Does anyone else have Pseudotumor cerebri?

[Hiraeth 515]

I was diagnosed when I was 20, but I'm sure I've had it since I was 17. When I started high school at age 14, I weighed 115 pounds. As the years went on, I teetered in my weight between 120 and 145. But once I got into my Senior year at age 17, I was put on oral steroids for sinus issues, and I gained 50 pounds in 3 months. After that, I couldn't get my weight off. I noticed I started getting very fatigued and started having horrible Migraines. I always assumed the migraines were from sinus trouble. But then at age 20, I start noticing that I had dark spots in my vision. It wasn't like floaters, but more like blind spots; kinda like when you look at the sun for too long, and you see those dark spots that kinda flicker. It's kinda hard to explain, lol. I also noticed that I could no longer ride roller coasters or spinning rides without getting horrible migraines. I was always able ride crazy rides before I put on weight. But now, they make me sick. So, I decided to go to an Optometrist to get my eyes checked. The doctor told me that my optic nerves were swollen, and she referred me to a Nuero-Opthamologist to be tested further. He ordered an MRI and a spinal tap, which ruled out a brain tumor and MS (thank goodness). But the spinal tap confirmed Pseudotumor cerebri. Pseudotumor cerebri is a false brain tumor. It is not malignant or cancerous. It's when excess cerebrospinal Fluid builds up within the skull. There is no cure, and it is more common in overweight women. My doctor said I had some of the most interesting eyes because, even though I have blind spots and very swollen optic nerves, my vision is 20/15. He said that most people, with swollen optic nerves like mine, are legally blind.

Symptoms for Pseudotumor cerebri are:

- Migraines
- Vision problems (double vision, dimmed vision, seeing light flashes, blind spots, etc.)
- Tinnitus
- Nausea and vomiting brought on by migraines
- Fatigue

- Dizziness

The danger of having Pseudotumor cerebri is permanent blindness.

Ever since I had my surgery and have lost a large amount of weight, I have only had one headache (which was probably due to not eating enough). I haven't had anymore visual obscurations or episodes of blindness. I'm so excited about this. I think my condition is going into remission. Does anyone else have Pseudotumor cerebri?

[ladygg1967 171]

I have it too! It was found by my opthomalogist during a routine exam a few years back. Funny thing is, I had the Migraines for a bit before the diagnosis, but no one was sure what caused them. When the optho discovered the PTC, a discussion about my weight ensued.....Because of the tendency for this condition to be exacerbated by weight gain, I've tried to keep the weight to a minimum. As I get older, it's becoming harder to do.....thus I am now going thru the final stages before getting a surgery date for the SLEEVE. Good luck to you! What part of the country are you in?

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[ladygg1967 171]

BTW....I went from just wearing readers when I had a Migraine to full on bifocals (vanity dictates progressive lenses-I refuse to wear glasses with that ugly line, + I think it'll make migraines/headaches worse)

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[ShondaDaDiva 15]

I was diagnosed when I was 20, but I'm sure I've had it since I was 17. When I started high school at age 14, I weighed 115 pounds. As the years went on, I teetered in my weight between 120 and 145. But once I got into my Senior year at age 17, I was put on oral steroids for sinus issues, and I gained 50 pounds in 3 months. After that, I couldn't get my weight off. I noticed I started getting very fatigued and started having horrible Migraines. I always assumed the migraines were from sinus trouble. But then at age 20, I start noticing that I had dark spots in my vision. It wasn't like floaters, but more like blind spots; kinda like when you look at the sun for too long, and you see those dark spots that kinda flicker. It's kinda hard to explain, lol. I also noticed that I could no longer ride roller coasters or spinning rides without getting horrible migraines. I was always able ride crazy rides before I put on weight. But now, they make me sick. So, I decided to go to an Optometrist to get my eyes checked. The doctor told me that my optic nerves were swollen, and she referred me to a Nuero-Opthamologist to be tested further. He ordered an MRI and a spinal tap, which ruled out a brain tumor and MS (thank goodness). But the spinal tap confirmed Pseudotumor cerebri. Pseudotumor cerebri is a false brain tumor. It is not malignant or cancerous. It's when excess cerebrospinal Fluid builds up within the skull. There is no cure, and it is more common in overweight women. My doctor said I had some of the most interesting eyes because, even though I have blind spots and very swollen optic nerves, my vision is 20/15. He said that most people, with swollen optic nerves like mine, are legally blind.

Symptoms for Pseudotumor cerebri are:

- Migraines

- Vision problems (double vision, dimmed vision, seeing light flashes, blind spots, etc.)

- Tinnitus

- Nausea and vomiting brought on by migraines

- Fatigue

- Dizziness

The danger of having Pseudotumor cerebri is permanent blindness.

Ever since I had my surgery and have lost a large amount of weight, I have only had one headache (which was probably due to not eating enough). I haven't had anymore visual obscurations or episodes of blindness. I'm so excited about this. I think my condition is going into remission. Does anyone else have Pseudotumor cerebri?

I had never heard of this till 2 weeks ago! By chance my glasses were broken at work so needed to replace them. My prescription was expired so a routine eyes exam ended in emergency lab work and a mri. My dad had just passed away from brain cancer a few weeks earlier so I immediately assumed I was next and had a meltdown in the doctor's office. My primary dr took the time to explain what was happening (my optometrist was vague even after my breakdown in her office) turns out I have a slightly swollen optic nerve. They feel since my surgery was a few weeks away there was no need to worry now. No one else I asked had heard of this! Thanks for sharing your story.

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[SlimBra 151]

I had this as well.....diagnosed in 2004. did not want to take the meds.

went back last year...said it was gone!

I just had surgery a month ago so it did not go away bcz of surgery. Those pains behind my eyes were no joke!!

hope surgery will help with yours

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[James Marusek 5,244]

I haven't heard of this condition but I had severe Migraine headaches. I would begin to see sparkling stars around the peripheral and clear tunnel vision in the center. Then my vision went to blurs which was quickly followed by severe headaches. Generally this occurred several times per year. It was a few hours until I returned back to normal after each episode. I finally realized that the trigger to my Migraines were caused by fluorescent lights. So whenever I felt an attack coming on, I tried to relocate to an area of natural lighting and that helped. For the last 8 years since my retirement, I no longer encounter fluorescent lightning and I no longer have migraines.

[Hiraeth 515]

I have it too! It was found by my opthomalogist during a routine exam a few years back. Funny thing is, I had the Migraines for a bit before the diagnosis, but no one was sure what caused them. When the optho discovered the PTC, a discussion about my weight ensued.....Because of the tendency for this condition to be exacerbated by weight gain, I've tried to keep the weight to a minimum. As I get older, it's becoming harder to do.....thus I am now going thru the final stages before getting a surgery date for the SLEEVE. Good luck to you! What part of the country are you in?

Sent from my SM-G935P using the BariatricPal App

Same here. I had the migraines for at least 3 years before I was diagnosed. My mom kept telling me it was just sinus pressure. But my gosh, the migraines were awful. A lot of women on the PTC/IIH Facebook group get so upset when their doctors advise them to lose weight. They feel like they're being attacked and belittled. But I've noticed that 90% of the people on that page are overweight. So, it's obvious that being overweight is a leading factor. Thanks so much! I am feeling so much better. Good luck to you, as well! I live in Alabama.

Do you ever have leaky ears? My ears always get so wet with clear liquid.

[Hiraeth 515]

I was diagnosed when I was 20, but I'm sure I've had it since I was 17. When I started high school at age 14, I weighed 115 pounds. As the years went on, I teetered in my weight between 120 and 145. But once I got into my Senior year at age 17, I was put on oral steroids for sinus issues, and I gained 50 pounds in 3 months. After that, I couldn't get my weight off. I noticed I started getting very fatigued and started having horrible Migraines. I always assumed the migraines were from sinus trouble. But then at age 20, I start noticing that I had dark spots in my vision. It wasn't like floaters, but more like blind spots; kinda like when you look at the sun for too long, and you see those dark spots that kinda flicker. It's kinda hard to explain, lol. I also noticed that I could no longer ride roller coasters or spinning rides without getting horrible migraines. I was always able ride crazy rides before I put on weight. But now, they make me sick. So, I decided to go to an Optometrist to get my eyes checked. The doctor told me that my optic nerves were swollen, and she referred me to a Nuero-Opthamologist to be tested further. He ordered an MRI and a spinal tap, which ruled out a brain tumor and MS (thank goodness). But the spinal tap confirmed Pseudotumor cerebri. Pseudotumor cerebri is a false brain tumor. It is not malignant or cancerous. It's when excess cerebrospinal Fluid builds up within the skull. There is no cure, and it is more common in overweight women. My doctor said I had some of the most interesting eyes because, even though I have blind spots and very swollen optic nerves, my vision is 20/15. He said that most people, with swollen optic nerves like mine, are legally blind.

Symptoms for Pseudotumor cerebri are:

- Migraines

- Vision problems (double vision, dimmed vision, seeing light flashes, blind spots, etc.)

- Tinnitus

- Nausea and vomiting brought on by migraines

- Fatigue

- Dizziness

The danger of having Pseudotumor cerebri is permanent blindness.

Ever since I had my surgery and have lost a large amount of weight, I have only had one headache (which was probably due to not eating enough). I haven't had anymore visual obscurations or episodes of blindness. I'm so excited about this. I think my condition is going into remission. Does anyone else have Pseudotumor cerebri?

I had never heard of this till 2 weeks ago! By chance my glasses were broken at work so needed to replace them. My prescription was expired so a routine eyes exam ended in emergency lab work and a mri. My dad had just passed away from brain cancer a few weeks earlier so I immediately assumed I was next and had a meltdown in the doctor's office. My primary dr took the time to explain what was happening (my optometrist was vague even after my breakdown in her office) turns out I have a slightly swollen optic nerve. They feel since my surgery was a few weeks away there was no need to worry now. No one else I asked had heard of this! Thanks for sharing your story.

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Oh gosh, I am so sorry about your father. I'm glad they didn't find a brain tumor with you. I'm almost certain this surgery will help you. My optic nerves were VERY swollen, and I'm already doing better.

[Hiraeth 515]

I had this as well.....diagnosed in 2004. did not want to take the meds.

went back last year...said it was gone!

I just had surgery a month ago so it did not go away bcz of surgery. Those pains behind my eyes were no joke!!

hope surgery will help with yours

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Congrats on no longer having it! And yes, omg... The pain is horrible. I would get so sick and vomit several times. I can't believe I'm saying this, but, vomiting actually helped the pain fade a bit. It's like it was releasing pain endorphins. The surgery has already helped a lot. Thanks so much!

[Hiraeth 515]

I haven't heard of this condition but I had severe Migraine headaches. I would begin to see sparkling stars around the peripheral and clear tunnel vision in the center. Then my vision went to blurs which was quickly followed by severe headaches. Generally this occurred several times per year. It was a few hours until I returned back to normal after each episode. I finally realized that the trigger to my Migraines were caused by fluorescent lights. So whenever I felt an attack coming on, I tried to relocate to an area of natural lighting and that helped. For the last 8 years since my retirement, I no longer encounter fluorescent lightning and I no longer have migraines.

This sounds a lot like PTC. Sometimes light can trigger it. I remember a few years back, I would walk outside at dawn (while the sky had a very light glow), and even then my eyes would hurt. It's like the dullest light would make my eyes and head ache. I'm glad you're feeling better.

[LaTonya79 2]

Yes I do

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[ladygg1967 171]

I have it too! It was found by my opthomalogist during a routine exam a few years back. Funny thing is, I had the Migraines for a bit before the diagnosis, but no one was sure what caused them. When the optho discovered the PTC, a discussion about my weight ensued.....Because of the tendency for this condition to be exacerbated by weight gain, I've tried to keep the weight to a minimum. As I get older, it's becoming harder to do.....thus I am now going thru the final stages before getting a surgery date for the SLEEVE. Good luck to you! What part of the country are you in?

Sent from my SM-G935P using the BariatricPal App

Same here. I had the migraines for at least 3 years before I was diagnosed. My mom kept telling me it was just sinus pressure. But my gosh, the migraines were awful. A lot of women on the PTC/IIH Facebook group get so upset when their doctors advise them to lose weight. They feel like they're being attacked and belittled. But I've noticed that 90% of the people on that page are overweight. So, it's obvious that being overweight is a leading factor. Thanks so much! I am feeling so much better. Good luck to you, as well! I live in Alabama.

Do you ever have leaky ears? My ears always get so wet with clear liquid.

I'm in Philadelphia, PA. Hoping for a surgery date by the end of January 2017.....going on a 7day cruise the last week of April 2017

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[Hiraeth 515]

I have it too! It was found by my opthomalogist during a routine exam a few years back. Funny thing is, I had the Migraines for a bit before the diagnosis, but no one was sure what caused them. When the optho discovered the PTC, a discussion about my weight ensued.....Because of the tendency for this condition to be exacerbated by weight gain, I've tried to keep the weight to a minimum. As I get older, it's becoming harder to do.....thus I am now going thru the final stages before getting a surgery date for the SLEEVE. Good luck to you! What part of the country are you in?

Sent from my SM-G935P using the BariatricPal App

Same here. I had the migraines for at least 3 years before I was diagnosed. My mom kept telling me it was just sinus pressure. But my gosh, the migraines were awful. A lot of women on the PTC/IIH Facebook group get so upset when their doctors advise them to lose weight. They feel like they're being attacked and belittled. But I've noticed that 90% of the people on that page are overweight. So, it's obvious that being overweight is a leading factor. Thanks so much! I am feeling so much better. Good luck to you, as well! I live in Alabama.

Do you ever have leaky ears? My ears always get so wet with clear liquid.< /p>

I'm in Philadelphia, PA. Hoping for a surgery date by the end of January 2017.....going on a 7day cruise the last week of April 2017

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Is this your last month of doctor visits? If so, you may have a good chance of getting a date by then. Good luck!

[ladygg1967 171]

Pretty much.....appointment with my surgeon 1/6/17......hopefully will get a date very soon after that.

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