Idiopathic Intracranial Hypertension and Lithium?

I was one of the lucky few to develop Idiopathic Intracranial Hypertension about 3 years ago. It was the beginning of the end of my career in science. I had been on lithium for about 7 years and suddenly started having unbearable migraines that would not respond to traditional migraine meds. These progressed to severe daily, non-step headaches with the extra bonus of severe migraines through the week. This was accompanied by papilledema.

I had an MRI that found to my delight, a pituitary microadenoma, but no large tumors that would trigger the kind of severe pain I was in. So they did a lumbar puncture (I cringe at even typing the word) and found my opening pressure to be quite high.

I was put on drugs to slow down the production of cerebral spinal fluid, and sent on my merry way by the neurologist. No one knows what caused this, but the fact I was on lithium for 7 years may have been the trigger. Lithium is "associated" with IIH, but that's about all they can say. And IIH happens so rarely, that it's a pretty slim risk with lithium use. I guess I won the lucky jackpot.

The thing that does floor me is that my neurologist does not take my pain issues seriously, even though I have become completely and officially disabled due to the combination of the IIH and BP. The neurologist keeps telling me that my pain is really because I'm depressed, and she can't help me with pain management.

And of course, the psychiatric nurse says that the reason I'm not responding to my meds is because of chronic pain. Chicken and the egg anyone?

I've gone to different neurologists, but they say that that I'm just having regular headaches, since the pressure is somewhat under control with the CSF drugs I'm on. Basically no one knows what to do with me, so they just send me on my merry way. Funny though, when I'm taken off the CSF meds for 3 days and a spinal tap is taken, my CSF pressure has shot way up to abnormal levels. Go back on the drugs it comes down somewhat.

The psychiatric nurse I see has been talking about putting me back on lithium. I think he's f*cking crazy. There is *no* way I'm going back on it, when I already have high pressure symptoms. I never had very good coverage with lithium anyways.

Don't get me wrong, lithium works great for a lot of BP people, it just never did it for me. And even though it can be linked to IIH, there is no way to know for certain that was the official trigger for me. Even if it is, luckily the chance of IIH is very small for others. But if you do start having severe migraines while on lithium, please go to your doctor.