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Newly Diagnosed and Trying to Process
Epilepsy & Seizures | Last Active: Nov 14, 2017 | Replies (31)Comment receiving replies
Hi Mica I am Knielle I am a 43 year old that since July has been diagnosed with epileptic seizures which I have never had before. Back in December my dad passed away and in February my big sis died at the age of 44 from breast and bone cancer. I have a history of FSGS which is scarring of the kidneys which I have been dealing with since 2006 and I've been doing pretty well. I am just so overwhelmed. I guess that you can say that I might have been having some symptoms i guess i don't know. I know that for a couple of months I have been getting tingling, numbness in my face and my lips but it didn't happen everyday. Then one day to work my face started twitching but no one could see it, then it went to me smiling like i had botox done by the time I left work that evening my spasms got severly worse now my whole face was twitching, lips fluttering and by the time i almost reached home my eyes were fluttering uncontrolably and I also started stuttering which i have never done before. I had a friend drive me to the ER and they are asking me if i had a stroke..lol... eyes still fluttering, speech crazy still stuttering. When the doctor finally came in they said that there is nothing that they can do for me and referred me to a neurologist. I went the neurologist put me on meds and bed rest he said it was stress related. Did EEG that didn't show anything, symptoms continued went back to the ER I got chewed out and told that it wasn't seizures. Went back to the doctor he did another EEG it sill didn't show anything but i kept complaining so he did a 24 hour sleep EEG which in fact did show some activity on my right frontal lobe. He put me on more meds, bed rest, no driving, no swimming by myself etc.... I really don't get the oras I get a funny feeling in my head right before my symptoms also I get these weird back pain but once im in the sun, sunlight, bright light my facial apasms go crazy to the point that my lips start going crazy then i sometimes get the jerks or my head starts doing uncontrollable stuff. I have been home since the middle of July and I haven't veen back to work. I am afraid that I will not be able to work again especially since I work in the clinic as a CNA, my family is scared to leave me alone and I'm tired of not knowing what is causing the seizures. Was supposed to have somemore testing but since the two cat 5 hurricanes i haven't been able to get anything else done. I am so confused, stressed and don't know what to expect. Also confused and now it seems that my arm and legs nerve are shot so I am also having issues with that...
Replies to "Hi Mica I am Knielle I am a 43 year old that since July has been..."
Hello Knielle,
Sounds like your plate is full!! I to have had very similar symptoms in the past. Also have had 27 different EEG’s but not sure if your doctors explained an EEG is only as good as the very moment they are testing. It’s a snap shot in time when determining seizures. Not to dismiss their importantance because they are vital testing in showing long term effects or any changes as a result. If you are not having symptoms at that time it may not show anything or if they were mild enough to not cause damage. Curious if they have ever mentioned doing a sleep study? From my experience that was the next test they performed when my EEG where inconclusive. Maybe talk to your medical team to see if they think that would be reasonable,
Good luck
Dawn
Hi Dawn I did two sleep test tge first one should that on the right frontal lobe was having seizure activity which controls the left side of my body. The other sleep test didn't show up anything. I'm just tired of getting half answers and not knowing the full effect of everything. After the sleep test they made me do another sleep study because the sleep test showed some sleep apnea, but since the two hurricanes I still don't have electricity so what he is recommending I can't do which is sleep with a mask and machine. But now I've been diagnosed with nerve damage in my legs it just keep getting better and better....
Actually Dawn no one ever told me that the EEG might not show anything. I work as a CNA and I have a sister that is an RN and I've been talking to her and she was the one that tod me that not everything shows up on the EEG. Also she and another person that I recently met did tell me about keeping a journal. But I've noticed that light, whether it is the sun light, flashlight, car light it triggers my facial spasms a lot, when I get the funny feelings in my head U tend to groan, and my upper back hurts for awhile afterwards.
Wow, @specialkt you sure are dealing with a lot - and still without electricity. When you are in a position to be able to try sleeping with mask and machine, you might be interested in reading other people's tips in the Sleep Health group on Connect: https://connect.mayoclinic.org/group/sleep-health/
Good luck with keeping a journal. It sounds like you're already discovering triggers. What cause the nerve damage in your legs?
Connect
Welcome to Connect, @specialkt. That's quite an episode that you had in July. It sounds like you are still on the journey of figuring out the diagnosis and how to treat it. Have you been to an seizure clinic or a center that specializes in seizure monitoring and diagnosing?