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New member - JustMandy


Mandy Wright
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Hi all,

I'm a new member who has been reading the forum for a week or so and finally going to persevere with posting an introduction. I had a SAH at work on 16/12/14 which came on as a massive headache with stiff neck as I was going outside for a lunchtime cigarette break. I pretty quickly realised something wasn't right and had to go indoors and sit down before starting to feel really sick. My vision was also affected. I was taken by ambulance to QA hospital in Portsmouth where I had a scan before being transferred to Southampton General later that evening. Further scans overnight confirmed a ruptured aneurism and I was successfully treated with coils on the 17th.

The following week or two are pretty much a bit of a blur but I was discharged on Christmas Eve which was lovely for my family but truly I struggle to remember much about Christmas at all. This adds to the feeling of unreality of the whole experience. I have a fancy dress outfit hung up in the bedroom for the work Christmas party I missed, and lost a stone and a half during the first week or two.

I really felt like my awareness was just about back to normal around two weeks after the SAH, or possibly a little later. I was really glad to finish the 4hourly nimodipine which so disturbed my sleep pattern.

I'm left with double vision and reduced stamina as my main mementos and can already see the stamina improving slowly over the weeks. The vision problems are infuriating but I still count my blessings that I'm as well off as I am. The family are wrapping me in cotton wool and I'm sure I'd be doing the same if the positions were reversed.

2014 was an eventful year for me in so many ways. I had started to get more active by taking up dancing and then a Couch to 5k running programme, lost 3 stone, seeing my only daughter married, being diagnosed with type 2 diabetes (diet controlled only at this point) and topped off with a brain haemorrhage. 2015 is going to be different. I'm looking forward to getting my eyesight sorted out and getting my driving licence back, or at least dvla permission to drive again, although wouldn't want to do that yet with the current state of my vision! I've not had a cigarette since the 16th but am hanging on to an electronic one at this point to help me through the coming frustrating weeks or months.

I'm sure there are a million other things I should add here but want to post before the page times out! Thanks for reading this far.

Mandy

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Mandy hi and welcome to btg. Another Portsmouth girl here also treated at Wessex.

Although it's very frustrating you are still very early days in your recovery. I'm 5 years post clipping in June. Much improved since the early days although fatigue is a constant companion just not to the same extent.

I too have been left with double vision, mine was monitored for the first couple of years but I was discharged when there was no further recovery. It's Still possible your vision may improve or that a prism may help you.

There are several Wessex ladies on here, we sometimes meet at the Wessex support group, next one is next month I think.

If you need any help or support just shout on here (or by private message) there's always a lovely person around to help x

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Hi Just Mandy!  Not glad you had to look for a support site for your sah - but VERY glad you found this one.  Uh-oh...cigarette break!  lol.  My sah was June 3, 2014 which, incidentally, happens to be the day I quit smoking forever...lol.  When I came to my senses enough to speak and connive I spent a great deal of time trying to get my husband to sneak me out in a wheelchair to smoke.  It didn't happen although he sneaked himself out several times.  lol.  He has since quit.  Just as I signed onto this today I had told my husband I wanted a cigarette right now.  lol.  Stress takes me there.  Seriously...my doctors told me not even to smell the smoke..don't be around second-hand smoke, etc.  They were pretty serious about it. 

 

I'm sorry about your vision.  That must be maddening.  Mine went a little worse for wear but I only had a few bouts of double.  Maybe yours will just slowly go away as you heal.  It's still so early for you.  Stamina is another thing I think.  I'm still foolish enough to go at it full force on a day I feel well so am not feeling that great for the next three.  Don't overdo is probably one of the best pieces of advice almost everybody here would tell you.  

 

2014 = This is about you so I will save my "horrific year of my life" rant for another time.  lol.  What happened during that year?  Why?  Was it the moon?  Geez!  Things will get better for you.  Take care of yourself.  Don't push yourself.  Save that dress for next year's REALLY EXCELLENT Christmas party.  You'll look beautiful I'm sure.

 

Much love and wishes for a much better year/great health for you and your family.

Carolynusa

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Hi Mandy

I too had been left with some double vision but it has improved in the 2 years since my SAH and is now just periphery. It took me an extra 8 months to get my licence back, when I was perfectly capable of driving at 6 months afterwards. 

Things will get better over time, just try and be patient.

Liz

Edited by Karen
Advice removed
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Thanks for the welcome messages ladies, they are much appreciated!

Gill, thanks for your words on the double vision. I've been keeping my fingers crossed that this will resolve itself in time, or at least can be fixed with tweaks to my glasses. Currently I'm not sure if when I patch I should cover the better eye or the worse one, but will check this out with the optician next week. Covering the good eye makes me feel a bit giddy and is nowhere near as easy as covering the worse eye. I believe there's a Wessex Neuro support meeting this Saturday and we are going to try and make it to that one as the next one isn't till March 28th.

Carolyn, I confess I'm a bit miffed at not being the one to decide which was my last cigarette! :)

Liz, I put the double vision on the initial DVLA declaration form, but will definitely bear your advice in mind when it comes to later down the line.

Thank you all for the advice and support.

Mandy

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Hi Mandy,

A warm welcome to BTG.

I had a ruptured aneurysm clipped at the Wessex Neurological Centre in August 2010.

So it's now nearly four and a half years on for me.

It's been a very long, very tough journey.

I was off work for 14 months.

Things have changed though, the 2yr mark was a turning point for me.

Yes I still get headaches and temple pressure every day. Yes, I still loose my words and struggle with the wall of fatigue. I am still learnng about who I am now.

I also had awful issues with vision, a sort of double vision thing, I was Out-Patient at the Eye Unit for a few years, tried all sorts, prisms etc but nothing worked so I was discharged from them. I have my eyes checked every 6 months now.

I still get some vision issues, it can be very scary, my balance can get very bad too.

But hey! I will not give up! I took the chance on a big career change last year, I am still questioning that move at the mo but I want to fight for something I've wanted for so long.

I need to be more positive!!

Well done you on the life style changes you made before SAH, keep at those and make sure you kick them ciggies!

Remember you are early in your recovery, have patience and understanding with yourself.

Read 'A Letter From Your Brain'... I still have a copy of it on my wall and read it often when I need a gentle reminder of a few things!

I wish you well with your recovery, perhaps we'll meet at the next Wessex support group.

Take care,

SarahLou Xx

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Admin Note to Members:  It is an offence not to declare a medical condition to the DVLA that would affect a persons ability to drive safely. You also could be fined up to £1,000 if you don't tell the DVLA about your condition and you could also be prosecuted if you have an accident.

 

If you have an accident or injured a third party and your medical condition which you knowingly witheld came to light, you would not be insured as you would be driving illegally. 

 

From my own experience with the DVLA I was allowed to hold onto my licence as long as the double vision was corrected to single vision. I was allowed to drive using either an eye patch or glasses with the lens taped over. I also informed my car insurance company who were absolutely fine.

 

As frustrating as the process is with the DVLA the rules are there for very good reason and that's to keep all road users safe.

 

 

 
 

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Definitely sound advice. I did wonder about the withholding information issue. If you do withhold information to DVLA your insurance is invalid. It is just not worth the risk. Better to be safe than sorry.

 

I know it sounds very sad but I recently reported someone who had started with fits to DVLA because, in spite of being told about having to report it, their attitude was "I take the tablets  so I am OK"

That is not my usual thing to do but I worried about the safety of others.

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I believe there's a Wessex Neuro support meeting this Saturday and we are going to try and make it to that one as the next one isn't till March 28th.

 

Hi Mandy,

 

If you manage the Wessex meet you will find the support helpful and meeting others in the same position as yourself is pretty comforting too.  :)

 

Re: Eye patching - I was told to patch alternative eyes, as it can make the muscles lazy in your bad eye and told that it's these muscles that need to be strengthened to bring the bad eye eventually back in line with the good one. I used to patch the bad eye when I was out and about, but patch over the good eye when I was in the house. 

 

xx

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Mandy my bad eye is covered/lens frosted as my good eye meets with dvla standards. I have to be single vision only to be able to drive.

My situation is a bit unusual in that the damage to my nerves (3rd nerve) was caused by an undiagnosed anni pressing on the nerves for 6 weeks rather than a bleed (unruptured anni). Mine is unlikely to get better hence being discharged from eye clinic.

I don't think ill be able to make the meet this weekend, if you go say hi to Lesley and Jane for me x

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I'm sorry if you thought I was advocating withholding information from the DVLA,  I didn't mean to and I know everyone's situation is different. It's just in my case, although I have a bit of periphery double vision, the doctors have always said I didn't need any treatment for it and was fit to drive. But when I ticked the box on the DVLA form to say I suffered from double vision they treated it as a new condition and wanted information about treatment, which held up my application for a long time even though my doctors wrote to them to say I was fit to drive.

 

Obviously if someone does have more severe double vision that needs treatment, then it needs to be declared.

 

Sorry for any misunderstanding.

Liz

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Thanks again for all the positive messages here. We did make it to the Wessex Neuro Support meeting on Saturday and walked in on the consultant talking everyone through a paper survey form related to a research project using an extract of broccoli! I'm glad we went as I have so few memories of my 8 nights at the hospital, but it was pretty tiring with a 2 hour round trip. Gill, I passed on your message to Lesley and Jane. :)

Today, just over 6 weeks after my SAH I went to the optician this morning who reviewed my double vision and he's going to refer me to the orthoptist through my GP. Apparently the divergence is so great that he wouldn't be able to correct using my glasses. I'm alternating patching as Karen suggested and it makes so much sense to patch the good eye when I'm at home, but it's incrdibly tiring.

This afternoon my beloved partner, who has been through such a difficult time, took me to my work so that I could say hello and show friends that I was still alive. The daft man preferred to sit in the car, getting cold, and although I'd said that it would probably take me at least an hour, it took nearer two! It was truly lovely to see so many friendly faces but I was shattered by the end of it. It felt like my mouth was tired of talking! I know I overdid it, but a bit of me felt like I owed it to them. I still had to cut the visit shorter than I'd have liked as I knew I couldn't stand and talk to anyone else. I'll go back again in a few weeks but I'll make a point of sitting, and perhaps limit the time more.

Best wishes,

Mandy

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  • 4 weeks later...

It's now just over 10 weeks since my SAH and I wanted to post an update here. There are so many things going round my head that I want to write them down - who knows, others earlier in their journey may find something useful, and I always feel better writing things down (I used to be a terrible list maker) and getting them out of my head.

Physically I continue to have the same issues with diploma or double vision. I wear a patch over my good eye when at home, ie most of the time, and patch the bad eye when I go out. I am not sure if it is a side effect of the patching or double vision but I have some issues with balance and, slightly less of an issue, some coordination problems.

I have some mild problems with speech, particularly if I'm stressed, and it feels as though I'm trying to talk through toffee after a while, and sometimes struggle to find the right words. It's not a major problem but it's a reminder of what my brain has been through, should I start to forget. At home, and with loved ones, it doesn't seem to affect me, but perhaps I don't talk to them as much as I should?! :)

Stamina, what stamina?! I have none, it seems. If I wash up or cook dinner then I need to sit down and rest afterwards and it was a mistake to do a risotto the other night standing over a hot stove stirring for half an hour.. But the end result was good! In the early days I made a point of going out for a short walk in the evening in an attempt to build up my strength. That seems to have disappeared off my radar as I've felt stronger, but I really should make a point of getting out and doing more.

My back, already weakened by a pre-existing issue with hypermobility syndrome (interestingly I saw a post somewhere that suggested a possible link between connective tissue issues and SAH) is suffering due to my reduced activity levels. I don't relish going to bed any more, partly because I don't feel tired at bedtime, and partly because I know that in around 4 hours I will wake up with pain in my back where my ribs are attached. The only thing that really resolves that is getting up but I generally stay in bed dozing off and on and keep changing my position in an attempt to ease the pain.

I should state that this used to happen long before the SAH. I was going to take some ibuprofen the other day and then saw that it was contraindicated with a history of stroke. I'm seeing the GP tomorrow so will ask her if there's another anti inflammatory I can take, or perhaps I'll ask the pharmacist. I think what I really need to do is find a form of exercise that is compatible with my current state of health, but it's not easy, is it.

Psychologically I think I'm doing pretty well, so long as I don't think about things too much. I know I'm lucky in terms of where I am following my SAH, but I sometimes go into a bit of a mad panic thinking of all the things I should do, just in case. Sorting family photos for the kids, sorting out his divorce (20 years late!), apologising to a couple of people, things like that. I did finally through out all the bathroom miniatures collected from hotels that we will never use! :)

Practically, I saw the Occupational Health advisor at work this week and was reassured to find that she seemed to fully understand the implications and had what sounds like a realistic plan for a phased return to work, starting slowly and increasing only as fast as I am comfortable with. I won't be starting back until my review with the Neuro team at the hospital on the 10th March. She also suggested that I invoke my Bupa to fast track some advice and/or treatment for the double vision. This has proved slightly challenging though; I managed to get the private referral from the GP and get a code from Bupa, only to find that it's not an ophthalmologist that I need to see but an Orthoptist, and the closest Bupa approved one is in Guildford. I might end up paying to see the one in Southampton while I wait for the NHS referral to come through.

One vaguely amusing thing happened recently. While I was in hospital my daughter made a point of telling me that the nurses had advised that they removed my Mirena coil and that it was in a pot with a piercing they removed at the same time. I checked with the nurses at the support meeting and they said it was probably due to a slight increase in risk of DVT. They said it would be fine to get another one as it wouldn't be a problem for an MRI at 6 months. So I sorted my Bupa appointment with the Gynae consultant, not relishing the idea as it was originally inserted under a general, only to get there, and to be told it was still in place!!!

Oh, one other thing that made me laugh... My other half has been treating me with kid gloves following the bleed and was more than a little anxious about resuming, ahem, relations. I ordered a copy of A Dented Image not long after my discharge, following recommendations on here, and he pounced on it once it arrived. After a few days he said he'd wished he had read it sooner, after reading of a gentleman who had his bleed after relations and who was determined to get back on the horse. Unfortunately when he approached his wife he was advised that he'd got back on the horse the previous night. My other half said he wished he'd been able to use that answer to me! We've tackled relations once since then and I think that's put his mind at rest.. My brain isn't going to explode again! :)

Finally, I've put most of the weight back on that I lost in hospital, almost a stone and a half, which is annoying. Unfortunately I seem to be hungry a lot, and get the shakes a bit, and with the colder weather I don't fancy a salad at all! I made a stew and dumplings last weekend and thoroughly enjoyed it - I've not had a dumpling in a year, at least! Oh, and I have an urge to bake.....

If you've made it this far, well done... See I said I had a lot going around in my mind at the moment, and I've probably still missed things!

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Mandy there is an orthoptist dept at qa. I was there for the first year under a cons too. Jill the orthoptist is lovely so might be worth getting a referral there. I spent a long time plotting points on a graph in.a mirror but unfortunately they couldn't help me at all.

I have the mirena too, I checked with the nurses at the brain and spine foundation before having it fitted. I'm due.for a renewal in October.

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Hi Gill, thanks for the response. Typically I've got myself in knots over the orthoptist due to the initial rerferrql to an opthalmologist who I could have seen in Chichester at the Nuffield, but if I wanted to see his Orthoptist I need to do it in Southampton. I've still got an NHS referral that I'm waiting to hear about but that was started 4 weeks ago.

As for the Mirena, I wouldn't want to be without it as it made a huge difference to my peri menopausal issues of flooding (sorry if ats too much info) and irregular cycle. I just felt a bit of a nit going to get it out back only to find it was already there! The nurse pointed out I could always check myself for the strings but I didn't think to given we had been told it was removed! Ah well, you have to laugh. :)

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Just Mandy or Mandy,

 

You have done well, be proud of yourself.

 

My back aches it stops me walking but we will get there with BTG's help.

 

Never give up Mandy, it's a long haul but we can make it !!

 

I knew I was getting better, my lovely hubby started moaning again lol xx

 

Be Well and keep smiling.

 

Winb143 xx

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Hi Mandy :)

Thank you for posting an update, your post is excellent and will certainly help others.
You should be very proud of how you are coping at such an early stage. Double vision is horrible and as you say it makes you feel dizzy, sick and affects your balance and coordination. I suffered from this for quite some time.

Thank you for sharing :) its really good to read how well you are doing and I love your sense of humour !

Take care xx

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10 weeks . Time flies but then drags doesn't it ? Lovely to get the report of how you are doing. The speech, balance, sleep, loss of words(aphasia) is so so common and time will change and heal you and hopefully improve them all for you.

Your Hubby sounds lovely and amusing and a great support but I agree it is scary for all concerned the 'first' time and to be honest my love life even now is far from what it was prior but I am hopeful given the right time of recovery for me I will eventually regain previous form!

Some Tips from me. When the words go, rest. It's a sign you are over exterted, still is for me.

Try to focus on one thing at a time and build in the siting down and breaks into what you do the early days, make it a habit. So peel the potatoes , sit down, yes it slows the task it but it really helps.

Sleeping propped up to sleep helped my back pain , a heated Wheatie bag and a gentle back rub( hubby?) wss helpful too as I also have a level of hyper mobility but I took ibuprofen right from outset , it was prescribed by my neuro team to balance with the other pain med but do check it out before hand with Your gp.

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Thanks Daffodil, for the helpful tips! :)

Time does seem to run differently now, although the Mon-Fri stretch goes quicker than it did when I was working, the weekend still flies by. I like having the other half around but possibly push myself a bit further at the weekend, and am less likely to pace myself well when people are around.

I'm sure you'll regain previous form with time. :)

Mandy x

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