8 replies to this topic

[digdonn]

Hello,
That sounds really frustrating. Do you know why Blue Cross is not approving your use of provigil? Have you discussed this with your doctor? Perhaps your doctor would be willing to help you appeal the Blue Cross decision, or your doctor might consider letting you try an alternative drug that would be approved by Blue Cross. Don't give up. Also, are there any non-drug methods that you could use to help with the sleepiness? Does exercise, splashing cold water on your face, or napping help?

Not sleeping well for two years can make any one feel worn out enough to question their sanity. Since sleep medications have not helped you, have you consider any non-drug options? If you haven't already done so, you may want to consider trying cognitive behavioral treatments to see if they can help improve your sleep quality at night. These treatments are provided by psychologists, and sometimes by nurses and other medical staff.

Nancy

[Narcolepsy Network]

Denying coverage for a particular medication is just one of the ways health insurance companies control cost. Many times the denial can be successfully challenged through internal and external appeals. Don't take no for an answer until you have exhausted the appeals process explained at http://www.kff.org/c...rguide/7350.cfm. Good luck!

Narcolepsy Network

[Ecograd]

Sounds like we have had similar lives - for the last two years, at least. In addition to suspected narcolepsy, I was diagnosed with Delayed Sleep Phase Disorder last year. Basically, the best time for me to sleep is 3am to 11am. Do you notice yourself getting better sleep after a certain hour in the night?

Also, after several months without restorative sleep my doctor prescribed Amitripthyline, which helped quite a bit. Six months after that I tried Amb CR, which made a huge difference in terms of amount of sleep (and therefore my quality of life).

[greatbig47]

curieforever,

It's important you do your best to take care of yourself, medicated or not. DO exhaust ever possibility of getting good medication! Don't let your condition think for a moment it controls you....

* YOUR NOT INSANE!
* Your condition thinks it can take over, You'll prove it wrong
* Find some non-medical approaches. Meditation was a bunch of hooey until I learned how. Even just taking some quiet time out to purposely rest your eyes would be very helpful.
* Maybe work with your doctor on finding a medication that your insurance WILL help you out with.
* know you have friends here that can relate to your situation
* take careful note of how you conquer your situation. It's a rare condition, and someone from the future will need to know how you did it.

-Stu

[judycasper]

Hello,

I should probably be posting this under the "treatment" or "living with narcolepsy" categories, but I really like what you (digdonn, Ecograd, and greatbig47) have written to curieforever and so I'm continuing with this thread in the hopes that you all (and others) can suggest some things and answer a few questions I have.

--I was diagnosed with N in the fall of 2006 (sleep tests, long-time symptoms) but am very lucky in that I only have EDS and not cataplexy, sleep paralysis or hallucinations. However, from reading recent posts I realize I have idiopathic hypersomnia tendencies with my N. It takes me FOREVER to wake up in the morning and when I sleep during the day it is for at least 1 1/2 hours, sometimes 3 hours, and I usually wake up just as sleepy, but also cranky! Until I read about idiopathic hypersomnia hearing people talk about refreshing 20 minute naps was always very puzzling to me because it is not something I've experiencd. Anyhoo - my question is if doctors have any additional treatments, or recommend anything different, for people with narcolepsy who also have idiopathic hypersomnia tendencies -- i.e. major trouble waking up in the morning? (I have recently started to use light therapy when I'm trying to wake up.)

--Intgegrative/Alternative Medicine Questions: I plan to take some time off work soon under FMLA (hopefully two or three weeks) to try to figure out how to treat my narcolepsy besides mainly taking meds. I'm basically trying to have time to study-up on this N beast so I can lead a productive life. During the 2-3 weeks I want to start to exercise again, see a nutritionist for any vitamin/mineral deficiencies and to learn more about gluten-free diets, work on sleep hygiene, start yoga again, try meditation, perhaps try accupunture, massage therapy...

I do believe that my work is going to be okay with this (I've already started the FMLA process) and my neurologist is fine with it too - I can tell that he is not a big believer in alternative medicine but he knows that I'm at the end of my rope and that I have to try some of these things or 1.) I will lose my mind 2.) I will lose my job along with my mind. And I need to improve my performance at work ASAP or I will lose my job! Luckily (again), I was able to get a few ADA accommodations approved this past fall.

--Questions: I have an appt. with my neurologist this afternoon to go over meds but he may ask me for my suggestions on what to put on the FMLA form under why I need this leave, even though he agrees I need to try some new things. My work returned the form to him for more explanation in this area. I know why I need to take it - so I can try to figure out a way to live my life without N ruling every minute of every day and night! And its very hard to figure this out and start new life-long behaviors while I'm trying to work when even just doing one load of laundry during an entire weekend is a big accomplishment -- I'm too tired to do/try anything else!

I really do realize that taking FMLA time (and using sick leave for it) to try to accomplish some of this is a luxury that many, many people with N don't have. And I feel somewhat guilty for taking the time off, but if I am legally able to do it, and my work and doctors agree with this, I'm going to do it. (And hopefully anything I learn can help others with N!!) So, with that disclaimer, do any of you have suggestions for how my doctor and I can express why I should be allowed to take time off of work on the FMLA form in a way that a person without narcolepsy, or much of an understanding of narcolepsy (i.e. HR), will understand?

Also, any ideas for what I should explore in addition to lots of nutrition research, exercise, sleep hygiene, yoga, meditation, massage, getting back in touch with my religous spirituality....?

Sorry for the long message. Thanks in advance for any suggestions!!

[merriejean]

You cannot know how happy I am to have found this site. I've been diagnosed with Idiopathic Hypersomnia, although my psychiatrist now believe I may have narcolepsy, although I really only have EDS... isn't that enough, truthfully! I have fallen asleep in doctor's offices, at my desk at school (I'm a middle school teacher) and various other places. The last time I was at the sleep doctor's for a visit, I fell asleep in the waiting room. What are they thinking... playing soothing music and keeping the room temp so comfy... LOL! I told my doctor they should play some spicy music and down down the thermostat if they want their patients to stay awake.

Anyhow... I have some thoughts on some previous posts. There was someone asking about IH and Provigil. I also have Blue Cross, and they will pay for Provigil. After the pharmacist told me they wouldn't pay, I called Blue Cross and they said all I had to do was have my doctor contact them and explain why I needed this med, and they will authorize payment then. As you can tell, I'm just starting on Provigil. I thought initially it was refused because my diagnosis is IH, and not N, although that turned out not to be the case. Call Blue Cross and ask them what you need to do to get Provigil paid for!

My question for everyone is work-related. I continue to teach full-time, although I doubt I can push through much longer. I want to know what you would advise I tell my principal and/or superintendant about my condition. I really can't nap at work, other than lunch time. I do lay my head on my desk then. I need to use my free planning period to grade papers and plan lessons.

I am married with 3 young children and have almost no contact with them. I come home from work and sleep for hours. I am sleepy ALL THE TIME, with the occasional extreme sleepy episodes I talked about earlier. Without my income, we can't afford to keep our home. I am looking into disability leave or retirement. Does anyone have advise on that?!

Sorry for the lengthy post, but I'm SO RELIEVED to have ANYONE who can relate to what I'm going through. Thanks!

"A nap is only nice when it's a luxury, not a necessity."

[merriejean]

You cannot know how happy I am to have found this site. I've been diagnosed with Idiopathic Hypersomnia, although my psychiatrist now believe I may have narcolepsy, although I really only have EDS... isn't that enough, truthfully! I have fallen asleep in doctor's offices, at my desk at school (I'm a middle school teacher) and various other places. The last time I was at the sleep doctor's for a visit, I fell asleep in the waiting room. What are they thinking... playing soothing music and keeping the room temp so comfy... LOL! I told my doctor they should play some spicy music and down down the thermostat if they want their patients to stay awake.

Anyhow... I have some thoughts on some previous posts. There was someone asking about IH and Provigil. I also have Blue Cross, and they will pay for Provigil. After the pharmacist told me they wouldn't pay, I called Blue Cross and they said all I had to do was have my doctor contact them and explain why I needed this med, and they will authorize payment then. As you can tell, I'm just starting on Provigil. I thought initially it was refused because my diagnosis is IH, and not N, although that turned out not to be the case. Call Blue Cross and ask them what you need to do to get Provigil paid for!

My question for everyone is work-related. I continue to teach full-time, although I doubt I can push through much longer. I want to know what you would advise I tell my principal and/or superintendant about my condition. I really can't nap at work, other than lunch time. I do lay my head on my desk then. I need to use my free planning period to grade papers and plan lessons.

I am married with 3 young children and have almost no contact with them. I come home from work and sleep for hours. I am sleepy ALL THE TIME, with the occasional extreme sleepy episodes I talked about earlier. Without my income, we can't afford to keep our home. I am looking into disability leave or retirement. Does anyone have advise on that?!

Sorry for the lengthy post, but I'm SO RELIEVED to have ANYONE who can relate to what I'm going through. Thanks!

"A nap is only nice when it's a luxury, not a necessity."

[Lovemyhusband]

Welcome to the site, it's nice to have you join us. I was also extremely happy when I found the site! There is another thread on disability here but its slow moving. You might want to put a message there as well. From what I understand it is a lengthy process to get disability but not impossible.

My husband is the one in our family that has N. He can totaly relate to not having much time with the kids. Don't put to much pressure on yourself about that since I'm sure what time you do get is quality time.

your right about calling the health insurance company about ANY drug the pharmacy tells you is not covered. Although any good pharmacy would have shared that info and even called the insurance company for you. In my previous life (before becoming a stay at home mom last year) I worked in a pharmacy and spent a lot of my time getting insurance companies to pay for drugs they originally say are not necessary.