A while ago I finally got an appointment!

Since my last post I was complaining that I was having to wait 8 months to see my neurologist, my hours has been cut down and I was still having seizures.

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.

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.

Been gone..but still around

I have not added to my blog for a long time, but no news is good news. I am feeling pretty good.

I have been back at work for about 6 weeks. I have slowly been easing myself into it and am still not doing a full 40 hour week. I began by just doing two hours each morning which I felt fine with, allowing me to see what was happening in my department, nut not actually taking on much work. Though I never really did 2 hours because was hard to get away on time. I then been increasing the amount of hours I have been doing, depending on how I feel. Two weeks ago by mistake I did a full day, a lot on and a stressful day, I was now back managing and creating images. It did hit me the next day, but I have managed 3 full days and two six hour days last week. It is extremely tiring at the end of the week and may have pushed myself a bit too far.

My scar and head have felt pretty good, I have had some bad moments, some really bad pains (like someone stabbed me in the head and twisted a knife in it). Sometimes I will get headaches, it was not a great day yesterday, but some ibuprofen sort it out as log as I keep them up.

I have not had any fits, I am still on the medication which has stopped me having them but I would still get the odd funny feeling but they have stayed away.

Since my last entry I have had a MRI scan, the first since the op. This is what will all my scans will be compared too to see if anything grows back. Today was the appointment with my surgeon. We discussed the scan I had and said nothing bad appeared wrong. i will be having scans every 6 months to make sure there are no changes. Six months gave me some confidence as I once thought it was going to be every three months.

We discussed my eyesight, it has not improved one bit, my right eye is only slightly working though my eyesight is clear, just not a full vision. The Doctor said it was strange how it seemed to start to come back when I was first recovering but after a couple of weeks, went to its current state, usually it either doesn't come back for a long time after op or does comeback quickly (like I thought it was.) I have got used to my eyesight, I am still bumping into things, but my wife has said that she forgets my eye is not working as I do not let it affect my life. I am used to bumping into things now.

So that is the update, I will add more as I get more towards getting back to working full time. In a previous entry I mentioned about pictures which were taken while I was being operated on, I saw the cd with them on at the hospital today, though I am not allowed it until they have been cleared by the legal department. I have not even seen them myself as the computer was not logged in.

So keep your eyes peeled for pictures of my brain, I know you all want to see them!  For the moment a few pics I got of when I was in hospital, a few days the operation.

Been a while

It has been a while since my last blog post. To be honest not much has gone on.

I am recovering well, my scar has healed very well. As far as I can tell I have some scanning left on it but just in small areas, around where the part of my scull was removed.

I am getting out each day for a walk, doing more each day, currently one hour. Last time I had to have a nap was after a weekend at Centre Parcs, I couldn't do as much as everyone else. They all got bikes, myself and Melissa didn't though it was tempting to get the bike which has a large seat in the front but we it was unfair on Melissa (still in a mood with her.) After we got home I slept for 6 hours, woke up at 7pm, went to bed at 11pm, I ended up getting up at 9am. Was just proof that I was still recovering. The weekend was just what I needed as was getting a bit frustrated.

I have been working in my computer to get used to it, resting every so often. My eye sight is very clear in my left but have had no progress in my right. In the next few days I am going to use photoshop to give you a rough idea what I see. I am still not 100% used to my eyesight when I am out because I have been bumping into quite a few people and alot of people have been cutting me up.

Back to work next week, couple of hours a day, then increasing it each week.

I will post the pics which gives you a rough idea of my sight soon.

Tired

So this is it, the start of the start of the frustrating part. We got back from Paris on Monday, was an extremely exhausting weekend, I actually fell asleep while on a river boat near Notre Dam. I had a few naps on the train but did not want to ruin my sleep pattern as it is nearly normal.

The next day I woke up feeling pretty good, I had to go to the doctors to out my prescription in and thought I would also collect a few bits, milk etc. I was out for about 40 mins. I was absolutely exhausted, Paris was still taking it's toll, I just felt drained. Took me most of the day to sort myself out.

As my eye is not realty doing anything I have decided to just get used to it. I have been on and off my pc, letting my eye get used to it. It stays good for about 45 - 60 mins, it then gets tired but does not cause headaches. I don't feel tired jus my eye.

I have still popped out for walks, just the local park, but I am not going as far or I am stopping half way for a while. I feel I just need to keep this up so I can get more confident as areas which I am not used to with my dodgy sight can still be a bit daunting.

A nice relaxing weekend now with friends at centre parcs, nothing like a weekend break to help this frustrating part of recovery go quickly.

Home Alone and Speedy Family

Last night I was left home alone for the first time, Melissa is cycling to Pairs (UK bit was yesterday, today was part 2 now in France)

Today was tiring (yes again) but hopefully means i will be all good tomorrow to see my fantastic wife get to the Eiffel Tower. I took it reasonably easy today, watched the rugby and chilled out. i Went into town with Mr Ashton for a few hours, had a couple of rests but it felt good. Did get a freaked out 8 times by people appearing on my left hand side and bumped into someone or something 4 times, these happened at the start, got used to it and adapted myself near the end.

Taxi is picking us up at 6.30am tomorrow and euro star is at 9.22am. I am going to try and sleep as much as I can, not very sociable but I want to as much energy as I can to see my wonderful wife cross the line at the Effiel Tower (and my #1 sister in law Kirsty) 200 miles in 3 days! It is all for diabetes uk, if you want to sponsor them you can find their just give pages here.

Diabetes UK Just Giving Sponsorship Page

Just a quick update, I may try and blog from France tomorrow...oooh!