Narcolepsy and Chronic Migraine

I went to see my sleep doctor the other day as I do every six months to keep up on things.

I was referred to her from my neurologist for having sleep issues - one keeping me from having a good night's sleep - my neurologist thought it might be a contributor, never getting a good night's sleep, to my chronic intractable migraines.

I had no idea - this was almost 2 years ago.  I thought she was right that I didn't get good night's sleep but I thought was due to two things: 1) being in pain even while I slept; and 2) one thing I had experienced most of my adult life - "sleep paralysis with hallucinations" - I called them night terrors but have been corrected as night terrors are a different phenomenon.

Apparently, night terrors are not something the patient remembers and occur in deep sleep.

Sleep paralysis with hallucinations on the other hand (SPH I'll call it) can occur to anyone at any stage in their life but generally don't stay or reoccur often.  I had been having them nightly or almost nightly for years.  I would go sometimes weeks without them but they came back and would stay night after night keeping me from sleep.

SPH - basically occurs when you become conscious during REM sleep.  See, your body puts itself into a kind of comatose state during REM to keep you from acting out your dreams - running, etc).  So, when you become conscious (not what I knew was happening) you can't move and you have a terrified feeling.  You know you are in bed and what's around you but you can't move and start struggling to wake up.  With hallucinations, I can only describe my own, I would sense a presence, hear someone opening the door and coming in and toward me while I struggled to scream or move and couldn't, or a lot I would see a figure at the bottom of my bed and then moving toward me - coming at me - and I would struggle to scream or move and couldn't and was terrified.  I have had someone tell me they have seen two figures before so could be different.  It's a faceless figure and it is terrifying.  I would fight and fight to wake up and scream and eventually would get a little scream out and finally "wake up" and scream - alarming my husband as I bounded up to sit up.  I would be terrified, lie back down and go straight back into the same thing - over and over and over again for sometimes hours before I slept. 

Sometimes I would only think I had woken up and laid back down when I hadn't and it would start all over again - or pick up where it left off.  Needless to say - terrifying and then I would just try to stay awake.

As I said, this can happen to anyone.  But when I explained my chronic pain and these events when I slept - or tried to - my sleep doctor - who had worked for five years at the Michigan Head & Neurological Institute where I had been hospitalized so she knew those doctors and a lot about migraines - she said she thought it could be something else - Narcolepsy.  What?  I thought there is no way I have another disorder.  She talked to me about that it may be true I am having trouble with the migraines because I don't get a good night's sleep - more to the point that I wasn't getting enough deep sleep.  But the only way to truly diagnose Narcolepsy is through a sleep study in the hospital.  I had other symptoms, excessively tired during the day, more of a night owl, confusion and I would fall asleep when I didn't plan to when I thought I was staying awake - which annoyed my husband.  But I did not fall asleep in my soup or while driving, etc.  It wasn't like the movies - and she said rarely is.  Some of that and other is called cataplexy - so I was diagnosed after the sleep study with Narcolepsy without Cataplexy which is just as common as Narcolepsy with Cataplexy.  They actually couldn't determine if I had cataplexy unless an event occurred.  Ruling out my NCS as Cataplexy episodes.

The sleep study in the hospital was no fun as you are hooked up to all these wires and told when to sleep and when to be awake and when to take naps, etc.  I thought, I will never be able to sleep like this!  But I did, and they recorded all my data.  ONE of the primary ways to diagnose Narcolepsy is that you spend most of your sleep in REM and hardly any in deep sleep - causing the being tired during the day - and the wires and all record what state you are in.  The other is how long once you fall asleep it takes you to go into REM. 

Apparently the average person goes into REM sleep after about 90 minutes of sleep and then into REM again shortly before waking.  Having vivid dreams which I have always had - always felt like I dreamed all night - I thought that was normal - but other things also can cause this.  I didn't know that you really don't spend all that much time in REM.  Except for Narcolepsy - and me.  During the test I spent almost all night in REM and every time I came out of it and into deep sleep - the restful sleep - I would jump back out of it and back into REM.

As I said, narcolepsy is diagnosed also on how long it takes you to fall into REM.  In my test - I went into REM within 5 minutes of falling asleep all except twice in which it was still less than 10 minutes.  That's a diagnosis.

When I did research on the subject myself and the information packet they gave me I could tell that even though I had migraines, before my chronic non-stop migraine, I had these symptoms.  I just never added them up?  I thought I was tired because I was a single mom, working, going to school, then working 60+ hours a week and trying to take care of my kids and life, etc, etc, etc.  I thought the SPH - which I called night terrors were just a fact of my life because I had had a hard time as a child and it was a scar following me around.

As we waited for the diagnosis I told my husband there was NO way I had narcolepsy - he disagreed and said he thought I did.  He had teased me about it often but that was teasing.  Turns out, I have narcolepsy. 

There isn't anything they can do to stop the sleep cycle or force me to go into and stay in deep restful sleep.  The medication though has stopped the sleep paralysis with hallucinations - except one time I forgot to take my second pill and it happened again for two nights and when I was on a lower dosage it was happening according to my husband as he woke me up from screaming but I didn't remember it. 

I still have vivid dreams but am so relieved to not be scared to go to sleep.  I am still tired all the time, fall asleep when I don't mean to, etc. 

This is the best we can do right now.  They have suggested a medication that only one pharamacy in the US has - it's that regulated - but I have said no and my neurologist says no also.  Due to my past, etc.  It would keep me asleep - maybe - but I wouldn't have any control - the street name is GHB but of course this prescription would not have most of the bad side effects of a street made drug.  But, it is possible if I am woken up I could do anything and not have memory.  That is terrifying to me.

I know there is a medication on the market and I was prescribed but never took that is similar and I have friends that have taken it and found that they woke up and ate or other things and had no memory of it.  This is different than that in some way as that is available in all pharmacies.

So, one thing is good that I don't have the SPH - what I called night terrors anymore if I stick to my medication.  I still don't get enough restful deep sleep which absolutely contributes to my migraines and not being able to get a break away from the pain even while I'm asleep.  I am on disability now, so my sleep doctor suggested I take scheduled naps and go ahead and stay awake when I need to at night - basically - sleep when your body wants to.

Makes sense.  Sometimes I can't sleep because of how bad the migraine is but then I will feel like I lost time and find that I did go to sleep for awhile.  I'm tired but meditation helps that a lot.  Really a lot, when I can do well.  I have had trouble lately getting into a good meditative state due to the constant ringing in my ears and migraine and a couple times I have accidentally fallen asleep - narcolepsy.  But, when I do which is several times a week - have a good meditation and get into a good meditative state - when I have the time and no interruptions to take all the time I need - I feel rested and I can relax and then I can do a great yoga stretch as my muscles need it so badly.  They are so tight from the pain and without the meditation the stretch doesn't work because the pain is keeping the muscle bound and tight.

So, I guess I wanted to talk about my narcolepsy and give some support for others in that state.  Express my fear of sleep due to the "night terrors" which are not night terrors.  And show how multiple chronic illnesses can compound on each other.  Because of my narcolepsy I have more trouble with my chronic intractable migraine.  The pain, constant pain, that I tend to put first and foremost - because it screams the loudest.  Especially now that I'm not screaming in my sleep :)

Best wishes to all and take care of yourselves!