Pineal Cyst: What symptoms led to your diagnosis?

I don't know where to go or seek help. The main stream medical system is a joke. They don't even know what the pineal gland does, they just think it's for sleeping. So it's apparent that these individuals that I have come across try to help me think that because of the size it still isn't a concern and they don't think that it has anything to do with my symptoms because they say it's not pressing on anything so if you have a 9 mm cyst in your brain and it's a fluid filled with liquid I don't even know what you don't feel good you have no energy your eyes got light sensitivity your tinnitus is going nuts you're getting audio visual disturbances to where you close your eyes and you see strobe lights I had vertigo and everybody just thinks that I'm insane. Because of this I have lost my ability to have gainful employment as I don't know how I'm going to feel one day to the next. I guess they just want to label me as crazy and put me in a little neat box so they can sleep soundly at night. They don't know what it's like to be in my head I don't want to get the surgery done I don't want anyone to drill into my head believe me that's the last thing I want but I'm so desperate at this point to find some kind of relief because I haven't found it in anything I spent thousands of dollars thousands of dollars on supplements on different things to try to help me feel better I have seen countless other doctors I've seen therapists I've done everything under the sun you name it you name it I've done it to try to alleviate my symptoms and nothing is worked nothing and these doctors and these support staff just want to label me as crazy because they don't understand and they're not specialized in this area and they don't even want to give me a recommendation out the game is rigged God bless our veterans

@tiredofthebs, if you would like to seek a second opinion with Mayo Clinic specialists, please find out how you can self-refer here: http://mayocl.in/1mtmR63

The latest info on Mayo site says Patel has since identified a constellation of symptoms — headaches, insomnia, episodic cognitive deficits and, rarely, numbness in limbs and problems with balance.
No mention of tinnitus. The pineal cyst was found. Incidentally on a scan. I had about seven years ago I think after a car accident my doctor told me they are usually not discovered, except in a deceased persons brain because theres no symtoms . I have gotten consistently worse tinnitus in the last few years to the point that I am isolating a lot and life is passing me by . lately consistently at least level 8. The surgeon Patel on the mayo say makes no mention of resolution of tinnitus after he dissects the gland, which is also known as the seat of the soul.

Sorry, I am talk texting. I meant that Dr. Patel said after dissection there is resolution of other issues but tinnitus not one of them.

I feel like tinnitus is a neurological issue. I have seen countless specialist, but not a neuro doctor. Yet another set of hearing aids on the way and signed up for tinnitus training any comments or input much appreciated.

Hey everyone,
Thanks for sharing you stories - it is interesting and insightful to hear how other people are dealing with pineal cysts. I am just gonna add my story to the mix:
I got sick with virus (may or may not have been Covid) last October (2022). I had a pretty sore throat, lots of phlegm in the throat and sinus for two days, then things started easing off. I thought I was good not too long after that. However, here and there the sore throat and sinus issues came back, and out of a sudden I noticed that my field of vision wasn’t stable anymore. I felt as if my pupils in my eyes were moving slightly left to right and back all the time. Sometimes that movement changed to up and down, or around in a circle. Focusing and concentrating became very hard, and the more I tried the more I felt pressure in my sinus and forehead (kind of like brain fog), making focusing even harder. I went to the doctor and after some basic examinations regarding the slight vertigo, he suspected vestibular neuritis, which is the irritation of the vestibular nerven often happening after a virus infection. It definitely seemed/seems to fit. For this condition, all it takes is time…but it can be lots of time. I still do have the vertigo symptoms to this date, still sometimes with pressure in the head.
To rule more severe conditions out, the doctor ordered and MRI of my brain. Just last week the results came back - 1.6 cm pineal cyst, exerting some pressure on the tectum with subjective narrowing of the cerebral aqueduct. The doctor referred me to a brain specialist and now I am waiting to hear back…no idea how long that will take.
From what the doctor told me and what I read here and other places, my cyst is a considerable size. I read that over 1.5 cm symptoms like the ones I experience can occur. What are your thoughts? Probability that vestibular neuritis is the cause vs the cyst vs something else?
Above everything I find the slight vertigo symptoms just absolutely annoying and frustrating - I know they could be worse and I am grateful that they aren’t but I constantly feel off balance. Knowing now that there is a pretty big cyst in my brain doesn’t make things better. Definitely kinda scary. Anyways, I hope I hear back from that brain specialist sooner than later with more answers than questions. I just don’t quite know what I should be doing in the mean time to somehow get rid of these symptoms…

Hello @saphira and welcome to Mayo Clinic Connect. Thank you for sharing your story and journey with your diagnosis. I am sure you are hoping for a quick response from your doctor, which is understandable.

I think in the meantime, the wait following a diagnosis and before a treatment plan is always a difficult time because it is human nature to want to move in the direction of action. Perhaps in this interim, you might be able to take some time for self-care and also just time to let it all soak in before the next phase of your journey. If action feels better, perhaps you craft a list of questions for your follow up appointment?

Members such as @passerby and @jeep may be able to come in and share what they felt was beneficial for them.

What sort of support from other members would be most helpful?

Hello @passerby and welcome to Mayo Clinic Connect. Here are a couple Connect discussions on tinnitus you might be interested in:

– On pulsatile tinnitus, https://connect.mayoclinic.org/discussion/pulsatile-tinnitus-1/
– On tinnitus control, https://connect.mayoclinic.org/discussion/tinnitus-control

Thanks a lot for the kind and comforting words, @amandajro
At the moment I am trying to ignore the symptoms as much as possible and just enjoy myself. Doesn’t always work but I keep trying 😀 today the symptoms were worse, giving me a heavy head, somewhat like brain fog. Because I didn’t expect that diagnosis when I saw the doctor last, I totally forgot to ask at which urgency the referral to the brain specialist was sent out. If I don’t hear back next week, which I don’t expect I will, I will go back to the doctor next Friday. I think what would be helpful to hear from others are two things: what tests/examinations have you done firstly to explore the cyst more, but secondly to rule out other causes of your symptoms? And the other thing is, do you know whether balance exercises help to deal with vestibular issues? When I had a concussion a number of years ago, I was shown balance exercises to help re-calibrate the brain. I am wondering whether those can be effective at all if the cause of vestibular issues is the cyst. I will for sure make a list of questions to ask the doctor next time I see him, and those questions will also be on there. Thank you, y’all. Hanging in there… 🙂

Good luck with your exams. I’ve never followed the pineal cyst thing since my pcp said they’re meaningless & most people have one & aren’t found until after death. Was hoping it would shine some light on tinnitus but he blew me off about it. If you find out anything Please let me know.
I think you mentioned in another post about your eyes moving all around. I had that too. Before one eye protruded & I was dx with Graves’. 7 yr later I was dx with Menieres to explain attack at 4 a.m. room spinning wildly eyes spinning wildly. Throwing up , diarrhea. Had to call 911. They gave me IV with I think vertigo meds and fluids. It resolved pretty quickly. The attack was preceded by a terrible migraine that morning before & I thought I was having a heart attack. I’m watching salt intake closely & on fluid pill. The tinnitus is inescapable except during sleep. There is no help, cure, meds , nothing. Just have to somehow live with it. I isolate a lot.
Good Luck. Get well!