A little bit of info about Pseudotumor Cerebri to all who don't know what this disease is...
Pseudotumor cerebri (PTC) is encountered most frequently in young, overweight women between the ages of 20 and 45. Headache is the most common presenting complaint, occurring in more than 90 percent of cases. Dizziness, nausea, and vomiting may also be encountered, but typically there are no alterations of consciousness or higher cognitive function. Tinnitus, or a "rushing" sound in the ears, is another frequent complaint. Visual symptoms are present in up to 70 percent of all patients with PTC, and include transient visual obscurations, general blurriness, and intermittent horizontal diplopia. These symptoms tend to worsen in association with Valsalva maneuvers and changes in posture.
... I was diagnosed with Pseudotumor Cerebri my sophmore year in high school. I was on a medication for my severe acne and I didn't know I was allergic to it. The medicine caused me to slowly loose my vision. After six months of being on the minocycline, I couldn't see at all-everything was blurry. I had constant pain in my ears and my neck and terrible headaches and I couldn't concentrate in school. I started to not be able to see the blackboards in school. I was admitted to the hospital within a day of seeing the eye doctor and went through 2 painful lumbar punctures. The doctors said there was so much fluid build up in my head and it was putting pressure on my brain. I would have lost my eye sight within days. Luckily I came to the hospital in time. Also, I was also diagnosed with hypertension. To conclude, I never got back my 20/20 vision. This caused me to now be near sighted and wear contacts permanatly.
So my main reason for this post is that I was just diagnosed with PCOS two weeks ago. My doctor just prescribed me Metformin. I am still very overweight from my Pseudotumor Cerebri days. I still have terrible headaches and my eyes feel strained all the time. I hope this disease isn't coming back or if it's at all related with PCOS? Has anyone every had Pseudotumor or any of my new symptoms or any feedback? Please share!!! I'd love to hear your stories.
Also, I really want to alert parents or yourselves if anyone has these symptoms I had please go to your doctor immediately! Pseudotumor Cerebri is very dangerous.
my brother suffered from a pseudotumor! it was rare for him to have with him being male and not overweight. i work for an eye doc and that is where he was diagnosed. he had terrible headaches, off balance, tired--huge list of things. the doc referred him to a neuro doc. he had a spinal tap (he had great side effects from that) and everything else was ruled out. the neuro put him on diamoxx (sp?). the cure was almost has bad as the pseudotumor. anyhow, he was on it for several months and kept complaining of the headaches. the neuro doc went has far as to suggest a shunt (which bro didn't want). he finally went to a neuro-opthamologist. after several tests, he found that the pseudotumor was gone!!! he has been "tumor" free for about 6 months now. he still suffers from terrible headaches (though not has often, we think they are migraines). he is being monitored about every 3 or 4 months. the docs don't really know why he got it. at the time bro was taking herbal stuff (human growth hormone--stuff like that) and i think that had something to do with it...anyhow, that is his story! do you mind me asking how your's was treated (med wise)? do you still get check ups? good luck with the met...it can reck havoc on your digestion system--lots of trips to the bathroom. with me, if i low carb it, i do good with...and if i watch my fat. if you have any questions or need to talk, just send me a message!
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I was treated with the same medicine as your brother. They gave me diamox, I don't remember the dose. I had frequent check ups after I left the hospital. I was diagnosed in January of 2005 and by June I stopped medication. But I still get headaches constantly.
Welcome to SC. I just wanted to say that I do not think that PTC and PCOS are related. Starting out with Met can give you bad side effects as your body adjusts to it. I felt okay after gradually increasing my dose over the course of a few weeks and then letting my body adjust for a few months. It was tough, but worth it.
I do have eye pain and headaches, but they are migraines with eye pain in one eye or sometimes both. I have not officially heard that migraines and PCOS are related, but I have a theory that all of the fluctuating hormones cause the migraines.
Are you headaches like migraines or do they remind you of when you were sick all those years ago?
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I have it and I do somehow think that it is related. I was told it was because of my weight but as I lost weight it seemed to get worse. I have forgone any treatment as of right now, I see my eye DR once a year to keep an eye on the pressure in my eyes. Until I have all the children I want I won't be aking the medicine they prescribe for it because it causes birth deffects.
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I know it has been awhile since you posted this, but my younger sister had this in high school. She was told at the time, that she could never take BCP because of the Estrogen level I believe. They said that is part of what caused it, but I will check with her on that.
She has never been Dx'd with PCOS however has many symptoms that I have had. She has 4 lovely children, and concieved every last one of them while doing Atkins, pretty much the same that I have done on my last 3 pregnancy's. She had her tubes tied, and is now again on Atkins and has lost over 40lbs. She also was born with kidney reflux. Her kidneys were barely connected to her bladder, and they found out when she was approx 10. She had surgery to correct it, and has one kidney that barely functions, and is small, and the other does most the work, but isn't at full capacity. She was told not to have kids, but alot of good that did. LOL.
I know I'm digging up an old thread, but wanted to say that 3 weeks ago I was diagnosed with Psuedotumor Cerebri by my neurologist (tests confirmed by the ophthalmologist). I was told by my neurologist that this disease/condition/whatever is common in women of child bearing age that have gynecological problems.
The strange part is for me, I haven't put on weight (which is also a cause of this condition). I do however have PCOS/Endo. This summer I was actually starting to loose weight when in August I started getting these horrendous headaches. After some eye tests and MRI's it took till 3 weeks ago to diagnose me with this problem.
This is definitely something to keep in the back of your mind if you have all these problems (PCOS/Endo/etc) and suddenly start getting headaches or start to have any vision problems. As Stacy mentioned above, this condition is quite dangerous. My doctor told me if left untreated it leads to blindness.
I was dx with Psuedotumor Cerebri (now called Intracranial Hypertension) in 1999, but it went into remission until I started noticing symptoms again this past October. I began having terrible headaches (wondering if they were just migraines), and so I made an appt. for my annual checkup with my eye dr. I saw him today, and he said that my optic nerve in my right eye is a little swollen--one of the symptoms of PTC. So he told me to go back to my neurologist, after not seeing him for several years. I have an appt. with him on Monday, so we'll have to see.
I now wonder if my recent 43 lb. weight loss is a contributing factor to the headaches. And I really feel that there has to be a connection between PCOS and PTC. There's also a relationship with sleep apnea and these disorders (according to my eye doctor), but that's another story.
Carrie
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Something to consider as this is all playing vicious games with me now. I have been on Diamox for the past 4 weeks now to treat the PTC. I also have PCOS. Something I'm just finding out now is that a side effect of Diamox is depression and as most of us know from experience, PCOS can also lead to depression. Three days ago I was diagnosed with Depression and in the past few days I've been more hysterical then what I've been in the past few weeks. I called my neurologist on Tuesday after my appt with the Psychotherapist mentioning the depression and he did not seem concerned at all. That now makes 3 side effects from this medicine that I am having, but no concern from the doc as he says it's better to keep on this than to use steriods to help the PTC.
I guess what I'm trying to say is, be careful ladies. I don't want to see anyone ending up in my depressed shoes.
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2010: Breast Reduction Surgery scheduled for January 2009: Laparoscopy (Endo Stage II) | Hysteroscopy (Fixed Septate Uterus) | Cervical & Thoracic Disc Degeneration with Foraminal Stenosis | Herniated Discs in C5-6, C6-7, T4-5, and T7-8 2008: Psuedotumor Cerebri | PCOS | Endometriosis | Depression | Anxiety 2003: L4-L5 Herniated Disc Affecting Right Leg Sciatica 1998: Herniated Disc in Neck (At the time I wasn't diagnosed with which one.)
I've just recently started getting headaches but can't figure out what's causing them. I thought it was my TMJ acting up because it seemed to radiate from my jaw up to my ears, down my neck, and up to my forehead. But, then sometimes it comes from the base of my neck. It also hurts behind my eyes.
What did your headaches feel like? I always feel like there's this pressure in my head around my neck/jaw/eye area.
What do you think? I haven't had the buzzing or weird sounds in my ears. The only time I usually have blurry vision is when I first wake up.
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zoerba: I would definitely make an appointment with an Ophthalmologist to do a full eye exam (including retina photography and all). You'll be killing two birds with one stone - ruling out eye problems causing your headaches and getting your yearly eye exam at once.
__________________ Liz To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts.
2010: Breast Reduction Surgery scheduled for January 2009: Laparoscopy (Endo Stage II) | Hysteroscopy (Fixed Septate Uterus) | Cervical & Thoracic Disc Degeneration with Foraminal Stenosis | Herniated Discs in C5-6, C6-7, T4-5, and T7-8 2008: Psuedotumor Cerebri | PCOS | Endometriosis | Depression | Anxiety 2003: L4-L5 Herniated Disc Affecting Right Leg Sciatica 1998: Herniated Disc in Neck (At the time I wasn't diagnosed with which one.)
When my lil Sis had it, she went undiagnosed with a horrible migraine, until suddenly her eyes started drifting different directions. She couldn't focus, since her eyes were pointing 2 different directions, which made my Mom demand a diagnosis. She was admitted into a childrens hospital and they had to do 2 spinal taps before getting a clear diagnosis. She hasn't had a recurrence, but she does have to stay away from certain meds especially those containing hormones. She does however suffer from migraines 1-2 times a month.
Has anyone had Pseudotumor Cerebri? 
