Hello! New here with question.

[RighterWriter]

Hello! New here with question about headaches.

Hi there! You can call me "Stein" or "Doc"--everyone else does--or just RighterWriter. I'm 20 and a college student and my journey with seizures has been... strange to say the least. I started having seizures out of the blue two years ago after a surgery that damaged a nerve on the roof of my mouth.

At first, they were diagnosed as psychogenic. Truthfully, I was having psychogenic seizures--but that was not all. Those were during the day--textbook psychogenic seizures. But at night, I would have these weird dreams. I would dream that I was having a seizure, and I would feel VERY strange. They were so realistic that I often thought I was awake. Then I would wake up feeling woozy and kind of sick and just plain weird, and then I would just fall directly back to sleep. Now, I have dreams and nightmares all the time, but this is very different.

They never caught one on an EEG machine because they were erratic--only three or four a month. Eventually, I was put on Tegretol and Neurontin. I wasn't happy on these meds--I was really depressed and I felt sick all the time. I went to a different neurologist (nearly two years after I had started having seizures) who took me off the meds to do an EEG. I had one seizure while coming down off the meds, but didn't have another for three months. He put me on preventative medication--Lamictal--which has had no severe side effects and which has not hindered me at all (certainly not like any of the other FRILLIONS of medications they put me on) and I mostly feel great.

However, with the seizures came these odd, excruciating headaches. They were extraordinarily painful, but they would only last a few seconds. At first, that is. I would have anywhere from 15-50 of them a day, but they weren't all terribly painful; only some of them were. Then, as time went on and I tried different medications (unsuccessfully) they got worse. Not only longer but more painful. Sometimes I'll have a string of really bad ones that will eventually just run together and become a migraine. The strange thing about this "migraine" is that as soon as I lay down, it goes away. When I get back up, it comes back.

I have been tested for low CSF (negative) and any kind of abnormalities in my brain (positive, but unrelated--enlarged pituitary gland and benign cerebellar atrophy). No tests have shown anything that might be helpful. I have tried Inderol (made me sick), Imitrex (didn't do anything, and I'm allergic), Topomax (made me sick), Ibuprofen 800 and other Advil products (doesn't do anything), Vicodin (doesn't do anything), Excederin (doesn't do anything), Naproxen (doesn't do anything), Aleve (doesn't do anything), and Aspirin (doesn't do anything). The only things that seemed to help were Tegretol and Neurontin; and now Lamictal.

So here's my question... is it possible that these headaches are actually just a strange form of a seizure ictus? I've never heard of that happening, but the only thing that seems to help is AEDs, and I feel really weird after I've had one--woozy and disoriented. If I have a bunch of them in one day I get REALLY tired and all kinds of muddled.

I'm sorry it's so long, but I really want to know. I have an appointment with my neurologist coming up and I'd like to discuss this with him, but I don't want to go in and make myself sound stupid...

Nice to meet you all!

 

[epileric]

Welcome to CWE

I used to get headaches a while ago that my neurologist said were related to my seizures.

She said that if the headache is a constant pressure rather than a throb then it's probably neurological.

Meanwhile, make yourself at home & try using the "search" option at the top of the page (3rd from the right) to see what everyone else had to say about headaches.

 

[RighterWriter]

That sounds kind of like it, but they're so short and so painful that it's more like being brained with a cricket bat.

Thank you for answering! I'll look.

 

[Nakamova]

Hi RighterWriter, welcome to CWE!

The headaches you are experiencing are very likely related to the nerve damage you suffered. If it was the trigeminal nerve (the one on the roof of the mouth), it's likely that you are experiencing a form of trigeminal neuralgia. Typically, when the trigeminal nerve gets irritated, there are at first brief moments of intense pain, like an electrical shock in one side of the face. This pain comes in repeated waves that can last an hour or more. People start off having short, mild attacks, with periods of remission. But then trigeminal neuralgia can progress, causing longer, frequent attacks of searing pain. That sounds like what has happened to you.

These attacks aren't seizures, they're very intense pain related to the damaged nerve. They don't respond to most painkillers, but they do respond to to some of the anti-seizure meds (Tegretol, Trileptal, Dilantin, Lamictal, Neurontin, and Lyrica) -- which essentially block the pain signals to the nerve -- as well as to muscle relaxants like Baclofen. Sometimes a tolerance develops, and either the drug or dosage needs to be altered. If the meds stop working altogether, there are other treatments involving surgery and/or radiation.

Ask your neurologist about the possibility that this is what is going on.

Best,
Nakamova

 

[RighterWriter]

That does sound very similar, except for the "one side of the face" thing. I've actually looked into trigeminal neuralgia, and it doesn't quite sound like what I have, no matter how similar the rest of it is. See, these move and they don't really affect the nerves of my face. It WAS the trigeminal nerve that was damaged, but the symptoms aren't quite the same, which is why I came here... There are several other symptoms that don't fit my headaches, but because of the lateness of the hour, I don't really remember them off the top of my head. Could it just be some offshoot of that?

I also have (proven) neuropathy in my left arm that seems to be unrelated to the nerve damage done to my trigeminal nerve. it started at about the same time, though, but I had also just gotten over the stomach flu, and when I start throwing up, things get ugly quickly. Something about my system makes it so that when I start throwing up, I can't stop without external intervention... Think I might have blown a gasket?

 

[Nakamova]

There are variants of trigeminal neuralgia that have the head pain without the facial sensitivity. Or it could just be trigeminal neuropathic pain (TNP), rather than full-blown neuralgia.

It does sound like you have a few other neurological things going on. The uncontrolled vomiting can be Cyclic Vomiting Syndrome. They don't know a lot about this syndrome, but it seems to be related to (or a kind of) migraine.

 

[RighterWriter]

Wow, really? That's interesting. I'll look into that. Okay, thank you for the info! Much appreciated!