Question for any fellow narcoleptics

[tabby823]

Hi everyone I was diagnosed in 2010 with Narcolepsy & Cataplexy. One thing that I've been wondering, does anyone here get a severe headache after a cataplexic episode/sleep attack? I was in the hospital for a week in october because I kept "passing out" although that's not what I called it. I would feel strange, fall over, and be completely limp for 30ish seconds. Then I would get up and sometimes have trouble walking and a few hours later I would get a MASSIVE headache. They thought it was seizures but it's not. I think it is related to the narcolepsy. . .but I also suffered a severe traumatic brain injury as a child and had multiple strokes so I have what they call a "complicated" history. . .

Any thoughts or experiences would be welcome!

[Paderla Anitha, DNB]

Hello and hope you are doing well.

Your symptoms could also be due to an entity called TIA or transient ischemic attack, which as the name indicates there is a temporary lack of blood flow to a particular part of the brain. This usually recovers, but these people are more prone for strokes.

It could be due to postural hypotension, where in upon standing blood pooling occurs in the legs and the brain is deprived of adequate blood supply and oxygenation.  This is more common in people with diabetes mellitus.   So, please have yourself evaluated.

Hope this helped and do keep us posted.

[tabby823]

Well I did get a 24 hour video EEG when I was in the hospital which actually did capture one of the "episodes." However there was no change in brain waves and the EEG showed no seizure activity. They also did an MRI and that was normal (it showed "lesions" but I've had those ever since my injury - there weren't any changes in the MRI)

I got put on a seizure/migraine medicine which made me feel horrible, then had a different neurologist take me off it and say I had inner ear problems, which took me to the ENT doctor who said that I have "balance issues" but they aren't inner ear related, ordered a MRI with contrast, which according to him showed "narrowing of the blood vessels in the cerebellum part of brain." Which the neurologist then said I didn't have because the report did not say that and the scan did not show it either.

Apparently it is not consistent with seizures, narcolepsy, or migraine headaches. The doctors have NO IDEA. The neurologist also said he does not think it is psychogenic seizures.

Oh and all blood levels are normal. Not anemia, not thyroid problems.

It was happening pretty frequently last semester, but while I have felt weird and intensely dizzy for like half a second quite a few different times I have not fallen or anything this semester. Which makes me wonder: Why did it start? Why did it stop?

[Paderla Anitha, DNB]

Hello and hope you are doing well.

The symptoms you are experiencing could be due to an entity called sleep paralysis. When this happens in sleep the person has difficulty moving his hands or feet. This is the symptom of  Narcolepsy. This is unlikely to cause headaches.

If it's a seizure activity, only an EEG (electroencephalogram) can help confirm this. This is done under the guidance of a neurologist. Seizures do cause intense headaches.

Hope this helped and do keep us posted.