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Hello, I am suffering from prolactinoma. It has been diagnosed month and a half ago. It is macro adenoma, it developed fast and my health status was worse each day. My menstruation was irregular, vision too, but I never thought that this might be a tumor. Since I had eye sight problems, I would like to know if the seizures are common for the patients diagnosed with pituitary tumor.

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Basic rule is that all brain tumors might lead to seizures, but this is not something common for pituitary tumors. Main reason is that pituitary tumors have obvious symptoms (menstruation loss, eye vision) so they are discovered relatively fast. This means that the treatment starts in time and then meds and even laser therapy will help you deal with this situation.
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unfortunately i have a giant pituitary acroadenoma and i do have seizures. just be prepared and pray
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my daughter has prolactinoma. she was diagnosed about 4 years ago. shes never had one siezure from it. her prolactin level was about 69...so, it was definately active. she had all the classic symptoms of it. but never a siezure. I dont recall the name of the med she is on for it. she takes it once a week. after a year her prolactin level is normal. the mri shows the tumor is still there...which is normal..the doc told her..it could take 5 years for it to be gone. I guess the liquid tumor hardens...shes getting there...but not all the way yet. but, never one seizure...
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Hello, I'm in sort of the same boat, I was diagnosed with prolactinoma in 2007 (21). I was showing symptoms since 2000 (14, lactation, ed, headaches, ect.) but I was afraid to go to the doctor. Anyway, I got diagnosed, and Jefferson University Hospital in Philly started treating me with dostinex. I went to an endocrinologist at jeff and we got my blood work back and my prolactin level was down to 31 from 207, but my tumor grew a millimeter to 14mm. So i got a nice little "we messed up" talk. But on to seizures, In 2001 I would have little episodes of if I arched my back a certain way, my vision would go really blurry my hearing would sound kinda metallic, and I wouldn't be able to hold my head up, it would fall to the desk, or once in a while I would fall out of my chair (I sat in the back of the class so no one really noticed except brandon who sat next to me and he thought it was funny and we would laugh about it later, the episodes only lasted 10 to 20 seconds). Back then they were very infrequent, although now at 23, they happen 2 to 3 times a day. I should state that I might have mislabeled these as seizures I don't know exactly what they are, I was just hoping for some help or insight. So this past sunday was my worst episode, I was enjoying a healthy and detectible breakfast of pop tarts and motor oil (motor oil would probably be more healthy then the poptart) my back was hurting I arched it a bit, my vision went black, my hearing went metallic and sounded like I was in a cave, and I herd everyone screaming, but it didn't register that everyone was screaming or why they were. I was told that my face turned bright red, then pure while, my tongue fell out of my mouth I put my head on the table, started shaking, fell to my left on to the floor and started shaking in the fetal position. So that little episode left me with a fun filled sunday at the emergency room, which told me nothing, they took a cat scan and x ray of my neck to make sure i didnt hurt anything on my fall, and took blood work then let me go with a paper saying they dont know whats wrong with me, (seems to be a theme) I dont know if anyone has anything similar to this, but I was hoping to find out if maybe it was related or not.
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I have the same problem. I had a pituitary macroadenoma removed in 2003. In 2010 I started have tremors, then full body shakes, and I now have "seizures" anywhere from 5-10 times a week with each episode lasting up to 3 hours now. I also started loosing consciousnous in mid 2011 and do not remember the events before my event. I have seen over 20 neurologists and they all say that they can't help me. They have literally said that their plan of treatment is to medicate me and hope the condition goes away. I am now 30 and looking at not being able to return to work until I receive help. If you know of anyone or have learned more about your condition please respond so that I can try to get help.
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YES, pitutary tumors can cause seizures, but not in all patients. I had a large pitutary tumor that developed quick with relatively low levels of prolactin. My tumor was 12mm with prolactin levels only measuring 50. According to my Endo, tumors of this size usually occur when prolactin levels are above 150.

Back to the seizures, my seizures began occuring AFTER the tumor removal. Medications were not an option for me because my tumor was hemmoraging and was pressing heavily on my optic nerve--causing blindness. Needless to say my vision was saved, but the seizures and chronic migraines still continue. I have been diagnosed with complex partial seizures, which only distribute signs of memory loss, confusion, staring, and sleepiness after it has passed. At first, my neurologist assumed my "symptoms" were all due to the chronic migraines I was experiencing, but after nearly 8 months of little improvment, she scheduled an EEG which confirmed seizures. I am currently taking medication to control my seizures and have NOT lost any function within my everyday life. However, it is important to know that without the proper treatment for seizures--however minor they are now, they DO PROGRESS throughout your lifetime, so if you haven't gotten proper treatment for them, I strongly suggest you do so quickly. You could seriously injure yourself or someone else while driving or doing normal, everyday tasks. I was on a 6 month driving restriction, can't swim, use a stove, iron without supervision, etc. but will be taken off these restrictions within the next few weeks. It's all worth it knowing that I am doing all that I can to keep myself and those around me safe. Also, if I for some reason I forget to take my seizure medication, I experience anywhere from 2 to 6 seizures a day--all lasting anywhere from 20 seconds to 2 minutes. Good luck!

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I am currently 56 yrs old got diagnosed with prolactinoma when I was 28, but had suffered the systems of lactation, irregular periods and headaches since the age of 16.  The doctor (Endocrino) had never had a case like mine before nad I had done the research and diagnosed myself.  After runnning the blood work and preforming CT scans, Tomograms, and MRI's, they claim to have found a 2mm prolactinoma.  The doctor began threating me with Bromocriptine.  The drug was almost unbearable to tolerate, but after two years my periods became regular, my prolactin level dropped to 19.  Doc took me off the meds after a year and monitored my levels.  got pregnant.  Healthy baby girl.  When my daughter turned two my levels increased, the milk returned and my periods stopped again.  I was placed back on the meds which helped and a year later I got pregnant with my 2nd child, didn't know I was pregnant because I wasn't having a period just kept getting sick, thought it was the meds and put me on antineasa pills.  The doc went nuts when he found out.  Ordered all types of test; mine you I'm 35 years old by now, had to an amniocentesis done.  The Doc took me off everything.  Everything came out fine had a healthy baby boy.  Althought I did get gestational diabetes which cleared up after the baby was born.  So did the prolactinoma.  I have not had an more issues with my prolactin levels since.  But when I turn 50 I began having seizures.  Over the late 6 years I've had a least 12, this last year have been the scaries only two but the worse.  They started as peti mal but but are growing into grand mal and the Doctors dont know why.  I Wonder??  Will I have to diagnosed myself again?

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I have a null cell pituitary adenoma (8mm). They found it due to multiple low hormone levels that led them to do a MRI so it's not incidental. They said a rumor that small wouldn't cause the hormone deficiencies and I've spent years suffering while they tried to figure it out. Then last year I began having seizures and went into acute adrenal insuffiency. They ignored the possibility until they nearly killed me. Thankfully I'm a RN and demanded them to check my cortisol and ACTH levels. A high dose cortisyn test is the gold standard for adrenal insufficiency but misses nearly 80% of secondary insuffiency due to a tumor. It wasn't until I went into crisis that doctors acknowledged they messed up. A tumor effects people differently regardless of size or type. Some symptoms, such as with prolactin levels, will be consistent, but it depends on which part of the pituitary the tumor is pressing that determines what symptoms and their severity that you will experience. They have done their EEGs and video EEGs and know where the seizures are coming from, but because my tumor is small it has not been removed. Now we are left with the challenge of controlling seizures with one kidney and autoimmune liver disease so medication therapy is limited. Your experience is going to be different than anyone else on here so pay attention to your body and make sure the doctors are listening to you. A video EEG will tell you for sure if seizures are originated from that area. Good luck.
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My name is jade. My dad had his pituitary gland and tumor in 200 and 18months later he began having seizures. He's seen lots of professionals been to the er numerous times but all they say is its scar tissue causing the seizures and for them to remove it would provide relief for a short time but the seizures would come back worse once more scar tissue developed. It seems he has very little quality of life anymore. Has anyone been through something similar? Thanks everyone! 

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I have a Pituitary Adenoma relatively small (10mm×7mm). I also have similar seizure like symptoms called petit mal. It comes on as an aura of sounding like being in cave. my hearing is augmented with hallucinations/ dreaming of what's around me. As much as I can remember drooling and head moves back, but luckily I was sitting when they occurred. I've had 5 in past 2 years. I've always had auras for 20+ years which I dismissed as anxiety. I'm on Keppra extended release which seems to be working.
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Hello, my name is Tamaka and i found out i have two smalls cysts on my right and left side of my pituitary glands and i have a tumor on the top of my pituitary gland on the top of my brain. Before i found out i had this i have horrible headaches and passing out and anxiety and i have been very angry. After i found out no dr would see me cause i didn't have ins. So now i am more problems, my eyes hurt and i see spots that are black and green, at times when i get a really bad headace i see an aura and i black out and i don't remember what happen in between. Can someone help me?

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Hi Tamaka. So sorry you are in a scary place right now. Just wondering why you are not on Medicaid (at least) if you don't have insurance for financial reasons. I was on medicaid for a little while before qualifying for Medicare. It's not ideal but it does open up some options for being able to get treatment. Also, applying for SSDI if you haven't already is a must as your condition should qualify you. A very good company I used to file the SSDI paperwork for me is called Allsup. I heard all these horror stories about people being denied SSDI when they tried to apply on their own. Allsup doesn't take any fees up front and only takes a small percentage of whatever you are awarded. Sending you thoughts and prayers.
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I was diagnosed with have a pituitary brian tumor in December 2015 i have had over 65 seizures since then and never had a single one prior to the day i was diagnosed from what i have noticed for my self and have been told by doctors heat and stress can both put pressure on the brain which can cause a seizure. A few doctors have told me that the 2 are not related but they were not there until the tumor was so if i were you i would try to stay calm and in the ac as much as possible plus you may need medication to keep you from having the seizure. Althought the medication only works half of the time the 2 or 3 a week i have is better then the 17 i had in one day when i first found out. Good luck and if you find out more info on the connection between the 2 please share
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Interesting. These responses have been very informative, esp. yours. I was also a healthcare worker, but demanding things got me even less help. Frankly, I knew too much and they didn't like it.
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