I'm new here, few questions about my bleed and PCS - Headway

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I'm new here, few questions about my bleed and PCS

BsRos1346 profile image
16 Replies

I feel a bit of a fraud being on here as I haven't had as serious problems as others, however, I just have a few questions for people who are more knowledgeable than myself.

Two months ago, I fell off my horse. I had a riding hat and back protector on, and i was jumping on grass. I don't remember the event or the majority of my time in A&E but apparently I was talking rubbish (repeating myself, lots of questions, and apologising unnecessarily). The person with me didn't think I was knocked unconscious but their priority was the horse, if i was unconscious it was not for long. I had an MRI scan and had a small bleed on my brain that had stopped by the time they did the scan. I only became aware of my surroundings (can only remember from this point) just before the scan. I wondered if this was when the bleed stopped and that is why i can remember? (It was almost as if I had woken up)

I spent two nights in hospital, told i couldn't ride for four weeks, but I pretty much returned to my busy life! I was tired but pretty normal apart from having mini meltdowns at stupid things (eg choosing stuff in shops). There are a few events that I can't remember, for example none of the exams that i sat 2 months before, and a few insignificant things (I am aware of them as they've come up in conversation and I've known nothing about them!) I wondered if I would ever get these memories back? It's been two months and still nothing!

I've also been having headaches since the event (currently I am having them daily). I have had migraines before the event and although I label these migraines, they feel different. I went to the doctor about them (and also because the school wanted it confirmed that i could play hockey matches again) who told me I had post-concussion syndrome and that I shouldn't be riding or playing hockey matches. (Ironically) I can't remember if she said I shouldn't be training for hockey. Should I be training?

The doctor also asked (amongst other qu's) if i had any blurred/ double vision. I said no but I'm wondering if i should have said yes. I get almost blurry spots but not my whole vision. Any ideas or am I just being a hypochondriac?

Also how long will the PCS last? The headaches can be really sore, yet there is nothing I can do (grrr!!). I'm worried it will affect my exam performance etc etc.

Although it sounds stupid, how serious is my situations? I feel like some people/ doctors/ friends make a big deal out of it, whilst others don't, so my natural reaction is to downplay the events and how I'm feeling. I had a friend who was hit by a hockey ball, had concussion, then post-concussion and was off school for a year, and dropped into the year below. I'm adamant that mine will not effect me that much at all (hence why I kind of want to keep playing hockey) , however I do feel a little that mine was much more serious!

Apologies that this is so long and rambly but I think I just wanted to discuss it with others and try to get small questions answered.

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BsRos1346 profile image
BsRos1346
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16 Replies
lcd8 profile image
lcd8

Hi there. I'm approaching this from a different angle because I have a birth defect which became apparent when I was 14 and it caused Hydrocephalus (fluid on the brain). But in my opinion the symptoms you report and any kind of head injury are never insignificant. So please try not to feel like a fraud here.

When I was 12 I began getting headaches which grew progressively worse. By 14 I would be in bed for days writhing with the pain of them. My GP had diagnosed migraine but none of the tablets I tried seemed to work. Fortunately my mum was very insistent that this wasn't normal and the doctor finally referred me for a CT scan. This uncovered my (now serious) condition.

I'm not saying this is anything like what you are going though. But please do go back to your doctor and insist on further investigation. Something must be causing your headaches and if its just one of those things it'll put your mind at rest. Good luck!

BsRos1346 profile image
BsRos1346 in reply tolcd8

Thank you for your reply. It's nice to know someone else's experience. I'm happy to accept that my headaches are post concussion syndrome but I just hope they go away soon! Thanks.

marky1956 profile image
marky1956

Good morning you said the mri scan showed bleeding. Which the doc said had stopped. What can happen is during the healing time for this rupture. When you get agitated about what you remember and it can be stressful and therefore cause anxiety. And when that happens your heart goes into overdrive and pumps blood at a high rate through your viens. This can prevent the rupture from healing. So my advice is stop all unnecessary things and take it easy slow down listen to music sleepy music not the stuff that bangs your brain. Look in the mirror and have a giggle at yourself and think how lucky you are to be alive. And remember this type of injury can take while to heal. So please take it easy. One step at a time. Xmarky

BsRos1346 profile image
BsRos1346 in reply tomarky1956

Thank you for your reply. How do you mean that anxiety can prevent the rupture from healing? As in my brain could bleed again? I do get quite anxious because I have a lot of school work and deadlines but I suppose I feel that it's been two months and my only other option would be to redo the year which I really don't want to do so it's persevere or nothing! I find it very difficult to think how lucky I am to be alive as I think there are so many others who have been in much worse situations! Thank you.

marky1956 profile image
marky1956

When your headaches go and you are free of pain you will be happy and you will know you are on the mend so don't worry and as I said try and relax. X cheers m

Hi, I had a very similar accident - I will not repeat it but click on my ID and you will find it in my Replies! You definitely sustained head injuries; the crash hat prevents fracture and absorbs a lot of the force but the brain still gets shaken up against the skull which has repercussions which do not show on scans. Sadly Neurology is not yet advanced enough to see, assess or even predict the sequelae of this type of injury...

However the good news is that your own (subconscious) brain that runs the show is very busy with repairs and re-ordering. the process takes at least a year and the most important thing is to cooperate with it - don't fight the healing process by trying carry on as normal. If you do that your brain will have to pull the plug on you as it were! First do not engage in activities that might shake your brain - so no riding. I did ride again after a year and fell off when my horse did and emergency stop - I landed heavily on my feet but had double vision for a couple of days. I, er, stopped riding after that warning but we still have horses as my husband and now young people ride and run a livery yard.

You should be seen regularly by a neurologist for several years until you both feel it is no longer useful/necessary. But please do not expect them to wave a magic wand! I made a very good recovery - never had headaches but had to give up work 20 years later when I was finally diagnosed with Acquired Alveolar Hypoventilation Syndrome. I am now in bed on oxygen as I do not breath enough automatically (especially at night). I have also been diagnosed with Neurological hearing loss (discrimination) which was one of the first things that affected my work in meetings, and have worsening memory problems following a spate of TIA type attacks in recent years.

So be a supporter of your body's healing process, be sensible but get on with life and perhaps consider happy pills to cushion you emotionally as it is likely to be a bumpy and 'uncertain' road.

Take care!

Oh and a common cause of headaches is dehydration. My brain demanded two main things of me - sleep and water so I have always had a bottle of water by me...

BsRos1346 profile image
BsRos1346 in reply to

Thank you for your reply and the information you've given me. I was told by the hospital to not ride for four weeks but after that fine however i have since been told by different doctor (when diagnosed PCS) no riding until she clears me.

I'm sorry to hear of how you are now. Was this all caused by the singular TBI?

Pretty certain the headaches aren't dehydration as I carry a water bottle all day and drink a lot of water. Thanks for the suggestion though.

Thank you.

suemoff profile image
suemoff

Your accident sounds almost identical to mine 2 1/2 years ago. I was in hospital for 5 days and thought all would be fine quite quickly. I had 2 months off work then tried to go back and ended up off for another 2 1/2 months. I then gradually increased my hours, but still only work 4 days a week. I really wish I'd had more information at the beginning, I don't know if that would have stopped me from trying to do too much, but you need to allow yourself time. You can't really compare yourself to other people and I know that the thought of having to retake a year of study would be frustrating. It's the fatigue that I find difficult, more so when it's mental rather than physical. I still ride though. :-)

Sue

BsRos1346 profile image
BsRos1346 in reply tosuemoff

Thank you for your reply. It certainly is frustrating, especially as no one can see anything evidently wrong with you. Yes fatigue and and headaches are my problem too. How long did you wait before you started to ride again? Thanks.

suemoff profile image
suemoff in reply toBsRos1346

I was back riding in 4 weeks. I didn't get any advice whether to or not or any advice about recovery and possible symptoms st the time, so I just got back on. It was later on when I was off work again and saw another doctor that they took it more seriously and referred me back to hospital.

It is tough looking fine, but feeling shattered, try to be kind to yourself, easier said than done and I still don't manage it very well.

Sue

BsRos1346 profile image
BsRos1346 in reply tosuemoff

I was originally told by the hospital no riding for two weeks, which they then changed to four weeks due to how bad the amnesia I had was I think. They said nothing else to me and I wasn't to come back for a 'check up'. Then when I went to the doctor two months later I was told that I definitely should not be riding. Oops!! Thanks for you replies.

angelite profile image
angelite

Hi there,

As far as I know, a concussion is classified by symptoms and the lack of structural change on a scan - you have evidence of a bleed on the brain which is not 'just' a concussion. So some of your symptoms could be down to this event, rather than just post concussion syndrome. Tell your GP if you continue to have visual problems and severe headaches. The advice to keep away from contact sports/horseriding is quite right at this early stage, as you need to minimise the risk of banging your head again so soon after your original accident - it can cause further complications. In general brain injury, you tend to make the most rapid recovery in the first 6 months, after which recovery can still continue but at a much slower, less noticeable rate. Post concussion syndrome often resolves within 3 months but can continue for months for an unfortunate few. Fatigue is a common side effect of any brain injury. I know you want to get on with life again and that shows great spirit but you may find that you need to accept your limitations for the time being. Try not to overpush yourself and do too much - it makes fatigue and possibly other symptoms worse. That doesn't just apply to physical activity - too much mental stimulation can affect you too ! So be'ave ! : ))

You might like to read through the info on the Headway website or even give their helpline a ring to talk things through ? headway.org.uk/?gclid=CICc1...

Do keep in touch and let us know how you go on,

Kind regards, Angela x

BsRos1346 profile image
BsRos1346 in reply toangelite

Thank you for your reply. That information is really helpful and puts me at ease a little more. If the headaches do continue (obviously for a lot longer than the current amount of time I've had them) is there anything my GP can do? Thanks.

angelite profile image
angelite in reply toBsRos1346

GP can suggest painkillers and prescribe more powerful ones than your standard over the counter type, if these are not working for you, or refer you on to a specialist if they feel it's necessary : ) x

BsRos1346 profile image
BsRos1346 in reply toangelite

Okay, thank you.

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