8 replies to this topic

[Supportingmyhusband]

I'll apologize in advance if this comes out really jumbled, and really long. I tend to, as my mother says "Talk until I say something". So I'm sorry. But please bare with me! I need your empathy

My husband was misdiagnosed several times before they finally did a sleep study and decided he had narcolepsy. According to the head of neurology, he's never seen a case anywhere NEAR as severe as my husbands...which isn't very reassuring- especially if you saw how old this guy is....

Anways, this whole thing has really just started happening in the last year. His symptoms have spiraled out of control, and I feel like I'm caught in a whirlwind! He's been on Provigil for most of that year, but he started Xyrem about a week ago.

I don't know if they did this to YOU GUYS....but they really scared the CRAP outta me about this stuff. I was THRILLED he was going to start a medication that had the potential to treat both symptoms simultaneously and offer him a normal life- or at least a shot at one. I was PUMPED!! And I knew how desperate he was for a good nights rest... that was something he hadn't had in three years. I can't imagine how hard that must be.... so we were all on board. First, we spent an entire day in the doctor's office, watching video's and reading pamphlets and asking questions, etc. Then the doc sort of "cornered" us and explained all about the criminal ramifications should anyone within 100 square miles get roofied(on that note- can someone PLEASE explain to me why Xyrem is a colorless, odorless, nearly tasteless liquid that has to be mixed with a drink?!?! Come on... you're setting the WORLD up for failure with that one.... who decided on that?!?! Make the drug an ugly greenish brown and make it taste like cough syrup... so when a girl tastes it in her drink she has a fighting chance!!) . Finally they started telling me exactly how knocked out my husband would be. I asked if he would stir at all....no. I asked if I would be able to wake him in an emergency....no. I asked if he could take his meds in the kitchen, so we didn't have them in the bedroom (our kids are in preschool and they like to sneak into our room at night!)... no. After getting everything answered, my basic conclusion was that my husband was about to induce his own coma every night, twice a night, for the rest of his life.

It FREAKS. ME. OUT. The first night, I cried. I litteraly felt like I was losing him. Like he was "going under" and there was no knowing when he'd "come back up". That's what the doc even said- that we didn't know how long he'd be asleep, and it was best not to wake him. I asked him, "at what point does it become a PROBLEM that he's still sleeping? 10 hours? 12?" he said never... he said if he goes past 12 hours just give the doc a call and he'll lover the dosage next time. Well to me, that meant "oops! he's in a coma! Sorry! Guess we screwed up!"

I felt like I needed to tell him stuff- like stuff I don't say enough, or things about how my day went, or what was on the schedule for tomorrow.... like he was about to enter a whole different world and he'd forget about me or something.

Like I said, it's been a week. I still freak sometimes. Like tonight... it's 2 in the morning and I can't sleep. I'm under strict instructions that should the house burn down, I am to grab the kids and let the fireman know where my husband is....no waking him. My worst fear is to have my home broken into... and I lay awake every night jumping at EVERY SOUND, scared out of my mind that someone will break in and I'll be SCREWED cuz hubby is asleep and can't defend us... One night my dog randomly started barking her head off... I about peed my pants. And of course, didn't sleep a wink.

I don't sleep well until I know that my husband has woken up for the day. It means my house is now protected, my kids are safe, the coma is lifted, and for another day, I can pretend everything is normal.

I guess I'm just such a newb at all of this that I don't know how to deal with it. There's no narcolepsy support groups out there for me. There's no "my husband has a sleep disorder" fan clubs or anything even close. What's worse, is when I try to talk to my friends, they blow it off. I get stuff like "egh, so he falls asleep from time to time... at least he's not overseas anymore!" and "hahahaha isn't it GREAT when he falls over laughing? It doesn't even have to be FUNNY and he's on the floor!" there's no sympathy. No one understands. I haven't heard my husband laugh in 3 years. Do you have any idea how much that SUCKS?Okay, of course you do! I love laughing with him. I love, love, love it. I hardly even get to see him SMILE anymore....

Anyways, in all my whining, I was just wondering if any of you had some resources for me? Or someone I could talk to who understands? Do any of you have a wife that would let me bog her down with e-mails about how to handle things? We're still so lost at this... we're not even sure how much he can handle right now. He went to work this morning at 5:00am and did PT (physical training... morning workout basically) and said he crashed on the couch in the dayroom for the REST of the day. We're having a hard time finding his boundaries. It's frustrating. I feel like every ounce of energy he has is a priceless treasure. I'm scared to DEATH of what's going to happen as this progresses....

FURTHERMORE... do any of you know enough about narcolepsy to tell me this: The army wants to medically retire him. But they want to put him on TDRL... basically a Temporary Disability... he goes on this "trial period" that can last anywhere from 6 mos to 5 years. They monitor his progress on different meds and treatments, then at the end of the trial period, they rate his disability "officially". This is a HUGE deal for us. To make things simple, if we get 100% disability, we will get 100% of the paycheck we've always recieved from the Army, and our family will be taken care of. While he's on his TDRL, they're only going to give us 50% disability. Period. We don't get more or less.

All that being said, isn't narcolepsy a progressive disorder? Is it not true that no matter how well the drugs seem to treat symptoms at this point, eventually medication will fail and there will be no treatment for the severity of your symptoms? So if they're putting him on this trial period, and at the end of it it seems that the Xyrem dosages have been leveled out, and the meds are helping him be a productive person, it doesn't really amount to a hill of beans right? Because eventually the narcolepsy will win, and the drugs will fail, and he won't be of use anymore. The POINT of the US Army Medical Board is to decide, "if we let this person out of his contract with the Army, because of this disorder, what percentage of his body is effected by his disorder? Can he find and maintain a civillian job in spite of the problems?"... so to me, it seems like the answer to those questions are: 100% of his body is effected, and no. Eventually he will not be able to maintain work due to his condition.

Whatever they decide is final. My husband is a pretty extreme case. I'm just worried that if the Xyrem works TO well, we won't get the percentage we need. I don't want them to look at him and say "hey great job!" and give us 10 percent. PS... that's what they want to give us right now.... no joke. 10%. It works out to about $150 a MONTH...Which is why we're fighting it, and they want to do this TDRL thing instead.

So do any of you happen to know any details we could bring to the med-board appeal (which is basically court!) that our JAG officer can use to fill in the gaps here? Is there medical proof out there that is substantial enough for us to present it to the board and make it convincing? I want to avoid TDRL entirely. I want to get our rating, and move on with our lives. I think it's total BS that they're trying to act like his symptoms can be entirely controlled by medication. If that were the case, we'd still be in the Army dang it!!! I haven't even seen his symptoms LEVEL OUT in the last year. Every day something new... hallucinations, auto-behavior, sleep paralysis, cataplexy, sleep walking... a million REM intrusions that change, evolve, and worsen every day. I WANT Xyrem to work, but if it works too well, the Army is going to sink our ship.

Okay thank you for reading and listening. I'll go back and edit this to make it as short as I possibly can. Thanks for all your help! NN... you guys are my lifeboat!!

[Lisa Kato]

I'll apologize in advance if this comes out really jumbled, and really long. I tend to, as my mother says "Talk until I say something". So I'm sorry. But please bare with me! I need your empathy

My husband was misdiagnosed several times before they finally did a sleep study and decided he had narcolepsy. According to the head of neurology, he's never seen a case anywhere NEAR as severe as my husbands...which isn't very reassuring- especially if you saw how old this guy is....

Anways, this whole thing has really just started happening in the last year. His symptoms have spiraled out of control, and I feel like I'm caught in a whirlwind! He's been on Provigil for most of that year, but he started Xyrem about a week ago.

I don't know if they did this to YOU GUYS....but they really scared the CRAP outta me about this stuff. I was THRILLED he was going to start a medication that had the potential to treat both symptoms simultaneously and offer him a normal life- or at least a shot at one. I was PUMPED!! And I knew how desperate he was for a good nights rest... that was something he hadn't had in three years. I can't imagine how hard that must be.... so we were all on board. First, we spent an entire day in the doctor's office, watching video's and reading pamphlets and asking questions, etc. Then the doc sort of "cornered" us and explained all about the criminal ramifications should anyone within 100 square miles get roofied(on that note- can someone PLEASE explain to me why Xyrem is a colorless, odorless, nearly tasteless liquid that has to be mixed with a drink?!?! Come on... you're setting the WORLD up for failure with that one.... who decided on that?!?! Make the drug an ugly greenish brown and make it taste like cough syrup... so when a girl tastes it in her drink she has a fighting chance!!) . Finally they started telling me exactly how knocked out my husband would be. I asked if he would stir at all....no. I asked if I would be able to wake him in an emergency....no. I asked if he could take his meds in the kitchen, so we didn't have them in the bedroom (our kids are in preschool and they like to sneak into our room at night!)... no. After getting everything answered, my basic conclusion was that my husband was about to induce his own coma every night, twice a night, for the rest of his life.

It FREAKS. ME. OUT. The first night, I cried. I litteraly felt like I was losing him. Like he was "going under" and there was no knowing when he'd "come back up". That's what the doc even said- that we didn't know how long he'd be asleep, and it was best not to wake him. I asked him, "at what point does it become a PROBLEM that he's still sleeping? 10 hours? 12?" he said never... he said if he goes past 12 hours just give the doc a call and he'll lover the dosage next time. Well to me, that meant "oops! he's in a coma! Sorry! Guess we screwed up!"

I felt like I needed to tell him stuff- like stuff I don't say enough, or things about how my day went, or what was on the schedule for tomorrow.... like he was about to enter a whole different world and he'd forget about me or something.

Like I said, it's been a week. I still freak sometimes. Like tonight... it's 2 in the morning and I can't sleep. I'm under strict instructions that should the house burn down, I am to grab the kids and let the fireman know where my husband is....no waking him. My worst fear is to have my home broken into... and I lay awake every night jumping at EVERY SOUND, scared out of my mind that someone will break in and I'll be SCREWED cuz hubby is asleep and can't defend us... One night my dog randomly started barking her head off... I about peed my pants. And of course, didn't sleep a wink.

I don't sleep well until I know that my husband has woken up for the day. It means my house is now protected, my kids are safe, the coma is lifted, and for another day, I can pretend everything is normal.

I guess I'm just such a newb at all of this that I don't know how to deal with it. There's no narcolepsy support groups out there for me. There's no "my husband has a sleep disorder" fan clubs or anything even close. What's worse, is when I try to talk to my friends, they blow it off. I get stuff like "egh, so he falls asleep from time to time... at least he's not overseas anymore!" and "hahahaha isn't it GREAT when he falls over laughing? It doesn't even have to be FUNNY and he's on the floor!" there's no sympathy. No one understands. I haven't heard my husband laugh in 3 years. Do you have any idea how much that SUCKS?Okay, of course you do! I love laughing with him. I love, love, love it. I hardly even get to see him SMILE anymore....

Anyways, in all my whining, I was just wondering if any of you had some resources for me? Or someone I could talk to who understands? Do any of you have a wife that would let me bog her down with e-mails about how to handle things? We're still so lost at this... we're not even sure how much he can handle right now. He went to work this morning at 5:00am and did PT (physical training... morning workout basically) and said he crashed on the couch in the dayroom for the REST of the day. We're having a hard time finding his boundaries. It's frustrating. I feel like every ounce of energy he has is a priceless treasure. I'm scared to DEATH of what's going to happen as this progresses....

FURTHERMORE... do any of you know enough about narcolepsy to tell me this: The army wants to medically retire him. But they want to put him on TDRL... basically a Temporary Disability... he goes on this "trial period" that can last anywhere from 6 mos to 5 years. They monitor his progress on different meds and treatments, then at the end of the trial period, they rate his disability "officially". This is a HUGE deal for us. To make things simple, if we get 100% disability, we will get 100% of the paycheck we've always recieved from the Army, and our family will be taken care of. While he's on his TDRL, they're only going to give us 50% disability. Period. We don't get more or less.

All that being said, isn't narcolepsy a progressive disorder? Is it not true that no matter how well the drugs seem to treat symptoms at this point, eventually medication will fail and there will be no treatment for the severity of your symptoms? So if they're putting him on this trial period, and at the end of it it seems that the Xyrem dosages have been leveled out, and the meds are helping him be a productive person, it doesn't really amount to a hill of beans right? Because eventually the narcolepsy will win, and the drugs will fail, and he won't be of use anymore. The POINT of the US Army Medical Board is to decide, "if we let this person out of his contract with the Army, because of this disorder, what percentage of his body is effected by his disorder? Can he find and maintain a civillian job in spite of the problems?"... so to me, it seems like the answer to those questions are: 100% of his body is effected, and no. Eventually he will not be able to maintain work due to his condition.

Whatever they decide is final. My husband is a pretty extreme case. I'm just worried that if the Xyrem works TO well, we won't get the percentage we need. I don't want them to look at him and say "hey great job!" and give us 10 percent. PS... that's what they want to give us right now.... no joke. 10%. It works out to about $150 a MONTH...Which is why we're fighting it, and they want to do this TDRL thing instead.

So do any of you happen to know any details we could bring to the med-board appeal (which is basically court!) that our JAG officer can use to fill in the gaps here? Is there medical proof out there that is substantial enough for us to present it to the board and make it convincing? I want to avoid TDRL entirely. I want to get our rating, and move on with our lives. I think it's total BS that they're trying to act like his symptoms can be entirely controlled by medication. If that were the case, we'd still be in the Army dang it!!! I haven't even seen his symptoms LEVEL OUT in the last year. Every day something new... hallucinations, auto-behavior, sleep paralysis, cataplexy, sleep walking... a million REM intrusions that change, evolve, and worsen every day. I WANT Xyrem to work, but if it works too well, the Army is going to sink our ship.

Okay thank you for reading and listening. I'll go back and edit this to make it as short as I possibly can. Thanks for all your help! NN... you guys are my lifeboat!

Sometimes the Narcolepsy makes it hard t concentrate on reading but I did skim your message. I know that Provigil and nuvigil did not work for me. I recently switched to Ritalin and am doing much better. Cataplexy and Sleep paralyis (SP) are also helped by SSRI (Antidepressants) While prozac nearly eliminated my SP it increased my waking hallucinations and daytime sleepiness so I had to stop. Doc offered me Xyrem and if things get bad enough I would do it but for me it is a last resort. Have you tried other meds or just the Provigil and Xyrem? Also from what I have heard N is not degenerative. My symptoms have evolved over time starting with SPHH (Sleep Paralysis with Hypnogogic/Hypnopompic Hallucinations) at age 7, Severe Daytime sleepiness in my teens and now again in my 40s, my mother did not develope (what appeared to be) cataplexy till much later in life. I also had a vitamin d deficiency that was contributing to my symptoms as well. As far as nagivating the military, I don't know, my friend (who's husband ins enlisted) has have had difficulty cuz they like to keep everything in house. She gets the run around a lot. She has gotten a lot more consideration by talking with outside aid as well (legal, medical, social services). I hope things work out for you. Keep us posted.

Lisa

[sdsmith]

Hi Desperate Housewife:

I'm so glad you posted about your concerns but I think you will find most of your fears allayed by the responses you get here.

I have classic narcolepsy and am a firm believer in the benefits of Xyrem for narcolepsy. I participated in the drug trials for Xyrem for 3 years and found it to be better than any other medication I had ever taken. I'd still be taking it if it weren't for lousy prescription coverage. Of all the military personnel that I've communicated with over the years, your husband is the first I've heard being able to get Xyrem, being given a chance and not being tossed out immediately with a zero disability rating. I hope this is a sign that the trend has shifted! It's only fair.

Xyrem is a serious drug. Your husband's doctor likely has not ever witnessed a person taking Xyrem. He wanted to make sure you followed the safety protocols. It's unfortunate that he scared you in the process. Xyrem does not produce a coma. Granted, it may be difficult to wake while it's in one's system but it is possible. I am able to get up and go to the bathroom if need be. If there were a fire or a burglar chances are your husband's adrenalin would kick in and allow him to react.

What is his starting dose? Studies early on showed the optimal dose as 6 grams per night, in two 3 gram doses, but patients are usually started on a lower dose (two 1.5 or 2.25 gram doses per night). One important factor for you to keep in mind is that Xyrem is approved for treatment of excessive daytime sleepiness and cataplexy, NOT for improvement of nighttime sleep. Improved nighttime sleep is a side benefit. There are doctors who mistakenly think that the patient's Xyrem dosage should be increased if they are not sleeping through the night,. Not true. The average patient gets 2.5 hours of sleep per dose. If your husband's dose is increased but he finds no further improvement in daytime symptoms he is probably taking more Xyrem than he needs and that could lead to undesirable side effects.

With young children in the house it is imperative that you keep the Xyrem out of reach. The dosing bottles that come in the box have childproof caps, as does the bottle of Xyrem, but you should store the medication on a high shelf out of sight. To be on the safe side your husband should not joke with coworkers or otherwise let the word get out that he is taking Xyrem. Remove the identifying labels from the bottles before you dispose of them and also from the box, which you can shred so no one can guess from your trash that you have this medication on hand.

Did the doctor tell you that the active ingredient in Xyrem mimics a natural substance in the brain? Narcolepsy is much more than daytime sleepiness. Nighttime sleep is disrupted and the sleep cycles are out of order. Poor and insufficient nighttime sleep contribute to daytime sleepiness so it make sense that improving nighttime sleep works to reduce daytime symptoms. Still, there is almost certainly a chemical reason why Xyrem works for narcolepsy.

There is a food effect with Xyrem. For this reason, it's supposed to be taken 3 hours or more after one's last meal. High fat meals detract the most. This is a big part of the reason no flavoring is added to Xyrem. Xyrem can be mixed with a non-caloric drink mix such as Crystal Light. Xyrem is very salty even when diluted with water. Chances are someone tasting it would spit it out immediately. Also, it must be removed from the bottle with the syringe. Nothing will come out if one tries to pour the liquid out of the bottle, which adds another safety element when there are children in the house.

Narcolepsy is progressive but only to a point. Symptoms usually develop over 10-20 years. Your husband is probably towards the end of that period already. It likely started around puberty. Medication tolerance is more a problem for those with narcolepsy without cataplexy and particularly with amphetamines (dexedrine adderall and desoxyn). Provigil didn't do much for me. What seems like tolerance may actually be an indication that it's not the right drug.

The SSRIs are not terribly effectively for the REM symptoms of narcolepsy. If your husband has breakthrough sleepiness and/or cataplexy the best antidepressants to consider are Effexor and Strattera. Contact NN if you'd like more info on these medications.

One further suggestion: your husband should contact the nearest regional office of the Disabled American Veterans (www.dav.org). While Narcolepsy Network and fellow patients and family members can help you with all things narcolepsy, we don't know the inner working of the military. The DAV does and will work with your husband to make sure his rights are protected. He should have the right to accommodations so that he can take a nap during the day provided they are reasonable and not unduly burdensome. This is subject to interpretation case by case, so it essential that you have an advocate from the DAV on his side. Please check with them on the TDRL. Perhaps there is a way to avoid losing half of your income! I also understand from others who have been there that disability rating one gets upon leaving the service is almost impossible to change afterwards and your continuing benefits from the military hang in the balance.

There's so much more to say but learning about narcolepsy and how to help your loved one is a process just like anything else in life. I hope that your husband will respond very well to Xyrem. It shouldn't be long before he dares to laugh again!

Best wishes to your entire family!

Sharon
(Past President, NN Board of Trustees)

[sdsmith]

Hi Desperate Housewife:

In re-reading this thread I noted two additional points worth making, so here I am again.

You mentioned that you " haven't even seen his symptoms LEVEL OUT in the last year. Every day something new... hallucinations, auto-behavior, sleep paralysis, cataplexy, sleep walking... a million REM intrusions that change, evolve, and worsen every day."

Before the late 1990s there were no medications approved specifically for treating the symptoms of narcolepsy. I was diagnosed in 1989 after developing full-body cataplexy. Initially I took Cylert (no longer on the market due to potential for sudden liver damage) for sleepiness and imipramine for cataplexy. Neither worked well for me yet the side effects were atrocious. I was switched to Dexedrine and Vivactil for wakefulness and cataplexy, respectively. The Dexedrine made my body feel revved up but didn't help my alertness at all. Vivactil worked a bit better for cataplexy but I could still have breakthrough cataplexy at any time. I was glad to go off these meds when my husband and I decided to have a second child, and I stayed off meds for the next two years. What I learned was that the medications I had been taking were just as likely to exacerbate my symptoms as they were to reduce them.

In your husband's case, the Provigil he takes does not treat cataplexy and Prozac is not very effective in relieving cataplexy except at very high doses.

When Effexor (immediate release) debuted in 1994 I agreed to give it a try. Within a few months my doc and I had figured out the best dose and timing for taking this medication and I have been cataplexy-free (except late at night, when there are few triggers) ever since on that same dose and timing. At first I took the Effexor in three doses each day. This is how it's prescribed for depression. I noticed that my cataplexy was less likely later in the day. I also had trouble remembering to take later doses, so the doc agreed that I could take it all in the morning. That made all the difference. My sleep paralysis and HH were all but gone as well. As it turns out, Effexor is mildly wake-promoting. That late afternoon dose made it harder to for my brain to transition through the sleep stages and actually promoted that half-asleep, half-awake state in which hallucinations occur! I had a similar experience when my doc switched me to the extended release form of Effexor. Having a higher concentration of Effexor in my system at bedtime brought back the hallucinations.

Provigil came out when I had been on Effexor for 6 years, way long enough to know what to expect from Effexor. After three days I on Provigil began having mild cataplexy. In other words, it was making my cataplexy med less effective. I decided I could only take Provigil occasionally and not for more than 2 days in a row. One day, after taking Provigil, I felt wide awake and decided to drive to a friend's house. I fell asleep on the way without any warning that I was getting sleepy. I realized that Provigil took away my ability to judge my level of sleepiness, something I needed to be able to do to avoid accidents and sleep attacks, so goodbye Provigil.

Sorry for all this detail, but I wanted to show how even the right medication taken at the wrong time can be problematic. I take Strattera occasionally for wakefulness, on days when I may not be able to get in a nap, but I must take it first thing in the morning or else it will not have worn off sufficiently by bedtime and I can either have trouble going to sleep or more hallucinations. Fortunately, Xyrem treats all symptoms of narcolepsy and there is only one dosing regimen, so it doesn't present the issues that some of the other meds do. There is also no rebound with Xyrem. If you stop taking it the benefits wear off very gradually. With antidepressants, cataplexy often returns with a vengeance as one weans off the medication.

So, it may be that your husband's symptoms have been worsening, but if he's already got severe cataplexy, my bet would be that the symptoms you've been seeing are a medication roller-coaster effect.

On the TDRL, one of my narcolepsy friends retired from the military with a 100% disability rating. I will ask him privately to chime in here.

Sharon

[caffeine4starters]

Hi Desperate Housewife:

In re-reading this thread I noted two additional points worth making, so here I am again.

You mentioned that you " haven't even seen his symptoms LEVEL OUT in the last year. Every day something new... hallucinations, auto-behavior, sleep paralysis, cataplexy, sleep walking... a million REM intrusions that change, evolve, and worsen every day."

Before the late 1990s there were no medications approved specifically for treating the symptoms of narcolepsy. I was diagnosed in 1989 after developing full-body cataplexy. Initially I took Cylert (no longer on the market due to potential for sudden liver damage) for sleepiness and imipramine for cataplexy. Neither worked well for me yet the side effects were atrocious. I was switched to Dexedrine and Vivactil for wakefulness and cataplexy, respectively. The Dexedrine made my body feel revved up but didn't help my alertness at all. Vivactil worked a bit better for cataplexy but I could still have breakthrough cataplexy at any time. I was glad to go off these meds when my husband and I decided to have a second child, and I stayed off meds for the next two years. What I learned was that the medications I had been taking were just as likely to exacerbate my symptoms as they were to reduce them.

In your husband's case, the Provigil he takes does not treat cataplexy and Prozac is not very effective in relieving cataplexy except at very high doses.

When Effexor (immediate release) debuted in 1994 I agreed to give it a try. Within a few months my doc and I had figured out the best dose and timing for taking this medication and I have been cataplexy-free (except late at night, when there are few triggers) ever since on that same dose and timing. At first I took the Effexor in three doses each day. This is how it's prescribed for depression. I noticed that my cataplexy was less likely later in the day. I also had trouble remembering to take later doses, so the doc agreed that I could take it all in the morning. That made all the difference. My sleep paralysis and HH were all but gone as well. As it turns out, Effexor is mildly wake-promoting. That late afternoon dose made it harder to for my brain to transition through the sleep stages and actually promoted that half-asleep, half-awake state in which hallucinations occur! I had a similar experience when my doc switched me to the extended release form of Effexor. Having a higher concentration of Effexor in my system at bedtime brought back the hallucinations.

Provigil came out when I had been on Effexor for 6 years, way long enough to know what to expect from Effexor. After three days I on Provigil began having mild cataplexy. In other words, it was making my cataplexy med less effective. I decided I could only take Provigil occasionally and not for more than 2 days in a row. One day, after taking Provigil, I felt wide awake and decided to drive to a friend's house. I fell asleep on the way without any warning that I was getting sleepy. I realized that Provigil took away my ability to judge my level of sleepiness, something I needed to be able to do to avoid accidents and sleep attacks, so goodbye Provigil.

Sorry for all this detail, but I wanted to show how even the right medication taken at the wrong time can be problematic. I take Strattera occasionally for wakefulness, on days when I may not be able to get in a nap, but I must take it first thing in the morning or else it will not have worn off sufficiently by bedtime and I can either have trouble going to sleep or more hallucinations. Fortunately, Xyrem treats all symptoms of narcolepsy and there is only one dosing regimen, so it doesn't present the issues that some of the other meds do. There is also no rebound with Xyrem. If you stop taking it the benefits wear off very gradually. With antidepressants, cataplexy often returns with a vengeance as one weans off the medication.

So, it may be that your husband's symptoms have been worsening, but if he's already got severe cataplexy, my bet would be that the symptoms you've been seeing are a medication roller-coaster effect.

On the TDRL, one of my narcolepsy friends retired from the military with a 100% disability rating. I will ask him privately to chime in here.

Sharon

It's been awhile since I used this forum so let's see if I still remember how to do this before having cataplexy.

I am supposed to be following Desperate Housewife's and Sharon's trend, so here goes:

It is extremely important that you and your husband and any military readers out there familiarize yourselves with this LINK... I cannot emphasis how important this is... and check out everything you can find on the link related to Narcolepsy and Cataplexy by service branch. The VA and the military are supposed to use the same tables for evaluating narcolepsy/cataplexy which is used for petit mal epilepsy. It's like asking a group of Republicans and Democrats to read the same paragraph and then having each member explain to the class what was read. What seems simple on the surface, is not. You need to have specific documentation in your medical records as to how many attacks one is having... one a day should do it for 100% but again it is not that simple and records get "lost." This is the site or URL:
http://vets.yuku.com...tary-to-VA.html

Just using the computer now, aggravates my EDS, cataplexy, and micro-sleeps but take it from the only person in the entire active duty military since 1983 to ever be 100% service connected by his or her branch of service, if you husband has been offered TDRL, take it. Make sure you have copies of all service medical records because you can count on them being lost by the VA and heaven knows who else, several times before you complete this wonderful process with the military first, the VA, and social security. I have done this with the military, twice with Social Security, and since last August the second time around with the VA with a trip 3-hours each way from my home last Wednesday to "prove" to some paper pusher that I have uncontrollable cataplexy and cannot work with the comment being made: "Oh the VA should have rated you the same as the Air Force (TDRL at 60% converted to PDRL at 100% in 1986)." I wanted to say: "No kidding," but was already having cataplexy so badly I could not speak. And, besides, my wife was with me and I promised her I would try to be "nice."

Yesterday, for the fourth time, I received from the VA more paperwork that my claim from August was being held up because my doctors at Duke had not sent their records on me when the Releases of Information have been sent to the VA, Duke's Release of Information, and each individual doctor, four times, and by certified mail with the VA in the same letter informing me that it is "my responsibility to get this done." Let me go to Washington or wherever and I promise I can type of the computer on a good day the information once and for all correctly to get this done. So, if you fangs are showing in this response, it is to let you know how serious this matter is and how important it is to become anal/retentive or however you have to do it to document and make copies of every record you receive or send out to the government.

You may not like the TDRL, but some money coming in is better than no money coming in and I have more than 20-years of statistics by service branch documenting that for narcolepsy, each branch would rather rate you less than 30% so they don't have to medically retire you for narcolepsy and in their mind's eye they will often tell you face-to-face, "Take your chances with the VA." I have a potential class action lawsuit against the State of North Carolina for property tax relief based on a VA evaluation that there is no legal requirement for Veterans to take their retirement from the VA and the argument that many of us are not alive to apply for the VA process or our surviving cannot get through the system. Eventually you will want to be 100% by the VA itself whether based on a flat 100% due to frequency of narcolepsy attacks or 60% bumped to 100% based on "unemployability." Since I did not annuitize my military pay (SRB) because at the time we had plenty of term insurance in case I kicked the bucket, like yourself, we needed every penny to live on. My wife has stuck with me for over 30-years now and she deserves some compensation for this madness. So if I now elect VA compensation which until a few years ago was offset by the retirement pay, if the VA 100% me as they should, then if I live 10 more years with this disability or die as a result of the service connected disability, my wife will be entitled to what the VA calls DIC... a fractional portion of what I would receive. Now won't that be a "lucky" woman. But, with Social Security if it is still around, her retirement, and the DIC, she might survive.

The JAG officer who is supposed to give your husband advice, works for JAG and the military. In my opinion it is a conflict of interest to be represented by anyone associated with the JAG equivalent per branch of service the way the system is set up. The officer appointed is "supposed" to assist your husband with making the best decision, which from JAG's perspective is in the "best interest" of the Army, Navy, Air Force, Marines, Cost Guard, whoever. Too many disability "wins" for the JAG officer and it will affect his or her performance report somehow. With TDRL there is not supposed to be "command influence" in the medical decision making. Sometimes there is none, but don't count on this with narcolepsy. The military would rather Article 15 a person out of service with a General vs. an Honorable Discharge and leave it up to the Vet to go through the process with the VA to get the discharge upgraded. If you husband has a line number for rank, most likely he will lose it. He might even have a performance evaluation downgraded. Under other circumstances than TDRL, a "Correction of Military Records" is an even longer drawn out process. But, what happens with TDRL, if there is any heavy-handedness and usually there is, by the time the reviews come around under TDRL and this reaches the Service Secretaries desk, usually most of these "blemishes" have been "healed" in favor of the individual getting permanent retirement. And, if your husband has not had his PEB, he needs to be a super trooper and talk about love of God and Country and the cure for narcolepsy just around the corner within the next five years so that the military will not have wasted its investment in your husband's training and that TDRL is more "cost effective" to the country and individual. Take the TDRL and get permanently retired. If that has been offered, you are indeed fortunate. I will try and find my statistics sheet by branch of service and then maybe you will "see" for yourselves I'm not quite the jerk that this writing sounds like. You have other problems up the road with narcolepsy. On TDRL, your husband can use his educational benefits, if still able. But, make sure those attacks are NUMBERED by frequency in each medical visit from here on out... "Hey doc, you didn't write I was averaging 3 of these a day." The people at the VA cannot read. They need to see a NUMBER. Duh!!! Hope this helps. I know it is not what you want to hear. One is better of with an HIV-positive diagnosis than one with Narcolepsy. The military wrongfully treats persons with narcolepsy as if they have the plague.

[merrymom1013]

Hi Desperate Housewife,
I can relate to some of what you are going through. I have a daughter with narcolepsy- she began having symptoms at about age 10 and was on xyrem by 13. I can remember staying up all night. For a time when she was about 11, she was back in my bed because of the severity of the HH. For the first year she took xyrem, I'd set my alarm for 2 am to check her & wake her for the 2nd dose. It does get easier. Just like your husband, you'll learn to live with this. If you can find a support group for people with narcolepsy, go. With or without your husband. Listen & if you have a question ask. It's a tremendous help for those of us who don't know what it's like. The same is true of this forum. There are a few of us here who are parents or spouses of PWN.

[caffeine4starters]

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Hi Desperate Housewife,
I can relate to some of what you are going through. I have a daughter with narcolepsy- she began having symptoms at about age 10 and was on xyrem by 13. I can remember staying up all night. For a time when she was about 11, she was back in my bed because of the severity of the HH. For the first year she took xyrem, I'd set my alarm for 2 am to check her & wake her for the 2nd dose. It does get easier. Just like your husband, you'll learn to live with this. If you can find a support group for people with narcolepsy, go. With or without your husband. Listen & if you have a question ask. It's a tremendous help for those of us who don't know what it's like. The same is true of this forum. There are a few of us here who are parents or spouses of PWN.

I totally agree with Merrymom's advice to Desperate Housewife on the importance of support groups and social networking, particularly with sites like this one. One of the more fascinating observations when meeting with a group of PWN, is to see the "first timer" as he or she walks into the room where the meeting is being held and the expression on the newcomer's face, often for the first time, seeing and meeting people like himself with narcolepsy. Instead of tearing up when this happens, most of us with cataplexy when we pick up on the newcomer's initial reaction don't have time to shed a tear for we are already in a full blown attack as the pathos is so moving and we know that our experiences with narcolepsy/cataplexy both good and bad will some how open closed doors and give hope to the affected individual(s) and family.

My caution with part of Merrymom's advice, and I honestly do love positive people, when sometimes I sound so negative, is this: We learn how to cope better and develop better coping skills; but, my caution regarding the phrase "it does get easier." I don't think research will support that in the long run as things currently exist in 2010 more than 100 years ago when monographs on narcolepsy diagnosis were first reported. Just wait until you have a physician pull out his or her latest textbook or neurology reference book off his library shelf and have the book open to the pages on narcolepsy to gather your most recent patient history and perform your exam with the list of meds, etc. "that work." Many of you were not even born when I took ninth grade science and our high school science teacher shared with the class that "often" by the time the latest research and technology makes it into a textbook, the information is already many years old. There are too many in the medical community who like to define our symptoms for us and make the "illness" fit a certain paradigm. I have seen a number of "experts" in the field do this at conferences, research papers, and in my own medical records when the "fit wasn't so." Age of onset is one some of my doctors particularly new medical school interns and residents like to skew. I was 31 when I had my first attack of cataplexy. Thirty-one does not correspond with an adolescent's age. This seemingly "minor" detail has enormous consequences if left uncorrected particularly for military people when the person is seeking disability compensation either from their service branch or the VA. They (and many other doctors) like to use the term "existed prior to service" because they read somewhere that this disease develops in adolescents. Did it for that individual or did it not? I have yet to meet a person with narcolepsy who does not have some variation with his or her symptoms and treatments that do not fit the typical mold at some time or another.

Does "it get easier"? I would like to think so, but in actuality I do not believe that is the case. I think for most of us there are periods of exacerbations and remission. Some are of short duration for some folk and for others, a longer duration. After one narcolepsy annual conference, I asked one of our expert speakers privately after he had finished his presentation trying to confirm HLA-DR2 positive people with the propensity to develop narcolepsy/cataplexy by reminding him that the "twin" studies that he didn't mention, do not support this and asked him how to explain based on the "paradigm" he had just presented how was it that my mother who is HLA-DR2 positive like myself does not have narcolepsy but in her 80's does have Parkinson's and that after my dad died a few years back who was HLA-DR2 Negative, had been diagnosed with narcolepsy shortly before he died. I did not get a response. Since that time, much more work and better research has been done in this area.

Many of the medications used to treat cataplexy are often used in psychiatry for other disorders. That can really throw some doctors off too particularly when you tell them a psychiatrist is prescribing Anafranil to treat your cataplexy. Most of us have learned to "sense" this in some doctors and can defend ourselves whether the doctor believes us or not, but constantly being on-guard to defend one's integrity when it has been impugned upon, often triggers my cataplexy reinforcing the concept that things are not getting easier.

Many of our medications come with a PPI (patient package insert) telling us that for many of our medications there is a minimal therapeutic response often of two or more weeks. And, the PDR (physician's desk reference) and Nursing Drug References typically say the same thing. Most sleep disorder specialists know this may not be so, but not necessarily your Urgent Care, ER, or Family Practice Doctor. Many times for those of us with severe narcolepsy, our meds are dose-related, we don't have to wait days or months for a therapeutic response and sometimes we have to remind our specialists treating us of this. The same is true when switching back and forth between some of these meds. Some need to be tapered off very slowly and not cold turkey. It's a good thing to ask your provider when switching meds quickly if he or she thinks you might have a Serotonin reaction which in some cases if fatal. Having to advocate for oneself like this as a PWN does not reassure me that "it is getting easier" particularly when I learned after-the-fact that the symptoms I had at home for three days when I thought I might be dieing could have been those associated with a serotonin reaction.

I love humor, I like to be around positive people, but while we can joke among ourselves about our disorder, Narcolepsy is nothing to be Polly-Annish about. If you cannot tell by now, I am going through one of those difficult times which people with narcolepsy go through. I know in the end, things will work out. So therefore, there is hope because I expect good things to come. Generally, I avoid groups like this because typically when I have to get involved with matters dealing with narcolepsy I would rather have PTSD than have to go through "stuff" that should be "old hat" and taken care of years ago. Had Sharon not asked me to address Desperate Housewife's concerns, you wouldn't be hearing a peep out of me. I like the manic side of me without the Dexedrine and prefer natural highs to having to take CNS stimulants or stay in bed most of the day. But, that is part of the reality of this disorder and when recently asked at the Durham VA by a doctor I had been seeing for over 26-years, "Mr. XXX, just what is it that the VA can do for you?" I was so flabbergasted and "freaked out," that I said, "The VA can find a cure." I meant it.

Now, here is some additional information for Desperate Housewife and others in the military if I can upload this stuff correctly. Remember I told you I had 20-years of statistics by service-branch on Active Duty troops discharged for Narcolepsy and that I was the only military member to date to go out on 60% TDRL and eventually be permanently retired at 100% PDRL, I was almost court-martialed for making the decision to go against JAG's advice to take a lump sum separation which would have been about $25,000 at that time but which the military does not tell you that if the VA later rates you at 100% you don't collect any money until such time as the amount of your "reward" (makes it sound like we served for doggie biscuits) exceeds the $25,000 lump sum (probably around 24 to 26 months Desperate Housewife) in addition to those months you husband has been out of work drawing nothing. Now do you understand why I say if he was or is offered to get out on TDRL to take it?

Which branch of service would you like to be on active duty when you are first diagnosed with narcolepsy and the military decides to kick your out?

Check out the attachments.

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[vidar]

Hi,

Given the severity of your husband's disease I wanted to point out that only 70% of people will get any sort of response to Provigil. This is because the response to provigil appears to depends on the patient's genetics, and genetic variance in a particular gene called COMT. Basically, if your husband had no response what so ever to provigil, his neurologist will either need to really kick up the dose or better yet switch him to a different drug.

If he is skeptical, it was recently discussed in by Bodenmann et al. "Pharmacogenetics of modafinil after sleep loss: catechol-O-methyltransferase genotype modulates waking functions but not recovery sleep." but has been known as early as 2002.

[Lucestrife]

I also wanted to chime in, as someone who has worked as a 911 operator. You can call the police non-emergency number, or even 911, if you're afraid that there may be someone outside your house. They're used to those kind of calls, and if your dog is going nuts that's good enough for them. My advice would be to call the non-emergency number and ask the Lt to send officers not on call to check by throughout the evening. If you'd prefer an on-going solution you could meet with the Nighthawk and explain your concerns confidentially. My experience has been that the more they know about everyone's situation, the better able they are to protect people. Where I work, when we had danger in a specific neighborhood, we would reflexively send people to watch near households or regions that were particularly sensitive. I think that developing a good relationship with local officers, and perhaps training in firearms or martial arts yourself, might do a lot to make you feel more secure at night.