ClareM

Hi Marion You really do seem to have gone through the mill since your bleed, I really feel for you. Have you tried chasing up your Neurology appointment? I know there are delays post Covid but 18 months is a bit excessive. I had my bleed 7 years ago and in early 2021 I developed a stutter for no reason. I had speech therapy who eventually referred me to Neurology. Though I had to wait a long time for appointments and a subsequent MRI I was recently diagnosed with Functional Neurological Disorder. A much-misunderstood disorder with little support. Basically, it is a problem with the networking in your brain. I am not saying that this is your problem, but it may be worth looking into, apparently it is quite common immediately after suffering a bleed. Neurology do not know if mine was related to the bleed or other issues post bleed. Don't give up, hopefully you'll get some answers soon. Clare xx

Hi CHall A NASAH is a non-aneurysmal subarachnoid haemorrhage. It means that the haemorrhage was not caused by an aneurysm, or no aneurysm was detected. NASAH accounts for about 20% of all SAH. A SAH/ NASAH is a haemorrhagic stroke meaning blood leaking onto the surface of the brain where as, an Ischemic stroke is caused by a blockage. I had a NASAH 7 years ago, no aneurysm was ever found. I asked a Neurosurgeon about this, he said they were often caused by veins bursting or an aneurysm that blew itself out totally so could not be seen. However, I have been unable to find a definitive answer as to what caused mine. The cause is not the issue, it's more the damage caused by the blood being in the brain where it's not supposed to be. Hope that helps Please feel free to tell us more about yourself or ask any questions. Although we are not medically trained, we can offer lots of advice and support. Clare xx

Hi Crystal, I too had a NASAH and had the severe back pain which radiated down my legs. I was told this was the blood dissipating down the spinal column. It passed after a couple of weeks. I'm not so sure about the hot sweats - I was menopausal when mine happened so would have probably put sweats down to that. Check out my profile and you will see my story, I've put the link below I can't comment on the medication being the cause of the bleed, we aren't allowed to give medical advice. Check out your theories with your Neuro unit and ask if there could be a link. He's early days so tell him to take it easy, rest and drink plenty of water. I was out running when I had my bleed, but I know that quite a few people here on BTG were being 'intimate' when their event happened, I think it is fairly common for it to happen when you are exerting yourself. Try not to worry too much, the chance of having another NASAH is very low. There are plenty of stories on the site which will tell you how others have recovered well, take a look at them and get your husband to take a look too. Take care and welcome to Behind the Gray.

Hi Faith, welcome to BTG glad you found us so soon. Hope we can give you some reassurance at this very stressful time. We are not medically trained and can't give you a definitive answer , the medical team dealing with your husband should be able to answer your questions. Vasospasm is common post SAH which is why Nimodipine is given, hopefully this will work. Given that he has had a another scan that didn't reveal anything maybe it's just his brain saying it needs a rest. For the first 10 days post my bleed I was very confused, I remember very little of it but have been told I talked a lot of rubbish. I was also in pain a lot of the time which was managed by painkillers. Have you got anyone else around who can support you? Whereabouts in the UK are you? Speak to the team treating your husband and ask the questions you need answering. Most neuro wards and staff are very supportive. He's in the right place being treated by the right people. Hang in there and feel free to vent here on the site, there are always others who will be a shoulder to cry on. Please keep us posted, I will be thinking of you. Clare xx

Sorry I missed your anni-versary Andrea. Love your posts from the wild islands you live on. Keep on posting and enjoying life xx

Hi Majella I too had a NASAH in 2015. My original scan showed blood in the tentorium, cerebellar, suprasellar, pontine and ambient cisterns. Small amount of ventricular blood. For most patients with haemorrhage there is no specific area of damage. The blood escapes over the surface of the brain and causes irritation and symptoms all over the brain. Since the bleed I have struggled with attention, memory, concentration and fatigue. More recently (the last year or so), I have developed a stutter for no reason. I have had speech therapy which was some help and was referred to Neurology. The Neurologist has asked for an MRI to see if there have been any changes since my bleed which have caused it. If it shows nothing she feels it may be a Functional Neurological Disorder. This is a little worrying as there is no single specialist who deals with this. My MRI is scheduled for mid-August, hopefully get some answers then. Take care Clare xx

Happy Anni-versary Michelle, sorry to hear you have had a rough start to the year but glad you have managed to have some ME time more recently. How lovely of your niece and her partner to help with your garden, I hope you get to send some more quality ME time there. Sounds like Verdun has been very unkind and I know you have had issues there for many years, I just wish you could find a way to resolves things that would suit you both. Good luck with the driving lessons - go for it Michelle you've got this! Clare xx

Hi welcome to BTG. We are unable to give medical advice but I feel your best course of action is to speak to your GP. It would be unusual to have delayed symptoms but only a doctor would be able to confirm this. Headaches after SAH are common but usually in the period soon after the event. Get it checked out and let us know how you get on. Clare

Congratulations on 10 years. So glad to hear you are enjoying life to the full. Enjoy those pints 😊

Hi Jamesyreid Welcome to BTG, glad you found us and that you are finding the site useful. I know in my early days it was a godsend. I too suffered a NASAH but mine was complicated with Hydrocephalus. You had a very short inpatient stay, was that due to Covid? The post bleed symptoms you describe seem fairly par for the course. However I am unable to comment on the sinus-like pain. It is not something I have heard of before and wonder if you maybe have a sinus infection? Were the medicines you have tried purchased or prescribed by your GP? Maybe a course of antibiotics is required? The light-headedness could be due to fatigue. It's very easy to think you are doing fine and can do that long walk - and yes you can do it at the time. The problem is the way it makes you feel later or the next day or even week. A good week will often be followed by a bad week. As you felt so good you did a lot on the good week - and pay the price later. It's a very hard lesson to learn, one I still struggle with even 7 years after the event. Anxiety too is a very common issue post a SAH and even more so I think after a NASAH. No one knows what caused it so what's to say it won't happen again? The only solace I can give you is that re-bleeds are very rare. A Brain Surgeon I spoke to told me that A NASAH was probably caused by an aneurysm that blew itself out leaving nothing to show. Did you have any scans or angiograms post the initial bleed? 5 weeks is very early in your recovery, I was still sleeping a lot at that stage, like you I considered myself fairly fit prior to my event and it was hard to accept that I just couldn't do much for a while. Take your time and build up gradually, things will get better just maybe not as quickly as you'd like. I'm fitter than I ever was and have got back to running and gym classes but it did take time. Regarding driving I can't offer much advice except to call the DVLA. I had an EVD which resulted in an automatic 6 month revocation of my license. I think your treating doctor may have to confirm with the DVLA that you are fit to drive - but don't quote me! Keep drinking plenty of water and rest, you'll reach you new normal one day - hopefully soon. Clare xx

I too asked whether my mum knew where I was and what had happened though she had passed away 2 years earlier. As others say confusion is a normal part of recovery and hopefully this will lessen with time. Hang on in there, she’s made it this far so hopefully she’s a fighter and will make a reasonable recovery. take care of yourself too as she’ll be needing you. clare xx

Hi June, I think it may be worthwhile having a chat with your doctor. This could be anything so best get it checked out. My job was stressful and I returned after 13 weeks as my sick pay ran out. I didn't cope well so moved to another job. I have had to do this 2 more times reducing my hours every time. I now work 3 days a week, Tues, Thurs, Fri. Half the hours I was working pre bleed but just about coping now, I am still floored on a Friday. I am a pharmacy checking technician so need to be able to concentrate for long periods which is very taxing. Take as long as you can before returning to work and phase back slowly if possible. Just bear in mind that you may have to ultimately reduce hours to be able to cope. It's a case of reaching and accepting the 'new normal' then adjusting to it. Take care and take it slow! Clare xx

Hi June, how is your balance? If that is affected it's definitely worth having a chat with your neuro team. More than likely to be that you have over done things, as others have said you are still very early in your recovery. I hope you can get some answers that will settle your worries. Clare xx

Hello Alan welcome to BTG glad you found us and are finding the info on the site useful. Can you tell us more about your event and how you are managing since discharge? There are many members here who will be interested to hear more from you and be happy to share their experiences. 7 years yesterday for me. Home is the best place for your recovery, drink plenty of water and rest. Clare xx

Hi Tanja I experienced this pain post by bleed in 2015. I was still in hospital but the pain in my lower body and legs was excruciating. I was told it was the blood dissipating down my spinal cord. I was on regular painkiller while in hospital and for a time after for both the headaches and the leg pain. Make sure your husband is taking regular prescribed or recommended pain killers. The pain did stop after a week or so. It sounds like he has done really well only being in hospital for 5 days, however his recovery journey is at an early stage. Noise will be a big issue in the first few weeks, try and protect him from that. I couldn't have the volume very high on the TV. If your kids are young try and impress on them the importance of being quieter around daddy. His memory may not be as sharp as it was before and he may not be able to be as physically active as before. But keep faith time is a great healer. I am fitter than I was before my bleed which shows that you can regain physical fitness after a bleed. My thoughts are with you and your family. I hope you continue to find some reassurance from the site, feel free to post any other questions you may have. Take good care Clare xx

Happy Anni-versary Super! Keep those bucket list ideas forming! Clare xx

Hi Carolyn, I too suffered a NASAH coming up for 7 years ago. I can't surmise as to what happened to you at Christmas but you should have been able to get some answers from your GP or the Neuro unit you were treated at. I know a lot of such services have been cut during Covid but there should be someone you can contact at the hospital you were treated. As Tina says it's not whether an aneurysm ruptured or not but the amount of blood and any complications that causes issues. I had a large bleed with hydrocephalus which was treated with an external drain. My life has changed beyond belief since my event but the biggest change has been in the amount of work I can do. Are you still working and if so have you altered your working hours? I now only work 3 days a week, a gradual reduction which has been forced on me since my initial phased return. With regards to support, I have had incredible support from an NHS Neuropsychologist who has helped me with coping strategies for the cognitive changes I suffered. She has also helped we come to terms with how my life has changed. I also still attend meetings (online at present) that are run by the Nurse Specialists from the unit where I was treated. I have made good friends with one of the other ex patients - it's nice to be able to chat to people who understand. Same as the people on BTG. I hope you get some answers. Clare xx

Congratulations on your first anniversary. I think you should celebrate - as Tina says a celebration of life. My husband always remembers - mind you it is on the calendar - and buys me some flowers. I always think about that day on my anniversary, it's hard to forget such a momentous life changing event. Hope you continue to keep well Clare xx

Happy Anni-versary Louise, 22 years wow! Let's hope you have many more happy times xx

You are really early days, at your stage I was still in hospital- I did have the added complication of Hydrocephalus. We are unable to give medical advice but the symptoms you describe seem similar to most who have had a SAH. I never felt anxious at night particularly though there are others that did. Write all your questions down and make sure you ask them at your Neuro appointment. What you describe appears normal so try not to stress, it will only make things worse. Clare xx

You will see improvements but they may be slow. I think post bleed everyone has to find their new normal and often the hardest part is accepting what that is. For me it’s been a rocky road as I am so used to pushing myself. Realising that that isn’t my best path has been hard to accept and even more difficult to change. Enjoy those walks and let us know how it goes with your neuro doctor. clare xx

Hi I was out running when I had my bleed and was keen to get back to it afterwards. It took a good couple of months before I was able to start exercising again so to walk a mile after 2 weeks is impressive. I think you need to speak to your neuro doctor about how much exercise and when. Give yourself time, you were fit prior to your PMH so hopefully you will be able to regain that fitness. I now regularly run 4-5 miles three times a week with no issues but working for a full day still floors me - people can suffer from different types of fatigue, mine is brain fatigue. However I do find when my brain is saying 'no', I can go for a run and then feel much better. Take it slow and listen to your doctors advice and hopefully in time you'll be back to where you were. Take care Clare xx

Hi Karissa please don’t be too disappointed, you are really early days post bleed. At your stage I was still in hospital. It took me a good month post discharge to be able to go for walks on my own or with my dog. Like you I run - though not marathons- and I was keen to get back to it but no way could I have done much for the first few weeks post discharge. However I have got back to running, it took time and I completed a C25k programme to get me back slowly. I now regularly run up to 5 miles three times a week with no issues. In fact running helps my brain fatigue. It’s the one thing I feel I can do better than pre SAH. So take it slowly, rest when you need and be kind to yourself. You’ll get there but maybe at a slower pace than you want. Clare xx

Hi Jean sorry to hear that you are in pain, think it’s so easy to attribute everything to our SAH when often it is not connected at all. I work as a pharmacy technician and although I cannot give medical advice I can give you information. Steroids such as prednisolone are sometimes given at very low doses long term here in the U.K. You need to take the advice of your health care giver particularly regarding pain relief. Regular Paracetamol (Tylenol) is often prescribed as well. People don’t like taking pain killers but if you are in pain sometimes it is required and can make a massive difference. Listen to what they say and I hope things improve for you soon. Clare xx

Hi Sarah my bleed was 6 years ago in Feb 2015. I can honestly say life has never been the same since but that’s not saying it’s been bad. I've had a lot a lot of turmoil with work but that’s mainly been self inflicted as I have this tendency to push myself. I’ve changed my job several times since my event mainly because of stress. Funnily enough I have ended up in a job role similar to when it happened but with drastically different hours. I used to work 42 hours a week and now it’s just 22.5. I’m still floored on a Friday, I struggle with fatigue and have difficulty paying attention. It’s been a struggle and I have had major issues with acceptance. But it’s not all bad. I feel I have a better work life balance now and it’s good to be able to exchange my experiences with others who have been through the same thing. You have a 3 year old who will take a lot of your energy, get all the help that you can so you can rest too. I don’t envy you that, it must be very hard. Take good care Clare xx