choking fits

[nicholas:)]

Question re choking fit

Brief outline…

I have not been diagnosed with epilepsy – eegs, videotelmetry and mri scan ‘normal’. Been fitting for just over two years. I averaged 70 nocturnal (day or night dosing, full awareness) but came down to 14/15 a month form May when I was put on tegretol 800mg – 600mg at night and 200mg am. At the same time I suffered severe anxiety so I was put on Diazepam – peaked about 212mg for the month of June but came down to 8mg by August and September.

The tegretol took away what I termed ‘epileptic’ fits- convulsions (with auras), electric shocks through my body and/or head. I kept a detailed diary which I take to all my appointments. At my last GP appointment the doctor told me that she thought I was too doped up. She believes it was the diazepam that reduced my fits and I was put on Clonazepam 5mg- 4mg at night and 2x 500micrograms during the day. Her intention is to wean me off of the tegretol so she put my nightly dose down from 600mg to 400mg and I stay on 200mg during the day. I will now see her each month for further reductions of the tegretol.

Well it’s been a month since my tegretol was reduced and I experienced today a ‘choking’ fit. I was dosing on the sofa and as dosing into sleep (this is the time I usually fit), 50 minutes into my dosing I had what I call a fit but it was one of the ones I use to class as my ‘epileptic’ fits prior to going onto tegretol.

I am concerned about coming off of tegretol but the GP thinks I need only be on Clonazepam. I am in dread that my old type seizures will return. On Clonazepam my fits are low at the moment, 2/3 a month and are usually ‘vocalizations’ – I have an aura of fear/dread and I yell/shout/scream out. I personally would prefer to stay on the tegretol with the colazepm, even though they make me drowsy and clumsy.

I would be really interested in others’ opinions.

Thanks
Nick

 

[Crash]

Hi Nich,
Its a tough one,try and go med free and risk seizures or stick with your Tegratol and side effects,but you always have which is pretty important is peace of mind,or whats left of it on meds!!! If i were in your shoes,i would tell the doc you want to stay on your Tegratol if thats what you want,you can always review your situation at a later date.

 

[Nakamova]

Since it's all trial and error, you might want to stay at you're current Tegretol dose for a bit longer, and see if you continue to have symptoms that you didn't have at the higher dose. If you do, that will make it pretty clear to you (and hopefully to your doc) that the Tegretol was actually having some benefit at the higher dose, and worth keeping at that higher dose.