The Memory Workshop & my psych appointment

[Trinity]

Well yesterday I attended the Sydney memory workshop with Epilepsy Action - it was really great. I learned some interesting things and got lots of information to bring home. One thing that I found interesting was that the Epilepsy Nurse Educator who ran the day asked if any of us had trouble with hearing. I explained that sometimes when people talk to me I don't hear them properly at first and then if I wait I will understand, like it's taking a while for the message to be understood by my brain. I also explained that I have been tested in the past for hearing loss and apparently I have no issue with my hearing itself. The nurse told me that the part of the brain that deals with that sort of thing is the temporal lobe and so although I have never been diagnosed with epilepsy specific to any particular lobe she said it's possible my temporal lobe is effected more than they (my doctors) know. I talked to her more about simple partial seizures and explained the tingling and numbness and asked if SPS were common with temporal lobe epilepsy - she said definitely and encouraged me to keep a record of everything and if there is anything that can be caught on camera then to do so. We were all given seizure diaries to take home with us which is awesome.
I do have my psychiatrist appointment on Friday though as my neurologist did question whether the tingling etc was perhaps anxiety (he didn't say it was but I figure I may as well get that addressed and I may actually have the support of the psychiatrist to say 'no it's not that').

 

[Trinity]

Ugh! I am so frustrated. I was just at church and my best friend told me that she thought that my memory problems had nothing to do with Epilepsy because every mother and working woman she knows experiences the same problems. I told her that I would agree if I hadn't been having the same problems ever since I was a kid. I doubt that it is 'normal' to be in the middle of a conversation and forget what you are saying. Also, whilst not exactly a memory problem it was something brought up yesterday about how my brain seems to be delayed in translating hearing signals - another E problem???

 

[Nakamova]

Well the workshop sounds great! And the Epilepsy Nurse sounds very helpful too.

I'm sorry that your friend doesn't "get it" about your memory. Everyone gets distracted and forgets things from time to time, so when you say "memory problems" that's what most people think you're talking about. If only they could live inside your head for a day so they could understand.

I agree with what the nurse said about the audio processing/epilepsy connection. The auditory cortex -- the part of the brain that helps interpret the sounds you hear -- is located near the temporal lobe, so any damage to those areas could cause the delay you experience.

 

[Chel]

Sounds like that epilepsy nurse is really on the ball. I have very minor hearing loss in my right ear (have had it checked), but cannot understand anything said on that side, unless I can hear it via my left ear also. My neuro explained that is because of the T L damage.

Don't you love people who diminish your illness because "everyone goes through that"? They have no idea. Shrug them off; they have no empathy and it's not worth your energy to explain that what you are going through is different/permanent.

Even if a psych says the tingling is psychological, I would still mention it to a neuro. Unless you are hyperventilating, stress shouldn't usually induce numbness/tingling. Trapped nerves (caused by tension in neck shoulders) could cause tingling in your upper limbs, and problems in your lower back causes tingling in your legs/feet - but a GP can pick that up and send you for the appropriate tests.

I get tingling and especially complete numbness with my nocturnal seizures, and previously when my sps were uncontrolled.

Sounds like you had a great workshop. I'll have to get serious about joining our E Society and see what they offer.

 

[Trinity]

My neuro already knows about the tingling and said that although it could be small seizures he doesn't think they are. I have had EEG, CT, MRI, full blood workup and nerve conduction study. He did say though that if the tingling sensations were small seizures they would not show up on an EEG (my EEG showed generalised slowing which it usually does, but there were no spike patterns).