15 Year Navy Active Duty Officer Diagnosed with Myoclonic Epilepsy Looking for information

Fallenoneusn77

PEB Forum Regular Member
Registered Member
Thank you in advance for any help you may be able to provide.

Background:
I am a 15 year active duty officer with 10 years enlisted experience and 5 years commissioned. I am stationed on a submarine and we were on deployment in January when I had a major seizure resulting in me being medevaced off the boat. I was examined, and released with no residual effects. I declined medication, was evaluated by the Neurologist, and placed on Limited Duty. I was TAD when I relapsed at home 5 weeks later(a second major seizure on the 3rd of March), I am now on medication and during my follow up my neurologist stated she would recommend me Unfit with PEB to follow my myocolonic epilepsy diagnosis once my LIMDU period was up. There is no smoking gun with my condition, the medication seems to help but I have only been on it for 3 weeks. I have residual eye twitching from time to time and my balance and coordination is not what it once was.

I have done some research and was referred to this forum by a friend who is going through something similar however he is further along in the process.

I have looked at the ratings and have a few questions:
1. If I am on medication does the seizure timeline still apply or do they default to stable with medication?
2. Do other conditions such as Sleep Apnea or Tinnitus go into the rating by DoD? or are they specific to VA findings?
3. If There is no precedent of the Navy allowing personnel to stay with my condition, what, if any, chance do I have of convincing the board to let me stay?
4. The literal Million dollar question is what is the chance of me getting retired vice separated? That is the question that keeps me up at night.

I am only beginning the process so any help is appreciated.
I don't want to leave on these terms and do truly enjoy what I do, but if I have to go I would hope my family and I get taken care of.

Thanks again,
Jason
 

gsfowler

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PEB Forum Veteran
1. If I am on medication does the seizure timeline still apply or do they default to stable with medication?

I may be incorrect on this, but as far as I know, you must be seizure free for two years without medication to be eligible for retention.

2. Do other conditions such as Sleep Apnea or Tinnitus go into the rating by DoD? or are they specific to VA findings?

Sleep apnea and tinnitus are rarely unfitting. They typically are rated by the VA.

3. If There is no precedent of the Navy allowing personnel to stay with my condition, what, if any, chance do I have of convincing the board to let me stay?

There are too many factors that come into play, the Navy will make a determination based upon what they feel is the best for you (and them too of course). The only guarantee is that if they find you unfit, and you do not appeal, you will be discharged or retired.

4. The literal Million dollar question is what is the chance of me getting retired vice separated? That is the question that keeps me up at night.

It will come down to the percentages that are assigned to your unfitting conditions, 30% or greater = medical retirement. 0, 10 or 20% and you are looking at severance.


Here is the 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.

Note (2): In the presence of major and minor seizures, rate the predominating type.

Note (3): There will be no distinction between diurnal and nocturnal major seizures.
 

slayhert

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PEB Forum Veteran
Registered Member
I too have seizures (partial complex) and there are some special allowances for LIMDU and seizure activity. You can be active duty with epilepsy as long your seizures are under control. The ManMed has some provisions in it for med controlled epilepsy.
One of the allowances for epilepsy is you can spend a year on LIMDU while trying medications and dosages. This is up to your neurologist, but is looked at by the MEB for LIMDU.
The eye twitching and balance are side effects from the medication, and can go away. I had major balance issues when I first started mine, and at each dose change but I have gotten used to it. Also every med effects everyone differently, so a med change might not hit you as hard.

What did they prescribe you?

If you do go to a PEB, the DoD only rates the conditions that are unfitting for service. I too have sleep apnea, as well as a long list of other problems, but the DoD will determine which one I can not serve with and only consider that for the rating, the VA however will rate everything for compensation.

And as @gsfowler linked above, your rating is really based on how many and the type of seizures you have in a given time frame.
Just out of curiosity why did they diagnose you with Myoclonic epilepsy? I only ask because that type is generally characterized by a sudden jerk of a muscle group for just a sec or so. If they/you are saying they are "major" it sounds more like tonic clonic to me. ( I will admit I am not a Dr though.)

Lastly there is a syndrome that can start with myoclonic seizures and progress into tonic clonic (grand mal) seizures. Is this something they have looked into?
 

Fallenoneusn77

PEB Forum Regular Member
Registered Member
I am not sure with the diagnosis as the neurologist is waiting to see if I respond to the meds. The seizures were categorized as tonic clonic in my med record and I did see an entry about myocolonic as well. I'll have to do some further digging there. As for the eye twitching it was far more prevalent before I was put on meds. I've had two neurology appointments one initial and one right after my second seizure so I feel kind of blind. Thank you and I'll get back with more info.
 

slayhert

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PEB Forum Veteran
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That makes a little more sense. I am guessing the eye twitching is what they are classifying as myoclonic, and the major seizures you had were tonic clonic. Do you remember the major seizures? AKA were you awake, and know what was happening while it was happening? That will being telling to the type of seizure also.
 

Fallenoneusn77

PEB Forum Regular Member
Registered Member
No, both of them occurred while I was sleeping. The first one was documented as 8-9 minutes in length, bloody nose, shaking, groaning, incontenence. The second was 1-2 minutes, groaning, shaking, and spasming. I was confused and incoherent for about 30 minutes afterwards. The first time I woke up and asked the Corpsman why I was in his office and he told me what happened. The second time I came to on the gurney while the EMT's were putting me into the ambulance at my house. I don't remember either episode.
 

Fallenoneusn77

PEB Forum Regular Member
Registered Member
I also had busted blood vessels in my eyes, bruising, and scrapes on my body and I was sore for what seemed like forever. I was overcome with a general feeling of weakness too.
 

slayhert

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PEB Forum Veteran
Registered Member
It sounds like you are having tonic clonic seizures. I would make sure you have anyone that has witnessed your events give you and your Doc a detailed description of whats going on. Weakness is normal after most types, and the soreness, scraps etc can be from convulsions or falls. Seizures lasting more than a couple minutes mean you are going into status epilepticus. I am not sure of your current living situations, but until you are sure the meds are working I would make sure you are not alone.

Just make sure you are asking lots of questions about your treatment and what they think is going on. Don't let them diagnose you wrong and you get screwed out of the benefits you deserve.

*edited it cause I am not a doctor.*
 
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Fallenoneusn77

PEB Forum Regular Member
Registered Member
Yes, after looking at the initial paperwork I have have been diagnosed with idiopathic epilepsy and epileptic syndromes initially, without status epilepticus. Both EEG's, CT Scan, and MRI show no cause. I am trying to get a second neurologist to look at my info to either confirm the diagnosis or something else. We'll see what happens.
 

slayhert

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PEB Forum Veteran
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I am in the same boat, my EEG, CT and initial MRI scans were normal. I went to a specialist that ordered a different MRI with smaller slices etc, and they found a spot in my left temporal lobe.
For me though, mine did not start until I suffered a second TBI
 

slayhert

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PEB Forum Veteran
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Where are you at in the process?
I have been on LIMDU since Sept 2014. I was recommended for the PEB on my last MEB which occurred in Aug 2015. That was after ~10 months of trying meds and seeing specialists.
Nov 30 2015 I signed the NARSUM
FEB 8 2016 VA received my PEB package.
MAR 11 2016 VA sent my Ratings to the PEB
and I am still waiting for the official notification of the PEB findings. (LOL)
I know that since the VA rated me, that I am unfit.
 

Fallenoneusn77

PEB Forum Regular Member
Registered Member
I have been on LIMDU since Sept 2014. I was recommended for the PEB on my last MEB which occurred in Aug 2015. That was after ~10 months of trying meds and seeing specialists.
Nov 30 2015 I signed the NARSUM
FEB 8 2016 VA received my PEB package.
MAR 11 2016 VA sent my Ratings to the PEB
and I am still waiting for the official notification of the PEB findings. (LOL)
I know that since the VA rated me, that I am unfit.
Wow, that is a long f***ing time in limbo....
 

Fallenoneusn77

PEB Forum Regular Member
Registered Member
Also talked to an old shipmate who had the same diagnosis. He was placed on the TDRL for now but he only had 10 years in.
 

mr dinosaur84

PEB Forum Regular Member
Registered Member
For you guys with epilepsy on this post, there is hope to stay. I was diagnosed with lesional epilepsy back in February 2015. I did 2 LIMDU periods to get balanced out on meds. I submitted my package to the board on March 9th and they received it on the 10th. Because I am stable on meds with no seizures in over a year, I got a couple of letters written on my behalf about keeping me in the Navy, and I have 12+ years of service, my findings came back today as fit for duty. I still have to make it over the sea duty screening part but at least I can still serve. I have some other stuff in there as well such as a guarantee to moving out of a predominately sea career (I was contracted as a SWO-IW option). Don't lose hope, I have proof that you can still serve with epilepsy.
 

slayhert

PEB Forum Regular Member
PEB Forum Veteran
Registered Member
For you guys with epilepsy on this post, there is hope to stay. I was diagnosed with lesional epilepsy back in February 2015. I did 2 LIMDU periods to get balanced out on meds. I submitted my package to the board on March 9th and they received it on the 10th. Because I am stable on meds with no seizures in over a year, I got a couple of letters written on my behalf about keeping me in the Navy, and I have 12+ years of service, my findings came back today as fit for duty. I still have to make it over the sea duty screening part but at least I can still serve. I have some other stuff in there as well such as a guarantee to moving out of a predominately sea career (I was contracted as a SWO-IW option). Don't lose hope, I have proof that you can still serve with epilepsy.
Thats awesome for you! Unfortunately for me, I have tried 4 medications with varying doses, and compliments for each without success. I am glad you found relief though.
 

Fallenoneusn77

PEB Forum Regular Member
Registered Member
For you guys with epilepsy on this post, there is hope to stay. I was diagnosed with lesional epilepsy back in February 2015. I did 2 LIMDU periods to get balanced out on meds. I submitted my package to the board on March 9th and they received it on the 10th. Because I am stable on meds with no seizures in over a year, I got a couple of letters written on my behalf about keeping me in the Navy, and I have 12+ years of service, my findings came back today as fit for duty. I still have to make it over the sea duty screening part but at least I can still serve. I have some other stuff in there as well such as a guarantee to moving out of a predominately sea career (I was contracted as a SWO-IW option). Don't lose hope, I have proof that you can still serve with epilepsy.
I am also a nuclear officer and a submarine nuke repair LDO, so I am pretty much fucked :)
 
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