pineal cyst

I am a 28 year old woman who also has a 9mm pineal cyst. I am so frustrated because my nuerologist is also telling me that none of my symptoms are due to the cyst. However I suffer from severe headaches all the time, dizziness, vertigo, loss of balance and memory. It is ridiculous. I have diffuculty sleeping, I have slurred speech, anxiety and depression. All in which they have treated with different medications that don't work. I am always tired. It's affecting all aspects of my life dramatically and all the doctors do it continue to prescribe medications that don't work. And tell me that it is completely unrelated to the cyst. I truly believe that they are and i just don't know what to do about it. Any suggestions?

I posted a paper on this site. They let the link stay so it should be somewhere in the thread but, in short, research fluoride. If your water is fluoridated and you are using fluoride toothpaste this could be the cause of your symptoms and the cyst. Fluoride is a poison that causes those very symptoms and is ultimately deposited in your pineal as proven by various studies. Get a filter on your shower quick as chlorinated water creates chloroform steam with these very symptoms as well.

peterbajwa2006 wrote:

kellir wrote:

I am a 35 year old woman who was diagnosed with a pineal cyst, 9 mm about 6 monhts ago. I have a follow up MRI next week to see if it has grown. I, as like everyone else, was told this is noway causing any of my symptoms. I find it odd that everyone who has a pineal cyst also has the same type of symtpoms. I have horrible daily headaces, my sleep patterns have changed dramatically, I have depression, and this has not resolved with 6 different anti-depressants that have been tried so far. I have horrible dizzy spells. I will just be sitting, looking at computer, or watching tv, and all the sudden i feel something in my head, (feels like something drops), and then i get real dizzy, unsteady, sometimes nausea. The original spell will last about 5 to 10 minutes, then go away, but I feel "off" for sometimes up to 2 hours after. This started over a year ago, but over the past months has gotten worse, to where it is a daily thing. So far, they don't seem to care (my drs.) or take this seriously. Now I have been diagnosed with PVCs. I have never had heart problems before. They assure me this has nothing to do with the cyst either. I often have right eye pain, it waters for no reason. It will get blurry vision, and wiggles back and forth. I seen an Eye doctor who did a peripheral vision test, which was okay, and a dilated eye exam and was told that was okay also. Yet it continues. I am tired all the time, and just getting very frustrated all of this this. Noone will listen to me. My last visit, I was telling them all these things that are going on, and they told me to see a shrink! I am so upset, the dizzy spells and the headaches scare me. Any advice on what I can do? I am not a complainer, and i have gone from a fun loving person, to a moody, grouchy, short tempered person. I have memory loss, which seems to be getting worse. Noone cares though. Noone will listen. I feel for all of you out there with a pineal cyst.

You DO NOT need to see a Shrink. You need to find a better Nuerosurgeon who will operate on you and remove this lesion/cyst from your pineal gland. I too havea pineal lesion/cyst about the same size as yours .. I too have PVC and vertigo and head pressure and depression .. is this a coincidence? I am only 26 .. i have suffered now for over 4 years .. is this a coincidence that both of us are suffering and being told the same thing by doctors? .. NO it is not.  ***this post is edited by moderator *** *** private e-mails not allowed*** Please read our Terms of Use
I want to hear from everyone who has pineal lesion/cysts .. and also your family members too .. please lets all get together and take action and make a change in the system.

my name is peter .. male 26 very healthy and strong mentally .. but now turned into a zombie due to the Pineal Lesion/cyst .. Pineal lesion is to blame for our vertigo/balance issues, anxiety, dizziness, vision disturbances and many other symptoms.. don't let your nuerosurgeon or other doctor tell you that pineal lesions don't have anything to do with it.. they are wrong.. Just look online and you will see the evidence. REAL people like us .. same kind of problems .. same kind of symtpoms, same miserable lives .. why? because the system has failed us. they refuse to help. the doctors are uneducated in this field.

i intend on taking major action against this disease. we can make a change.

God bless.

Peter B.


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Peter I agree! There are no studies, and quite healthy people all of the sudden plummet! I am 30 yrs old diagnosed 2 yrs ago after suffering from massive anxiety attacks and horrible headaches! Everyone thought I was going crazy including my family the attacks were so bad I thought I was dying or at the least having a stroke after one bad one it took weeks to get my focus and coordination back. No real help still to this day although my symptoms are much better since I said to heck with all the Ativan, and other anti depress meds. I have 3 wonderful kids and I want to live normally! Would love to walk in a hospital or dr office with a group of us non symptom pineal gland cyst sufferers and request a real study and real help for us and people in the future.

I am so happy to have found this site and the peace In knowing I am not crazy or alone! It's so sad we all have the same symptoms, the same pineal gland cyst, and the same answers from our doctors! What the heck are they so scared of that they can't do a study or admit what the heck is going on! I have a Facebook page name is misty Tolle please feel free to contact me none of us should have to deal with this alone! I am 30 yrs old, have 3 kids and not even much support from my husband or family because the drs think I am crazy why not hear them out try their crazy pills, rush to the er from panic attacks thinking your dying! Its awful and I am very sad to hear so many kids suffer from this to I am grown and don't know how to cope sometimes! Good luck to all of you and may God bless you!

I am a 38 year old woman who was diagnosed with a pineal cyst 7 years ago following a car accident. I was experiencing severe nausea and vertigo immediately following the accident, and returned to the hospital for more testing. They did a CAT scan, and then told me to return for an MRI. It was then that they told me my symptoms were partially from hitting my head in the accident which caused my brain to slightly swell, and because there was a cyst present, put pressure on the fluid flow to my brain. They put me on meclizine which greatly helped reduced my symptoms and made it possible for me to drive again. This first episode lasted and I was on the medicine for about 6 months. In the past 6 years I have had about 5 episodes. They usually last from 1 to 6 months, and include all the symptoms previous people have mentioned. (Nausea, headaches, vertigo, mood changes, problems sleeping, fatigue.) Everytime I go back on the meclizine and it seems to help. I did a little research and found that these types of cysts are much more commom in women than men, and a lot of people won't even know they have them unless they get a head scan for something else. My most recent episode started 4 days ago. I started in with the meclizine 3 days ago and am finally seeing my symptoms subside. It might be worth mentioning to your doctor, and maybe they could prescribe these meds.  

i just took my 4 yr old who has a pineal cyst to dr hudgins at akron hospitals neurology dept in ohio, usa. he is amazing and tells you all about the possible symptoms an details about the potential surgery. he totally understands this condition.

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 is the phone number. they will send you information or talk with you about it. best of luck.

Thank you Peter hope you get somewhere with this

I tto suffer with this even my writing has altered my words come out all funny i have all the symptons you've mentioned the Dr put me on pregagablin 4tablets a day for the pain in my head it does help but its still like a dull ache stiff down one side affeccts that ear had that syringed thinking that would help nothing in it feels like its blocked up

all the best peter

God bless

patricia

I'm a 21 year old female. My headaches have became chronic and my moods have become so depressing, I also have nausea like 90% of the time! I was told it was all in my head until I went to a neurosurgeon in Houston, Texas his name is dr.Dong Kim. He was excellent! He found my cyst it is 9 mm too. He told me I needed to do an operation so I don't live my life in pain constantly! I trust him completely because a year ago he did brain surgery to my mother also and she is better than ever!

Have you been tested for multiple sclerosis? Symptoms are very similar to what you have explained. I have ms, a pineal cyst and a micro tumor on my pituitary gland. So many of the same symptoms. I hope you are doing well now.

Another wonderful team of doctors in the Houston-College Station area are Dr. Toussant and Dr. Friedmann. They removed my daughter's cyst, and she is now recovering beautifully. They are very thorough in explaining everything as well. They are at the Texas Brain and Spine Institute here in College Station, TX.

Could you tell me the name of the doctor?

my name is lawrence, 45 years old and got an MRI done after i was having visual disturbance with twitching and headaches and spasms in my eyes. MRI revealed a 12mm pineal cyst and i asked if that could be the problem with me. short answer was no, don't worry it's not blocking anything :) they diagnosed me with blepheral spasms and oct. 27, 2012 the diagnosis is dystonia. i wish they would do something with the cyst if only to ease my mind but at least with the Dystonia there is treatment. i know it's not what you want to hear but after watching videos on Youtube about it, i was amazed at how many of the treatments i'm suffering from is from Dystonia and they are Treatable from TMJ orthodic implants. it's sunday and i'm calling tomorrow to see if i can find a doctor to treat me. it wasn't what you wanted to hear but there is literally millions of people suffering from these terrible symptoms and knowledge may set you free. good luck to you, i have lost almost everything myself. please don't dismiss my advice it will only take a few minutes to check it out :) l

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I have also been diagnosed with a pineal cyst and have all the symptoms described with the addition of numbness/tingling. I have also heard the same from my doctors as you all about it being not related, but I have found some people raving about the skull base institute in LA, CA removing them and the immediate relief of symptoms. They use a different technique that is less risky, but I am afraid this means my insurance will likely not cover it, and how to earn the money in the mean time with all the confusion, dizziness and pain I don't know. Best of luck to everyone, I hope more in the medical community will start reviewing the data. My last MRI yesterday, just a wait and see now.

I have no idea Kellir if you will read this since this was six years ago. But I am in total agreement with you. My pineal cyst is 2.0cm and I have every symptom that you have. I got sick at work four months ago and about passed out and I went to the hospital and they did a CT scan and found this and went on to have the MRI. Same ole song and dance from my neurologist about that he didn't think my headaches were coming from the cyst. Treated it as if it were migraines and I have nine different medications that either make me feel worse or does nothing at all and I took them long enough to make sure I was getting the full effect. I have now seen one neurosurgeon that said virtually the same thing and wants to do another MRI and wanted to wait six months and I told him I could not wait that long and he bumped it up to three months. I told him I couldn't work and I had to put school on hold as I am a 56 year old female that has decided to go back to change my career and I don't have years to work if I am healthy so time is ticking and I can't further my education because of concentration issues. I have everything that you listed however they have not discovered hydrocephalus but I now am feeling fluid in my inner right ear, a girgling sound and I have no idea if that is coming from this or not but it alarms me. I do have another appointment this week with another neurosurgeon and he is from a very prestigous learning hospital and I hope he has a different approach. No I am not keen on brain surgery but if I can get back to normal with it removed then I want it out.....Please give me your current take on your situation.

I am 31 yrs old, over the past 3 yrs I have had a significant amount of weight gain (30+ lbs), frequent numbness in my left arm/hand/finger tips, and more recently (within the last year) have had: a major increase in my sleep patterns (up tp 16hrs at a time), severe mood changes, reoccuring ringing in my left ear, a painful sensation in the base of my skull on the right side (sensation last 20-30 seconds and feels like "brain freeze"), slightly blurred vision, memory loss/trouble with my thought process, and tend to be a bit off "balance" more than I like to admit. I recently took these complaints to a PCP who ordered a MRI w? & w/o contrast. Results are in today and I am told I have (and I quote) " a small simple pineal cyst". It also reports "there are few like foci of increased t2 signal in the deep periventricular white matter regions. These are compatible with ischemic/gliotic changes, or could represent the sequela of migraine headaches." Please note, I have never had a migraine heahache and ischemic changes are a decrease in blood flow to the brain... small changes represent "mini-strokes". As with everyone else posted on here, My PCP and the MRI Imaging consultant seem to think all of this is "Unremarkable" and no need for worry. I have been referred to a Neuro DR for consultation, but cannot be seen for at the minimum 7 weeks. I too find all of this to be pretty coincidental considering my syptoms and the results on the MRI.