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Rob's Diary - Week 3


Week 2 was difficult to say the least. I had to face up to the reality of the illness especially when I found out more on the Internet. This was not going to be a quick week off work in bed with a bag of crisps and the TV remote.

The dizziness was incredible. Dizzy to the point where even opening your eyes would make you physically sick. And don't even mention the rollercoaster taxi adventures. Lights, motion, noise, people in fact any kind of sensory movement was exaggerated and warped in an almost dreamlike state. The ear damage was beginning to take it toll.

It's at times like this that you realise the true value of family and friends. You think are a big boy who can cope with everything. Nope, how wrong you can be. It's back to basics and relying on everyone for everthing.

This week the nausea starts to fade but the longer terms effects of Ramsay Hunt syndrome start to become apparent and I need to face the facts.

Day 15 - Wednesday 19th February 2003

Symptoms are about the same but the extreme nausea has been stemmed a little by taking the Cyclizene early in the morning.

I still feel very sick and dizzy all day but I have not actually been sick. The pains in my head have pretty much gone now which I think is genuinely true because I'm not taking any painkillers at all.

The only way I can stop the acidity and sickness is by eating biscuits as a snack and rice as a basic starchy meal. I'm drinking bottled water but even this is making me acidy.

I've kept my eyes closed most of the day to keep dizzyness away and slept alot too for the same reason.


Day 16 - Thursday 20th February 2003

Woke up early and felt very dizzy and sick. I must eat immediately or else I will be sick so there's a store of ready cooked rice and peas ready to heat up in 2mins in the microwave. Even trying to get down the stairs is a nightmare as I feel completely drunk and dizzy all the time.

Other food which really helps is Jacobs crackers, Rich Tea biscuits, toast, rice and peas and the magic tablets... Polo mints! The only thing I want to drink is water because besides the acidity of anything else the numb feeling in my mouth means that I can't taste anything. I've tried to drink some Lucozade but I can only get a hint of the taste in the left of my mouth. When I move it to the right all I can feel is a mouthful of frothy water. No flavour at all. Strathmore flavoured water was a good option a few days ago but now it just churns up the stomach acids and tastes of nothing.

One highly recommended practice is to use Germolene ointment on the ear sores. Scabs, lesions and blisters seem to heal in a fraction of the time and almost leave without a mark. Even better is its ability to all but eliminate itching.

Towards evening I feel much better but am still very unstable on my feet to the point where I'm walking with my arms stretched out in case I fall and also because I need them to balance. This is taking the Micky now.

My mum and my sister came over in the afternoon and I think this really did lift my spirits. It felt as though I had something to aim for and to look forward to. They brough loads of little gifts to cheer me up and best of all some home cooked food.

Conjee is a Chinese meal which is made out of 'overcooked' rice in excess water. It is savoury and has the consitancy of a thich soup. You can make it with meat or other ingredients but look it up online because different people have different tastes. Essentially you boil half a cup of rice with about 3/4 pan (about 8inch saucepan) of water and throw in say some bacon ribs for flavouring although chicken is good too. Simmer for about 1.5 hours stirring every 15 mins so it doesn't stick to the base. A bit of flavouring like MSG / salt / pepper enhances the taste but the amount is up to personal preference.

The other magical meal she brought over was Scouse. Essentially a stew which has been cooked so long as to turn the clear soup into a thick mush! Ask your gran and she will tell you about it. If you want to make it yourself try 1lb shin beef, 1lb lean stewing beef, potatoes, carrots, 1 onion, salt + pepper and 2 sticks of celery. Chop up the beef and onion and simmer for an hour. Add some salt and pepper and then throw in your chopped up potatoes, carrots and celery. Leave this to simmer for another hour or so. If you prepare it the night before the flavour really does marinate through the whole meal. Heat it up the next day and you will have a truly mushy bowl of Scouse. Brilliant for people like me who can't open their mouths at the moment.

She also bought me an intra-sonic face massager which has a few different heads and a variable speed setting. This is supposed to be useful for stimulating the nerves but for now my face is a little swollen so further agitation isn't really recommended. I've got a hot water bottle to lay on to relax the face but this has made me sleep almost immediately and I nearly missed the rest of the doses of medication!

One other major advancement is that I have been able to sit at the PC and type. Only a few minutes but at least I have been able to help with work.


Day 17 - Friday 21st February 2003

Woke up today with the usual dizziness and I'm feeling quite acidy. A quick bowl of Congee has done the trick and a glass of water. It's strange that I am still feeling acidy after food and water but I suppose it will just be time before that goes. For now it's back to the Polo mints. Speaking of which, do you know that sugar free mints have a mild laxitive effect? Hehehe. Good to counter the steroidal blockage!

Hospital appointment at 2pm brought the usual rollercoaster adventure. The taxi down there and the movement, lights etc made me feel ill again. Unfortuntely, another patient had a nosebleed for over 2 hours so the experience was prolonged.

When I eventually got into the consult room I fell back onto the filing cabinet because I was so disorientated. The SHO gave me a cyclizine to help me and then carried out the exam. The virus seems to be clearing up with the antivirals so I should complete the full course. I was also advised to reduce the amount of prednisolone to 20mg four times a day but to take the cyclizine as I felt necessary (up to 2 times a day).

Took a while to settle down after arriving home but I felt much more comfortable after a while. I tried another session on the face massager but there was no improvement. Just a bit of relief as the vibrations relieved the slight itching in my ear!

The best part of today must be the bowl of Scouse. The first proper meal I have managed to eat since the beginning of this whole ordeal. Problem is that I can't taste foodstuffs too good at the moment. The mouth is still numb and the tastebuds have deserted me.

The problem with eating is that the moment I feel sick and acidy I must eat immediately or else I will be sick. It's so difficult to manage at the moment so food has been prepared for quick heating in the microwave.

To be honest without Jo's support throughout the whole of this I don't know if I could manage. She has done everything for me and her family too. It's at times like this that you realise how fragile you are. No more of this "indestructible" rubbish that you parade when you are young. You really are nothing. You know when people say it's downhill after 30 well it certainly rings true at the moment. It has been 21 days since my 30th birthday and I'm on day 17 of this illness. 3 or 4 days of "nah it's just the same as being 29" and then BANG... a mule kick in the face and stay down for the count cowboy. I've never been in this position before. Always been strong. Helped others. Shrugged off colds. T-shirts in winter. Wake up this is real and it sucks.


Day 18 - Saturday 22nd February 2003

Feeling alot better today. No sickness really but I have taken a cyclizine just in case especially as the acid is the root of all evil.

Actually the acid has dropped considerably today so I have tried some Vimto cordial with the bottled water. This has gone down well but I have taken a second cyclizine to be safe. Even though this tablet is supposed to help with the dizziness aswell I have noticed that my drunken stupor is still there. Strange. So I am stumbling around, with my arms out for balance and more importantly to save me if I fall!

I tried the most stupid thing tonight. I went outside in the dark and wow... what an experience. Talk about nothing the focus on. Almost immediately I lost my balance and found myself clutching the door frame. This is the weirdest thing in the world. I guess it's because there are so many different distances to focus on and so many unclear items. Note: I don't recommend doing this again for quite some time.

Ordered a take out tonight. Had a Thai meal with an aromatic crispy chicken starter. This is officially the first meal i have eaten since the illness started and I found it difficult to eat because of the lack of control over the right side of the mouth. I am pretty much pushing food through half a letterbox and when the food lands it's tasteless and my mouth is numb. Great.


Day 19 - Sunday 23rd February 2003

Just unstable today. No sickness even though the cyclizine should have completely left my system so there's another milestone. I didn't get any breakfast till 11am so I suppose the acid-hunger-sickness cycle may be breaking.

I've managed to do some work on a couple of websites today although the right eye is still a bit of a problem. I still can't close it so it dries and gets quite strained.

I even had a few glasses of lucozade today to test the acid problem and so far I haven't had any ill effects. The only thing is that the lack of taste gives it the sensation of swilling frothy foam water in my mouth. Quite disgusting really so water is back on the menu for a while.

Had some veg and gravy for tea tonight and it went down well. Now I don't know if the lack of flavour has anything to do with it but I find that I am constantly hungry. Straight after tea I started munching on snacks. Polos still good.

Finished the course of Aciclovir antivirals tonight. One down one to go.

My right eye is really hurting now so I must sign off. It feels that someone has been pushing their thumb against my eyeball. Not good.


Day 20 - Monday 24th February 2003

Woke up feeling drunk as usual but still no sickness or pain so it seems as though that's finally over. The Germolene has worked miracles and most of the lesions on my ear have healed quite well. There has been little in the way of itching too.

Went back to the hospital for a 2pm appointment with ENT. The taxi ride was the usual rollercoaster adventure and as expected I felt quite dizzy when i arrived at hospital. The lights, sounds, people moving about etc made me feel worse. This time we let them know when I arrived because of my symptoms and the specialist saw me immediately. She recommended tailing down the course of prednisolone over the next few days and said that the virus had all but gone. On a negative side she mentioned that the drunken feeling may last for a few weeks or 6 months! Hahaha. Not funny.

She advised me to come back for another check up after 2 weeks and also prescribed some more cyclizine in case the dizziness came back. She said that there were ways of countering the balance problem but when the drugs wore off it would be much worse! Just cope with it. I don't think it will but at least I have a reserve of tablets. After getting home it took a short while to settle but I am reasonably comfortable now.

I spoke to work today too and all I really want to do is to get back into the project as soon as i can. There's so much happening and so much to sort out. Although it's at an early stage it's quite exciting. I can't believe that i have been hit so hard at such a crucial stage of a role. They are going to keep me posted and if i can manage to sort myself out i hope to be back quick time. Unfortunately when I start looking up phone numbers, make calls and try to ease myself back into things I start feeling quite ill again. I'm sick of the doctor's advice about resting and not thinking about work but I suppose if I am to help myself in the long run I have to listen to their words. I'm still going to do a few bits and bobs but don't tell the doc.


Day 21 - Tuesday 25th February 2003

Woke up at 7:45 for the MRI appointment. What a dumb time to wake up especially feeling like this!

Turns out that the MRI wasnt an MRI after all but just a consultation with the neurologist. "Strange" is the NHS system especially when they phone you a week before to say that there has been an MRI cancellation and "would you like to take it".

The consultant was really good. Absolutely thorough in his diagnosis, listened intently and prompted for details that were not even questioned by the GP or the ENT SHO.

I should really point out the importance of keeping an absolutely accurate account of your symptoms, feelings, sensations, experiences etc because the slightest incorrect detail may have very different consequences. For example, if you say that your face is numb then Ramsay Hunt Syndrome is quickly questioned. The impact of damage to the 7th nerve is purely motor based which means that movement and NOT sensation is affected. You cannot blink, smile, frown your brow etc on one side but you can tell if an ice cube is place on the affected cheek. For your benefit be as specific as possible because you would be surprised how GPs etc can use the wrong adjectives in their notes.

The consultant has told me that there is no real way of accelerating the paralysis healing process. Steriods are the usual course but there is now a debate on their effectiveness in Bells Palsy or Ramsay Hunt cases. Of course the antivirals will help eradicate the Herpes Zoster Oticus but the other symptoms like vertigo, tinnitus, hearing loss, taste loss, dry mouth and eyes are part of the waiting game. It could be 4 weeks or it could be 8 months. That's the reality and unfortunately there are extreme cases which are even longer term. The most important thing is a positive mental attitude and a determination to beat it.

After the consultation we walked (or stumbled) towards the McDonalds for double bacon and egg breakfast meal. What job getting there though. It was about 200 yards away from the medical centre but walking along the pavement next to morning traffic and under a railway bridge which was being "white lined" by workmen was nearly enough to blow my head off. I don't know what kind of machinery was used but it was much louder than the planes I have heard on take-off at the airport. Surely this noise exceeds all kinds of EU levels? Anyway, the confined tunnel under the bridge amplified the sound to the point where my vertigo almost created a visualisation of the noise in my mind. It's the weirdest thing 'seeing' sound but I can only describe the noise as making a swirling image of the road ahead which rushes towards you and then rushes away from you. Freaky dreamland stuff once more.

Today the lesions and scabs have almost completely disappeared from the right ear although you can see a slight redness where the new skin is exposed. Again Germolene is magical and proves it worth with the lack of scarring and almost no itching. The drunkeness is still a big part of the day and proves an obstacle when trying to walk around outside.

At least there is still no sickness or profound dizziness on a normal day... where normal means that I dont travel in taxis or see loads of faces in the bright lights of a hospital. That's just like being in some kind of nightmare where faces and sounds warp around you from different dimensions. Not as intense but still quite disorientating.

I have been able to do some web work today and make some business calls although my right eye became extremely sore due to the inability to blink. Imagine staring non-stop at a 19" monitor with dry eyes held open by matchsticks! The only way i have managed to write this update is by taping the eye shut with the micropore tape and using some drops earlier on. Not good for left eye strain but at least i can enjoy the PC for a bit.

Eating is still quite weird. I drank some more Lucozade today but again it just felt like I had a mouthful of frothy foam. No taste on the right hand side of my mouth and still the numb 'bonjela' toungue. Its also a bit strange that when i do get a meal i still feel hungry. Is it the steroids? Is the lack of taste? Not sure but certainly strange.

I have been able to drink out of a bottle for a good few days now but I still can't puff out my cheeks and hold a 'Pob' face. The right eye is closing with the left eye a bit better now but i dont have any independant control yet so wI cannot wink. The brow is still flat, nostril still unmoving and cheeks still still!

I've done another session on the intrasonic massager but I dont really know what the benefits will be. It just feels kind of tingly with all the vibrations but to be honest the real benefit is buzzing it near my right ear. Yea, although the Germolene is good for the itching this buzzing almost gives you that much needed scratching relief!

I have started to cut down on the Prednisolone today. I am down to 20mg three times a day now which is one less dosage per day.


week [Intro] [1] [2] [3] [4] [5] [6] [7] [8] [9] [10] [11] [12] [13] [14] [15] [23] [24] [25] [41] [44] [120]



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