Irritated.....

Recently I have generally been irritated by my stimulator, no matter what program I use!

I tend to feel it a lot more than I used to, even on low settings, and it is really quite annoying. Because of the low frequencies I use, it feels like a heart beat or pulse in the back of head! It is pretty disconcerting. I used to get this if I rested my head against something that pressed on the lead but now it happens when my head is not resting on anything at all!

I have also noticed that the left end of the lead seems to stick out more than it used to. I'm not sure if this is due to weight loss! Can you lose weight on the back of your neck??

I am still having the battery flipping issue too. 

I am awaiting a phone consultation from the consultant on 14th October. I guess this will be to discuss the issues with the battery and where to go next. I am Hong though that Mike from St Jude's had filled him in on the potential end of the line of settings to try with my stim, as I feel that this is also a big issue that I need to know what options are available ....or not!!

A couple of weeks back I had a coupe of days where I had weakness in my right hand. I have no idea if it is related to my ON but it seems pretty coincidental. I basically went to write something down and I couldn't physically hold the pen with any control. I was unable to write properly and my hand would spasm at points, making my handwriting look all over the place. I continually tried to corvette this issue through practise, but I had little fine motor control for almost 12 hours!! My hand and arm felt heavy and odd and I couldn't generally control it. It was so strange, but it hasn't happened since. 

I have been experiencing higher pain levels for a longer period of time than usual and throughout this have had extreme dizziness to combat too.

The programs I have set on my stim at the moment don't appear to be helping in any way. I either can't cope with the pulse or it is pinchy or too strong, or it is just my everyday program that doesn't break through the worse pain levels. I have usually been riding it out and it drops in intensity within a few days, by this time it hasn't and has lasted well over a week at this pain level!

Scar update

Thought it was about time to share how my scars are! 

Overall they are really good!

My stomach one is the best. 

You can barely see it now! Only problem is, I am almost certain I am going to end up with a new incision there, to sort out the battery movement issues. Shame really!!

My chest one is still irritating. It's looking slightly better but still very obvious compared to the rest, and the other half of it. 

It is still really itchy and sensitive when clothes or hair touch it. I am constantly itching it but it hurts to itch on it, so I am always trying to scratch around it. I am sti using rose hip oil on it, but really it just soothes it temporarily as I don't think it is making it look any better anymore.

My head scar is very fine and barely seen but it's the excess wire loop that is noticeable.

I do wear my hair up for the gym and that is manageable but I have worn my hair up for work a couple of times and by the end of the working day my head is tight and achy, so I can't keep it up any longer.

Work place assessment

Finally, after years of seeing Occupational Health and the same doctor recommending me having an assessment of my workplace, to see if there is anything that could be done to support me at work, I had this on Thursday 10th September.

Typically my school weren't prepared for the arrival of the registered nurse undertaking the assessment, which annoyed her no end! 

She came into my classroom for about 45 minutes and then I chatted to her whilst the class were in assembly! I then had to organise someone to take them out to break (in the middle of my meeting) and then had to interrupt once again to ask someone to organise cover for my class for a further 15 or so minutes! The nurse was outraged that cover hadn't been sorted beforehand, as it was supposed to have been! I tried to explain that this is usual for me! 

Anyway, she was thrilled by my teaching and pleased that I had done what was under my control to ensure the classroom was suitable and that I could use areas with as much ease as possible, and that I endured I didn't twist my head too much whilst using the computer at the front of the class. She was appalled that I had a rickety old desk that I had had to provide myself and that my chair was broken and therefore not supporting my back efficiently. 

She also recommended that I undergo a stress risk assessment, as obviously in a highly stressful job, she is aware that this has an impact on my condition. She kept saying "remember it is just a job" and "one day at a time"! It was great to here these things from someone who was solely there to think about my welfare. 

I then showed her where we do our lesson planning when out of the classroom.....and she was disgusted!! She couldn't believe that anyone, let alone me, was expected to use that area to plan on a computer for 2 hours at a time. She wrote many things to add to her report here, including lack of adjustable chairs, broken keyboards.

I am so looking forward to reading the final report. It will make an interesting read. And I wonder how many of the recommendations will actually be sorted or taken up??

Reprogramming

So after a fair few days of feeling utterly awful, super dizzy and often feeling sick and just 'not right', this reprogramming seems to have been at a good time.
Today is also the first day "signed off" under reduced hours on a medical certificate, following my consultant's advice a while back.
Due to a mess up from the pain clinic in July, I haven't seen Mike from St Jude's since March, but saw a different rep back in May. I filled him in on the fact that I am only really using the same 2 programs that I have done since he set them at least back in March and that nothing makes any difference when there is breakthrough pain, and that I just have to ride this out. I also mentioned that these episodes have risen in frequency, despite having the summer holidays without work they still occurred fairly often.
Mike reminded me that as my lead is very close to the occipital nerve, I am only using very low frequencies of 2hz. He explained that during the operation Mr Patel goes down to the point if seeing the nerve, to ensure the lead rests in the correct place, but that usually this still has a small distance between the actual nerve and the lead. He believes that my lead is literally sitting on the nerve, which is why it is so sensitive to the stimulation. Also every contact on the lead gives me sensation, when usually there are points where nothing can be felt. He explained that this makes it more difficult to find a setting that is comfortable and also cuts down the scope for creating a range of programs for me to choose from, as I just won't get the range other people would. Therefore, he feels that it is getting to the point where there isn't that much more that he can do.
This is not what I expected!!!
I understand what he is saying and I understand technically what he means, but I just can't get it! Why is it always me?!! Other people won't have this issue as they would get far more range of frequencies that can be chosen and used.

So, he decided that we NEED to try some higher frequencies, as we aren't getting the best results from sticking to 2hz. Also, apparently if we use lower frequencies that are slower, such as 2hz, we are more likely to stimulate small nerve endings nearby, which cause the pinching I often feel, meaning we can't use certain setting or turn the up higher in that range.
After a lot of fiddling around with frequencies and me getting tweeked and twinged a fair few times, we managed to find a setting that allowed 10hz and then one with 20hz. Mike feels that these might give me something new for the nerve to feel when the pain is at its worst. He is interested to see if I can use these settings and whether they will be useful on a lower range for working and moving around, or if they can only be used when inactive, due to the intensity.
At least I've got a bit of hope still. These could be the answer. If I don't try something different and out of my comfort zone, then I am limiting the benefit of the stimulator. Hopefully these will give me something else to use when needed.

After a little thought, I know it is all just how the cookie crumbles, but surely if the lead wasn't so close to the nerve and was raised up a little, then I could handle higher frequencies and give myself more of a range of programs that I could cope with.
Would Mr Patel be able to change where the lead is in the future?

Summer update

It's been a while since I last posted.
Nothing has really changed. I am still having trouble with the battery flipping and the more weight I lose, the easier it catches when I turn over in bed, waking me up and I find that I subconsciously am holding the battery area, as I do when it flips. I am still suffering severely higher pain during my periods, mostly on the second day for a day or up to three. Sometimes this doesn't occur though.
I also seem to get worse pain without rhyme or reason. After a week abroad in which I had a pain free week. I didn't once get out my remote to change programs and didn't really think about it all much. But two days after returning, today I am in so much pain. I tried to ignore it but eventually it started making me feel sick, making me stop what I was doing completely and sit down for half an hour or so. The pain didn't ease, but the sickness did! So I carried on with what I was doing, as I do, to try and take my mind off the pain.
I still don't have a program that helps during this heightened pain.
At the start of the summer holidays, just past the middle of June, I had a voice mail message left from the pain clinic offering a date within a few days to be reprogrammed. As it was my last week of school, things were pretty crazy and on returning the call at lunchtime, I had to leave a message. I asked them to call back to confirm. They never did. I tried calling again but couldn't ever get through at the times I was able to phone. Since then I still haven't heard anything at all!! Disgraceful really!

I have a GP phone call in place next Wednesday lunchtime to get the sick note to allow me to work 3 days a week. Am hoping this all works out, as the GP I saw is not able to call me and has no appointments until 14th September!

So 9 months on, I am glad I have had the permanent stim but now accept that my life won't get back to 'normal', the way it should be. I realise that I need to fight to get appointments and reviews on my progress, as no one seems to bother creating appointments without me asking for them.
So my next step is to see my consultant again to discuss the prospect of another operation to sort out the battery issue, and to get an appointment to be reprogrammed in the hope of finding better program to help with the worse pain levels.

Found a decent GP at last!!

I never used to go to the doctors for much. I never needed to. But for the past almost 8 years, I have gone more times than I can count!

Most GPs have sadly been utterly useless and a waste of my time. Many stating that they just don't know about or understand my condition. Some getting annoyed with me. Others think I'm wasting their time.

But this one....she listened and despite the 10 minutes you are allocated did what she could in that time.

I had chosen to see her as she was young and am guessing new to the profession. I therefore hoped that meant enthusiastic and thorough. I think I got it right!!

I explained the problems I have been having with worsened pain and little support at work, and mentioned the days I've had to have off recently. Of course I said that my consultant had advised that I go part time temporarily.

I explained that I didn't want to do this so close to the end of term. Annoyingly she showed me that you can not forward date a sick more, yet she then offered to write a letter!! I was astounded! I have never felt so thought about and with clear understanding of my needs. She wrote a letter explaining that I will be getting a reduced hours medical certificate in the autumn term and that this will reduce my days to 3 instead of 5 and that this should be at the start of the week. 

She did say that they do not have to follow the recommendation for which days, but she added it to help me out. 

I also asked her to check my chest scar. She said it was unusual but within the 'normal perimeters'. She advised keeping it moisturised and agreed oil is probably best. So I will continue with the rose hip oil. Basically, she thinks it will go durn and stop being so itchy and sensitive over time but to come back to see her if no change by November (one year after the operation).

I will definitely go back to see her in September for the sick note! And she will now be the doctor I ask for! 

Can't believe I'm back to this feeling....

I haven't felt this bad for a LONG time!

Constant severe head pain with random stabbing in the temple and back of head. I knew my dizziness as getting worse and more often but I am back to breaking point, where my work is now affected and I spend my evenings trying anything to help relieve the pain I am feeling! 

This is no life!

Today at least two people said I looked tired/exhausted/unwell. I guess I at least feel that it does show when I am at my worst and some people, who look carefully, do notice. Usually people hate to be told this sort of thing, but it reassures me that I am at my worst.

At point usually is when I have to take time off work. I am begun to feel so bad in class that children start to notice that I am holding my head, or I need a moment because I am dizzy. I start to take out my pain on others, by getting annoyed at nothing in particular and letting things frustrate me, that wouldn't normally.

I am so trying to get to the end of term but as things are, and trying to manage full time, I have already had to take one day off last week, just to help me through. Sadly, I see that this may be the only strategy I have available.

Apart from more reprogramming, and hoping we find a useful setting sometime soon, I'm not sure what else is going to help me now, in terms of combatting the breakthrough pain.

To help my pain levels not to reach this high so often, I am awaiting the GP appointment to discuss reduced hours for the start of next academic year. This is now my only option. 

I am willing to give this a go and I really want it to work!