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Sallios

Auras/Follow up appointment

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I had SAH with coiling and EVD 11 weeks ago. How long before I should get a follow up appointment?

 

My GP says I should have one as does my contact from the Stroke Association and someone at Headway. I still have back pain although it’s not as bad as it was.

 

What’s worrying me more and more are the auras. They are getting more frequent around 3 times a week. My GP knows about them and says to ring for a follow up hospital appointment.

 

I keep trying but all I get is an answerphone and I leave a message but no appointment materialises. At a bit of a loss to know what else to do. It’s like a brick wall.

 

Does/did anyone else have frequent auras ? 

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There should be someone at your GP's who deals with appointments. Ring them again and ask for them to chase it up. I had a similar problem and the person at the GP's who deals with the above told the department that she was putting it all on my notes and hey presto, I got an appointment for the following week.

 

You will have to keep pushing. 

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Thanks Super Mario. The admin team at my surgery have apparently been on the case for the last two weeks but to no avail ☹️ I’ll keep trying. 

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Keep pushing the admin team to keep it foremost in their minds. 

I took them about 6 weeks to get me an appointment. 

 

Another ploy could be for you to contact PALS at your treating hospital, they will chase it up for you and are successful.

 

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Hi Sallios

 

If you're in the UK you should automatically get a follow up appointment and/or a scan to see how your coils have settled in, usually between 3 and 6 months after the coiling.  

 

Can you describe these auras you are experiencing?

 

I experienced auras immediately after my coiling which was 11 years ago. The first episode whilst still in hospital.  I would describe mine as crescent shaped, silver and black zig-zag flashing lights and it would continue flickering for anything up to half an hour.  Sometimes there would be one crescent, sometimes 2 or even 3 on occasions and whatever direction I looked they followed my vision so there was no escape from it.

 

It was still there if I closed my eyes or covered one eye.  I too was worried about the frequency of these episodes and not knowing what they were or what was causing them.  I began recording the frequency, the length of each episode and what I'd been doing at the time - the latter didn't prove much as I even got them during the night as they woke me up.

 

I did mention it at my first follow up appt, but they didn't appear too concerned saying it was quite common following an sah/coiling.  As I was  being monitored annually and I was still having these auras 2 years later, I was referred to an ophthalmologist at the hospital who confirmed it was the aura of migraine without the headache.

 

Following correspondence to my GP I was prescribed medication and was told it wouldn't completely get rid of them, but at best would reduce the frequency by up to 50%.    I'm still on this medication and apart from one episode last week I don't recall having any others this year which makes me conclude that the reduction for me must finally be nearing 100%. 

 

I hope you succeed in getting an appointment soon,

Take care,

Sarah

 

 

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Dear Sarah 

Thanks for your reply. My experience of the auras sounds very similar to yours. Started in hospital and has continued ever since (11 weeks since SAH) getting more frequent. They start as a small flickering blob in the distance which quickly gets bigger and bigger until it covers my vision. Both eyes involved: open or closed. Zig-zag silver/black ovoid which flickers. Lasts between 20 minutes and half an hour but no headache.
 

It is reassuring to know that someone else has the same thing and that you are still OK. Unfortunately I’ve looked this up on Google and it says that aura without headache can be a precursor to a stroke. So this is preying on my mind. Like yours my GP didn’t have much to say about it. I’m still waiting for my follow up. 


So pleased to hear yours are finally reducing in frequency. 
 

Thanks again.

Sally

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Sally, to be honest, Dr Google is not your best friend. The answers are not specific to you and cover a very wide range. Tempting as it may be to consult Dr Google, don't. Wait until you have a face to face consultation.

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You’re right we should all avoid Dr Google but the problem is once you’ve read it’s hard to forget it. I just hope I can get my follow up soon. 

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I also read that on Google Sally, but like you say I'm still ok and I've had literally hundreds of episodes.  I'm having an angiogram on 24th October, I just hope that doesn't set them off again!

 

Sarah

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Hi Sally,

 

I too have suffered with auras, I am 5 years since my SAH and they started about 2 years ago, it really scared me when it first happened as i suffered flashing lights when my bleed happened, i was in a panic thinking it was happening again.

 

I went to see my GP and he explained it as migraine, panic over, he didn't prescribe me with any medication and asked me to monitor how often it happened, I have only had 2 or 3 episodes, I also don't get a headache and my zig zag is very bright colours, usually lasts about 10 to 15 minutes then goes away, it still worries me when it happens but I try to stay calm in case I make it worse.

 

I do hope you get your appointment sorted and manage to talk to someone very soon.

Good luck

Love 

Michelle xx 

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Dear Sarah

Good luck with the angiogram. I hope it all goes well and doesn’t set off any auras.

Sally

 

Dear Michelle

Thanks for your response.

The auras are worrying but GPs don’t seem to be too concerned. 
 

I hope yours continue to be few and far between. Good idea to stay calm while they are happening.

 

Sally x

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Really disappointed tonight: haven’t had an aura for six months and I’ve just been woken up with one. Trying not to be scared. Also feels like my brain is being squeezed slightly. Just when I thought I was getting somewhere. 

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Hi Sally,

 

So sorry to hear that you have had another episode of aura after not having it happen for 6 months.

 

It is quite scary when it happens after such a long break from them.  It happened to me again just before Christmas, it just came on after I had been bent down cleaning out a cupboard.  Like you, I felt like my brain was being squeezed and that is the first time I have had that happen.

 

This last one also gave me a strange tingling in my forehead which I've never had happen before. As this was during the day I just sat myself down and let it take its course. Sitting with my head back and my eyes closed seemed to help me relax.

 

I have never up to now been woken up by one.

 

I hope things have settled down again for you now.

Love

Michelle xx 

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Thanks Michelle for your reply. It’s really worrying and easy to wonder if it’s (SAH) happening again. Guess it’s a case of keep calm and carry on. 


Wishing you well

Sally x

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Hi Sally,

 

I'm late here... again.

 

Please don't worry about migraines.  I had them for years and years beforehand. Often due to oestrogen - I got many more when on combined contraception.  Usually the full aura, but not always with a headache.  

I've not had many in the last 10 years.  

 

However I did get some really scary ones this year - but this means a migraine starts with different symptoms - something like a brainstem aura.  I'm so glad it's a migraine and not the stroke I thought it might be.  I think the SAH gives you different symptoms from what you had before.  

 

For migraines, try and see what might cause it.  If it does start, make sure you take time out and have some rest.  Calm always wins.

 

Fiona x

 

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Dear Fiona

Thanks for your reply. After having SAH it’s easy to fear that the slightest pain in the head might suddenly develop into something much worse. Nine months in I still get headaches but take them more in my stride for now. 
Best wishes

Sally 

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