Pineal gland Cyst: Does anybody else have any experience with this?

Hi @ah22, I'm tagging a few members who have experience with pineal gland cysts like @shermancrew @non242021 @summer0828 @brainfog66 and others.

You might also appreciate the posts in this related discussion:
- Pineal Cyst: What symptoms led to your diagnosis?: https://connect.mayoclinic.org/discussion/pineal-cyst/

Ah22, have you talked to your doctor about your symptoms getting worse and what options are available to you?

I’ve had one since as long as I can remember. The cyst was and has always been benign. I also have rare seizures which medicine just doesn’t help whatsoever, I have tried it all.

I saw a NS, he says this area of my brain seizures can’t form. I think it’s him lying. I think they personally just like holding people hostage until we all die. I don’t want to be part of it anymore. I want it removed and the headaches to stop seizures may not be as frequent or triggered then!

These docs go through all the schooling to tell us how we feel. They have no idea what it’s like. They don’t care if we’re making improvements or if we die. Truthfully being honest. It’s about them and just them.

I have one but I think it’s small. I’ve had numerous MRIs as I’ve had epilepsy and migraines since a kid. I have a lot of plaques in my brain but they always say it’s typical no matter what my age has been. Just had a DAT scan to rule out Parkinson’s and it did. So I now just have 6 types of horrendous headaches, seizures and tremors that I take two kinds of med for.
I read online awhile back that a pineal cyst is a type of calcification I think, and that it can be dissolved. Not sure if it’s true but it might be worth researching

I have one. Not sure what size but I don't think its that big. It can affect you even if it isn't fast growing. I've been scanned for MS a couple of times and that is how they found it. Honestly, I think it just affects my sleep. I have wicked insomnia.

@jenndustin I know it's been a year since you replied, but I am new to Mayo connect and this group. Actually just found this group after starting with the Sleep group. I was diagnosed with a pineal cyst back in the 80's (yes I am OLD) and have had insomnia since I was in my mid 20's. Back when it was diagnosed, I was told it was benign and there were no associated symptoms. Well, I had severe headaches till I was 45ish as well. I still have insomnia and, although I have asked docs "helping" me with my insomnia over and over again if it could possibly be due to the pineal cyst, was never given an answer, my question basically ignored. Over the years with numerous providers at different hospital institutions I was made to feel as if I was not doing all I could to "work" on my sleep. I just got a diagnosis of Delayed sleep phase last year and am finally seeing a sleep psychologist who is entertaining the thought that both diagnoses could be related (imagine that). I am Literally Tired of being treated like the insomnia is all in my head and Finally feel as if I am being believed. So. although I don't feel better that you have have bad insomnia along with the Pineal cyst I am amazed to have found someone else who has experienced the same thing. I was wondering if any of the docs you have seen recognized the diagnoses as being connected, if you have seen anyone who has addressed the insomnia with you and if you have found anything that has helped. Hoping you are still connected with this group as I would really love to hear from you!