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've just been diagnosed with PTC.
This wasn't a big surpise to me.
I had the abnomal spinal tap last summer
and the neuros missed it b/c I didn't fit
inside their "box" for PTC.
I'm not obese and didn't have papillidema.
I did have visual haziness that came and went,
double vision, migraines to beat the band,
speech issues, and balance/gait problems as well
as clumsiness. They worked me up for MS, MG,
etc.. They ignored my high opening pressure,
high CSF synthesis rate, etc.
Three docs overlooked it. Finally,
an opthoneurologist did an angiogram/venogram,
ran a thrombosis profile, looked at the spinal tap numbers,
and sent me for vision field testing. I was diagnosed on Wednesday.
After a year and a half of progressing symptoms, I finally have
some treatment. He put me on Diamox and some potassium.
I don't know what lies ahead. How long will it take to
see improvement? When will I walk steady and not have
tipping spells? Will I quit stuttering intermittently?
Will it be safe to carry breakable things again?
I don't know. I am thankful for a on the ball doctor
and for this treatment. I've been very tired
on the Diamox, but hope it will improve over time.
I'm grateful for all the great information I've already gleaned just
from reading here on this forum.
Thanks for sharing your experiences to candidly.
CarlyM
I've just been diagnosed with PTC.
This wasn't a big surpise to me.
I had the abnomal spinal tap last summer
and the neuros missed it b/c I didn't fit
inside their "box" for PTC.
I'm not obese and didn't have papillidema.
I did have visual haziness that came and went,
double vision, migraines to beat the band,
speech issues, and balance/gait problems as well
as clumsiness. They worked me up for MS, MG,
etc.. They ignored my high opening pressure,
high CSF synthesis rate, etc.
Three docs overlooked it. Finally,
an opthoneurologist did an angiogram/venogram,
ran a thrombosis profile, looked at the spinal tap numbers,
and sent me for vision field testing. I was diagnosed on Wednesday.
After a year and a half of progressing symptoms, I finally have
some treatment. He put me on Diamox and some potassium.
I don't know what lies ahead. How long will it take to
see improvement? When will I walk steady and not have
tipping spells? Will I quit stuttering intermittently?
Will it be safe to carry breakable things again?
I don't know. I am thankful for a on the ball doctor
and for this treatment. I've been very tired
on the Diamox, but hope it will improve over time.
I'm grateful for all the great information I've already gleaned just
from reading here on this forum.
Thanks for sharing your experiences to candidly.
CarlyM
The thing with IH is that it is an ugly disease, no masking that. Some of your symptoms mentioned above may get better with time, but that depends on how well the Diamox works for you. Some people do fine with medication alone, some have to go to surgical methods to bring the pressure down, such as a shunt. The Diamox did not work for me and I now have a VP shunt for right at a month now. I still experience some of the symptoms you described above and more but lost a lot of symptoms just with the shunt placement. They are still trying to figure out the best setting for me and I do get a little better with my walking, clumsiness, ha's (headaches), speach.
The sad thing is that there is no "easy-fix" to this. You just have to take your time, try to relax as much as possible, and not let this get to you too much. Try to prepare yourself and those around you that things are going to take a while for you to be close to normal again and gain as much support from them as possible. There will be days when you feel ok and there will be days you feel you can't function. That is the disease, not you. We are all here so if you need advise, have a question, or just need to vent, please do.
The biggest thing any of us can do at this point is to register with the IHRF. They need people like us to register, they get all of your background information on the disease, and will request medical records. They currently have 1730 people enrolled but need 2000 to get grants and funding so that they can even work to find a cure. IH is considered a "rare disease" and no one has really started paying attention to it until recently, so you will find doctors that know nothing of it or how to treat you. Make sure you are getting the best care possible, which right now seems like you are doing good with your neuro/opthamologist.
Sorry to hear that you have joined us in this IIH journey but welcome to your new IIH family!
We take very good care of our own here. You will always have support and hopefully, some answers.
You ask if some of your symptoms will improve, well that's the hope but Diamox may cause a few I'm afraid.
I find I am very clumsy because if the tingling in my hands and feet.
It has not helped my balance problems, but did get rid of the damm ringing!
At the moment, I am just happy to have some of my symptoms gone.
Like you, I have huge speech problems, up to the point were I cant remember how to speak! It was very scary the first few times it happened, now I see it as a warning sign to get some rest.Oddly, when its bad, I drink something with a hit of caffeine, coke, coffee, and it does seem to help. Cant explain why tho.
Diamox will make you so tired for the first few weeks, about 6-8 weeks but does get much better. Hang in there, it will get better.
You must be very careful with your diet and keep an eye on your potassium levels. Angela, is the Queen Bee, here on how to do it best and naturally. I'm sure she will drop by soon.
Keep reading older posts as they are full of good info.And, of course, ask us anything. We always try to answer as best we can.
Hoping you find your place here with us and you feel a bit better soon. Cath
As for the tipping spells, the stumbling ... I'm still going strong with mine. My big tell is I start moving to the right or easily trip over things and I'm 2 months into this. I haven't really stuttered much, but I have sounded like Yoda from time to time. The worse my headache is the more trouble I have with EVERYTHING. I notice it a lot more when I'm typing because I will leave out more words than usual or words that don't even belong there, but look or spelled kinda close to the word I want. It's annoying as heck! And I have more brain farts than I used to and I will stop talking in the middle of saying something because I've completely forgotten what I was going to say. My attention span is nil. If I'm distracted even slightly I will forget what I've just said. My mother has said I act as though I am really early early alzheimers. And the sad thing is I just forgot that word and I struggled to find it.
As for the breakable things ... stuff still slides from my hands, luckily more often than not I'm over carpet. I'm still really sensitive to light and the diamox has made me completely exhausted. If I need to get things done I try to do it before I take my first dose in the morning. And it's during this time I try to get food in my stomach before my appetite is gone. I think I may start drinking slimfast so I'm getting the vitamins I need with my reduced appetite.
Since I'm new to this myself ... I'm probably not the one with all the answers, but ... all I can offer is you get "used to it" a bit more and then the weirdness in the beginning becomes the norm and when things get bad you know you're having a worse day. I have about 2-3 bad days a week.
Jennifer
I was so sick for so long and thought that woudl be it, but I can honestly say that I have had two entire days that were wonderful this week. Hang in there, take really good care of yourself and surround yourself with the best doctors you can find!
A few things I wish I knew at the beginning of all of this- I learned from the best (Cath!)
1. get a pain management dr asap
2. get a copy of all of your records, scans, ect and take them with you to all appointments
3. rest as much as you can and get a wedge pillow for your bed if you can't lay flat, sleep is so important!
Good luck!
I'm sorry to hear you weren't diagnosed sooner, it's really tough having something that doctors don't really know anything about. I'm pretty sure the people here know more about IIH, than any doctor I've spoken to.
Everyone has even excellent answers to your questions, so I won't repeat. :)
But I will tell you a little about how my experiences with IIH.
I was diagnosed 3 weeks after having symptoms and was put on 1000mg of Diamox, my vision cleared up, but I continued having horrendous headaches, dizziness and gained a collection of other symptoms from the Diamox. This continued for over a year, until I complained and they doubled my dose to 2000mg. I now have been taken off Diamox completely, because in the last 7weeks my symptoms have become exactly the same as a brain tumour (minus full blown seizures and vomiting) and I had to leave work. So they are rechecking everything, new MRI, lumbar puncture and hopefully get a Neurologist and I will be requesting pain management (thanks to the people here, helping me to know what I should be asking for). Sadly I can't tell you that things have gotten any better for me, they've gotten worse, but from reading past pages on here, it is really giving me hope!
Oh and also, you start getting used to the intense pain, and difficulties. It just becomes a way of life.
I really hope the Diamox works for you.
Hannah
I'm on 500mg of Diamox.
It's not a lot compared to what I've been
reading. My opening pressure was only 31, but
my synthesis rate was high too. I just produce too much!
I don't tolerate exercise at all, so losing weight is hard.
I'm not obese, but could stand to lost about 15-20 pounds
that I've gained since being so inactive over the last few years.
I've had a lot of health problems crop up in the last few years.
My neuro suspects I have mitochondrial disease. I'm on the waiting list for Mayo in MN now. It's been a long, hard road.
I'm just grateful they figured this out and I can get help now.
I've had tingling and numbness for years. The Diamox just
makes it a bit more pronounced. The fatigue and fog are
definitely worse, but I'm glad to hear it may ease up over time.
YAY!
I'm thankful for this forum.
Thanks for replying and givng such helpful
tips.
CarlyMichelle
Mary