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roseycoe

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Hi everyone I am new to this forum and I hope that someone can help me. First off I have had complex partial seizures since I was six years old. I am now 36 and going through a pretty hard time so I thought joining this forum would help with some of the depression. I am not sure how these forums work I am not really computer oriented but I am excited to meet everyone and I am really hoping that someone can help me better understand this illness and all the complications that come with it. To be quite honest the new neurologist I have is not helping me very much so I thought that people who have this illness can better help me deal with it. I also have alot of questions to ask to see if anyone can relate to what I am going through right now. My first question is does anyone get a wet feeling at the top of their head right where it dips with tingling and a feeling like someone has hit them with a baseball bat right in that dip? Is this normal with epilepsy because this only started about a year and a half ago. I don't remember ever having it before that I always get instant headaches right after a seizure but nothing like this.
 
Hi roseycoe, welcome to CWE!

Depression and epilepsy are definitely linked, though the relationship between the two isn't entirely clear. What IS clear is that you should be able to talk to your neurologist to discuss if your anti-seizure medication may be contributing to your depression. And if you're not happy with your current neurologist, you should feel free to find another.

If your depression is not medication-related, there are other avenues to try: Exercise and talk therapy can go along way, and there's also the possibility that anti-depressants could help (though you need to proceed with caution there -- some anti-depressants can potentially increase seizures). Another route to consider is neurofeedback -- it may be able to help you with both your seizures and the depression. You can read more about that here: http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/

As far as your specific symptoms go -- I don't have partial seizures, though many CWE members do, and can chime in about them. Tingling sensations and headaches do seem to be fairly common in one form another.

I'm glad you've found us -- CWE is a great resource and the members are truly supportive and informed.

Best,
Nakamova
 
Hi Nakmova
Thank you so much for responding. You may be right about the depression being linked to my meds or I even thought it might be linked to the situation. Either way I am getting more and more frustrated by the day because these doctors are not listening to me. I have decided that as soon as I get my release to return to work from my current neurologist I am looking for a new one. I thank you so much for the Neurofeedback information I am going to look into this right now. And thanks so much for listening.
 
Hi roseycoe

I am new here myself and I think you picked a good place to come, people care,I have a good idea how you feel, you are a long time dealing with this problem like myself, I have had epilepsy since I was around 2 I am now over 40 (which I never though I would see) I am a bit depressed right now like you but nothing like I was 2 weeks ago, the help I got here has shown me the light at the end of the tunnel, but its not easy, the wet feeling you get, I do not get but the headachs yes I get,remember you are a long time fighting so do not stop now, a little rest might help you as well and yes I do believe you will pull through this.
 
Hi Fedup
I thank you for your support. I think doctors of today are relying too much on scientific technology which is not fool proof. I have heard so many stories about people who are told they have clean MRIs and then another doctor comes back with finding lesions on the brain. I think if they listened to people more this may not be such an ongoing problem. Everyone is different and if a person does not have seizure activity every minute or so or often enough to pick up on an mri they blow them off and tell them their seizures are not real. Well how in the heck do they think they found out about seizures to begin with. By symptoms and not technology. I think they forget that today and that is frustrating for the person with the seizures. My epilepsy psychologist believes me he thinks I even had characteristics of what might have been hypergraphia when I was not on medication. Now that I am on medication the hypergraphia isn't there anymore.
 
Hi Fedup
I thank you for your support. I think doctors of today are relying too much on scientific technology which is not fool proof. I have heard so many stories about people who are told they have clean MRIs and then another doctor comes back with finding lesions on the brain.

Yep yep yep. Over seven years had seven MRI's and other than an arachnoid cyst (which the neuro said was prob. there since I was born), they couldn't pick anything up. Then a new radiologist to the hospital (who I was SO lucky to get as she was only working a few weeks at a time), reported a possibility of MTS (mesial temporal sclerosis), which was confirmed by my epileptologist this year.
When I asked my EEG tech how she would find something the others didn't the answer was, "She likely just did a couple different slices than the others." Looked on my report and sure enough... thin slice coronal T2 and T1 IR of the temporal lobes.
Sigh. How long one waits before they get it right ey.
 
Hi qtowngirl
Boy I am begininng to think that I was actually lucky because up until I switched neurologists both of my other neurologists believed me. The bad thing is that this new neurologist I am seeing is an epileptologist so that is what makes it bad. I told them I thought I was sick somewhere else and that I did not know if it was seizure related. I am getting really bad spells of verigo and this new doctor said that seizures can come on as dizzy spells but I told him up front I had new heard of seizures lasting one to two hours before. Now that my blood work came back abnormal maybe now they will start listening to me. At least I hope they will.
 
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