Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
Hi everyone,
I have been lurking around for a while now, and thought it was time to finally join up and introduce myself.
I was diagnosed with IIH about 5 weeks ago after a whirlwind of tests and panic. Ok, the panic was mostly on my part.
In Sept. I went in for my regular vision exam, and didn't do well on my visual fields and had some really minor swelling of optical nerves. (that's what the ophthalmologist called it at the time.) he had me come in for repeat tests in Feb, and both the swelling and visual fields had gotten worse.
He referred me to a glaucoma specialist to have more comprhensive eye testing done. She saw PAPS and visual fields that had several blind spots. She suggested that I see a neurologist to rule out tumors.
In the next 48 hours I was scheduled for an MRI and an MRA. I was terrified that they would find a tumor.
Thankfully the MRI and MRA came back mostly clear. I say mostly because they did find a partially empty sella turcica. (I'll be following up with my endocrinologist to talk about that late May.)
I saw an NO the next week and got diagnosed with PAPS and visual field loss. They though that I probably though I had IIH so I was scheduled for an LP. I had a floroscopy guided lp with an opening pressure of 29. I'm not sure what the closing pressure was though.
The strangest thing happened in recovery from the LP. I noticed that my head felt different, it didn't hurt. I had been having low grade headaches so much of the time I barely noticed them until it was gone.
Since then I have had daily headaches, and for the past 4 days I've been dealing with a doozy!
I chose to enter a study through my NO's office, and though I'm not supposed to know if I'm on the study drug (diamox) or placebo, I'm pretty sure which I got. Unless they can make a placebo that has all the side effects of the real meds, I am on the Diamox. I'm up to 1500mg/day. Because the headaches and visual fields aren't improving they want to raise the meds to see if that helps. (though I refused until after I get back from vacation, I'm not dealing with added side effects while in Vegas!)
So that's where I'm at so far.
Thanks to anyone who made it this far. I look forward to meeting all of you. I'll be as active as my life with IIH, a crazy active, special needs 5 year old boy and a husband will allow me to be. ;-p
Beth
I have been lurking around for a while now, and thought it was time to finally join up and introduce myself.
I was diagnosed with IIH about 5 weeks ago after a whirlwind of tests and panic. Ok, the panic was mostly on my part.
In Sept. I went in for my regular vision exam, and didn't do well on my visual fields and had some really minor swelling of optical nerves. (that's what the ophthalmologist called it at the time.) he had me come in for repeat tests in Feb, and both the swelling and visual fields had gotten worse.
He referred me to a glaucoma specialist to have more comprhensive eye testing done. She saw PAPS and visual fields that had several blind spots. She suggested that I see a neurologist to rule out tumors.
In the next 48 hours I was scheduled for an MRI and an MRA. I was terrified that they would find a tumor.
Thankfully the MRI and MRA came back mostly clear. I say mostly because they did find a partially empty sella turcica. (I'll be following up with my endocrinologist to talk about that late May.)
I saw an NO the next week and got diagnosed with PAPS and visual field loss. They though that I probably though I had IIH so I was scheduled for an LP. I had a floroscopy guided lp with an opening pressure of 29. I'm not sure what the closing pressure was though.
The strangest thing happened in recovery from the LP. I noticed that my head felt different, it didn't hurt. I had been having low grade headaches so much of the time I barely noticed them until it was gone.
Since then I have had daily headaches, and for the past 4 days I've been dealing with a doozy!
I chose to enter a study through my NO's office, and though I'm not supposed to know if I'm on the study drug (diamox) or placebo, I'm pretty sure which I got. Unless they can make a placebo that has all the side effects of the real meds, I am on the Diamox. I'm up to 1500mg/day. Because the headaches and visual fields aren't improving they want to raise the meds to see if that helps. (though I refused until after I get back from vacation, I'm not dealing with added side effects while in Vegas!)
So that's where I'm at so far.
Thanks to anyone who made it this far. I look forward to meeting all of you. I'll be as active as my life with IIH, a crazy active, special needs 5 year old boy and a husband will allow me to be. ;-p
Beth
It sounds like you are on top of things! It can get a little crazy.
Some of the people here, after hearing my story helped me to realize that I have an extremely high tolerance for pain (which you may or may not-- I'm mentioning this because you said you had low grade headaches for a long time) so it's extremely important for IIH'ers to listen to their bodies and respond with biofeedback once they figure out what's going on.
I've found it extremely helpful.
Nice to meet you Beth!
~ Bex
Erin-- you're right, I have a high pain tolerance. I was so surprised when after the LP, I suddenly realized I did indeed have a headache. I didn't even realize it.
Bex-- good luck on your journey, we can totally sit next to each other! :)
I am sorry you have IH, but happy to hear you have found DS.
If you have, questions or concerns we are all here to help in any way we can.
Since you are fairly new to this condition, it may all seem overwhelming right now. I found that it helped to research anything I could about IH so that I made sure my doctors were doing everything they could and I was doing everything I could. It also helped so that if they tried to pin me in a corner I could tell me doctors otherwise. We have to be our own advocates!
While some are lucky enough to go into remission, it can be a challenge getting there. The first thing that you need to keep in your mind is "what is causing my IH?" and set to it to find the reason. Often times when you find what causes it, it helps to treat the IH effectively. When you don't know what is causing it, it's kinda like stabbing in the dark. You may hit something, but most likely will come up with nothing.
The diamox can be very brutal and with time the side effects should subside. It can take some people longer than others to have them subside. Their are also meds that can be tried for IH, so don't feel discouraged if you find diamox is not enough or isn't the right med for you.
I know this is a little early to mention but shunt surgeries, although are often very effective, should be saved as a last resort. It is worth trying every drug possible before jumping in to surgery. Shunts can be quite temperamental and have to be replaced many times in your life if you go that route. I will say that I had an LP (lumbar peritoneal) shunt and now have a vp shunt (ventricle peritoneal) shunt. If you ever want to know more about them later on or have any other questions about IH, feel free to message me or add another post and I will try to answer with the best of my ability.
Again, welcome and glad to have you :)
Mallory
P.s I am happy that you are lucky enough to have a high pain threshold, I unfortunately do not, lol. It sounds like you have been though the mill though, but we are here for you and we understand.
You will get used to me having weird sentence and misspelling (sorry!)
I bet we are in the same study - NORDIC ? I'm 6 months into it and they took my diamox (I think I've got that drug too because of the side effects) up to 2,750mg before I was so sick that I cried "uncle!" and they lowered it down. I think it's a good study, but you'll want to be very careful with your electrolytes and acidosis symptoms - I couldn't get out of bed and had heart palpitations at the highest dose.
Because you are in the study, it will limit treatment options unless you get really bad symptoms. Don't be shy in contacting the office if your symptoms get worse, they will pull you out of the study and take care of you.
Welcome, and I hope that things get better for you so you can have more energy for your 5 year old!
welcome to the group! i hope you're feeling better - no headaches on vacation. i am a pediatric OT and i noticed you have a sensational child! i love that description!
Amy
Misty
@1green thank you for all the information! Don't worry, shunt surgery is on my very last option list! I'm finally adjusting to the meds, just takes a while after an increase. Other than being over weight, there is no known cause of my IH, so I'm also working on losing weight. Thankfully the meds are helping there!
@frstsite yes, it's the NORDIC study. So far they have taken really good care of me, thought the weight loss "coach" seems pretty useless. But that's an entire rant on its own! After I get back from vacation they will be upping my dose to 1750mg, hoping it helps the headaches which are only getting worse.
@Amy thanks! He really is a sensational kid, so it fits in more ways than one. :) he is a super seeker, and can be exhausting, but he is learning to meet some of his own sensory needs, so that is so refreshing!
@Misty so glad you're feeling good after your LP, I know I felt good for 48 hours after mine. Then the dumb headaches came back. Hope you get relief for longer. :)