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Newbie here! - anyone else here with eye problems following SAH or cramps (my story)


snootybutnice
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Hi everyone,

I'm Nicola age 45 and I thought I'd give you my story. I had an SAH 2 weeks ago today. My partner phoned 999 and luckily, although they assumed a migraine, they took me into hospital for tests, just to be on the safe side.

They found a bleed on the brain and so transferred me to Southampton Hospital. At Southampton they did 2 scans and found no aneurisym so they could not tell me how/where the bleed came from. Around 4 days later they advised I had hydrocephalus and they then did a spinal tap - taking around 2ml fluid (which was yellowy/blood stained) which helped to reduce the blinding headaches but gave me cold sensitivity in my face - rather like sinusitis pressure around eyes, nose, cheeks, forehead and also around my head. It helped to keep a towel on my head to retain the warmth for the next 2 days afterwards. I also had high Blood Pressure although the readings didn't mean much to me - something like 145 over 80, 170 over 90, 155 over 80. I'm not so sure of the second figure but the first figure averaged around 148-155.

Gradually the pain has moved down the spine and settled in my coccyx area - which is great because the headaches are less frequent and less severe but it brings with it very painful spasms/cramps in buttocks and what also feels like cramping pain in the cervix and deep within the coccyx area. When the spasms start it's hard to walk or move. I'm hoping this will quieten down soon as the blood gradually disburses through the body.

I went shopping yesterday for several hours (12-6pm) and was really surprised that I felt energetic enough to do it - I had lots of rests/sitting down but other than 3 bouts of headpain lasting around a minute or so, I felt OK and like my old self. However once I relaxed in the car and got home I had problems getting out of the car due to bad spasms/cramps and I still feel very tired today. I obviously overdid it - but when I 'overdid' it in hospital, ie. like walk too far, I would get so much pain I had to stop. It seems that my body wasn't so vocal this time and I paid for it in the evening and today so I now realise I need to pace myself better.

Today I decided to get my eyes checked as I'm still getting eye strain type pain and my old prescription hadn't been working for me for a while - so I thought I'd best get it sorted rather than agitating my current headaches with eyestrain. The optician wasn't happy with what he saw, and has now given me a letter to pass to my GP to ensure that I am seen by a specialist within 1-2 days, because he could see a haemorrhage in the top of my left eye, and both eyes are showing pressure to the nerve area (he showed me photos they had taken of my eyes showing all the veins etc, and usually you can see a very defined circle, which is the centre of all the nerves in the eye - but in my photos the circle was not clearly defined and this was due to pressure). He said had I not told him what happened 2 weeks ago he would have been sending me across to A&E immediately. Hopefully if there are any problems these will be picked up.

I'm just wondering how many others have had eye problems or the cramp issues?

Thanks

Nic

xxx

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Hi Nic,

Welcome to BTG.

Wow you're so early into your recovery, slow down and rest!

Have you read 'a letter from your brain' on the home page in inspiration. A very good piece of writing.

I was also treated at the Wessex Neuro in Southampton. My SAH was August 2010, I was clipped 2 inches behind my left eye.

My SAH made an existing problem much worse and I've been treated at Southampton Eye Unit since my SAH. I get a very patchy blurry vision from my left eye that goes over my right eye vision. I've tried a new prescription that was very complex but it was too much for my brain to cope with so they reduced the prescription back quite a bit. I've only tried them a few times to see if it helps with tv, it'll be too much to cope with for wearing them outside. So it looks like I have to live with the very long distance blurry vision. I see the Eye Unit again in march.

It's good your optician picked this up and that you're being referred to your gp.

You can always go to Southampton Eye Unit direct on referral from your optician if you want to be seen quicker.

They are a fantastic bunch there.

Yes, I did get a few probs with back cramps and extra pressure, they did another ct scan about 9 days after surgery and I had to have a lumber puncture.

I hope things get sorted for you quickly. But remember you've been through such a serious thing, have patience and understanding with yourself.

I wish you well with your recovery.

Take care and keep smiling,

SarahLou Xx

Edited by SarahLou
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Welcome Nic,

I have a sinus like headache every morning when I wake up which is different than my other headaches. I have some vision loss but I have started to get use to that. My SAH was Sept, 16th, 2011. I did not have a spinal tap but when I was preganant I had an epidural and I had back pain for a year or so after that. I did have some blood in the spinal fluid but I now do not know how they could tell that.

You must pace yourself. I went shopping as well yesterday and have been laying on the couch all day today- literally. Rest is healing, water is good so drink plently of it daily. I have not had but a glass today so I cannot complain how lously I feel today. :)

Good luck in your recovery! I am sure someone will come along soon that can give you more information on your questions.

Drink Up! maryb

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Hi Nic.

I too, have eye problems. Every time I go to my optician for a check-up , he recoils in horror at what he can see.

I tell him to relax, and just do your best to fill my prescription. He always wants to propel me back into the ophthalmic system, but I explain, that I have

been along that particular conveyor-belt, and fallen off the other side.

I have recently been discharged from the ophthalmic department at the Queen's Medical Centre, Nottingham, as I have refused to have the proposed

operation, that would reduce the function of my "good" eye, to match the function of my" bad" eye. It seemed an idiotic solution to me,

risking a worsening of my condition, on the off-chance that things may improve. Stick or bust! I think I will stick with what I have.

I have developed coping strategies to reduce the impact of double vision, and spend my time looking like some, demented pirate or

mad scientist, with one eye open, staring, like a dog , that has just been shown a clever card trick!

The body language is often misread, but I have come to ignore all the negative reactions to my demeanor.

This is my mantra.

I am blind , but not blind enough for a stick.

I am disabled, but not disabled enough for a badge.

I am crippled, but not in any way that anyone can see.

I am disadvantaged, but not in any official category, or any definition accepted by the state.

I am like everyone else on this site, left to recover, without anything, but fellow sufferers support.

You have only just begun your journey of recovery.

I am seven years down the line.

It all becomes easier over the years, with wit, acceptance, humour, and all the support from these wonderful people on this site.

Things will level out and settle down.

You only need one good eye.

Ask a blind man!

All the best.

Bill B. ( Now,fully adjusted to the new reality, that is my life post SAH)

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Hi SBN I too was treated at wessex & clipped like Sarah Lou, unfortunately when I was first seen at QA no one took my headache seriously & I was sent home with no further tests. 10 days later I ended up at the eye clinic as my vision had started to blur & my right pupil was beginning to dilate, a CT scan later & I was sent home yet again although a lumbar puncture was mentioned but never done. I waited 17 days for a MRI scan by which time my right eye was full closed & when I opened it manaually my pupil was so dilated the pain from the light was intense.

I had an MRI & a further 8 days later they rang to say they suspected I had an anni (it only showed up on part of the MRI) behind my right eye. I went into Wessex the next day & was operated on the day after that. My eye opened virtually staight after the op but my pupil remains dilated & doesn't respond to light & doesn't move at the same time as my left eye. I am 19 months post op & the greatest change was in the first few months so now it looks like I will have double vision forever, I wear a patch on my glasses so that I can drive (my left eye prescription is fine for me to drive as long as my right is covered). I can get single vision for distance but anything close up I just get a image over the top & slightly off centre. As I didn't have a rupture its more a case of the damage that has been done to the nerves which control the muscles of my eye. Like Bill it was mentioned about operating on my left eye to make it move like my right, I am not keen on that suggestion either & the orthoptist said my eye was too unstable still to consider it. The only option they have really given me is a cosmetic contact lens which I would not be able to see out of but woul look like a normal pupil.

If you have pressure behind your eyes it could be residual blood from the bleed still, the best thing is to get it checked as soon as possible. as for the headaches & eye pain yes I still get them, stabbing pains behind my eye. Both are lessening now but when I do too much they are always worse.

As for fatigue most of us describe it like hitting a wall, not painful but the utter tiredness that means you cannot do anything else no matter what. AS you were busy you probably missed the signs that were becoming tired but you will learn the early warning signs & take a rest before you become worn out

Hope some of the above helps although my eye problem is probably very different to yours xxx

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Hi all - thanks for your posts really appreciated. Sorry I wasn't able to reply until now, but unfortunately I had another problem crop up earlier in the week and ended up in Basingstoke hospital on Thurs and Friday with another case of hydrocephalus which was putting pressure on my eyes/brain. I was told normal pressure should be 12-18 and mine was 30 when they did the lumbar puncture, so they drained 16ml off. (Took 3 attempts to get the lumbar puncture in, which wasn't so great!). Feeling a lot better now but despite being told by optician that I'd had a haemorrhage in my left eye, I'm now getting more pain in my right eye at the moment but I guess things just need to settle down again. That's my 2nd LP (last one 2 weeks ago) so hopefully it will be my last, fingers crossed, or I might need a shunt. It's put me off booking a holiday for now so I think I'll wait another month to see how things are going before I attempt to arrange anything!

Nic

xx

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Hi there

Warm welcome to the site, glad you found us...

SarahLou is right slow down....

My optic nerve was damaged when I got my eyes testes I got an appt for an hour they were very good, then I went once a year for about 5years now its every couple of years....

things will settle down but it takes time...

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Thanks Sandi. :-) I can't grumble as I'm feeling quite lucky in comparison to many people as I hope (fingers crossed here!!) that there is not going to be any residual problems once the hydrocephalus settles down. If the SAH had to happen then so far I've got off pretty lightly but a few days without pain would be very good LOL. I hate being so tired too. The only unpleasant thing looming to get through is just a blood sample now. Simple-ish. Unfortunately the nurse at the hospital didn't manage to get enough blood out of me to complete the blood tests so I've got to go back in tomorrow morning for them to have another stab at it. It's like trying to get blood out of a stone when they try and get blood from me - they tried in the hand, wrist as well as arm - hopefuly we're not going to have to go to the feet! I'm just hoping it will be pain free as Im sure the pain from them waggling the needle cause me to throw up on Thursday :-(

Louise you mentioned having viral meningitis after an SAH. Were you just unlucky to get 2 serious health problems so close together or is there a possible link do you think? What happened? I'm feeling very tired right now and coming down with a cold so want to be well armed with anything else I need to look out for in terms of symptoms. How did you know you had viral meningitis - just so I can be sure to recognise it if I get it too.

Debbie - not heard of Terson syndrome but I'm really pleased you are getting a bit better. You're going through it still but with any luck you'll gradually get even better than you are now. Big hugs xx

Nic

x

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Hiya Nic

Hope all goes well for you x I had SAH and had coil fitted in 2009....for a year after SAH I slept a lot and drifted iinto dreamlike

state hence hydrocephelus getting worse...so I had a shunt put in.2010....now I am so much better apart from walking ie backache really bad can only walk a little way ..........

but I was told I would never walk....showed them....

So go ahead and show others you will get well and show them you are a fighter..Go get em girl !!!! Good luck Nic xx oh and I got new glasses as eyes got bad lol

Regards

WinB143 xx Keep smiling xx

Edited by Winb143
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Hi Winb

Thank you, i'm so thrilled that you managed to walk after what the doctors said. I'm a great believer in 'doctors don't know everything'!! (verging on distrustful LOL!!). I'm told my eyesight has technically got better and my current prescription is too strong but I now need varifocals - how did that happen I wonder?? (although they did do the test while my brain pressure was at an all-time high so I think that had a part to play - I'll have to get them re-tested once everything settles down). Unfortunately I've become so absent minded of late I've now lost my glasses somewhere anyway which isn't helping. Luckily I can blame it on SAH as I've had hubby looking up and down throughout the house for them :wink:

Hugs Nic xxx

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Hi Nic

I was unlucky & there is a link but it was with me so don’t fret, they left a bugin my brain when they were operating.

I didn’t know I had it I beleive they pumped me with very strong antibiontics for weeks after the surgery for the SAH, hoping to kill it – Im stubborn it didn’t work, & I just collapsed no symptoms no rash it was just like the SAH Pow!

Like with everything if the cold gets you down quickly go to the GP if you have trouble getting passed the reception tell them what happened to you that always makes for a quick entrance to the doc’s chair....

Take care.

Edited by Louise
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God Louise - you really have been through the mill. :-( although you did make me laugh about your comment regarding the receptionists - I'll make sure I mention it :lol:

I've already noticed special treatment. My doctor rang me the other day to go through the events while she was off last week - and said they were chatting about me over their coffee break as they were 'worried'. I felt quite surprised and oddly happy that I'm an interesting case for once. :-)

Nic xx

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Welcome Nic, I am glad you found BTG so soon. People here are loving supportive and understanding. Literally in a leagu of their own.

I had great camps in my legs and butt for several weeks. I put it down to the Lumbar Punctures. I really relate to you there. I can look at pictures of almost anything medical online but those LP make me wince! I almost have anxiety attacks when I think of them.

I was fortunate I did not get hydrocephalus. You need to rest rest rest. I often think I am invinsible only to be reminded by my brain that I over did it. Sometimes it is a mental fatigue sometimes it is physical and sometimes I have no idea which it is.:lol:

My eyes are good. I do get yearly eye exams due to diabetes and there has been no change there. I did tell my dentist about the SAH and they put off doing work on my teeth for 6 months. They didnt want to stand me on my head I guess:lol:

I hope you find the group here as supportive and as informative as I have. If you have any questions feel free to ask.

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  • 11 months later...

Hi there, I have had major eye problems following an intracerebellar haemorrhage. I also lost my speech and had to have pureed food and thickened water for several weeks.

I had to wear a patch on one eye for the first 6 months. Then my double vision reduced and I could go without the patch. I could also walk independently after 6 months. I was prescribed prism lenses but I found these very distorting. I found that as well as diplopia I have ataxia and have issues with moving objects. So I still don't drive although I had my SAH in September 2011. Thankfully my eyes have recovered very very slowly and the double vision is much better than it was, ie much reduced. I hope to be able to drive again in a few more months. I would so love to have some independence! My speech is still coming right - it's still hard work. I joke that my mind is good but my body has taken it all very badly! I still have "balance issues". But things do come right, over time.

Whenever my eyes have been changing, I have had headaches and more than usual fatigue. Evidently you can have diplopia and/or ataxia separately. Very confusing to the specialists. Thankfully I think I know what's going on!

All good wishes, healing takes time and patience. I find that if I get too tired, my vision and my speech are some of the first things to go.

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Rabbit,

Try singing it worked for me, get your fav song and ruin it like I did, my sisters used to sing with me when I was in

cuckooland, I awoke singing mainly Irish songs ? lol that's the brain for you.

Gotta go I feel Dannyboy song coming on. lol

Be Well Rabbit and you Snooty xx

WinB143 xx xx

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