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Feel like a fraud

Mon, 04/09/2018 - 11:09
I've had epilepsy since December 2015. My first seizure was one where I lost consciousness...at the gym with a friend...lost bladder control. It was humiliating. It looked like I just passed out, but she noticed that ever so slightly my head shook. I could tell it was different that a fainting episode because everything was white and felt like a dream instead of blacking out and waking up with no memory of it. Then a week later I zoned out and when I "came to" I had an intense sense of dread that I could explain. Went to my PCP and he sent me for an MRI and referred me to a neurologist. MRI was normal and neuro put me on Lamotrigine. That was working fine until my sleep study. That neuro said my dosage should be higher based on my blood levels. So he gave me the dosage increase schedule. When I increased it I started to have suicidal thoughts. A trip to the ER and two hours later - we decreased the dosage. Back to feeling normal with no seizures. That lasted about a year. Then I started having zoning out events...and flushing of my neck/face and memory issues. Had a one hour EEG - showed "abnormal" activity on the frontal temporal lobe. My seizures are apparently simple partial seizures located there. So it's all happening internally and I look totally fine and normal on the outside. I had another one 2/13 and then one 3/29. So they're happening again. :( I'm on driving restriction (90 days with no events in KY). I have a traveling husband and 2 young kids. Life is very hard right now. We added Vimpat to my regimen and I have an appointment for a second opinion at a different epilepsy center. My doctor didn't seem to be reading my chart before suggesting plans of action....so I lost some faith in their care. Anyway - I feel like a fraud because A) my seizures aren't nearly as intense/frequent as many of yours and B) no one can see mine happening so I just feel crazy. I'm feeling very down right now because the driving restriction is forcing me to be dependent on others and is messing with my kids' lives...but I have no other choice. So that's me. Sorry that was long. I'm hoping to learn a lot here.

Comments

You feel like a "fraud".  I

Submitted by birdman on Mon, 2018-04-09 - 20:39
You feel like a "fraud".  I've noted that I must look pretty foolish as I live a double life.  I've had epilepsy all my life. When I was a teen they were much worse with the generalized seizures happening once or twice a month.  Everyone who knew me for a while was aware of these events.Today I still have complex partial seizures as well as the simple partials.  I've learned to cope and go on despite the seizures.  I do a lot of dangerous work that my doctor restricts and I participate in choir so it appears that seizures are not a major factor.  I know my seizures; they develop slowly and I've always had time to move to safety before I lose my awareness.  And for myself living a quality life is at least as important as my safety.I have to wonder what these people think when they find out that I collect Social Security Disability Income because of my epilepsy.  They don't know the failures I've had trying to keep jobs.  And many do not know the severe emotional problems that go with my condition.  And now people (many who have only known me for the past 15 years) are learning that I am talking to a doctor about another brain surgery.  I bet I leave them confused as to how significant my condition really is.  Maybe when they see my 81 year old mom doing all the driving of this son who is over 50 they take it a little more seriously.  Occasionally I speak with people who seem willing to listen to the details of what I've been through and the impact that infrequent seizures continue to have.  What I have been telling these people is that about 70% of people with epilepsy get control with medication, while another 25-30% of people with epilepsy have "refractory" seizures which will be unlikely to ever be fully controlled by any medication.  It's that unpredictable and uncontrollable nature that makes our seizures significant.  If you had a wall outlet that puts small sparks out only once a year who would argue that it is an insignificant concern?  I'm sorry about the great inconvenience this causes for you and your family.  I hope you use the experience to educate others that epilepsy is more than just a seizures disorder. 

So this all started Dec. 2015

Submitted by just_joe on Tue, 2018-04-10 - 12:18
So this all started Dec. 2015.Your PCP sent you to a neurologist after you had an MRI which was normal. OK your brain LOOKS like everybody elses which is good. No tumors or growths. No scar tissue.The neurologist prescribed medication. It was raised because the levels were low to what the chart and neuro think they should be. Each person has a tolerance level for everything. If your bodies tolerance level is higher then other peoples then the medication does not need to be high as the charts.. It was reduced and you went back to normal. That addition of vimpat needs to be looked at since it takes time for it to get to the therapeutic levels. I take it along with keppra. The addition of vimpat shortened the time in my seizures and the (post ictal) time (the time to  get back to normalYou had an EEG which showed abnormalities in the frontal temporal lobe. You post that you have simple partial seizures. But research more simple partial seizures can change into all the other partial seizures and can generalize covering the entire brain. Meaning you could have other seizures.Everything is happening internally and you are fine on the outside. Well to a degree yes and no. Everything happening to you and I mean EVERYTHING goes through your brain. Do people with diabetes look different? What about people with hearing loss? Or a person with a heart condition? They are normal just like you. They happen to have a blind disease. You had another seizure on 3/13 and 3/29. Have you medications been changed since they were reduced? Have you taken any other medications including over the counter medications? All of your doctors need to know all the different medications you take including over the counter meds. One medication can counter another. Also If all of this has happened this year then you need to understand that it takes 3-4 weeks for medications to get to the therapeutic levels in your body, Which means the last reduction if done last month then it may be out of your system the middle of this month or about a week or two later. Too much medication is just as bad as too little medication. It is like walking on a high wire rope in getting to the right medication and right dosage. I know I have only been working at this issue for 55 years now. I will never be completely seizure free since I have scar tissue in the left lobes of my brain. But by asking questions and working with my neurologists today I can have a seizure right in front of you and you would know nothing about it. My PCP didn't know I had one when I was answering his question.no one can see mine happening so I just feel crazy  << Oh but they can and have seen some of yours.. >My first seizure was one where I lost consciousness...at the gym with a friend...lost bladder control.  Just because you haven't had these since way back then does not mean you can't have them again. Been there done that. But working with your neurologist will help and letting them know about your seizures and when you have them can help you get control of your epilepsy and seizures. Rather then letting Epilepsy and your seizures control you. You talk about your not driving. Well I have never driven and I am a senior citizen. It just takes a little more time and planning.You an have your second opinion if you want but if they see the EEG the diagnosis might be exactly the same and the medications might be the same.I hope this helpsJoe

I have a 18 year old son and

Submitted by johnlp on Fri, 2018-04-13 - 10:28
I have a 18 year old son and a 13 year old daughter. My son drives me where I need to go half the time. I got epilepsy at 33-34 I am now 36. The last time i drove knowing I should not !! I all most killed myself. Know whats worse than not driving ??? watching your wife and kids cry for hours behind something you knew and they knew you should not have done just me anyway. It is rough I'm on 3 meds. including vimpat. They check blood to see the levels of meds. in my system. Mine have never been under control i have tried at least 8 meds. We just found whats the cause of mine a few months ago. Turns out I'm lucky to have made it as long as I did with no seizures. When I,m looked at nobody see epilepsy they see tattoos and earrings.If you don't have it, it is hard to understand uh the seizures are the easy part. Its hard to be strong at least it is for me , when i get down I think of my wife and my kids. I also zone out when I have seizure , then when I do start talking no telling what I,m say.

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