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...
Last night I landed back in the ER for non-stop vertigo, head pressure and pain. And of course, they did another LP. (Painfully...I might add). My opening pressure was 25! After 2 recent LP's over the last two weeks, 1500 mgs. of Diamox daily, ummmmm.....why is this occurring???
The nausea medications (phenergan) and vertigo meds (meclizine) aren't helping so the Doctor is putting me on valium so I won't care if the room spins. Meanwhile, even with this last LP, I am still spinning and I still have head pressure/pain.
TJ....Can you offer some insight here? Anyone?
Thanks,
MM3
The nausea medications (phenergan) and vertigo meds (meclizine) aren't helping so the Doctor is putting me on valium so I won't care if the room spins. Meanwhile, even with this last LP, I am still spinning and I still have head pressure/pain.
TJ....Can you offer some insight here? Anyone?
Thanks,
MM3
sorry this is going on for u. I know that LP's only last up to 12 hours and then your pressure returns. I also was wondering if some of your side effects are from the diamox? I can't remember how long you've been on diamox?
I am concerned about you getting so many LP's since too many LP's can cause other problems, so please talk to your Dr. about that. Sorry I'm not much help but I want you to know that I am sending you healing energy and I hope you get relief soon. Jazzy
Wow, I have never experienced vertigo and only nausea a couple times so I dont have any words of wisdom this time around. You said 25 with a !, is that becuz it was higher than you thought or lower than you thought?
Jazzy mentions only 12 hours until your pressure returns which is true but for some odd reason there are some of us (me included) that experience some pain relief for 2, 3, 4 weeks after a LP. I have only had 5 LPs but 3 of them left me with what I call managable headaches for 2-4 weeks. By manageable I mean they are tolerable and caffeine and OTC drugs work fairly well to reduce the pain level and I can sleep at night vs normally I end up taking stronger drugs with marginal results and cant sleep becuz of the pain.
I was pretty close to going to ER myself just this morning. My head feels like a low pressure HA right now and I have never had that other than after a LP. It happens and I cant figure it out either so I hope your ER trip helped. Sorry I cant be more helpful.
Jazzy,
Just curious about your LP comment. My neuro will not do them more often than once every 3 months but others have said they get them monthly. What other problems were you referring to?
TJ
I don't know about how much insight I can offer, but I get daily 'moments' of vertigo where I almost fall down sometimes. I keep constant pressure-feeling in my head and have daily nausea, as well. Some days I don't feel as nauseated, the past few days have been ok, but I haven't noticed any rhyme or reason to it, either.
I share the same symptoms.
It does seem like you've had quite a lot of LP's in such a short period of time, though!
I'm not sure why with all of the things you've done to lower the pressure/CSF that the OP was 25. 25 isn't THAT high, but I'm not sure it should have been even that high for all the measures that have been taken.
I hope you start to feel better...
I hate that most of us are at a point, or have been at a point where we just... don't know what the hell to do.
The second LP was done while I was staying in the hospital. This was done rather well by a neurologist and my pressure reading was merely a 9 at the time. In her words she said, "The Diamox is working."
Here we are one more week out and I am having this attack of vertigo and pain. (Found out that the vertigo comes from pressure being placed on vestibular nerve). I told my husband on the way to the ER that if they suggested another LP that I wasn't doing it. Firstly, because I didn't expect my pressure to be high as I was on Diamox and had recently had 2 other LP's. However, they said they needed to get a reading. The ER doctor said that by hospital mandate he had to try first prior to calling an anesthesiologist. So, he tried and tried and I cried and cried. I felt shockwaves run down my legs and feet. At one point it felt like he hit my kidney. It was horrible. Finally, he called anesthesia and they performed a proper LP. I was surprised that the pressure was at 25 because I was expecting it to be low. The diamox and recent LP's should have kept it down correct?
And so now, I've had this recent LP and I can tell you that I feel no different now than when I went in. Feeling a bit discouraged.
The second LP was done while I was staying in the hospital. This was done rather well by a neurologist and my pressure reading was merely a 9 at the time. In her words she said, "The Diamox is working."
Here we are one more week out and I am having this attack of vertigo and pain. (Found out that the vertigo comes from pressure being placed on vestibular nerve). I told my husband on the way to the ER that if they suggested another LP that I wasn't doing it. Firstly, because I didn't expect my pressure to be high as I was on Diamox and had recently had 2 other LP's. However, they said they needed to get a reading. The ER doctor said that by hospital mandate he had to try first prior to calling an anesthesiologist. So, he tried and tried and I cried and cried. I felt shockwaves run down my legs and feet. At one point it felt like he hit my kidney. It was horrible. Finally, he called anesthesia and they performed a proper LP. I was surprised that the pressure was at 25 because I was expecting it to be low. The diamox and recent LP's should have kept it down correct?
And so now, I've had this recent LP and I can tell you that I feel no different now than when I went in. Feeling a bit discouraged.
When I received my official diagnosis, in the ER, I was too drugged to even remember the name of the condition the doctor told me I had. I just remember it had the word 'tumor' in it, and it had something to do with spinal fluid.
They did an LP and I felt those same shockwaves down my legs and I bawled my eyes out for hours. The ativan in my IV didn't help either, that stuff makes me super emotional. But they left me alone in the room for quite some time and I felt like I was dying from all the meds and then the pain... I didn't hardly move for like 3 days after-but I went in for headache relief. The LP gave me a nice like 2 week break from them!
I don't understand how we all have the same condition and yet the same treatments can affect us all so differently. =( I wish we knew why.
I know I am not Jazzy, But one of the big problems with taps being done too frequently is the scar tissue they cause, Part of my paralysis is caused by the scar tissue from the 10 taps, and two shunt surgeries all in the same area, since taps are a life long thing for many who are not shunt candidates they should not be done too often because that scar tissue causes each tap to be harder.
Even under fluoroscopy my taps tend to be traumatic because of the scar tissue.
Yet another wonderful mess we all get to enjoy. Will is ever end? I guess that explains why my neuro is so against fequent taps.
Thx,
TJ