I am so tired

[spoogie712]

I have been taking lamotrigine now for 2 months gradually titrating the dose. It hasn't made any noticeable difference to my symptoms only giving me wierd dreams and broken sleep. Spoke to my neuro earlier this week he says if meds didn't work then my symptoms can't be related to seizure activity! I haven't had an EEG tho so don't know how he can tell this. I have had 2 MRI scans which have both been reported raising the possibility of a ganglioglioma. According to my research about 90% of these present with seizure activity often resistant to antiepileptics. He seems to refuse to consider this as a diagnosis and all he can offer as a differential diagnosis is peripheral neuropathy (I have had normal EMG and NCS) or migraine (I don't suffer from headaches)! Perhaps I'm jumping to conclusions but isn't it worth considering? He also suggested I add in another antiepileptic topirimate but I'm not keen to do this without a diagnosis. I've decided to come off the lamotrigine anyway cos I can't cope with the lack of sleep.
I'm waiting to see another neuro at a big teaching hospital, hoping that I will be taken seriously and get some answers but unfortunately it looks like there's a 3 month wait on the NHS.
Spoogie xx

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bump

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Ah, the stress *thing*... whatever... keep us updated.

[spoogie712]

Saw the new neuro yesterday who thank goodness seemed to listen to me. He said my symptoms didn't sound typical of temporal lobe seizures but is going to refer me for an EEG. He didn't seem to think the sensory symptoms are that significant and mentioned poss restless legs waking me at night. I was a bit worried at the end when he said he had seen people like me before who were simply overworking! I don't want to end up with a psychological label. Hey ho the waiting goes on! Spoogie x

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Let us know how it goes!

[spoogie712]

I can't believe the appt with new neuro has come through already fir this thurs!

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I don't know - it seems to me, but I am a layman, that just because one medication does not work, usually one tries another class. My doc tried me on scads of meds when one did not work, not said I was not sick...so I find it strange he blames you.

I would talk to a pharmacist about weaning down and see the new doctor and hopefully he/she has new ideas. Shame on the wait but you should be medication free by then.