Not looking good :(

Ok...so it's been almost the same amount of time with higher pain levels than I had almost pain free, following my last procedure! 

I had 2 weeks and 2 days with mostly pain level of 2 or 3 but since then it is between level 4 - 6 daily. That is basically the same as it was before the operation on 8th November. 

How can the same procedure only give me such a short time, when before I got 3 months benefit!!? 

I am not really looking forward to seeing my consultant next Friday, for my follow up appointment. I know he will understand and begin to think where we go next, but it's such a shame that it just hasn't worked the same. He held this procedure up as being a bit of hope for me, and for others, as I know he is recommending it to others in the same boat.

I know it's no one's fault but I just want to get this sorted. Others really don't get that this is unpredictable! No one can guess when I will be in pain again it whether a procedure will work for a set amount of time. No one can even tell if the stimulator we are fighting to get approved and funded will even work for me! 

I find it so difficult to get my head round this!

I either seem to bury my head in the sand and think I can still do everything I always did and that my future can still be planned the way I always thought it would be .....or, I get a sudden realisation that I can't move forward, nothing is the same and people don't seem to understand that it is actually depressing.

If I felt this way more often, I wouldn't be able to continue. It's better that I am slightly in denial and believe I can be the person I was always meant to be! I don't need to change my job, or go part time! I don't need to stop doing the things I enjoy! 

But who knows what my future holds!!?

For now, I will take each day as it comes. Not think about my future changing but strive to keep my life as normal as possible and the same as it always has been. 

Occipital Nerve Pulsed Radio Frequency Ablation and Suboccipital LocalAnaesthetic Nerve Entrapment Release

So.....I finally get a chance to say how this repeat procedure went!

To be honest, I kind of expected it to be the same as last time (back in June) and so I had no worries or concerns, apart from knowing that yet again this is a temporary solution!

On the day (8th Nov), as usual, I am taken down I theatre. I am the first procedure of the day and so there was no hanging around. I am given diazepam through the cannula in my hand to relax and then wheeled through into theatre. 

In there, I am scooted onto my front on the bed and the theatre nurses and Mr Patel all set about attaching me to machines and earthing me with a sticky pad on my thigh. I am asked to point out the point on my head where if pressed it causes the pain, I am then given some Propofol as sedation and quickly begin to feel woosy!

All I can remember is the needle being inserted for the PRFA part of the procedure and feeling the usual pressure but no really much more. I'm not sure if even remember the next part of the procedure, where they went through the muscle to inject local anaesthetic. 

I next remember being shifted into the trolley bed again and wheeled out to recovery! In there I felt fairly awake and without being asked was given IV paracetamol, which usually helps a lot. I didn't feel pain just uncomfortable and although my head was completely numb from the anaesthetic, it felt like it was swollen and delicate! 

After going back upstairs, I felt ok, just tired. I had a decent amount of rest before being allowed to eat!

Then went home more or less as soon as I was allowed, sometime in mid afternoon.

My recovery was as expected...the ON pain was mainly gone and I was dealing with the achey stiffness from the actual procedure itself! Paracetamol and ibuprofen was ok in helping my stay comfortable. 

After a few days this acheyness eased but I was unable to list heavy things or sit at odd angles without feeling sharp pains in my neck.

This eased after just over a week and so now I am feeling pretty good!

It is now 2 weeks after the procedure and my ON pain is at a constant low of about a 2 on the pain scale. This means I only occasionally feel some minor stabbing pain on the right side of my head or at the back. I think I could live with this, as I can get on with things without thinking that I will be affected by certain activities.

I now hope that this lasts at least as long as the last time...which was 3 months!

That will get me through Christmas and beyond! 

My only thought is that this time I will be at work for much more of the first 3 months following the procedure, as I'm returning full time on Thursday (just under 3 weeks post procedure). Then with 2 weeks off for Christmas holidays that means I will be really put to the test in the New Year! 

Guess no one can tell how things will go and only time will tell!!!!

In a way, I'd prefer this to wear off early in the New Year, as long as the funding has been found for the stimulator, as if just want an end to this now! 

I'm putting things off and unable to plan without knowing what I may need next and when that may be! 

Next time I post, I'm guessing it will be to update you all because I'll be feeling ON pain more again! 

So Merry Christmas to you all and see you in 2014!!

(It's an even year....so that's got to be a good sign!) 

UPDATE: 26th November
Uh oh!!!! Knew I was tempting fate. NEVER expect positive things...I should know better.
The last time I had this procedure I was down on my life and not expecting good things from the procedure. He only difference this time was that I was positive and hopeful and expected to be back to work in no time!!!

Been in much worse pain yesterday and today :(
Gone from pain level of 2 right up to 5! It wasn't like I did a lot yesterday....well, nothing any harder or stressful than work anyway! Only did a bit of shopping and made the Christmas cake!!

The past few days the muscle on the right hand side at the back of my neck has felt really tight but it suddenly got much tighter and nothing seems to be relieving it! It is only because if this that I can see why the pain has got so much worse! I have been pressing my head at the usual area for a trigger point for my ON and I think it is back. This is always the sign that my consultant asks about when I go and see him. If there is a trigger point he always seems happy to go ahead with another procedure!

I think I'm going to have to see how I go over the next few days. Not going to see my consultant for the follow up appointment until 13th December!

Next plan

After seeing my consultant neurosurgeon the other day, it seems he is still fighting the NHS for funding for the neurostimulator implant. The only chance I seem to have of permanent control of my pain, and therefore other symptoms.

So....the only choice now is a repeat of the last operation that I had; Pulsed Radio Frequency Rhizotomy and Local Anaesthetic Injection Into Muscle.

At least I know the recovery isn't awful and not too long BUT it still means my pain control will be temporary :( and so my life will still be controlled by ON.

On one hand I am feeling positive, as the last time I had this my pain was lowered like never before and for longer than anything else I have tried.

But on the other hand I can't keep waiting for things to wear off or run out and for me to be in extreme pain again! 

I guess only time will tell how long this procedure will last me for but I am almost certain that eventually it WILL end and I'll be back to square one once again!!! 

Looks like the time is up...!!

I'm sorry to say that I think the pain free time I was enjoying seems to be over!

For over 2 weeks I've been suffering higher pain levels, dizzy spells and tight neck and shoulder muscles! :(

I'm battling with work still, but the tiredness and stress are not helping whatsoever!  

It's so unfair!! Other people who had the same procedure that I had, had been pain free or lowered their level of pain for a year or more!!!

Typical me, it's only been 3 months!! Why me!? Why can't I seem to find anything that lets me get on with my life!!? 

I am determined not to let this affect my attendance at work as badly as the past 2 years. It's always by the end of September that the ON gets too much to work. I want to make it to half term at least!!! I'm half way to the half term break...I'm going to keep battling through and see how I cope!!!

Not sure what to do with my life anymore :(

This is it.....!!!!

It's 6 weeks on from my last procedure and I am still feeling pretty good!

I didn't want to tempt fate by adding a post before now, as I was feeling so good! In fact, undoubtedly the best ice felt for years! Even other people have commented that I look 'different'....'better'....'have that twinkle in my eyes again'! It's so good to hear that actually I didn't look 'right' when I was in so much pain.

After seeing my consultant a week ago, he was so relieved. He says I was the first person he had performed this procedure on, but that I should now forget ON for the time being and ..."to go off, get married and have babies!!"

If the pain returns then I can have a repeat of the same procedure and if need be, would still be a candidate for the permanent nerve stimulator! 

For now, I am happy with that!!

I'm hoping it doesn't return in full force, but as the pain has totally gone but is just extremely low, then that may not be the case. That's ok, as I know there is still a plan ...but for now I shall try and not think about it.

The blog may be fairly quiet from now, as in order to move on with my life I don't want to dwell on what was or what might still be!

For anyone reading this blog, you can see there is hope!

New procedures are being discovered and you can get your life back in control!

All the best to all my followers!

I'll report back in a month or so to let you know how things are going by then.

Pulsed Radio Frequency Rhizotomy and Local Anaesthetic Injection Into Muscle

It is only two days after my operation and I am actually feeling good. Obviously a bit stiff, achey and tired but overall my head pain seems to have gone!!!! That is something I barely get the chance to say anymore! 

The procedure was bearable. As always I walked down to theatre and a cannula was placed in the back of my hand. The anaesthetist gave me some diazepam to settle me (not that I seemed anxious) then I was wheeled into theatre and asked to lay face down on the bed. 

I then had a million hands putting the earthing pad on my leg, giving me oxygen, putting pads on my chest, all before my consultant spoke to me. I pointed out my most painful trigger point, which was marked with a pen. He then made a few measurements before inserting the needle, adding some local anaesthetic and then checking if the PRF was in the correct place by the nerve. This time, I'm not sure it was! I felt immense pressure on my neck, like someone was pushing me down with their thumb. The needle was obviously next to the muscle instead. A second needle was inserted and checked. This one was in the correct place. This one was turned on for 3 minutes, followed by the other, after changing its position, for 6 minutes. I now can't remember much more but was told that the same needle would inject longer lasting local anaesthetic into the muscle at the facet joint where the occipital nerve begins. Next thing I know, I am being wheeled out of theatre into recovery. I know some blood was wiped off my neck at this point, but I was awake despite feeling do tired.

I am only in recovery for a short whole, maybe 25 minutes! A paracetamol drip is set up, but I feel ok. I didn't say how my pain was, as I couldn't really feel anything. 

I'm back upstairs before I know it! And lunch arrives! :)

My head stayed totally numb for the whole day. Apart from my neck muscles feeling rather achey and a bit of dizziness and tiredness, I feel fine!

This continues for the best few days! No pain! Just aches. I can't actually believe how good I am feeling! Let's hope this lasts! 

So now I have my hope back for a decent near future! Summer should be good and I will enjoy it as much as possible!

For now I will forget that it will return at some point....and that I can't think too far ahead. I will try and enjoy the experiences that come along, particularly with the few people who have shown that they are true friends. Those are the ones that have always been there, through it all! Visiting, calling, texting, just to make sure I am ok. Thank you!

Plan E

Ok! Plan A and B are now never going to happen! 

Despite my consultant writing a letter to state that occipital neuralgia is synonymous with chronic migraine, they are still saying it is a risk. Apparently the NICE guidelines have a clause in there saying that it is experimental!!!! How annoying!

Surely EVERYTHING is experimental at first, until people have it done and they can tell that it works! Ridiculous!! 

So, therefore my life is left at crossroads AGAIN!

I am on the NHS waiting list to see if there is any special funding for the stimulator inplant. So I have to wait that out now, until I find out my chances of plan C getting a look in.....or not!!!

Of course, I will now have another smaller procedure that will give me an unknown amount of relief, but this is still temporary! I will yet again not know when ON will come back and knock me down!!! So, I can't forward plan my life still!! Grrrrrr!!!!

The temporary procedure is tomorrow! I will be having PRFA to the occipital nerve and injections into the surrounding muscle, in the hope to decompress the muscle away from causing pain to the nerve. This is a new experience for me and my consultant but apparently can give good results and a decent amount of time pain free! We can only see, I guess.

I usually feel really positive when I'm going into hospital for a procedure but this time I feel different. It's hard to describe but I don't see my future anymore so I can't feel the same. I feel like it's just a cover up....a way to shut me up for a little while.

What next......?!!

Well...it seems that there are now a few plans in place to gain some kind of hope for my future!
All I want is normality....the chance to plan things in my life without the worry!

Plan B: My consultant has now written a letter to the medical team that denied me the stimulator implant, to state that occipital neuralgia is a form of chronic migraine, as having a chronic headache/migraine is what ON is!! This could put Plan A back into the equation.
I don't hold out much hope on this plan, but its worth a try!

Plan C: I have been put onto my consultant's NHS waiting list, but this also needs funding to be applied for. He says there are 100 people currently on the list waiting for funding for different conditions....so I bet that's never gonna happen then!! :(

Plan D: If there isn't any funding available in Bristol, then he will transfer me to a different area that does have funding. I mentioned St. Thomas' INPUT pain management course, as I have heard about this through the UK occipital neuralgia support group that I set up on facebook, and it is a possibility if need be.

So..................in the meantime, it looks like I will be getting the temporary procedure that involves PRFA as well as injecting local anaesthetic in the muscle, in the hope of decompressing it away from the nerve. Apparently this will be next week! I hope so, as I cant go on like this. I feel like I am not who I used to be. I used to strive to be the best I could at my job...and now I am just happy to be in the background and can barely be there from day to day. It is an acheivement to make it though a day, let alone a school term.

Stimulation operation denied :(

Grrrrrrrrrrrrrrrrrrrrrr!!!

I couldn't write this yesterday, as I was too upset and too annoyed but it seems that I have been denied approval for the permanent stimulator despite everything being done to get it approved and my consultant stating that this is what I need next!!!!

Apparently, the funding hasn't been approved as NICE state they have acknowledged the procedure for chronic migraine and not occipital neuralgia. So, why oh why did my consultant say it had recently been acknowledged! Getting my hopes up when actually the research that has been studied is for people suffering chronic migraine!!! That is NOT what I have so I can't really be angry with the people who have decided not to fund it BUT it leaves me with nothing!

I had been given a hospital date...told that everything will be done to back me on getting this gone....spoken to friends & family, as well as to my work about it....had my haircut and treated in preparation for not looking after my hair for a while...and it has all been utterly pointless!!!!! :(

Back to square one!

I now don't know what my future holds.

What do I do about work? They only thing that was keeping them happy was that occupational health said I would probably be back 100% after the stimulator operation.

How do I begin to plan a future...a family? I'm 33 now and was thinking that in a year I should be well enough to start thinking about these things but now how can I plan that sort of change in my life when I can't cope most days!?

I just have lost my positive outlook on all this right now! I can't see past living day to day.

Whatever I can now do to help my pain, no one seems to be rushing to answer my calls about the next steps! These people who work as PAs for consultants have no idea with the lives they hold the key to. I need answers ....and I need support!

I am so angry!

This has helped to get some if it out but who knows what my future holds now!

I'll update on the 'alternative' plan whenever it is I end up finding out about it!!! :(

NICE acknowledgement of occipital nerve stimulator implant system

Great news!!!

Finally NICE (National Institute for Health and Care Excellence) have finally acknowledged that the stimulator implant system actually works to help people suffering from ON.

The system has been acknowledged by them for spinal nerve pain for years! Not sure why its taken them so long, to be honest! 

The guidance NICE give, as well as the data they collected during their research, makes an interesting read.

Here's the link if you're interested;

http://guidance.nice.org.uk/IPG452/Guidance/pdf/English

The first baby steps towards the nerve stimulator

After seeing my consultant the other day and thinking we would be discussing the nerve stimulator implant, I came away rather annoyed and deflated!!
As he had met up with another expert of ON, from Holland, he had an alternative for my next procedure! To do PRFA to the occipital nerve and then to inject local anaesthetic into a pocket in the muscle, so it will decompress the nerve away from being tangled amongst the muscle it runs through.
It sounded great...well, that's if I hadn't been battling this for so long and now needing my life back!

So after much discussion with loved ones, I emailed my consultant to say that I feel the stimulator would suit me better, as the other procedure is still only a temporary fix. Apparently it could last up to a year pain free! That's just not good enough for me now! Six procedures on...I need to be in control of this!! I was told he would call me for a telephone consultation.

This is when I truly realised that the stimulator was the right choice for me! I was so nervous about the phone call. Hoping it would be the go ahead.

So when he finally and said he totally agreed with me and my thoughts, I was over the moon! Finally a chance to get my life back...be able to plan ahead...to STOP feeling pain, day in, day out!
He questioned if I realised that I would have an implant, which of course I do! I've spent so many hours googling and reading people's blogs. I've seen all the hideous photos. I've even spoken to my hairdresser for the past year, to plan on growing my hair long, in case I need to cover up if any of my hair gets shaved off!
Still, despite all this there is no choice. If I want to lead the life I should have had, I need to do this!

Only problem now....is getting it approved by my medical insurance company!!
Now this is now down to my consultant. He is now writing reports to share my history and about the procedure, making it clear I have tried everything with only short lived benefit.
Also, only 3 days ago, NICE have now acknowledged the stimulator for ON not just chronic spinal pain. It's all positive so far.
My consultant said he'd back me all the way, so fingers crossed now!!

Gabapentin and Pregabalin

Although I've tried many different types of medication, from painkillers (that just do not work on nerve pain) to muscle relaxers, such as amitriptyline; the most common drugs that are likely to help nerve pain are gabapentin and pregabalin.

For some reason my GP never thought to prescribe these....surprise ;) but my consultant suggested I give them a go, especially while the procedures just don't seem to help my pain level for long.
Initially, probably because I had googled them a bit too much, I was very apprehensive! Mainly because they both suggest weight gain as a common side effect....as I had recently lost two stone, I knew this would make me even more unhappy. I also hate taking strong tablets, as I've had many that have made me sick!

Reluctantly, I went ahead and tried gabapentin. I started on the low 300mg dose which doubled day by day to 900mg. Very quickly I felt terrible on these drugs. I was dizzy and felt sick. I even spent one day unable to eat...but I battled through it as I wanted to prove I had properly tried these drugs.
After a week I began to feel kind of normal, although I couldn't notice any improvement in my pain level. When I went into hospital for my PRFA of nerve and facet joint procedure, my consultant suggested upping the dose to 1200mg. I had no idea what a strong drug gabapentin was until I realised I would now be taking more than cancer patients do. Ridiculous!!!

A few weeks later, which was only into week six of taking gabapentin, I suddenly developed a rash on both of my legs on the inside at knee level. This didn't go away or get better over a few days, so a trip to the doctor confirmed that this was some kind of reaction to the gabapentin. In a way, I wasn't sad to have to stop taking it! It didn't work anyway.... and my sudden stopping of taking it confirmed that, as I had no withdrawal symptoms from not coming off it slowly.


Rash on first day

Rash on second day

It was then suggested that I try pregabalin! Apparently it has less side effects...though that doesn't ring true if you read the leaflet!
I started on the dose 150mg per day, which went up to 300mg after a week. When first taking it I didn't feel too bad. I was surprised, so continued taking it, in the hope it may just help me.

After four weeks there seemed no change in my pain levels. My consultant suggested I up my dose by taking one extra 75mg tablet in the evening. This took me up to 375mg per day.
The first evening, after a couple of hours I feel extremely dizzy. That first nights sleep was the worst ever, waking up every hour!!!! The next day though, I felt back to normal. So thought I would battle through the new dose, hoping I would get used to it soon enough. Yet the next evening the dizziness returned, almost exactly two hours after taking the tablets. It wasn't until that next day, when I still felt dizzy that I thought the new dose had to go! How could you live like that??

So it seems the pregabalin, for me, is also useless.
I'm back down to 300mg per day now and am hoping my doctor agrees to take me off it at my appointment on Friday.

Update....26th April 2013:
My GP has agreed that pregabalin isn't working and so isn't worry taking. So I am now going to slowly come off them, dropping one tablets every few days! I'll update how that goes as apparently you can get side effects from the withdrawal!

Update....2nd May 2013:
I am now fully off the pregabalin! Can't say I've suffered any side effects by coming off these whatsoever.
I dropped one 75mg tablet every two days, so was off them in 6 days. The only difference there seems to be is that I'm not sleeping as well! :( I am waking up at least 2 or 3 times a night and then struggling to get back to sleep because I'm too hot!!

Pulsed Radio Frequency Ablation (nerve and facet joint)

Many people hear about Pulsed Radio Frequency Ablation (PRFA) and think that it is using heat to burn the nerve. Yes, this can be done but have heard awful things about the pain worsening! My consultant has NEVER ever talked about that as an option...and I'm glad!
My PRFAs were using very high frequency to ablate the nerve and stun it. This should then allow it to have time to heal, hoping that if the ON pain is gone long enough, the pain may not return!

Ooooo what a surprise this was NOT the case for me!
I had PRFA on its own, then four months later has PRFA with a nerve block at the same time....then four months later had PRFA to the greater occipital nerve AND the C2/C3 facet joint!
None of these lasted long enough! :(

When having the PRFA procedure, you are of course prepped as you would for any surgical operation. You most definitely NEED sedation...it's fairly hideous. Some of these procedures I can remember most of it, some of them I can't remember anything after the probe being inserted to rest on the nerve.
As with the neurostimulator therapy, after being 'earthed' with a pad on my arm or leg, local anaesthetic was injected into the marked spot on my head, before the probe is brutally forced into this area. After saying that I can feel the TENS type pulsing, I was often sedated more and often this is where I forget everything else. The one procedure I sort of remember, was feeling intense pulsing on the nerve that didn't feel nice, but the sedation made it bearable. I couldn't tell you how long it lasted but I seemed to be in theatre for about 40 minutes.
Afterwards, recovery was pretty painful and on one occasion I was given so many strong painkillers via drip that I felt so dizzy, my blood pressure had dropped dramatically so I was kept in overnight! My consultant came to visit, apparently I was in extreme pain so he's glad I can't remember a thing! I wonder what I said...hope I wasn't too rude!

The weirdest procedure was the PRFA to the nerve and C2/C3 facet joint. I was told they would ablate the nerve first, so that I could talk to them about correct positioning before being heavily sedated, then would be turned to do the facet joint.i assumed they would go into the spine joint through the back!
When I came round in the recovery room I was in super pain! My oxygen levels were low and they tried three different painkilling drugs on me. I was in recovery for an hour and a half!!!! My neck muscle on the right side felt achey but the back if my head felt like I'd been hit by a baseball bat! Utterly awful :(
When I finally got back to my room I felt rough. Eventually when I was helped to get out of bed, I was very dizzy and getting to the toilet was a struggle. I looked in the mirror and I realised....looking at the two puncture wounds on my neck, that's where they went in to do the PFRA on the facet joint. It honestly looked like I'd been bitten by a vampire!!!!!
After a few hours in hospital and when is eventually eaten, I went home with a pounding head.
As always I knew it may take a while to distinguish what is surgical pain and what is ON pain...but this time my head was numb! If I touched the right side it was a dumbed down feeling. This was great! It lasted a few days, until the pain returned :( Since then it has been really up and down. There seems to be no rhyme or reason as to what makes a low level pain day and what makes a high level pain day.

Right now I've had enough of this!!!
My life is so on hold.
I can't make plans, just in case I can't manage them.
This is no way to continue my life.

Peripheral neurostimulator therapy

Following my first nerve block, my consultant decided that I needed something different to hopefully get a better response.
Through discussions with other neurosurgeons he found out about peripheral neurostimulator therapy, sometimes known as pulsed radiofrequency (PRF). This is where a probe that is attached to a TENS like machine, is positioned on the nerve and turned up to a frequency that can be felt but is bearable. This is meant to re-educate the nerve into not registering any pain and it can stop the ON pain for up to 9 months.

For me, as before, I was prepped for the procedure much like you are for any operation. I entered the surgical theatre knowing I would not be sedated, as it lasts up to half an hour.
After being positioned on the table, and marking the point of most pain at the back of my head, I was injected with local anaesthetic. Then the needle/probe was poked through this mark...there was so much intense pressure and pushing at this point, it was almost unbearable! Once it was in place there was less pain and the probe was connected to the machine, after i was 'earthed' by a pad being attached to my arm. The machine was then turned on low for me to check that I could feel it! It was the oddest feeling...something tapping inside your head! But it was strangely soothing! Then the frequency and timer was set on the machine and that was it! I was then free to chat to the nurse who had been holding my hand and letting me squeeze it ever since the beginning. I was able to feel 'normal', well as much as you can lying in a theatre with your bum hanging out the back of the hideous gown you are made to wear!
When the timer stopped and the machine was turned off, I felt good! Well...until the probe had to be removed! Again that horrid pressure, like my head was being crushed, but it didn't last long!

After getting back to my room, after only a short time in recovery, I ate as soon as possible, took some tramadol for the extreme aching that I'd been left with, and left for home!

As far as I can remember, the aching pain lasted a couple of weeks but the ON pain was definitely lowered afterwards. Sadly this didn't last much longer than a week! :(

Two months after that I had a repeat nerve block. This helped me get back to work for a few days a week but still not lowered the pain enough to have a normal life!
The journey continues....

Nerve blocks

Nerve blocks are used as a confirmation of diagnosis for ON. If you get a positive result and the pain is considerably lowered, then it means that the occipital nerve is damaged/affected.
The nerve blocks are targeted towards the nerve that causes the pain. This can be the greater or lesser occipital nerve.

In my experience, the nerve block was far more of a big deal than I thought. I presumed that I would feel fine the day after...but it actually took a few weeks for me to get back to 'normal'!
During the procedure my consultant pressed over the occipital nerve area at the back of my head and found the point that if pressed worsens the pain. This is called the Tinel's point. A dot was drawn with a permanent marker and I was slightly sedated. The injections didn't take long, but were pretty uncomfortable.
After staying in Recovery for a while, I was taken back to my room. For a whole I felt fairly dizzy and although was given something to eat, felt a bit strange....but was glad to finally go home a few hours later.

The injection site was tender for about a week and although it was difficult to distinguish the difference between ON pain and surgical pain, I could tell the pain had been lowered significantly.
Unfortunately for me, this only lasted a week or so! At least that was proof of my ON ...but I truly hoped it would be the answer for me!
This left me wondering what next?!
How can I live like this? I had heard that you were able to have nerve blocks six times a year....there's no way it's worth me going through all that just for a week of lowered ON pain!!

The search for an answer continues.....

A couple of years later.....

Although I was sure my ON had gone, as I didn't think I felt any pain anymore! During the summer holidays two years later, I felt the awful dizzy feeling when getting on and off the sun beds!! Uh oh!!
It wasn't long before the pain returned. I put up with it for 6 weeks and by then thought I'd better go to the doctors. I am sure I was in denial that it was ON again! I just hoped it was just a headache!! Haha. Yeah right!!!

Of course, after discussion with the GP I knew what it was really. Annoyingly though, the doctor felt I needed to revisit some of the drugs I'd already tried. So I was put back into amitriptyline :( Oh...what a surprise, it didn't help at all!

Then amongst all this awful luck of mine...a little spark of hope appeared. I realised that I could actually be covered by my partner's private medical insurance! So I quickly mentioned this and you should have seen the sigh of relief from the GP! I know she had said they do not know much about the condition...but she was utterly relieved she no longer had to try and help me.

As soon as possible I managed to see a wonderful neurosurgeon, who knew all about ON! He has a lot of patients in the same position as me, with ongoing pain affecting their lives. It was great to actually be able to talk about it and get intelligent answers back.
It wasn't long, after MRIs and x-rays, that I was booked in for my first surgical procedure....a greater occipital nerve block.
I presumed it was a small procedure, perhaps the Internet is to blame, but it took me a few weeks to recover from the surgical pain. BUT by the time that had diminished, my pain had returned.
As a nerve block is used for diagnosis, at least it was proof I had ON...but sadly was not the answer that worked well enough for me!

Since then I have undergone five other procedures!!!! None of which have lowered my pain for a suitable amount of time. So I have been in and out of work for two years!

The procedures I have had since then are;
* peripheral neurostimulator therapy
* another nerve block
* pulsed radio frequency ablation (using high frequencies rather than heat)
* pulsed radio frequency ablation and nerve block
* pulsed radio frequency ablation to right greater occipital nerve and C2 and C3 facet joints

I will add pages about these procedures when I can!

How it all began!

Onto my journey I guess......

It all started in October 2008, when a drunk driver crashed into my car whilst I was stationary at traffic lights! Crazy..as it was only 5.30pm!!!

Initially I seemed to suffer severe whiplash but despite some aches and twinges, returned to work and was fine.....until January 2009. One evening i suddenly got THE worst headache, stabbing pains not stop and awful dizziness.
This continued.....and doctors seemed unable to work out the problem. I tried so many different drugs, many made me sick but just didn't help. Eventually, i am referred to a neurologist 2 months later, who knew the issue immediately. After prodding me about and asking a million questions, I was diagnosed with Occipital Neuralgia.
I felt so relieved....until I returned to my GP who blatantly said "We've come to the end of the line here, so you need to seek alternative treatment."
Why, oh why, I couldn't be seen by the neurologist, I will never know! :(

I began a series of acupuncture treatments. To start with they did make my pain worse, until the expert was able to work out the best positions of the needles. In fact, after a while they helped enough to get me back to work!
I battled through a few months but after the summer holiday (as I'm a teacher) I returned in September feeling well enough to continue as I always had!

GREAT I hear you say...but my journey certainly does NOT end there!!

A bit about Occipital Neuralgia

Welcome to my blog!

I decided to write my own blog about my journey battling Occipital Neuralgia (ON) as it is so difficult to find much on the Internet that is based in the UK.
Here in the UK, we have different, and perhaps limited, choices to help this condition, expecially seemingly compared to America.

So....I will begin by explaining the condition as simply as possible.
Occipital Neuralgia is desribed as Neuropathic pain originating in the back of the head along the distribution of the occipital nerves. This can be the greater or lesser occipital nerve that originate in the C2/C3 area of the cervical spine.

ON is characterised by severe pain that begins in the upper neck and back of the head.
The pain can be a mixture of;
*  sharp, shooting, zapping, an electric shock or stabbing
*  aching, burning and throbbing pain
*  tender scalp
 The pain is typically one sided and can be constant pain or varied length attacks.

There is no cure for ON but the condition can be supported by management of the pain.
Although ON is not life threatening and can not cause other conditions, it can be life changing and a person's quality of life can be severely affected.