6 replies to this topic

[julie123]

A little background, I was diagnosed with Narcolepsy in 2009 after about 4 years of struggling with exhaustion. I can “match” this exhaustion with a drastic change in my sleep/awake pattern when I was active duty in the US Navy and they were switching our 12 hour day/night shifts back and fourth every few days (2 shifts on nights, 1 day off, 2 shifts on days, 2 days off, 3 shifts on nights…).



Therefore, when I was discharged from the Navy, I applied for and was granted a service connected disability of Narcolepsy. However, I am dumbfounded about a portion of their “rating decision” that I will describe below. My hope is that you might be able to 1. Educate me regarding the relationship between Narcolepsy and Epilepsy, or 2. Assist me in “educating” the Veterans Administration Rating board that there is no such connection between the two and Narcolepsy should be rated independent of anything having to do with Epilepsy.



Here is the direct quote from their rating decision: “ …The examination showed a normal neurological exam. Your cranial nerves were intact. Reflexes were symmetrical in all four extremities. The examiner diagnosed narcolepsy. We have assigned a 10 percent disability evaluation based on continuous medication. An evaluation of 10 percent is assigned if there is a confirmed diagnosis of epilepsy with a history of seizures. A minimum evaluation of 10 percent is also assigned if continuous medication is necessary for the control of epilepsy. A higher evaluation of 20 percent is not warranted unless evidence demonstrates at least one major seizure in the last two years, or a least two minor seizures in the last six months”



They cited Title 38 of the Code of Federal regulations for the basis of this decision. So I did a little research. Here is the web page: http://www.warms.vba.va.gov/bookc.html If you go down to the section “Neurological Conditions and Convlusive Disorders” and click on the link to open 4.124a Schedule of Ratings - Neurological Conditions and Convulsive Disorders it opens a word document (which I have attached to this email for your convenience). Under the section “Miscellaneous Diseases” they have Narcolepsy listed and underneath it states, “Rate as for epilepsy, petit mal.” The very next page lists the section “The Epilepsies” and under Epilepsy, petit mal. the following information is listed:

Rate under the general rating formula for minor seizures.



Note (1): A major seizure is characterized by the generalized tonic-clonic convulsion with unconsciousness.

Note (2): A minor seizure consists of a brief interruption in consciousness or conscious control associated with staring or rhythmic blinking of the eyes or nodding of the head (“pure” petit mal), or sudden jerking movements of the arms, trunk, or head (myoclonic type) or sudden loss of postural control (akinetic type).

General Rating Formula for Major and Minor Epileptic Seizures:

Averaging at least 1 major seizure per month over the last year.................................... 100

Averaging at least 1 major seizure in 3 months over the last year;

or more than 10 minor seizures weekly............................................................................... 80

Averaging at least 1 major seizure in 4 months over the last year;

or 9-10 minor seizures per week............................................................................................ 60

At least 1 major seizure in the last 6 months or 2 in the last year;

or averaging at least 5 to 8 minor seizures weekly.......................................................... 40

At least 1 major seizure in the last 2 years; or at least 2 minor seizures

in the last 6 months...................................................................................................................... 20

A confirmed diagnosis of epilepsy with a history of seizures .............................................. 10



Note (1): When continuous medication is shown necessary for the control of epilepsy, the minimum evaluation will be 10 percent. This rating will not be combined with any other rating for epilepsy.



So, it appears they gave me my 10 percent rating because I am on continuous medication, although it’s for Narcolepsy and not Epilepsy.



I’m no medical professional, and am very new to this Narcolepsy diagnosis, and thought maybe someone might have more insight about this than me.



So my specific questions are this:

1. Do Narcolepsy and Epilepsy have anything to do with each other?

2. If they do not, can you think of any reason why the Veterans Administration rating board may have “grouped” them together like this?

3. Do you have any other information you could provide me with that would assist my appeal of their decision? I disagree with their 10 percent rating and that that Narcolepsy has a much greater impact on my daily life and specifically my employability, than they realize. I’m just afraid that in my appeal, they are going to get stuck on the fact that I am not having epileptic seizures and therefore do not meet their criteria of a higher rating. I want to make sure I’ve crossed all my t’s and dotted all my i’s before I head into this.



Thank you kindly for your time!

[matt parker]

i just filed for disability for narcolepsy and I'm relying on cataplexy to be considered at least a mild seizure. I have cateplexy normally several times per day, and don't really see how anyone could say it isn't a seizure. Seems like if you can't stop having cataplexy attacks throughout the day that should be enough put you into a higher disability level right?

[narcats]

son has part to full cats no muscle tone-- never had any type of seizures/movement..one thing is to get past records and look them over- you be suprised whats missing -may find things that were never discussed-things that were discused and never written down- or sometimg toldly weird -WHAT the DR wrote saying you have attude problems--records may read like a story once apond a time they lived happly ever after--problem is wheres the middle--you'll have more problems with ssi saying theirs nothing wrong -denied if the Drs forgot the important stuff--or denied anyway-get all the copies you can- get labs-drugs/ achole tests- blood work- meds- tests - amb reports if they were called and /or you were tranported because of the n and or n/c problems- same with the police deparment -stores or what ever where ever - always report to your Dr all the lumps/ bumps/ bruses/ cuts (medals) and that you hit your head every time you see him/her whether they are showing or not---- school records if you were also having these problem then-other Drs and Shrinks and all their records and make your own extra copies(keeps cost down) keep the the first copies--may want to keep them in a vinder to keep neat and preaty-only give what you think is nessary to others--if you have a laywer or an advcate for ssi this way it saves time if you have copies---get a high lighter sit back and you be suprise what you read--ramble ramble-- their your records so if they give you problems its BS-records are kept 7 or 10 years ? -you can go though medical records without the Drs knowing---I think is best that way---it cost some or you can ask the Drs for copies usly at no cost--but they are not to happy about that and may play the no can do game-we have an advcate this time around - they only get 25% of your first check when you win- how ever long it takes -if you have to go before a judge they kind of hold your hand telling you what you need to do----

[Linna]

A little background, I was diagnosed with Narcolepsy in 2009 after about 4 years of struggling with exhaustion. I can “match” this exhaustion with a drastic change in my sleep/awake pattern when I was active duty in the US Navy and they were switching our 12 hour day/night shifts back and fourth every few days (2 shifts on nights, 1 day off, 2 shifts on days, 2 days off, 3 shifts on nights…).



Therefore, when I was discharged from the Navy, I applied for and was granted a service connected disability of Narcolepsy. However, I am dumbfounded about a portion of their “rating decision” that I will describe below. My hope is that you might be able to 1. Educate me regarding the relationship between Narcolepsy and Epilepsy, or 2. Assist me in “educating” the Veterans Administration Rating board that there is no such connection between the two and Narcolepsy should be rated independent of anything having to do with Epilepsy.



Here is the direct quote from their rating decision: “ …The examination showed a normal neurological exam. Your cranial nerves were intact. Reflexes were symmetrical in all four extremities. The examiner diagnosed narcolepsy. We have assigned a 10 percent disability evaluation based on continuous medication. An evaluation of 10 percent is assigned if there is a confirmed diagnosis of epilepsy with a history of seizures. A minimum evaluation of 10 percent is also assigned if continuous medication is necessary for the control of epilepsy. A higher evaluation of 20 percent is not warranted unless evidence demonstrates at least one major seizure in the last two years, or a least two minor seizures in the last six months”



They cited Title 38 of the Code of Federal regulations for the basis of this decision. So I did a little research. Here is the web page: http://www.warms.vba.va.gov/bookc.html If you go down to the section “Neurological Conditions and Convlusive Disorders” and click on the link to open 4.124a Schedule of Ratings - Neurological Conditions and Convulsive Disorders it opens a word document (which I have attached to this email for your convenience). Under the section “Miscellaneous Diseases” they have Narcolepsy listed and underneath it states, “Rate as for epilepsy, petit mal.” The very next page lists the section “The Epilepsies” and under Epilepsy, petit mal. the following information is listed:

Rate under the general rating formula for minor seizures.



Note (1): A major seizure is characterized by the generalized tonic-clonic convulsion with unconsciousness.

Note (2): A minor seizure consists of a brief interruption in consciousness or conscious control associated with staring or rhythmic blinking of the eyes or nodding of the head (“pure” petit mal), or sudden jerking movements of the arms, trunk, or head (myoclonic type) or sudden loss of postural control (akinetic type).

General Rating Formula for Major and Minor Epileptic Seizures:

Averaging at least 1 major seizure per month over the last year.................................... 100

Averaging at least 1 major seizure in 3 months over the last year;

or more than 10 minor seizures weekly............................................................................... 80

Averaging at least 1 major seizure in 4 months over the last year;

or 9-10 minor seizures per week............................................................................................ 60

At least 1 major seizure in the last 6 months or 2 in the last year;

or averaging at least 5 to 8 minor seizures weekly.......................................................... 40

At least 1 major seizure in the last 2 years; or at least 2 minor seizures

in the last 6 months...................................................................................................................... 20

A confirmed diagnosis of epilepsy with a history of seizures .............................................. 10



Note (1): When continuous medication is shown necessary for the control of epilepsy, the minimum evaluation will be 10 percent. This rating will not be combined with any other rating for epilepsy.



So, it appears they gave me my 10 percent rating because I am on continuous medication, although it’s for Narcolepsy and not Epilepsy.



I’m no medical professional, and am very new to this Narcolepsy diagnosis, and thought maybe someone might have more insight about this than me.



So my specific questions are this:

1. Do Narcolepsy and Epilepsy have anything to do with each other?

2. If they do not, can you think of any reason why the Veterans Administration rating board may have “grouped” them together like this?

3. Do you have any other information you could provide me with that would assist my appeal of their decision? I disagree with their 10 percent rating and that that Narcolepsy has a much greater impact on my daily life and specifically my employability, than they realize. I’m just afraid that in my appeal, they are going to get stuck on the fact that I am not having epileptic seizures and therefore do not meet their criteria of a higher rating. I want to make sure I’ve crossed all my t’s and dotted all my i’s before I head into this.



Thank you kindly for your time!

I have been told by my nurologist that they are not interelated and that they should not be confused with one antoher. However, he did arrange for me to have a test to rule out epilepsy. So sometimes I wonder if there is a relation. Also, I have had N for a long time but just recently I have been having tremors. Again, my family physician said that they were not related. I wish an expert would post something on this subject. From what I have read the two have nothing to do with each other.
GOOD LUCK to you!

[ibzom]

I am currently going through a medical evaluation board for N and OSA. I cant find much research on the way the VA relates N and epilepsy...
I was only diagnosed with N last year but i have been struggling with excessive daytime sleepiness for the better part of my 9 year career. I will ask the VA doctor more about this and post more information if i get it.
I am worried because i dont have any cataplexy attacks. So i may get 10% for continous medication but with no cataplexy attacks it may not be likely...

I was wondering there have been lobbying to correct the VAs N and epilepsy comparison? I read a document about a diabetes community asking about a similar problem.

Good luck to you all and when i get more infomation i will try to post it...

MV

[ildrungo23]

Wow it has been a very long time since i have been on this site. I almost went through the exact same thing. I was diagnosed with narcolepsy only a year in the US Navy and 6 months of trouble with daytime sleepiness and cataplexy attacks. Long story short, After an "Involuntary Discharge " under honorable conditions i got my 20% Disability rating from the VA and just recently I was denied SSI benefits for the Narcolepsy with cataplexy.

I agree that the VA needs to re-evaluate the comparison between cataplexy and epilepsy in their rating decisions. And focus more on the hardship of dealing with the other serious symptoms of narcolepsy. EDS=limited transportation, Paralysis=Inability to get up some mornings, and etc. However with proper treatment it is not possible to get a higher rating, because they are led to believe that you are able to live a normal sustainable life because your treatment is successful. Like SSI who see a person with proper treatment of narcolepsy as a person who is not disabled, because they are capable of working.

In my case I have ran through several different medications, all of which barely worked until I got put on Adderall and was successful in getting a job so clearly they saw me as a capable worker. I will be taking my first dose of Xyrem this week, a drug that all 4 of the neurologist and sleep specialist recommended due to the seriousness of my case of narcolepsy.

[MrZZZZZ]

A little background, I was diagnosed with Narcolepsy in 2009 after about 4 years of struggling with exhaustion. I can “match” this exhaustion with a drastic change in my sleep/awake pattern when I was active duty in the US Navy and they were switching our 12 hour day/night shifts back and fourth every few days (2 shifts on nights, 1 day off, 2 shifts on days, 2 days off, 3 shifts on nights…).



Therefore, when I was discharged from the Navy, I applied for and was granted a service connected disability of Narcolepsy. However, I am dumbfounded about a portion of their “rating decision” that I will describe below. My hope is that you might be able to 1. Educate me regarding the relationship between Narcolepsy and Epilepsy, or 2. Assist me in “educating” the Veterans Administration Rating board that there is no such connection between the two and Narcolepsy should be rated independent of anything having to do with Epilepsy.



Here is the direct quote from their rating decision: “ …The examination showed a normal neurological exam. Your cranial nerves were intact. Reflexes were symmetrical in all four extremities. The examiner diagnosed narcolepsy. We have assigned a 10 percent disability evaluation based on continuous medication. An evaluation of 10 percent is assigned if there is a confirmed diagnosis of epilepsy with a history of seizures. A minimum evaluation of 10 percent is also assigned if continuous medication is necessary for the control of epilepsy. A higher evaluation of 20 percent is not warranted unless evidence demonstrates at least one major seizure in the last two years, or a least two minor seizures in the last six months”



They cited Title 38 of the Code of Federal regulations for the basis of this decision. So I did a little research. Here is the web page: http://www.warms.vba.va.gov/bookc.html If you go down to the section “Neurological Conditions and Convlusive Disorders” and click on the link to open 4.124a Schedule of Ratings - Neurological Conditions and Convulsive Disorders it opens a word document (which I have attached to this email for your convenience). Under the section “Miscellaneous Diseases” they have Narcolepsy listed and underneath it states, “Rate as for epilepsy, petit mal.” The very next page lists the section “The Epilepsies” and under Epilepsy, petit mal. the following information is listed:

Rate under the general rating formula for minor seizures.



Note (1): A major seizure is characterized by the generalized tonic-clonic convulsion with unconsciousness.

Note (2): A minor seizure consists of a brief interruption in consciousness or conscious control associated with staring or rhythmic blinking of the eyes or nodding of the head (“pure” petit mal), or sudden jerking movements of the arms, trunk, or head (myoclonic type) or sudden loss of postural control (akinetic type).

General Rating Formula for Major and Minor Epileptic Seizures:

Averaging at least 1 major seizure per month over the last year.................................... 100

Averaging at least 1 major seizure in 3 months over the last year;

or more than 10 minor seizures weekly............................................................................... 80

Averaging at least 1 major seizure in 4 months over the last year;

or 9-10 minor seizures per week............................................................................................ 60

At least 1 major seizure in the last 6 months or 2 in the last year;

or averaging at least 5 to 8 minor seizures weekly.......................................................... 40

At least 1 major seizure in the last 2 years; or at least 2 minor seizures

in the last 6 months...................................................................................................................... 20

A confirmed diagnosis of epilepsy with a history of seizures .............................................. 10



Note (1): When continuous medication is shown necessary for the control of epilepsy, the minimum evaluation will be 10 percent. This rating will not be combined with any other rating for epilepsy.



So, it appears they gave me my 10 percent rating because I am on continuous medication, although it’s for Narcolepsy and not Epilepsy.



I’m no medical professional, and am very new to this Narcolepsy diagnosis, and thought maybe someone might have more insight about this than me.



So my specific questions are this:

1. Do Narcolepsy and Epilepsy have anything to do with each other?

2. If they do not, can you think of any reason why the Veterans Administration rating board may have “grouped” them together like this?

3. Do you have any other information you could provide me with that would assist my appeal of their decision? I disagree with their 10 percent rating and that that Narcolepsy has a much greater impact on my daily life and specifically my employability, than they realize. I’m just afraid that in my appeal, they are going to get stuck on the fact that I am not having epileptic seizures and therefore do not meet their criteria of a higher rating. I want to make sure I’ve crossed all my t’s and dotted all my i’s before I head into this.



Thank you kindly for your time!

Hi,

I too was diagnosed with N during active duty and was service connected alloting only 10%. After being diagnosed by a civ Neuro. I was told to do a sleep study again this time in a military hospital, The doctor came in the next morning and asked me if I wanted to stay in the service, I was told I could't so I told him NO. well he said, "your fine go home". Seven months later (and no treatment) I was discharged. Only to find out ten years later, that I do in fact have N. by a second civ Neuro. This entire time (10yrs) I could have been collecting and been receiving treatment from the VA. To say the least I feel very cheated. Well the Neuro I talked to (both of them) says that Epi, and N are NOT related they even wrote that in my Drs. statement, but he added that as far as quality of living N is as bad if not worse than Epi.

The CFR's are old and are not updated using modern medical knowledge we now possess of N. it would stand to reason that the Gov. should update them, but that is a battle in of its self. I hired a lawyer, the lawyer from "A Few Good Men" Marcari, Russotto, Spencer and Balaban, P.C. Try getting a hold of them and let them know what is going on they will review your case for free and let you know how they can help. Everything can be done by email and/or fax. Best of luck to you..