Hi, I'm Chloé...

[Skippy]

Hi Chloe

I'm sure that this has been said to you before - but make sure that you drink plenty of water - keeping hydrated helps the brain to cope and to heal.

Take it easy hun - you're very early in your recovery.

[Hoofbeat]

Hi Skippy

Thanks for the reminder. I used to be such a big water drinker (I was well known for my constant water bottle I had with me!) but to be honest I don't think I'm drinking anywhere near enough as I was now. The effort of going to the kitchen to get myself a drink always feels too great! I might start buying some large bottles of water to keep next to me in the lounge/bedroom to force myself to drink them.

I realise I'm still in the very early stages of recovery, but all the specialists seem to think I'm in a much better state than most people are usually in after an SAH, so I feel like I should be recovering quicker!

Thanks

Chloé

Edited December 13, 2013 by Tina
Text speak removed :)

[Skippy]

Hey Hun

Unfortunately the "specialists" aren't the ones recovering - I'm seven years in now and it took a good year for me to even start to feel remotely normal again. You recover at your own pace hun not that dictated by someone with letters after their name who have never gone through what they apparently specialise in

Bottled water next to is also a good way of keeping track of how much you drink - 2 - 3 litres a day but throughout the day not in a couple of hours,

[iola]

Hi Chloe,

I was told I could go back to work just 2 - 3 months after mine. There us no way that was gonna happen. First two months I felt like a vice was twisted around my head and the pressure was terrible. I cried constantly and I had constant vertigo.

I wanted to do more and there were days I did and when I pushed too hard I got headaches and dizzier than normal. I still get these pop fizz feelings in my head when I'm tired.

It all takes time. Skippy is right they do not know what is going on in your head and as long as you are walking and talking their job is done.

You will get there.

I

[Winb143]

Chloe,

There are days you will feel great and then the next absolutely tired, achey and just rough.

They will get fewer but give it time. I had mine in 2009 and still get the bad days.

Life gets better just keep happy and sing happy songs.

Do not stress too much as it's not good for you.

Keep smiling xx

WinB143 xx

[Hoofbeat]

Thanks Iola and Win for your words of encouragement. Am booked to go back to the GP on Xmas Eve as have only been signed off until 31st Dec, but can't imagine I'll be ready to go back to work in January as still so tired (am having good and bad days at the moment still!).

[gemma]

Hey Chloe,

Wow, I've just read your story. How frightening for you, particularly being so far away from home.

Although I'm a few years older than you, I still feel quite young to have been diagnosed with a BA and the consultants tend to think the younger you are the quicker you recover. But it's not necessarily the case, everyone is different. That said I sympathise with your desire to get back to normal. I too think of myself as a fit and active person. I went to the gym regularly, worked full time and am a mum of a three year old. Being told I couldn't exercise or go to work prior to my op was baffling because there was nothing physically wrong with me!! However, it was precautionary and now understand the reasoning behind it. I guess what I'm trying to say is to listen to your body .... There will be no exact timescale to work to, just keep resting, follow your instinct and taking each day as it comes.

Did you get anywhere with your query about sick pay and benefits? I'm a hr manager so if you want any further help about employment, feel free to pm me, I might be able to point you in the right direction.

In the meantime I wish you a restful few days before you see your GP again.

Take care

X

[Hoofbeat]

Hi Gemma

Thanks so much for your kind words - I am trying to set myself small tasks to achieve (the other day it was putting a few baubles on the Xmas tree!) which is giving me something to focus on, even if it means the next day I'm feeling more tired. I'm slightly dreading Xmas as it will be hard to keep up with the rest as we have family birthdays on Xmas Eve and Boxing Day and the Xmas Day celebrations! We have decided to still host Xmas Day with my fiancé doing the cooking as at least if we're in our own home I can disappear to my own bed and have a rest!

My fiancé actually spoke to the Citizen's Advice Bureau and they advised that I couldn't get any government support for the 3 days a week I was working freelance as the 2 day a week sick pay I would be receiving from my employer would be larger than the maximum weekly amount from the government anyways.

[gemma]

Can understand where you're coming from on the staying at home front, you need to be in familiar surroundings and on your own timetable! I'm dreading going to family as they're quite an exhausting bunch, let alone when you're not feeling quite as energetic as usual. But they're promised me I can go and nap if I need to and to come and go when I'm ready. I take it your partners cooking is better than my husbands (he'd only be able to muster up scrambled egg haha).

I hope you have a lovely time, but I'm quite sure we will be in touch before then, I'm feeling quite drawn to this forum already.

X

[Hoofbeat]

Hi everyone

Just a little update from me:

Firstly, I'm now unsure that my haemorrhage was an SAH as looking through all of the medical notes I was sent home with from the US everything refers to an intercerebral haemorrhage which I understand is different to an SAH (however, both my fiancé and I remember being told it was an SAH).

Secondly, although my sleep has improved a little I still found I was waking regularly in the night and struggling to sleep all the way through the night. I was seeing my GP for a review on Xmas Eve morning and they put me on amitriptyline (which my neurologist had suggested if my sleep didn't improve) and that has been a revelation - finally I'm now getting a good night's sleep! The GP was happy with everything else (my BP was fine) and has signed me off work now until end of January as I'm still struggling with fatigue, concentration and headaches!

So I seemed to be making good progress although I found Xmas utterly exhausted (not helped by two family bdays - one on Xmas Eve and one on Boxing day). However, I ended up with a horrendous headache on Thursday afternoon which kept getting worse and would just not go away and that night, I kept waking up in pain (although feeling drowsy from the amitriptyline). A 2am phone call to NHS direct on Friday am resulted in a trip to the GP on Friday morning. The GP then in turn sent me to my local A&E (they were concerned I might be having a rebleed) where I was quickly triaged and put in the majors ward in the emergency dept! They were fairly certain it was just a really bad headache as all the neuro signs were good, but decided to send me for a CT to be sure. Fortunately, they were right and the scans showed there was nothing to be concerned about. They sent me home with some codeine which definitely helped with the pain; I usually refuse to take codeine as I feel so drowsy and sick on it, but I was in such agony with my headache I was willing to put up with the side effects! Luckily one dose of codeine was enough to break the pain cycle and I haven't needed to take it yet again, but I've now got it incase I have another bad headache in the future.

On a slightly more positive news, yesterday I received a letter in the post inviting me to an appointment with a neuro-opthalmologist who my own neurologist and opthalmolost told me was doing research into visual field recovery following a haemorrhage. Fingers crossed this initial appointment may enable me to get involved in his research project and it may give some insight into whether we can do anything to improve my quadrantanopia which I've currently been left with following my bleed.

I hope everyone else is doing well after Xmas and isn't feeling quite as exhausted as I have been the last few days!

[Hoofbeat]

Hi everyone

Thought I'd do a little update. I had been making good progress (other than my vision) - my headaches were beginning to ease and I felt like my stamina was slowly improving, but then BANG yesterday I felt horrendous again I've clearly been overdoing it and now paying the price with a horrendous headache since yesterday morning (despite taking paracetamol and codeine). If I still feel really yucky tomorrow I'm going to go and see my GP and see if I can get any other painkillers as last night I was really struggling to sleep with the pain.

I've also just had a meeting with an occupational health visitor and she's left me feeling a bit confused and annoyed! She was a former IC nurse and was shocked at the fact I'm still suffering with headaches and fatigue at almost 3 months! She kept saying you need to speak to your doctors and get them to investigate as it's not normal to have headaches and fatigue this long after a brain haemorrhage! I was so shocked - everything I've read and everyone I've spoken to (Headway and Stroke Association) said it's completely expected, but she was telling me I should ask my neurologist about them. Luckily she did however agree that I wasn't yet ready to return to work and has said we may have a better idea in 6-8weeks if I will return to my current job (as by then I should have had my follow-up MRI).

In other news I feel my vision has improved a bit (but in the area not tested by the ophthalmologists visual field test) but its still an issue. As per my other post, next week I have my DVLA visual field test at a nearby hospital, so keeping my fingers firmly crossed for that.

[Wem]

Hi Chloe,

Pleased to hear you feel you have been making good progress, though I cannot help but feel it is still very early days for you yet and that may well be why you are experiencing a particularly bad headache right now.

One other thing to consider is that you may be starting to suffer from rebound headaches. It appears that if you take pain killers on a regular basis over an extended period of time, then the painkillers themselves begin to induce headaches. I suffered from that at about 3 months and had to take the bold step of stopping all pain killers until things settled back down. Might be worth checking that theory out with your doctor?

On the OH visitor situation, my experience throughout my recovery has been that it is likely that you will receive conflicting views from various health officials. My approach has been to follow the advice and guidance of those who can demonstrate good sound knowledge and experience of supporting patients following any kind of brain injury. I am certainly willing to listen to any health official on the peripheral of my exacting criteria but I tend to keep an open mind in terms of accepting/acting on their advice.

On the return to work issue, this is one that many of us have faced and my advice is to take it easy. Try not to rush back too soon, because as with any illness the improvements you are experiencing at home may evaporate when you subject your brain and body to more demanding mental and /or physical exertion.

Hope the headaches start to settle back down again soon, be kind to yourself and don't get too down on the bad days (they will pass). You appear to be doing amazingly well!

Take care

Wem

[Skippy]

Hi Chloe

I agree with Wem re the rebound headaches - I was rushed back into hospital 3 weeks later with horrendous pain and couldn't lift my head - turned out it was caused by the Codeine rather than the paracetamol - they tried me on Tramadol which made the whole experience even worse. I don't advise you to do what I did, but I discharged myself and stopped taking anything but paracetamol - the headaches disappeared virtually overnight. Please speak to your GP about reducing your codeine meds - its an opium based drug (as is Tramadol) and a nurse friend of mine was shocked that it had been prescribed to someone who had suffered a brain injury anyway!!!

Make sure you're keeping your water intake up too - about 2 -3 litres throughout the day - to help the brain stay hydrated and aid healing.

[Hoofbeat]

Both, thank you for taking the time to reply. I wasn't aware that codeine could excacerbate headaches. That is certainly going to make me more cautious about using it in future.

However, I don't think that it's responsible for my recent headaches. During the last 3 months I have mostly only been taking paracetamol. I got prescribed codeine when my GP sent me to A&E just after Xmas when my headaches were unbearable (she was worried I was having a rebleed). They tried giving me tramadol but it did absolutely nothing for the pain whereas the codeine did help. Since then I have only taken about 2/3 codeine doses (again when I had a horrendous headache) until the other day when I began to get another horrendous headache (and have since been taking it for a few days). I'm fairly sure the horrendous headache was a result of doing too much (I felt so much better last week I started doing more). Finally this morning the pain has started to ease and I haven't yet needed to take the codeine again (just paracetamol).

Thanks for the reminder about making sure I'm drinking enough. I've been trying very hard to drink plenty of fluid and I do think I've been drinking enough (I fill up a large bottle and make sure I drink all of that in the morning and then fill it up again for the afternoon).

Wem I agree completely about taking in everything the "officials" say. I don't think my OH nurse had enough experience of brain haemorrhages (particularly in younger people), so I won't consider her comments as valuable as those of my consultants and my advisers from Headway/Stroke Association. Headway in particular have been great in their support and reminding me to not push myself beyond my limit, whilst also encouraging me to make progress

[Alison Q]

Hi Chloe,

I also talked to my own GP about my headaches as they still continue and I was concerned about codeine. However, she was lovely and her view was that the pain is not caused by the painkillers and it is perfectly normal to continue with headaches because I am recovering and will be for some time. She feels that if I have pain she is happy with paracetamol and codeine because it will help me feel less pain. Very down to earth!

My Occupational Therapist agrees with this too and thinks headaches are normal after annie and SAH

So I follow this and view each day how it is - no pain equals no painkillers, achy headaches just paracetamol, if stronger pain add codeine 1 or 2 depends on level.

We all get told different on here by our GPs and health officials :confused:

Hope you get some sanity from your horse

Alison x

[Hoofbeat]

Thanks Alison. I use a very similar approach to my pain killers too - my head feels so much better today which is nice. Am trying really hard not to overdo it because I feel better though!

Sadly I'm not seeing the horse a great amount at the moment as we have flooding in our region of Oxfordshire so lots of the roads are closed. I was supposed to go to the opticians this morning but had to cnacel as the buses weren't running because the road out of my village is closed. Luckily my mum took me to saw him the other day and I will see him again at the weekend even if the roads don't open (we can take a much longer route).

Hopefully seeing my lady from Headway this afternoon if she can make it through the floods (had to cancel 2 other dates in the last week because of the weather!) and have just heard from my neurologist's secretary that the hospital is going to be in touch shortly to arrange my follow-up MRI! Am absolutely terrified of having it done (I hate having MRIs!) and worried about what they might find, but it will be great to make some progress!