I thought I’d share my story as it seems to be fairly uncommon. I had awful head and neck pain, it felt like my eyes were bulging and my ears were going to explode, felt dizzy, sick, GP said I’d pulled a muscle in my shoulder. “Come back in a month if it’s no better”. I tried to get emergency appointments over the next month, by now I was confused, lacking dexterity, couldn’t see properly. No appointments so I went to a&e. Same symptoms 10x worse the doctor checked my blood pressure, it was sky high. I was sent for a CT scan which revealed a subarachnoid haemorrhage and Cvst. I had rapidly deteriorating eyesight, I couldn’t even put my shoes on or speak a sentence. I spent 10 days in one hospital before they did a lumbar puncture, then blue lighted to another with a neurosurgery department. From there I spent 4 weeks away from my husband and kids. I had a temporary lumbar drain to try to clear the fluids and bleed. After 4 weeks my eyesight has improved but the pressure in my head hadn’t. I ended up having a lumboperitoneal shunt fitted 6 weeks after the initial episode and discharged 2 days after with a list of medication and a follow up 6 weeks later. I’m not even at follow up stage and everything feels wrong. Emotions, dexterity, brain, even eating and drinking.
Hello Elvira, just want to welcome you to this forum and let you know that lots of people will be responding in due course as there are many on here all with differing experiences of stroke. I am not good at the medical side of things (I was discharged after a week with no info apart from leaflets following a cerebellum stroke 14 months ago and I had no one to ask cos I live alone) but I recognise those feelings you describe. It’s very early on your new journey, one you didn’t want to go on…at the moment you are undoubtedly traumatised by it all, but it does sound like they now have it under control…it will be a matter of time for symptoms to subside…keep watching this space and you will find support xx
Hi @Elvie and welcome to the community. Sorry you’ve had cause to join us but you’ll find a friendly bunch here.
It seems like your GP perhaps lacked carrying out a few basic checks…like your BP.
The everything feels wrong symptoms you describe are very similar to what I had after my stroke. You are still very early into your recovery yet & you are bound to feel like you do. You have been through a lot. I thought the pressure in my head was never going to settle but overtime it did ease.
Just take things one day at a time. Get plenty of rest as you need to give your brain time to heal and do its rewiring. This holds true for at least 6 months. You will probably get better days and bad days but don’t be tempted to overdo things on the days you feel a bit better.
Write down all your questions for your folloe up appointment so you don’t forget to ask anything.
Thank you. I try to take it easy, I have a lovely husband and 3 children. He’s taken so long off work that he’s had to return before I’ve even had my staples removed. My littlest is only 7 and doesn’t understand that mummy is exhausted and can’t walk far out play like we used to. I think it’s all just a bit overwhelming.
It will be very overwhelming at the moment. You’ve been through a lot and I am sure you’re struggling to understand it all never mind your children. I don’t know if you’ve heard of the Different Stroke Charity but they have a book I believe that explains a stroke to a child. Have a look at this link
Hello, fellow subarachnoid haemorrhage and CVST survivor. I had mine two years ago. I’ve posted my story on here which you might find useful Subarachnoid Haemorrhage and then my one year follow up post Subarachnoid haemorrhage 1 year on
I never posted a 2 year update but I can tell you I’m pretty much back to normal, back working/driving and with a diagnosis of what caused the cvst. If you want to ask any questions please feel free to reply or drop me a direct message. I’m happy to answer to help you understand as I left the hospital feeling so lost.
Hi Elvie-- You have been through a lot. I don’t really understand all the medical words, but having had a stroke, I know that with brain injuries it’s understandable that during recovery “everything feels wrong.” And for me I felt really drifty and had a pressure feeling in my head and brain fog for quite a while. It takes a while for all the nerves to reroute and make the proper connections, etc. In the hospital they told us that our emotions would be very near the surface for a while. I would cry very easily, and, interestingly enough, I would also have laughing fits as well when something struck me funny. That has all faded away over time. Since every brain is different, no one’s experience is exactly like anyone else’s. As long as your doctor is on top of the physical aspects, I wouldn’t worry unless you have dramatic pain or symptoms. It takes a long time to heal the brain, so be patient with yourself. Wishing you good health, Jeanne
Thank you for sharing your story. I don’t know much about this, but it does seem very uncommon. It is good that you have your husband and kids to support you. I think you may find your kids will soon understand - kids are quite remarkable at picking these things up.
Welcome to the community and I wish you all the best.
Hi @Elvie welcome to the community and I’m so sorry you and your family have gone through this nightmare. That must have so scary for all of you
Quick question, did your gp even check your blood pressure that day? Because quite frankly I’m gobsmacked by that initial diagnoses. Did you describe those same symptoms to the gp that you’ve just described here? I think that needs reporting. I just don’t know how they came to that conclusion with all all those symptoms of the head! Your gp should have advised you to go to a&e with those symtoms.
Thanks for responding. The GP prodded my shoulder and said “you’ve pulled a muscle” and prescribed cocodamol. Didn’t check my blood pressure or even look at my eyes. When I said my ears were wooshing really loud like air she said it’s normal.
I agree with your suggestion this needs reporting. The GP has been negligent and the resulting consequences are severe.
This is actually diabolical!
@Elvie - Lorraine is absolutely right and you really should lodge a formal complaint. Also the fact you were not able to get emergency appointments suggests this GP practice is not fit for purpose.
You (and your family) should not have had to go through this and it needs a response from the NHS. If you are unable to do this yourself, you should seek help from PALS (Patient Advice and Liaison Service) or Citizens Advice Bureau.
You may wish to speak with the GP surgery first, but I suspect that will be a waste of time.
I don’t wish to cause you any undue distress but, you could just have easily died that day. Grossly misdiagnosed!
I suggest you change your gp and put a serious complaint in, start with the practice manager. My adult kids get their blood pressure checked even if going about an in-growing toenail. It’s just common basic practice to check the vitals.
I know you won’t be anywhere near ready to do anything like that but your hubby might I certainly wouldn’t trust that gp again, don’t see that again.
Welcome to the community, and thank you for sharing your story.
It sounds like you’ve been through a lot in a short space of time, and that’s a lot to take in. What you’re describing after such a serious event can feel unsettling, especially before you’ve had your follow-up.
I can see you’ve already had some thoughtful replies from other members here. If it helps, we have information on the effects of stroke and what people can experience during recovery.
You can also contact our Stroke Support Helpline on 0303 3033 100 or email them at helpline@stroke.org.uk if you’d like to talk things through or ask any questions.
Wishing you good health, Jeanne
I certainly wouldn’t trust that gp again, don’t see that again.