my 6 children, called in to work 4 times in 20 yrs due to sick kids and that's it?

Hard pill to swallow however, held my head high and kept working.

Narcolepsy won the fight eeeeggghhhh via work situation...

Dept said I was to much of a liability due to Narco and put me on Long term disability till my leave ran out, and even though I'm fully invested in my dept. your not eligible to pull from pension till 62yrs.

Now I'm in process of Ssi Disability waiting on Alj hearing.

Now I have never heard of bright light therapy, I'm super interested. Any good results?

Well thanks again everyone for the support.



Ranger said:

Great advice Kathy!

Re: interactions and side effects with meds. I know it's very hard to do but I encourage people just to walk 20 minutes a day to help with depression. I;ve read clinical studies that it is an effective therapy for many. Sounds simple but effective. I've found the most difficult part is getting my coat on and pushing myself out the door. It's harder in winter. Another thing that might help is "light bright therapy" for "SAD" - even my past doctor got the unit I was using and reported back it helped her! They are on Amazon for about $70 (LED lights) in the right light spectrum.

Take care all!

Ranger



kwoman said:

Dear NarcoSlayer,

I commend you for speaking and reaching out. We are here with you and for you. We understand and can identify with what has happened/is happening to you

Please note that Xyrem can cause debilitating depression for some people and it can lead to suicide. I've been on and off of it for the past two years and I think I'm finally done. It's been over two weeks since I've taken it and I'm just beginning to care about anything or anyone. I didn't know that I could be so devoid of life. And there are no antidepressants that counteract its effects. Please, please consider checking on this. I never knew it could be so bad.

You might also want to be assessed for other health issues, especially autoimmune. FYI, thyroid issues cause one's hair to fall out, body tempts drop. I have Hashimotos Thyroiditis and the symptoms are so similar that it seems to confuse most doctors because they are myopic (oh, and perhaps a tad egotistical?), so you may have to get creative to find out what's going on with you, which is very difficult considering your exhaustion and lost time.

Yeah, I look fine and feel like I'm 100+ years. I've been working on getting my narcolepsy meds right for over a year and with all my other health variables, it's daunting. My memory is shot, I'm always sleepy and if I didn't have my husband and pets, I wouldn't even bother. (The rest of the family and most of my friends are pretty much gone from my life at this point since I don't have the energy to keep in touch. I'm very lucky for the few that understand and support me.) My doctors don't bother speaking to each other and get ruffled when I remind them (if they're really listening, that is). But I have hope and that keeps me going.

Please keep in touch, let us know how you're doing and I'm available if you'd like to have a private conversation online.

Kathy

9

If you WANT to work for the police department and think that's a better option for you, then I suggest you ask for an accommodation. An accommodation can be many things:

Leave without pay until you get your meds working well

Part time work

A different type of job

Teleworking some days

etc.

Do you have a union steward you can talk to? My friend is an expert in disability regs. Let me know if you'd like me to get you more information about your accommodation rights.

I do understand that retiring may be in YOUR best interest - I just hate to see people forced to retire when they don't want to and can continue to work if the disability accommodation regs are followed.

10

That's the "key" your best interest in dealing with narcolepsy.

The sad reality is that many are forced off of work, too sick to even file a complaint or ask for accommodations. When I asked for "accommodations" they told me "they couldn't even talk about it until I was ready to "come back to work"!!! The doctors didn't even know for another 6-8 months. I was way past the dates to file "disability discrimination" and the stress I was put under only made things worse... Those were very difficult days.

In the bigger picture, maybe it's really not best for you to go "back to work". From what you describe "clearly you are disabled". It's a hard reality to accept. Glad that you have a doctor who understands your "DNA type", that's pretty rare for a doctor.

It's never good for your health to work in a job where you are not respected...and treated well. You can contact ALLSUP at any point in the process for help. (That whole process is almost "a disease" in itself).

You can check out "light therapy" on the web. Another thing your doctor should check for is vitamin "D" levels. If they are low for your DNA type everything could be out of whack. I'm on a therapeutic dosage of "D"...related to another condition.

Take care, be brave, you will make it!

Ranger

PS: The light was called "Lightphoria 10,000LUX Energy Light" $69.67/free shipping/amazon. I'd buy another one in a heart beat, I really need the sun and it helps.



Virginia said:

If you WANT to work for the police department and think that's a better option for you, then I suggest you ask for an accommodation. An accommodation can be many things:

Leave without pay until you get your meds working well

Part time work

A different type of job

Teleworking some days

etc.

Do you have a union steward you can talk to? My friend is an expert in disability regs. Let me know if you'd like me to get you more information about your accommodation rights.

I do understand that retiring may be in YOUR best interest - I just hate to see people forced to retire when they don't want to and can continue to work if the disability accommodation regs are followed.

11

Hi NarcoSlayer, I am sorry so hear about your current mind state. I can relate to how you feel as far as being rejected. I am a single mom and my nine year old is very active. Problem is mom has to always take a nap. It sounds unreal to hear an actual person state that they pull over like I do. What a bummer to wake up and realize you missed a state exam that would help change your life. Then you are late getting your kid from daycare and she is the only one in the building. I tried to file for disability in the past. I lost the judge figured since I did factory work before that I didn't need it.Failing to realize that was before my condition worsened. Ugg what a drag I feel like I literally sleep my life away. I am currently on Nuvigil and are are having some Cataplectic episodes lord help my soul. I'm trying to take the meds and try to be normal but things seem to be getting worse. I'm so glad I found this site. I always wonder what life is like for others who suffer from this curse.Ï could say so much more but as usual I can not keep my eyes open plus it is quiet in here so you know what happens.zzzzzzzzzzzzzzzz