Pineal Cyst: What symptoms led to your diagnosis?

They did not give any reason but have tried many diff medications with no benefit.
I wondered about spinal fluid leak causing low pressure? Because he feels better lying flat but neurologist doesnt think so.

@moecavicchi, as a parent, it must be so hard to see your son suffer with headaches and other symptoms that affect his quality of life.

I'm tagging a few members who have experience with pineal cysts like @bucsfan22 @sungaltoo @jenndustin @golfguy2282 @elsk @susanaz, some of who also manage headaches and other symptoms.

What has the neurologist suggested might be the cause of the headaches?

Wondering if anyone on this thread has had any success with figuring all this out. My son is 40 and has a 1 cm pineal cyst and similar symptoms to what has been reported here. He had a craniotomy for an enlarging arachnoid cyst in his cerebellum 10 years ago. I assumed his current symptoms were residual damage from that surgery. Hee had high pressure headaches for over a year before the doctor finally ordered an mri and saw the cyst had grown and was blocking the flow of cerebral spinal fluid. They never mentioned the pineal cyst which was much smaller at 1 cm. The surgery for the arachnoid cyst changed the headaches from unrelenting pressure to feeling ok when lying down in a quiet environment. He can be up for an hour or so before his head starts to hurt and he has to lie down and it will slowly diminish. He has vertigo and cant drive and sound sensitivity. Compared to before this is better because he can get relief by lying down. He doesnt complain but has no life. I asked the neurologist if it could be the pineal cyst and he does not think so. I wonder if this surgery could be done endoscopically rather than a craniotomy? I dont think he would want to go through a craniotomy again. He lost a bit of blood and woke up with meningitis. He suffered with that for 7 days till they gave him prednisone. No easy answers I guess..

Thanks for sharing. My son has a 1 cm pineal cyst and headaches and vertigo and sound and light sensitivity. He has been told that it is unrelated to his headaches. Let us know how your surgery goes.

Hi Everyone,

I wanted to share my story. I currently and diagnosed with a pineal cyst that is 16mm. I was written off by ever neurologist that I have seen that my symptoms and migraines couldn’t be from my cyst. After 26yrs of being in constant pain I was finally referred to Mayo. The neurologist I saw started to write off the cyst like everyone else. I pushed and they did a new MRI scan everything except my cyst is normal. My previous scan the cyst was 14mm so it has grown. I now have a consultation on Monday with a neurosurgeon at Mayo. I had to fight and advocate for myself and hoping this surgeon will agree to remove the cyst.

That’s truly amazing that he does this. What’s his name? Please msg me! I need to fly to Texas for surgery it seems.

I'm 55 and male and I've not had melatonin measured. Given what the pineal gland is responsible for though thay makes sense.

I wish people would indicate their sex and age. Could be low melatonin. There are other reasons for poor sleep. I have found myself that low vitamin D (that only sunlight or tanning works in Buffalo, NY in the middle of winter-Vit D pills do not work for this issue. Another cause is low progesterone especially found in perimenopause/menopausal women.

I want to add that you can do baseline blood and saliva tests yourself for the pituitary testing for growth hormone hormone, testosterone, etc. However at the Strong hospital my husband twice went to the outpatient clinic there where they hooked him up to an IV and injected a solution, then periodically throughout the day drew blood. So one cannot do all of the blood testing yourself. Do you have a fax number if I find further information on testing? Also Strong/pituitary clinic requires a referral from another doctor.

google: Life Extension hormone panels female (or male). What you want is hormone tests especially for the ovaries, thyroid, and pituitary. If you want I can check with my husband for the pituitary hormones. Most doctors will balk at taking the pituitary hormones because they think they/doctors are the right hand of God and know everything. My husband goes to the pituitary clinic at Strong Hospital, Rochester NY. He see's an endocrinologist and neurologist on the same appointment and he likes them a lot. Make sure if you are female and still having a cycle that the female hormone tests are on day 17 - 21 of your cycle. This means day 1 starts as the first day of the menses. I live in Buffalo, NY. If you want I can give you a phone number to call me.