pseudotumor cerebri

[Stargurrl* 5]

Wondering if anyone is familiar with this. I was suffering from severe headaches, visual distortion, a weird sound in both my ears and feeling as tho my ears were clogged. I assumed it was a sinus infection and went to my doc they put me on antibiotics. Four or five days in I was getting worse and I just happened to have an appt to get new rx for glasses...thank God I did. The eye doc said I had edema in both my eyes and referred me to a specialist, she explained that my optic nerves were swollen and it could mean I had too much cerebral spinal Fluid, this was Tuesday, got an appt with specialist on Thursday morning. Well that night I just couldn't take I. Couldn't sleep felt like my head was going to explode. Called specialist as soon as they opened and they fit me in. The doc confirmed the edema and sent me directly to a neurologist, who sent me for a MRI and right then at the hospital and schedule me for a spinal tap first thing the next morning to relieve the pressure. Now I'm home and wondering....wth??? They say this pseudotumor cerebri is most common in overweight women who are in child bearing age....great. any experiences would be greatly appreciated.

[eko 1]

Jersey, I have been dealing with PTC since 2005. One of my motivators for the lapband and losing weight was to get off or reduce the amount of medication I am taking to manage my PTC. They claim that weight loss will help the PTC and even possibly put it into remission. My great diagnosis came when I went to see my Opthmalogist because of floaters in my eye and he found that my optical nerves had hemorrhaged - scared the crap out of me. I was unable to loss the weight on my own, and one of my meds is at the highest dose possible and can come with some nasty side effect, fortunately I have been able to tolerate it well. I feel the weight loss so far has helped me, they say 10% weight loss should show improvement. Now I just have to get my specialist to agree with me.

Every case of PTC is different and there is a lot of information on the internet. If you have any other questions, let me know.

~eko

[Stargurrl* 5]

Eko thanks so much for the reply. I never heard of this before I was diagnosed. Did you have to have a spinal tap? I was also given a rx to take to control the Fluid (diamox)

[eko 1]

I had one spinal tap (or lumbar puncture as they like to call them) when I was first diagnosed. Two days later I was in the ER with the worst headache I had ever had! I am currently on Diamox and was on Topamox for the headaches (just recently finished weaning off of it). If you are on Diamox Extended Release (capsules) you can open those to take them if you find they are to big for you. BTW, Vitamin B-1 helps with some of the side-effects of the Diamox if you have any problems. Best wishes ~eko

[eko 1]

Jersey- was wondering how you were feeling these days with the PTC? Thought I'd check in with you.

[onenuttynurse 0]

Wondering if anyone is familiar with this. I was suffering from severe headaches, visual distortion, a weird sound in both my ears and feeling as tho my ears were clogged. I assumed it was a sinus infection and went to my doc they put me on antibiotics. Four or five days in I was getting worse and I just happened to have an appt to get new rx for glasses...thank God I did. The eye doc said I had edema in both my eyes and referred me to a specialist, she explained that my optic nerves were swollen and it could mean I had too much cerebral spinal Fluid, this was Tuesday, got an appt with specialist on Thursday morning. Well that night I just couldn't take I. Couldn't sleep felt like my head was going to explode. Called specialist as soon as they opened and they fit me in. The doc confirmed the edema and sent me directly to a neurologist, who sent me for a MRI and right then at the hospital and schedule me for a spinal tap first thing the next morning to relieve the pressure. Now I'm home and wondering....wth??? They say this pseudotumor cerebri is most common in overweight women who are in child bearing age....great. any experiences would be greatly appreciated.

I am very familiar with this as I have delt with this since 1995 with very good luck until 1 month ago when i had another flare up...onenuttynurse

[Stargurrl* 5]

I did the worst thing I could do.....I googled it and surely I was reading about the most severe cases they sounded horrible. I'm finally going back to work today and still waiting on the neurologist to call me with results from the spinal Fluid they took....ill keep you guys posted.

Jamie

[collins33 2]

Well JerseyGirl I've had this since 1997. I went thru so many test and specialist before they could figure out what was wrong with me. I had it so bad that 1 spinal tap didn't work. Within less than 2 months I had to have 8 spinal taps. At that time I was a Jr in High school and I missed about half the year luckily for me I was ahead in my class and they let me pass to 12th grade. I was put on meds for a year and a diet and it was under control. After about a year, I wasn't getting my headaches anymore and my eye sight was good. Then it flared back up in 2009 but this time when they did the MRI they found out that I had a brain tumor. So in April 2009 I had brain surgery. This was the scariest time of my life considering I'm a single parent of 2. Everything went well with the surgery and luckily it wasn't cancer. Everything was going okay until Jan 2010 I was having those terrible headaches (the ones that feels like you wish you could take your head off so you don't have to bear the pain) then on Valentines Day I went in for a spinal tap. I did know losing weight will help the situation but everytime I went on a diet I would lose then gain so that's when I finally decided to get banded. I was banded on Dec 29th and I couldn't be more happier. I do still get some headaches but not that severe like before. I did the same thing you've done, I also got info from the internet and thought of the worst. Honestly after everything I've been thru I could say that I was scared for nothing. I don't know if you pray or not but I had to look at this way: God wouldn't put us thru anything we couldn't handle!

[Stargurrl* 5]

I couldn't agree more. Yesterday I woke up again with "the headache" really depressed and said to myself, how many people didn't even get a chance to wake up today and I need to be thankful I'm here. I do pray and believe it helps me a lot. Thank you so much for the post I appreciate all the support : )

[eko 1]

I researched the internet too and read all the scary stories when I was first diagnosed. With meds, the headaches and everything can be controlled. I am sincerely hoping the weightloss puts my PTC in remission because I want off of the meds. I believe that day will come, I have the faith.

[kab1278 3]

Wow! This sounds a lot like Intracranial Hypertension. My friend developed it after having Meningitis. She has too much spinal Fluid in her head which causes extreme headaches, vision problems and more. She has had too many spinal taps to count and will probably soon be having a Continuous Spinal Tap where she is tapped for 24 hours straight. The results from that test will tell the neurologists and neurosurgeons if she will have to have a shunt placed from her head to her stomach, allowing excess Fluid to drain into her digestive system.

I wonder what the difference is between the two Dxs.

Well, in any instance, I hope health for everyone!!!

Kelley

[peacequeen 434]

Kab, I just read the 2 are the same.

I am so glad I found this post. So much is making sense to me now. I have Myasthenia Gravis and had a crisis in 09. I had to have IVIG treatment but my body rejected and I developed aseptic meningitis. Every symptom I've read about due to PTC/IH, I have experienced and have been wondering what is wrong with me. It may not be the issue but it makes alot of sense. Guess I'll give my neuro a call tomorrow. Thanks everyone. I pray good health for all of you!

[onenuttynurse 0]

PTC is basically intracranial hypertension and has the same symptoms.The difference is the severer compression of the optic nerve which is what happened to me. I have optic shunts which i chose after having weekly taps........If PTC is left untreated, it can actually case a midline shift of your brain...its all bad from that point on...........then you are fighting for you life....Good luck...It is extremly important to control the symptoms...onenuttynusre

[kab1278 3]

Wondering if anyone is familiar with this. I was suffering from severe headaches, visual distortion, a weird sound in both my ears and feeling as tho my ears were clogged. I assumed it was a sinus infection and went to my doc they put me on antibiotics. Four or five days in I was getting worse and I just happened to have an appt to get new rx for glasses...thank God I did. The eye doc said I had edema in both my eyes and referred me to a specialist, she explained that my optic nerves were swollen and it could mean I had too much cerebral spinal Fluid, this was Tuesday, got an appt with specialist on Thursday morning. Well that night I just couldn't take I. Couldn't sleep felt like my head was going to explode. Called specialist as soon as they opened and they fit me in. The doc confirmed the edema and sent me directly to a neurologist, who sent me for a MRI and right then at the hospital and schedule me for a spinal tap first thing the next morning to relieve the pressure. Now I'm home and wondering....wth??? They say this pseudotumor cerebri is most common in overweight women who are in child bearing age....great. any experiences would be greatly appreciated.

Hi Jerseygirl581 and everyone else!!!

I talked to my friend today and found out, as has been pointed out since my post last night, that Intracranial Hypertension and pseudotumor cerebri are one and the same. And being that it is still considered a "Rare Disorder", I can't believe how many people are coming out to say they suffer from it. Wow!

My friend is taking Topomax and Diamox...and maybe something else I am forgetting. Her pressure is greatly affected by the weather and stress. Her vision is really only affected by flashes of light in her peripheral. Her meds don't seem to be working as well as hoped, so she may have to move on to other treatments as I explained last night. But I told her about you and asked if she could recommend any good websites for information. She really likes http://www.ihrfoundation.org/. They have a lot of great information. Also, she asked me to tell you about the IH registry. It is a registry of people suffering from IH, which is used for research purposes and the more people registered, the more grant money organizations can get for IH research. One of the goals is to get enough people registered to get IH to not be considered rare because obviously (and unfortunately) no one wants to study anything that doesn't affect tons of people. To learn more about the registry, you can sign up at http://www.ihrfoundation.org/intracranial/hypertension/info/C36. There are also a couple of good Facebook groups to join.

And finding a doctor who knows a lot about IH seems to be a difficulty in the IH world. But there are doctors at the Cleveland Clinic who specialize in it! The doctor she is seeing isn't on the CC website but if you call, they make appts. with him. His name is Stuart Tupper (I believe), and he is the only neurologist they have who specializes in IH. They also have an neuro-ophthalmology surgeon. His name is Gregory Kosmorsky, D.O.

Well, I hoped I helped! If you have any questions, I'll patch you through to my friend. She has done a ton of research and loves helping people.

Good luck everyone and here is to a low-pressure day!!!

Kelley

[Stargurrl* 5]

Thanks so much Kelley and everyone for all the info. The past two days I've been feeling pretty good. I take Diamox, can't can't topamax b/c of my kidney stone history, but it seems to be helping along w/ the spinal tap. I'm going to register now in the IH website! Thanks again!

Jamie