My exhusband and I have maintained a friendship for the past 37 years. In fact, we make much better friends than we do being married, so this has been fine for both of us.
I received a phone call from my ex last night.. He is in the hospital with bacterial spinal meningitis. Now, he gets it!! Now he understands what I mean about an unrelenting worse headache you can ever have. He understands the mental confusion, the nausea, the fear of the unknown.
It is so wonderful to have an ally, especially such a close friend. I am so sorry that he got so sick, that he was so close to death, but, now that he is so much better, he and I have another special link. We know. We understand.

sometimes I wish this would happen to my ex, so he would understand. very evil I know, but I know you must all have had similar thoughts. the most frustrating thing with this illness is being so misunderstood.

I didn't speak to my sister for ten years because she didn't understand my IIH, nor what having a shunt was about, the loss of vision or the side effects of the medication. However, 6 months ago she was diagnosed with IIH, after being misdiagnosed with CFS. Now she gets it! My take on it is Karma harsh I know, but sometimes the best way to understand something, is to walk in those shoes.

How true. This is why I am so lucky with my Neurologist. She has MAV (Migraine associated vertigo). Boy does she get it!!

My ex will be having to inject meds via a tube they inserted, but at least he can do it at home instead of having to stay in the hospital. I am thinking this is the 2 X 4 I have been warning him about for the past zillion years. Now it has come to pass, and he understands. I have his attention. Too bad it's so many years too late.!!

AHA! I strongly suspect that CFS is just IIH when no one thinks to get a tap, and papilledema is not present. this illness is NOT as rare as we think, I'm convinced.

Interestingly, my ex has found out that he is a CSF leaker. They have found a hole through the sinus cavity. His surgeon is going to do a patch job using a bone graft and tissue transfer from his good nostril, and then he will be in the hospital , either with an ICP bolt or lumbar drain for 3 days. The latest is, if he pops another leak, they will install a shunt. They are thinking the meningitis got in through this hole.

Spoke with my ex today. His hole has been patched, his lumbar drain has been removed, and he hopes to be going home tomorrow. Looks like it won't be needing a shunt unless he pops another leak soon. I forewarned him to be a slug for a couple of weeks. He is already talking about mowing the lawn and changing a tire on his daughter's car. So glad he is my ex!!