New here and looking for some support from people with similar experiences and who are going through recovery too!
In August 2025 I was taken to hospital after having a clonic tonic seizure whilst in bed with my bed with my partner (not sleeping if you get me). I spent 24 hours in A&E where I was in so much pain with a headache, extreme photophobia and a lot of vomiting. I was taken for a CT scan and then told I had suffered from a subarachnoid haemorrhage and needed surgery. I had my ruptured aneurysm coiled and spent almost 4 weeks in hospital, where I also had a stint in intensive care following a series of vasospam’s with dysphasia.
I had my follow up appointment at the start of October and my consultant and nurse are happy with how my recovery is going. I’m still not back to work, this is due to still experiencing headaches everyday and struggling with fatigue. But largely I feel like my recovery is hindered by my anxiety. I have suffered with anxiety and depression for as long as I can remember, I do feel like since this has happened it has unlocked a new form of anxiety in the sense of my health. I feel like I constantly overthink when I have a headache or feel like something is slightly off in my body. I’m in constant fight or flight in terms of my emotions,
I’m only 27 year old and I’m incredibly grateful to still be here. With this happening to me at this age I’m convinced it’s only a matter of time before it happens again! The doctors didn’t really give me a reason as to why this happened or any sort of life style changes I can implement to prevent it happening again.
Whilst I can contact my nurse at anytime with questions and for reassurance and I have a great support system, I sometimes feel frustrated having to explain how I feel to people and them not fully understanding. I guess I’m just looking to chat to some people who have the same frustrations or any advice!
Earthing for your circulation ; that’s a huge support for your brain / body.
Return to nature ; it will heal you
You could start by watching the movie
Welcome, @elle2 to the group. I’m sorry that this happened to you. I know that you have probably been exposed to a whole host of frightening words since August. No one expects for it to happen to them. When I was 19 I had my first stroke. I had zero history of strokes in my family. One of the scary words I learned from that experience was “leukodystrophy”. Apparently, it is not common even to the web browser I use regularly. Modern science defines this as a genetic mutation. When I was 19, it didn’t do that yet. And the so-called experts at the university hospital I was staying at didn’t expect me to make it. What I should have learned from the experience was that doctors know exactly nothing about the human body. They can speak to what they’ve seen. No more. I was in my sophomore year of college at the time. I was going to be a computer programmer. And I was good at it. Until this month in 1998. “Sorry, kid. Guess your life’s over. We’ll give you til 2004, and then that’s all.” And they sent me home. I’d had three strokes during that first week in December. #1 and #2 I remember. #3 happened some time while I was stuck in that hospital in Joplin. They told me about it afterward. No rehab for me after I got home. We lived in a small town with no medical support. I’m told that our town was named after a suburb of London. I’m sure that you all know which suburb. I’m sorry. When I started writing this response, I didn’t want it to be all about me. Now that it is, I’m going to shut my gob and hit the Reply button.
I am guessing that through the haemorrhage of the aneurism you suffered a stroke, despite it being coiled? I am not familiar with how aneurisms affect the brain but from general knowledge it appears you made it through which is no bad thing. At any age that is a scary thing to experience, I was 44 when I had a bilateral, multifocal stroke and looking back, I think, wow, I was just out of my thirties. At 27 your brain will have a lot of plasticity which means it can begin to heal effectively, although, once bitten, twice shy which is pretty much the default position of most struck brains after the fact.
Anxiety response is there to protect us, at source it is actually a beneficial thing but when it spirals or hallucinates, that’s when it can disrupt rehabilitation but on the other hand, having to manage it can introduce positive and helpful everyday life resources. Mindfullness is a good starting point, there are techniques that can help such as grounding as @pando mentioned, controlled breathing, changing body temperature like having a bath or putting one’s face in a bowl of cold water, sensory meditation which can include music, singing, scents et cetera. The techniques can be cherry picked to suit your own individual personality and needs. You may already know about these kinds of things if you have already suffered from anxiety and depression, I would look into DBT (Dialectal Behavioural Therapy) which I find useful.
Time and laughter, I consider these my dependable friends. As time passes and you are exposed to sensations that at first spark fight or flight but result in nothing nefarious, the brain calms down a bit and realises the present danger has passed. It gets easier to rationalise these feelings without panic. Laughter, a coping mechanism for diffusing a potentially imagined threat. I don’t mean bursting out in fits of hysterical laughter, that might appear demented. It’s when one takes a concern that is causing anxiety and using one’s own humour response to disarm it. I often find myself making up and singing to myself nonsense songs about how I am feeling.
Many of us on this forum will have had or be experiencing what you are feeling now and that means you are not alone on this journey and we welcome all expression, even having a good written rant or vent can help put things into perspective.
Hi Elle and welcome to the community. Sorry you’ve had cause to join us but hopefully you’ll find us a friendly bunch and that this is a useful place to be for advice and support.
Everything you are experiencing right now is pretty normal. I think most of us went through a really bad period of anxiety after our stroke and as you mentioned every little twinge makes us worry that we’re having another stroke. I know myself I attended a&e a couple of times in the weeks and months after my Stroke feeling like I was having another but on each occasion it turned out to be ok.
Headaches are pretty common in the early days and as time moves forward you will start to recognize what is a normal feeling or Sensation for you after your stroke and what is something that you perhaps need to get looked into.
If any point you are worried you ought to go and get yourself checked as a precaution if nothing else. Doctors would rather you did that and it turn out to be nothing than you leave it and it turns out to be something you should have had checked.
Fatigue is something that needs to be managed and you will probably need lots of rest in the coming weeks and months. Listen to your body and rest as much as you need to. Over time the fatigue should start to improve but you do have to find techniques to manage it.
Hello from a fellow subarachnoid haemorrhage survivor. Mine was caused by CVST. If you’re on Facebook, there’s a really fantastic group on there called “Subarachnoid Haemorrhage Group - A Space For You” run by the Brain & Spine Foundation. There are lots of people on there in a similar situation to you who can offer advice and words of wisdom.
I had a subarachnoid haemorrhage 6 weeks ago and so am experiencing very similar things as yourself.
Whilst my headaches are now not as frequent or severe, I am learning to manage the horrendous fatigue, I too am struggling with the anxiety side the most. I also have a history of anxiety and have been on medication for this since my early 20’s, (i have just turned 40) have had CBT etc. I actually managed to get off my medication (a whole ballgame in itself if you’ve ever been on meds for it and tried to come off) just before my stroke. I totally agree though it is a whole new level of anxiety. I have likened it to feeling like I am walking around with a ticking time bomb in my head. I mean we are told that a subarachnoid haemorrhage is unlikely to happen again but it doesn’t stop the worry. I totally get it. It’s awful but it sounds like you have some good support around you so lean on them where you can. Don’t be worried to speak to your gp if your worried about anything I have contacted mine several times since leaving hospital and you feel stupid sometimes when it turns out to be nothing but if it puts your mind at rest then so what?
Do you have any hobbies to help you relax? I am quite arty so bought myself new supplies and whilst I don’t have the energy to do it every day there are days where I will sit for a few hours and watercolour or draw it helps me switch off for a while. I like to read but struggled with a lot of text on a page for the first few weeks so am starting to get back into it the past week or so. I love walking too but am yet to go out by myself and my husband does not like to walk due to his own health issues (we sound really old!) but I will get there and so will you.
I’m so sorry to hear about your SAH. I had one in 2019 aged 45. Mine popped and healed itself so didn’t require surgery. Yes, we are lucky, a lot don’t make it kind off 50/50. Anxiety can be crippling for some people, I myself do not suffer with it, but I have lots of experience/knowledge of it as I have been in recovery for 20 years. My ex and lots of people that I know have had terrible trouble when dealing with their anxiety. CBT therapy can be a useful tool for helping deal with anxiety. Fear is normally the root cause of anxiety, conquer/master your fears and it can help with your anxiety. Fatigue unfortunately never got better for me. It’s worse some days than others, I was diagnosed 2 years back with CFS which was an after affect of my SAH. That and a nervous system issue which can give me random pain. It can be so draining, but I’m a doer so I’m trying to learn to adapt with how I am now. Some is trial and error and some is common sense. I wish you all the best with your recovery, embrace the new you, try not to fight it. I did, but I’ve always done things the hard way…..see a wet paint sign I have to touch it to see….
Hello @elle2 and welcome. I too had a burst aneurysm that had to be coiled. I also had a cranioectomy to relieve the pressure on my brain. Are you talking and walking and eating. I can’t do any of these things and i’ve felt dehumanised and this has affected my mental health but just recently i’ve faught to eat and this has been a game changer, i finally feel like a human being rather than a device that needs charging, with a PEG pump. I now have the arduous fight to get on my feet. I was at a rehab hospital for 4 years RHN. Rehab… NoT. If you are not eating demand that you start.
Michelle, I just read your post and found it uplifting considering the hard times you are facing. Just to say that I wish you all the best with your recovery and new altered life, doctors forget we live this, we are not just medical guinea pigs! Thank you for being you.
Welcome to the community, I’m sorry to hear about your stroke and the difficulties you’ve been facing with anxiety. I hope some of the responses here have helped to put your mind at rest a little, we also have some information on our website about anxiety after a stroke which you may find helpful if you’ve not read it already.
I hope you’ll find this community helpful for your recovery. If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.
