Narcolepsy

Join the Conversation on
Narcolepsy
6.5K people
0 stories
465 posts
About Narcolepsy
Explore Our Newsletters
What's New in Narcolepsy
All
Stories
Posts
Videos
Latest
Trending
Post

I’m new here

Hi, I am always looking for new ideas or suggestions for treatment for Narcolepsy, I have struggled to find the right treatment since I also have insomnia and restless leg syndrome. Since the first of the year my insurance company for prescriptions which is new again this year, has decided not to cover the medication I have been taking during the day to help with my daytime sleepiness. I have been taking for approximately 4+ years and works the best for me. It is so frustrating. I feel like I am starting all over again.

#Narcolepsy #Depression #Anxiety #Insomnia #Fibromyalgia #Migraine #RLS #GastroesophagealRefluxDisease

3 reactions 3 comments
Post

As I am

I want to say, I have been MIA for a while. Because I feel as though If I don’t stand for what I have then they won’t listen. I will not let them keep sweeping my auto immune disease under the rug. I don’t care if they don’t see it. It’s here and in full effect and in full swing RIGHT NOW!!! If I feel ok I will look like it . But if I can’t comb my hair and I got appointment well Mufasa is what you get! Everyone knows that I don’t like to be noticed but since I have tried all the fibromyalgia meds and it made me worse than when I was on nothing because I have chemical sensitivity and noise sensitivity and skin sensitivity and whatever else chronic fatigue chronic pain chronic & sensitivity Everything I say! Now I’m at the point that Life is to short to be mad or Angry Just get your medical card get your head high and go and if you can’t remember there always tomorrow and you can always make someone else smile even if you are having a bad day it does the heart good ! I laugh at myself all the time. I know who I and I love me and most of all I love people and no matter how much or how bad I hurt I always go out or when I do go out I make sure I say a kind word or say some encouraging words or help someone or somebody or smile or if I can sum up enough energy I would do a little dance for the little old ladies at my physical therapy session I been going to for almost a year. Just to crash when I get home but my little show make them have something to look forward to coming back.
#Fibromyalgia #Narcolepsy #ChronicFatigue #ChronicPain #Autoimmuneillness #nocure #YouCanLaughAtYou

6 reactions 3 comments
Post

Getting discouraged

I’m getting discouraged on leaving my narc husband again. I’m probably just gonna come back anyways. When I think about living without him it just doesn’t feel right or possible. I understand it doesn’t make sense and it isn’t logical. I understand I need to leave. But sometimes we have good times and he makes me live for those breadcrumbs that when I get them it’s hard to deny them. It really is like an addiction. I am addicted to that tiny little hit of oxytocin he gives me once in a blue moon when he pretends to care or bond with me.

I feel like such a fool. Most people come back and leave several times. I can’t do that. This has to be the only time. That’s a lot of pressure. It scares me the idea that I will come back and it’ll be much worse and he’ll hurt me. I am terrified that there are still parts of me that are still unlovable. I would say that most of the time I do love myself, but there are still parts of myself that are ugly. Things I do that I know he accepts or deals with that I don’t know if other people would put up with. He often tells me no one else would put up with me.

Like how I binge eat til I’m sick when I’m low on dopamine
or how sometimes I don’t bathe for days or brush my teeth or change my clothes when I’m exhausted or depressed
My bipolar I have other embarrassing disorders I don’t like talking about
My god awful OCD. I’m a germophobe and I have lots of arbitrary rules that him and myself have to abide by or else it’s very upsetting for me. And he mostly puts up with it I think more than I notice
I have narcolepsy and sometimes I’m so tired I can’t even stand or feed myself it’s actually pretty common I need help feeding myself. I feel like such a burden but there’s nothing I can do about that. He cooks for me a lot or gets me food
I have a lot of trauma, still some unhealed
I can be a very anxious hypochondriac

I’m scared of never been known or loved again. I know he doesn’t love me, but it’s all I’ve ever known we got together very young and it’s comfortable somewhat and familiar. I’m sure this feeling is fleeting. I think it’s in reaction to the fact I will be talking to lawyers this week.

#Abuse #PTSD #MentalHealth #Anxiety #ObsessiveCompulsiveDisorder #BipolarDepression

12 reactions 4 comments
Post

Recalculating

I recently saw a new neurologist, hoping she would find a connection between my neuropathy and my fatigue. Instead she thought the fatigue might be related to my sleep apnea, which I thought was fully treated by my CPAP machine. She put me on Provigil, a stimulant used for narcolepsy and sleep apnea. It seems to be helping my energy, but unfortunately doesn’t change the fact that I often don’t realize how much a particular activity is taking out of me until afterwards. I have worked hard to find the right balance between activity and rest. Now it has changed, and I am going to have to learn my new balance by trial and error. Recalculating!!!

(edited)
3 reactions 1 comment
Post

After living with primary immunodeficiency, osteoarthritis, narcolepsy, asthma, gi issues incl malnutrition, and more for many years, ive met my match

I have been hsving severe skin issues, worsening lung and breathing issues, sudden renal hypertension and general high blood pressure and loss of function in my hands, and even sudden unexplained cardiac issues for just over 5 years now. And it has been an awful experience for the most part where doctors refuse ti believe how bad thjngs are and either im causing lots of the thing i experience myself, or saying its a new psychiatric condition i developed, a nurse this past week who has known me for a number of years was once again havjng a very hard time getting an iv in so i could havd my ivig treatment it seemed like the skin on my arms has become very thick and tough and my veins themselves are no linger very good and tend to really just disappear. This is not the heard these same things. But this nurse went a step further snd connected the dots with a bunch of other symtoms that have started over the past 5-6 years and the worsening and resistance to treatment of my asthma and muscle and joint issues, and asked me if anyone has thought of or mentioned testing to determine if i might actually be having symptoms of systemic scleroderma. I hadnt ever really heard about this condition, but suddenly dojng research about it this week i feel pretty certain thar when and if i can get an md to seriously listen and consider this posdibility, im going to end uo having a confirmation if this diagnosis. The way i have been treated as thjngs have progressed has come close to really breakjng me, especially cimbined with the severity of discomfort pain and disabiity that have progressed pretty significantly over these last years. But i am known as a miraculous survivor and people think im a really strong person. And somehow i have managed to get through these really difficult experiences over these last years abd still be a generally happy, optimistic person who works hard to make a difference in this world but as i have resd more and more medical articles and had somehow come to terms that this probably my dagnosis the progression i am likely tibexperience (and up to this point the progression of symtoms matches what is described with this disorder almost to the finest details) i feel relief that there kosy likely a medical explsnation for ehat ive been experiencing, but i also fe my will to continue trying to fight and live my life as i have always managed to somehow continue or return to doing, is quickly evaporating. My life has been an amazing and wonderful one i am so grateful for, but the degree of difficulty i have experienced also been very extremr and im tired, so tired and so traumatized by the way i have bedn trearmted as the symptoms have appeared and progressed, that i dont feel like have whats needed this time to call upon to give me the strength and determination to live my life and somehow make this experience havd some positive meaning for me and in the way i am who i am in this world. I have even through medical crisis after crisis when there has been strong indication this was the final straw for my body, and after many years of struggling to handle a life with bipolar and very severe complex trauma from so many years of so many different really horrible ongoing traumatic experiences i have been able to rise stronger and more grounded, happier and more able to share my gifts ghrough each of these things, but this time, when i am so close to reaching the age if 55 when i was never thought to medically have a chance of survival even as a newborn, i have done all i have the strength to do in trrms of being resilient and fighting for what i have always felt so impirtant and my entire reason i exist, and its not that i want to die ir anything, but i literally sont feel i have what i need to possibly keep putting one foot in front of the other and being as present in each moment as possible and taking life moment by moment and all i can imagine is staying in my warm bed cuddling my very spevcial and sweet kitty and chatting with absolute soulmate if a best friend who lives thousands of miles from me and just not pushing function and have a life beyond thise three things from here forward. I cant see how i will ever be capsble of one foot after the other moving through this difficulty for however much longer i am blessed with this existence and fighting to continue. So please light a candle in the dark, say a whispered prayer and or send me all the loving kindness you can when you read this. Thanks
#Scleroderma

1 reaction
Post

School anxiety!!!!

I know with the middle of the school year those of us in school or uni may with anxiety disorders, and depression, and we nerodivergents are FEELING the school anxiety!! I thought I'd share some things that I bring with me to school that help me be less anxious!!! (These things help me but are not a cure-all!!!)

earplugs!! I always feel overwhelmed at school and earplugs have helped me so much! I love the loop earplugs because they're so discreet but they are pricey!! an extra sweatshirt I personally sometimes in the middle of the day decide I hate my outfit and need to change and without my trusty sweatshirt I often have panic attacks! mine is just a giant heather gray sweatshirt fidget. I use wire ring fidgets religiously and love them!! extra shorts and undergarments!! along with my sweatshirt having these on me helps my anxiety so much!! Deodorant If you're like me and have TONS of anxiety about smelling bad this is a must-have and, if you like it you can also pack perfume!! stick on heating pads!! This is my lifesaver as with my super painful cramps I often have to put almost four of these on!! be careful to read the instructions as you can accidentally burn yourself This is all I can think of!! Add more in the comments and have a wonderful day!!! love!!!! #Anxiety #Narcolepsy #School #Periods #ADHD #SPD #AuditoryProcessingDisorder #AutismSpectrumDisorder #MentalHealth

2 reactions
Post
See full photo

Migraine migraine go away

Battling with multiple chronic illnesses (IIH, narcolepsy, migraines), this hit hard.

8 reactions 2 comments
Post

Sleepy?

I am wondering if anyone on The Mighty, especially in this group, deals with #Narcolepsy or #Hypersomnia ? So tired... where are my spoons...

12 reactions 9 comments