Friday, October 22, 2010

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!

7 comments:

  1. Wow, I don't know how I would deal with the waking dream part!!! Glad some medications help. Sounds horrible.

    I was given seroquel to help me sleep with The Headache, and I ended up at work sitting in my car and I didn't even remember getting up, getting dressed, and driving 45 miles into the city. Scared me, so I can understand your hesitation with the stronger medication

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  2. Oh my, Winny, that is what I am scared of - I think the med I was put on - not for narcolepsy, before that that I have had friends on was Ambien and I have heard very similar stories to yours with that and did before so I didn't take it and therefore am even more scared to take this stronger - only one pharmacy in the US - medication.

    I am SO happy to not be having the "what I called night terrors - SPH" anymore. It was unimaginable - I would be praying saying the Lord's Prayer in my sleep and saying in my sleep "In the name of God I renounce you Satan" and other times I thought it was a person from my past childhood come back to abuse me again and sometimes I would think - maybe let it happen and then it would be gone - but horrible.

    I did find out that if it happens you are supposed to stay calm - very hard - and the "paralysis" from REM when you come out is descending so stay calm and try first to wiggle an eyebrow and go down from there. Maybe and I hope works for someone else out there - maybe someone who doesn't have the hallucinations - because it can happen to you even if you aren't narcoleptic - my therapist has had it happen to her. And her description was close to mine but two figures and they would just stand at the end of her bed. And she's not narcoleptic.

    So, hopefully, if you are or not narcoleptic and it happens to you - remember to stay calm and the paralysis will end descending so try to wiggle and eyebrow and slowly you should come out of it. I don't know though how you keep from going back into it - maybe that's a narcolepsy thing.

    I remember so many many times thinking I had woken up and then all of a sudden realizing I hadn't and I was back unable to move in bed and there he was.

    Oh - terribly frightening - so glad I'm not dealing with it.

    I still talk in my sleep - and I sometimes can enter REM while awake and talk to my husband - usually I'm going to sleep at this point and he's saying wake up and I'm saying I am awake and other stuff - I never remember any of that.

    And I know my mom said I would talk to her in my sleep when she would wake me up for school and be sure I was awake and leave for work - but I was never awake and remember none of it.

    Funny - I guess.

    Are you off the seroquel? Did it help with the migraine? The Ambien they gave me that I didn't take was also for my migraine and help me sleep - but I was too scared.

    I have a friend who took it and would find out the next morning she had gotten up and eaten a bunch and once her husband said great sex last night and she didn't remember it so she went off it - said if she was going to have great sex she wanted to remember it.

    Anyhow - I hope you are well and things are working for you - so hard to get all the pieces together.

    Elizabeth

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  3. Holy smokes, I literally have not met anyone who had the same sleep paralyis experiences I do! Not sure if I am narcolepic as well but I'll bring it up to my neuro. I am sleep deprived and do not have a normal sleep cycle... and do have chronic migraines. But this whole tearing myself awake from freaking myself out is making things way worse. My shrink wants me to maintain a normal sleep cyle but it is impossible, even with sleeping pills, and after a night of those sleep parlyis exisodes I would rather just get up!

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  4. Myth - I so feel for you - definitely bring it up with your neurologist and see a specialist if you need to. Having them that often sounds like me - not that I'm saying you are narcoleptic as there could be other reasons and I'm no doctor.

    My neurologist still up until last month still kept pushing a normal sleep routine. I met with my sleep (narcolepsy specialist) doctor and she said it doesn't work well with narcoleptics and forcing it sometimes doesn't work and they suggested since I'm currently on disability to stop trying to force it. To schedule naps during the day and then stay awake at night if I need to - as a night owl - or when I wake up in the middle of the night and can't sleep to stop forcing it.

    Then saw my neurologist and she agreed with the assessment and put in my plan to stop trying to force a normal sleep cycle because one it may not work or help and two because it was stressing me out even more.

    I hope you find answers. AND I am so glad (SO sorry for you) to hear that I am not alone. Thank you for that.

    Elizabeth

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  5. Elizabeth,

    Thanks for blogging! So many of us have to search the internet for clues about problems we are having, and your posts are sure to help people!

    I just wanted to share with you the story of my husband's chronic migraines and narcolepsy. Every person is different, but I feel obligated to share our story much like you share yours.

    He suffered from chronic migraines for 6 years and was also diagnosed with narcolepsy after a sleep study in the 5th year. We realized that he had narcolepsy for a while before that, but we just didn't recognize it (falling asleep in soup like you talked about... we had the same idea.) They tried to put him on a drug for narcolepsy, but due to the reactions he had to all of the migraine medications we had tried (severe depression, suicidal thoughts...) we decided not to go that way.

    I started searching for natural home remedies for narcolepsy on the internet and saw many recommendations. One connection that I found between narcolepsy and chronic migraine was celiac disease (gluten intolerance). I convinced him to get tested and try a gluten-free diet. Within a week, the narcolepsy had subsided! After two months, the headache he had had for 6 years FINALLY went away! He didn't have any of the "usual" signs of celiac disease, but apparently many people don't.

    I know every person is different, but I am SO very thankful to other people that shared their stories about migraine, narcolepsy, and other symptoms of their celiac disease. I would urge you to talk to your doctor about it and get a blood test done. Try a gluten-free diet for a month and see what happens!

    I hope you find what is causing these awful problems! I know it is horrible to deal with and that it hurts the people who love you to see you in pain. Good luck!

    Ashley

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  6. Hi, I have narcolepsy too and I noticed that you're a cpa. I was wonder if you can tell me how you manage to study and finish within the 18 months period. I'm struggling and I'm exhasted. I don't take any medicine and I find that I'm always falling asleep. Need some advice.

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  7. I know this is an old post, but wow!! This sounds exactly like me. I am definitely going to ask my dr. about narcolepsy @ my next neuro appointment. Thank you so much for sharing your story ;)

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