Did anyone think they were crazy prior to diagnosis?

[katzy]

I didn't tell my parents about my simple partials(I was 12) because I didn't know what they were and they went away after 15 mns. I thought I was crazy! My parents only realized that I was having seizures when I had a full blown tonic clonic in school. So they took me to my neuro.

sleep deprived EEGs pick up seizures only if your brain shows abnormality when you're having the EEG. My seizures were all 3 months apart or came in clusters every other month prior to taking medications. My doctor took my family history since she couldn't find anything on the 40 mnt EEGs and gave me meds. My dad has seizures every 3 years or so. My little cousin had febrile seizures when she was a baby and my other older cousin had seizures when she was pregnant. So these were enough for her to put me on meds.

Doctor then did a 3 day VEEG and found tiny little spikes and waves that were abnormal coming from my frontal lobe. So go to an experienced doctor who can read EEGs really well. A doctor with at least 15 years experience would be the best.

IMO Temporal Lobe Epilepsy would prevent you from physically injuring yourself because most people with TLE have auras, so you can get to a safer place if your seizure generalizes. Mine unfortunately is FLE, so I never have auras

 

[Cint]

I never felt I was crazy prior to my diagnosis of E over 30 years ago. Mine began as simple partial and slowly progressed to CP. I knew something was wrong because I was just "feeling weird", like I was fading away during the aura and that was never "normal" before. But when I went to the first dr., he diagnosed me as having hyperglycemia without any testing.
A month later I went into my first TC seizure on the way out of the shower and fell on the hot water handle. I ended up lying under the HOT water long enough to suffer 2nd and 3rd degree burns on my back on right arm. I was in the hospital for 2 months and had multiple skin graft surgeries and EEG's done.

IMO Temporal Lobe Epilepsy would prevent you from physically injuring yourself because most people with TLE have auras, so you can get to a safer place if your seizure generalizes.

Mine turned out to be Temporal Lobe E. And even with "auras", I have tried numerous meds and have had TC seizures. An "aura" is a simple partial seizure. And I've had multiple TC's where I've ended up with bruises, black eyes, cuts, more burns. Accidents can/DO happen even with TLE. And with CP seizures, too.

 

[Cint]

Doctor then did a 3 day VEEG and found tiny little spikes and waves that were abnormal coming from my frontal lobe. So go to an experienced doctor who can read EEGs really well. A doctor with at least 15 years experience would be the best.

And what's even better, is an epileptologist, one who specializes in epilepsy.

 

[katzy]

And what's even better, is an epileptologist, one who specializes in epilepsy.

yeah. I like them to have some experience too. I have this "phobia" of new doctors. Because when I had SJS/TEN this young doctor said it was measles even when I showed him my Trileptal prescription bottle and said I've had measles vaccine when I was little! He gave me some Tylenol and sent me home. Then I had to go to a teaching hospital to get diagnosed as SJS.

Mine turned out to be Temporal Lobe E. And even with "auras", I have tried numerous meds and have had TC seizures. An "aura" is a simple partial seizure. And I've had multiple TC's where I've ended up with bruises, black eyes, cuts, more burns. Accidents can/DO happen even with TLE. And with CP seizures, too.

I guess TLEs are hard to control with drugs. I had a simple partial when I was 12 and one aura when I was 15 before my tonic-clonic. Those are the only times I had simple partials. I hope your seizures are better controlled now.

 

[new shoulder]

crazy? yeah.

i had epilepsy for many years, undiagnosed, screwing with my emotions, my perceptions, my behaviours. I was depressed since childhood, almost, and in my adulthood entered into a long period of psychosis, or self-delusion, in which i falsely attributed to odd sensations i would sometimes get, and the deja vus, to making accomplishments in meditation. Yeah, i used to believe some pretty weird stuff.

Once i shook off that delusion, i started having more pronounced epileptic fits. A couple times, i just blacked out and hit the ground. Many times, i woke with a feeling of dread or panic, as if waking up was a way to escape something, although i could never remember what i was running from. I began to have uncontrollable crying spells which would come and go at their own whim, having nothing to do with what was going on.

As a result, i was sure i was crazy, and depressed, but epilepsy didn't even occur to me. I was diagnosed as having this or that disorder, and my family thought i was manic-depressive. But eventually last year i had some doozy grand mals that laid everything out on the table for all to see.

I don't like having epilepsy, but maybe it's better than being crazy.

 

[JLogefeil]

Yes, I still feel crazy. That's all I ever get is mental health diagnosis. I understand how you just want that diagnosis, the only diagnosis I want is that I have epilepsy I don't care about anything else.
So I don't think your crazy. If you want to know more about me storie you can check out my videos at www.youtube.com and type in the search box jujub428

 

[popcorn]

I had my sleep deprived EEG done on Friday. The technician said she didn't see any obvious seizure activity, but a doctor comes to the hospital on Wednesdays to read them. She said he can look closer at them than she can. I have a bad feeling it won't show anything. But I will make an appointment with an epileptologist after all the testing is done to get his or her opinion.


I had one of my suspected seizures this morning. It has been 17 days since the last.

This is what happened:

I went to bed last night after a nice weekend of being clear headed and ambitious. I got things done to prepare for our busy week of homeschooling and the other stuff we do. I was feeling accomplished. No weird deja vu, jamais vu, strange memories, anxiety, aggression, or dream state. I had trouble getting to sleep because of illogical guilt and feelings of doom. Once I did get to sleep, I kept being woken up by a panic feeling. Heart pounding, illogical worries in my head. One worry after the next. I felt like I was such a failure. I was also very hot and restless. I tossed and turned. I was in a light sleep state around 7:30am when I got 'that feeling'. Intense fear, unfamiliar in my surroundings, feeling I am in a place I shouldn't be. I felt like I was in a ski lodge. My face and nose felt weird. Instant heat and tingling with rising in the abdomen. I started coughing because I felt nauseous and like I just had to get something out. I sat in my bed all disoriented and scared and feeling as if I would vomit. I got up and vomitted a few times. I couldn't stop the violent heaving that only brought up foam. I had an uncontrollable scream with it. I needed my husband with me because I was so scared. I took a half a milligram of alprazolam and I am feeling almost normal now at nearly 10am.

:/ Why couldn't this have happened on Friday?!?!?

 

[petero]

not crazy, but I think I'd had social difficulties from feeling out of place- which later really helped fuel a full-blown alcohol addiction. I've wondered if the feelings I'd had may have been seizures
well, I guess crazy I a loose term- so maybe

 

[KarenB]

I had trouble getting to sleep because of illogical guilt and feelings of doom. Once I did get to sleep, I kept being woken up by a panic feeling. Heart pounding, illogical worries in my head. One worry after the next. I felt like I was such a failure. I was also very hot and restless. I tossed and turned. I was in a light sleep state around 7:30am when I got 'that feeling'. Intense fear, unfamiliar in my surroundings, feeling I am in a place I shouldn't be. I felt like I was in a ski lodge. My face and nose felt weird. Instant heat and tingling with rising in the abdomen. I started coughing because I felt nauseous and like I just had to get something out. I sat in my bed all disoriented and scared and feeling as if I would vomit. I got up and vomitted a few times. I couldn't stop the violent heaving that only brought up foam. I had an uncontrollable scream with it. I needed my husband with me because I was so scared. I took a half a milligram of alprazolam and I am feeling almost normal now at nearly 10am.

:/ Why couldn't this have happened on Friday?!?!?

Our son, who is 8 y o and has temporal lobe epilepsy, is non-verbal, so he can't describe all the feelings he has prior to a seizure; however, the restlessness, fear, coughing often happen just prior to a seizure, and his seizures are always preceded by several screams.

I know how absolutely frustrating it is NOT to have anything show up on EEG. Jon just had a 12 hour sleep EEG, and of course, didn't have a seizure (even though he'd been having 2 or 3 every night for the week prior -- go figure).

I think you should have your husband videotape your "episodes" and take that to the neurologist.

 

[KarenB]

Jon went to the med university yesterday, where we met with a team of neurologists and psychiatrists.

Unfortunately, we were unable to capture a seizure on his video sleep EEG, so they weren't able to see the psychotic behavior. However, the EEG did show abnormal spikes in the temporal lobes, and when seizures have been caught on EEG before, they initiated in the temporal lobes. There is a strong link between temporal lobe epilespy and psychosis.

Therefore, the consensus was that his psychosis is related to his epilepsy, and if the seizures are brought under control, so should the psychosis.

They also discussed increasing his medication because the seizures are still not under control (he's been averaging about 2 a night). However, after much discussion, the decision was made NOT to increase meds because the meds themselves might contribute to psychotic behavior.

Instead, we got sent across the hall to see a pediatrician that specializes in nutrition to see what could be done to tweak the Ketogenic diet (he's been on for 18 months, and it kept him seizure free for 11 months) to regain seizure control. In addition to this, he just restarted a regime of vitamins/supplements (lots of B6 and also has supplements like taurine, carnitene, magnesium, selenium, etc) and flaxseed meal (Omega 3). After just 3 days on this regime, his seizures reduced to just 1 or none each night, so that is promising. Also, his nutrition doctor is adding a small amount of MCT oil (medium chain triglyerides) which should help the keto diet's effectiveness.

So...we get to give this a try for 2 weeks, and then meet back with the team to see what the early results are.

 

[popcorn]

Karen, I am so sorry your son and your family have to go through this. Poor little guy. What an ordeal it has been/ still is for you all. I hope there is some kind of breakthrough for him.

 

[KarenB]

Thanks, we had an initial breakthrough with the ketogenic diet, which bought us 11 months of seizure freedom, and also about 8 months of being med free.

He has now relapsed, but we have a great team to work with, and we are hopeful that tweaking the diet, along with the new meds, will work. The last 3 days have been looking good.

Two areas I am exploring more now through research are the roles that oxidative stress and also inflammation play in epilepsy. I am quite keen on seizure control via nutrition with as little meds as possible. We did the medication route for 7 years, with dreadful side effects, and little efficacy.

 

[KarenB]

Well, he wasn't supposed to get an increase in meds, but instead of giving us 2 2-mg tabs of Diazapam (he has a nightly dose of 4 mg), the hospital pharmacy gave us 1 5 mg tab to take per night. I didn't think it would matter that much getting one more mg, but, seriously, you should have seen him...
...last night bouncing off the walls (literally) until midnight
...this morning he...
-- threw my laptop on the floor
-- tried to throw the TV on the floor
-- tried to throw the glass top off the coffee table (got it halfway off)
-- stuck his fingers in the fan (repeatedly)
-- was throwing his sippy cup at everything

Ai ya!! I guess he's having a paradoxical effect to Diazepam -- usually it makes people drowsy, but sometimes in kids it can have the opposite effect.

 

[KarenB]

This article just came out at the Epilepsy Therapy Project:
http://www.epilepsy.com/newsletter/...9c4072-Epilepsy_News_9_12_12&utm_medium=email

 

[slhrn101]

did anyone else think they were crazy prior to diagnosis

i have been reading some of they new comments since i posted my original post. my husband tells me that after tonic clonic seizures i can be very sensitive to everyone around me. he says that i cry very easy but that i also get angry easily. i have noticed that i find it hard to control my emotions since the seizures started 1 1/2 years ago. for everyone out there who feels alone do not give up and you are NOT crazy!!!

 

[promisemeforever]

7 years im finally not crazy

i have been waiting for a diagnosis for 7 years and the one who figured it out was my boyfriend. I have gone to doctors all throughout New York and none of them could understand what was happening to me. Doctors from neurologists, cardiologists, gynecologist, basically any type of "ologist" and none of them could figure out what was wrong. As a patient they think that if there behind a door you cant hear them, but you can. Ive herd multiple times that it was all in my head, that i was crazy, but im not. I know people say its wierd to say but after going doctor to doctor i wished they would find something just so that i know i wasnt crazy and so that i could get help. I was diagnosed with catamenial seizures. I now know how to plan around it and am about to start medication for it. I dont remember the last time I didnt have a doctors appointment or test scheduled every other week. Yes I have seizures, but now I feel free, knowing im not crazy, and i can be helped and able to move on and live my life.

 

[PFunk]

I still think I am crazy....

(fun crazy, not killer crazy)