Controlled Medications and Life Expectancy
I’m almost 44 and living my entire life with Severe Narcolepsy with Cataplexy has brought me to this question. What as a person with narcolepsy value more? Quality of life or quantity of life? I ask this. To others because I get a very staunch reaction from people across the board.
I personally am a huge proponent to Quality over Quantity and here’s why. For the last 24 years, every month is a crap shoot trying to obtain my narcolepsy medications. I have had multiple sleep and daytime studies. Without my controlled medications (Vyvanse, Adderall XR and Nuvigil) I will sleep 20 out of 24 hours and it takes only 2.4 seconds to fall into deep REM sleep. With the Opioid Epidemic, this made everyone else in the United States, who must take controlled medications at risk. The risk to me now, is finding and keeping a doctor that will prescribe monthly maintenance controlled prescription medications. I have doctors who drop me as a patient because they feel that my condition is too severe or they don’t want to be on the hook for writing all my prescriptions. Then I have doctors who want to recreate the wheel, make me go through all the tests over again to justify medications. Mind you I have a 6” binder with 24 years of medical documentation. I’ve also been approved by Social Security Disability, for full disability since 2015. (First time applying, I was approved).
Then finding a pharmacy. First hurdle at the pharmacy is do the have stock of these medications? Second hurdle at the pharmacy is will my insurance cover the medications? Third hurdle would be, am I within the time frame to fill the medications and or hopefully there are no errors on the electronically transmitted prescription. Fourth hurdle, but most importantly, will the pharmacist actually fill the prescribed medications. I can not tell you how many pharmacists have left me in tears because they don’t want the liability of filling my medications.
After all that, going home empty handed and wondering how am I going to take care of my family and my personal needs with no medications is daunting and down right depressing. I didn’t ask for this condition nor do I love taking multiple medications everyday to be able to function in the most basic ways. So when I think about quality of life at that point, it feels and is nonexistent. I ask myself what happens when I get older and fearing about how I can imagine this if I’m absolutely alone.
So I choose quality over quantity. I would rather have 25 quality years with medications, living a full life, the 40 more years sleeping in a nursing home.
Oh my Lord, is as if you took all my thoughts right out of my head and I never seen anyone with the same struggles that I have because of no one believing I had narcolepsy or not believing in narcolepsy both family on both sides and my husband left I was on the streets for 13 years my husband can't tell me it was on my head so I left him in that case I had a two-year-old who I adore and wasn't able to be his mom four years later he got remarried I missed out on everything the growing up going to school everything being a mother I find myself angry and I also too wonder if I'm going to be in old folks home by the time I'm 60 I'm not taking medicine anymore because like you said the doctors don't want to fuss with the red tape of the kind of medicine we need to be able to be productive and they just tell me what I think I want to hear and pull me along until I end up going to another doctor and they've all said pretty much that there's no money in it because I'm going to have too much too severe condition I have two of The prominent jeans and usually you only have one it's nice to know that it's not all in my head I just wish I could get my family to realize that instead of knocking me belittling me embarrassing me and they're embarrassed of me the act like I'm burden I hate it every day after that we got to get grandkids he doesn't even want to tell him about the narcolepsy and as far as participating with the never has brought him over my house once 10 and one is six never riding over my house I see him once a month at dinner and that's it and I miss out on all their functions also and I'm never invited to any kind of social functions because they don't want to have to worry about it but I need to go take a nap or need to leave because I'm tired I didn't ask for I love the condition and I'm tired to tell them my responding and how when I've missed everything, they just tell me it was my choice my choice. I hope things look better for you I've accepted my mind will never get better I just have to deal with it in my own way.
Unless you are seeing a sleep specialist physician you will continue to have problems with medication. The average doctor is not equiped to deal with narolespy and is probably not even familiar with cataplexy. The first nerologist, who confirmed by diagnosis of narolespy, knew of the condition of cataplexy, but was not convinced it actually existed. She was, however convinced when I had a full blown 20 minute attack in her office and was then nery responsive.
My narcolesy is 90% controlled with provigil and scheduled short naps. The cataplexy remained out of controll about 50% of the time until 10 months ago. I had been taking time release Venlafaxine for 16 years. Several months ago the time release dose was not available so the pharmacy substituted regular venlafaxine 2 tabs 3 times a day. I am now 99% attack free. With no other changes in my routine I can only account the dramatic change to the level of consistancy of venlafaxine in my body.
I now drive, shop alone even babysit my grandchildren. I am and can be a normal person again.How wonderful that you found a treatment plan that allows you to live so fully,
. Thanks for sharing what helps. Best wishes! - Lori (Team Member)
Hope you get the medicine you need
. Like Lori said, I agree with your statements to take meds and dealing with the side effects since it will improve your life. Somehow your story inspires me, it is really okay to take meds! Thank you for sharing your story. Hi
. I have a feeling many here will agree with you. I wish you did not have to make a choice. It is so unfair that it takes this much effort just to get the medications you need. It shouldn't be this hard. Have you ever considered participating in clinical trials? If there is something in the pipeline that can provide more permanent relief, you would be the first to get it. Please know we are here for you whenever you need support or a safe place to vent. Thinking of you and sending lots of gentle hugs your way. - Lori (Team Member)
