Pineal Cyst and Sleep Problems

[plynn]

My husband had an MRI done many years ago and they found a pineal cyst.  The doctor said they find these type of cysts in many people and that they cause no symptoms.  He has had a couple of MRIs since that time and the cyst has grown a little over the years.  He also has suffered with sleep problems.  I would like to know if sleep disorders are common in people that have pineal cysts.  Could it be possible that a pineal cyst could have in impact on the production of melatonin and cause sleep problems?  I realize that most neurologists say that these type of cysts do not cause symptoms, but how do they know that it doesn't have an effect on melatonin?  It would be interesting to know from people that have a pineal cyst if they also have sleep problems too.  

Thank you.

[Karen1307]

Pineal cysts absolutely can be symptomatic but are often dismissed because in the majority of cases they cause no problems, the text books say no and they are too hard to deal with. I have had surgery to remove mine as it was compressing my cerebral aqueduct and causing a multitude of symptoms. I had difficulty sleeping, taking several hours to fall asleep (never sleeping before 2am) and waking constantly. I still have issues with my sleep so I cant say the surgery has helped with this but it has only been 3 weeks so Im still recovering but Im optimistic :)

[Rose_E_Bud]

Hello Karen, I hope your recovery is going well.I'm a 33 yr old female  I recently discovered I have an 8mm. pineal cyst. Very sympomatic, headaches, nausea, tinnitus, sleep issues for yrs and an unexplained seizure in March. I am going to be seeing a neurosurgeon at OHSU (Oregon Health& science University) soon. I am very nervous and kinda scared of the procedure and wondered if you could give me any feed back from your surgery. Thanx a ton. Rosey

[Sofiamagdalena]

Hi. I do also have a pinal gland cyst. I have been told it is nothing to worry about. But that I should contact a doctor if I get any new kind of headache.
There is only a mm of space for my cerebrospinal fluid to flow between my ventricles. I have never in my life had an issues falling asleep. I can fall asleep whenever and wherever. Sometimes I am wondering if the cyst can have something to do with my ease of falling asleep.

[Sofiamagdalena]

Hi. I do also have a pinal gland cyst. I have been told it is nothing to worry about. But that I should contact a doctor if I get any new kind of headache.
There is only a mm of space for my cerebrospinal fluid to flow between my ventricles. I have never in my life had an issues falling asleep. I can fall asleep whenever and wherever. Sometimes I am wondering if the cyst can have something to do with my ease of falling asleep.

[Khundaray]

I just happened to see this discussion and I wanted to share that several years back (after studying numerous sleep disorder books) I came upon a match for mine.  It described exactly the effects of brain MRI's which in themselves render the pineal incapable of attuning to earth's WEAK magnetic field, which is necessary for the biological clock to function.  The MRI's emit enormous MEGA amounts of magnetic flux which in effect causes "pineal burnout".  

I myself, plus 2 other's I've come to know over the years didn't even have a cyst on pineal..... but after getting brain MRI's for a different reason... we developed exactly the same kind of sleep disorder.  With this type, periods of wakefulness keep getting longer and longer. And after many years one goes at least a week without being able to sleep  AT  ALL.

I also want to add that we all must use "common sense", figure things out, do research on our own, etc..... because the MD's are all overworked with little time to keep up with latest research, etc.  And chiropractors who know how to use kinesiology can be a more valuable resource.

[sleepysteph]

Hi,

I know that this post was from 7 years ago, but I am hoping someone here is still interested in this topic. I too was diagnosed with a pineal cyst and than later with narcolepsy. I really do think there is a relation and hope someone will do the research. I know that Narcolepsy is related to a lack of hypocretin in the hypothalamus. I read something about how outer stimuli has to go through a part of the hypothalamus to reach the pineal gland and aids in the production of melatonin. I wonder if the pineal cyst blocks the simuli at all. I am NO dr. Just a thought. If anyone ever comes up with any info on the topic I would love to hear it!

Thanks,
Steph

[moonagirl]

Hello! I also have a pineal cyst (8mm) and suffer from sleep problems, such as sleep paralysis and hypnopompic hallucinations upon awakening. I sometimes wake up at night and see a figure or a person standing by the side of my bed, or just feel a presence there and I jump up screaming, waking up my husband in not a fun way, lol... Once I saw a headless man walk out our bedroom. Apparently this is a problem in REM sleep, your brain is still dreaming when your body is awake. It is really scary and causes me to be scared of falling asleep sometimes. Being tired makes it more likely to occur.

[irishwon]

Hi, I have an 11mm pineal cyst and was told "nothing to worry about," two years ago. I saw a new neuro a few weeks ago and she said they can in fact be symptomatic. I'm having another MRI tomorrow and see the doc again on Tuesday. I also have terrible problems with sleep. I can't get to sleep for a couple of hours and am exhausted all day. I'll ask doc this week and let you know if I get any more info.

Carol

[gdbsmom]

I was in car wreck when I was 10 and had three skull fractures. At 16 I started having severe migraines. In my twenties the drs. Found a penial cyst. Now in my thirties still have severe migraines 9- 15 times a month and suffer with insomnia. And drs tell me none of it has to do with migraines. Ugh. It's very frustrating. I read an article that said people who start having migraines at an early age are more likely to suffer from depression. I think it's because of so called specialists.

[sambramhald]

hi i to have a pineal gland cyst. My neurologist states my symtoms are not related but i suffer from severe sleep issues, i suffer hallucinations both visual and audio in my sleep it can be very scary as i can see these things and hear them and no im not schizophrenic as this doesnt occur in the day also i sleep walk. this as all started since i was 13 now 25 and no answers. i had a head injury at 13 the symptoms began but yet no relation to the injury or cyst My theory is that i had a serious bang to the head the cyst developed or grew and it effects my melatonin levels and disturbs sleep but to a Dr my theory is crazy why???. i am now fed up!!!! does any body else expirence this? im sick of been told im depressed by my gp

[NuseMaria]

sambramhald-I will be 43 this year and was diagnosed with a pineal gland region cyst in 2012 during my pregnancy.  I had an MRI done due to sever Migraines.  I have always suffered from Migraines, but during my pregnancy it was horrible.  I have since continued with severe Migraines, sleep disturbances which include vivid hallucinations during sleep.  Typically, they will wake me up in a terror, I things vividly in my room.  These cause me at times to jump out of bed in a panic.  Once I am fully awake I am able to see that there is nothing in my room.  I have had these for years.  Sometimes worse than others. I am no experiencing some memory loss and problems with word recall. I will start a sentence and know the word I want to say but have trouble recalling it.  I am also having issues with focusing and memory.  

[Gretsky]

Forgot to mention about your 11yr old daughter, aa257. I understand the concern about putting your daughter on stimulants, when it may be like a band aid solution and not dealing with the real issue.

I would encourage you to pursue further diagnosis, but would definitely allow her the clarity that the stimulants provide. I take Dexaphetamine and it makes me feel"normal". I don't feel hyper or high, just normal. Family and friends say the same. That I seem back to normal. (My first 30 years had no symptoms). It took 2-3 weeks to settle after very mild reaction of slight breathlessness and jittery feeling for 20-30 mins. But not really much to worry about and now I don't get any of that. I cope better with life too, I think because I can just live it, without constantly trying to focus / concentrate / stay awake!

[Gretsky]

I too have a pineal cyst and narcolepsy (no cataplexy). I have bouts of confusion and lack of focus and often have headaches at the base of my skull. I was also told that pineal cysts were nothing to worry about.

Well, we are lucky that they are not life-threatening of course, but they certainly cause symptoms. There are many blogs / forums / posts with people all reporting the same or similar symptoms!

The only professional who I have had acknowledge the connection as obvious was my kinesiologist (who's is also a chiropractor). As she said, the pineal glad is responsible for producing melatonin which regulates sleep patterns and efficiency, so if you have a cyst there and suffer sleep-related issues, why could it not be possible the two are related? Seems logical to me (& most of those withthe cyst!)

[jas788]

Hi
After various tests to diagnosis the reason for my constant headache, several sleep studies, and trying unsuccessful treatment for sleep apnea, I recently found out that I have a pineal cyst (8mm).  Of course, neuro said it was nothing to worry about and had nothing to do with anything, but sounds like a lot of you out there are experienceing similar lack of help from doctors.  Unfortunately I don't have much info on what to do next (sleep specialist said he's never heard of a test for melatonin levels), but I thought at least I'd let you all know out there that, yes, there are others with the same cluster of symptoms- some times it's just nice to know your not imaginging it all.  
I'll post again if I get any more helpful info

[aa257]

Please let me know if you find out anything.  My 11 year old daughter has a 9mm cyst on her pineal gland and was just diagnosed with narcolepsy with cataplexy.  I would like to know if you find a doctor that will help you .  I am not really up for putting my daughter on stimulants if the cyst is attributing to the problem.

Thank you
AA
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[4mandy]

Hi, hope you and your husband are well.
I also have a pineal cyst. I went for years not being able to sleep. Doctors didn't seem to think it was a big deal. But this year it got worse. I noticed that when I was trying to sleep just laying there awake I was dreaming. But I looked at the clock over 15 minutes or so. My mind was going crazy. I couldn't remember things and very confused. I asked my doctor to check my melatonin levels. I found out that I had a large amount of it in my urine. Don't know why. So I went for a sleep study and found out I have narcolepsy. And it can make you very crazy. I also pass out or drop to the ground, this is cataplexy from the narcolepsy. It paralyzes your muscles. You can have very vivid dreams and sometimes not be able to respond after waking. So yes I believe that it has to be related. But the neurologists of course say no. Thing is the pineal gland isn't something that is really studied. But when the pineal gland is what controls your sleep and you have a cyst there putting pressure on it and you have sleeping issues HELLO? So I am searching for new doctors to help with this. Hope your husband finds the help and answers he needs! Take care.

[Suri123]

Hi plynn, how are you and how is your husband doing? Is he able to get adequate sleep? There is not much documentation on the sleep symptoms of pineal cyst but it does affect sleep in cases where cyst is big enough causing pressure symptoms. Hope you will get some information from the following link regarding the pineal cyst and melatonin.
http://www.webmd.com/brain/pineal-cysts-symptomatic
http://www.webmd.com/sleep-disorders/tc/melatonin-overview
I would suggest you to get your husband evaluated at a sleep center for a sleep study. Keep updated on the doctor advice. Take care.

[KatEyes]

I just did some googling, and while not scientific, there's sure a lot of anecdotal evidence of sleep being affected. Is your husband's doctor a neurologist?