Pineal cyst and various symptoms

Hi there :-), 2 weeks ago they also diagnosed a pineal cyst. I'm a 29 year old girl living in the Netherlands. The pineal cyst is 1,5 by 1,2 cm.
I've had headache for the last couple of years. I always thought it would go away, or I thought it was psychical (because of emotions), so I never went to the doctor for it. But the last couple of months the headache became worser. I received 2 MRI scans, the last one with contrast liquid. The doctor here is not taking it seriously. He never saw something like this before! well.. that's really hopefull! I don't even know when the cyst is growing bigger how they are going to operate it. I'm going to have a second opinion in another hospital. In the past I always was tired (since the age of 16), I slept 10/12 hours a night, and still tired. Now I can handle it with only 7/8 hours a night. The headache which I have is just above my left eye. Does anybody is familiar with that kind of headache above the left eye, the doctor said it was not related to the cyste? What else should it be. How are you doing now a days? Greetings Marieke

hi My name is tina and in 2007 i had headache that nothing would take it away,after 3 wks i went to doctor had mri they gave me pills i finally got relief. thought finally its fixed by the 3rd day i was doubling the dosage because it stopped working. She had my mri said they found pineal cyst.Since then i have had mris that went from 8mm to 12mm but they still say it hasnt changed. I have been living off of viks for 3 yrs now i am lucky if i get 2 to 3 hrs of relief. taking about 180 a month n the doctors yell at me some even refuse to see me.No neurologist will admit that is what is wrong with you and there is no medication for it either because not enough people have it.I dont know if its true but i was told by someone that will be finishing nursing school this may that doctors wont admit to it because insurance companies will then pay them a set rate. So they would make less pay then diagnosing you with a chronic problem like migraines.and if you run out of meds under 30 days or go back to see that doctor until a month the insurance companies see them to be a bad doctor. I am still fighting to fix it. I wish you guys the best

Hi bentherebefore! & Tina,

I was diagnosed with cyst also on my pineal gland.  For several years eveything seemed fine until recently.  I seem oddly tired, where before I could never sleep.  My endocronologist stated that this gland runs our biological clock and the symptoms of not sleeping made sense.  so he helped me medically there and helped with thrying to get me tired and working out a few hours prior to sleep by walking ect.  Although I've dealt with migraines on and off for years receintly they have gotten quit bad.  So yes, I too am not sure what to do.  As I read your above discussion I felt as if I was reading a documentary about myself!  But yes you are so correct about one doing anything for you.  If this does not show major growth or hydrocephalus does not start you are pretty much on your own.  There also is a serious issue with your eyes though to look out for.  Apparently per some of my drs. this thing can land onto a main nerve or something that attaches to the optic nerve that is in the vicinity of where the pineal gland rests.  That can be a reason to go in and fix it.  It actually is an easy surgery...although remember NO brain surgery is easy nor safe!  But there is NO CUTTING into the head or brain as they go directly through the nostril into the area or they also go through the roof of your mouth.  But for me this possed a problem as I suffer with Sjogrens Disease and I offten wonder how many out there may have Sjogren's and this issue with the Pineal Cyst & Gland?

Something to think about.

Thanks and good luck.  Patti

For the past 2 months, I have been suffering from severe headaches. I've had 2 MRIs, both confirm the presence of a pineal cyst. My GP, however, has not told me the size of the cyst, nor does he seem to be concerned that the cyst is what is causing my headaches. I'm going to the neurologist this week, hopefully to get some answers.

My head hurts so badly that most days I cannot get out of bed. I have pain behind my eyes...I feel dizzy and sick to my stomach. And the fatigue is horrible.

My GP only tried ONE migraine medicine to ease my symptoms and then recommended I have an eye exam. He felt that was the source of the problem. I am proud to report that I have 20/20 vision, but that leaves me right back at square one.

I have tried every over-the-counter medicine, looking for some sort of relief and nothing works. Even the pain medication I was given at an urgent care facility does nothing to relieve the pain. Has anyone found anything that works? Even if only for temporary relief? I have found that a cold pack can help soothe the throbbing, but that's about it.

Guest wrote:

When you say that you have to sleep and your limbs are going numb, these sound like symptoms of narcolepsy. You may want to look into that.

Guest wrote: I have been diagnosed with a cyst on my Pineal gland my doctor to also told me not to worry.  But now im having symptoms of severe migraines I've been in the hospital more that 4 times for it.  These past months its gotten worse  I wake up wanting to puke my eyes feel like they are bulging out of my head when i try to go to sleep.  I've only had 2 hours of sleep in 2 days.  And all of the sudden I'm having rapid weight loss,  one day I can eat like a pig and the next day my stomach is so upset that I can't eat anything even though my stomach is growling.  I've been very weak and don't want to go anywhere and  I'm 21 and I feel like im 50.  So if anyone knows anything plz reply.  I dont think i can take much more of this

Please don't feel alone and I am the same as you and still refuse the anti depress meds and stronger they keep trying to force on me! I am 30 with 3 kids and the lack of help out there is so scary, but reading all of your post knowing we are not crazy is comfort! I think we all want our life back.. My credit has taken a huge hit because I keep looking for a dr that will listen to me, but I won't give up :) hope things have gotten better for you.

I recently was diagnosed with a pinal cyst as well, after them finding it on accident because i was sick and in the hospital. I had two MRI's done, and the dr told me it had nothing to do with my headaches and feeling sick all the time, i can not sleep. I am on melatonin as well, 9mgs per night but most times i just lie there. I find it odd that i read all these forums about them and people just like me have the same symptoms but my doctor says they are not related. The headaches started around the same time as the not being able to sleep. They wont give me anything for my headaches so most weeks i go with a headache for 4-6 days and am miserable. I just dont know what to do, my doctor says surgery isnt needed, I am only 25, i do not want to have to live the rest of my life with headaches and no sleep.

I to have a pineal cyst, 1cm. I cannot sleep, I am running on 3 hours of sleep a day. I have had a daily headache for the past 2 months. My vision has gotten increasingly blurry.

My Neurologist just recently started doing nerve blocks on me and its helped the headaches a great deal, as for not being able to sleep i know all too well how that is. I get so anxious because i know i can not sleep and it makes it ten times worse.

I would love to talk about this. I too have been diagnosed with a pineal cyst. Over the past 3 yrs I have been told that I have probable MS to explain away the various neurological symptoms, but after a week in a neurological ward have been told by a team of neurologists that I do not have MS. The only abnormality is a cyst on the pineal gland. I've been told that it should be completely asymptomatic, but here I am....... constant headache, mainly down the left side of my head. Constant fatigue not alleviated by sleep. Sudden weight gain. A feeling most days of having my head squeezed in a vise, or wearing a motorcycle helmet that is too tight. I'm in Canada (Calgary, Alberta) and have been told that Alberta Health does not cover the cost of treatment or removal, because they firmly stand by the notion that there should be no symptoms caused by this cyst. So right now, they are trying to tell me it's "all in my head" and I need psychological help. They are completely ignoring the fact that my balance is so bad, I frequently fall just by turning my head. My eyesight appears to come and go...... sometimes 20/20 vision, and sometimes up to 75% less than that. I'm at my wits end, and just about to go out on disability myself. Not knowing which way to turn for help. I so want ME back again..........

I too have a pineal cyst 9.8 mm; I to get musle spasms, in legs, face, feet and basically all over and can you see it because I can

DITTO If the nuro i see tomorrow does nothing im going to yhe mayo clinic

Seriously you need to find another doctor.The headaches are caused by the cyst.I have a friend who had one removed recently because he had headaches and was having seizures as well.You really need to get new doctor.

Hello, my son is 24 and has a 1 cm pineal cyst/Tumor. He suffers daily with headaches, nausea, some vomiting, sleep problems. Neck Jaw and ear pain. When he first wakes up he is very stiff, moves like someone quite elderly. And yes. Hairloss which started when he first starting get sick which is about 3 1/2 years ago. I to have wondered if the hair loss could be related to this. We live in Canada and there have been some Canadians going to the skull base institute to have these removed. Would be interested in speaking with you. You can email me. Very curious about the hair loss