Pineal Cyst: What symptoms led to your diagnosis?

Those are not so weird symptoms of pituitary problems. The lactation and double vision problems are really key points and if a doctor does not pick these symptoms up, they should go back to college. The average endocrinologist will not easily diagnose. They are trained mostly for diabetes and thyroid issues. Not only do you need blood tests but an MRI (of the head). Pituitary problems/tumors are NOT considered a brain tumor. You need a specialist (endocrinologist and neurologist) specifically with the pituitary. A pituitary tumor is quite serious as if it presses against the optic nerve, one could go blind. For the surgery, the. doctor go win through the nose. My husband ended up being on growth hormone, thyroid and testosterone permanently. He was also put on antidiuretic hormone after the surgery but by some miracle the pituitary was able to regenerate this. Let me know what happens. The Pituitary Clinic at Strong Hospital/Rochester, NY is excellent. Have courage. Please let me know what happens. Susan

I am actually very interested in hearing more of the information you have on this myself. You seem very enlightened on the exact breakdown of when to test for what and how to get the best results. I am dealing with a very uneasy thought of possibly having some type of pituitary tumor just not sure exactly what kinds yet. However I am having several weird symptoms that caused me to be tested such as lactation while my youngest child is 6 and I've not breast fed since she was 2 months old. Vision trouble as I see double of most everything And can barely read anything with my contacts and glasses both on. I have majorly lost weight in the past year. Lost any and All motivation to even get out of bed. I hurt all the time and am very weak and fatigued a lot. And don't get me started on the headaches I get every other day. I'm tired of feeling this way all the time and just want to feel like myself again and not this negative Nancy who's calling apart at the seams anymore ya know.

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.