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Severe headache, don't know what happens next


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I know for a fact that our system in the US is not infallible, but I find this situation unbelievably scary and incomprehensible. Are there no other options or facilities to go to? I have no idea what all of that medical terminology means but I do know that any suspicion of SAH should be taken seriously. It is not only the initial damage that can be a problem, but secondary damage as the brain reacts to the bleed.

 

Really Sophie, you must find yourself some qualified medical attention. Do you have family that can help you?

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Sophie I hope you've now been to a & e. You cant just wait & see what happens...

 

I had the most painful headache, neck so stiff I couldn't move it. My gp sent me straight to hospital & afterwards told me she'd never seen nasah before. I had ct, mri which showed small bleed. This was finally confirmed by lumbar puncture. I was given Nimpoopine to reduce risk of further bleed. I had angiogram in London hospital & fortunately nothing else was found.

 

You need this peace of mind & know what's happening. Doctors /hospitals can be so frustrating. Only you know how you feel, please get checked out asap...take care x

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Sophie,

 

I am hugely disappointed at the way you have been treated.  It simply isn't good enough.  I do think, though that you should have stayed until a consultant saw you.  If I were you, I would go back but only you can make that decision.

 

I also think you should complain in writing to your local health trust and copy in your local MP - enclosing a copy of your SAH letter and detailing the wretched way you have been handled.  Send them by recorded delivery so they can't say they haven't received them.

 

If there is even the slightest change in your condition - get back to the hospital, blue lighted if necessary, but get there.

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Sophie,

 

I`m with all the above on this one, I do think you should have stayed at A&E and if I were you I would certainly go back, You need to forget about waiting time, as Super Mario said yesterday, this could be a life threatening condition.

 

You have so many questions that need answering, they should never have discharged you and if I were you I would be making a complaint. I think it`s shocking the way you have been treated, you really should do something about it.

 

Sophie, do you have someone who could maybe go back to the hospital with you, as you can see from the posts here we are all very concerned for your welfare, you could maybe do with a little support if you do go back, it`s just a thought.

 

Like Macca said, the slightest change in your condition you really do need to get to hospital, 999 if necessary.

 

Please let us know how you are,

Love

Michelle x

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Hi everyone, 

 

happy new year! I wish you all good health and happiness. 

 

I still get headaches but they are mild, the ache in my neck has gone. So i am so confused as to what is happening. Is this even a sah? I'm baffled. They saw a small volume of what I'm assuming is blood, in the subarachnoid area, thus causing concern for a referral.

 

However other then when I was firstly admitted I haven't had the symptoms everyone else has had, mine have been mild and on and off. I will be writing a complaint none the less as even if it isn't a sah it is still unclear as to what it is and that isn't good enough. 

 

As soon as I see a neaurologist and find out I will be keeping you all updated as I'm sure you are all just as confused as me 

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Happy New Year Sophie. Glad to hear that your symptoms have not worsened. I am sure you are very confused, I know I am ^_^. You really have had a bit of a run around with all this and I feel that it may well be worthwhile lodging a complaint about your treatment.

 

I am at a loss as to what you have actually suffered and can only hope that as you were not referred immediately to a Neuro unit, that there was no cause for concern. Very strange though and I will be interested to hear what the Neurologist has to say.

 

Hope you keep well and are enjoying your New Year. Don't forget though, any worsening of symptoms, go and get help immediately.

 

Clare xx

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Sophie,

 

I have just been reading all the posts on here and I just hope all is well with you. I suffered what is known as a perimesencephalic haemmorage, it is a bleed which they tell me has no known cause and no treatment. They didn't get to that point straight away.

 

I got a sudden headache on the back of my head, within a second or two I felt which I can only describe as something like water trickling inside my head. Then pain in the neck and felt ill. I found it hard to walk, sit, stand or lie down, I phoned my husband to ask him to call me every hour to see if I was ok as I knew I was poorly but never thought of a brain haemmorage.

 

He came home, but he was 4 hours away, I thought I would be OK, but I packed an overnight bag, he took me to A&E and got a receptionist who queried why I was there. I waited 2 hours to see a nurse who took bloods, checked my eyes and was so good to me, asking if I had been sick etc.

 

I was beginning to get nauseous, and she said if I felt worse to tell the receptionist. An hour later I was feeling sick and couldn't hold my head up but I was the first person they called out of the 4 people she had checked obviously prioritising who was more in need. I felt awful for others who had been there before me.

 

I saw one doctor, sent for ct scan which was then viewed by the duty neurologist at a different hospital, he said to get me across by ambulance. At that point no specific haemorrhage name was put to it. I was put in neurology high dependency unit and a doctor came to see me in the middle of the night and got me started straight away on nimopodine (? Spelling), just incase I had had an aneurysm.

 

Next morning I was taken for a ct scan with contrast which showed no aneurysm but they continued the tablets for a few days, along with, painkillers every for hours.

 

I was in hospital 5 days and not allowed to drive until the consultant gave the all clear and DVLA contacted them. So a lot of issues go along with any brain haemorrhage. I eventually had an MRI scan later that week which confirmed the perimesencephalic haemorrhage, so no operations, shunts, stents or angiograms. They think it was a venous bleed. But the fact is I couldn't drive until he said 3 months later.

 

Now 15 months down the line I still have neck ache and twinges and continue to have MRI scans as they check something seperate to the haemorrhage but the fact it was so prompt at the start, everything followed through swiftly. I am sorry to ramble, but I think it is necessary to make sure about your condition as it could affect your insurance should you drive.

 

Please follow things through, my family is full of medical professionals but they are none the wiser on specific neurology terms. They all hear of someone having an aneurysm, a stroke, a tumour, etc. etc. but when I mention a SAH or in my case perimesencephalic they have to look it up.

 

I think even to phone PALS (patient advisory liaison services) they will help you take the next step.

Please do this as recovery is slow and a tiring process no matter the severity. If it is not a haemorrhage then great, but you need to get to the bottom of this or to us with neurology problems get to the head.

 

Irene 

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Hi Irene,

 

I am so glad you posted your story, it has helped me make some sense of it all. I had a CT they noticed a small volume of blood and didn't act on it. That confuses me and even more so that no one will discuss it with me. It's been a week since a referral was made and I haven't heard anything yet.

 

I still get headaches, although they are mild I get worried in case they turn into serve headaches again. I am thinking I may have Perimesecephalic NASAH the more I read about it, however I still need that confirmation.

 

Could I ask, how soon after can you travel? Do you need to declare it when you travel? I want to book a holiday for February but I am so worried its not a good idea with the change in pressure and everything.

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Hi Sophie

 

You need proper medical advice. Go back and see your GP. I think most members on this site have been worried because the way the A&E consultant handled your case is not how they would have expected.

 

I once read an article about how doctors are only human - they have off days, get distracted, make mistakes. It advised that if you want to get the best possible treatment you should always ask them what the worst case scenario is for your symptoms. It can focus their mind and help them avoid missing something important.

 

You said yourself that at your appointment on 28/12/2016 the GP was undecided whether you should go back to A&E or not. If you ask for more reassurance from your GP it could prompt them to seek reassurance for themselves and get things moving along a little quicker. Your GP may have no expertise in neurology and may not want to question an A&E consultant but they won't want to be involved in a medical misjudgement either.

 

The worst case scenario of a possible SAH is that the bleed was from an aneurysm, which could rebleed with devastating effect.

 

I'm not saying that this is likely to have happened to you - there is other clinical evidence to account for your severe headache. I'm just pointing out the worst case scenario of an SAH.

 

I would go back to see your GP for reassurance.

 

Take care. X

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Sophie, you will need to declare it for travel insurance, but what can you declare? You have no firm answers and I suspect insurance will be denied at this point in time.

 

I would look at leaving booking a holiday until you have definite answers and when you have get insurance quotes before you book, they may well be sky high and unaffordable at this present moment in time.

 

For example, I had to pay almost £500 for the year, Europe only, last March and my SAH was almost 13 years ago now.

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Hi all,

 

My Gp phoned me today and told me that the consultant I saw in a&e should have done an internal referral, so it has now been passed back to his secretary. The waiting list is quite long apparently but that's dependent on how urgent he thinks I need assessing. So I'm back to square one with that. 

 

I feel like my life is on hold and not knowing what is happening is irritating me highly. Honestly I have tried to get answers but no one is telling me anything as they don't know anything.

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I'm afraid that you will have to be patient and wait for the neuro appointment. Another option is to contact the consultant's secretary to find out how quickly you will be seen, if you can get some idea of the timescale it may put your mind at rest a little.

 

In the meantime if you get any worse, even slightly, go back to A&E, even if you have to dial 999.

 

Please try not to stress, it won't do your blood pressure any good which in turn will not help

 

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Oh dear Sophie you don't seem to be having much resolution with this. It's a pity you didn't stay at A&E the other day and wait for the consultant. Someone would have had to give you an answer, by leaving you let them off the hook.

 

The consultants secretaries are usually very good and will try and help so maybe worthwhile giving that avenue a go.

 

Are you still getting headaches and what about the other symptoms. I do feel for you as it must be very frustrating.

 

Regarding your holiday plans you would be very unwise to go away without knowing if you have a problem. My nurse specialist at the Neuro unit that treated me was very good and arranged for me to have my follow up MRI before I travelled (3 and a half months after my bleed I flew to Menorca).

 

When it came back all clear with no follow up the hospital discharged me and said I was fine to travel. But you need to get this sorted before you make any plans.

 

I wish you luck and as Super says, any deterioration get straight back.

 

Clare xx

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Hey guys,

 

It is so annoying not knowing, as when I get a headache I slightly panic. I still get them on and off, sometimes feel lightheaded but they haven't got any worse or any better. If they get worse I will be calling 999. I will try to phone the secretary on my lunch break to see if she can even shed some light on what my notes say.

 

Thank you all for your support.

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Hi Sophie,

 

I am so sorry I haven't been back on and responded to your letter on Tuesday.  

 

Please keep up with getting an appointment. Do as others say but do contact PALS in your area for help to just ask for any assistance. Explain all to them and your concerns. They are there to help Patients http://www.nhs.uk/Service-Search/Patient-advice-and-liaison-services-(PALS)/LocationSearch/363.  

 

In response to insurance. Yes, my perimesencephalic bleed did affect my travel insurance. My consultant told me to offer up his letter, which he sends both to my GP and to myself, so the insurers had the correct information. I wasn't allowed to fly for a short period, then he said just short flights. I was wanting to get to Canada so I needed to wait 6 months and then he said not to the west coast. His concerns were more due to tiredness. 

 

Everyone is individual and each have our strengths and weaknesses and depending what is happening in each of our heads the doctors will assess separately. That is why you must get checked out. Hospitals do not like complaints and they would rather try to correct something earlier rather than later, so don't hesitate in finding out where you go from here. 

 

One reason Behind the Gray is so good is that everyone has different experiences and outcomes, but we all understand the worries that surface today, tomorrow and for the future.    The support on here is tremendous in knowing you are not alone when it comes to your own struggles, people here understand, so keep in touch.  Push to get that appointment. I hope for your own peace of mind it will be very soon. 

 

Keep us informed.

Irene

 

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