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!!