SleepyWalker

Never Disability For Narcolepsy?

30 posts in this topic

i created a website that has info on how to get it.  please go to facebook and join the group N. R. G.  and i 'll give u the link.  n. r. g. stands for narcolepsy resource group.

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I suffer from Narcolepsy without cataplexy and I am currently filing for disability. I have had very little success with N meds due to the fact that I also suffer from Bi-polar disorder. My bi-polar meds counter act my N meds and my N meds counter act my bi-polar meds. At my last doctor's appt. my Neurologist deemed me "completely and totally disabled"

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It doesn't seem to matter what a person has wrong with them, even if they are dying of cancer, they usually have to go through several appeals before they finally get it.  Having said that I want to tell you my story, because I got disability without even being turned down once. I am actually the only person that I know that wasn't turned down at least once and most people have to go through so many appeals that it seems to take 2 to 4 years before they finally get their disability.  

I worked for many years in spite of my narcolepsy and in spite of the fact that the side effects of all of the stimulant drugs that were out for narcolepsy at the time had horrible side effects and after the first 10 years I couldn't tolerate them at all.  I was given an antidepressant to take at night at some point when I desperately went to yet another doctor to see if there was something I could take. I was sometimes mistaken for a drug addict by strangers with my sleepy half closed eyes, when I was attempting to fight off my attacks of narcolepsy. Even with the night time antidepressant I was still pretty bad off and had to drink countless cups of coffee in order to at least look like I was awake in the afternoon, when in reality I was barely conscious and miserable, because I was so sleepy. Every now and then I went to the ladies room and took a short nap while sitting in the toilet stall. It was sheer torture, but I didn't want to think of myself as disabled so I would go back and forth between working and collecting unemployment. I hated working because it was no fun fighting sleep for at least half the work day.  All and all though I probably have a milder case of narcolepsy than many of the people here.  I have had narcolepsy for 57 years and I have only had less than 10 mild split second cataplexy attacks in all of those years and even though it is pure torture I can often fight off narcolepsy attacks for a long time before I fall asleep if I need to.  

 

Nonetheless, by the time I was in my early 40s I couldn't stand the strain of working and faking being awake in the afternoon and all of that coffee.  I was cracking up and it wasn't the first time.  I always tried to stay unemployed between jobs as long as I could in order to recover from the strain, but each time I would crack up quicker and take longer to recover. I was also a first time mother of an infant and I needed to keep myself together for my child's sake, so it was time for disability. I was already unemployed and had moved to a place where jobs weren't plentiful anyway.  We had moved for my husband's job. At first I applied strictly based on my narcolepsy. I didn't know much about how the process worked except that disability was hard to get and took a long time to go through. I got more papers back from Social Security asking a lot of questions about my disability and by sheer coincidence I also got access to some lawyers manuals about disability claims. I read all of them and then I went down to the Security Office and looked at their manuals in order to get more information.  The people that worked there were very nice and one of the men who worked there told me that I should put down any and all illnesses that I had, because even if none of them were severe enough to meet the listings that they add the points together from all of the illnesses and it might be enough to meet the listings when added together.  The funny thing is that for the most part I was a pretty healthy person, but I did have some severe problems caused by the stress and strain of coping with my narcolepsy, mountains of caffeine and work stress.  I cannot remember the details, but I went through all of the listings and put down every symptom of every illness that I had that matched something in the listings.  I definitely included my narcolepsy, because even though it isn't in the listings it interfered with my ability to function in many areas. For example I once called my daughter's pediatrician in a panic, because I had accidentally dosed off with my infant daughter beside me on the couch and she had gotten into my purse and opened a bottle of medication of mine. I counted the pills first, but I couldn't determine for sure if maybe one could have been missing or not. The doctor told me that particular med wasn't dangerous even to a little baby and that I should just watch her. He told me what to check for. She was and is fine. She is now a healthy young woman, who fortunately didn't inherit my narcolepsy.

 

My family doctor was a huge help with my disability claim and that helped. He had his nurse or physician's assistant spend at least an hour with me doing a complete medical history on my narcolepsy.  Much of it was too long ago to actually dig up medical records.  I also couldn't remember the name of every doctor I had been to from age 12 to maybe 44 when I was doing my disability claim, but thanks to this long interview it at least appeared somewhere in my medical records.  I was constantly getting papers from Social Security also asking for more and more information and I answered any and all questions to the best of my ability.  I also saw a couple of their doctors that they sent me to.  I worked very hard to get the my disability claim done as clearly and accurately as I possible.  I didn't lie or misrepresent anything, but I did make sure not to skip anything that might help my claim and here is the big thing.  None of us know of course who is reading these claims.  Whether they are overworked and in a hurry, or for whatever reason, they are not giving these papers their full attention, so I gave a lot of attention to my wording so that it would clearly describe the symptoms that I had that matched symptoms described in the listings.  Sometimes it may be obvious to anyone who is paying close attention that what you are describing is the same as what is in the listings, but you have to assume that maybe the person reading it is tired or overworked and might miss the connection between what you are telling them and their listings if you are not making it so clear that they couldn't miss the connection.

 

I guess I am kind of wordy, but maybe that worked in my favor when filing my disability claim.  Who knows.  So if you managed to wade through this, I hope that you may have learned something that will help you be successful with your disability claim.

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Doseaging is the key to successful tx of eds w/stimulants.  Discipline is the key to defeating their side effects.

 

If your MD won't Rx enough to let you hold your job, you are disabled.

 

You prolly better figure something out to get medicare at least or 'county' (for the indigent) healthcare will be all you have access to.  It's sub-optimal.

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