Pineal cyst and various symptoms

I started having chronic head aches ten months ago that were really severe and reoccuring vertigo. For a while i thought it was my 12.9 mm pineal cyst but just recently I got diagnosed with POTS syndrome (positional orthostatic tachyecardia syndrome) which can cause orthostatic hypotension leading to awful headaches and sometimes people pass out it can cause vision problems and chronic fatigue which makes up a lot of the symptoms you see here before you get a surgery or anything you may want to see a cardiologist about POTS because there's a number of things you can do to treat that farily easily (medication and such) I don't know if that could be it for any of you guys but its worth a try!

Hello everyone,I am a 41 year old female. I've been suffering from vertigo for the past four years. Additionally, my ears clog with wax every year, and I have to have the wax aspirated. Recently, I had 2 episodes of vertigo back to back. Usually it's only once a year, and then it goes away after the cleaning.... this time however symptoms persisted. I had all audiological tests done and they came back normal. Finally my ENT ordered an MRI of the brain. They found a 1.5 cm pineal cyst pressing on the tectal plate. Yesterday I had 3 violent vomiting attacks, could barely stand and walk, felt dizzy and nauseous all day.... headache and all. Today I got a message from my ENT Dr. saying my symptoms are not related to the cyst and that he will call me later. In the meantime, i've been reading up on the topic and have an appointment with a neurologist this Tuesday. I feel better today, but yesterday I thought my head was going to explode. Other facts about my health. I have had 2 surgeries on my wrist to remove ganglion cysts (3 in total). I have ovarian cysts, and polycistic breasts and very painful periods and cramps. I've been having troube falling asleep ever since I remember. I remember asking my mom "How do you fall asleep?". Must have been 5 or 6.  Still today it's hard for me to fall asleep. I have overtire myself and just pass out in order to sleep.... or jog for miles. But I can't do that anymore because I have a herniated disc too.... So, like all of you I'm looking for answers. I don't know if this feeling is also related to menses, since I had them when I was vomiting ..... Thanks for sharing all your stories. Hoping to find answers soon. I'm going to start a raw diet, and try to eat organic as much as possible. Let me know what you all find. Thanks again.

I too am in Calgary and experience so many of these symptoms. I'm going to be asking my Dr about this cyst. Have you had any success in finding treatment here?

Hey Gina. Not sure if you are still checking the post or not but I am in Boston MASS and also have been diagnosed with an 11mmx18mm pineal gland cyst that is causing lots of debilitating symptoms for the past year and have been in a nd out of doctor's offices. I am meeting with Dr.Curry who is a wonderful neurosurgeon at MGH in July to hopefully book a surgery date. HE has successfully done these pineal gland surgeries and hopefully you can look into it if you are still looking! Hoping you are not suffering and have found some relief! A pineal 'Cyster'

Please can I know the cost of the surgery

Hi - I have a 13mm pineal cyst. The docs told me nothing to worry about but my migraines are increasing (I've had one for 9 days now) and I have arm and hand numbness. Where should I go for s 2nd opinion? I currently go to Dent Neurologic Institute

Hi my daughter had an mri done in march and they found a 11mm × 10 mm pineal gland cyst and now she had another mri here July 10th only 3 months later and it has grown to be 12mm × 13mm, she is only 17 and they have her on 3 pills a day to prevent seizures and 2 for pain and 1 for iron because her iron is really low, it should be at 30 normal but she is a 17 is what they told me after her blood work. I don't know what to do she will be a senior this year in school and she is going through alot!

Hi I have a 1.6cm pineal cyst and have lots of the same symptoms as people on here. The short term memory probs really get me down and my vision I feel is deteriorating. The tiredness is crippling yet my Neurosurgeon says it's too risky to operate and I would prob die on the table. I'm on the surveillance programme so I get scanned every 12 months for signs of growth etc. Can I ask what the signs are you were told to watch for, regarding pressure build up.? My headaches are bad yet I'm told it's nothing to do with the cyst, it's crazy.! Thanks. Angie

Hi, if it were me I would go to seek out other neurologists ( there will be someone that will take this seriously. There is no one that understands your body better than you do.)
I have been in and out of emergency 3 times in a week and a half. First time I went no tests and told me I had a virus. Second no tests and I was told I have migraines. Third time finally did a CT Scan and found a 3mm cyst on my pineal gland. They told me that it has nothing to do with my headaches or any other of my symptoms for that matter. I am at a loss for words and and no pain meds get rid of my headaches because there so severe. Everyone thinks I'm nuts or making my symptoms up. I have had a headaches for 3 weeks now.
But like I said only you know your body more than any one else. I would seek other neurologists.

How big was your cyst ? As I have been recently told I have one there that is 1cm by 4cm. I'm

Hi, I have had issues with severe fatigue, muscle and joint pain, vertigo, confusion, pressure behind eyes and recently started having issues with numbness and tingling in my hands and feet. 3 years ago because of this I was diagnosed with M.E which if you search online will find its diagnosed by elimination or as most m.e patient know it's just because they don't know or don't want to make the effort to find out (it's an umbrella diagnosis). When the numbness and tingling started they thought there was a chance I had M.S instead so was sent for a MRI. With this they found a pineal cyst. They say this is incidental bad want a rescan in 4 months so nothing to do with my symptoms but from this page I'm wondering if the cyst is the cause or even as a result of a condition that's causing these symptoms. At my next neurology appointment in a week I will be asking about my symptoms again and will ask if there is any chance of a link. If removing this gives me the chance at my life back I'll be jumping at the chance.

We have a lot in common! I too am a teacher, mother of two, and 36 years old. My pineal cyst is 1.2 cm and was told there is nothing to worry about by two neurologists. I am now on my third doctor. My forgotfulness is getting worse, I have headaches frequently, my vision is worsening (is anyone else's vision getting worse), and I have nerve damage in my hands and feet. I know that you posted this a year ago am wondering how your symptoms are now.

I too have numbness and tingling in my hands and feet! They thought I too could have MS and did the MRI to find the pineal cyst. Is your vision getting worse?

Abbygirl,

can you contact me and give me more information? I am dealing with issues and not getting answers. I have the pineal mass as welll and this is the only culprit that they are finding in all the tests they are doing.

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Hello! I have a cyst that is 9×14mm not sure that qualifies as big, by any means. No hydrocephalus here, just a HORRIBLE continuous headache for over a year now. I seriously cannot take it anymore. I live in northern VT and have an appointment with Dr Kim in TX. He won't look at my records, even for a consult unless I come down there though. So frustrating! If you think your Dr would see me or even think it is a possibility, please let me know. I am completely desperate. Thank you!♡