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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 Migraine.com contributor.

    http://newsnetwork.mayoclinic.org/discussion/pineal-gland-cysts-are-common-but-dont-normally-cause-headaches/.

    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; http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.

    Let us know how you are doing,
    Nancy

    1. hi! I experience very similar issues and also have a pineal cyst (1.8 cm last time it was measured). Doctors have been very dismissive about it for me as well. Similarly, I have had migraines for years, but nothing like what I am experiencing now. I saw a neurosurgeon who operates on pineal cysts, but I am hesitant to go through with surgery, considering so many other doctors say not to and because of all the risks involved. I hope you can give an update on how you are doing. Has anything helped you manage your symptoms? I don’t know how much longer I can deal with this brain fog, fatigue, and (what I would describe as) head pressure. Thanks in advance and I hope you are doing better!

      1. ,
        Thank you for reaching out and sharing your experience with us. I'm sorry you are seeing increased symptoms, that's very frustrating.

        I hear you on being hesitant about surgery - that's a big deal!! There are a few more things to consider, if I may. Migraine is thought to be a neurological disease that can impact our entire body (brain fog included) currently without a cure. This means it's a disease that's managed with lifestyle modifications, medication, supplements, devices and complementary therapies. I've heard a true migraine/headache disease expert (which is not the same thing as being a neurologist, although many are) suggested thinking of migraine like asthma - it's always there, however we may not always have an attack.

        If you haven't had a chance to seek out help from one of these true experts, who have additional certified in headache medicine, I would encourage you to. Let me share information on how these doctors are different and how to find one; https://migraine.com/blog/really-find-headache-specialist/
        https://migraine.com/blog/seeing-a-board-certified-headache-specialist/
        https://headaches.org/resources/healthcare-provider-finder/

        Please let me know what you think - we're here for you!
        Nancy Harris Bonk, Patient Advocate/Moderator

      2. Love that thought about asthma from the headache expert, Nancy. I think it could be useful in explaining what migraine disease can look like to those who may not be familiar with it. Asthma has a greater degree of awareness and so it's an easy connection to make. Thanks for sharing that! -Melissa, migraine.com team

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