Severe headache, don't know what happens next

[sophie2010]

Hi, I am new to this so I apologise if I am not writing in the correct forum. I am a 22 year old non smoking female.

 

I have recently been to A&E for a severe headache, where I could not walk or bear any light - diagnosis was sinusitis on my left side. However, a consultant noticed something on the CT scan and believe it to be a SAH.  I have been referred to a neurologist and am waiting for an appointment to become available.

 

I have been left in the dark, so to speak, with regards to what is happening and what will happen when I see the neurologist. It's on my right temporal area and I still get pressure headaches and  sensitivity to light on the odd occasion, I have also become a bit ditsy and forgetful and zone out a lot.

 

If anyone could tell me what to expect, or what could happen I would appreciate it. Would I be put on tablets? Is this very serious? Do I need an op? Can I travel abroad? Can I have a baby? Is this bleeding on the brain or an aneurysm?

 

Thank you  

[Daffodil]

Hi Sophie

 

Welcome to BTg even though I'm sure it's the last place you wanted to be visiting. You are going to be feeling a lot of worry and uncertainty at the moment as nothing is going to be clear until you see a neurologist I expect but in the meantime you can help your body by trying to relax and take frequent breaks from stimulating environments, drink plenty of water and rest plenty. 

 

If they have scanned you and discharged you it is unlikley you will need to have interventions but they will want to do a more detailed scan to help diagnose you. We can't give you medical advice so the neurologist is the person to advise there but we can help you with questions to ask. But quickly, if later they decide you have had a bleed in the brain then yes you can travel, other members have had babies post bleeds and you like us just learn to adapt to the changes within your brain which may show up post bleed. 

 

Take baby steps for now , listen to your body and push for that appointment.

 

Daff 

[Macca]

Hi Sophie,

 

Welcome to BTG.  I think you are jumping ahead a bit here. 

 

First of all, you need a definite diagnosis of what is wrong before you can answer all of the questions you pose.  I would guess sinusitis is a heck of a lot different to a SAH but your doctors need to tell you this, not us.  We are not medical people so we can't help with your diagnosis or help with medical questions.  That's what doctors get paid for. 

 

Pressure headaches and sensitivity to light, short-term memory issues and the like are common to SAH sufferers.

 

All the questions you pose in your last paragraph are ones for your doctors to answer as in every individual case.

 

I can say what happened to me which is that I fell into a coma, was operated on and was coiled.  I had a bleed on the left anterior communicating artery, not in the brain itself. I was on various tablets for a while but am not on any now.  I can and do travel abroad, although I declare what happened to me on my travel insurance.  It adds to the cost a little bit, but not much unless going outside Europe.

 

Sadly, I don't know about having babies but maybe one of the ladies might answer that.  However, I would say get your diagnosis and see what can be done about it before you go worrying too much on that score.

 

Hope this helps.

[sophie2010]

Thank you for your reply,

 

i'm glad to hear your op was successful and you are well.

 

I have been given little information and slightly worried. I had a cold and was coughing up small amounts of blood and had nasal mucus with blood.  

 

I went to A&E with severe headache where I couldn't move. Every time I tried the pain was so intense I would fall to the floor. I couldn't bare any light, and no painkillers would numb the pain. The headache lasted for hours, from 7pm until 4pm the next day.

 

I went to hospital at around 9am, they gave me morphine, blood tests and oxygen. My crp level was 41 (not sure what that means) I had a CT scan, a consultant gave me a high does of antibiotics and told me I need to see my GP and be referred to a neurologist. The hospital sent a letter to my GP to make a referral. The GP read the letter yesterday and made the referral under the assumption its a sah like the hospital told them.

 

I am confused as to what is happening and what is likely to happen. I assumed a sah would be urgent and I would need medical attention there and then.

 

I have also read about unruptured aneurysms? However with the headaches I keep getting (I never suffer from headaches at all) I am overly paranoid as to what is happening. What could this be?

I understand you are not medically trained, but is this normal for someone with sah to go through the referral process?

 

I don't understand what the referral is for as they said sah but from what I have read sah is a bleed that has immediate effects and needs urgent attention.

[Skippy]

Hi Sophie

 

Welcome to BTG.  As others have said, we cannot offer medical advice on your symptoms or situation.  Unfortunately you will have to trust that this does not need "urgent attention" and may be that although there could have been a bleed it may not be one that needs further treatment.  If you look on this site under NASAH you will find people who have had bleeds that have not been caused by aneurysms but tears in various arteries - this may be something that your specialists are trying to ascertain.

 

SAH and NASAH present differently in different people - my SAH was a blinding headache that caused loss of consciousness and the use of my right side.  I was put into a coma and operated on 12 hours later having two aneurysms coiled.

 

All I can suggest is that you contact your GP to see how far along they are with your referral and when you can expect an appointment.  As mentioned, please try not to over do things for the time being and rest and drink plenty of water.

[sophie2010]

Hi Skippy,

 

Thank you for your reply, I will take a look at the NASAH site. it is all so confusing. as I suspected an SAH results in an operation and presents as a severe headache as a result of a bleed?

 

After reading most peoples stories I feel that it may not be a SAH that I have, as I have been out of hospital for almost 2 weeks with no episodes and most people suffered a spontaneous episode resulting in surgery, however I question, could they have just caught it by chance on the CT scan? and it hasn't ruptured, or am I over thinking?

 

I'm sorry to be a pain, I am just very worried, I am 22 with a 6 year old daughter and thinking the worst, but you have put me at ease

[ClareM]

Hi Sophie

 

This must be such a worrying time for you especially as you do not seem to be getting any answers from the medics re your condition.

 

I suffered from a NASAH. It started with an explosive headache, photophobia and vomiting. I was diagnosed using a CT but I also had a hydrocephalus which resulted in surgery and a 2 week stay in a neuro unit. As Skippy has said I am sure that if there was any worry that you needed urgent attention you would have been referred to a Neuro unit straight away. 

 

Have you actually spoken to your GP? GP's are often fairly uneducated about SAH, mine had never had a patient with one. Would it be possible to have a telephone consultation with your GP to discuss your predicament? Perhaps he/she could be persuaded to contact the Neurologist himself by phone to discuss your case and then possibly put your mind at rest or at least give you some idea when you will be seen. 

 

I hope you manage to get some answers soon. In the meantime I hope you can continue to find some help here on BTG.

 

Clare xx

[sophie2010]

Hi Clare,

 

Thanks for your reply, I am finding this site very helpful. your symptoms sound exactly like mine, the consultant was concerned about my ct scan but did not tell me why. I read my discharge letter where it stated  - referral needed to see neurologist for SAH and then I googled what SAH was. My gp originally booked me in to see him on the 11th Jan.

 

I phoned yesterday to get an appointment sooner, I went in yesterday and they didn't even read the letter from the hospital properly. As I was getting headaches he was undecided if I should go hospital straight after the appointment, but as I am not in chronic pain I couldn't see A&E doing a lot. The doctor read the letter and made a referral there and then and told me I would get a letter with an appointment from the hospital.

 

Could I ask you, did you get referred to a neurologist? what did they say caused it? if you didn't suffer from a hydrocephalus would you of needed surgery?

 

Its so frustrating not knowing anything about the condition my brain is in.

[ClareM]

Hi Sophie

 

I had my bleed whilst out running. I was blue lighted to my local hospital who diagnosed the SAH and sent me to the nearest Neuro unit (In another town). I was conscious when I had the SAH and for the first hour or so in my local hospital. I then do not remember anything for around 10 days. I have certain 'flash backs' and apparently was talking but have very little memory of the Neuro unit.

 

I only needed surgery as the hydrocephalus had caused a lot of pressure on my brain and needed to be drained. I never saw a Neurologist, only a Neuro-Surgeon and then only when an in-patient. Since then I have had contact with a Nurse Specialist at the Neuro unit.

 

Perhaps go back to your doctor again (maybe by phone), explain your worries and ask if he can find out where you will be seen and when. I am really sorry I can't be more helpful to you, it must be very hard not knowing what is going on.

 

Keep us posted and take care. I hope you have family to help  you and your daughter.

 

Clare xx

[Skippy]

Sophie, in the meantime, if you are in so much pain that you cannot function and are genuinely worried/scared do not hesitate to dial 999!!!  Pretty much the exact same words my GP told me when I was discharged and still in pain.  Luckily I never had to but don't be afraid to use the emergency services.

[Susan]

Hi Sophie

 

SAH can be diagnosed by CT scan, or by lumbar puncture if the CT scan is negative/ inconclusive or MRI/MRA. Once SAH has been confirmed the usual process is to determine whether the bleeding is from an aneurysm or not - this could be initially by a scan with contrast dye and/or cerebral angiogram, but is usually done quite quickly after diagnosis.

 

In your case you don't seem to have a definite diagnosis yet and I can understand this is worrying.

 

I agree with Clare and would say go back and see your GP or ask for a telephone consultation. Ask the question you have asked here: 'If the referral is for SAH why has it not been given more urgent attention?'

 

I would also be asking if the CT scan has been reviewed by a neurologist or neurosurgeon yet.

 

GPs often don't know much about SAH but hopefully you have one who will try to get answers for you. Don't be worried about seeming over cautious - it's better to get some peace of mind.

 

I hope you get some answers soon.

 

Take care. Xx

 

[kempse]

Hi Sophie,

I'm sorry that you find yourself in this rather stressful situation which is understandably causing you worry and confusion.  I must say I'm a little baffled as to why the consultant didn't send you to a neuro unit straight away if he suspected a sah rather than tell you to get a referral from your gp which obviously takes longer, that seems irresponsible to me.  I'd be inclined to ring your gp if you haven't already done so and express your concerns and ask, if the possiblity of a sah was mentioned, why you were not sent to a neuro dept at the outset.

 

Whilst we like to trust the medically qualified, it is sometimes worth querying their decisions etc.

When I had my sah, I rang 999 as it was happening (although I had no idea what it was at the time) and when the paramedic, after doing his checks, said he could send me to hospital, but that I probably had better things to do on a Saturday afternoon and then left me at home, I assumed I must be ok.

 

It was nearly a week later, with the headache as bad as day one, that my dad rang my gp and luckily I was referred to a neuro clinic that afternoon.  After 5 hours of waiting, a CT scan revealed a sah, I was put on a ward, had an operation on day 4 and home 7 days after that.  If it had not been for my dad ringing the gp, goodness knows what might have happened.

 

Hopefully it won't be a sah, but for peace of mind I would certainly get back on to your gp.

 

Best wishes,

Sarah

 

 

 

 

 

 

 

[jess]

Sophie you need to speak to the drs a.s.a.p because if any one of them suspects sah then you should not be at home waiting, unless it's a past bleed my ns told me (at time of rupture) your other one had bled before so they know xxx

 

I can tell you sinusitis is agonising sometimes my grandad suffered terribly and so do I xxx

[Winb143]

Sophie,

 

Ask them to not play about and ask if they can bring it forward as stress is bad for us xx

 

Better to be safe than sorry

 

Good luck xx

[sophie2010]

Hi everyone,

 

Thank you so much for the support. I have had a CT Scan and they are almost certain its SAH (from what I gather from the letter to the GP)

 

The letter from hospital stated this word for word, if anyone could shed some light as to what this means?

 

Subtle areas of linear high density are demonstrated in the right temporal parietal region and could represent a small volume of SAH. Extensive inflammatory changes are demonstrated involving the left ethmodial sinus left sphrnoid sinus and the maxillary antrum. GP to arrange urgent neurology appointment for SAH

 

I do not understand that if they suspect SAH why are they not treating this as urgent, even if it isn't SAH something is happening and its bad enough to need a referral. I have spoken to my gp and pushed for a faster referral, he wasn't going to make the referral until 11th Jan!!! but I phoned and went in and as soon as he read the letter he made on straight away. (28/12/16) I have asked him questions but he has refused to answer as "its not his area and he is not a neurologist and hasn't seen the CT scan"

 

Thank you for your help

[Skippy]

Sophie

 

Well done on pushing for an urgent referral.  Unfortunately I cannot help with the jargon in the letter.  The GP is probably being cautious as most of them do not get to talk to an SAH patient and they have little knowledge.  He probably doesn't want to give you any false information.  My GP told me my aneurysm was 2cm - that's a giant - as he'd seen my MRI - it turned out that the aneurysm was 2mm and the blood clot around it was 2cm!!  

 

My bleed was diagnosed through MRI/MRA not a CT scan so hopefully at your appointment they'll give you more scans and therefore more information.

 

Hopefully that appointment will come through quickly. 

[sophie2010]

Thank you,

 

Hopefully I get an appointment quickly and get a definite answer as to what is happening.

 

Most likely wont be seen for a few weeks. :/ none the less I am keeping positive and being healthy.

 

I am concerned that I still get light headed and headaches every hour and my neck is starting to feel a bit tense, but I know if I go A&E I will be there for hours and most likely sent home as it is just a headache as the pain isn't severe.

 

But I appreciate all the advice and support you have all given me.

[Super Mario]

Sophie, in your shoes I would go to A&E taking with you the discharge letter saying you need to be seen urgently to show them especially as you are still having problems.

I suspect you probably won't have to wait long. If you do have to wait then so be it, it is your health at stake.

[ClareM]

Hi Sophie 

 

i agree with Super that you need to go to A&E now.

I work in an extremely busy hospital and there are people who visit for water infections. You have a letter stating possible SAH and as you are now suffering from neck stiffnes you need to be seen now and would not be wasting anyone's time. 

 

Please go and jet us know how you get on. 

 

Clare xx

[sophie2010]

Hi,

 

It's like a stiff ache in my neck and shoulders, if that makes sense and the headaches are on and off. Obviously my health is important but I am at work and I cant have time off to go A&E to be sent home again and told its nothing. I don't want to be sitting in A&E and worrying everyone to be sent home and look silly.

[Super Mario]

Sophie, if you take the discharge letter saying suspected SAH I am sure you will be taken seriously and you won't look silly. There are people who go with cut fingers, this is far more serious than that.

To your health, work is secondary.

Do you realise a SAH is a life threatening condition. Brutal me saying that, I know, but please go.  

[sophie2010]

Hi,

 

In all honesty, I am quite scared as to what will happen and if they will treat this as serious. I realise that it is serious, but I am so confused as to if I actually have sah as they done a ct scan.

 

Surely if they saw it they would of done something straight away?? My question is what did they see? Why am I still getting aches? Is it because I am worried that I'm bringing the aches on myself?

 

I finish work at 4.30 and debating on going after, unless it gets worse.. maybe I am generally just unwell and caught a bug?

[Macca]

Sophie,

 

Don't debate it - just go and get it dealt with.  You'll just be worried until you do and surely it is better to know for sure than to keep wondering.  It is their job to find out what is wrong, so don't be shy just go.

 

Your health is the most important thing here.

 

Please, just go - why wait until after work?  Work will still be there when you get back and your health is vital.

 

If you don't you may be off for longer than if you do go - so go and get it sorted!

 

Macca

[Skippy]

Have to say that I agree with the guys above - if you're that worried get yourself there now!!!  You just tell work what's happened, how you're feeling and go.....personally I can't understand why you're at work!! Your GP should have had the good sense to sign you off work if they have notification stating suspected SAH. 

 

Go!   Now!!!

[sophie2010]

Hey guys,

 

I went to work 2 days after I came out of hospital, had headaches on and off ever since, I am extremely tired I could easily fall asleep, and I usually struggle to sleep in the day, and my neck has started to ache and feel sore. did anyone else experience this?

 

I'm so confused as to why they are taking their time if they are suspecting sah then I should have been seen by now? As sah is a massive assumption to make and Is serious. Hopefully its a nasah or just a mistake?