please help after a year and a half
 

hello everyone - ive been struggling with odd symptoms for a year and a half and have just started developing another scary symptom which to me feels like it could be seizure related.
for the last year and a half i have been having waves that go through my head, shocks in my head, shocks that go through my ears, hearing fluctuations, ringing in the ears, waves that feel like chemical changes going through that disorient me and just odd feelings in head in general. I have seen multiple neurologists, had mri, eeg, mra, emg, and been through the gamut of psychological drugs since they all say its psychological - nothing is helping.
the past few weeks including this morning something else has started happening - it will be around 6 am and trying to dose back off to sleep and i will suddenly while half asleep (going into sleep) get electic shocks all over my body, a loud pulsing noise getting louder and louder in my head and the feeling like i have to fight to get out of this state. It is really scary and is freaking me out. Does this sound like seizure activity? Also, yesterday i had the same sort of thing but i was dreaming i was passing out and actually felt the dizziness after i woke. Does anyone have any help or similar experience?

Hi willowgirl,

Welcome to the forum. I've had epilepsy for 43 yrs. and it sounds like you
are having a lot of electrical activity going on in your brain. If I may ask do you ever see colors in your eyes or notice an odd smell like deviled eggs, natural gas, or a burnt odour? If you do have any of these problems you may be having a simple partial seizure also called an "aura" seizure.
Over the yrs. I have found that the best thing to do is to see an Epileptologist which is a Dr. that specializes in epilepsy, these Drs. know how to treat epilepsy and can find the cause of it much better than any neurologist I've ever seen. I also found that eating to many carbs and starch foods triggered seizures for me.
If you haven't started keeping track of these problems get a calendar and write down what time it happens along with a description of the possible seizure then when you see the Dr. this may help the Dr. see a pattern as to what time of day/night this is happening and they can treat you better. Try taking vitamin B12 1000 mcg. once a day it worked great keep my nerves calm and it reduced my seizures a lot. I wish you the best of luck and May God Bless You!
Sue

Nice to meet you!!
 

:Wave-Hello: Hello and welcome, happy to see you have come to be with us, it a great place to be. We have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:

Darlene :hug:

Thank you for writing me back - during the times at night i've had things happen like flashing lights similar to fireworks going off in my eyes which is rather scary and at night when i close my eyes i see light flickering once in a while - not color problems or smells.... when i was young I had some odd things going on (I am 32 now) like everything around me would start moving really quickly and sounds and noises would sound like things were in fast motion and then when i was leaving a summer camp once in my teenage years (after a sleepless night) I had this bizarre thing happen to me where I was at a rest stop and suddenly everything was like tunnel vision and too bright for me and i wandered around barely knowing what i was doing and ended up at a fruit stand ( I know sounds weird lol ) which i would have never gone to if i was "with it".... This lasted for about 10 minutes til my dad found me and asked what I was doing - it was a very odd experience I have not had since but I still think back on these things and wonder if I always had a tendency for these things... thanks for the supplement info - I am just very scared these things are getting worse and happening more often and to a more powerful extent. Its all throughout my days from the time I wake up til i go to sleep... I just dont know what to do....?

porkette, i wrote back i hope my reply gets posted - i hope nothing went wrong

i hope my message is posted correctly ? It hasn't shown up yet?

Hello, New member posts need to be approved, so at times there may be a short delay before they show on the forum.

Hi Willowgirl,

Your posting went through just fine. What you are describing sounds a lot like the beginning of a simple partial seizures also known as a aura seizure and they can sometimes lead into a full type of seizure. This often happens to me right before I have a complex partial sz. Often I will hear one word repeated over and over again but nobody is saying anything, and I will be sitting in my own living room but nothing looks the same and I'm not sure where I am for a few seconds. If you have any family around ask them if they see you get up and just start wandering around your home, smacking your lips or maybe pulling at your clothes this also can happen during a complex partial sz.
You are at the age where the hormones could be playing a lot of the problem. Many times right before and after a women's monthly cycle or if a woman is starting premenopause or menopause this can trigger sz. because the estrogen level is getting higher which causes more excitement in the body while at the same time the progesterone level is dropping and progesterone helps calm the nerves. Try taking vitamin B12 1000 mcg. once a day and see if that helps. I wish you only the best of luck and May God Bless You!

Sue

Thanks for your reply - i went to the cleveland clinic yesterday and met with a epileptologist. I had a quick eeg done - nothing found there but didnt have an episode during it. The epi listened to all my symptoms and says could be simple partial and some could be migraine variant - wants T3 MRI done of my brain and supposed to go to video unit in three weeks. In the meantime he wants me to start 100 mg of zonegran which im scared to take - does anyone have any familiarity with this drug? thanks so much

HI Willowgirl,

The Cleveland Clinic is a great place to go you are lucky you can get there.
I've taken zonegran in the past but it didn't help me at all but that's because my Dr. found I was drug resistant.
Years ago when I was a kid I started having migraines and that in turn lead to my epilepsy so you are playing it smart going to have the MRI and the video e.e.g. I wish you the best of luck and May God Bless You!

Sue