Ictal Headache Sufferer says Hi!

[Phidippus]

After 34 years of battling 'mental illness' I have recently discovered it was epilepsy all along.

The professionals missed it because my epilepsy is kind of rare. I get ictal headaches. The extent of most of my seizures is a bad headache with vertigo, muscle twitches and baffling mood changes. I also get a bit more stupid and uncoordinated when the headache comes on.

I tried all the migraine medicines to no avail. Gabapentin proved useful, but Ativan is my best friend. Only Ativan can quell these monstrous headaches that make me feel like I'm walking in a bubble.

I've had headaches all my life. Bad ones that made me mad and irritable, cloudy and depressed, stupid and forgetful. Nothing I took ever helped. All I could do is lay down and sleep. They were just something I lived with until last year I was placed on an anticonvulsant called Lamotrogine for mood stabilization. Well, Lamotrogine gave me a bad case of 'forced normalization' and I became psychotically depressed on it(forced normalization is pretty rare too). When I was taken off, the headaches I'd always suffered became monstrous and I started getting strange sensations along with them. Muscle twitches, weird smells, strange thoughts. They were super headaches now. You know how some super heroes get powers by coming into contact with toxic waste? Well, I got super headaches because of those toxic little pills I took.

I ended up at a phospital after they took me off the Lamotrogine. I couldn't think straight, I was getting signs from God and I was overwhelmed with anxiety and paranoia and depression of the suicidal kind. When I did things to improve my mood, symptoms abated, but the bizarre ass headaches continued. I saw a neurologist about it and he prescribed MRI and EEG tests which jsent me into non-convulsive status epilipticus. After each test I was admitted to the ER with seizure. The friday after the two tests my ongoing headache became so bad I could barely think straight and I checked into Porter ER. My overnight stay was punctuated by bouts of agitation, incoherence and crying. I think I was diagnosed Schizoaffective by the psych counselor who visited me.

After months of research, speaking with epileptics and working with neurologists, I am still awaiting an official dignosis. I recently did an ambulatory EEG and hope the findings might shed some light on these horrible headaches I get.

In the meanwhile, I'm stewing. Pissed at ten years wasted trying to treat a disorder I did not have and now carrying the stigma. All of the neurologists I met with couldn't look past my psychiatric diagnosis and are hesitant to recognize my epilepsy. Ictal headaches are rare. Even more rare is an Epilepsy that presents mainly as ictal headache.

My headaches are well charted, though, and my symptoms can't be migraine. I can't treat them with migraine medication-well, I know some anti-epileptic drugs prescribed for migraine will work for me. Only anticonvulsants can treat my headache.

Having learned about epilepsy has helped me tremendously. Sensations I get are not 'psychosis', though I get that too. The abrupt feelings of fear and visual perturbations don't cause me to panic anymore. Its so much easier to think I'm having an epileptic symptom-I know exactly how I'm going to feel when a headache comes on and what I'll be like when it passes. I even know what's going to trigger my headaches. I also know sometimes I'll have psychotic thoughts during my headaches as well as moments of psychosis after they pass. These thought problems used to cause me great distress and panic, but now I know I'm not going crazy. Its all just too many neurons firing around.

I'm popping 2 Ativan a day, contemplating a bottle of Trileptal. Learning the true nature of my brain imbalances has made me whole, but its too bad the seizure headache had to get worse to be recognized as my epilepsy.

Does anyone here deal with ictal headaches?

[Crystal11]

Hello- I get headaches sometimes for no reason or i get them after a seizure really bad. I am going to talk to my new neurolgoist about them when I go. Sometimes liike today, I had a seizure but afterwards i've been nausious, dizzy and sensative to light even though i am visually impaired. I try to link headaches with a "bad day" when seizures are more frequent but usually they are a result of something. Sometimes a headache can be do bad I lay down but then become extreatmly dizzy and feel like i'm falling over and over.

I hope your well and feel better- glad to hear your at peace with your diagnosis of Epilepsy.
-CM

[Phidippus]

Migraines are often comorbid with epilepsies. I got a migraine the day after my first generalized seizure.

[Belinda5000]

Phidippus,

after I have a seizure complex partial, simple partial,tonic clonic I always get a bad migraine .

I've had headaches since I was a teenager myself.

I've had epilepsy 45 yrs.

Belinda

[hawke86]

I know what you guys mean.

[RobinN]

You don't make any mention of having tried nutritional changes.

Migraines are now classified in the seizure family, not headache family. I had them for 30 yrs tried all known meds, with occasional relief. What I finally decided was I wanted to find out why I was getting them in the first place. A doctor suggested that I try ionic magnesium. Bingo... I haven't had a migraine in 4 yrs.

Magnesium was also recommended for my daughter 1000mg for her seizures.
Change in diet has had a profound influence on her seizure threshold.

[flinnigan]

I've had headaches from PMS, TMJ, migraines and seizures. They're all very different from each other. Ictal headaches are the worst. They feel as if my brain is swelling and as if I can feel pressure against my skull and behind my eyes. I would put migraine in a close second. I'd much rather have a PMS or TMJ headache any day.

[RobinN]

Would you ever consider that they might be coming from the same cause?

[flinnigan]

Absolutely. The TMJ however was found on MRI years ago. My jaw is a mess. It stems from scoliosis. My neck, jaw and shoulders all grew quite crooked and it eventually wore out the disc in one of the temporal joints. The primary trigger for all is stress. When I meditate and do yoga regularly I don't really have the headaches or neck and shoulder pain. But for me yoga is much like any exercise I have to force myself to do it. It's mostly just laziness. I know better.

[Meetz1064]

ictal headaches, but only after I have a t/c. That's when I truly go looking for someone to shoot me, or something similar, and then give up and crawl in bed for 24 hours. I don't move, and friends and family wake me up long enough to give me meds........or should i say force them down me.

They check on me very often, because sometimes they're not even sure if I'm breathing.........the pain from those headaches is so monstrous it hurts for me to even breathe

[moonchild1970]

After 34 years of battling 'mental illness' I have recently discovered it was epilepsy all along.

I've had headaches all my life. Bad ones that made me mad and irritable, cloudy and depressed, stupid and forgetful. Nothing I took ever helped. All I could do is lay down and sleep. They were just something I lived with...


...In the meanwhile, I'm stewing. Pissed at ten years wasted trying to treat a disorder I did not have...


Does anyone here deal with ictal headaches?

Wow! You sound so like me. I have been told Fibro for years. And depression, Possible MS.

But finally after almost 11yrs I got a diagosis. So I hear you. It made me so mad too. I wanted so bad to sue them all for wasting my time!!

I have Ictal headaches several times a week when I have the big nocturnal Grand mals.

I agree, it is Godawful! All I can do is crawl into bed and cry.

[morganomics]

Hi, first I must say you said you were admitted to Porter hospital is that Porter hospital in Valparaiso / Portage Indiana? I'm from Indiana thats why ask, and if you are we should get together as ictal headaches are something I have to deal with everyday. I'm 27 and was first diagnosed with epilepsy in September 2009. For 12yrs I've been treated with anxiety, depression and was suspected as having schizotypal personality disorder. In 2008 I had neuropsychological testing and the results revealed I have trouble with my working memory, short-term memory as well as shape recognition. These results were consistent with temporal lobe epilepsy, and are probably the only empirical results that point towards epilepsy. My EEGs and MRIs, sleep studies, and other tests have been inconclusive. Though my headaches leave me sleeping 14hrs out of the day, going out in the dark when the sun doesn't bother me. Like yourself when the headaches get stronger I feel desperate as there isn't too much I can do to quell the pain, except sleep or engage in intense physical exercise. Like yourself I became psychotic while taking Topamax I know you were taking a similar med. I ended up in the ER twice after suicidal thoughts and a month later while upping my topamax dose I actually tried to end my life, which is hard to say. I stopped the topamax and magically my intense suicidal feelings disappeared. The months after were filled with guilt and shame for having put my family through such intense pain. Six months on I still have the intense headaches, confusion, vertigo. I can say this is really really hard to deal with and of course it causes anxiety and depression, in fact many persons with epilepsy have depression and anxiety, and OCD, which I have. I'm to see an epileptologist in Chicago soon so hopefully they will have some insight into my temporal lobe epilepsy and a good treatment plan. I'm on Gabapentin as well and though it doesn't work all the time I feel a little bit clearer and the headaches are little better.....sometimes. Its difficult to cope with I know, and the pain of knowing that you were treated for psychiatric disorders when it was epilepsy all along is enough to make you become angry at the psychiatric community entirely. So hang in there and if you are from Indiana we should get together as are stories are so similar!