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Afraid To Ask Doctor If I'm Narcoleptic


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#1 danb

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Posted 01 March 2013 - 09:08 AM

New to the board.  Sorry if there is a sticky about this i missed.

 

Long time "sleepy" person.  History of autoimmune disorders (rheumatoid arthritis, hearing loss, and hives).

 

6 months ago I got my doctor to prescribe me Adderall 20mg XR morning and 10mg IR night for fatigue.  This dose is not helping all that well, and seems to be on the low side for Narcolepsy from what i've read.

 

Last week i read that Narcolepsy is a result of the immune system attacking Orexin by mistake.  That is the same thing that happens with RA, and the rest of my immune disorders.

 

I would like to ask my doctor to test me for Narcolepsy but he has a hard time listening to me when i suggest something.  

 

I have a lot of symptoms of N including the numb, tingling muscles when :   sleeping, awake, nervous, excited, laughing too hard, or getting startled.  The need to sleep 3 times a day for at least 30 minutes (even on Adderall).  Falling asleep and dreaming within 2 minutes.  A lot of twitching and yelling when dreaming.  People try to wake me up when shaking me but they can't.  I can feel them shaking me but cannot wake myself up, and can think "why can't i wake up?".  I have also fallen asleep driving on many occasions, with one accident, but i'm afraid to mention that to him.

 

I have written all this down.  I have been having these symptoms for at least 10 years.  I have never told him about it because i thought it was normal for everyone, or that i was just a deep sleeper, or tired from the other diseases.  The other diseases are all in remission now, but the tiredness is still a huge problem.  

 

I have had a sleep apnea test done which was negative.  I have been anemic in the past but when it has been fixed the tiredness does not lift.

 

Can someone please give me some advice on how to approach this with my Doctor?



#2 DeathRabbit

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Posted 01 March 2013 - 10:31 AM

If I'm afraid of coming across as over demanding or a hyperchondirac, I usually resort to manipulation. Basically, I just ask leading questions, and make vague hints and suggestions, while pretending to be ignorant. In other words, I try to help the doctor reach the conclusion that it could be X without specifically asking "Hey, do you think I have X?" . Most doctors tend to get that glazed over look when you suggest diagnoses or courses of treatment like "Oh, just great, another WebMD asshole."



#3 danb

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Posted 01 March 2013 - 12:02 PM

Haha, yeah exactly.    

 

Maybe I should just show him the symptoms i wrote down?  

 

I have a primary care doc and an immunologist.

 

Does anyone know if the dosage of Adderall for narcolepsy is based on my weight?  Or is it a standard dose?  I'm 38 male 140lbs.



#4 DeathRabbit

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Posted 01 March 2013 - 12:14 PM

Stimulants have vastly varying effects. There's no real standard other than to just search for the appropriate dosage it seems. 20mg of focalin XR for me, caused episodes bordering on hypomania, IE: I wanted to smush everyone's face in for simply existing. Eventually, it got to where my body had a paradoxical reaction to stimulants, IE: I would take my focalin and 30 minutes later I'd feel like the creeping death. I'd have like nervous, neuromuscular energy, but my thoughts turned completely to sludge. But I know others who can pop that same amount and not feel one jot of difference. And of course, in cases of ADHD, they seem to have a calming effect. One of my friends who's hyper and borderline asperger's got prescribed adderall after struggling with apnea and it turned him into a Zen master, he was so calm. So yea, you're still playing around in uncharted territory, and, here, there be monsters.

 

One thing you might want to consider at your age is the risk of hypertension. Adderall tends to make one's blood pressure skyrocket, so it might be worth getting a cuff to monitor your blood pressure while you experiment with dosing. Of course, if there's no history of heart disease in your family, it might be a moot point. But you definitely dont want to wake yourself up jsut to have your heart go pop.

 

I agree, too, with showing your doc the symptom list. Like I said, if they reach the conclusion or they at least think they did, it's going to go a lot better for you. Good luck.



#5 danb

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Posted 01 March 2013 - 12:43 PM

That's strange...  What you described is exactly what Adderall does to me...  Calms me down.  I've never been hyper or tested for ADHD though.  I have noticed that my thoughts are more on track.  Before starting I would think about 3-4 different things at once.  Now just 1 train of thought.  There is a history of ADD in my family.  I never had any symptoms before 25 yrs old, though.

 

I do notice the Adderall does kind of backfire sometimes.  I noticed this the other day, which made me wonder if it was the right dose.  For the most part it helps, but it seems like 1-2 days a week when i first take it in the morning i become a vegetable for about an hour.  Like I just drank a couple beers or something, weird.

 

Yeah the hypertension is really strange with me.  i never get it from anything, ever, not even cold weather.  I also take prednisone.  My dr can't figure out why i haven't gotten high blood pressure from pred and adderall.  I was also on cyclosporine and the other two at one time.  Cyclo is supposed to cause the same thing.  Still low blood pressure.  Doesn't move at all.

 

I don't want him to think i'm trying to get more Adderall by asking him to do a sleep study for N.  I just want less fatigue, and the weird, almost-passing-out-tingling-numb-falling-asleep thing gone too. 

 

Do you think its worth mentioning it happens when driving?  Or will he cut up my license and throw me in the looney bin?  j/k.



#6 munky

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Posted 01 March 2013 - 10:38 PM

First thing I'm going to say is, if your doctor doesn't listen to you when you tell him there's a problem, you need a new doctor. Now, I'm not saying if you go in and tell your doctor, "I have Narcolepsy!" he should immediately agree and give you whatever meds you want. Rather, if you go in and tell your doctor that you're suffering extreme daytime sleepiness, that you have to take several naps a day despite getting a good night's sleep (where "good night" is considered 7-8 hours, without taking anything else into consideration), and that you've even fallen asleep while driving, then your doctor should be taking that seriously. He should immediately either refer you to a sleep specialist, or order further testing himself.

 

And, no, your doctor can't take away your driver's license. He might, as my doctor did, suggest to you that you limit long-distance driving, but the only people who can take away your license are the DMV (or local equivalent). Laws, of course, vary from state to state, but I believe that if you have a medical condition that might make it dangerous for you to drive, as long as you are under medical care for that condition the state won't take away your license. And I have no idea how the state is supposed to find out about the medical condition in the first place ... I suppose doctors are required to report certain specific things. All I really know is that, as far as I can tell, there is no such thing as losing your driver's license for medical reasons in the state where I live. The only thing I've been able to find that's even remotely related is that people applying for a CDL have to pass a medical exam, and I've even gone through the state's motor vehicle and traffic laws. I am, of course, not a lawyer.

 

Even if you did end up losing your license ... if you wrecked your car because you fell asleep driving, and you've fallen asleep driving more than once--and you do nothing about it--should you really be driving? Even before I knew I had narcolepsy, I have never driven when there was a risk I might fall asleep. I'll take a nap--even in my car, in a parking lot, if necessary--before I leave. And if I start getting tired while I'm already behind the wheel, I stop. I pull over and either take a nap, or take a walk. And, yes, I've even done this on the way to work. There is no place in the world that I need to be so badly I'm willing to risk my life and the lives of others to get there.

 

Talk to your doctor. Tell him everything. And if your doctor won't take it seriously, find another doctor.



#7 Gemini730

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Posted 02 March 2013 - 09:20 AM

I completely agree with Munky on the doctor issue....there ARE doctors out there who will sit down and take the time to really listen to what you are saying.  Sounds like you would definitely benefit from someone who takes more of a collaborative approach rather than an expert approach.  I struggled for years with trying to get my point across to various doctors about just how difficult my days were.  I took sleep meds, I took B-12 shot, etc.  Two things I realized after being diagnosed with N., using the word "sleepy" is more accurate than "tired".  And, after trying various "sleep meds", I finally said to my primary care doctor, who is excellent by the way, that if we can't improve my days with sleep meds, can I take something to allow me to function during the day?  I was very firm and said that it isn't simply that I get tired, I get to the point where I CANNOT get through the rest of my day without sleeping.  That's when he pulled out a sheet of paper and started asking me questions I later realized was the Epworth Sleepiness Scale.  My score then alerted him to the possibility of N.  I've read the posts about meds.  Several of the reactions folks have had to stimulants, I've actually had to the awakefulness promoting drugs--Nuvigil and Provigil--they did not work for me...I was irritable, agitated, jittery.  I then went to Adderall, which worked really well for me.  The neurologist switched me to Adderall XR which did not work at all, so I went back to the regular Adderall.  I now take 60-80 mg of Adderall (20 mg doses) each day.   You had asked about weight, etc.  I'm a 40 year old female and I weigh about 120 lbs.  I have always had low BP so I am lucky...my BP has been monitored and I have done well on this dose.  I suggest you ask friends, family, etc for MD referrals.  You may also be able to contact a sleep center directly (if you have one nearby) and get direction from them.  I hope this helps!



#8 danb

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Posted 02 March 2013 - 09:58 AM

Ok thanks guys.  I see my immunologist on the 15th and pcp on the 6th, and endocrinologist on the 5th.  Got my bases covered i think. :)

 

I'm going to show all of them the entire list of symptoms, just in case.  I'm pretty sure the Endo won't care, but the immo and pcp will.

Strangely enough i've read recently that prednisone has helped some with N, but for me it isn't helping and i'm getting some horrible sides from it as they keep increasing the dose.  

 

My pcp tried Modafinil once but it made my hives worse.  Which also makes me think that i have N because I know that when Orexin fails to wake people up, Histamine is turned on.  Modafinil works on histamine and dopamine receptors.  Histamine causes hives.  So Modafinil increased my hives because it increases histamine.  Plus any med that makes me tired, like anti-histamines, make the hives worse, instead of better, which would mean my body is fighting to stay awake by releasing more histamine. 

 

I believe my body is trying to keep itself awake by cranking up histamine, which accidentally causes severe hives.  The only reason i know of the histamine-wake-fullness connection is because i have 3 years of a psych degree.  I'm unsure if i should mention this "histamine-narcolepsy" idea to them?  What do youse think? :)

 

The adderall works better than the prednisone for the severe hives.  Addy @ 20mg  >  Pred @ 48+mg.  Its crazy.  Much less sides on the addy as well.  No insomnia either.  Lots of insomnia on 48+mg of Prednisone. 

 

Sometimes i will get an attack of hives late at night after the Addy has worn off.  I can take another 5-10 mg and it clears the hives up AND i can sleep fine.  Its weird...  Nothing else does this at all.  Not even close.



#9 DeathRabbit

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Posted 05 March 2013 - 01:28 PM

Actually, your histamines would probably be low, thus causing the sleepiness I do believe. From what I understand, the Orexin system regulates histamine production. Speciically, IIRC, we don't get enough histamines at H1 and H3



#10 danb

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Posted 05 March 2013 - 02:31 PM

Hmm, interesting.  Seems like its not related then.  Could just be two different autoimmune reactions like when i had rheumatoid arthriits and hearing loss.  Now maybe hives and narcolepsy.

 

See my pcp tomorrow.



#11 DeathRabbit

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Posted 05 March 2013 - 06:50 PM

Well, it could just be the change in histamine levels. The body is more sensitive to change than it is any given state. If you stay on it longer, it might improve, although I would understand if those symptoms were too much to wade through. I wonder if immunosuppressants would help you out.



#12 danb

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Posted 05 March 2013 - 07:20 PM

Yeah i take 2 immunosuppressants, Prednisone and Cyclosporine.   Both at the max dose which doesn't cause me to disintegrate.  It does an ok job for the most part but there are still "flares" of hives that nothing reduces, except Adderall .  Its super weird.  

 

I'm kind of becoming a national sensation...  Mass General H flew in some peeps from the Mayo clinic to have a crack at it.  They were stumped too.  Oh well.  



#13 DeathRabbit

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Posted 05 March 2013 - 08:45 PM

I suppose your thyroid has been checked. My late grandmother had some sneaky kind of hypothyroidism which caused it to take random dips, but whenever they checked it at the doc it was fine. I think they ended up doing some test they hardly ever do that caught it. Just like me and my low T. That wasnt caught for 3 years, just because it's not standard procedure to chekc T levels in young males. Doctor's just don't understand the process of elimination. They're arrogant enough that if they cant possibly wrap their head around you having X, they won't even bother testing for it, even after all other tests are exhausted.



#14 danb

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Posted 05 March 2013 - 10:14 PM

That's what i've been wondering for a long time.  I notice that the response of my heart and adrenaline sometimes is pretty extreme.  Meaning ultra relaxed to ultra amped.  Pretty much if i'm not in "adrenaline mode" i'm asleep.

 

I had similar problems around 18.  Was put on growth hormone shots.  Explained that to 4 different immunologists.  They all dismissed it.  Said based on blood tests my Thyroid looks fine.  

 

I don't believe it though, because some of my symptoms are exactly the same as thyroid or parathyroid dysfunction.  I finally convinced my PCP to send me to an Endocrinologist.  Ironically back at MGH.  

 

Mind you, this is 12 years later, been disabled for 8.  Sigh...

 

So does Adderall, or other stims, help you with the thyroid problem?



#15 DeathRabbit

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Posted 06 March 2013 - 06:38 PM

That's what i've been wondering for a long time.  I notice that the response of my heart and adrenaline sometimes is pretty extreme.  Meaning ultra relaxed to ultra amped.  Pretty much if i'm not in "adrenaline mode" i'm asleep.

 

I had similar problems around 18.  Was put on growth hormone shots.  Explained that to 4 different immunologists.  They all dismissed it.  Said based on blood tests my Thyroid looks fine.  

 

I don't believe it though, because some of my symptoms are exactly the same as thyroid or parathyroid dysfunction.  I finally convinced my PCP to send me to an Endocrinologist.  Ironically back at MGH.  

 

Mind you, this is 12 years later, been disabled for 8.  Sigh...

 

So does Adderall, or other stims, help you with the thyroid problem?

Sounds like it's time to get angry. Long past time. If you need to, bring someone along with ya, but it's time to kick some ass if you've been dealing with undiagnosed issues for this long...



#16 danb

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Posted 06 March 2013 - 07:47 PM

Yeah didn't get a chance to mention the narcolepsy today.  But he did up the dose to 30mg XR based on the fact that Cyclosporine can cause fatigue.  I was surprised with that.  So one in the win column.  weehoo! :)

 

See the Endo tomorrow.  Hoping i can actually get there.  My refill script of Adderall was out of stock today, haha.  Ironic.  Its supposed to be in CVS tomorrow by 10:00.  Endo appt is at 11:00, 2 hours away.  

 

At least no chance of falling asleep on the way to the endo, since i'll have to drive 110 mph to get there on time. :)

 

Going to bring a print out of my endocrine tests since 18 yrs old.  Show him the low scores, which were never followed up.  Feeling confident...  



#17 Bobbie

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Posted 10 March 2013 - 06:36 AM

Do you know how many conditions are under the heading of "Auto Immune Disorders"?  Well, there's quite a few and none of them are actually related to each other.  So, just because you have several conditions that are has nothing to do with the possibility you might have Narcolepsy.  Being sleepy isn't necessarily a clue either.  Now, falling asleep when you weren't sleepy and didn't know you were going to fall asleep until you wake up best describes Narcolepsy.  That's why they call them "sleep attacks" because you never knew they were coming.  You need to get to a sleep specialist where they can give you a sleep latency test to diagnose exactly what you have.  The sooner, the better before you resume driving.