I am adament I have had a bleed on my brain but ac... - Headway

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I am adament I have had a bleed on my brain but according to doctors I am having 'migraines'

LewyCfc96 profile image
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Around 6 weeks ago I was lying in bed with my girlfriend at a hotel we were staying in when all of a sudden this shooting headache suddenly came on.. I had half a bottle of champagne half an hour before hand so just assumed it was from that but this pain was like no other it was also making me violently spew and feel absolutely terrible. If I hadn't have been with my girlfriend and at a hotel that she had paid for I 100% would have phoned an ambulance for the pain but really didn't want to embarrass myself for what could have been just a 'headache' i continued to lie in bed in agony while my girlfriend fell asleep. The next morning I still didn't feel 100% the pain in my head was a lot more mild however and I just felt really fatigued.. I had a holiday booked the following morning so was conscious if I went to the hospital they may keep me in so thought I'd fight what ever was going on. Three days into the holiday I got this horrible shooting pain in my head again and was again being violently sick and felt like i was genuinely dying this was when I thought enough was enough and took myself to a hospital in Palma and told them several times 'there's something not right going on in my head' 'it feels like fluid is moving around my head and its all numb' for the Spanish doctors to put me on a drip and keep me in for two nights giving me pain killers but not doing any checks on my head what so ever!!! When I got home from Palma I took myself straight to the doctors as I felt awful so tired no energy what so ever and feeling like someone was pouring water on my brain and a numbness at my forehead and middle part of head.. The doctor originally said this could just be a 'migraines' and said it will go away in 5 days this never happened so I went back to the doctors as I was so pale had no energy even going to the loo was a struggle, I was wakening up during the night screaming like and when wakening up it was like i could see someone in my room (all that is still happening now) and had this numbness in my head which wasn't going away in the slightest. They then thought it would be best to send me for a CT scan.. My results on the CT scan came back fine so the neurologists just hit me with 'this looks like migraines as you are Young and fit we don't think this is anything serious and it should just go away in time id recommend you going back to your day to day activities' 1 month on from that and no change what so ever I have a constant headache on forehead and still get the feeling like someone is pouring water over my head, I am struggling to fall asleep even when body is exhausted and even when I do fall asleep I will wake up within an hour 9/10 almost like I'm hallucinating and seeing things, I feel like my patience is next to none now when that wasn't the case atall, concentrating on things is a real struggle, I can be walking and I suddenly just feel like im going to pass out and I go all dizzy and have to hold on to something. Loud noises really get to me when they never used to for example a car horn or anything like that genuinely hurts my head. My skin is still as pale as ever when I usuaklly have a glow to my skin. I feel like my moods can change instantly aswell which before was never a problem with me however now I always feel down. I know for sure this isn't just 'migraines' I've had migraines in the past and this is completely different but I don't know what I can do. The doctors are telling me to just get on with it the neurologist said he thinks it's a 'thunderclap headache and he said at the absolute worst case scenario I've had a small bleed on the brain and been lucky as ive recovered from it but I feel I need to know if I've had one because I could end up doing something that you aren't meant to do after one and I wouldn't know. I think because I'm only 20 they assume it's nothing but I'm worried incase I try go back to how I used to be for example go back on a treadmill which would boost my heart rate and blood pressure and I get this sudden head pain again like I have twice before and this is the most serious one.. I have read people's forums who have had brain haemorrages and it seems like I am going through a lot of the things they are . Any help or guidance here would be greatly appreciated I really don't know what I should do :(

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LewyCfc96
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11 Replies

Can't you go to a&E and let the check you out

LewyCfc96 profile image
LewyCfc96 in reply to

I have been several times and they given me a CT scan but this was three weeks after the initial shooting pain in my head.. The CT scan came back alright so they have just said its headaches and will go away but it isn't getting any better atall and I am starting to get extremely worried incase they have missed something from all the symptoms I am getting :(

in reply to LewyCfc96

I don't know what to add to cats advice apart from keeping on at your gp for referrals to neurology

cat3 profile image
cat3

Lewy, I really don't know what to suggest after reading how you've had tests and been told you're ok. You could try calling the Headway helpline, on 0808 800 2244 during office hours, to see it they can help.

Alternatively, you might consider a private consultation with a neurologist who, for a fee, might consider sending you for an MRI scan.

Finally, you could keep on pushing for further tests, such as an MRI and hope someone will eventually listen and take the investigations further.

Good luck. Cat x

MXman profile image
MXman

Hi LewyC,

Completely agree with the above (Cat) MRI scan is the only way forward. I would also Suggest doing a timeline of your symptoms and what you felt and what was done a little bit like a journal. Very important for you and your doctor and for any future diagnosis.

Have a great Friday. Nick

mowgli123 profile image
mowgli123

I was really saddened to read your post & that you are suffering without any help or support from our 'supposed' professionals. It makes you doubt our GP's even more.

I think you should go for a second opinion for sure.

I recently saw 2 different GP's who gave me completely conflicting info (albeit a very minor condition)

Can you go private? It would be worth it, to be taken seriously & understand your condition..

Really hope things improve for you x

Dottiejay profile image
Dottiejay

In some ways your experience is very like mine, although there is quite a difference in our ages. 18 months ago I had a sudden blinding headache while at a keep fit class. My daughter took me to A&E, they kept me over 2 nights, I had a ct scan and mri but they found nothing. They sent me home with migraine meds although the doctor did call it a thunderclap headache, but I have been having migraines for over 40 years and knew this was different. Fast forward to December and after another blinder and violent sickness my daughter made me stay with her over Christmas, and Boxing Day morning found me in the middle of a seizure, not breathing. An undiscovered aneurism had broken and I ended up in Kings College having brain surgery.

Honestly, local hospital ct scans are nothing like the one I had in London before my surgery, even the paramedics that transported me were amazed, apparently they waited with my children to have a look. Kings weren't surprised that I'd had an all clear . They did think I had had a 'minor' bleed the year before. Don't let this go, if you can, get a private referral to have further investigations done. In the end only you know how you feel, and as I'm sure some bright spark has said, it's in your head! Good luck

asbas profile image
asbas

Hi

It sounds awful and worse that no one seems able to help. I'm just wondering if it's an endocrine issue. That may explain high blood pressure and increased heart rate. I had a head injury and that was two and a half years ago I still get headaches and I can't go back to my workout which was being in the treadmill without bringing about a headache - I saw a naturopath who said I had adrenal fatigue and that was causing all kinds of things like imbalance of minerals in my blood stream. Since starting treatment with her I've improved heaps. Still think you should get the MRI done just to make sure. Hope this help

RecoveringH profile image
RecoveringH

1. Well done for finding this site!

2. Trust your instinct.

3. Change your diet today - beetroot for blood pressure daily will calm things, pineapple for anti-inflammatory, garlic - although blood thinning properties - has anti-bacterial anti-viral properties and will kill any blood clots or temporary lumps which have gotten stuck - it will attempt to clear these minor recent blockages (with addition of regular 15 mins exercise - 3 times per day at regular intervals). Use ginger, black pepper, cinnamon, cardamom to heat and cleanse insides. (These will help the pale skin). Eat fish most days if you can afford it for 2 weeks to see if your symptoms improve.

4. Keep researching online and start a diary to record your symptoms. Your writing appears logical and coherent so hopefully your youth will work in your favour in healing what is going on for you right now.

5. Because of your youth, your energy output is usually high. You must tone this down (don't over excite your heart rate for extended periods) until you notice your symptoms start to reduce. Don't treadmill. Walk - fast if you like - but don't run. Don't do champagne - water and juice, Guinness has iron in it - have a half if you must do alcohol followed by a juice. Suspected brain injury? best not to dabble.

6. For your sanity, get another doctors opinion!

This is my advice, like it or leave it! Best of luck, hope you feel better soon, keep us posted with your progress.

x

malalatete profile image
malalatete

If you are having 'migraines' this frequently then your GP should not be treating with painkillers. You should either be on some kind of triptans or prophylactic meds such as propranolol (low dose betablockers). You can argue the toss for a neuro referral just for headache when it is this invasive and I would suggest you do to rule out other issues with MRI and set your mind at rest.

In the meantime you need sumatriptan to take as soon as a headache starts to come on and you can get it OTC as well as on prescription. Go do that as quickly as you can to get the heads under control and your life back.

If it is any help or reassurance your symptoms could absolutely all be down to migraine - I have had these for 35 years now and mine have caused symtoms as varied as sudden headache, vomiting, vertigo, loss of speech, hallucinations, one sided temporary paralysis, total body weakness...sometimes for a week or more. People assume migraine is just an unusually severe headache but it is so much more - actually it is a neurological malfunction and can really knock some of your brain circuitry sideways. You may find the Migraine Trust a useful source of info and contacts.

LewyCfc96 profile image
LewyCfc96

Hi guys, so since the last time I spoke on here I have had an MRI and also a Ct scan and a lumbar puncture which have all came back fine which I really don't understand as it really isn't getting any better. I have a neurologist now and he has said that the tests have shown no inidication of anything of anything to be worried about however he can't say for sure that nothing had happened initially as I didn't get a test done till weeks later but has reassured me that even if something hadve happened that I have done no permanent damage to my brain as my scans have came back clear. He said that because my brain looks like it's been injured it is recovering and in doing that sending Lots of different signals like the pins and needles I get every day in my head and the headaches etc and said that he thinks in 9 -12 months time I should feel a bit difference and feel at least some what to what I used to feel. I'm praying that is the case :(. I am on amitriptyline for my headaches I take 50Mg every night before bed and it is helping as there is some days I wake up headache free (but I mild headache usually comes on just after the lunch period) yesterday I took a really dizzy spell and My head felt like it couldn't get any air at my forehead the two sides and also the back of my head the best way to describe it was it felt like it couldn't breathe like the air pockets were congested and my words were all muddled and my face was numb I mentioned that to my neurologist but he didn't have an answer for it. Every single night I wake up screaming for my mum it's like I am halucunating I can see things that no one else sees it's like my mind is playing serious tricks on me 24/7 when I wake up aswell I can't get my words out my girlfriend stayed 2 nights ago And I woke up asking who she was and saying that she wasn't who she said she was it's just crazy. I have noticed anything high in sugar just brings the headache on same with any sort of caffeine so I jus stay away from caffeine now!The past 3 months have been hell and has unfortunately triggered bad depression as I amnt feeling any better and I don't feel like anything is improving I am just resting at all times hoping one day I wake up and feel me again. I just want to know what has happened and how or when I am going to get better :(

This has been the worst 5 months I have ever experienced in my life 😔

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