Tea and Botox

I’ve spent the entire weekend feeling like I’ve been smacked against the right side of my face with a spade. But I’ve ploughed on, I’ve worked, I’ve mummed and I’m ready for the day job tomorrow.

The pain isn’t always as bad as it has been this weekend but these attacks are becoming more and more frequent as my current medication is failing. Last week I saw… lets call him Dr. Pain. For the second time. My best friend asked if Dr. Pain was gorgeous, only she could ask such a question but no he is not, he is a little scary if I’m honest. Dr. Pain does pain. His mission is find the cause and interrupt the pain signals. Last time he jabbed me in the head and neck with painful injections that didn’t work. He said he was disappointed but I can assure you no one was as disappointed as me. So this time he jabbed me with what felt like a million injections all over forehead and neck and back of my head and upper back. ‘How was that?’ He said, ‘because you seemed to deal with that pretty well, most girls say they can’t understand how anyone could have it cosmetically’. I replied that I have a high pain threshold. I have no idea how anyone could voluntarily have Botox. It was brutal.

I left feeling hopeful and a little self conscious that my face resembled a pin cushion. On closer inspection it did.

The Botox could take a week to work, I’m now on day 5 and in the middle of a particularly bad attack and feeling less hopeful than I was on day 1. Also I can’t move anything above my eyes. Imagine the tightness you get after sunburn and that is my forehead.

I don’t know life without pain anymore, where most people say to me, oh I never get headaches. I am more, oh I never don’t get headaches. And it’s really harsh of me but when people say, oh I’ve got such a bad headache today, I think you have no idea, I have had a headache for over a year. Sorry that really is not a dig at anyone in particular as I realise it’s highly irrational and not very kind but when you’re at your wits end, have tried various medications and methods it’s hard to remain rational at times.

There are some who seem to think that my headaches have magically disappeared (I wish they had) What are you still getting those? Yes just because I don’t publish a headache related Minion meme every other minute to my Facebook or update my status, ‘I have such a bad headache today please send hugs’ doesn’t mean that it has all stopped Instead I thought I’d make a public announcement in the form of my not so frequent blog on living post brain trauma and I shall leave you with a helpful list of guidelines on how to deal with my headache grumpiness:

Q. Is it caffeine? You’re always drinking tea

A. Just make me a cup of tea.

 

Q. Do you drink enough water?

A. Yes I drink loads of water. Now make me some tea.

 

Q. Have you taken anything for it?

(This one varies as I avoid taking too many pain killers and only take them at very bad times)

A1. No it’s pointless, painkillers don’t work very well but a cup of tea would be nice

A2. Only 2 ibuprofen with codeine and a couple of paracetamol and that smell? That’s the magic balm one of the girls from work gave me. Yes a cup of tea would be very good.

 

Q. Is it stress?

A. Likely, my life over the past 8 years could be compared to that of a character from Neighbours. I’m British, everyone knows the best way to ease stress is a nice cup of tea.

Q. Is it related to your aneurysm?

A. The Drs don’t seem to think so but then they don’t make me tea so I’m not sure whether I trust them.

Day in day out

This originally started as a Facebook status but it was getting so long and detailed that I thought I would blog as I don’t keep up with this anymore.

Some people seem to be surprised that I still have headaches. I assume that they think I’m doing ok perhaps because I just tend to get on with things and do my best to ignore the pain. The pain is always there, day in day out. I live with the constant pain in m head. Usually its manageable although I do wish it wasn’t there and I can’t remember what it feels like to not have a headache.

This happens every now and then, which leads me to up my medication before it levels off and the pain becomes manageable again. When the pain subsides I will have a couple of ‘hangover’ days. It’s a strange feeling where you can feel where the headache was but the pain isn’t so bad. A bit like a healing bruise I suppose. It’s a physical sensation but unlike when you stub your toe you can’t reach the source of the pain as it’s buried deem inside my head.

When I get to this stage it drives me crazy and I become desperate to become pain-free. I try really hard for it to not get in the way of my life, to ‘power through’ as I like to say, but when you can’t make it through a days work it is apparent that my headaches are affecting my day-to-day living.

Buddy Box

Ever since my GP told me that it’s likely that I will be on medication forever to treat my headaches it made me think.

1. Do I want to be on medication forever, forever is a very long time!

2. Is he really trying to help me?

3. This isn’t right.

I don’t know whether my hemorrhage gave me a new super power of confidence but it suddenly occurred to me that this isn’t right. I shouldn’t be feeling this way. I have been on medication for so long and I don’t want to be. For some it may be the right course and I respect this but I have reached a point where I don’t want this. I have seen a couple of different GPs since. One was open to alternative therapies, suggesting Indian Head Massage which I have tried and it was wonderful. The second said, you’re only 32, it’s a long time to be on medication for and referred me to Neurology. After two and a half years it felt like a relief to be told that this isn’t right.

Since the eye-opening moment I have been looking at ways to ease my headaches. There doesn’t seem to be a cause that I can pinpoint. No triggers. I say that I’ve been suffering for two and half years but that only counts the moment that they started occurring every single day. I remember getting them at high school a lot and at college. I remember getting a migraine in the middle of the night when I was at uni and not being able to move. I remember getting a migraine at work and my manager not believing me and in between customers I would curl up into ball on the floor behind the counter. A photo appeared in my Mum’s Facebook memories and I said I remember that day, I had a bad headache and felt ill.

I truly am the lady with the headache.

Some remedies are easier to try out than others. I’ve heard of that ear-piercing that’s supposed to help but that seems quite extreme although my sister said she’d come too! apparently showering in a certain baby wash is also supposed to be good. Both I’ve yet to try.

I’ve mentioned before that I hate the change of season from Summer to Autumn. It makes me feel physically sick as Summer ends. I don’t hate Autumn itself I hate what comes next and that Spring feels so far away. I find myself filling the season with things to look forward to. We booked to go to Legoland, we visited BeWILDerwood for Halloween, we have had a January family holiday booked at Center Parcs since we came home earlier this year. All these things distract my attention and help me look forward.

In September a post by the Blurt Foundation appeared in my Facebook newsfeed and it caught my eye outlining their ‘Buddy Box’ scheme. A package of self-care surprises. The Blurt Foundation is a support network for those suffering mental illness. Fortunately the dark days of depression are behind me but the thought of going back there scares the hell out of me. As we were approaching October, my least favourite month of the year I thought I’d treat myself to one of these ‘Buddy Boxes’ because I LOVE surprises. As a child the Christmas presents I looked forward to the most were those from Father Christmas. We would get a pillow case filled with practical and fun small gifts. Some were predictable, every year we would get bubble bath and I loved this. There would be chocolates, underwear, small toys and as I got older a Smirnoff Ice! Father Christmas visited me until I was about 20, I must have been very very good. October’s ‘Buddy Box’ promised to be something cozy. With the drop in temperature promised and the days darkening this sounded perfect so I pre-ordered one. When it arrived I was surprised because I didn’t know when to expect it and I couldn’t wait to open the present to myself. I went on to order November’s too and I have a confession to make, I love the way they are wrapped in their pretty little box that I have kept them that way and now have 2 hot chocolate sticks to enjoy.

October and November’s Buddy Box goodies

 

Being more self-care aware has opened my eyes further. I realised that being a mum of 2 boys, a wife, both employed and self-employed there are very few moments to look after number one and when I do I come under scrutiny. What’s with the essential oils? What’s the hippy tea all about? When I was in hospital for two weeks it was the first time in many years that I was being looked after. As an adult I don’t expect to be looked after but isn’t it lovely when someone does, no one else is going to surprise me so I may as well surprise myself.

MRI EVE

I’m already dreading tomorrow’s 4am alarm, we need to be out of the house by 5.15am to embark on my last trip to Addenbrooke’s hospital of the year. It takes around 2 hours for us to get there and I have to admit I was a bit surprised to see that my MRI appointment had been scheduled for 7.30 am – please arrive 10 minutes before your appointment. Thankfully it’s landed in the half-term holiday so we’re just going to drag the boys out of bed and make a day of it. Jedi who is an early riser is quite excited about getting up extra early. I’m pretty confident that he is the only one excited by this notion. He’s also asked if he can have Burger King for lunch. The place where Wayne must have funded a full-time member of staff during my two-week stay. I said no.

Rupture day was now a little over six months ago. It now doesn’t feel real. It doesn’t feel like it actually happened. I don’t know if it’s a coping mechanism because I do remember returning home from hospital and living my life in a state of shock but as life has slowly settled down and the pre-rupture routines have fallen back into place, well the only way I can think of describing it is like I was watching it happen to someone else on television or reading a book.

Tomorrow’s MRI will check to see that the little platinum coils are still filling my aneurysm. Everyone who I’ve spoken to about this have said things like, ‘oh! You must be worried’. Of course I hope everything is as it should but I know I have nothing to worry about. If the coils have slipped further into the aneurysm, which there is a very small chance, all it means is having the procedure done a second time. I’ve figured that if I came out the other side of having it done under emergency surgery with a bleed around my brain then having planned surgery should be a breeze. I am in no way concerned about the result as I have every confidence in the man who fixed my brain and the amazing team of people responsible for my care back in April.

I only vaguely remember having an MRI before. I remember being injecting with something that made all my blood vessels burn. I have never been so aware of every single tiny vein and capillary in my body, I felt the fire rush right to my finger tips. That’s all I really remember about it, I was in a weird state of shock and calmness where I was just accepting everything that happened and everything that they needed to do. My main concern this time is that is the appointment letter states that I must NOT wear eye make-up. This is something that terrifies me especially as I had planned an old-time’s sake hospital selfie!

Another day another drug…

Last week I saw a third GP with regards to my headaches. It came as a bit of a shock when they offered me an appointment for the very next day so I snapped it up. I don’t care who I see anymore (apart from one who I would refuse to see under any circumstances). Recently I had been experiencing weird dizzy spells. At first I found it difficult to describe, it wasn’t the head rush kind of dizzy it was more like stepping of a rollercoaster or being drunk where the whole room seems to move and sway. The first time this happened I felt electric shocks run through my brain and fell backwards into a wall at work. I made a hasty retreat. Then a few days later my brain felt like it was vibrating in my skull and it felt like rather than sitting on the living room floor I was on a rather choppy ferry crossing. The brain shudders started to calm but I was still getting repeated experiences of dizziness. I thought I was going to fall off Meow-Cat’s bed one evening whilst I was reading to him. I assumed at first that it was a response to discontinuing Keppra and then as my headaches were getting worse and worse maybe it was that.

The GP said it was likely unrelated to the headaches and sounded like Vertigo. Great another thing to tick off the faulty head list. Whilst chatting I then realised that I don’t want to go back on Amitriptyline. I know! A few weeks ago I was desperate to take it but I’ve been feeling so unwell the thought of going back on it scared me as I know how horrible it will make me feel for a while and I really don’t want to feel any worse. Last time it made me so depressed I was 100% convinced I was ill again. Fortunately this side effect wore off after a couple of weeks but the ‘hungover’ feeling in the morning never did. If I took it too late at night I would feel horrible the next day. So he offered another drug to try. Pregabalin. A quick Google shows me that it’s not licensed to treat headache and migraine but often is with mixed results. It’s generally used to treat epilepsy and anxiety. So… a little like Keppra then.

I started taking Pregabalin Tuesday evening. All was fine and then I woke up last night and thought I was going to be sick. I felt so so sick, it was like sea sickness. This morning I was clutching my stomach I felt so bad and I had Jedi and Meow-Cat’s Harvest Assembly to get through. School halls are not great place to be when you feel like you could be sick on your shoes at any moment. Fortunately I survived to tell the tale.

The good news is that after two and a half years of daily chronic headaches I have a GP who is going to refer me to a neurologist. I kind of feel FINALLY! My main concern was being expected to live my life with headaches forever, which another GP told was likely. No one should have to surely? He also told me to give me a call in a month to see how I’m getting on which I found quite refreshing. I’ve been on various medication constantly for over 4 years and I don’t want this anymore.

The trauma that is the common cold

Jedi and Meow-Cat have been back at school three weeks now and we’ve quickly slipped back in our old routine that was so abruptly shaken up back in April. Of course when your children return to school the chances of picking up a cold or nits increases by about two million percent. I am generally a warrior when it comes to colds, I received my training from my mum and Jedi and Meow-Cat are currently in training as I don’t want them to turn into the snivelling man-flu sufferer that is their father. We always know when Meow-Cat is coming down with something as he starts waking in the night and just cries uncontrollably but doesn’t really appear to be awake and there is nothing we can do to console him. He’s past this stage now and into stage 2 whereby he just casually sniffs and wipes snot right across his face.

A few years ago, shortly after I had Jedi I only had to hear, ‘So-and-so has a cold’ and I would pick it up. I remember one Winter I had a cold after cold with often just a few days in between. I was pulled up on it at work as my sick absence sky rocketed. If I didn’t have a cold then Jedi would and if he didn’t my mum who took care of him whilst I worked did. These weren’t any old colds they knocked us all out, they were vicious man-eating colds that would cause even the mightiest warrior to fall at. As I have mentioned before, pre-rupture my health had been better that it had been in a long time. I had energy again, it wasn’t quite so much of a struggle to face the day and I was happy, I rarely caught colds and when I did I would ignore them, shake them off because I didn’t have tiime for that nonscense. Well Meow-Cat has given me his cold. I knew I was coming down with something not because I woke in the night screaming but because I could feel it creeping up through my muscles and I started to feel unbelievably tired.

The tiredness that I am feeling right now is incredible, I can only compare it to the days of my recovery. I used to shake these right off and get on with it but do you know what? I really don’t want to get on with it. I want to curl up with a cup of tea and book and do nothing. Remember those days when I was desperate to get off the sofa and clean the house but in reality I couldn’t physically get showered and dressed until after midday and this was promptly followed by a nap. Well I want those days back, not for long just one or two days of watching ‘The Wright Stuff’ and ‘GPs Behind Closed Doors’ would suffice. I can’t do this as I have to create the most beautiful show stopping wedding cake that I have ever created and once I have those cakes covered and I have a paintbrush in hand I know that it will beat watching Channel 5 any day. There’s no pleasing some people!

Goodbye Keppra

Another milestone crossed. Monday night I took my last dose of Keppra. It has another name starting with L that apart from the last GP I saw who rolled it off his tongue I have heard no one else say it’s true name. I was told that I would expect to take it for six months and it’s now 5 months since rupture day so TAKE THAT ANEURYSM!!!

A few days after surgery apparently I had a seizure. I’ve seen it in my notes and I was told I had one so I guess it was true although I can’t remember what happened. Due to this I was put on 1000mg of Keppra everyday, 500mg in the morning and 500mg at night to ward of seizures, just incase. There is a small chance that a subarachnoid hemorrhage can cause epilepsy as the bleeding damages the brain so remaining seizure free will be another hurdle cleared.

I asked my regular GP whether there are any withdrawal effects from stopping Keppra and he just shrugged his shoulders and said, ‘fits’. I’ve done the dangerous Googling and can’t find anything reported. All it says on the leaflet is withdrawal may cause seizures. So I stepped it down gradually over the last few weeks as directed in STOP until I was just on 250mg a day which is tiny and today will be my first day without any of the drug in my system. I feel sleepy and a bit more dizzy than normal and a little spaced out, I felt a bit panicky at the school run and I have a headache but most of these things are fairly regular. Talking of headaches, it’s now been three weeks of constant headache. The last couple of days haven’t been that bad. Sometimes I feel like it’s waving across my brain, sometimes it’s like I’ve been smacked in the face but I do feel like an idiot walking out on these cloudy days wearing sunglasses.

A Pain in the Head

It’s now been two weeks since my headaches got significantly worse. If I had to describe how it felt I would say like an extended hangover. Some days are worse than others but it’s always there.

A doctor last week suggested that I tried massage so I booked to have an Indian head massage. The massage itself was very relaxing. I’m not a very touchy feely person, so I was a bit weirded out about having someone do this to me but Leanne was lovely, explained everything, how it worked and I trusted her. I would definitely consider it again and the next day the headache wasn’t quite as intense but it was very much still there.

I try my best to block it out, when I’m busy working or distracted I can pretend that it’s not there so it’s not debilitating. I’ve had constant headaches since rupture day but they haven’t been intense as they are right now (apart from post surgery of course!). Over the weekend it was so bad I needed to sleep and I did for two solid hours. I felt bad because I was missing out on Meow-Cat’s birthday.

I just have a few days left on Keppra and then I can count the month down before I can start taking Amitripyline again and hopefully get back to being pain free. Will I last a month? I’m not sure I can wait that long. I was doing some digging around on Google the other day (dangerous I know!) and my jaw literally dropped. Keppra has been used as a drug to control migraine and chronic daily headaches. It’s not a common avenue, more like an if all else fails option after beta blockers (like Propranolol) and antidepressants (like Amitripyline) have been tried. I could have cried because although I’ve still been getting headaches all this time the one drug I was desperate to get off so I could take my old ones has probably been preventing my headaches from being so intense.

I just wish I could wake up in the morning and for the pain to not be there.

Plan B

I did something brave yesterday… I saw a GP who I’m not familiar with! It may not sound like much but I have major trust issues with doctors since when I saw a GP at 18 and wasn’t taken seriously. It was due to a mixture of frustration at just having drugs thrown at me, the need for a second opinion and desperation to get an appointment ASAP.

When I woke up Monday morning my head was still pounding. I felt terrible and it was tempting to crawl back under the duvet and not go to work but I powered through. I waited for my friend to arrive at Muffin Break before work for a quick catch up and a much needed latte. Some people say that caffeine is bad for headaches but I figured that they add it into pain killers so it can’t be that bad.

As soon as it turned 9am I was on the phone to make a doctor’s appointment think I can’t cope another 5-6 weeks of this. Surprisingly enough it wasn’t the battle I was ready for and they got me booked in for first thing Wednesday. The rest of the day wasn’t easy. My head was pounding, I felt tired and generally worn down.

Refusing to battle with a nearly 5 year-old first thing yesterday I let Meow-Cat wear a Christmas baby hat on the short walk to the surgery. I met with the GP who had clearly had a good read of my notes so I didn’t have to explain too much which is always a relief. He asked whether he thought my headaches were my regular headaches that I was experiencing before or a result of the Subarachnoid hemorrhage. I’m not even sure anymore. I got the usual, you’re lucky, it could’ve killed you, response that I get from all medical professionals. I know I’m lucky and I thank my lucky stars every day. I glanced over to my two boys who were sitting patiently across the room and hoped that they didn’t hear. I was basically told that Propranolol was pointless as it’s prescribed to prevent migraines and I have tension headaches. I had intended on bringing up the subject of massage as I am so done with medication but much to my surprise he approached the subject before I could. I had already contacted somebody I follow on Facebook for information and was advised to seek medical consultation first due to my history.

The pain has been so bad sometimes that I just want to sleep or cry or both but I try my best not to complain. It’s only when I stop what I’m doing that I realise how much pain I’m actually in so I try to block it out and keep going.

Tonight I am booked in to have my first ever Indian Head Massage! I have NEVER had a massage so this is quite exciting! I’m hopeful that this will help me as I’m now a week into this headache. From past experience these headaches tend to last about two weeks before exploding into a nasty migraine so I’m keeping my fingers crossed that this lady has magical super powers.