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normal eegs....i feel like i'm going crazy

Fri, 10/13/2006 - 01:01
Ok I know this is long, but I really need some help figuring this out. I started having weird symptoms in May of last year. I thought they were panic attacks so I didn't pay them much attention, even though I knew they didn't really have the symptoms of panic attacks. After a couple of monthes I finally looked up panic attacks on the internet and discovered I had known of the symptoms. Somehow I got on a page that talked about seizures and it was there I recognized my symptoms in the section on simple and complex partial seizures. I have worked with adults with developmental disabilities for many years and a lot of them have seizures. I never expected that to be my problem. It all starts with a weird sensation that I can't really describe. Then I start to smell a chemical smell. I taste blood in my mouth and then my mind starts racing and I see things. Not like hallucinations but things in my head like a memory of something. It all seems really familiar, but after the spell is over I can't remember what it was that I was seeing I just know either it was a memory or a past dream. Everything apears strange to me as if I'm in a dream. I also get deja vu and a weak feeling. Sometimes I get a pins and needles feeling all over and I feel a little nauseous. When I get the blood taste in my mouth I start either drooling or I will start spitting. I'm somewhat concious of what I'm doing, but its like I don't care. When its all over and I see that either I'm drooling on myself or I'm spitting in the floor I feel really embarrassed, but at the time of the spell it makes perfect sense to spit on the floor. I also have very strong emotions. Its like a fear/panic/depression feeling. Sometimes the emotions are so strong it brings tears to my eyes. I mainly get these spells around the time of my period or when I'm ovulating. I will have several in a day for a couple of days and then nothing for two or three weeks and then it starts all over again. I have problems with my memory after having these spells and then the longer I go without having them my memory starts to improve until I have another one, then I'm right back where I started. It took me having these for nine months before I finally told my doctor. He did a blood test, CT scan, and an EEG. They were all normal so he referred me to a neurologist. The neurologist did a sleep deprived EEG. It was also normal. I didn't really like that doctor so I had my primary care doctor refer me to a neurologist who specializes in seizure disorders. He did a MRI which was normal, so he put me on Trilepital. After three weeks I broke out in rash so that med was discontinued and I started on Keppra. Since taking Keppra I have had no seizures and I finally am starting to feel like my old self again. My new doctor did a ambulatory EEG because he said a lot of times the other EEG's don't last long enough to catch abnormal brain waves. It also came back normal which really surprised my doctor. He said that the medication must be working good for me thats why the test was normal.I feel like I'm going crazy. At first I thought maybe this was all stress related which is why I waited so long to talk to my doctor about it, but if it was stress related the medication wouldn't be helping would it? I don't know what to do. I was thinking of going off my meds to see if the problem comes back. Can someone please help me?

Comments

Thank you for describing

Submitted by KennyII on Thu, 2019-01-24 - 20:27
Thank you for describing every symptom i have.   Even the blood taste. I thought it was more like the way dimes and nickels etc made my hand smell after being in it for a few minutes.  But I also agree to it being more of a blood taste now that you say that.   Thank you

Re: normal eegs....i feel like i'm going crazy

Submitted by Winston on Fri, 2006-10-13 - 08:53
Wow! I started reading this and wondered if I had written this myself and then forgotten about it. Don't worry, you're not crazy. Or at least if you are, we both are. :-) Except for some minor details, this pretty much decribes my situation exactly! I also thought it may be panic attacks simply because I didn't know what else to think. I've also done a lot of work with DD adults, have a sister with a history of seizures, as well as friends, but I never knew about TLE until something bigger happened (either lost or impaired consciesness?), which led me to a neuro. My first EEG came back clear but my doctor said that it is not unusual at all for this to happen. He said it's not unusual at all for this to happen many many times. He described it as saying just because you go fishing and don't catch any fish, it doesn't mean that there aren't any fish in the lake. You just didn't catch them that time! It finally showed up for me on the 24 hour EEG and I pretty much induced it myself watching video games which I knew would make me really sick and nauseous. I wouldn't go off your meds just because it didn't show up on the EEG. Maybe for that 24 hours, nothing showed up. I'm certainly not a doctor by any means but the way my neuro described it to me, that would not be anything really unusual. If you are feeling better on your meds, why stop? Our seizures sound almost identical (of course except for minor details) and I know that they can be scary and at the least, inconvinient! I have also had a rash from a different medication - yuck. I've tried several different meds now and haven't found the right one or combination yet. If the one you are on seems to be doing the trick, go for it. I've been trying for probably 1.5 years now to find something and my brain still isn't cooperating. Good luck and no, you're not crazy. But yes, I've asked myself that same question many times too so I understand. Please let me know if you'd like to talk anymore.

Re: Re: normal eegs....i feel like i'm going crazy

Submitted by Peaches78 on Fri, 2006-10-13 - 13:48
Thanks for replying. I feel better knowing its not just me. The doctor I see now is a very good doctor. The last EEG I did was a 48 hour one. I was afraid if it came back normal he would tell me I didn't have seizures and I was doing it to myself like so many people on here have heard. He was surprised it was normal, but said it was good and it meant the meds were working. I told him I had experienced the weird sensation some around my period last month but I never had an actual seizure. He had been giving me Lamicatal also to counter act the side effects of Keppra so he upped that med. He said I probably am at the lowest dose possible to keep me from having a seizure so I needed to go up a little to stop the weird feelings. I don't know why this is happening to me. I have no family history of seizures and have never had an infection like menegitis. I hit my head pretty bad when I was about ten years old but never passed out or anything. My doctor said it is possible that could have caused it even though that was eighteen years ago. I hate having to take medicine. I have never liked taking any kind of medicine not even painkillers. I guess thats why I wanted to stop just to see what would happen, but then I'm scared to because I don't want it to get worse. So far I've never had convulsions and it hasn't really disrupted my life much other than causing me stress because I don't understand it. Sometimes I find myself wishing it would happen because it is such a different sensation, but then when it does it scares me because of the strong emotions. If I didn't have the strong emotions I probably wouldn't have even bothered going to the doctor. I guess I should consider myself lucky its not as severe as a lot of the people on here. I'm still able to drive and work. Hopefully that won't change.

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