Help! Similar Stories? Undiagnosed and Tired of Being Tired

I’m a 26 y/o female…my psychiatrist recently referred me to a neurologist suspecting narcolepsy. (Diagnosed depression, anxiety, and OCD)

I’m just wondering if anyone ended up with a diagnoses involving a sleep disorder with a similar story…?

Warning: :crazy_face:

I’ve had constant daytime sleepiness that’s only been getting worse over the past couple years-I’ve seemed to have hit a personal max on it in the last year though it’s been slowly getting worse for about 6-7 years now. This is in addition to the inability to concentrate on words/focus -it’s like I know the words but I can’t put them all together in a sentence to make sense- brain fog, and overall feeling like I’m in a dream most of the time.

Generally, it takes me a while to fall asleep (though, interestingly enough, I’ve 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 I’ll fall back asleep…

I’m a psychopath in the morning, too…I remember my family always teasing that “I’m not a morning person”, but this is something different; I’m so aggressively angry it’s like I’m a different person. I could truly hurt someone just for saying “good morning” before an hour after I wake up. :face_with_symbols_over_mouth: It’s 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 to…well…college 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 I’ve been told I’ll 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 nothing…in addition to randomly talking in my sleep…and I do not recall any of it.

Another interesting tidbit…although I sleep so hard I don’t remember it at night, my naps during the day are cRaZy. I’m always half in and out of consciousness, lucid dream frequently, and have vivid dreams I remember and wake directly out of. It’s very fragmented and all over the place.

One time I had a dream that my fiancé 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 thing…

I also had this…moment? Idk what to call it :sweat_smile: when at a work dinner it was like I was conscious but not conscious…like I was physically following the conversation between people at the table with my head and nodding and smiling, eyes open, but I wasn’t there. Then a few seconds later I snapped to and realized I had NO IDEA what the conversation had moved on to…no 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:
What’s 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 couldn’t differentiate between dreams and reality anymore.

Anybody have any similar stories/experiences or diagnoses? I’d 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.

I’ve had low serum ferritin (around a 7) treated with EZFE 200mg for over a year…it won’t really get above 30-40-I assume because of the PPIs I take for stomach ulcers.

I have Sleep apnea and I also have anxiety. From what I been reading Sleep Apnea causes a number of other health ailments including heart disease or heart issues. I’m guess the longer you are unaware of the sleep Apnea the more health problems come on. Good luck with this and thanks for sharing your story.

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Wow I am so sorry to hear you are going through all this. As a long time sufferer of sleep apnea and some other issues associated I can identify with some of your story. I have learned that once you start treatment that if you stick with it you will find over time that things will get better. To learn more about the connections between sleep health and other conditions go to: https://www.sleepapnea.org/sleep-health/sleep-and-comorbid-conditions/ I wish you luck and thank you for sharing.

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Thank you both for your responses! My mother has sleep apnea (bad), so I definitely do not wish the journey you have been on :confused: I do see a rheumatologist next week and the neurologist in about a month, so hopefully I can get a diagnosis soon! I just want some type of resolution so I can have an idea of what path to take from here :sweat: with absolutely no idea, everything seems so “in the air” and unreachable. I keep thinking “I’m only 26! And have no children! Why on earth do I feel like this??”

CChemist,
I can relate on several things. 1st-being tired. OMG tired. All my life! I can sleep…forever! My favorite saying is “if sleeping was an Olympic sport, I’d have a gold medal!” I Sleep long and hard. I sleep so hard I quit breathing when I sleep. I have mixed sleep apnea. Mostly central apnea. I’m on BIPAP autoSV for it. I also have had a problem with low ferritin. My sleep study showed restless legs and they think that can be caused by low ferritin. It took YEARS to get it up to normal range but for the last 6 months it’s been too high so now I stopped my iron pills. Add anxiety to the mix along with ADD (the inattentive type). I relate to the zoning out thing; mine is not severe but I do miss things and people get upset with me “I told you…xyz” and of course that makes me doubt myself. Getting my ferritin level back to normal hasn’t helped my ADD any. I sleep very hard and don’t even notice the restless legs, but once I wore a hole in the sheets down near my feet so I’m thinking that they are correct in the restless legs diagnosis. I also have dysthymia which is “slightly depressed over your whole life without any major depressive episodes”. Sometimes I feel like such a project…

Project is definitely the word I would use lol. I just saw a rheumatologist that said I have Sjogrens Syndrome and elevated CRP but didn’t address anything symptom wise and just said to come in every six months to check on my liver and kidney function…so, cool. Now I have one more diagnosis and still no relief :roll_eyes: all of this is really wearing me down. Did you get a sleep study for the apnea diagnosis?

CChemist,
I’ve actually had 3 sleep studies in the last 5 years. The 1st one they diagnosed me with “prominent mixed sleep apnea”. which means have some central and some obstructive apnea. 83 events per hour. They put me on CPAP and after 4 years of adjusting pressures my AHI was still not in the acceptable range so I had another sleep study(Aug2018), they adjusted my pressures for the umpteenth time and my AHI was worse, so I saw a pulmonologist who ordered ANOTHER sleep study(Nov2018) and at that time the problem was mostly central apnea so they put me on the BIPAP autoSV. So far my numbers are looking good but the newfangled machine has a smaller water reservoir in it and it runs dry during the night and the heater shuts off. I wake up with cold dry air blowing up my nose. That is NOT pleasant. I can’t seem find a solution for that, but I’m working on it. That’s another project…lol.

It’s good you have appointments lined up hopefully you will get the resolutions you are looking for. In the meantime to learn more about sleep apnea go to: https://www.sleepapnea.org/learn/sleep-apnea/ also to learn more about the connections between sleep health and other conditions: https://www.sleepapnea.org/sleep-health/sleep-and-comorbid-conditions/ good health and better sleep.