Over time my appointment was changed to a closer date, the last one I got was the end of August, 4 months after requesting one but it was better than December. My last full seizure was in June, we had been away for the weekend and were going to go out for a meal with friends, that had to be cancelled. That was my last full seizure but I was still having what I like to call mini fits, which I would zone out and got incredibly painful headaches which meant any slight movement of my head was incredibly painful. this also sucked all the energy put of me. If I was ill for two days i would only be awake for about 8-10 hours. Even though my eyesight hasn't approved at all since my operation during these issues it was more noticeable and I would struggle seeing normal, well my normal.
The date with my neurologist finally came around. I was waiting for this for a long time and had been keeping track of any problems I had been having so I could give a clear account of the problems I have been having. Straight away I said about how long I had waited for an appointment, she was shocked. Supposed my doctor should have pushed this through and said I needed an urgent appointment and I would have got one in a couple of weeks, bit late by this point. I told her that i was on a very high dose (higher than NHS allow) of Keppra which was given to my by the private doctor. This dose was not agreeing with me and could have been causing a lot of my problems. We both agreed that I needed to try something new and both agreed on Lamotrigine. Problem with this tablet is that you cannot start straight on the acquired dose, i would have to increase the dose at a very slow rate. I would start off at 25 mg in the evenings and after two weeks also take it in the mornings, then I would slowly increase either the morning or evening by 25 mg, my aim is a total of 400 mg a day so at the moment I am only half way there, 100 mg twice a day. Now I am half way there I have also been allowed to reduce my Keppraa, only to 3000 mg per day which is the NHS recommended limit. I do not know if I will ever be off the Keppra, I may just always take both lots of tablets. If it means I am not getting seizures then I will be happy, but would rather just stick to one tablet.
Though since June I have not had a full on fit where I do my zombie impressions and wake up very aggressive This means that in about 7 months, if I have had no seizures I could get my driving license back. This does depend on y eyesight though. It has not changed one bit and I can only see half of what I should see. I am now 95% used to it, I still walk into things and come across very rude when I don't respond to someone when they to the right of me and try to get my attention. This is a waiting game, one person who I have met said that their sight took 18 months to come back and I am not there yet, I think I will be getting annoyed around that time though, especially if it means I am still not allowed to drive.
I am still getting a few funny feelings and having points where I have the headaches which I counteract with a mixture of ibuprofen and paracetamol, plus lots of sleep. These are not happening as much and if they do they do not last as long. Today I woke up with head pains and my dodgy half blind. But with a mixture of the pills I was back to normal after about 5 hours. Though obviously not perfect as just before writing this entry I was on my iPad and was getting a wired feeling something was going to happen but it passed. Even this happened I see it as a good sign that I am getting close to the finish line as they did not last anywhere near as long as they used to.
So lets see what is going to happen as I progress with these tablets, I have a follow up neurologist appointment and surgeon next year which I will have a MRI scan for, fingers crossed nothing will have changed and my tablets will be sorted.
On a last interesting point. I went to a new barbers and he obviously found my scar. He asked about it and he had gone through a very similar experience, headaches but no seizures. He is on tablets and had a very good recovery. I still have parts of my scar with no feeling and a funny bit on it which feels like a bit of plastic or stitching was left on my scar and waiting for the barbers clippers to catch it. Every time I go to get my haircut I always tend to have a different barber and they always ask about my scar and I have to explain, means I get a free lolly at the end though.Sorry for the late update.
