I was diagnosed with ADEM on Sept 4th. After the lumbar puncture I had a spinal headache that lasted for about 2 weeks. For the past couple of days I have been having headaches again. They are unlike the headaches I felt with my initial ADEM attack. More like the spinal headache but only seem to last a few seconds but come and go every minute or so. My neurologist said this was normal, however, I haven't been able to find a medication that helps ease the headaches at all. I have tried fioricet, Neurontin, codeine, imitrex and phenergan. The only thing that helped was Dilaudid but I really need to be able to function and the likelihood of them prescribing that for me is slim to none (i imagine).

Has anyone else experienced headaches after your initial ADEM attack? Is there any medicine that helped you that I didn't list already? I'm really desperate :( Thank you


My daughter experiences severe headaches after her second LP the other week. It was really frightening and the hospital had no real answers. After searching the net I found that the headaches are likely to be caused by fluid leaking out, resulting in an imbalance of the fluid cushioning the brain. The advise was that no painkillers will help and that a high intake of caffeine would do the trick! Apparently the caffeine constricts the vessels and stops the leakage. I thought they were joking, but after reading several forums with same advise, we gave it a go. After having been in bed for 4 days, not being able to move, our daughter was more or less back to normal after 2 cans of high energy & caffeine drinks :) Skip the drug and have a coke instead! May not work for everybody, but it is certainly worth a go.

Hi MIchelle,

Our son had a horrible headache as well after the spinal, but unfortunately there wasn't a medication that helped. I wish you all the best of luck and hope it passes soon! Hopefully someone else will have better information

Christina, mom of ADEM survivor

Hi Michelle!

I suffer from permanent damage to the tenth cranial nerve among others. It is not a headache in the usual manner - the skin on my head feels like a blowtorch is aimed at specific points. The slightest breeze ruffling my hair is torture. Without Tegretol and Neurontin, I am in continuous pain. I take both which in combination quells most of the nerve pain. I also take lots of ibuprofen, knowing full well the possible side effects of all of the above. But a life with manageable pain is better than no life at all with the excruciating pain from before.

So yes, after ADEM, I have had longterm head pain. My initial attack was in Jan 2009. Since then, I was also diagnosed with Celiacs and severe gluten ataxia. Accidental contamination of my food with gluten renews the intense pain from the early days.


Stay strong LtRipley. We're here for you..