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Sleep doctors diagnosis

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#1 cmanbrazil

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Posted 30 June 2013 - 02:20 PM

The doctor calls me in the office, sits me down and goes over the sleep study for about five minutes and tells me I have Narcolepsy.  I thought my Sleep Apnea machine had a problem.  I really wasn't expecting to hear Narcolepsy although I knew there was some issues with my day study.  I thought I was tired because of Sleep Apnea.  

 

I was in shock.  The doctor asked if I had any questions.  How could I when I thought all Narcoleptics fell asleep mid sentence, and couldn't drive?  I don't fit that description.

 

So he gives me a prescription for Nuvigil and Xyrem and sends me on my way.  It didn't take long for the Xyrem people to start calling anxious to get me set up on their drug that wasn't available at my local pharmacy.

 

So I called and asked for another doctor.  He was nicer but had little else to offer more than the drugs they prescribe.  I now and waiting to work with  new neurologist. 

 

I would like to ask people here do they have a doctor that teaches them how to live with Narcolepsy? or do they just prescribe medicines and send them on their way?

 

My biggest issue is how to deal with brain fog; staying alert during meetings; diet; focus; fighting to get out of bed, etc.  

 

Since I refused Xyrem because cost was so high and Nuvigil turned my life upside down, I am back to square one.  My best drug is Asphalt 7 racing game on my iPhone.  It does better than caffeine most of the time.  The only problem is I get lost playing it and can't get back to work.

 

Without Narcoleptics speaking out about their symptoms I would not believe I have narcolepsy.  However, after reading posts on hear I am sure I have Narcolepsy.



#2 ApparentlyNarcoleptic

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Posted 05 July 2013 - 04:59 PM

I sympathize with your surprise.  I, too, was completely shocked and had the same misconception about narcolepsy.  When my sleep dr mentioned that a lot of my symptoms sounded like narcolepsy I immediately made him explain.  Suddenly a lot of my life for the past 10+ years started making sense.  We did my overnight and daytime studies and it was confirmed.  I definitely have narcolepsy.  I still kind of don't believe it.  I'm on xyrem, still trying to find the right dose and get my body adjusted.  Tried nuvigil for two weeks, spoke to my dr and told him I was stopping because I went crazy.  As of today we discussed me trying it again at a different dosage.  If it doesn't work this time we'll re-evaluate and try something else.  Other than that, he's given me some small tips about dealing with cataplexy (which is actually the least of my N problems).  I've found more information from other PwN on the internet, just doing my homework and asking questions.  I live on lots of coffee and try to keep myself stimulated by things I enjoy.  Lucky for me I love my job (most days!) so unless it's really hot or I've missed my afternoon coffee I can manage to stay awake.  Oddly enough, it seems to me that most PwN are big nappers and I HATE naps.  They just ruin me for the rest of the day, make my brain fog SO much worse, and I end up very cranky.  Other people find that scheduling naps in during the day are very helpful.  I'm the opposite.  It's all about knowing yourself and what works best for you.  I hope you find a way to cope!



#3 collegewriter

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Posted 11 July 2013 - 02:16 PM

I had been seeing my neurologist (also a sleep specialist) for migraines for a few years prior to my narcolepsy with cataplexy diagnosis.  He would tell me all I needed to know about medications and side-effects, but that was it.

 

It wasn't until I started pushing him for more information on treatments other than just medication that I realized he knew many more useful strategies.  He began teaching me about different diets, exercises, light therapies, and even temperatures to keep the house at during different times of the day.  These small lifestyle changes in addition to well managed medication have worked wonders for me.

 

As simple as it sounds, have you tried asking him these sorts of questions?  I doubt my doctor would've ever brought them up if I had not asked him specifically about them.



#4 sk8aplexy

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Posted 11 July 2013 - 03:24 PM

Hmm, collegewriter, that's an interesting one. 

Could you describe the different temperatures / times of day a bit?

I'd guess perhaps it's something like keeping the house 'hotter' during the day and 'cooler' during night sleep.?

Thanks in advance.



#5 Megssosleepy

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Posted 11 July 2013 - 03:45 PM

My doctor didn't tell me much even when I tried asking questions.  I had a hard time with the adderall and he basically said there isn't much else we can try... you can try ritalin again (no! that made me want to off myself).  I am going to be meeting with a new doc on Monday and hopefully he will have more insight for me?

 

I find the best place to get info is on here or reading different articles or medical journals. 

 

Xyrem usually gives you a big discount on the copay... originally mine was $165, but they gave me a discount and its only $35 a month.  Were you unable to get a lower co-pay?  I have a love hate relationship with the stuff, I love it because I am no longer in a deep fog begging for sleep anymore and hate it for less important reasons. 



#6 nursemanda

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Posted 11 July 2013 - 07:00 PM

Welcome to the world of narcolepsy. It's not fair that we have this disorder but at least now you have a whole bunch of people who know you're not lazy, are here to sympathize with you and give advice. :-)

Be careful. Just because not everyone pisses out while driving doesn't mean it can't happen. I totaled a car and lost 24 hours worth of memories! Yuck concussion

#7 Ferret

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Posted 11 July 2013 - 09:39 PM

 

It wasn't until I started pushing him for more information on treatments other than just medication that I realized he knew many more useful strategies.  He began teaching me about different diets, exercises, light therapies, and even temperatures to keep the house at during different times of the day.  These small lifestyle changes in addition to well managed medication have worked wonders for me.

 

 

 

Puhleeze share your information! If a lifestyle change worked for you then maybe it will work for some of us. Anything and everything is worth a try.

Congratulations on your successful handling of a bad situation....now SPILL! (please)



#8 nursemanda

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Posted 12 July 2013 - 01:34 AM

^ I agree, please share! I slept 18 hours yesterday despite meds :-(

#9 collegewriter

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Posted 12 July 2013 - 07:24 AM

Hmm, collegewriter, that's an interesting one. 

Could you describe the different temperatures / times of day a bit?

I'd guess perhaps it's something like keeping the house 'hotter' during the day and 'cooler' during night sleep.?

Thanks in advance.

 

I mean it sounds so simple, but that's exactly it.

 

I have my thermostat set to 71 degrees from 8 pm - 4 am (my sleeping hours).  From 4 am - 6 am (my shower & breakfast time) the temperature is set to increase to 73 degrees.  From 6 am - 6 pm (commute/work) the temperature is set to 75 degrees.  So when I get back home the house is a little more hot than I prefer it, but it keeps me awake better.  And finally from 6 pm - 8 pm I have the temperatures set to 73 degrees to get my body prepared to sleep.

 

I've noticed my body has always been reactive to temperature changes, so maybe this will help others too.

 

Keep in mind, it took me many months to find what worked for me.  These temperatures I use are only for the hotter months in Virginia, while in the winter I use the same schedule but I subtract three degrees for each time of day.

 

On top of this helping regulate my sleep schedule, it also helps with the electric bill  :)



#10 Megssosleepy

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Posted 12 July 2013 - 10:37 AM

This reminds me of something Hank said awhile back.

 

If you want to sleep your feet/hands should be warm and the body cooled.  <-- before bed soak feet and hands in warm water/heating pad and drink some ice water. 

 

If you want to be more alert your feet/hands should be cool and your body warm.  <-- this is great for car rides AC on and heated seats on, works like a charm, or drink something warm.



#11 Ferret

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Posted 15 July 2013 - 01:01 PM

Collegewriter...still waiting for you to let us know about the other tips that your Doctor gave you besides the temperature of your house.

Please and Thank You.



#12 NetiNeti

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Posted 16 July 2013 - 04:22 PM

There are actually studies concerning skin temperature and daytime sleepiness. Google scholar it :lol:



#13 Ferret

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Posted 16 July 2013 - 10:16 PM

I did and I read them.

I'm enquiring about the OTHER tips that he said his Doctor gave him (diets, exercises and light therapies)



#14 BrainCloud

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Posted 16 July 2013 - 10:39 PM

I'm curious as to the diet aspect of it...if there's something I should eat/shouldn't eat I'd love to know!



#15 doinmdirndest

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Posted 17 July 2013 - 07:00 AM

what meds are you and your doctor working with now? your wall pic appears to be 30 mg ir Adderall pills. I take 9 of them a day, w/lisinopril to keep my bp down.

#16 Hank

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Posted 17 July 2013 - 08:24 AM

The BP medication makes sense- I was wondering how your heart can withstand such a high dose of Adderall.

When your tolerance adjusts to your current dose, will you continue to increase your dose in the future? The downside of medications that build a tolerance is that you continually need a higher dose to achieve the same effect.

My concern for you is for the long term. It sounds like you have had a difficult time getting your current 9 adderalls/ day prescribed. Do you have any plans to address your significant tolerance or do you plan to keep increasing the dose and increasing the BP meds accordingly? Maybe the short term is worth the trade for you and you will just deal with the future when it happens- not sure where your thoughts are on this.

It just seems that eventually you will require a dose that no physician will be willing to prescribe or your body will just be unable to handle. To use an analogy, I am concerned your train will run out of tracks eventually. Do you share this same concern or are you ok as long as there are tracks right now?

#17 doinmdirndest

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Posted 18 July 2013 - 07:44 AM

the fact is I go to Berkeley and titrate up, using non-medical resources I have access to, of a product currently abundant in high quality form, to about the = of 450mg/d Adderall. I think the details are relevant but if I include them I get banned again.

this has gone on for years. if I ever get an md to rx the 450, nothing will be different about my treatment except imprecise doseaging from a med in pure form like glass shards will then end.

bp still 120/70 or so.

I can't seem to get research to take any interest. there is a man medicated thusly for about a decade-and its well tolerated. youd think they would want to discover why/how.

an attempt is under way to return to the practice where 300mg/d Adderall was begun, hopefully he'll titrate up. remote is the probability.

the worst thing about my sit. is the expense. its breaking our budget. yet we've managed so far.
I expect I could need and consume the = of 6-700mg/d Adderall in my 70's w/it still well tolerated.

and after my journey has ended only God and I will be aware of it's being possible. there is likely a way to make it possible for others. I will pursue it evermore when I can, I think it may be futile w/o md providing entire regimen. then a case study might be possible, this is probably the least that ought to be done. I've no sense of self-importance but i'm aware of the facts. other than that i'm a gnat on the big 4 lane highway of life and I know it.

at least i'm wakeful. i'm thankful for my strong constitution allowing it at 52.