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...
I have to say the last two months have been ones full of research and yet I still find myself asking lots of questions. I was diagnosed with PTC in early October after an ER visit for a horrible headache that wouldn't go away and an LP while there. The pressure was 31 and I was given strict instructions to follow up with my PCP the next day. I ended up back in the ER then admitted into the hospital because of a leak, and 5 days later the doctors finally listened as I described my symptoms and did a blood patch. Since then I've been in two different hospitals, had 3 more LP's and put on 1000 mg of Diamox, then taken off, then put back on. (Let me tell you, it's been exciting...NOT) I have been told the field vision test is "normal" but the MRI has shown fluid behind my eyes (I can't remember the name of where exactly that is). The neurologist at my very small hospital (where the nurse told me she had never seen something like this before) told me my ventricles are small while I was in the hospital. They have not said what to do about that, but I wonder if that leads to higher pressures??? I feel like I'm very new and don't even know what questions to ask at this point. I do know I am in a LOT of pain, even after the LP I have an area in the back of my head that just HURTS, then when the pressure goes back up, it feels like a very Tight headband wrapping straight across behind my ears. Here are just a few questions I have:
1. Do the Diamox side effects ever go away? I have horrible tingling in my hands and feet, and ringing in my ears constantly.
2. I've read positives and negatives about regular LP's, yet that seems to be the "best way" to get the pressure down (even if for a short time) any insights?
3. I've been told I have migraines in addition to PTC - rarely had a migraine before the diagnosis, they've given me shots of Imitrex, Depakote, Kepra, DHE, and something else - as of yet, nothing has helped. To me, that would indicate I do not have a migraine - any suggestions?
I'm sure there are many questions but as I am in lots of pain today it does not surprise me I can not think of the other ones right now.
Thanks a Million!
Kristena
1. Do the Diamox side effects ever go away? I have horrible tingling in my hands and feet, and ringing in my ears constantly.
2. I've read positives and negatives about regular LP's, yet that seems to be the "best way" to get the pressure down (even if for a short time) any insights?
3. I've been told I have migraines in addition to PTC - rarely had a migraine before the diagnosis, they've given me shots of Imitrex, Depakote, Kepra, DHE, and something else - as of yet, nothing has helped. To me, that would indicate I do not have a migraine - any suggestions?
I'm sure there are many questions but as I am in lots of pain today it does not surprise me I can not think of the other ones right now.
Thanks a Million!
Kristena
I'm sorry your going through this, but hopefully you'll find this a good place for answers and support. I was diagnosed in an ER just like you with an openning pressure of 37. I was put on diamox, then lasix, and had LPs as treatment too. The thing that helped me the most with Diamox tingling was drinking a coconut water everyday. It doesn't taste great but I would mix it with juice, and it helped so much. I was treated for having migraines as well before I was diagnosed with this disease and nothing ever helped. Here I am almost 2 years later and I still don't know if I have migraines or not. I do get worsening headaches around my period, which I assume are migraines, or is it IH?? As for LPs for treatment I'm sure you'll get a million different perspectives, I can only tell you my experience. I was getting LPs from my neuro when headaches were unbearable, and it was happening about ever month to month and a half, soon my LPs were getting more and more difficult. It was taking my neuro and ER drs multiple tries. It finally resulted in my neuro saying I have too much scar tissue from LPs and I was referred for a vp shunt. My vp shunt has been a life saver, but I just had two revisions the end of October, so that's added a new round if issues. Good luck with everything, and I hope you get some relief soon!
Nicole
Have they done any imaging of your optic nerves? That is a good indicator of the pressure on your eyes, but not 100%. I know of at least one person who had no papilledema (swelling around the optic nerve) and still suffered visual changes and damage.
My Diamox side effects got "better", but never completely went away. I was able to function after a while the last time I was on it. I just got put back on it because of increase in papilledema. *sigh*.
2. Regular LP's, from what I've researched and read, can be helpful or detrimental. LPs are very invasive and can cause damage to your body. They are necessary, though, but I think that meds are the first line of defense. If those don't work, the conversation should be shifted to shunts. If that doesn't work, then you are resigned to regular LPs. Don't quote me on that, though. I'm sure someone else can answer that might have more information on that. So far, meds have worked for me...well, until this time, but I'm still at the wait and see point.
3. I was diagnosed with migraines after my IH diagnosis, as well. It seems to be common around here.
Get used to forgetting things, losing your train of thought, and staring blankly for several seconds at something before realizing you are doing it. With this disease, you get a pass at being dumb. Well, at least here, because we understand. *hug*
1. Diamox symptoms can get better over time. Some folks just don't respond well to this treatment and need to find alternatives. I like Nicole's suggestion to try drinking coconut water -- think I will try that myself the next time these symptoms come up.
2. Most docs are moving away from serial LPs because they present such a risk for serious infection. Seems to me the current thinking is to try drug therapy first (i.e., Diamox), then if that is ineffective, start talking about ONF, shunt or stent. Agree with Crystal on this one -- if you don't have a neurologist, you really need one. Also a knowledgable OD. If you are lucky, you might even have an NO (neuro-ophthal) in your area, which would be ideal.
3. I *did* have migraines before I developed IH, and although I have some world-shattering headaches now, I have not had a MIGRAINE headache in three years. I can't speak for anyone but myself, but I wonder if IH headaches don't "describe" so similarly to migraines that they are simply dismissed as that type of HA when they really aren't. Some folks here do have migraines, but I agree with you that if the "tried and true" migraine remedies aren't helping at all, migraine probably isn't your issue.
Hugs, ~ Bex