some may remember me writing that I fell out of my stair lift from the top of a high stairs at my home. I fractured my right temporal bone, had a brain bleed, amnesia for 20 days, concussion and damaged my bowel. I came out of hospital with the promise of daily physio work which I’m still waiting for!! I can walk now but am giddy all the time. Fast forward to 2024 in July I slipped on the skin of my grandsons boogie board and fell flat on my nose. I literally fell on my nose on a wooden floor. My glasses were embedded in the bridge of my nose. Went to see GP who sent me for x Ray . Nothing was wrong. I had bruising under both eyes and my dizziness got worse. Since that fall I have had horrendous headaches that wake me up. Rheumatologist told me to see GP. Eventually in December they sent me for a CT scan on my head. I haven’t heard anything from GP so rang today and receptionist told me it was up to me to contact them not the other way around! She looked at my results and told me it says I have to get advice from the GP, he was fully booked today so he will ring me some time tomorrow. I am besides myself with worry. I don’t know what they can detect on a Ct scan. My mother had brain tumours- they worries me. Is my brain still bleeding? Have I fractured my skull again? I just want to voice my fears. Sorry in advance.
worried about CT scan after fall: some may remember... - LUPUS UK
worried about CT scan after fall
Oh my goodness I am so very sorry lovely. What a dreadful tine you are having. You should not be apologising, they should apologise to you for the stress, anxiety they have caused by their lack of communication and care.
You are justifiably worried , who wouldn’t be? It really is not good enough.
Have I remembered correctly that you are in Wales? Please forgive me if not as I am in a massive foggy brain phase. If so please contact Llais …01633 838516 and let them support you. I am in the process of doing just that too. If you are in England contact PALS. You need support now to get some answers.
I truly hope that things will turn out well and you can get some reassurance. Please keep us updated. Huge Cwtches xxx
Diolch. I will let you know. X
So sorry to hear this. I had a car accident ten years ago and had horrendous headaches afterwards. My experience was only a small fraction of what you have been through.
I did lots of reading as I was so scared. One day on the bus I ended up going to A&E instead of going to work as my head was spinning so much. Stress made things worse. They told me to rest more, drink enough fluid and reduce time looking at screens.
In the end the advice was that my GP refer to Neurology. Hopefully, from what you say, your GP will now need to pick up on this.
Sometimes with referrals I have helped my GP to list things to include in the referral. ..hope PALS help if GP is slow to do anything. Headaches, where I injured myself, also became part of my flare pattern and were helped when flares were treated. In fact they became the worst symptom. Maybe the injury was focussed on my immune system. Who knows?
Here is a Dr Donald Thomas, Lupus Encyclopedia blog on CNS Lupus which mentions different sorts of headache: lupusencyclopedia.com/cns-l...
Hope you get the help you need very quickly
so sorry to hear this. It is worrying these days that when anyone get ill is like the lottery to get an appointment from GPs or consultants.
Hope it get sorted soon
I would think that if it was serious you would be getting your results from a Neurologist not the GP. I had a brain Haemorrhage about 12 years ago and I was so dizzy for a couple of years after. I still get dizzy on and off and the occasional room spin. Have your walking stick with you all the time as this can steady you if you have a dizzy episode. It might just be enough until you can sit on something and wait for it to pass. I can't stress this enough but I watch my footsteps closely and am very careful when coming down the stairs. There is something called 'Proprioception' and since my haemorrhage I have lost my proprioception. This means I can't always judge distance or notice undulations or hazards in my way when I walk, hence watching closely where I put my feet and the path ahead. Occupational Therapy is very good in terms of helping with the problem and offering advice. I have had several sessions organised by my Rheumatologist which have been very helpful. When you have a brain injury there really seems to be little ongoing help. Maybe your GP can give advice on help to cope with the day to day living post brain injury.
I know its a worry and every five years I pay for a brain MRI to put my mind at rest regarding any further brain aneurysms. I have been clear so far and I have got used to the dizzy feeling which comes and goes. It gets worse when I get tired. If you feel an episode coming on just get to a chair or to the floor before falling if you can. I totally understand about the worry of things happening again and at least you have had another scan to check on things. I hope things come back clear for you.
Thank you. I don’t get episodes I’m like this all the time except when seated. I can drive perfectly well, can sit watching TV or talking to people, it’s just when I’m standing. It’s 2.38 pm and still no call from the GP. I know they are busy but overnight I have gone from wondering if I have brain tumours like my mum, to another bleed, another fracture, dementia, fractured sinuses. My brain went to the dark side. I have been feeling sick all morning. Common sense tells me that if it were serious it would have been red flagged and they would have phoned me. But my surgery is so bad and underperforming that I don’t trust them to do the right thing. If they don’t phone by 4 I’m going to phone them. Then I will be seen as the villain! Please excuse my ranting. I was just feeling I was getting a little bit back to normal apart from the headaches and dizziness then this happens.
You are having an awful time. We would be worried if you weren't worried. Health services forget to include worry into their manual of patient humiliation. You go ahead and be worried. It is normal. You want to look after yourself. You need to feel safe. I mean who doesn't stare at someone who has bust their nose and given themselves two black eyes. It's embarrassing. And on top of that your mother had a brain tumor. I would be downright terrified never mind a bit upset. Get yourself a cuppa of what ever evil brew you like the best, get a big helping of something sinful to eat. And worry like hell. And stop saying sorry. There is absolutely nothing to feel sorry for. (well maybe that bit of weight gain from sinful eating. No! Not even that!) At times like this we all need emergency chocolate.
It's ok to worry but as they say worrying won't change anything except make you feel more sick. Try and get that heart rate down and ring the doctor before they close.
I rang the doctor and the receptionist said that he was in a meeting and would phone me back. Just got off the phone. CT was okay - they could see the old fracture in the right frontal area from 2023 but nothing new. No tumours or anything else. I asked what we could do about headaches. He said I was on quite a high dose of gabapentin so perhaps he should reduce them if they are not working for me!!!!! I told him I have been taking 2x Panadol advance every night and they did nothing. He said to keep taking them and relax! Then he suggested taking amitriptyline but they make me so drowsy so I told him I’ll give those a wide berth! So basically I am in the clear with the CT and I just have to get on with the pain day and night. I am so relieved about the CT results. 😁👏🏻👏🏻
I find codeine good for pain and don't make me dizzy, I have gabapentin at night too but only one. They make me dizzy but help me sleep through the pain. When I first had my brain haemorrhage they put me on stematil and that was quite good for dizziness. I can't take amitriptyline either, they give me vivid dreams and make me feel awful. I wonder if it is to do with brain injuries why amitriptyline doesn't work for us? So glad you had good news. Try and be careful and let yourself heal. Get others to help you out when needed as it looks like you need a little more TLC. xx
so sorry you are going through all of this. Waiting is the worst. Hopefully you hear soon.
Lupus - kaleidoscope Disease 
Getting a consultant referral for a CT-PET scan for relapsing polychondritis?
Have just had a 2nd brain scan showing micro bleeds could this be linked to lupus and what happens next. 
Feeling fed up
