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Hello!

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  • Our Support Information pages are here to help you. You may find useful information and tips that you might not have been aware of about your illness or to support you in caring for a loved one. We also encourage you to share your personal SAH story, so please do share your experiences with us.


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Jenni - my story 11 weeks on


JenniH23

 

Hello, on the 2nd September my partner and I had just been intimate and I went to the bathroom to remove my makeup when I started with an unbelievable pain in my left eye. This soon spread across the top of my head and down the back. I was violently sick and in pain but thought it was just a bad headache.

 

I tried to sleep and in the morning went to the doctor who told me to go to a&e for a ct scan. I was too embarrassed to mention the intimate part to any of the doctors and I now know this may have helped them diagnose my condition. The scan came back clear and the following day 2 doctors tried to do a lumbar puncture but due to slight curvature of my spine failed.

 

They sent me home to come back next day for an anaesthetist to do the procedure. When it came back with blood in the spinal fluid they said it might be contamination from the day before. I was admitted for a MRI scan the following day. All this time I could feel myself going down hill. I sat all the next day for nothing to happen. It was only when my partner complained they did referral to specialist hospital. I was transferred during the night and had mri the next morning.

 

I was told I had a 5 mm aneurysm that had ruptured and went in to surgery for coiling the next day. It had taken 5 days to diagnose my condition. My recovery has been the hardest 11 weeks of my life I have developed blind spots in my eyes and this having a massive affect on everything I do.  I have bad eye strain and my brain just seems to seize up with trying to adjust.  I don’t know how to move forward. 

 

I have a 6 yr old daughter who needs her mummy. I keep beating myself up over not getting over my embarrassment by telling the doctors more information and wonder if my recovery may have been different. I have an ophthalmic appt in January and my optician has told me to let things settle. But I feel this is it now, no driving & loss of my independence.

 

My partner has been amazing but I feel so sad, lost and scared. 

Xx



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Hi Jenni, don't be embarrassed as you'll probably be surprised as to how many people have had a SAH after being intimate. It's any spike in blood pressure....you could have been sitting on the loo and straining, in the gym, gardening ... etc.

 

If you've got an aneurysm lurking and about to rupture, it will do it with any spike in blood pressure....whatever you're doing at the time ... lots of people on here that have had the SAH with different circumstances and post sex is one of them and you're not alone. I've been running this site for many years and we've heard everything, so there's no need to be embarrassed...we're here to help!

 

So, go to the Introduce Yourself forum or the SAH forum if you want help and support with a specific problem. 

 

And no, your outcome wouldn't have been any different if you had revealed to the Doc that you were intimate before the SAH ... It's as simple as that.... having a blood pressure spike could have happened whatever you were doing at the time, as the aneurysm was there ... don't feel guilty. We've had the fittest of people on here, who were in the gym, bike riding or the same as you, or on the toilet and many other examples.

 

It honestly does and will get better for you ..... xx

 

 

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Hi Karen I just keep thinking if id said they would have taken me more seriously and I would have been treated earlier. I didn’t look like someone with a ruptured aneurysm as I was walking around complaining of a headache. I can’t understand why the brain scan was clear. Most stories I’ve read where someone has colllapsed and been operated on straight away seem to have a better recovery. Sorry I just can’t help thinking I made it worse. Thank you for your kind words. Xxx

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Hey Jenni, you didn't make it any worse and some people have a post coital migraine head, which is nothing to do with a SAH.

 

There are lots of different accounts on the website of peoples experiences. I wasn't operated on straight away and it wasn't straight forward.

 

I can only say, that you're early days into recovery ... it can take 3 months for the blood to fully dissapate down the spinal cord. Keep your fluids up/hydrated and make sure that you rest up when you need to.

 

I would say that yes, you need to let things settle - re: eyesight. They're looking after you and understand your situation. 

 

There's not many of us who've had to stop driving long term ... keep positive and even at 14 years post SAH, I'm still seeing improvement. x

 

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Jenni, 

The fact you’re were walking and talking when you went into hospital meant they didn’t recognise the symptoms ,not great I know and others have experienced similar and then sadly they couldn’t get the positive confirmation of a bleed with a LP . As I understand it a CT scan isn’t as clear as a MRI to confirm blood in ventricles and arachnoid space and whilst all bleeds are incredibly serious , depending on the grade of the bleed it may mean less blood is present , as does where the bleed is located, there are so many variables so often the LP becomes the check point if unsure. 

 

My daughters were 6 and 9 when I had my SAH and they had to adapt to mummy being very poorly for a long time An day unable to care for them and then not driving for well over a year and generally not able to do everything as I did and everyone here told me not to worry, that they would weather it, just to Be honest with them and kind to myself as I healed .

 

They were right. My girls are 16 and 14 now and they have grown into compassionate and independent young women, and a deal of that is down to their experience of supporting their mum, and that’s ok, and you know what ? They wish it hadn’t happened but they also see the value of having lived through it. Life goes on. We learn, love and go on. You will too. 

 

The BTG gang knew when they gave me that advice over 7 yrs ago that the best way to recover and adapt to change is to look after yourself and don’t beat yourself up and about the whys and regret. Your little girl has her mummy, that’s the key thing to celebrate , nothing is going to change the fact that our bleed happened, so slow it all down, don’t worry about what you could have done differently. 

 

 

 

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Hi Daffodil

 

Thank you for your message it’s given me hope that I’ll see my little grow up.

 

I'm so nervous about my first MRI in Feb, 6 months after the bleed. I worry I might need more coils or something else might be there. I go in a spiral of worry about my vision to my headaches to my coils to getting another aneurysm. I haven’t had normal sleep as my worries resonate in my dreams. I’m trying not to worry but it’s so hard. 

 

Keep well & continue with your recovery. Xxx

 

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27 minutes ago, JenniH23 said:

I'm so nervous about my first MRI in Feb, 6 months after the bleed. I worry I might need more coils or something else might be there. I go in a spiral of worry about my vision to my headaches to my coils to getting another aneurysm. I haven’t had normal sleep as my worries resonate in my dreams. I’m trying not to worry but it’s so hard. 

 

 

For you to have those worries is only natural. I don't think there is anyone on this site who hasn't had those worries.

Yes it is hard not to worry and regardless of what anyone says you will still worry.

You should have peace of mind once the MRI is done and you get the results.

 

Have you thought about asking your GP for counselling to help you over those worries so that you may be able to sleep? Sleep deprivation will not help your recovery.

There is no shame in counselling, we have many members who have taken the opportunity of it and benefitted. 

 

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Oh Jenni. I'm so sorry the system failed you those first 5 days. How scary and frustrating for you and your partner. The amount of awareness needed- even in the medical community- is a real thing.

Be kind and patient to yourself as you adjust to your new normal. 

 

Be gentle....wishing you and your family a happy holiday.

 

Best,

Liz

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