Aa
Aa
A
A
A
Close
Avatar universal

pineal gland cyst

Ifound out about six months ago that i have a pineal gland cyst, Here in the last 2 weeks i have had a nonstop headache, but the past couple of  days it has been severe and over the counter meds arn't helping. It is starting to make me sick to my stomach and i have been getting dizzie, should I be concerned?  What do I do?
7 Responses
Sort by: Helpful Oldest Newest
Avatar universal
I was diagnosed with a smal pineal gland cysts about 3 months ago when I went to the E.R. for a headache that was on-going for days. Nothing, not tylenol, advil, excedrin migraine and even 2 other prescription migraine drugs helped even a tiny bit. I knew something wasnt right. this wasnt the first time i was hit with this headache. It always seemed to hit in the exact same spot on the left side above my temple. pain was even felt behind my left eye. The ONLY thing that seems to work is percocet which was prescribed by the E.R. doctor that one day. Now im pregnant and clearly i cant take percocet or recieve a CATScan or MRI, but the same exact headaches continue to come back worse then ever now. Its mainly at night, but had hit in the beginning and middle of the day. All im looking for right now is to see of theres any way to find relief of the pain. It is now 4 AM and here i am on my lap top searching for answers because I have a daughter and school to wake up for early in the morning. The throbbing pain, in what feels like random shocks of electricity going through the left side of my head, is preventing me from being able to fall asleep, as it has plenty of nights. If anybody out there has found SOMETHING, ANYTHING that helps relieve the pain please inform me. Im only 3 months into my pregnancy and sometimes I dont know how im going to get through the next 6 months without any drugs or further help. I greatly appriciate it

-Stephanie
Helpful - 0
1 Comments
Hi Stephanie--just curious, i know this was from a long time ago, but did you ever find any relief or any answers?  Did your pregnancy go okay? Do you know if your cyst grew at all during pregnancy?  I have recently been diagnosed with a large pineal cyst and am looking for answers, possibly want to start trying for a second child soon but obviously don't want to do that dealing with the headaches and all the testing I've had to have with this diagnosis.  Just wondering if you ever had any further treatment for this?
Avatar universal
The Pineal Gland's purpose is to regulate sleep via melatonin production, correct?  Adults, as I understand, begin having calcified glands as we age.
Helpful - 0
Avatar universal
Hi there,
I have a pineal gland cyst 1.5cm and a low grade glioma on the left front hemisphere of my brain.  I just found out through months of being sick, still am, and the first ct of my life in january followed by mri for the 'cyst'. I also have 3 fibroadenomas in breasts and a lipoma in my neck i might add.  I have had good and awful luck with doctors, leading me in all different directions.  Sick since october I presented in january at the er with the WORST headache of my life after a month of progressive faintness, vertigo, nausea, headaches and general apathy and weakness in trunk and arms, insomnia, depression.  I had some sort of anxiety attack i was told, seizure I was told, but no one seems to know the real cause for what is happening. Characteristics: feelings of faintness, world fading away, hearing fades out/muffled, confusion, disorientation, weakness!!, breathing heavy can't catch breath, numbness/intense tingling in hands, face, legs, abdomen, nausea, sometimes lasts for 5 min to a few hours and leaves with a feeling of warmth in my face and sudden calm in my chest.  I don't have a family doctor to 'watch over' the procedures so i've been researching on my own and with help of my aunt who is a nurse and cancer researcher.  I have been recommended amytriptoline but I also have a 1st degree heart block, asthma and celiac disease which make me weary of trying new medications that may interfere with my other conditions. Currently, all i've been taking are Tylenol 3 for head pain.  I'm not keen on trying anti-depressants for the melatonin/serotonin complications with pineal cysts so i'm looking into other ways to increase these hormones in my system.  Another MRI in 6months has been ordered to see if these growths are growing!! I hope I can shrink them before that time......but in the meantime.....how do I cope with the debilitating symptoms if the doctors don't know what's causing the symptoms??  Frustrated and confused........
J - Toronto, ON
Helpful - 0
Avatar universal
Neurologists may be very quick to tell you that you are fine with a pineal cyst and that it is not causing your symptoms.  But beware:  1) Doctors in general don't really understand what the pineal gland does; and 2) Some don't seem to understand the difference between symptomatic and asymptomatic pineal glands and tell their patients not to worry about pineal cysts.

Some things to keep in mind, according to the medical literature:

1) The most common symptom is headaches, followed by vision problems and dizziness, and in some cases insomnia, nausea and cognitive deficits, particularly if cognitive deficits are involved.  More rare is numbness and tingling.  In extreme cases, pineal cysts can result in loss of consciousness and seizure disorder.  So please take this seriously, particularly if the cyst is causing intracranial pressure such as hydrocephalus.
2) Pineal cysts can be symptomatic if they are larger than 0.5 cm.  Problems occur when the cysts cause compression in the brain, or when they are associated with apoplexy or hydrocephalus.
3) Radiologists cannot easily distinguish between cysts and benign tumors, often leading to misdiagnosis.  NOTE:  A benign tumor is not metastatic, not malignant.  It is extremely, extremely rare to get a malignant, metastatic tumor in the pineal gland, so please do not worry about this unless your radiologist/doctor has told you otherwise.
4) It is common that patients are told that the pineal cyst cannot be affecting them after a neurological test.  But note that some patients present no neurological symptoms in these tests, while still having the symptoms in 1) above.
5) If you are in the 18-34 age group, your cyst can grow, so you should get MRIs every 3-6 months.  If your doctor does not want to, get a new doctor.
5) If you have to get surgery, get the following one but only if you have compression or hydrocephalus and your symptoms are incapacitating:  Suboccipital craniotomt with infratentorial-supracerebellar approach and microsurgical resection of pineal cyst.  Contrary to what is stated above, this is NOT brain surgery.  They access your pineal region from beneath the brain, so they do not affect your brain at all.  It sounds like a scary procedure but is actually straightforward for a good brain neurosurgeon.  The surgeon essentially inserts a microscopic endoscope that magnifies the area by 50x and uses a navigation system to get him there.  It is minimally invasive.  The medical literature says that most patients whose pineal cysts are not too large (e.g., < 4.5 cm) become completely asymptomatic after surgery.  The surgery entails a 6-8 week recovery, and a small incision in the head and removal of skull bone, which grows back after surgery.  The biggest risk associated with surgery is infection, as with any other surgery.

The most important thing is to get a doctor who takes your pineal cyst seriously.  It is a rare disorder, and few doctors understand it well.  So you will need to be persistent.

Good luck.
Helpful - 0
Avatar universal
The Medical Community simply dont know how to treat a Pineal Gland Cyst.They will lie to you and tell you it is incidental.You will be made to feel as if you are a drug addict and a Hypochondriac.My wife was diagnosed with this Cyst exactly a year ago and We are still in the same position We were in then! I am so angry I could literally throw our Neurologist from the top story of our hospital.There is something SPECIAL about this Gland and the Doctors know it.Do a little research into the Mystical properties of this Gland and you will be very surprised.An English Author and Documentary film maker Philip Gardinar wrote a book called "THE SHINING ONES" with some fascinating information in the 2nd chapter about the Pineal Gland.Please read this and then think about why your Neurologist is so vague and dismissive with you.Its an absolute disgrace the way We have been treated and going by the similar comments on this Forum We are being dismissed and given the run around.Remember People We are all special and entitled to fair medical treatment.Dont just go home and suffer the agonizing pain of this condition,thinking Your Doctor is some kind of god.Push them for an answer and get the respect you are due.I sincerely hope you find some form of relief and will keep you all in Our Prayers.My wife has been given Propranolol,Amytriptimine,Morphin,Codein,Proclooperazine.Prozac,Diazepam you name it We've tried it!!Good luck
Helpful - 0
Avatar universal
I have to disagree about the pineal cyst not being the cause of the headaches.  While there isn't really a way to know for certain, there are many, many people with pineal cysts who will confirm that they can cause severe headaches, along with other problems.  Yes, "most" pineal cysts are asympotomatic.  But once they reach a certain size, they can start causing problems.  
Helpful - 0
3 Comments
So how and where can you get help????
Hello 7644, do you have this same thing?  Perhaps starting your own post will result in more answers for you.  
Here is information on pineal gland cyst  https://rarediseases.info.nih.gov/diseases/10723/pineal-cyst  These sometimes are treated by removal or aspiration depending on size and other factors. Please tell us more so we may help you.  Best
351246 tn?1379682132
MEDICAL PROFESSIONAL
Hi
Thanks for writing to the forum!

I would need some more medical details before I can really help you out. First of all, was MRI or CT scan of brain done? If yes, then why?  Headaches? Pineal gland cysts are usually asymptomatic. Infact, it is rare for them to cause any symptoms. Your headaches are not due to this cyst. They can be due to migraine or tension headaches.

Dizziness and feeling sick in stomach could be due to over the counter pain medications you are taking. First of all you can take some antacids to get relief from these acidity symptoms. Then you should get an appointment with your doctor and get yourself investigated. You could also be having high blood pressure. Headaches could be due to high blood pressure. The cause for headaches need to be investigated.
Please let me know if there is any thing else and do keep me posted. Take care!

Helpful - 0
2 Comments
This is the problem.  I t might be rare for such cysts to cause headaches, but nevertheless, they do in many occasions.  
please give us the names of doctors who deal with this cyst to help with unbearable headaches not receptive to many, many meds!
Have an Answer?

You are reading content posted in the Migraines and Headaches Community

Top Neurology Answerers
620923 tn?1452915648
Allentown, PA
1780921 tn?1499301793
Queen Creek, AZ
1756321 tn?1547095325
Queensland, Australia
Avatar universal
Trinity , TX
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease