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Hi, I'm Chloé...


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Hi everyone, I'm Chloé and I suffered an SAH almost 3weeks ago whilst on holiday in St Lucia. After a CT scan in St Lucia revealed an SAH in my left occipital lobe, I was flown by medical flight to the US after about 36hours where I underwent further tests (3more CT scans, MRI/MRA, angiogram and a trans-oesophageal ECG, blood tests).

No aneurysm, stroke or AVMs were found and I saw multiple doctors including an oncologist and haematologist and they still have found no possible cause of the SAH. I never lost consciousness and my BP has been amazing throughout. I am only 27years old, have never smoked/taken drugs, am relatively active and drink very little alcohol; neither do I have any family health issues.

The fact they've been unable to find a cause leaves me slightly worried as I know that having a spontaneous SAH in your 20s is unusual! I've been advised that I'll need a follow-up MRI/MRA after it's been 6weeks since the bleed to rule out anything like a tumour under the bleeding.

I arrived back in the UK last weekend and have seen my GP who has referred me to a neurologist who I'm seeing tomorrow afternoon, along with an ophthalmologist and physiotherapist. My right peripheral vision has been impacted and I feel like I have blind sports on my right hand side and I find my eyes get very tired - I've been warned that they are unsure if my vision will return fully (I have informed the DVLA).

I still feel very weak and tired all the time but was told by the neurologist in the US that I should be less tired very shortly as the bleed has only impacted my vision; he felt that once I was home in the UK I'd develop a routine and I should get stronger. My neck is still very sore which I've been told is expected and is why I'm seeing the physio.

I still suffer the occasional bad headache for which I'm taking paracetamol (technically it's Tylenol as I was given it before I left the US); though if the bleed was a 10 these headaches are more likely a 4 on a 1-10 pain scale. I'm also taking keppra (anti-seizure med) as they prescribe it routinely to all SAH patients in the US; my GP has said it's not given in the UK if you've never had a seizure (I haven't) so has advised that the neurologist may stop it when I see him tomorrow.

At the moment I'm just trying to focus on resting and getting better, but I'm finding it all quite overwhelming. One minute i feel fine and then I stand up and walk and realise how tired I feel and how my vision isn't right! It's so infuriating! Anyways I'm keen to hear any experiences from spontaneous SAH sufferers, particularly if you're younger than the usual sufferers.

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HI Chlo'e

I am not young neither was was my SAH spontaneous, well I wasn't expecting it to happen to me !! but it did and this

site helps a lot.

I wish you well and keep happy.

You have age on your side so that's in your favour.

Welcome to BTG and someone will help you xx

Now keep happy and sing xx my answer to all xx

Regards

WinB143

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Hi Chloe :) a very warm welcome to BTG !

You are so young to be going through all this bless you.

I really hope you will get some answers tomorrow....maybe write down all your questions, so you don't forget anything, it can be very overwhelming !

Resting up is the best thing you can do right now....such very early days.

We do have some younger members on here.

Have a read through the Forum when you feel up to it, you will find lots of helpful information and great support.

Please feel welcome to join The Green Room where we post daily banter :) we are a friendly bunch !

Take care and let us know how you get on tomorrow.

Wishing you well

Tina xx

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Hi Chloe,

You have had quite the adventure. I've been to St. Lucia and it is beautiful as long as you stay on the resort. I am not in my 20s but I am in my 40s and still consider myself relatively young. :) Maybe not to you since I remember being in my 20s and thinking 40 was so old.

Anyway, I am sorry this happened to you at such a young age. Mine was a non-anuerysmal SAH and they never found the site of the bleed. Mine was right in the middle of my brain. Looked like a 5 point star.

I was on that same meds you are. Keppra kept me pretty loopy and very emotional. The entire ordeal is very emotional. Since I was given minimal info I went perusing through the internet and found loads of info and some a little scary. Be careful not to focus on the negatives.

You are young so may bounce back much quicker. Thank the Lord above you are here and take it easy and rest and drink plenty of water and pace yourself.

iola

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Thanks Tina. Sadly my appointment yesterday with the ophthalmologist was rather disheartening. She confirmed what I already suspected about my vision loss - it isn't looking that hopeful that I will be able to drive again which I must admit I'm really struggling to come to terms with as without the prospect of driving I'm not entirely sure what employment prospects will be like long term. I was also a keen horse rider and own my own horse who is a 15minute drive away and living in the countryside without my car makes it incredibly difficult to get to him. My fiancé has been incredible throughout the whole situation and has driven me to see my horse a couple of times since we got home to the UK but long term it is going to be difficult to see him as often as I'd like (I usually visit him daily and ride several times a week) if I can't get myself to the stable.

Thanks Iola. The thought of never finding a cause of the bleed unnerves me - I've always been a natural born worrier and the fact we don't yet know why it suddenly happened makes me worried it could spontaneously occur again and that I might not be so luck a 2nd time!

Did any if you suffer with insomnia after your bleeds? Since getting back to the UK last sat I've only managed one good nights sleep (it usually takes me a day to get over jet lag), but right now I'm really struggling to fall asleep and also stay asleep. I'm so tired and desperate to sleep but I just can't. I think all the emotions are catching up with me now which isn't helping (not to mention someone hit my car last night and drove off whilst my fiancé took me to my medical appointment!). Am going to mention it to the neurologist when I see him this afternoon and see if it's worth me taking something to help me get some good nights sleep.

Thanks again for all of you kind words :)

Edited by Tina
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Hi Chloe :)

Sorry your news was not so good yesterday.... very hard for you :frown:

Life must seem very uncertain at the moment. I am glad your fiancé has been driving you down to see your horse :) good for both of you :) xx

I know it all seems very bleak at the moment, you are very early days. It took me just over two years for my peripheral vision to repair enough to eventually be allowed to drive again, I was told it may never repair, but it did.

I had double blurry vision for ages and when I get tired or over do it I still do.

Do you have other members of family or friends that are nearby that could maybe do a rota for you to see your horse more often.... being a huge animal lover myself I would hate not being able to visit often, also as I said before good positive therapy xx

Insomnia is a very common problem, definitely mention at your appointment, as you need your sleep for your brain to repair.

Sending you a huge hug !

Take care xx

Edited by Tina
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Hi Chloe

Wow you poor thing scary end to a idyllic holiday. it sounds like early days for you and I'm glad you have lots of support.

Definitely get yourself in with a decent neuro service, I see you are in Oxfordshire so you should be ok there. And talk talk talk about your worry, don't try and be brave all the time.

Try not to think that you can't drive just yet, give yourself some time and see how things develop. As for riding , well I would say that as and when you feel up to it there is no reason you couldn't with support and help around you. For now though maybe get yourself a loaner to take the load off a bit maybe so you don't have to worry.

Ask any questions, people will try and help.

Sleep issues are common. I found ear plugs at night and a very solid wind down routine each night helps me, bath, gentle neck rub, pillow spray and calming music. No stimulating stuff before I try. Also if I sleep too much during day then that's no good so I limit naps to short periods but early on lots of rest is good.

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Thank you everyone for the kind wishes and advice.

I saw a neurologist (first one in the UK and one that my GP recommended) on Thursday and thankfully that was a little more positive than the opthalmologist appointment. We still don't know the cause of my SAH but he suspects it was a cavernous angioma (although they can't 100% rule out a brain tumour until the blood has all cleared). He seemed relatively unconcerned about my case and told me that I need to try and push myself through the tiredness - easier said than done. He cleared me to start riding whenever I felt strong enough, and so on Friday a friend took me to the stables and I sat on my 18year old horse for 5minutes - it was total overwhelming but also felt so natural (I've been riding for 20years!).

Feeling inspired I also did some baking on Friday for an xmas gathering that I really wanted to attend yesterday (it was with old uni friends and is a yearly tradition). Well I just about survived the gathering but I realise now that whilst emotionally I needed it (so good to be surrounded by so many friends), physically it was a step far too far! I tried to rest throughout the day but come 9pm and I was so utterly shattered I couldn't move at all and I felt like my entire limbs were jelly and every muscle was trembling. I could hardly walk by myself and even today I feel so weak.

I have now learnt the hard way that I can't push myself so hard when it's only been 3 weeks since my SAH and I must not try and do so much - I think I took the neurologists advice of trying to push myself to the extreme! Whilst I'm feeling it now (so exhausted and suffering headaches) I'm glad I've done it as I think it's shown me a) what I can still achieve (small task!) and B) that I'm going to have good and bad days and I need to realise that.

Unfortunately one thing that the neurologist did say which I was disappointed with is that he wants to wait 3 months before we do a follow-up MRI to check that the blood has all cleared and to see what (if anything) is underneath the blood. When I was in the USA I was told the usual process is 6 weeks, but he said we get a better picture the longer we wait - has anyone else waited this long for their follow-up MRI? Given we don't have a definitive cause at the moment, I feel like I won't get any reassurance that it's nothing more sinister (i.e., a brain tumour) until after I've had that MRI.

I also asked him about my insomnia and he suspects that it doesn't help I've only been back in the UK one week and some of it is still jet lag (I'm not sure). He suggested trying to get into a good routine where I wind down slowly as he doesn't want to put me on medication for the insomnia just yet. Whilst this has helped I've fallen asleep quicker, I've still found that I'm waking up much more than usual in the night. I'll keep persisting at developing a good routine (I'm trying hard to not actually sleep during the day but just to rest) and if I'm still struggling at the end of this week will see my GP.

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Hi Chloe,

I have just seen your thread - so sorry to read you are so young! You will get lots of support and advice from here :-D

I was so pleased to see that you have been able to ride your 18 year old horse, how fantastic that must be and being with your horse will really make you feel better. Unfortunately I have been told that I must not ride, which is very upsetting for me as I have 2 geldings of my own - a retired 23 year old and my new 4 year old who was started and just beginning hacking out with him. I had a ruptured aneurysm and SAH on the day after I had been riding - 10th October 2013.

Like you, not being able to drive causes me a major problem because I used to drive daily to my horses and feed, groom, poo picking, riding etc. at a DIY yard. I am now looking into getting the horses somewhere else where I can walk to them and maybe a full livery. Eeeek - lots of money and I am not working :crazy: I keep asking friends and family to take me to see them and just being with my boys makes me feel happy. Do you feel the same?

I am older than you of course, I am 49 years old - but I still think of myself as young :-D

Make sure you relax and stop trying to push yourself. I have been out 4 weeks from hospital and are just starting to realise how much I need to get everything right. I am tired easily, my head hurts all the time, feel dizzy and kind of spaced out - but I make myself see the horses. But afterwards I feel happy and then sleep better.

Take care and do let me know how you get on.

Alison x

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Hi Alison

Thanks so much for your reply - it's lovely to meet another horse lover on here. I'm so sorry to hear that you have been told not to ride - is that just in the short term or forever? If the latter do you think you would be allowed to take up carriage driving instead? Whilst I have sat on my gelding it's only because he's so calm and experienced; I wouldn't feel comfortable sitting on anything else any time soon. I'm hoping to sit on him once a week for the moment in walk and to gradually build up the length of time I can manage. I'm just sticking to our indoor school and to be honest I'm not sure it I'll ever feel confident to hack again due to my peripheral vision loss.

I'm very fortunate that he was already on full livery due to my work commitments and was already being hacked a couple of times a week by the yard and they're now hacking him mon-fri for me which is a relief as I know he's fully cared for and I don't need to worry about him. I hope you can work out a way to get both of your horses looked after while you recover. I certainly agree with you that seeing my horse makes me feel so much better. I've had my gelding 14years so he is definitely a part of the family! He's also always been a bit of a grump on the ground (hates cuddles and is fiercely independent!) and he's just as grumpy with me now as ever which is so nice just because it's so normal (other people seem to pander around me and have that pity sound in their voice!).

Currently I'm getting to see him about 3times/week which is better than nothing.

On a more practical note does anyone have any advice on sick pay/benefits? Before my SAH I was working part time for an employer 2days/week who is now giving me sick pay equivalent to my full salary, but the other 3days/week I was working as a freelancer (I haven't paid NI on these earnings yet as only started this very recently so it will be in next tax return) and am now earning no sick pay for those three days. Is there any way I can claim any sick pay from the government for the three days a week?

Edited by Tina
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Chloe. My understanding is that if you are self employed you are not entitled to SSP as this is through employers payroll only. Glad you have this coming in for the days you typically work at your employer.

You may be able to claim employment and support allowance although with all the changes in benefits I'm not sure how it all works these days.

It's the reason people who own businesses or are self employed are best advised to take out some form of health insurance in case they are unable to work but we all know lots of those aren't worth the paper they are written on but might be worth checking if you have any cover on things like credit cards etc which may kick in if you're not earning.

Also don't try and push through too much early on tempting though it is, go steady and say with small targets. Using a horse analogy, it can give a nasty kick if it spooks early on so adopt the whisper technique on yourself.

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The usual wait after for CT/MRI scans is 3months to let things settle down as I know that's the norm..

Everything has changed with the benefit system of late, but I'd phone them or better get an apt with CAB they're great helped me a lot in the last few months...

Glad you enjoyed your time with the horse...

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Re benefits, other than CAB try your local or county council who should have a Welfare Rights department who employ trained advisors. They will be able to tell you if you are entitled to anything.

If at all possible refrain from calling the DWP helpline, they will not tell you what you are entitled to unless you ask about a specific benefit and then what you are told will probably not be correct. There are so many changes going ahead even the DWP staff don't know where they are.

We have a couple of links to forums on here for benefit advice in the Advice and Tips forum, they are stickies at the top.

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Daffodil is right about being self employed. I am now wishing I had taken out some kind of health insurance. As always, when I started my company I didn't have much money and therefore didn't pay any accident insurance because it is a lot of money and of course I felt I was fine and nothing wrong with me. I also didn't pay private health insurance for the same reason. For a few years all was well.

Then I just went downwards .... I had an accident in 2009 and fractured my spine when I fell off my horse, in 2010 my dog knocked me over and fractured my knee which resulted in 6 operations and this year a total knee replacement - and then of course the aneurysm and SAH. Unfortunately, no benefits or sick pay at all :frown: So to anyone who is self employed - please do pay all the insurance!

My occupational therapy lady has suggested this new "Personal Independence Payment" from the government as she thinks I can get it due to mobility and no driving and maybe care from my husband. Its worth you looking into it. Yes it is taking them ages (takes them 4 weeks to even send you the form) but persevere!

Everyone has a lot of advice and is really helpful for people like us who are in such early days. I am still at the "trying to get back to how I was" thing - so just need to settle down and do things slowly.

Alison x

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Thanks everyone for the advice - its all been very useful.

Unfortunately I didn't take out any separate insurance to cover loss of earnings for my freelance work as I naively thought I wouldn't need it. It was also only a temporary arrangement as I was due to go back full time to my current employer in January (I used to work FT for them but stepped down to PT when I went back to Uni to do an MSc, but we had just agreed my return to work, although I haven't signed any new contracts as we just agreed to keep my original existing contract but change the working hours as things changed).

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Hi There and Welcome.

I too had a bleed for unknown reason, followed by a stroke in my left occipital lobe with some damage. I have blind spots in both eyes at like 9:00 in left eye and 3:00 in right eye. I have gotten use to it for the most part. If I am tired it is much worse. I will get floaters and headaches etc. My biggest thing with the lose of vision is I hit the end of the isle with my shopping cart! I also think I am running into something out of the corner of my eye. It over time has come to be easier.

You are so early on and things will get so much better. I am able to drive, I only took the seizure meds for about a week. They made me feel worse. I do however live in the US so it is a bit different here. But I know people with one eye that drive.

I do not worry that it will happen again as it would be as rare as winning the lottery. I felt ill for months prior, did you feel not right? I know others with a NASAH that say the same thing. And they too were under a very stressful time.

My advice is to rest as much as you can, get up and move a bit with a walk or two but never over do it so much you start to feel sick again. That is the common mistake in recovery that we over do and push ourselves too hard. You cannot rush a brain injury to heal faster.

Good Luck, Maryb

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Mary

I did have the occasional headache before the SAH but I always felt they were explainable, e.g. after having driven 6 hours!). The 2 weeks or so before I did feel very tired - I kept falling asleep in front of the tv at around 8:30pm which my fiancé teased me for at the time!

Edited by Tina
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According to the Government website (DWP), PIP can only be paid after you have had a disability for 3 months and it will last at least another 9 months.

It takes them so long anyway so start the process going after 1 month and you may get something eventually :-D For example, they told me it will take them 4 weeks to even just send the form :roll:

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So today is 4weeks since my SAH and I've been discharged from hospital nearly 3weeks and back in the UK about 12days. I've been trying to follow my neurologists advice about doing some very small tasks daily and he's right, my sleep has improved significantly which is great. However, the last few days I've been finding my headaches have been getting worse. Whereas before I was taking paracetamol less often than every day (I only take it when my headache reaches a 3/4 out of 10 on the pain scale), now I'm finding the frequency of my 3/4 headaches are increasing and I'm needing to take the paracetamol more regularly.

Did others find that as they tried to do more, the frequency of their headaches increased? I'm finding at the moment even getting up and walking into the kitchen to get a drink is enough to give me a headache (I almost feel like I get a head rush when I stand up which manifests itself into a headache). Is it just because I'm trying to do too much to soon and need to take things still a bit slower (whereas before I walked slower, I'm now walking at my usual speed)?

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Hi Chloe,

I am exactly the same as you, my head will tell me exactly how much I should be doing. And I am still taking paracetamol and often codeine to stop the pain every day. Unfortunately, from what I read for everyone, this is totally normal after the SAH. I was told by my doctor that it may take months, even years, for all this. I am sure some other people from here will join in and confirm how they have felt.

So ..... your head, like mine, is telling you to rest, take things easy and remember to relax :-D

Alison x

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