Stargazer4moon's blog: "Neuro-Surgical Blog. Fit Free? Maybe, time will tell. HEAVY GOING & TECHNICAL)"

I had a letter yesterday from the hospital, namely from the Neurosurgeon instrumental to my having surgery.  It read that following the EEG tests to ascertain electrical activity in respect of future seizure activity, the results showed that although they were aware of a small number of sharper waveforms, during the over-breathing exercise test, they were on the right temporal lobe.  These however did not constitute ongoing epileptic activity.  Therefore it would appear that further medication reduction could take place in a year's time. 

This will be my next appointment with the Neurologist and hopefully he will write the prescription for reduced dosage medication and the reduction can begin, slowly of course.

These results are good news and I wish those who matter to me were still alive for me to share this happy news.  The struggles over the last four years have been worth putting up with although it has to be said that maybe the worst struggles encountered following surgery occurred over a period of two years.  Anything after that was self-inflicted and nothing to do with surgery outcomes.

It would be nice to say that this is the last post but I suppose it is always gratifying to say that another year has come and gone with a seizure. 

Perhaps it is not good to tempt fate but I hope that fate will be well tempted to make my test record and results irrefutable.

Today I am doing something that has never been done - for me that is.

We are just off to look at a dog with the view to bringing it home.  I am just trying to think what questions need asking and quite frankly cannot.  It does not bother me which is maybe a little fool hardy if, say, he is not house trained.  We will see.

This all began with a housewarming party in Liverpool where we met a Tibetan terrier called Diesal who was adorable.  As our friends were going on holiday they were looking at kennels but were devastated to see how little space Diesal would have - about a dining room table sized cage.  During a conversation about logistics, we live half way across the country, they live on the coast but we were told that they could transport Diesal to us.  I said it would be no problem and we had him for three weeks.  This may not seem strange but I have never owned a dog before and not handled them much either. 

So this was another learning curve but we coped and I would never have offered prior to surgery.  Somehow it just did not matter that the carpet was getting slightly dirty and the house was getting cluttered with toys.  It was enjoyable albeit stressful but we calmed a young and boisterous dog down much to the joy of our friends. 

We missed him and have decided to get one ourselves.  All this is by the by but it shows just how surgery has changed me.  The other thing is that I have not had a seizure in two years and I am again decreasing my medication.  I have not had any glitches either and those that did occur were stopped by means of making my brain use another neural pathway for the impulse to travel down, namely the one that takes me into the state of meditation.  The grass is growing over the old pathway that the impulses travelled which causes the seizures and now I hope the gate can be closed on that chapter of my life - if you can call 43 years a chapter.

There seems little that bothers me anymore and my concentration is intermittent.  I can still write a paragraph without losing track of what I first said in the paragraph.  However, forgetting why i have gone from A to B can be a nuisance at times.  It has to be said that age related memory loss could be the cause of this. 

My mother died in December, the funeral was in January when the snow was thick and travelling was hit and miss.  It was the first time I had met relatives in 20 years and that worried me but when the meetings happened it was OK.  At least I held my own so what I thought was stressful it turned out was not.

On occasions I forget my evening medication without ill-effect which is lucky due to this happening when we travel long haul.  Possibly this does not mean much but to go 24 hours without medication has not as yet cause problems.  Reduction though is being done at 50 mg over a period of one month by missing one dose every other day.  Eventually I hope after another month to omit that and dosage will then be 200mg AM and 200mg PM.  It is at present 200/250mg am/pm.  My neurologist is not aware of this but after our visit in July I am hoping he will write a prescription for 100mg tablets so I can further reduce the doses with the view of completely withdrawing them from my life.  This will give me freedom to do things at short notice without having to worry about having the medication on hand.

 

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Well as I finally reduced the medication to 200mg twice daily I now have the pleasure of having an EEG.  The Neurologist has written to say that he is delighted that I managed to reduce the drug without further seizure but warns agains furtrher reducing it for the present until it can be ascertained that the chance of a seizure occuring is none.  An EEG will show if there is any abnormal activity left that could possibly cause a seizure at a later date.  If there is none then he would consider me decreasing further as gradually as I did in this instance.  I saw him at the beginning of July, 2010.

The amount they say should be reduced and in a specific time is far too great and too little.  I mean they would decrease it at 50mg a month.  I think it took me 6 months to come off the initial 50mg in the mornings and would do this again. 

I am not in a position to further reduce due to not having any 100mg or indeed 25mg tablets.  However I have no intention of changing anything for now.

 

 

October 2008 I have come to the conclusion that people flap too much, too easily. Maybe that is the way things work in neurology. Well, I was just checking back to my last seizure and that would appear to be in February where I did a nosedive. I discount the ones in Goa even though everyone else says they were but even so then it would still mean the last one was in February. There was a weird one it must have been May time but that is debatable and I won't argue. So it is now the end of October and I have had no further seizures or blips and I think that providing I can get my brain to travel down a differing neural pathway then anything untoward just travels there and is gone into wherever it is electrical messages go when they have done their bit to be noticed. My neuro- psychologist added the number of the this and thats together and decided to keep me on the list as a six monthly patient rather than discharging me. Well, I am not worried and I know stress is a factor in making me unable to concentrate just as when the pressure changes. How you can prove this I have no idea but it does not matter and is not worth worrying about. It seems that it does not pay to be too honest about everything that occurs with your memory once because it is taken that it happens all the time. Maybe I just don't make myself clear. Some of the results of the tests I did recently with her had deteriorated and I get the impression that it was a cause of concern. Oh, one thing I did learn and that should have been apparent to me was that the typslexia is probably something that will cease if I slow down my keying in order to let my brain catch up so one does not run on in front of the other. This is all to do with getting used to the new ME. I have speeded up physically as well as mentally but even so my physical (typing) out strips my thinking and that is maybe because composing something is a pre-programmed thing. In other words my brain has thought it already on a different plane of consciousness and has not communicated it to my hands. That was an example. I was typing it to and transposed it so the words started ti fortunately I noticed that before I continued. There are probably better examples and I will try to make one and not stop to correct it as snon as it has occurred. This means just typing without looking ans I will tryi this sot see what exactly come out . I have noticed that when I am fantasising that I am on a derretne plane of consciousness and can typr ehwn I a falling asleep. It does not always make sense but they are complete words. Judging by that sample of typing it is not easy composing something whilst not looking at the keyboard. The brain needs to have a form of stimuli to be able to make sense of what is going on so that could be like the blind leading the blind, especially when it is done at a great speed. The other thing I was told is that I don't concentrate when I am doing something tedious and just jump in and thus jump to conclusions. I will admit to that and my worst habit is skip reading. I have never been able to do that until now and consequently I need to refine the art of it because somehow I have not learned how to skip properly, if that makes sense. So in other words, I skip read through something then try to repeat it or answer it if say it was an email. At the end of the oralising/verbalising or composing I have totally picked the wrong end of the stick and have to apologise for getting it wrong. I think this is trying to do something too fast because I seem to think there is no time to do it in. Maybe it is because my mind is running on to all those other things that remain outstanding still to do. My surgeon has signed me off as far as clinical visits are concerned because all is joined and knitted now. In fact it would have been after two years were up. He did state that if I continued to have regular seizures then I would have to go back in for re-surgery which seems a little drastic but this seems to be normal and not unexpected. This being so, why did everyone worry so much?. My surgeon was not worried about it and I told him that I was not worried either. It seems it was the rest of the world making hills out of grains of sand. With the worries of the book out of the way and refined I don't really have anything to worry about greatly especially now that I have sold one tenth of the quantity printed. The final score is that I have had no more seizures and am still on 250mg am 250mg pm - Lamactil.

From July 2008 At present it seems that after an increase of medication things have evened out again. So, I am now on 250 mg AM and 250 mg PM - Lamactil. This was following a blip after seeing the Neurologist on June 17. I did start to have a hypo but stopped it by having something to eat. My hands were shaking as I tried to open the snack bar just like they did the last time I had one that I managed to stop. There is a difference between the beginnings of a seizure and the beginning of a hypo. It is a visual thing mostly because everything looks blue just before a hypo and I feel unreal or sick or like I want to faint. The start of a seizure is like a sharp jolt in the stomach which is like the second brain and it seems to have a huge surge of electricity - well that is what it feels like to me. It is similar to that feeling you experience when say you have forgotten your purse or even your front door keys. However the sensation is actually sharper and quicker than that feeling of doom or fear. I still don't get that sensation any more, the feeling of fear in the pit of the stomach or the butterflies in the stomach, that is. So nothing really bothers me still. This probably does not mean much but I have sold 14 books. I cannot imagine doing this without having the surgery because it has required a lot of confidence and a lot of organisation to get things into a state of * Well, the only thing I still have trouble with is word recall which is annoying but to save stopping the thought flow I just put asterixes down and hope the word comes eventually. It usually does but sometimes I have to ask for help. Certain noise frequencies irritate me more than is probably acceptable but this is due to noticing so much more and having to acclimatise to all that I did not notice before surgery. I have learned to think before speaking which has taken two years but due to speeding up I find typing is a problem at times due to transposing words. My neuro psychologist tells me that I am going too fast in mind for the body to react to. She told me to stop and slow down or leave it for a while and go back. I do type faster than ever now so this is probably another thing that needs re-learning. Following my visit to see the psychologist my memory has not deteriorated but my attention span has decreased which could be down to have the seizures or stress. Because of this rather than having open appointments with her it was decided to make one for six months hence in case the seizures carry on and impair things. I am hoping to have reached the state of balance now though because I do not really wish to increase the medication but if it is needed then I will have to.

I went to see the Neurologist yesterday and made him laugh up his sleeve. This was because I mentioned the seizures/black outs I had were due to extenuation circumstances. One being that last year's ending was stressful and that murder could have been committed. I think he covered his smile to hide that fact that he has a sense of humour. No actually it was to hide the fact that maybe he understood and did not wish his thoughts to be noted. Anyway, he confirmed that I could increase current medication up to as much as 400mg twice daily. I thought this was what he said last time we met even though everyone else was adamant that it was 400mg a day. He also said he would inform my GP of this in order that she does not phone me up to question about it. I had to fob her off last time, about the increase of 50mg, because she only had a note of increases up to 400mg daily and not twice daily. It is obvious that the brain is a creature of habit and my Neurologist again pointed out that any sort of blip or indeed black out should be remedied immediately with a dose increase. Presumably as the brain has been used to seizures for 43 years it is a hard habit for it to break and a habit it could soon get back into. Therefore thia has to be nipped in the bud straight away. I am not sure how long it would take to completely re-train a brain but hopefully it will be soon. It had after all been fully out of seizure habit for over two years now and should have lost touch with its penchance for seizures. Well that is how I interpret it. However, the blip last night was just a slight feeling that something might or could occur and in order to stop the brain deciding to allow into existence a further increase has occurred.

Well, it seems that once you cease taking drugs the side effects cease and all becomes flawlessly clear. It seems strange but wonderful not to have a terrible skin these days. My friend who is a beautician was forever going on at me about the state of my face but it always seemed pointless going to great lengths just to clean it when the condition never changed. This was after spending much time and money on skin treatments that, quite honestly, did not make a dent on the coarse and opened pored skin. Actually it made me despondent at times because it never really looked good except maybe when it was slightly tanned. Now it is so much better and although it will never be flawless after such a long time of being coarse, it is smoother and not as dull or lifeless. It must be good because my friend no longer goes on at me about its bad state, in fact she positively gave me a glowing compliment about it. This had to be due to withdrawing the Primidone/Mysolin because that is renowned for its bad effect on skin. Also Phenytoin was a culprit for causing coarse hairs and I would imagine coarse skin because they are made from the same substance, i.e. keratin, Although that was withdrawn many years ago it must take several years for it to exit the system. Perhaps it is the effect of losing both drugs from the system and in several years time perhaps it will be flawless when the total effect of the Primidone have finally worn off. To date I have had no further seizures and am still on 200mg AM and 250mg PM of Lamactil/Lamotrigen. There is no move to reduce this for the present time and maybe it will have to remain part of the daily routine. However, it is so nice not to consider having seizures a part of my life. The advantages for me of having surgery have been many fold and it has to be said again, "If I knew then what I know now, then I would still have the surgery, including all the post op hiccoughs because they enabled me to go down roads I would never have travelled if the whole procedure had gone like clockwork. Just one of those examples of life's struggles that are good for progress. There is not much else to report but I am happy and waiting for other events in life to progress. Time will tell what is around the corner and when it shows up then it will be recorded for posterity as usual. I still don't keep a diary of events which is time saving and quite amazing

Many things become clear over time. However, it is the knowing thereof which makes it seem easier to deal with. Things take less time to do now for obvious reasons mainly because surgery kick-started everything into action. This also refers to the mind, which has recently been ticking over too fast for me to deal with. Because I notice much more now everything started to get on top of me. This is in respect of all the outstanding tasks that require attention, some from many years ago. When I look around I see what needs doing and it seems endless because I notice it and this has caused a bit of overload, I think that is a good word to describe it. Because there is so much to do the whole thing has become daunting and to the point of 'Where do I begin,' and then I realised that it has always been like this in spring. It is just that now I notice it all and take it all in whereas before it was no problem because it did not register either as important or at all. I am not sure at what point this happened, the not noticing things because I did not start out with a backlog of chores. I think the whole lot started after losing about twenty-eight pounds in weight due to the side effects of an anti-convulsant medication. The weight loss was mostly muscle so everything that took long enough to do before became harder to do because of the loss of muscle and stamina. That is probably the point when everything went by the wayside. Recently, I have been working out, in a manner of speaking but without using the resistance part of the routine due to the effects on the face through swelling. However, the exercises can be done without using resistance or weights and this has built the muscles nicely. Now everything seems effortless and the fact that I do things faster now is such a boon. However, this does not stop my mind ticking over and noticing all that requires noticing in an overload manner. I was forced to wash the windows, a job long overdue and one I did not relish doing but as I was actually forced to do it not only was it done quickly but it was done without worrying about it in respect of climbing ladders and falling into the blinds, something I have done in the past which put me off cleaning windows in two rooms, both with Venetian Blinds. It was wonderful to complete the task quickly and in an efficient manner which has encouraged further feats. What has been wonderful is not to have had a headache for ages because that can be a drain and now the pressure is no problem much more is achieved during a day. To date I have had no further seizures so that is one less thing to worry about again. I am not sure why but I seem to have made things complicated and working in a simplistic fashion has helped no end as there seem no mountains to climb now only mole hills to stumble around. One thing that has been causing concern though is my ability to type. There are times when I transpose letters in words, like taking a letter from the next word to be typed and moving a letter from the first word into the second one instead. What has been helpful is the fact that I can multi-task now, which is one thing I seemed very inept at prior to surgery. However, it is a learned thing and I am still learning how to multi-task without making mistakes. My concentration is not as good as it was and I find it hard when I am writing to remember what I have written earlier and have to go back and re-read it again. It makes me wonder now how I managed to string a book together without too many inconsistencies, or how I would manage if I actually did set about writing another. In respect of the retained memory, I find that I can remember things but only if someone does not say something in the interim. If they do then I cannot remember the thing I was told in the first place. The more that is spoken after the first comment the harder it becomes to recall what was originally said. However, this was a problem prior to surgery so nothing new there.

Well, I thought I had better note this before I forget and then have to admit, to whomsoever rings up to enquire about my seizure status, that I could not remember when it was. I have increased my medication 50 mg so that is 200mg am and 250mg pm. This was done because I am not pig headed and just felt the murmurings of something which I thought would be better nipped in the bud. I did not want to increase but it seemed prudent to do so. I have not had another seizure to date. It is coming up to the 2nd anniversary of the worst 17 days of my life. I do not regret having the surgery for all the problems as life has improved no end in so many respects. For instance, I do not have to worry about leaving things in the gangway in case I have a seizure and break my neck on it whilst having an absence, which is the form the seizures took. I also do not have to worry when I climb ladders, not that I really did worry before but there was a time when a nasty accident ensued whilst up a ladder and the venetian blinds still bear the scar, as does my forhead or eyebrow. That is one way I could remember the siezures, look at all the visible scars that have occured during an absence!! The only problem I have, and it is not a problem, is that I have no excuse for not doing things now because I have sustained no injuries that have stopped me from doing things, say doing Spring cleaning. Well it is hard to lift ladders and your arm when you have fallen on it so that was a valid excuse for not doing a lot of things. Another thing I could not do for ages was ironing because during another seizure I ironed my finger and had my husband not been there that day then who can say what damage would have happened. I was able to iron again after that had healed and it did not take as long to heal as it does when a bruise or strained muscle have occured. Now I have to get on with it but the only problem is that it is too wet at present to be washing the inside of the house. Well, I will have to do the gutters which are probably the only things that have had a proper clean each year. I would rather have fallen off a ladder in order to have clean gutters and facia than be totally overrun with spiders!!!

There is something that has not been noted and that is about the olfactory system. After surgery and during recovery I did get out of the house for evenings and it was before the smoking ban was in force. Consequently most places were pretty fog-filled with smoke. This was one of the least enjoyable times of my life due to the effect smelling this smoke had on me. It was really only this bad when the odour was from filter cigarettes. As soon as I smelled the smoke my face twitched on the right hand side and almost curled up. This was obviously a psychological reaction to the smell. It also made me feel quite nauseous. I think this was caused or occurred in the first instance during my stay in hospital. Following surgery and once moving I was taken out into the main passage way and then further afield for the stair test. The first thing I noticed going towards the stairwell was the odour of cigarette smoke which was, quite honestly, quite nauseating. The lift areas was the place where patients were able to smoke, therefore it was pretty thick and all from plain filter tipped Cigarettes too. This memory was the first one I had following the surgery of a nauseating odour and I think that is why it affected me so much afterwards. It was most unenjoyable going out not only in the evening but just walking around town because even out in the open air the same odour caused this effect. Strangely the smell of roll-ups did not cause any such problem, even joysticks or the smell of barbeques or bonfires were not a problem. Therefore I put it down to that first memory the brain had after it had been altered. (I cannot think of the word that best describes the state of my brain following surgery - in a word or succinctly.) This is still a problem at times - word recall can be a little frustrating so in order not to halt progress I just put asterixes where the word is not forthcoming. At least the thought flow does not stop when I do this. In respect of the smoke issue. Well it seems that time is a healer for everything because I can put up with it better, perhaps tolerate would be a better work, because I don’t put up with it especially when it is spoiling my meal or even time. Generally the way to get around this is to avoid the situation and that way it does not cause aggravation to either party. I think before surgery I would have just sat there and inwardly fumed and the outgoing fumes! My patience thresholds have improved a little but I cannot put up with people going on and on about something. It gets irritating and I do have to control that, not saying anything, that is. I have recently noticed that I get distracted quite easily and when this occurs I lose the thread. I still do not get the fear sensation in the pit of the stomach which can be a little dangerous but not life-threatening due to me still having one side of the fear centres intact. (Well that is how I see it.) I can, however, be very wound up, which seems to occur quite often now so I have to watch for that happening or I get over-anxious which leads to a feeling of being totally unsettled. Fortunately, as I said, I try to get away from situations or avoid them where possible and that way I can stay in a state of equilibrium - this is a state that is most conducive for the adrenal glands because they do not need additional stress due to the likelihood of it causing upset and maybe even a seizure. I have recently been told, several times, that the seizures are life threatening which in itself is not a nice thing to be told. But on thinking about it, crossing the roads in India can be life-threatening, especially with only half of the fear centre there!! Anyway, I try to keep happy and unruffled in order not to get stressed out and things have been fine since the last one. Unfortunately, I do not make a note of them on a calendar anymore. That is something I do not miss and but for the fact that I actually note them here then I would never remember when they had occurred, the few that have occurred. Actually, I do not record a lot of things now. I used to note when my menstrual cycle started, maybe to see if that was an original trigger, which it wasn’t. Then I suppose it was just a force of habit to do it especially now the menopause is occurring. The cycles usually run a three week course but can be four of five and the longest was over 20 weeks, as far as I can remember anyway. It is not important to remember that fact so it goes where things get filed in the brain for future reference but once filed there they generally are not easy to recall. This happens only if there was a special date or event when the cycle occurred. I find it is not important to note things that have occurred even to not doing such a long-winded diary. Now I just jot a line down to remind me of a particular event or a punch line I want to remember for use in future writing. I don’t think that prior to surgery I would have been able to have acted on these new jottings. As I say I only put them down for future use in say writing letters or even writing stories. One thing I am glad about is that when there is a writer’s block it clears suddenly and writing just flows. I have no idea why this is because I have no idea what causes writer’s block unless it is pathways that have become cluttered in the brain that cause the brain to be unable to pass that sort of thought - from the realms of fantasy that is. It is not problem writing everyday events but composing fantasy is different and therefore must use a different part of the brain maybe linked to the imagination. Well, I think that is about it except that yesterday after a foggy time it was just like someone had wiped the lenses, opened the doors, windows and curtains and I was more alert than I have been for ages. This is with only five hours sleep, plus I had been drinking wine as well as doing a lot of work around the house and on the computer. Nothing seemed to bother me so it was fantastic to have such clarity of sight, thought and action. I noticed the barometric pressure was exceptionally high so will note this to see if the same thing occurs again. I don’t think it was anything to do with the alcohol but I could again be wrong. I know when you do drink it makes you more alert but recently alcohol has been making me incredibly sleepy and very unable to concentrate. I think mood affects the way alcohol reacts on the system which makes everything difficult to analyse when there is not a constant cause and effect! Sorry for repeating myself but bear with me. In respect of not noting things, well I think that is down to the fact that I don’t think it important to do it anymore. It was probably a little like a form of compulsive behaviour before, although useful in respect of a diary, it served no other purpose to life. The most important thing is that it does not matter to me now if I do forget to write things down whereas before I would have been quite frantic and asked everyone if they could remember what we day on such and such a day or whenever. It was not essential so must have been a compulsion. Now, that is definitely it again. Did I say I had not had any further seizures since the last one noted here? Well, that is correct. I am on 200mg lamictal twice daily. However, should any further seizures occur then I will again increase up to as much as 400mg twice daily if necessary, in increments of 50mg per week too. Apart from that everything is under control, thank goodness.