Pineal cyst and various symptoms

bentherebefore · Newbie Joined: 20 Jan 2007 Posts: 1

Hi all. First of all, let me say that prior to this incident, I had no history of headache, eye, or fatigue problems.

I have been experiencing some odd symptoms for about 3.5 months now. First, a sudden-onset headache that has been with me for most of the past 3 1/2 months. Occassionally it will go, but most of my day it is there and quite obnoxious.

Along with my headache I get a dull pain behind my eyes, which gets worse if I move my eyes around and to the sides.

I have fatigue that can be very extreme. It is always worse in the morning, and is not relieved by sleep. Whereas a year ago, I could function on 6 hours of sleep just fine, now I can sleep 8, 10, or 12 hours just fine but don't feel any better. I always wake up feeling slightly hung over. This feeling will last through the afternoon.

I have seen my an urgent care doc, my GP, an allergist, a neurologist, an opthamalogist, and a neurosurgeon. I have had 12 blood draws, 1 urine test, a spinal tap, a CT scan, and an MRI... many, many tests. Literally the ONLY thing that has come back abnormal has been a pineal mass in my brain, most likely a pineal cyst. It is 1.5 cm, which is larger than average, so I am set to have another MRI in 6 months.

Therefore I join the numerous people on the internet who have headache, fatigue, and other problems and diagnosed with a pineal cyst. I have done a ton of reading (I'm on disability right now) and am fully aware that pineal cysts are very common. (1-4% percent of MRIs, depending on which stats you look at) I am also aware that a doc will only do surgery on it if it presents MAJOR problems (hydrocephalus or clear and significant growth).

That said, it seems FAR too coincidental that those with pineal symptosms all complain of the same or very similar symptoms. Though I cannot be sure it is the cause of my troubles, I have cause to be VERY suspicious.

I am going to an endocrinologist in 2 days to discuss what I can do about the fatigue.

I want to say to anyone that has had or has a pineal cyst, I wish you the very best and would love to chat on this board.

Guest · Guest

I would love to hear more about what you are experiencing. I have also been diagnosed with a cyst in my pineal gland. However, my symptoms are slightly different than yours. I have the fatigue but no major headaches. I sweat during the night, and have chills all day...I am not sure if this is related or not. I am waiting for my next Dr. appt.

Guest · Guest

I, too, am interested to hear more about how your situation is dealt with. I was diagnosed with a pineal cyst about 2 months ago, and I was told it was nothing to worry about. But I am having similar symptoms.
I have headaches and I feel nauseous constantly. However, instead of being fatigued, I just cannot sleep. I am very very tired all the time, but when I lay down, I cannot fall asleep. I am taking Melatonin (something produced by the pineal gland that regulates circadian rhythyms) which seemed to help for a while, but as I go on, it seems to help less and less. (I'm running on about 3 hours of sleep in the past 24 hours.)
Yesterday and today my symptoms have been especially bad. I haven't been able to go to school because of dizziness, nausea and vomiting, and headaches. These symptoms have been growing steadily worse.
I'm scheduled for a second MRI on Monday, and hopefully we will figure out what to do.
I have read a lot on pineal cysts and see a lot of people complaining of similar symptoms, and yet their doctors tell them their cysts are nothing to worry about. I find this too much of a coincidence to not be related.
Any opinions/help are appreciated.
Until then, I wish everyone good luck, and I hope things work out for you.

ErinsMom · Newbie Joined: 24 Feb 2007 Posts: 1

My 16 yr old daughter started with these headaches last weekend. She is not a complainer, but layed balled up on the couch sobbing because her head hurt so bad. After 2 Emergency Room visits this week, a ct scan, a lumbar puncture, and all kinds of labwork, all we know is that she has a 12mm pineal cyst and a thickening of her pituitary gland. She's scheduled for an MRI on Tuesday. She's been givin Darvcet for the pain, but all she's done this week is cry and sleep. I am scared to DEATH, and even more so now that I've been reading up on them, and how Dr's treat most pineal cysts as "nothing". I think I'll just lose it if the neurologist says that it's "nothing". Sad

abbygirl · Newbie Joined: 22 Mar 2007 Posts: 2

i am a 17 year old female and i've got a long health history. I am wondering if anybody has the same diagnosis as i have. I have a large 2.7cm pineal cyst that is pressing on different parts of my brain and possibly causing a blockage of spinal fluid. I have a long list of heart problems- mitral valve prolaps, heart mumor, SVT, and a right bundle branch blockage. I have high blood pressure, postural orthostatic tackacardia, polycystic ovarian syndrome, diabeties, irritable bowel syndrome, acid reflux, and yesterday my thyroid shut down within a few days of it working normaly. Within the last few months i have had a lot of pain in my head and lower back. I can't walk because of extream weakness in my legs. i can't hold my head up. i now can only use a wheelchair in stores(if i can go out). I have been in the hospital and was treated very poorly, (my doctor was very disgusted with them). I wanted to know how large a pineal cyst has to become in order to have surgery. I think it would be too risky becasue of my heart problems. If any of you have had surgery, do you know who would be the best place to go? Thank you.

Guest · Guest

hello everyone!
for the last 6 months i have been experiencing vertigo, lightheadedness, and fatigue. i am always tired. now the symptoms have gotten worse. im on disability and i never want to go anywhere because of the balance problem i have. i got my results back from my mri and it said i may have an issue with my pituitary gland and also that i have a pineal cyst which is 12mml x 15mml. is that big at all? im not sure. also is there a way to be cured from this? is this why i am dizzy or is there something else wrong? i have had urine and blood tests too and im normal. PLEASE HELP!

Guest · Guest

Hi Everyone!!! ( Abbygirl)
I was diagnosed with a pineal cyst in Feb of this year. After dealing with many of the same symptoms, and the doctors telling me that this was not the problem and just to come back for check up's. I found that NYU hospital has one of the best nuerosurgens in the world, and come to find out I had one of the largest cysts ever removed.. Yes , the other doctors were wrong it had to come out!! After a long surgery (march 15th) and even longer road to recovery , I'm doing MUCH better! If anyone has any questions about the surgery just ask for my e-mail and I'll answer any questions that I can...........

roxy06 · Newbie Joined: 17 Apr 2007 Posts: 1

I too am suffering from pretty much all of the symptoms as everyone else. The only difference is that I also have constant muscle spasms in my lower legs and in my right shoulder (this is fairly recent). I'm 38, very active, but am plagued by my vertigo and fatigue. I have a pineal cyst of 6mm and have been told that it's nothing to worry about. I live in NY, so if you could ABBYGIRL I would love to talk about NYU and how you made out.

KMS · Newbie Joined: 11 Nov 2006 Posts: 4

I too was diagnosed with having a pineal cyst. Mine is 2.1 cm and is compressing mildly on the tectal plate. I too was told not to worry. I do have to follow up with a MRI every 1-2 years. How big was your cyst before they removed it? Did you develop hydrocephalus and that is why they removed it?

Guest · Guest

I would love to talk with anyone who has knowledge of pineal cysts. ABBEYGIRL, I'd love to chat!

I am located in Evansville, Indiana. I am a somewhat healthy (I have had migraines and scoliosis for years), 35 year old female, teacher and mother of two.

I recently demanded an MRI due to a constant headache in the back, left side of my head, lack of sleep, forgetfulness and a weird sensation in my head that I can’t explain. I have had sleep problems for years and have been on numerous medications for lack of sleep and seasonal depression.

According to my MRI, I have a 1cm pineal / arachnoid cyst in my pineal gland. I have read the research. My family doctor and neurologist say that it is no big deal. My neurologist said I need injections in my head and I need to go to a sleep study. She says that this will make my migraines and the rest “head throbbing” go away.

I’m trying to get into a specialist in Louisville, KY (John Joseph Guarnaschelli).

Due to what I’ve recently read, I’m a bit concerned. I realize that I was born with cyst, but I more recently have had symptoms. My doctors say that my problems are not related to the cyst. I would like to believe this!!! How do they know that they are not?

Please help!!!

Pineal cyst and various symptoms

LIFEFORM SOCIAL COMMUNITY NETWORK