Tuesday, 13 March 2012

Neurologist and Neurosurgeon Appointments

Yesterday Violet had her Neurologist review.
We again discussed Violet's chronic daily headaches and I asked him if he thought it may in fact be her epilepsy medication Epilim causing them. Violet has been medicated for her seizures for 4 years now but she has only been on Epilim for the past 2 years. I have worked out her daily headaches have been going on for approx 18 months.

Neurologist tried to call Violet's neurosurgeon to hear what the official ICP results were but he was in surgery. I did explain to him we would be seeing him today anyway and not to worry as it would only be waiting one more day.

Even though I have multiple alarms to remind me to medicate Violet twice daily,  I forgot on Sunday morning and by then it was too late to administer it. Guess what she didn't have that morning...no headache. Then after I gave it to her in the evening she had a headache straight away when she went to bed.

He hadn't personally heard that Epilim could cause headaches but looked it up and sure enough they do in a small percentage of people (10%) seems Violet may be in that percentage. He has decided to try her on Keppra and slowly wean her off the Epilim to see if it helps.

Don't know what the chances of Keppra causing headaches will be as it one it's side effects too :(

Of course this comes with a huge risk, tweaking with seizures meds will make her susceptible to having  seizures. I really hope Keppra controls her seizures as well as Epilim has the past 2 years. Such a hard decision seizures vs daily headaches, no way do I want to see her seizures not controlled but at the same time her daily headaches are extremely debilitating and feel I have to try it for Violet's sake.

Her neurologist was up until then going to try another analgesic which in my opinion will only mask the real issues.

This morning we again met with her Neurosurgeon to discuss her recent ICP monitoring. He said there were no massive spikes in pressure from the readings. So seems all is well with her shunt which is fantastic!!

He is happy to see how the different seizure med goes and review her in 1 year all being well.


Diana Taylor said...

Of course Violet would be in that 10%...she is a very special girl. All fingers & toes crossed that everything will be ok on Keppra. As I have said before Sarah- keppra was Thomas' miracle drug! x

Alison said...

I really hope this works and you can see an end to the daily headaches - must be awful for her. Glad the shunt is working well though!!

Missy said...

I really hope this works and that those awful headaches disappear. I cant imagine having a shocking headache each day...pray for no seizures in the mean time.
Glad that her shunt is working well xx

The Taylor Family said...

Such good news!!!! So happy to hear about the shunt and also that the may be some relief in sight for the headaches. Fingers crossed! Rach xo

Lesly said...

Great that the shunt is all good. Fingers crossed that the change to Kepra will see the end of the headaches while still giving control of any seizures. Love to you both (hoping also that your MRI result was good ... as not seen any news of this am a bit worried XXX).