Pineal cyst and various symptoms

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Abbeygirl,
My daughter has the same sysmptoms that you have. Please let me know the names of the doctors you saw. Thank you

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I'm posting on behalf of my brother, Kevin. He has many similar symptoms including strange pressure in his head, fatigue, nausea. He has been told he has a pineal cyst (not sure of the size). He also lost a lot of weight in the last year. Have any of you lost a lot of weight?

Ryan Question

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Abyy girl wrote: "After a long surgery (march 15th) and even longer road to recovery , I'm doing MUCH better"
Please describe your recovery and what kinds of problems did you have after surgery.
Thanks.

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I relate oh so well to this. I use to get bad migraines with the blurred vision in my teens and early twenties but they stopped completely for about 13 years. About 3 years back I started getting what I though was the same thing so tended to disregard them. However this last one lasted 3 days and really stuffed up my vision in such an odd way, which started me thinking that perhaps it wasn't a migraine.

So, MRI and bingo, Pineal cyst 9mm.

Also getting very tired, can't run or play sport as much...old age, I don't think so it has come on so quickly !

kellir · Newbie Joined: 10 Mar 2007 Posts: 2

I too have a pineal cyst. I too am dealing with doctors telling me it is asymptomatic. I have severe fatigue, dizziness, memory loss, excruicating headaches and eye pain, worsening depression, and can't sleep. This was found in October. They told me i was born with it, dont worry. I knew I wasn't born with it cuz i have had previous mri. so they reviewed my old MRI and then agreed with me that I was not born with it, yet it is not causing problems. I find it rather coincidental all my problems started 2 yrs ago, that last MRI showing no cyst was 3 yrs ago. I believe it is causing me problems. I don't want surgery, but I would like a dr to admit that this could be the issue. I am afraid i will just have to live with these headaches cuz my neuro just says that it isn't the cause of my head/eye pain..yet he can't tell me what is. I hope one day more research is done about this and these drs are proved wrong. They are often wrong in my case. I would say 9 out of 10 times they give me bad diagnosis and I end up figuring out my own problems, bring the info to them, then they concur. Ridiculous.

dkjk4 · Newbie Joined: 21 Jun 2007 Posts: 1

Hi! My name is Diane and I was just diagnost in April with a 13mm pineal cyst. It started with ear pain last year and I thought it was my teeth. After having my wisdom teeth pulled the pain continued and went into bad migraines. I went to a ear, nose and throat doctor and everything came out fine. He sent me for a cat scan of my ears and that's when they saw the cyst. I went to my regular M.D. and she said it was nothing to get a second opinion with another ENT. He said everything was fine except for the cyst and sent me for an MRI and to see a neurologist. She also said my symptoms could not cause the migraines, eye pain, veritgo, ear pain, nausea and sleep disorder. I feel like I'm losing my mind. I saw a neurosurgeon at NYU and he is sending me for another MRI and an optamologist. He said that my cyst wasn't big enough to cause these symptoms. Also he said that pineal cysts are very rare and he has only come across 3 in his career. I'm sure that my eyes will check out fine as did the blood and urine tests. I can't drive that well and my head is killing me everyday. I have to lay down alot because of the dizziness and I can't function even in everyday chores. How am I supposed to live like this! I'm seeing another neurosurgeon today and I'm going to print out this site so he can see that I am not the only one and that these symptoms do exist! I know this condition is rare but you think that there would be a neurologist with better knowledge in this area! Thanks for listening and I wish you all good luck! We all need It!

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Hi! My name is Diane and early april i was diagnosted with a 13mm pineal cyst. It started with ear pain and went to migraines and eye problems. I went to 2 ear, nose and throat Drs and nothing was wrong. The last one sent me for an MRI which came out with this thing. I saw a neurologist that sent me to a neurosurgeon. He said that the cyst shouldn't cause all my symptoms and is sending me to a optomologist and another MRI. What I have researched is that a pineal cyst (according to people that have it) can give you migraines, eye problems, dizziness, nausea, and sleep disorders all which I have. It's so bad I can not even function some days. I feel like I can not drive( like I'm drunk ,eye wise) headaches are very bad some days and other days there just there but not screaming like I have today. My vision is messed up every day and some days I can not even get out of bed because of the faint feeling I have. I have a husband, 2 boys and an 80year old father to take care of which I am finding very hard to do every day tasks. I really need help and do not want to feel like this anymore. I feel so weird and out of it and really need to get back to work, which I had to stop and to drive, which I had to stop. I can not live like this and I have an appointment to a second neurosurgeon today. If he tells me my syptoms are not related I think I will flip out on him! I did print some of these messages so I can show him and see what he has to say. Good luck to all and hopefully we can all get some answers.

headachesalways · Newbie Joined: 13 Jul 2007 Posts: 1

i can relate to every one of you. my cyst was found back in 03 and foolishly i didnt get a follow up. ive been on hormones (birth control) for many years and recently was forced off of them bc my dr couldnt understand why i continue to have problems. i started my period when i was 10- i have an eye that doesn't move, since the removal of my iud my headache hasn't gone away. i have vertigo all the time. i cant focus- i almost feel im dreaming or like im drunk- its scary. im ALWAYS fatigued and find it difficult to fuction unless im on some type of "happy pill". im scheduled for another mri of my brain ASAP and getting a mri of my back bc the dr feels i could have arth. or something else. if you read the right info on the internet you will read how the pineal gland controls so much of everything else including the CNS. which my reflexes are off as well. i feel like i should be on disability and want to cry all the time bc of the painful headaches. its very hard to focus- even to type this. i constantly feel sick to my stomach and the overall feeling there's something wrong. my mom knows someone who had their cyst removed and from what i hear there's HOPE!!! i hope to have mine removed and finally feel the way im supposed to for the first time in my life. im only 28. ive always been a heavy sleeper and never feeling rested- i had a hard time reading and focusing and it's even worse now where it effects my job. to all of you- keep positive.. im trying Smile

tonchell · Newbie Joined: 16 Aug 2007 Posts: 1

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I am a 16 year old female with MANY fun medical issues.

I don't know if anyone is still reading these, but i have only today found this site. I just about cried, i don't know if it's because now i know that the symptoms i have been having might actually be related to the cyst in my brain.

my pineal cyst is 9x7x6 mm i don't know if that is big or medium, i've read about those with one's 2cm! but i just don't know.

my symptoms:
weak spells, sometimes just overall weakness,
fatigue spells, when these occure i HAVE to sleep
with both of these my arms and legs go a sort of numb, the only way i can think of to say it is my hands don't feel real, i can sorta feel if they are touched, but they DON'T FEEL REAL! (has this happened to anyone else??)
the back of my head will start to throb/pulse, i drop down saying only "ow ow ow ow ow!" going with my pulsating it goes away not TOO long after it starts
my vision blurs, i have bad eyesight as it is, -5.0, but even with my contacts in it will happen, or i sometimes can't focus my eyes, they will just shake and twitch, OR (most times) if i get up too fast sometimes my vision will go totaly dark, i CONSTANTLY see black sparkling specks( so much so i don't notice unless im asked)
CONSTANT! spine pain
will usually have a MINOR head ache.
occasionally get gag like.

HAS ANYONE HEARD OF THIS ONE....
i sometimes, not often, and it causes me NO issues, but it's strange and no dr. has heard of it....
I will hear and feel i guess this egg frying in the BACK of my brain, not head, brain. no heat, but it feels really weird......ANY IDEAS??????

Some side info is that i have what is known as Type 2 collagen, or RUBBER MAN SYNDROME. (ideas on that too would bee nice.)

Thank you to all who read this, and especially reply. I am kinda scared, but that's probably just meaningless paranoia. (or it's that i have SO many undiagnosed medical problems.......)

Pineal cyst and various symptoms

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