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Old 06-07-2019, 07:13 PM
 
15 posts, read 697 times
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Iím a 26 y/o femaleÖmy psychiatrist recently referred me to a neurologist suspecting narcolepsy. (Diagnosed depression, anxiety, and OCD)

Iím just wondering if anyone ended up with a diagnoses involving a sleep disorder with a similar storyÖ?

Warning: 🤪

Iíve had constant daytime sleepiness thatís only been getting worse over the past couple years-Iíve seemed to have hit a personal max on it in the last year though itís been slowly getting worse for about 6-7 years now. This is in addition to the inability to concentrate on words/focus -itís like I know the words but I canít put them all together in a sentence to make sense- brain fog, and overall feeling like Iím in a dream most of the time.

Generally, it takes me a while to fall asleep (though, interestingly enough, Iíve been able to fall asleep in about 1/3 the time since starting adderall - maybe because it works to prolong REM latency?). Once asleep, though, I can seriously sleep FOREVER. Also, it seems like I have a 50/50 chance of waking up in the morning either in an extreme panic (heart racing, jumping out of bed) or literally either having to roll myself out of bed/count to three and violently jump up or Iíll fall back asleepÖ

Iím a psychopath in the morning, tooÖI remember my family always teasing that ďIím not a morning personĒ, but this is something different; Iím so aggressively angry itís like Iím a different person. I could truly hurt someone just for saying ďgood morningĒ before an hour after I wake up. 🤬 Itís always been that way.

I used to take naps every day after school and even through college would skip classes to nap (just attributed that toÖwellÖcollege lol), but even as a kid half of our family pictures include grumpy ole me standing to the side LIVID because I was tired.

Also, since childhood Iíve been told Iíll have these episodes where I sit straight up in bed, eyes completely open, and talk gibberish-counting off numbers, etc-then violently lay back down like it was nothingÖin addition to randomly talking in my sleepÖand I do not recall any of it.

Another interesting tidbitÖalthough I sleep so hard I donít remember it at night, my naps during the day are cRaZy. Iím always half in and out of consciousness, lucid dream frequently, and have vivid dreams I remember and wake directly out of. Itís very fragmented and all over the place.

One time I had a dream that my fiancť was grabbing my leg trying to wake me up (I was in the same position, clothes, everything that was physically accurate in real life) and I remember actually kicking at him, only to snap to consciousness at the movement and realize I had really been asleep/dreaming the whole thingÖ

I also had thisÖmoment? Idk what to call it 😓 when at a work dinner it was like I was conscious but not consciousÖlike I was physically following the conversation between people at the table with my head and nodding and smiling, eyes open, but I wasnít there. Then a few seconds later I snapped to and realized I had NO IDEA what the conversation had moved on toÖno idea what they were talking about. (This was at about 8/9 pm while taking adderall XR 30mg at around 7 am)

Now for the drugs:
Whatís really interesting is that adderall has seemed to help me fall asleep a little faster (although still zoning out a lot / brain fog / always tired), but SSRIs -I think I went through every available SSRI/SNRI/tricyclic antidepressant before trying stimulants-always made my dreams SUPER vivid. Like I couldnít differentiate between dreams and reality anymore.

Anybody have any similar stories/experiences or diagnoses? Iíd love to hear them!!

Side note:
Developed migraine w/ aura about a year and a half ago.
Pretty frequent headaches starting about six months ago in left temple, sometimes tingling/numbness radiating from temple down jaw/into ear.

Lab tests showed a positive ANA / SS-A antibody of 3

Constant sinus issues-have not subsided in 2 years now.

Iíve had low serum ferritin (around a 7) treated with EZFE 200mg for over a yearÖit wonít really get above 30-40-I assume because of the PPIs I take for stomach ulcers.
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Old 06-07-2019, 07:31 PM
 
Location: Southern California
23,049 posts, read 7,977,789 times
Reputation: 15037
You are young but still could be suffering with a very sluggish thyroid, I was but much older but thyroid issues can appear at a young age. I had to educate the psych I was seeing when I finally found it was thyroid that was causing havoc in my life.
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Old 06-07-2019, 07:48 PM
 
15 posts, read 697 times
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That was actually one of the first things they checked for — my TSH and T3/T4 were all normal ��

Edit: looking back, my TSH and T4 were checked, not T3; also, with a reference range of .54-1.24, my results were at a .86 (I also just noticed that biotin can result in false high free T4....at the time, my daily vitamins contained biotin. Perhaps I should have this re-checked?

Last edited by Cchemist; 06-07-2019 at 08:08 PM.. Reason: Incorrect Information
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Old Yesterday, 07:05 AM
 
Location: Surfside Beach, SC
2,128 posts, read 2,624,754 times
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Have you ever had a sleep study done? Also, read about REM sleep behavior disorder. What you describe sounds like a combination of sleep apnea and REM sleep behavior disorder, plus maybe some other things going on as well. I think you should have been seen by a neurologist a long time ago - glad you are doing that now and hopefully one that specializes in sleep disorders.
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Old Yesterday, 11:04 AM
 
15 posts, read 697 times
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No sleep studies so far; it took me this long to even get a referral and convince someone that I’m not simply depressed. I have read about that, actually! Though there seems to be so much overlap between that and narcolepsy/idiopathic hypersomnia/etc. I can’t really tell the difference. Hopefully the neurologist can shed some light �� this has gone on way too long and I absolutely hate constantly complaining but I’m missing out on so much of my life!
It’s also making me start to feel like a drug addict....how could my symptoms still be so severe while on a stimulant?? Anyways, sorry for the rant lol. Thanks so much for your comment!
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Old Yesterday, 11:11 AM
 
Location: Southern California
23,049 posts, read 7,977,789 times
Reputation: 15037
Quote:
Originally Posted by Cchemist View Post
No sleep studies so far; it took me this long to even get a referral and convince someone that I’m not simply depressed. I have read about that, actually! Though there seems to be so much overlap between that and narcolepsy/idiopathic hypersomnia/etc. I can’t really tell the difference. Hopefully the neurologist can shed some light �� this has gone on way too long and I absolutely hate constantly complaining but I’m missing out on so much of my life!
It’s also making me start to feel like a drug addict....how could my symptoms still be so severe while on a stimulant?? Anyways, sorry for the rant lol. Thanks so much for your comment!
I had good numbers for 10 yrs and all the doctors I saw kept telling me you are fine, you are OK, good numbers. The D.O. finally called in when I talked to him and got me on a theraputic dose of Armour thyroid and that's what I needed...We are NOT numbers like the modern docs all have us as. The older docs treated by symptoms. If you could find a doc to give you a theraputic dose of Armour or other desiccated support you could be in that same category. Naturpaths are good there, or an integrative MD. Lots of toxic drugs are not what our bodies need.


Then there is the MTHFR Gene which I know of one person who found out later in life she had this gene, and she struggled a lifetime with depression. Found higher dosing of methylfolate did the job in her life. Something to keep in mind, but I'd sure try a theraputic dose of desiccated thyroid....just my thinking from my years of experience. I could be way off base in your situation but this always comes to me as I struggled so long. And no help. And had good numbers all those years.

Getting to the doctor who KNOWS is so key.

Last edited by jaminhealth; Yesterday at 11:21 AM..
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Old Yesterday, 11:35 AM
 
15 posts, read 697 times
Reputation: 15
I think that’s what keeps tripping me up with doctors...they all seem to want to treat the symptoms but not the CAUSE. I’m not one to simply take medication to cover up symptoms without a definitive diagnosis. However, I will say that my psychiatrist (the main person that has requested all this lab work) is pretty good at judging the numbers based on “optimal” levels instead of simply using the range the labs deem to be normal. We’ve even discussed the curves of data they use to find these ranges and how it doesn’t accurately represent the population because outliers/etc can significantly skew the curve of “normalcy”.
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Old Yesterday, 11:54 AM
 
Location: Central IL
14,949 posts, read 8,344,731 times
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Quote:
Originally Posted by Cchemist View Post
No sleep studies so far; it took me this long to even get a referral and convince someone that Iím not simply depressed. I have read about that, actually! Though there seems to be so much overlap between that and narcolepsy/idiopathic hypersomnia/etc. I canít really tell the difference. Hopefully the neurologist can shed some light �� this has gone on way too long and I absolutely hate constantly complaining but Iím missing out on so much of my life!
Itís also making me start to feel like a drug addict....how could my symptoms still be so severe while on a stimulant?? Anyways, sorry for the rant lol. Thanks so much for your comment!
I agree that you need a FULL sleep study done - this includes EEG reading to get at your sleep architecture to examine REM sleep, etc. You're having a lot of issues that may or may not be due to being on Adderall and it may not even be the appropriate medication for your condition as it might not be diagnosed correctly.

I say "full" sleep study because they sometimes try to do a home study that doesn't include EEG if only sleep apnea is suspected. Try to get some better information about this.
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Old Yesterday, 12:12 PM
 
15 posts, read 697 times
Reputation: 15
Since the symptoms began long before I started the adderall, I do think that is unlikely. Though, perhaps it is exacerbating it in some way. Yeah, I’ll definitely insist on that! I guess I just always thought that since I can sleep so much/without interruption and only heard someone mention sleep talking or sitting up rarely that it had to be something else causing my sleepiness. I never would have thought that there was a potential problem with my sleep; after all, I can sleep all the time! Lol
Thanks for your help.
I do not see the neurologist for another month, so hopefully I can keep mentally pushing myself until then :/
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Old Yesterday, 12:29 PM
 
3,834 posts, read 1,624,194 times
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You have a positive ANA, so have you been thoroughly tested for autoimmune diseases? Many can cause sleep disturbance. You need to get to the bottom of that first instead of just treating the symptoms.
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