Pineal Cyst: What symptoms led to your diagnosis?

Posted by Jeep @jeep, Aug 18, 2011

Seems that we've found that I Have a Pineal Cyst. It was discovered while investigating tinitis and vertigo issues. Nurosurgeon says it's not the cause of my symptoms. Other discussions I've read show many folks with PC having similar symptoms and similar conclusions by thier neurologist. Symptoms include visual disturbances (eye strain), diziness, fatigue, constant tinitis- often pulsatile, constant low-grade headache. The only relief is occassional doses of Lorazapam.

Anybody have any insight?

Thanks

Jeep

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@susanmaria

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.

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I'm 55 and male and I've not had melatonin measured. Given what the pineal gland is responsible for though thay makes sense.

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@saints2003

Those were also my original symptoms upon vaccination late summer 2021. On one visit she did say they were not typical MS symptoms. The MS diagnosis happened after a spinal tap contained oligoclonal bands ie. Elevated proteins. What confuses it all are a few bulging discs. The spinal cord lesions are in close proximity to a bulging disc. I have wondered if a disc issue and poor posture moments can cause those vibrations. My most recent MRIs were only a week ago so I will have a follow up before November is done and I will ask more about the cyst. I do have trouble sleeping and do wonder if that's a melatonin deficiency.

Jump to this post

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.

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@susanmaria

google: Life Extension hormone panels female (or male). What you want is hormone tests especially for the ovaries, thyroid, and pituitary. If you want I can check with my husband for the pituitary hormones. Most doctors will balk at taking the pituitary hormones because they think they/doctors are the right hand of God and know everything. My husband goes to the pituitary clinic at Strong Hospital, Rochester NY. He see's an endocrinologist and neurologist on the same appointment and he likes them a lot. Make sure if you are female and still having a cycle that the female hormone tests are on day 17 - 21 of your cycle. This means day 1 starts as the first day of the menses. I live in Buffalo, NY. If you want I can give you a phone number to call me.

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I want to add that you can do baseline blood and saliva tests yourself for the pituitary testing for growth hormone hormone, testosterone, etc. However at the Strong hospital my husband twice went to the outpatient clinic there where they hooked him up to an IV and injected a solution, then periodically throughout the day drew blood. So one cannot do all of the blood testing yourself. Do you have a fax number if I find further information on testing? Also Strong/pituitary clinic requires a referral from another doctor.

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google: Life Extension hormone panels female (or male). What you want is hormone tests especially for the ovaries, thyroid, and pituitary. If you want I can check with my husband for the pituitary hormones. Most doctors will balk at taking the pituitary hormones because they think they/doctors are the right hand of God and know everything. My husband goes to the pituitary clinic at Strong Hospital, Rochester NY. He see's an endocrinologist and neurologist on the same appointment and he likes them a lot. Make sure if you are female and still having a cycle that the female hormone tests are on day 17 - 21 of your cycle. This means day 1 starts as the first day of the menses. I live in Buffalo, NY. If you want I can give you a phone number to call me.

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@susanmaria

Check your hormone levels.

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I'm happy to, which ones though. So far just checking thyroid hormone levels

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@saints2003

Those were also my original symptoms upon vaccination late summer 2021. On one visit she did say they were not typical MS symptoms. The MS diagnosis happened after a spinal tap contained oligoclonal bands ie. Elevated proteins. What confuses it all are a few bulging discs. The spinal cord lesions are in close proximity to a bulging disc. I have wondered if a disc issue and poor posture moments can cause those vibrations. My most recent MRIs were only a week ago so I will have a follow up before November is done and I will ask more about the cyst. I do have trouble sleeping and do wonder if that's a melatonin deficiency.

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Check your hormone levels.

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@lisalucier

Hi, @saints2003, and welcome to Mayo Clinic Connect. You've had to deal with a number of health challenges.

Here's one article I thought might interest you from a Mayo Clinic neurologist on pineal gland cysts https://newsnetwork.mayoclinic.org/discussion/pineal-gland-cysts-are-common-but-dont-normally-cause-headaches/

I'm wondering what your doctor has said about these vibrations you have experienced in your face and hands, and which now seem more like a seizure?

Jump to this post

Those were also my original symptoms upon vaccination late summer 2021. On one visit she did say they were not typical MS symptoms. The MS diagnosis happened after a spinal tap contained oligoclonal bands ie. Elevated proteins. What confuses it all are a few bulging discs. The spinal cord lesions are in close proximity to a bulging disc. I have wondered if a disc issue and poor posture moments can cause those vibrations. My most recent MRIs were only a week ago so I will have a follow up before November is done and I will ask more about the cyst. I do have trouble sleeping and do wonder if that's a melatonin deficiency.

REPLY

Hi, @saints2003, and welcome to Mayo Clinic Connect. You've had to deal with a number of health challenges.

Here's one article I thought might interest you from a Mayo Clinic neurologist on pineal gland cysts https://newsnetwork.mayoclinic.org/discussion/pineal-gland-cysts-are-common-but-dont-normally-cause-headaches/

I'm wondering what your doctor has said about these vibrations you have experienced in your face and hands, and which now seem more like a seizure?

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I have a bit of a unique situation. Not long after the covid jab I started getting these intense vibrations in my face and hands. They'd last 3 or 4 seconds at a time and happen 3 or 4 times a week. I ignored it, and literally told myself that's the big immune response to the jab they bragged about. Investigated potential surgery for a herniated L5/S1 and the surgeon sent me for MRIs. This was about 8 months after the jab. They found spinal cord lesions in the cervical and thoracic cord, but they also found a pineal cyst, 9mm. It ultimately turned into an MS diagnosis. But the neurologist still leaves room for it being something else given I don't have any disability. I have tinnitus but always have had, it's constant and they also found a good sized thyroid nodule but MRI's have been stable since spring 2022. I still get the vibrations but now they seem more like a seizure? No loss of consciousness but wow, they're intense when they happen. Latest set of MRIs was 2 weeks ago and the cyst is still there. I have a bad back, several bulging discs which have their own set of symptoms, but I wonder if the cyst is causing these vibrations - far more in tense than 'tingling'.

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I have a pineocytoma, so a pineal tumor instead of a cyst. I was experiencing issues with eye movement and inflammation of the muscle around the eye. In addition to vision issues. I too was told that my eye issues were unrelated. I also have arthritis, which is more than likely the cause of the inflammation. But not 100% sure. Thus far no other symptoms like tinitus. All I was given for the eye issue was prednisone, which helped.

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