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Old 08-22-2009, 10:40 PM   #1
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Unhappy History of Abnormal EEG and Feeling Spaced Out Now

My story is complicated,but I'll try to make it simple & short.

At age 19 I fell and hit my head...I would get dizzy and feel like I was in an elevator that was falling fast.My EEG showed my brain waves were going too fast...so the dr. put me on dilantin for 3 months and it corrected the problem...but I still to this day have the buzzing sound in my head,but not as bad as it was.

Several years later I had to go on klonopin for a few months due to stress and health issues.

A couple years after that I started having episodes where I would get an aura(looked like a misty fog)then I would see flashing streams of light for about a half hour.

I went to a neuro,had an EEG and it showed bi-temporal slowing more so on the left.It was so weird,because certain things would set it off...like if there were lines on the tv or some lights would set it off too and even some music.The neuro suggested tegretol,but I went for a second opinion and that neuro said that a migraine diet would help me.Well it did help,but I still was getting the episodes,but not as much.

My second EEG was abnormal also.It showed the persence of paroxysmal appearing transients of predominantly left temporal origin.During the waking state several left frontal temporal theta range transients seen with sometime associated sharp forms and sharp wave-like discharges also reflected in anterior temporal leads....

So I was given no meds...I just did my best to get through all of that.It lasted for 3 years....then I was fine....it just went away.I was good for another 3 years and then it came back,but not as bad and as often.Then T would have an episode off and on for the next few years.

I haven't had a spell for almost 2 years now.I had an EEG in Nov.'06 and it was normal,but I had a spell in Nov.'07.

Sorry for the not so short thread...I just wanted to give some of my history here....so I can lead up to what's going on now.

I have to also comment that I get B12 shots monthly,because I have an occult B12 deficiency(which means I have low-normal B12 with high MMA).

So my neuro dx me in early 2007 with "sensory disturbance"...it's likewhen there's noisy traffic and it quiets down it makes me feel confused or when music stops playing.

A few weeks ago I was just walking downthe stairs in my house and suddenly I felt so funny in my head...like the whole room was closing in on me,but then after a few minutes I was fine...I didn'tpanic or anything...it was just a weird incident.Then about a week & a half ago I woke up one day and felt really spaced out;like I lost part of my memory.I will be okay and then I feel like I lost time.This is really freaking me out.I went to my regular dr. and he was really concerned.They did a mess of blood labs,but all looks okay.

I get an overwhelming weakness through my whole body and it feels like I'm gong to have a convulsion and then I feel so spaced-out.

I have to find a new neuro,because I moved and he's too far away now.I'm feeling a little frightened now,because I just can't seem to figure out how I got this way....again.

What I am wondering is if anyone can relate to the spaced-out feeling I'm having off and on.

I know I need to have a current EEG test...and I hope it will show something,because I just don't feel right.Also the whites of my eyes are very blue....which the dr. said is usually fro a brain or heart problem.

I am feeling really so down.....not nervous at all,but just really low.

thanx much~Scout

 
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Old 08-24-2009, 05:45 PM   #2
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Re: History of Abnormal EEG and Feeling Spaced Out Now

Your case seems very complicated. Have you ever had an MRI? That would show the doctors even more about what's going on in your head. How old are you? Some of this almost sounds like vertigo. You've been on some strong meds. Try to get a neuro-endocrinologist if you can. Some of this is because of a head injury but you never know if you might have some other issues within your bodies endocrine system. It's hard to comment on your case. Maybe someone else out there can relate.

 
Old 08-25-2009, 12:19 PM   #3
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Re: History of Abnormal EEG and Feeling Spaced Out Now

thank you 92261

I had an MRI in Dec.'06.....it showd a slight tonsillar ectopia in the cerebellum(not consistent with a Chiari I Malformation).University neuros said my sx then were from low B12.

I am 2yrs.post-menopausal now.So I strongly think my sx stem from hormone fluctuations.I thought I was clear of all my sx....so much for that~

I feel better today....hardly any brain fog,but I'm still going to see my dr. this thursday.

thanx again~Scout

 
Old 08-25-2009, 05:33 PM   #4
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Re: History of Abnormal EEG and Feeling Spaced Out Now

Scout316: Now that you say you're postmenopausal the hormone issue is probably a big contributor here. The endocrinologist can check your hormones and possibly get you some HRT/progesterone to help calm you down. It's amazing how important they are to brain function. They can definitely cause problems with memory and seizure issues. I take a B12 stress formula and magnesium which helps some. I have said this on other posts, which you can read if you can find them, I would also ask the doctor to have your neurotransmitters tested and toxic/non-toxic elements (like lead, magnesium, selenium, etc.) tested. The toxic element test is a hair analysis where you get your hair cut and send it off to be analized. I found out from the neurotransmitter test that I was low in Taurine and some other things that tie in with the way the brain works. I also found out that I was Estrogen Dominant because I'm having non-ovulatory cycles and not making the progesterone to calm me down. This is the catamenial epilepsy. I'm not a doctor and I knew it had something to do with my cycle. Now they believe me. I'm in the process of getting the ovaries shut down all together to reduce the estrogen in the brain to see if it will stop the seizures. Meds don't do anything for me except cost me money. I was given a RX for Klonopin but found out it was highly addictive so I never filled it. I'm bothered by fluorescent lights, MSG, loud noises, smells, EMF's, talking on the phone too much, and the moon cycles to name a few. I can't drive now because I had a seizure while driving and crashed my car and my license is suspended until I'm 6 mo. seizure free. I'm stuck in a place where there's no public transportation either. I was told back in 2006 that I have a scar on the right side of my brain and that could be contributing to the seizures. Who knows where it came from. I could have had it from birth. I can't recall any major incidents in my life that could have caused it.
One other thing that you might consider is whether or not you might be having some hypoglycemia symptoms. Menopause can cause this too. Have you ever had your sugars checked? This Keppra medicine that I take has the same side-effects as low blood sugar! Go figure. I guess this is why they call it the "Change of Life"! I'm told that this will all go away for me once menopause is over. It could be 10-15 years for me! Yikes! Stay in touch and let me know how things go with your new doctor.

 
Old 08-28-2009, 07:32 AM   #5
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Re: History of Abnormal EEG and Feeling Spaced Out Now

hi 92261

I can really relate to everything you said.I've known all along my cycle was the culprit.

Well I saw my dr. yesterday and he agrees that I need to see an endocrinologist and also I need to get a current EEG....so much fun...I can hardly wait!!!!

I went on a migraine diet that my old neuro gave me in 1999...of course MSG,peanut butter,yeast,lunch meats(nitrates),hot dogs,whole milk....all are no-nos...it helped me some and after trial and error I knewwhich ones caused the simple sensory seizures.Then of course there's all the other food that seems to aggravate hot flashes....it's soooo frustrating...I love food,but I do miss all the stuff I can't have.

Have a ton of things to do so I'll post back this evening...thank you so very much for helping me.....I am here for you too!

Scout

 
Old 08-28-2009, 07:34 PM   #6
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Re: History of Abnormal EEG and Feeling Spaced Out Now

hello again 92261

What kind of seizures did you have?Did the drs. give you a firm dx for them...like simple sensory or focal????Just wondering.Were you aware of them while they were happening or unconscience?Sorry to ask so many questions.

I've heard and read how hormones can do mess up your brain(along with just about everything else....heart,digestive system,cns,etc.)...this is a real nightmare for me.It was 2 yrs. in June I've been period free,but it still isn't over...I finally got my B12 to a decent level,but now I feel so spaced out sometimes...then I'll have a mild hot flash and actually feel better....figure that one out.

Mostly I try to keep busy and then rest when I know I need to,but I know I'll at least have peace of mind when I get some answers.I am trying to find a new neuro,but the good ones are so far away...I guess I'll just see the one that can fit me in the soonest.I'm having a hard time finding an endocrinologist too...I hope by monday I'll find one and that I won't have to wait long to be seen......I hate this....I have gone through ten years of perimenopause and now I still have all this stuff to endure.....

I was dx with hypoglycemia in 1975,but since my lovely change of life I've had bouts of hyperglycemia......I just feel like I'm in a boat without any oars...just stuck out in the ocean....I have really cried me a river so many times...it just has to get better someday.

Anyways I'm so glad I'm not the only one going through this,because then I'd really feel lost for sure.

Did you have an EEG to dx your seizure pattern?My dr. called mine "spells",because it was not clearly a seizure pattern......but then again I was'nt having an episode during the test.......so frustrating.

Thanks again~
Scout

 
Old 08-29-2009, 08:34 AM   #7
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Re: History of Abnormal EEG and Feeling Spaced Out Now

Hi Scout316: My seizures were diagnosed as partial complex seizures. It's really called Catamenial Epilepsy. Look it up. The seizures come right before, during and after the period. I had an EEG where they hooked me up with a monitor and sent me home and collected data and they did see seizure activity. I've had MRI's and now I know the next time I have one that they will NEVER inject dye into my arm! It's called gadolinium. It's a dye that enhances the images on the MRI for the technicians reviewing the MRI. It's poison! I had a hair analysis done and it showed up in my hair as being a toxic element in me. I've had my neurotransmitters tested which showed that I was low in Taurine & Serotonin and high in Glutamate (MSG), Beta PEA (phenylethylamine), and Glutamine. The test also measured a list of other things that came back normal. These tests were done by a doctor that is on the more holistic end of things because my other doctors "Don't know how to interpret these tests"!!!!! That's because they're not taught anything other than prescribing pills! I also had a test called a Bio-Terrain test and that showed that my Mitochondria (cells) were out of whack. I've tried to take supplements to improve these areas that are out of sync and I end up with worse seizures because they interfere with the Keppra and Phenobarbital! If I don't take the seizure meds then I'm in trouble with withdrawls. When I have a seizure I have no warning. I only know I've had a seizure because I've lost my memory and I've either spilled drinks on myself or see my water bottle crushed. My body spasms somehow. My husband has witnessed them and even though I'm "out of my mind" I still continue to talk and converse like nothing is happening, but then I can't remember the conversation. I've been having them more in my sleep these days too. Every time I have a seizure I lose brain cells and my short term memory. The seizures only last less than a minute but it's enough time for me to do something crazy - like crash my car. I have a picture of myself with a bitten lower lip that I woke up with one morning. I tend to draw my lower lip in and bite down - HARD. I can feel the teeth marks inside the lower lip. I also have TMJ which doesn't help matters. The meds have never worked and it's because it's hormonal. I need hormones not seizures meds. I also have high cholesterol now and I wonder if it's because of these meds. I've gained weight which doesn't help matters either. I told my PCP that I'm not taking statins. I don't want the drugs. I want less of them. I'd rather take my chances and have a seizure then to be on these crazy things. A friend of mine told me she was on 22 pills a day to try to get her seizures under control. She was a walking zombie!! She sees the same endocrinologist that I do and she's over 50 now and has stopped having the seizures. Alot of this is environmental with all the toxins we live with. Plastics are a big culprit, cigarettes, exhaust fumes, chemicals in and on our food, hormones in meat, the list goes on. When our bodies aren't making progesterone - the calming hormone - it upsets everything in our brains. I've never had a hot flash I've only had these seizures. I'm always cold which is one of the symptoms on the list of estrogen dominance. I've got 14 out of 40 of the symptoms. I'm hoping these Lupron injections do something for me and reduce the estrogen in the brain because I'm going to really lose my mind if it doesn't work. I feel like I'm in jail. Read some of my other posts on the board about the HRT treatments. Sorry to be so long. I probably repeated some of the things I last posted.

 
Old 08-29-2009, 10:48 AM   #8
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Re: History of Abnormal EEG and Feeling Spaced Out Now

hi 9

Well I hear you loud and clear.....I feel the same way......the smells,noises,lights and all those preservatives and additives in food....not good....I'm thinking it's all part of the problems we are having with peri/meno........I know that "migraine diet" the neuro gave me in 1999 was smart because I tried eatting lunch meat(pickle loaf)from the deli and it brought a "seizure spell" on.so weird,but another neuro said that diet only works in 20%of the patients...but it does help me.I was able to go off that diet for awile(during that time I ate all the no-nos:chocolate,hot dogs,peanut butter...it was great but then it all started coming back...the spaced out feeling,flashing lights...yuck!

What Iexperience now is a short term memory loss I guess,because my long term memory is just fine,but I'll be doing something and then I feel like I lost a few minutes....it isfreaky for sure!I'm looking forward to having an EEG again....so hopefully something shows up.I also have severe sinus problems...so I'm a mess...hahaha.

Well wouldn't it be better if they gave you progesterone instead of those potent antiepileptics?I hate synthetic hormones..I never took them and don't ever want to,but they say the biodenticals just prolong the natural course of menopause and when you stop taking them....bam!you're back where you started....forget that I say.

I noticed before I get a spell where I feel "disoriented"I feel like the skin above my upper lips feels funny(warm and tingly)and my lips get super dry where I have to keep licking them...now isn't that weird?After a fw minutes I feel okay,but it's like I lost a few minutes of time...so I bet I'm having some kind of seizure.

Thank you for sharing about yourself with me....you'bve helped me so much~talk later~

Scout

 
Old 08-29-2009, 06:18 PM   #9
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Re: History of Abnormal EEG and Feeling Spaced Out Now

Scout: I tried using some progesterone cream but I ended up with more seizures because it's conflicting with the Phenobarbital and the GABA receptors in the brain. I asked the endocrinologist about getting on the HRT and getting off the meds and he tells me it's going to be tough to get off of the meds without having more seizures. Who cares at this point - I'm having them anyway!!! I need to wait and see what's going to happen with the Lupron injections. I'm finding out now too that this Keppra is the culprit to my high cholesterol. Now I have another battle to fight! I'm going to call the company that makes the stuff and see what they have to say about it.

 
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