MY TRIGEMINAL NEURALGIA 35

I just arrived home from Glen Trool. The weather was miserable, in fact so bad I didn't manage to take a single photo (taking photos is the reason I go walking). As I ascended Ben Yellary, the mist and low cloud became heavier to the point where visibility was down to about 10 to 20 yards. It then started raining so I decided to call it a day. On the up side, this was my first proper hill walk for some time and my fitness was considerably better than I expected. I met some people as they came down from the Merrick, which is where I would have headed if the weather had not been so bad. They said the approach to the summit of the Merrick was dangerous with ice so they called it a day and headed back down. The pictures below are of the Merrick and Ben Yellary from some time ago (on a good day).
TN not an issue during my outing and I feel really great.

MY TRIGEMINAL NEURALGIA 34

I experienced a couple of sharp stabs of pain on the left side of my scalp while showering and drying myself today. The sharp edge returned to the pain, not enough to make me cry out, but enough to start me thinking that I am heading down the road to severe pain again. Due to the nature of my TN over the years, I have never been sure if it was the medication that settled the pain or whether it just settled down of its own accord i.e. a type of remission? One thing is for certain, at the moment TN is not restricting my life in any way and weather permitting, I hope to get out for a good long walk tomorrow.

MY TRIGEMINAL NEURALGIA 33

Other than a small hint of pain (dull at edges) when drying my hair the other day, nothing worth talking about. I'm fully organised for Christmas, rather my wife is fully organised for Christmas despite having surgery on her knee last Friday. I managed a trip to Loch Doon for some photographs, talk about a winter wonderland. It was absolutely beautiful and, -11 at 2:30pm. Seven miles along an uncleared single track road in a rear wheel drive car was not so good though. So, seasons best to anyone who reads this and a sincere hope that next year is better than this one, even if you had a really good one this year.

My Pummelvision

Thought this was a bit of fun

MY TRIGEMINAL NEURALGIA 32

I had another flash of pain in my eye last night while eating. It wasn't enough to cause me any distress, but enough to frighten me in to thinking the longer boughts of pain would return. It was same as last time, there, but with a dull rather than sharp edge to it. So maybe the drugs are working to keep the bigger attacks supressed. The  photo below is something I had been wanting to do for a long while, but lacked the necessary skill.

MY TRIGEMINAL NEURALGIA 31

My wife underwent an operation yesterday at Crosshouse Hospital to tidy up a torn cartilage which had been causing her considerable discomfort for some time. I dropped her of at the day surgery unit at 8:00am and picked her up again at midday. She was told to rest for two days, but not being the most patient person in the whole world, she was trying to get back to normal after a couple of hours. On wakening this morning, she was not in the best of moods, probably due to the pain, and the realisation that she would indeed need to rest for a couple of days. So its largely over to me to do the running for her mother and step father for the next couple of days and tidy up the loose ends for Christmas.
On the TN front, still no pain and no apparent side effects from the medication other than sleeping the sleep of the dead at night.

MY TRIGEMINAL NEURALGIA 30

I visited my GP yesterday to pick up my prescription. He let me know that my bloods are still not right and asked me to book another appointment with him in January and get my bloods rechecked about the same time. He doesn't seem too exercised by my bloods being off. 

This morning, I received a letter from consultant neurologist, Dr Victoria Marshall, informing me that I had an appointment with her on 14 January 2011. I was aware that the neurologist who previously examined me would discuss my case with with the consultant, but I did not expect to get a referral so quickly. 

On the pain front, things are still going way better than I could hope and the only side effect of the medication that I am aware of is that I get a great night's sleep, not that I had trouble slepping in the past.

MY TRIGEMINAL NEURALGIA 29

Today, I made the mistake of informing my wife that I had been pain free since my discharge from hospital and was shortly thereafter rewarded with a stab of pain in my left eye. I should have known better. In the greater scheme of things, it was a very minor episode which, if nothing else, reminded me that I am not cured and that my old enemy is still lurking nearby. I read someone else's blog today and have to admit it caused me some distress. Its difficult to leave comment of support when you think your TN  the worst in the world and you discover its not even close. I left a comment anyway!!
My father in law was released from hospital today so that should relieve some of the pressure from my wife.  Not all of it, but some of it. Two weeks in the hospital and no reason why he has continual sickness and diarrhea; and no cure!!! He is 80 and they were kind of hinting that it might just be part of the aging process.
I have a visit to my doctor tomorrow to sort out my prescription. Onward and upward!!!

MY TRIGEMINAL NEURAGIA 28

Things have been going pretty well; still no pain. Only thing worth mentioning is the mess I made of my medication. Since being diagnosed with TN, the carbemazepine tablets I had been prescribed were 200mgs, so my normal daily dose has been 4 x 200mgs twice a day. On being discharged from hospital I failed to notice that they had prescribed me 400mg tablets. So for three days I took 4 x 400mgs twice a day i.e. 3200mgs per day. The side effects were pretty bad. My vision was badly effected, it was blurred and could not keep up with what I was looking at and I was seeing double. My motor functions were also badly effected e.g. I couldn't walk in a straight line or hold anything without dropping it. Fortunately, my wife worked out what the problem was and I'm now back on the proper dose and should be getting back to normal soon (I hope). I have now developed a spasm which causes me to hit keyboard keys twice or even three times, drop stuff and my limbs appear to jump a lot while I'm trying to sleep.

MY TRIGEMINAL NEURALGIA 27

My visit to the pain clinic went as expected. My medication was reviewed by Doc Martin who appeared happy with what I was on. As with my last visit, I was sitting there, the very picture of a healthy adult human being, if slightly overweight. Looking at me, no one would have known the trials and tribulations of the last two weeks. Fortunately, he had visited me on the ward and had read my notes. Nonetheless, looking at the other people in the waiting area, I still felt a bit of a fraud. I still have no pain or even the hint of a pain.

MY TRIGEMINAL NEURALGIA 26

Some of the blood tests at the hospital showed that my white blood cell count was not what it should have been. I was informed this was a known side effect of Gabapentin, so I was told to get my bloods tested about a week after being discharged. I visited the practise health care assistant yesterday and the required amount of blood was duly extracted. The result should be available in a couple of days. Interestingly, she told me that her husband had suffered from TN for a number of years, but that it had just stopped on its own and, so  far, fingers crossed, it had never afflicted him again.

I visited my GP today to discuss my medication. Given the fact that I was due to attend the pain clinic tomorrow, he was of the view that it would be better to discuss the meds with Dr Martin and take it from there.

Still no pain. Its funny, metephorically speaking, how I expect the pain to return, the thought never leaves me just now. The memory of the last two weeks is still very raw.

MY TRIGEMINAL NEURALGIA 25

Things are going pretty well at the moment. My medication appears to be doing the trick, even if it does leave me a little drowsy. The pain is still there if I provoke it e.g. dyring my face to vigoursly after I shower etc.

MY TRIGEMINAL NEURALGIA 24

So far, so good. Other than a couple of sharp reminders on Thursday morning, I have had no pain whatsoever. The medication appears to be working and the side effects are not that bad. By side effects I mean that my first dose on wakening leaves me feeling very drowsy for a couple of hours, lunchtime dose, still drowsy, but not as bad as the first dose and the teatime dose appears to be OK. There's also a bedtime dose, but I'm sleeping so don't know how it works on me. It's quite strange, because having been fairly resistant to medication before I  was diagnosed with TN, I'll take anything they tell me to take without question now.

I should have mentioned that I had an MRI scan specific to the trigeminal nerve before I was discharged, which shows there is nothing sinister going on in my head.....some would ask is there anything going on in my head?

I'll try some cooking this afternoon. Lasagna like 'Mama' used to make. A recipe of my own which I have honed and refined over the years into the best lasagna in the world (in my opinion).

My grandaughter got a camera for her third birthday last Saturday. 197 shots in less than an hour. Nearly as bad as me.

MY TRIGEMINAL NEURALGIA 23

I woke up on Saturday morning with the usual short bangs of pain in my left eye, but nothing compared to what I had experienced over the last few days. I did realise that the inside of my mouth was fairly sensitive, but again, nothing as bad the last few days.

About 3:00pm I felt well enough to attend my granddaughter's birthday party. This was the adult version. The children's version had been held earlier that day at a soft play facility called Juniper Jungle. My wife had been press ganged into attending and arrived home exhausted.

Anyway, I arrived at the birthday party feeling reasonably well, I even managed a couple of sandwiches. However, the birthday cake proved to be a step too far. Being a greedy 'B' I had to have two pieces. The second piece started the pain. I shouted Janice, and I managed to get out of my son's house before anyone realised what was happening. I did not want my parents or brother and his wife to see me like that.

I got into my wife's car just in time for another attack of TN pain at the top end of the scale. If I'm honest, this was not the worst level of pain I had ever felt i.e. not enough to make me scream, but enough for the tears, snot and saliva to start running and render me incapable of speech. Janice wanted to take me straight to hospital, but being the optimistic type, I told her to take me home as I was hopeful the pain would pass. No such luck.

The pain continued and an ambulance was duly called and it arrived almost immediately. While my wife was explaining my condition to the paramedics (again, they had never heard of it) the pain lifted leaving me a quivering wreck. The paramedics were superb and transported me to A&E at Crosshouse Hospital.

I was checked in by an extremely pleasant nurse, hooked up to all the machinery they use these days, blood sample taken and told someone would be with me in due course. I must have fallen asleep because I remember wakening and seeing another female nurse looking at me. As I went to say hello to her I was struck down by the usual lightning bolt in my head and the pain returned rendering me incapable of functioning. The nurse asked me what was wrong. I think I managed to say TN. She then asked me where the pain was. I think I managed to gesture with my hand that it was the left side of my face. She said to me 'if you're not going to speak to me, there's nothing I can do for you'. I managed to ask her to get my wife who would be able to explain my condition to which she replied 'only you can tell me what's wrong'. She thereafter said 'well if you're not going to speak to me, I can't help you' after which she drew the curtains and left me. My wife managed to gain access to me a short time later and basically brought the roof down about her before I got any assistance.

When people started listening, she was able to explain that I had been admitted previously and the best initial treatment had been pethidine. I think I was eventually administered pethidine and paracetamol intravenously after which I was admitted to Ward 3E, the admission ward, and then moved to Ward 2D, back under the care of Doctor Allan and his team.

The blood sample the nurse had taken from me on arrival at A&E showed a blood sugar level of 11 which was high enough to indicate that I had diabetes. Remember the birthday cake; a fasting blood test the following day showed that my blood/sugar level was normal. No wonder my granddaughter was hyper!

While I was in hospital this time, the sensitivity in my mouth and left eye remained high while my confidence to function at a reasonable level remained low. That said, the really extreme pain never returned and I was discharged from hospital on Tuesday 24 November. I nearly needed a barrow to carry the drugs they sent me home with. The drugs are really hitting me hard and I can only function if I really focus my mind on whatever I’m doing to force my way through the fog.

It would be remiss of not to mention the staff on Ward 2D. While there was little hands on nursing in my case, I was in a position to observe the care provided to others less fortunate than myself (can't believe I used the phrase 'others less fortunate than myself'). I can say without fear of contradiction it was superb. What I saw was nurses who really cared about their patients, the Ward Sister used the phrase "we try to go the extra mile here" and that summed it up perfectly. I suspect that the mark is set by Dr Allan who appears to be the most calm, caring and compassionate individual I have ever met (a great quality in a doctor). These qualities tumble down to Doctors Patten and Patterson and then on to the rest of the staff; care of the highest quality.

On discharge, Dr Allan provided me with a letter covering my condition and the treatment required upon admission to A&E, which I could present to the staff there should I be admitted again.

My wife has filed for divorce......only joking, but she would be totally justified if she did!!

My life is not my own!!

MY TRIGEMINAL NEURALGIA 22

Just after I had submitted the previous post, I was subjected to the most sustained attack I had ever known. It was way beyond any pain level I had previously known and lasted for almost 6 hours. My wife contacted my GP who immediately called for an ambulance which took around two hours to arrive. Meanwhile I 'd been reduced to a quivering wreck with tears, snot and saliva pouring from me. When the paramedics arrived, they were less than sympathetic. The male thought he would just drag me to me feet and pull me towards the ambulance. It was quite clear that both had never heard of, let alone experienced TN. My son managed to stop the paramedic dragging me from the house and I made my way to the ambulance under my own steam. Please bear in mind that at this point I had suffered from 4 hours of mind blowing pain. I was eventually checked in to the Casualty Department, only after they managed to find a treatment room.

A nurse came into the treatment room and offered me 2 paracetamol tablets which would have been like using a slingshot to sink the Bismark. I was unable to speak at this point, let alone put anything in my mouth; so I was duly recorded as "refusing pain control". My wife and son were eventually allowed to see me and at last someone was able explain to the medical staff that I was suffering from TN. I would have been as well saying I was suffering from an over ingestion of galactic moon dust. The pain was still unbelievable at this point. The doctor tried to examine my head, despite being informed that any touch to the left side of my head would cause untold agony, although I don't think I could have been in any more pain at that point. Eventually, I was injected with morphine.....not a jot of difference to the pain in my head other than the fact that the pain was the only thing I was conscious of, I had no feeling in my body whatsoever. My wife, god bless her, noticed that it was time for my 800mgs of carbemazepine. The only trouble was that I could not take anything orally. One of the nurses remembered that liquid carbemazepine was used on the pediatric ward. A short time later I was supplied with 800mgs of carbemazepine in two syringes which I managed to fire right into the back of my throat. About 10 minutes later, the pain disappeared completely.

I was transferred to an admitting ward where I was treated with the utmost care. Unfortunately the pain returned, shortly after I was admitted, and it was worse than ever. When I say I was screaming with the pain, I mean screaming. More morphine was administered and to be honest I have little recollection of that night. The morning arrived, more pain, more morphine, more screaming, the day became a daze and still no relief. What I do remember is that senior nurses were becoming increasingly distressed by my pain and their inability to help me.

I was then transferred to the infectious diseases ward (probably the only bed available) where I was put under the watchful eye Dr Allan and his team. The redoubtable Staff Nurse Brenda Thom and her 'in yer face' style of nursing was a godsend. Not a women to be messed around, as I found out to my cost. I will say it again, a godsend who helped me get through this, I would even go as far as to say she kept me sane. I could go down the 'angel' cliche, but somehow 'angel doesn't suit Brenda.

I honestly can't detail the next two days, probably due to the amount of drugs I was taking. The pain was still horrific and the morphine had been changed to pethidine, which helped a little more than the morphine.

Shortly after wakening on Thursday morning, the usual crushing pain returned. A jab of pethidine in the leg, around 10 minutes of agony and I was as right as rain. I even managed to eat some lunch and have a wash and a shave, my first since Monday.

Since then, I've had nothing other than the usual short jabs of pain in my left eye which usually signals the start of a full blown attack, but has been OK so far. I saw a neurologist from the Southern General Hospital today. He examined me at some length and discussed the history of my TN over the years. I have to say that I was most heartened by this visit and his open and honest manner regarding the options available to me. What he made clear was that surgery is the absolute last option and there are a few steps to go before it would even be considered.

I was also visited by Charles Martin, Consultant Aneathtatist and pain manager and I have a further appointment with him in a fortnight's time. His visit was a great boost to my morale which was not too good at that point.

So, I am now home with no pain and a bag load of further medication to take. Gabapentin and Amatryptalin both of which make me incredibly drowsy. I have renounced the evils of alcohol as it does not agree with the aforementioned drugs and it was probably time to cut down or stop in any case.

The real star in this whole scenario is my lovely wife Janice. I don't know if I could have been as strong as her if the shoe was on the other foot.

I feel like I am standing on the edge of a cliff.

Any mistakes in this diatribe are purely down to me, Carbemazepine, Gabapentin and Amitrypteline

MY TRIGEMINAL NEURALGIA 21

The pain continued at a fairly low level all day yesterday which it has done on previous occasions. I felt well enough to go to my camera club and that's where things took a turn that I did not expect. About half way through the evening, the pain suddenly reached a level I had not previously known. It was during the judging of the projected images section of the competition so the lights were low and I was pretty sure that, initially, no one was aware of my distress. I was totally incapacitated. I could not, or would not move, any part of my body, such was the pain in my head, mainly centred around the left eye and left side of the scalp. This continued for about an hour, with sweat pouring from me. I was hoping that of the images I submitted, none would win that section. Guess what? One of them did. It was only then that a number of people realised the difficulty I was in. Anyway, to cut a long story boring, I eventually managed to gather myself together, leave the room and make my way to my car. The pain was still as bad as it had been earlier, and I was certainly in no fit state to drive. I called my wife who did the necessary. While I was waiting for her, the pain subsided, leaving me a physical and mental wreck. I was shown great kindness by members of the club, especially Jim, whose second name I don't now. He waited with me till the pain passed and he was sure I could look after myself.
This episode raises a number of issues for me;
1. this is the first time I've ever had a sustained attack in public
2. this attack occurred just 2 hours after taking a full dose of my medication...is it effective?
3. when will I have the confidence to be in the company of a group again?
My winning entry entitled 'After the Rain'

MY TRIGEMINAL NEURALGIA 20

I had a pain free day for most of yesterday, I even managed out for a couple of hours to take photographs at my favourite spot, the Ballast Bank at Troon. The pain didn't come to much over the course of the evening, just sharp jolts of pain lasting for a millisecond. On wakening this morning, the pain continued, again with the sharp jolts of pain lasting for very short periods. The problem with the pain in this form is that you have no confidence to do anything as you are terrified the short periods of pain will develop into full blown sustained attacks which are totally debilitating. Still on 1600mgs of Tegretol per day, starting to doubt if it is effective. How would I determine its effectiveness? Stop taking the medication and see if full blown pain returns. Not an option!!!

http://www.flickr.com/photos/nutz1/

MY TRIGEMINAL NEURALGIA 19

The pain has continued at an irritating rather than excruciating level for the past few days. I think the thing that is difficult for people who do not have TN to understand is that the pain is either at zero or ten on the pain scale. I'm actually only beginning to understand that myself. It is the length of time the pain is present that changes. For example, it can be present long enough only to make you blink or long enough to really get your attention or long enough to make you to want to die.
That said, my outlook is still fairly positive. I still cling to the hope that I will wake up one morning and the pain will be gone for ever. As I have previously stated, I have much to be positive about and the support from my wife has been nothing short of miraculous.
I've still recieved no word from the pain consultant and hope that he has referred me on to the neurologist without seeing me.

MY TRIGEMINAL NEURALGIA 18

Some pain yesterday after a few good days. However, I woke up this morning to mind blowing pain in my left eye and the left side of my scalp which lasted for about 15 seconds. Now a second may not seem like a long time, but I can assure you every one of the 15 lasted a whole lot longer than it should have. On top of that, I have a heavy cold so I'm feeling a lot more sorry for myself than usual. Medication is back to maximum and the good news is that other than my initial episode of pain first thing this morning, there has been no further pain as I type this at 3 in the afternoon.

MY TRIGEMINAL NEURALGIA 17

The pain has been at zero for the last few days and I have even managed to reduce the Tegretol (not a lot). I can now eat properly, wash; brush my teeth and a whole lot of other stuff I was unable to do because of the neuralgia. If I was asked to summarise the pain on this occasion, I would have to say it has not been the most painful, but is certainly has been the most persistent, almost two weeks worth. Previously, the trigger points have all been external e.g. wind blowing on my face, touching my face and so on, this time it all centred round the left side of my gums, teeth, tongue etc. I even thought about buying a gum shield at one point. Anyway, life is now back to some semblance of normality. I still haven't lost any sleep due to TN.
I visited the doctor last Tuesday. I thought it would just be as simple as getting him to refer me to a neurosurgeon. Wrong!!! He needs to refer me to the consultant anaesthetist I previously visited, who, if thought appropriate, will refer me to a neurologist, and then if deemed appropriate, will refer me to a neurosurgeon. God knows when that will be! I feel quite stupid because the pain consultant offered to refer me on at my first visit and because I was in no pain and have never viewed myself as being ill, I said "no, you have sick people to deal with".  Bloody stupid eh?
Nearly forgot to mention it, to cheer me up, I bought a new i7 Pentium, 8 GB RAM, 24" screen computer. Its the doggies do dah's!!

MY TRIGEMINAL NEURALGIA 16

The pain disappeared completely last night and I managed to eat some solid food for the first time in four days. Great I thought, its finally settling down. Woke up this morning and much to my dismay, the pain had returned, although not with the same intensity as before, but still definitely there. However, it has to be said its a vast improvement on the last four days. Still maintaining the medication at 1600 mg of tegretol, topped up with steroids and anti-inflammatories. I might try to shave today, or is that a step to far. I'm more annoyed about being unable to brush my teeth. Still feeling pretty sorry for myself.

MY TRIGEMINAL NEAURALGIA 15

Started today on a positive note with little pain. However, my positive mood was short lived and the pain has gradually increased as the day went on till around lunch time when even talking could trigger an attack, The pain then reduced as the afternoon progressed and at the present time is around zero, but have the very real fear that it is only having a break and will return shortly. The medication is really doing my head in and my concentration is nil. I don't know how my wife copes. She really is stuck between a rock and a hard place although her step father's health seems to be improving somewhat which means he may be able to share the burden of caring for her mother. I managed to get an appointment with the doctor for Monday.

MY TRIGEMINAL NEURALGIA 14

Pain has increased again today with my teeth appearing to be the trigger this time. Probably around 7/8 on the pain scale. Already on the maximum meds so will just need to put up with it. I couldn't manage to run my dad to hospital today so that became another job for my wife on top of the ones she has with her own parents. I probably read too much, but I found another statistic that 50% of people who have ths condition for over 2 years commit suicide. I'm now into my sixth year and have not had any suicidal thoughts as yet. There's a positive and a half for you. I really must make an appointment with the doctor.

MY TRIGEMINAL NEURALGIA 13

The pain has calmed down considerably today, 5/6 on the pain scale. Washing was a real adventure and my teeth only got the lighest caress. So I feel much better mentally. Eating still causes great pain, but at 18 stones, I'm hardly wasting away to a shadow. I've still to put an appointment on with the doctor and will do so when I feel able to attend the surgery.

MY TRIGEMINAL NEURALGIA 12

Well, my old enemy returned today with a vengeance, despite the fact that I'd maintained my medication at 1200mg of Carbemazepine (Tegretol) a day since the last bad bout. The pain had been increasing for the past few weeks and today it hit 10+ on the pain scale again. Its settled slightly as I type this, probably to around 6/7. Meds are now up to 1600 mgs along with steroids and anti-inflammatories. I couldn’t even manage to wash myself today and what little I did eat caused excruciating pain. I don't know how my wife puts up with it. She has real problems with her parents; blindness, deafness, diabetes and a host of other ailments which means that she needs to do almost everything for them and on top of that, my father in law, who was released from hospital eleven days ago, has developed the same symptoms again which saw him admitted in the first place. She is an only child and is run ragged and really suffering. The last thing she needs is me performing the dying swan. I’ll phone the doctor tomorrow for an appointment to discuss the surgical options of which there are five, only one of which is non-invasive. Just to cheer me up, I read on a respected website today that there is no cure for TN, only various forms of relief.
Am I feeling sorry for myself? You're dam right I am. I couldn't even get a kiss and cuddle from my eldest grandaughter today.
Eight out of every 100,000 of the population suffer from TN. How lucky am I?

Update

The planned trip to London came and went without any great incident. Much to my surprise, I have to admit I loved it. I've always though of myself as a hills and heather type. We did five days of the full on tourist bit, I've never been as tired in my life. Prior to arriving at the Crystal Palace site, we had a couple of days at Cirencester in the Cotswolds. It's now on my list of places to revisit, even if it never stopped raining the whole time we were there.
I'm now grandfather to another girl, Beth, born on the 2nd September, weighing in at 7lb 12oz. She's a real beauty.

GOING TO LONDON

TN has settled down completely and I've had no pain for around a month. This may be down to the fact that I've decided to maintain the dose of Tegretol at 1200 mg's in 24 hours rather than reduce it and take a chance of the pain returning.
I'm leaving for a couple of days in Cirencester on Thursday and then a week in London. I'm one of these anti-social types that tows a large caravan all over the coutry when the roads are at their busiest.....I pay my road tax you know!!!! The London site is at Crystal Palace so it should be quite an adventure getting there. I'm really looking forward to the break.
My new grandchild will be born on 2 September....pretty excited about that. My grandaughter refuses to entertain the fact that the new member of her family could be a boy. She simply says "girls are the best" when you say it could be a boy.

My Trigeminal Neuralgia 11

Things have been going pretty well since my last post. I still get episodes of intense pain in short bursts and for the first time since I started taking Tegretol, around 6 years ago, I can really feel it working keeping the pain largely suppressed. God knows how bad it would be without the medication. 1200mgs a day, which I’d rather not take but, hey ho!! I attended the pain clinic at Crosshouse Hospital on Thursday 8 July where I discussed the last few weeks with Consultant Anaesthetist, Charles Martin. To be honest, I felt a bit of a fraud because there was I in the waiting area with people who were obviously in great pain while I looked a picture of health and happiness. I’ve never thought of myself as having an illness, more of a victim. Doc Martin pretty much agreed with the medication and underlined the fact that Tegretol is the best treatment in most cases. He also discussed surgical options which I’m not keen on at this time, but if the bouts of pain increase and become more prolonged, I will seriously need to consider surgery. My wife says I’m daft enough without people poking around in my brain.
Onward and upward.

My Trigeminal Neuralgia 10

Pain still there, but now managable. Only downside at the moment is the drowsiness caused by the medication. Hope to start reducing meds further this weekend.

My Trigeminal Neuralgia 9

Pain scale 0. Meds reduced. Still tired, but feeling close to normal.

My Trigeminal Neuralgia 8

Pretty good today. Pain level definately heading in right direction. Just a slight reminder on wakening and nothing more. Fingers crossed.

My Trigeminal Neuralgia 7

Doctor happy with the way things are going. He advised me to start cutting down on medication and gave me a prescription for emergency supplies to take to Portugal. Visited my parents and even managed a haircut this morning which is a real positive. Sorry if this is a bit mundane, but it helps me.

My Trigeminal Neuralgia 6

The pain, although still there, can best be described as mild. I will start to reduce my medication today and see how I get on. I've a doctors appointment this morning to discuss meds and the fact that I'm going to Portugal at the end of this week for 7 days i.e. what will I do if this happens with such severity in Portugal? This blog is more for me than anyone else.

My Tregiminal Neuralgia 5

Pain still there on waking this morning although not of any great level on the pain scale. Medication reduced and back to bed for another 5 hours. Still feeling drowsy at 4:30pm and have mild bouts of pain which is almost nice compared to previous episodes.

My Trigeminal Nuralgia 4

Little or no pain so far today although the medication is still knocking me for six. I slept to mid-day again.

My Trigminal Neuralgia 3

I’ve had to revise the pain scale because it went way beyond 10 yesterday. After the previous post I took to bed due to the increase in pain which was all centred around my left eye. Any movement of the eyelid or eyeball was rewarded with 40,000 volts. Try not moving your eyeball or lid when you know if you do it will be result in severe pain.
My wife called my GP late afternoon on return from her work. He attended almost immediately and prescribed steroids and anti-inflammatory drugs. While my wife attended at the pharmacy, the pain disappeared on its own, prior to me taking any of the new drugs. There was no way I was going to shout “I’m cured” on the basis of now having no pain in my head. One of most depressing side effects is the absolute terror, and I mean terror, you feel when you have no pain, is that the pain will return.
Anyway, steroids, anti-inflammatories and Tegretol taken with food last night and a good night’s sleep. I awoke at 6am, no pain, which did not last long. It was not as bad as yesterday, but bad enough to get my attention. So, another round of drugs and back to bed. I slept for a further six hours and on wakening, the pain was still there and then, as if by magic, it disappeared; to be replaced with the terror of wondering when it will return.

My Trigeminal Neuralgia 2

I woke up this morning to crushing pain, the worst yet in the current episode. Funny thing is that it doesn’t prevent me from sleeping. I just start to dread waking up (can you do that?). Maximum dose of medication, not a jot of difference other than I now feel as if I'm watching the world through a net curtain. I couldn’t even manage to make my way down the stairs to open the door for my father. If I sound as if I'm feeling sorry for myself, it’s because I am. Come on man, pull yourself together.....if only I could. I am sitting in front of my PC trying not to blink or move my head because both are triggers. Walking or even standing is an adventure which can leave you stranded between two chairs for some considerable time. If only I could make it to the fridge, but then I remember that eating is impossible, not that I’m wasting away to a shadow. I try to remind myself that I have so much to be positive about, but the pain quickly dispels all positive notions. You have no idea how long it took me to type this. Pain level today is 10/10.

My Trigeminal Neuralgia 1 (Google it)

Having suffered from this most horrendous and debilitating of conditions for around six years (I am never completely free of pain), I was always pretty positive in that when it was at its worst, it only ever lasted a few days. However, on Friday 29 May, the pain and sensitivity increased significantly for the first time in many months. If truth be told, I knew the pain had been getting worse for some time, but the consequences of a phased increase in my medication (Tegretol) usually mean that I become some mutant form of zombiefied Muppet and not a very nice person to be around (just ask my wife). Add the fact that I was on a weekend break at Moffat with my caravan and did not have enough medication with me, meant' I had a full day of excruciating nerve pain in my face. On a scale of 1-10 it came in somewhere around 8-9. The following day I felt well enough to drive home and pick up the pills and return to Moffat. I then increased the dosage too quickly, I suppose overdose is the technical term, which meant' I couldn't even walk in a straight line, speak without slurring etc. and guess what, no pain relief!!! The pain has subsided somewhat over the weekend, now around 4-5, probably due to a more measured and sensible approach to my medication. Its still bloody sore.

I try to remind myself that when someone says 'I know what its like' they are only trying to comfort me and don't deserve to be verbally abused.

On the upside, no one died. Onward and upward dear friends.

JANUARY 2010

January was a fairly eventful month due to illness (not me) and the heavy snow that we experienced in the early part of the month. A planned weekend in York also went down the tubes (remember Globespan and Grantown on Spey) due to the A66 being block by snow so I should probably warn you at this stage that I am intending to have a break in Ardgarten sometime towards the end of February.
The house next door to me has just been sold so I now have the uncertainty of wondering what my new neighbours will be like. I'll find out in 12 weeks either way.