Back to the drawing board

Back from Egypt, the whole holiday I was fit free. I had a few funny moments and dizzy spells but nothing to worry about. First holiday I have had since being operated on, so this meant it was my first holiday with a swimming pool and beach so I was teased by them as was not allowed in!

I went back to work feeling relaxed and ready to go. For two days I felt good (as you can while at work). Them I woke up on the third day with the metallic taste in my mouth, this usually means I am going to have a fit but generally felt fine. I went into work the next day and the metallic taste was still there but it was different and I felt like a fit was on its way, I ended up going home from work in case I was going to have one, I still felt odd all day but nothing happened.

I woke up the next morning, usual routine, watching breakfast news and I felt like I was going to have a fit any second, so I ran into the bedroom and got on the bed and waited, nothing happened. After waiting I got up and went back on the sofa. Then 20 minutes later it happened again so I ran in the bedroom, next thing I know I wake up on the bed after having a fit. My wife said it was different to my standard fit, this time I was lying there, unresponsive with heavy and quick breathing for and 1.5 minutes. When I woke up I was not my abusive to her but wasn't sure what happened but realised I had bitten my cheek. I did not go into work and stayed at home, The seizure had taken all m energy so I went straight to sleep and slept for 3 hours even though I had just had a good nights sleep. When I woke up I still felt strange and went and watched television, for about 4 hours I was like a zombie and even though I was awake my memory was short term and couldn't really remember what I had watched 30 mins later. At about 4 my brain switched on and it was back to normal, it took the longest it ever has to 'reboot'.

As my medication is still not working i thought I have to see my NHS Neurologist to get me on some new medication. I had still not heard from the hospital after getting a request from my GP so rang my neurologists secretary as it had been 5 weeks with no response. I rang the secretary up and she informed me that no request had been received which is why I had no response. As I had got a referral she let me book an appointment on the phone. My usual wait time for an appointment is about 4 weeks, I was informed the next available appointment was DECEMBER!!! Only 2 months before my annual appointment I booked in February! Because I had had my operation and had been prescribed some tablets I was no longer an emergency and was not on the list to be rushed through, only way I can get in before is the small chance of a cancellation, but I have to ring up all the time and it does not guarantee a slot.


Due to my epilepsy not being managed properly I have also been put on less hours at work and my management responsibilities delegated to someone else. Due to not having much notice when I was going to be off I kept leaving my team in the lurch. I am still going to be working but if I feel funny I can just go and if I feel a bit funny but nothing to serious I can work from home, working with out the stress. He fully this will help make me better.

I am going to give it a week or so and see how I feel, but I need to change my medication, this looks like I am going to have to go private and go and see the doctor I have seen before. The NHS is letting me down!

Let's see how I feel next week, at the moment I am feeling it hard to let work responsibilities go but I am slowly letting go. Life of a modeller for me for a while, luckily I find it relaxing.

NEVER PRESUME YOU WILL BE FINE

No news is good news...well so I hoped

Would be the correct term. But sadly I have been having problems again, this is probably going to be one of my longest entries as have a lot to go through.
Christmas has passed, it was a success, I had a few drinks ate lots and my head was fine. Apart from my scar you wouldn't have thought I had been coming to the end of recovering from brain surgery. I was back at work and working full weeks.

I had to go to Romford to have a MRI scan and have a meeting with my surgeon. The general outcome was good. It had healed well with a small amount of scaring. The pressure the tumour was creating was causing my daily fits, now 90% had been removed my fits had pretty much stopped but I still had to stay on my medication and you could now class me as epileptic. But this is still a good direction to go in as my medication was controlling my fits.

Then it all got complicated in late January. It all started at work, not my usual time of 9.30pm but around 1pm. I was sitting at my desk when I became very tired, the next thing you know some how I have gone to the shop brought some food and drink and got back to desk. I can only remembers all parts of the 20mins. When I fully came round I was exhausted,I knew that I had had some sort of fit and I had to home and rest. It would take me a couple if days t recover from this. This sort of seizure happened a few times, sometimes not tiring me out as much. This happened a few times in January and February.

It was just coming to the end of February and was still having the small seizures but just took them on the chin and thought I will have an appointment with my neurologist soon so will talk to her then. Though then something major happened.

I was watching television when I suddenly got the feeling I was going to have a fit, not just a small seizure, a full blown fit. So I managed to run to our bedroom and dive on the bed. Next thing I can remember is waking up on the bed and my wife telling me I had had a seizure and that and ambulance was on its way. When they arrived I was nearly 100% with it and they checked my pulse and blood pressure and I was normal. Very much like my first seizure I pulled my back and it took me a few days to recover. We had an appointment with the neurologist coming up s we thought we would wait till then to discuss with her what happened.

The day to have our yearly meeting with the neurologist had arrived. A year before I was hoping that this would be the day I would be getting my driving license back but I know that was definitely not going to happen, especially with recent events. We discussed what had happened to me and it is believed that the fit was probably caused by my scarring left from the surgery. To sort the problem was simple, up the dose of my medication. Which I was happy to do.

I started straight away on the increased dosage, double what I was on before. This took all my energy put of me, ended up sleigh a lot, had to take some time off. I was hoping this was going to be me feeling better again. But I kept encountering more and more problems, I was getting the feeling I was going to have a fit on a regular basis. My memory was not so good, on a number of occasions I would be discussing something with someone when mid sentence I forget what we are talking about, a number of people picked up on this. Feelings like I was going to have a fit were becoming more common. The decision was made that I needed to see my neurologist again as the tablets were not helping me, there was a three week wait so just had to be patient.

After we had started to go to see her again we were off to London to watch a show, I had been having a few moments but no drastic change. We went to the west end saw the 80s musical Rock of Ages then went out for a meal. During the next few hours I generally felt fine. We then went to a bar for a drink, I hadn't had a beer all day and felt fine so thought I would treat myself to a Guiness. We were standing talking when I suddenly knew I was going to have a full fit. I got myself to the ground...next thing I know I was sitting outside. I had a full seizure in the bar, pulled a few moves out for the family, very daunting for the, as they had never seen me like this before, my wife stayed calm and looked after me. When I woke I was still not fully awake and cannot remember this but I was very rude and was insisting I was fine and ready to move to another bar, even though I was flat out on the floor. I did not truly come around until we were driving home about an hour after the fit. I found that while I had my fit I bit my inner cheek, so hard it bled and swelled up inside, it was noticeable to people as blood was coming out of my mouth while I dribbled during the fit (HOT)!

This was the 2nd fit in six weeks so I rang my neurologist but still nothing could be done. I went to work the next day and felt ok

This neurologist was the first Dr to see me last year when this all began,I had to update him on the year I have had. I went through the problems I have been having and he has simply increased the dosage of my tablets to the maximum. I started them yesterday so have not got used to them. They are knocking me out within an hour of taking them. But when I woke earlier my head was clear, clearest it has been for weeks. I have also gone to my GP to get my prescription free, I also asked for Keppra which is the branded version of Levetiracetan, I have been advised even though the non brand tablets are available as I had no problems when I was on the lower Keppra branded tablets I never had any trouble. Un branded tablets are not necessarily bad but the chemical make up may be slightly different which can change how your body reacts, I just don't like the cheap brand.







I also got prescribed a oral syringe of Buccolam by my NHS neurologist. This is a liquid which can be injected in my mouth while fitting to bring it to end quicker. The private neurologist thinks it is pointless as by the time it is unpacked I will probably will have stopped, I also have to have someone who is prepared to do it. So this will probably never be used. Also I do now question why have I been prescribed these, the aegis 10 to 18 years!?!

Off to Egypt for a week in a few days so hopefully it will help me get used to the tablets.