Interesting few months...

[alexfrombath]

It's been quite a while since I've posted on here. I was for a while trying to post at least every few days and I was doing it from work. Then things really nose-dived with the tics and along with that I had a bit of a crisis, I lost all of my confidence and suddenly felt like if I posted somewhere like this about it I'd just seem whiny or something. So I didn't post for absolutely ages.

So to update...things continued getting worse after I moved jobs. The original idea behind moving was that maybe a behind the scenes job and some new meds (clonidine at the time) would do the trick. Unfortunately that turned out not to be the case, things continued getting worse and the rate at which they were getting worse continued to also get worse.

It reached the point where after a few weeks of barely making it to work due to the tics anyway, it was decided that the motor tics were too severe and I needed to take some time off. So I did, but things continued getting worse. I tackled this probably in the worst way by just staying in the house and only going out at night, and even when I went out at night I was having to find friends to come with me. The worst parts of it were my leg tics (dropping to a crouch and shooting back up being the most damaging - it was happening repeatedly) and my back-arching tic - which more than once landed me on concrete/footpaths/roads on the back of my head. One of the most embarassing was the need to be within running distance of a toilet as I had the return of an old tic which made me make the muscle movements for voiding my bowels or bladder constantly. Along with all of that my other motor and vocal tics were going wild and battering my wrists, neck, head...the lot. In short I felt like I was getting to giving up point.

So I went back and asked for some different medication - it was clear by this point that clonidine was making little or no difference. I tried Tetrabenazine for a few weeks, but again - very little difference. It did make me incredibly sleepy but unfortunately also made me incredibly suicidal. (Looking it up online afterwards I do question the sanity of my doctor offering my a medication that comes with warnings against prescribing to people in a depressive state as for obvious reasons I was quite depressed by this point).

So I went unmedicated for a little while. I stayed in the house almost all of the time, twitching away to my audience of one. Generally being a hermit. (Hooray for video games and netflix)

Then a few weeks ago I got a phonecall from my GP saying that there had been a communication from Dr C in Birmingham (who in my view, right now, is a saintly figure) offering another medication called Topiramate.

I can't quite put into words how shocked I am by how effective this medication has been! I have *never* had anything be this effective before. I mean to put it in perspective, a month or two ago I couldn't walk the 5 minute journey to the town centre and go down the high street without an escort because I kept injuring myself with the tics (tripping over, banging head, crouching down in middle of roads etc). Now I'm fairly regularly going out alone and walking around!! I'm not saying "IT'S A MIRACLE, I'M CURED!!", but I've calmed down to the level that they are usually at when I am going through a fairly quiet period...I am so happy with this I could almost cry after the last year!!

There have been some complications though. For a day or two I lost most of the vision in my right eye. Had to go for some emergency tests at the opticians and stuff to make sure that I didn't have glaucoma from it (which is apparently quite common) and also I have for the last week had some quite catastrophic gut cramps and putting it politely...the squits.

I can also see why some patients/doctors on the internet call them "Dopamax" (the trademark name is Topamax) because they are making me a little dopey at this low dose...forgetting things in the middle of sentences, (like now that sentence was supposed to have more on it but nope...blank) and other stuff. But nothing near as bad as anti-psychotics etc.

The only kick in the balls has been that Occupational Health have now decided that I'm unfit for my position in work and I've been redeployed. Which means that from the date of that assessment they have 12 weeks to find me a new position or my contract is terminated. I've been warned by more than one person that they are probably using a very common loophole to get rid of me without contravening the DDA/Equality etc. Bit of a kick in the teeth...but I was expecting them to try something like this after having to have almost 4 months off of work sick because of the TS.

On the bright side I think I'm feeling generally happy enough to get through it, it's so refreshing to be calm enough to function fairly normally again! Already been blasting the area looking for jobs...so good luck me I guess?

Long story short...I would definitely recommend giving Topiramate a go as it really, really seems to be working for me at the moment!!

Well then...few months of post in one go!

[catherinem]

I hope they find you a new job soon, I'm glad things are getting better and I hope to see you on the 1st Dec.

[alexfrombath]

It's almost guaranteed they won't - the HR woman was fairly clear about it in the meeting as well with things like "there isn't likely to be anything", "don't hold your breath" and "start looking elsewhere for a job now". Little bit pee'd off for all that, I was perfectly happy to go back to work in the department I was in. But as I said I'm quite sure this is just a legal way of getting rid of me...so I'm not taking it to heart, just getting on with life and finding a new job (not the easiest task at the moment though!)

[catherinem]

Sadly it is Ideally I'd like to be self employed. I worked for a rather large company that do government contracts, I was working on EMA which is seasonal, worked through an agency for about a year, got taken on by the company, after a few weeks due to EMA being a bit seaonal (busiest at the end of summer through to Christmas) got shifted upstairs to do TFL ( congestion charge for transport for London) now get this! EMA people get paid anaverage s***ty Cov rate of pay, whilst TFL people although being in the SAME building in COVENTRY get paid London waiting, which is the higher rate of pay for people who live in London. TFL people go through a about 3 weeks training until they "go live" we got 2 days until we went live - grghtjgawitgjkw. Then...just as my "probationary period" of about 4 months is up (one day before to be exact) I get hauled into an office and SACKED !!! For taking time off sick, THEY sent me home the day before as I'd spent 8.45 mins in the loo and looked ill. If you do go self-employed make sure that you're turning over a decent profit that you can live off and it all works smothly before you let anybody like Pertemps/A4E etc corner you into going self-employed (thus bagging them a big fat fee and getting one more off the dole). Good luck xxx

[alexfrombath]

I think for the time being I'm going to stick to looking for simple jobs until my brain has recovered. The last year has really taken it out of me and I don't think that now would be the best time to try a big jump like that! I think it's a big enough jump that I'm looking for customer service positions in shops (something that a few months ago was completely off of the cards again) at the moment, as stupid as that sounds!

[catherinem]

When I was a kid (and older) my dad was mostly self employed, when he was made redundant from a factory when I was small a friend suggested that like him he should have a bread round/mobile shop, so that's what he did pootling around Llanelli and the Gwendeath Valley rather like postman pat but with cakes, lol. After the miners strike a lot of customers owed him loads of money and his wholesale customers (small village shops) closed, thus he was forced to join the dole queue, so during this time whilst applying for jobs that would numb his mind he looked into buying a small country garage and petrol station (my mother said no, the house was too small) taking over a post office and village shop (I liked that idea, I would have loved to be again his little side kick helping out in the shop, my mother wasn't keen on moving to a village ) finally he settled on a garage/workshop. He does have a workaholic streak to him and enjoys working in his own way inputting his own ideas. Such as "Why have you bought 48 can of pedigree chum?" "You never know, somebody may have run out" Indeed, the next day a farmer's delivery from the farmer's co-op was missing 48 cans of dog food - problem solved.

There is a fellow ticcer on FB who has his own franchaise selling buisness, I did something similar, it is a lot of leg work and as the products are mainly household and cleaning products and the majority of customers are women it's usually easier for women, but he does pretty well. My buisness idea was internet based so as long as a make the post office I'm ok, but it was haviung enough stoke to make it profitable, and getting my hands on the right stock, not a pallet of dog food.

Hint - the company my brother works for a opening "pop-up" shops from Aug to Jan, they like quirky, tatooed, types, the company is Red5 it's like the Gadget shop, they often want shop assistants, I asked him but as I have cop he said maybe head office (if I lived in Hull!).

[alexfrombath]

My main issue for anything is transport at the moment, I've had to move my work search away from the local city (where I was working) back to my home town (where there really aren't a huge number of jobs, realistically) as a large part of the issue was the bus travel. Because of how severe my motor tics get, I have been repeatedly told no to getting both car and moped/motorbike so I'm sort of stuck around here.

My plan at the moment is to find something with enough hours/money to get by (as my other half is working I don't need much at the moment) and once that situation is stabilised and I have something that will give me a good reference after a few months I'm going to start looking at my options - be it attempting full time work in the local city again or starting my own venture.

For the moment though I really want to see how this medication plays out for a month or two more before I put all of my eggs into one basket if that makes sense? The way things were it was at the point where it was impossible for me to travel alone to the city (45-50 minute bus journey, busy bus) most days, which was obviously making things very tricky for work.