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Do I need a new neurologist?

Mon, 08/14/2017 - 06:36
Hi Guys, so this is actually quite a long one! I first started having seizures when I was around 10/11, they began with absence seizures and gradually grew into grand mal seizures. I was officially diagnosed with epilepsy at the age of 15. After trying and failing with side effects with two different medications (topiramate and oxcarbazepine) I was referred to an adult neurologist who put me on Levetiracetam. At the end of 2015, my seizures had reduced slightly, my neurologist decided to combine the keppra with lamotrigine. Again, I suffered with side effects from this drug (my hair came out and my memory got progressively worse). In March 2016, I had a series of seizures and unfortunately have now also been diagnosed with retrograde amnesia due to this. I was taken off all medication immediately. Anyways, I have seen my neurologist 4 times since this happened. He has been so unhelpful, understandably to him, I get that he has not come across a case like mine in his time. He sent me to see a psychologist and psychiatrist who both discharged me after two appointments after concluding that there was nothing wrong with my mental health. Lat week, I visited my neurologist for a check up, I have had four major seizures (where paramedics came to my aid and had concussion) since my appointment in February and I suffer with absence seizures throughout every day. I was hoping the neurologist was going to trial a new medication. However, he has since decided that I don't have epilepsy he now believes they are non-epileptic attacks? I questioned this as I understand that non-epileptic attacks are when the brain disassociates itself, therefore how does this explain me ending up unconscious on the floor. I asked him how I am meant to prevent these attacks from happening and he said I should count down from 100 before its going to happen or imagine myself on a beach prior to feelin unwell. I explained to him I am unable to do this as I do not get a warning beforehand and he said that I should practice up to three times a day. My most recent EEG came back normal (I did not have any seizures during the time of recording) and I am scheduled in for one next year. I could really do with others advice/opinions as I have just been left continuing to have seizures and without a diagnosis? Thanks so much! x

Comments

yes, get a new doctor! 

Submitted by Amy Jo on Tue, 2017-08-15 - 01:25
yes, get a new doctor! 

When seizures are difficult

Submitted by jgretsch on Tue, 2017-08-15 - 12:41
When seizures are difficult to diagnose or do not respond to standard therapy, a neurologist who specializes in epilepsy, called an epileptologist, should be consulted. Also, an evaluation at a comprehensive epilepsy center can help you add an entire team of professionals to your care team. This evaluation usually begins with Video EEG monitoring to record the seizures. This testing can confirm the diagnosis of epilepsy, the type of epilepsy and seizures, and where the seizures start in the brain. Other tests may be ordered too.Learn more about comprehensive epilepsy centers at https://www.epilepsy.com/learn/refractory-epilepsy/comprehensive-epilepsy-centerFind a specialist and epilepsy center at https://www.epilepsy.com/get-help/find-epilepsy-specialistCall our 24/7 helpline at 800-332-1000 for more information.

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