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Pineal Cyst - Help

I created an account just to get a bit of help. I've never met anyone with these symptoms or anyone that has faced a situation like this, so I'm incredibly lost.

20 months ago I started, out of the blue, having debilitating symptoms. The best I can describe is brain fog (which is a very irritating thing to describe) or cognitive decline, muscle weakness, fatigue, memory issues, and constant dizzieness. Now, I have had yearly migraines, but they are nothing like this.
My first doctor wouldn't even give me the time of day - treated me like a hypochondriac and wrote me off. I've never had a history of being one, but her treatment of me made me worried I was. I gave up caffeine because due to the fog, I didn't understand what was happening to myself anymore. I would get jittery and feel nothing but anxious. I couldn't get through the fog. I used to smoke Cannabis for my chronic pain, but I had heard that over time ones reaction to cannabis can change, so I worried it could have possibly been the case. Haven't smoked in 20 months, still getting worse. I don't drink alcohol either.
I immediatly got a therapist. We first thought it could be psychological, so I started working out and did subconscious therapy for my PTSD, even tried medication. It isn't psychological, not to mention I've been working out for 11 months, and every day I still feel weaker, not stronger. My therapist is SURE it isn't psychological, and I see her weekly for the 20 months of this experience.
Then I was diagnosed with Iron deficient Anemia. Fixed that too. Nothing.
Finally I was sent to a Neurologist. She made me feel reassured - she was sure she knew what was wrong. I had 3 MRI's. During the 2nd MRI, she found a rather large Pineal Cyst (they never told my, but according to the MRI they gave me about 12-15mm). She felt she had hit the problem for sure.
She sent me to a neurosurgeon. He is hesitent to do the surgery as the risks are immense, although he has done it before to great success.
What I'm essentially asking is there anyone - ANYONE - who has had these symptoms too? Possibly had the surgery? I'm scared, and lost, and I don't know where to look. If anyone has anything to offer, I'm all ears.

  1. Hi Lunaxaddict,

    Thank you for reaching out to us and being part of our discussion forum - we're glad you're here!

    Migraine disease is a primary headache disorder which means it's not caused by any other condition. Pineal cysts do not cause migraine disease, but can trigger attacks.

    "In most cases pineal cysts do not cause Migraines. This article from the Mayo clinic is helpful in understanding this condition, but it states that these types of cysts rarely cause Migraines and are often left untreated. Having MRIs every few years to keep an eye on it is recommended, so hopefully there will be no change in the next scan that you do." Per Katie Golden, another contributor.

    At this point I would encourage you to seek out the expertise of a true migraine/headache expert. These doctors are different from neurologists in that they are board certified in headache medicine, which is different than being certified in neurology. When you get a chance, take a look at these articles; and

    Let us know how you are doing,

    or create an account to reply.