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December SAH - new member Ruth


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My name is Ruth. I am 48, married with two children, 10 and 6. A bit overweight but otherwise happy and healthy.

I suffered my SAH on 2 December. Lying in bed, suddenly my head felt as if someone had dropped a concrete block on it. I turned to my husband and just matter of factly told him to call an ambulance, that I needed to go to hospital. This must have been about 11pm. Hospital notes show that I was admitted at 5.15am on 3 December. In hindsight all the classic symptoms of SAH were present, thunder clap headache, sweating all over (even between my toes, or so it seemed), vomiting and photo phobic. They just didn't take the call seriously. Was it a migraine? Would call back.

 

I was unaware of this, just of the increasing pain and wondering why I wasn't being taken to hospital. When the ambulance did arrive, there was an offer to carry me downstairs over someone's shoulder but I couldn't bear to speak let alone move. They must have given me something intravenously as I do then remember being in the back of the ambulance in a dressing gown instructing my husband to get my mobile and the charger, one of the medics sweetly suggested that I might also need something on my feet. We live between two hospitals. Just as they were about to close the door and set off my husband asked where they were going to take me. Oh, where would you like us to take her?

Next thing I remember is being pushed along on a trolley, being told to squeeze someone's hand and asked if I knew where I was. Not knowing which hospital I had been taken to meant I launched into a long and complicated tale (but I now realise it was all part of checking my responses post surgery).

I needed an EVD for 12 days. No aneurysm found but consultant believed(s) that extent of beeding indicative of one so have had two angiograms as well as MRIs of skull and spine (back to back MRIs were a hideous experience when so sensitive to noise), ultrasound of kidneys, various CT scans to no avail. They were waiting for spinal pain but thank goodness avoided that and the need for a shunt. Third angiogram was booked for two weeks after my discharge only to be cancelled by the radiologist in the absence of the consultant.

 

Follow up appointment with consultant was therefore a bit of a non-event last week. He wants to push for this third angiogram but it will need to go to group discussion. A few more weeks to wait for answer on this point and then a date for the angiogram (or not). Was also disappointed to learn that use of EVD means no driving for six months.

So. That's my tale. Was home in time for Christmas (just as well was still on nimodopine so could play Father Christmas - they would NOT go to sleep...). Did find that initially could not watch TV or have a conversation with more than one person. Could sit at the table for a little while then went back to bed. There were lots of visitors.

As my blood pressure was so low (always been rock steady before) had to have nimodopine every two hours for first 12 days. My little Samsung was so useful - iPlayer radio really helped (after first few days) as did a sleepmask and the loan of some noise limiting head phones.

Today is first day without any paracetamol. Drinking gallons of water. Self employed online retail so am doing a few hours each day with helpers. Back home for lunch and rest. Collect children from school. Give them their tea. Once husband home have another rest. Children to bed. Supper together then early bed for me. Yes. I am lucky and am sleeping like a baby (have endured years of sleep depravation with the children so was dreading the insomnia) it's a real effort to make myself wake up and go to the loo sometimes. I do now have tinnitus but am focused on getting stronger and feeling fitter before I start to worry about it.

I am grateful to be given the opportunity to write this down. It's so strange to be unable to think and process thoughts in the way I used to. Yes. Getting better but aware that still disconnected in many ways. It is also interesting how the brain "tricks" you, seeing words that aren't there or even a toy that on second glance you see is something else altogether.

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Warm welcome Ruth and thank you for sharing your story, pleased you are starting to make progress on your recovery journey. It must have been a huge shock for you all, I also had a thunderclap headache and thought I'd been hit over head with something, initially thinking someone had attacked me. My sister had previously experienced such a headache which once I got over initially shock I realised it could be serious. I did have aneurysm which was coiled last year, I have been very lucky left with slight issues.

It is good to have somewhere to share with people who have had some shared experiences, whilst everyone is different there is such a wide range of people on here, who will I'm sure will offer support. Take care to pace yourself and take as much help as is on offer. I hope they quickly sort out whether you receive angiogram so you at least know what is going to happen.

Do let us know how you get on.

Take Care

Sharon x

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Welcome!

 

I am new here too, so I know how good it feels to let it out to people who understand.  When you mentioned the blood pressure, it reminded me that while my blood pressure stayed ok, my heart rate dropped so low that in the ambulance between hospitals, they head the paddles over me (so my wife tells me).  For the next two days it dropped below 29 when I would sleep.  But the heart was fine, just getting the wrong signals from the brain.

 

I had an EVD for 10 days, but no driving restrictions when I got out.  So maybe that was something else with you.  I didn't have the sensitivity to light and noise that you did, so maybe that is why.

 

I  hope things get better for you quickly!

 

Chris

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 Hi Ruth :)

A very warm welcome to BTG.

Thank you for sharing your story with us.

You are doing very well to be back to work so quickly, well done you :) as you say, keep resting up in between doing things and drink plenty.

 

Hope all goes well at your next Consultant appointment and you get some answers re angiogram.

Take care and keep in touch.

Tina xx

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Hi Ruth

 

Glad you found BTG, certainly been a help to me so hopefully will be likewise for you. Sounds like your episode was very similar to mine, no aneurysm and hydrocephalus. I too had an EVD, 2 angiograms, numerous CT's and MRI. Nothing showed up despite it being a big bleed. I take it you live in the UK? If that is so I am afraid you will definitely not be driving for at least 6 months.

 

Having and EVD is an automatic minimum 6 month revocation, in fact I didn't get mine back until late November which was 9 months. DVLA are notoriously slow so reapply at around the 3 month mark (which I did) and hopefully it won't be delayed too long. There are lots of threads on this subject on this site, so take a look! I think Chris lives in the USA where the rules are different.

 

Sounds like you are doing well, keep up the gallons and rest. I am coming up for a year and although I know I am not the same, I am beginning to like the new normal. A life changing event which we should all be glad to have survived.

 

Look forward to hearing more from you

 

Clare xx

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Ah well. Yes, live in UK, in a village with a bus service that's about to be axed.

It is so difficult to know *when* you've done too much. Certainly know the day after though! Also, because I look and sound like the old me, I'm finding that people expect me to be like the old me. Learning how to manage other peoples expectations is not something I was banking on!

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Hi Ruth and welcome to BTG.

 

I had my SAH almost a year ago. Like you no aneurysm was found for it (although it turns out I do have an un-ruptured one in my brain) and I also had an EVD. Unfortunately as I couldn't come off it I also ended up with a shunt.

 

Lots of things you are experiencing sound very similar to me when I came out of hospital - couldn't have a group conversation, watch TV, go out to busy places etc. Over the past year all of these things have improved for me, it just took a while. I also slept an awful lot when I came out of hospital (around 16-17 hours a day) and even 6 months down the line I was sleeping 12-13hours and nothing would wake me. More recently this has gone back to a much more normal pre-SAH sleeping pattern.

 

I also have sympathy for your driving position. I live in a hamlet with no public transport whatsoever and am still waiting to get my DVLA approval. This is part is probably due to the added complications I had and the fact that I have been left with some physical and cognitive issues. Clare is correct about the DVLA and I would also recommend getting in touch with them and sending off your information as early as possible.

 

Good luck with your continued recovery

Gemma

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You seem to be doing well Ruth.

 

Do things at your pace and No Stress !!

 

Laugh and sing as often as possible and think happy thoughts like the times you have laughed until tears fell  (tears of laughter).

 

Many times when down I have come on here and left laughing, so keep away from the doom and gloom tales.

 

We are here to help each other so Be Well and Good Luck on your recovery.

 

All the Best

 

WinB143 xx xx

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Thank you all for your replies. It is comforting to hear your stories and advice.

Had been feeling like the old me for three days or so but didn't that come and bite me today!? Heard a dog chasing some of our chickens, ran out of the house in stocking feet, lots of shouting and rushing about. Now I feel completely worn out; resting upstairs snuggled under a throw. Was very upset and cross as we had one killed the other day (found lying in the run surrounded by feathers). First bit of real physical exertion in nearly eight weeks mixed with the shock I suppose.

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