Sah 28/01/2019

To look at me you would say that there is nothing wrong, I have all my motor skills but 3 nearly 3 months since having my aneurysm coiled I am suffering from unbelievable lethargy and am so so tired all the time, one hour a day of say painting and I'm done in for a day or two. Is this normal? I have a other aneurysm which they will decide on what to do with it later this year. Any feed back would be greatly welcome.

[ErinSAH]

Hi Jason,

sorry to hear everything you have been through, sounds like a lot.

I had an SAH in 2012, a while ago now and I was/am the same in that I look so normal. It’s difficult when you are struggling, others don’t see that you are and carry on expecting you to be as you were before it happened. Fatigue after very small tasks was one of the biggest things I had to deal with, my brain had to learn to process things again, this takes time and a lot of energy, making me very tired, but beyond tired. It’s unfortunately normal after any brain injury to be fatigued.

But this does get better with time and anything else also gets better over time. Take breaks and rest whenever you can and if you feel tired, don’t fight it, rest, it’s what your brain needs.

Good luck x

[Hidden in reply to ErinSAH]

How long does it take to get let's say 80 per cent stamina back?

[ErinSAH in reply to Hidden]

I’m not sure, it’s so different with everyone. I still get very fatigued now but just not as much and not as bad. I also got brain fog, making it difficult to think and understand, this has got much better over time.

But as time goes on you can learn to manage it better. It takes time though, you will need lots of patience.

[Hidden in reply to ErinSAH]

Early doors for me, frustrating doesn't begin to describe it. Worked every day of my adult life, now just wasting away the hours/days/weeks

[ErinSAH in reply to Hidden]

I was in my 20s when it happened to me, my career just starting to take off. I was working full time while studying part time and it stopped me in my tracks too, for quite a while. But with time I have been able to go back to work and the gym and almost everything I did before with a few adjustments. Just can’t do as many things at once and a few things that give me headaches.

But it’s such early days and I know it’s hard but try be patient with yourself for now. Rest as much as you can and need to. You are recovering and it’s a very important thing for you to do.

[Tracy331]

I'm due my op soon I'll let you know I hope not cause I was hoping to get back to work shortly after. But I'll keep you informed

[Hidden in reply to Tracy331]

Hope all goes well

[Tracy331 in reply to Hidden]

Thank you it's frustrating waiting checking may everyday for Letter

[Hidden in reply to Tracy331]

All I can say is the surgeons that do the work are extremely talented they are my heroes, without which I'd be dead. X

[Jgob1968 in reply to Hidden]

Hi Jason. I had my surgery last May 2018. I went thru the same thing you describe. I would try to explain to family and friends when I say I’m tired .... I am completely done. I would get so frustrated bc I felt I should be doing more and thought everything would be back to normal within weeks of the surgery however this simply was not the case. As I’m looking at my 1 year anniversary since surgery I can say I finally feel like my old self. For me, it took approximately 6 months to get to my ‘new’ normal. 🙂

[RuthJ in reply to Jgob1968]

Hi I’m having mine coiled and a glow diverter on Tuesday I was hoping to go back to work on the 7th May does this seem impossible to those who have been through treatment. I already have fatigue as I have had breast cancer surgery and radiotherapy in the last 18 months. Advice appreciated thanks

[Hidden in reply to RuthJ]

I would think that is far too soon to return too work, 11 weeks since my op and mentally would love to go back too work but can't because of extreme fatigue. But everyone is different

[RuthJ in reply to Hidden]

Thanks Jason I work from home office job does need concentration so I am guessing I will have to wait and see.

[Hidden in reply to RuthJ]

I couldn't walk without a stick for 1st 2 weeks, getting out of a bath unaided was impossible. Head pains as if having watering can spinkling water directly on the brain for first 6 weeks. Getting better is an extremely slow process, the tiredness is unbelievable and extremely difficult to explain and come to terms with but I'm only 11 weeks in I e gone from earning between 1500 - 2000 a week too 630 a month universal credit. I want to return to work assp.

[RuthJ in reply to Hidden]

Hopefully you will be better soon and ready to get back to work I will just take each day as it comes.

[Hidden in reply to Jgob1968]

I hope so, 6 months if I'm back to having enough stamina to return too work that will do for me, 11 weeks since op and I'm exhausted doing nothing.

[Tracy331 in reply to Hidden]

I look forward to reading your messages you give me hope I'll be ok the more I read them the more normal I feel cause you realise you're not on you're own I find the exhaustion unbearable i. Have done everything for myself my whole adult now just got a letter from work they are now finishing me cause I can't go back to work till after work good huh

[Hidden in reply to Tracy331]

Do you have a pension / are you in a union ( I was a union rep for 9 yrs) if so you may be able to draw an enhanced pension if finished on health grounds. It's disgusting that this goes on. The exhaustion will ease but very very slowly I'm exhausted every day but determined to get better. The frustration is friends and family don't get it.

[Tracy331 in reply to Hidden]

No to pension only started that last yr it's life I'll get another job when recovered enough I've always worked least I've I've still got a life after last 3 month with stroke now this in my eyes I'm fit and healthy x

[Hidden in reply to Tracy331]

It matters not when pension started, if you get off on I'll health they pay it as though you made full contributions up to retirement age

[Tracy331 in reply to Hidden]

I wil

[Navillus in reply to Hidden]

I think it's gonna be a steady rise to near your old level and acknowledge there will be days you have to take to do nothing to recuperate. I some days think I'm back to normal but if I do lots in quick succession I have a day where it wipes me out so have to rest for a day listen to myself. They are becoming less and less as time goes on. It's frustrating because you want to but it's not evident to everyone else.

[Hidden in reply to Navillus]

I get it all what you have said as I am the same

[Navillus in reply to Hidden]

When you're used to being a hard worker and conscientious about our work, its frustrating we can't be back to what we know we were capable of doing previously. Plus there is the financial adjustment and worry about paying the bills. However I think we’re our own worst critics and some days you just have to accept it. If I don't I end up worse. Easier said than done when have others expectations so very much empathise. Maybe won't get there 100mph but a more casual 70 mph 🤞

[Hidden in reply to Jgob1968]

It's other people, they have expectations of how you are, because you look normal. I try too explain the foggyness and fatigue, they don't understand

[Jgob1968 in reply to Hidden]

I totally agree with you! A person looks absolutely fine... however that’s not the case. I can’t count how many times I would blow up at friends and family saying ‘I’m not okay’ they eventually believed me! Lol. I have learnt to do things at my pace and to heck with anyone that has an issue with it!!! I am thankful for my neuro team and am truly grateful for all they have done and keep doing however I was not warned how rough the recovery was going to be. I wish someone had told me so I could have been prepared and have known what to expect.

[JoanH75 in reply to Tracy331]

Hope all goes well for you, Wishing you Well.

[GrannyTWest]

Hi Jason, sorry to hear about your aneurysms and treatment. I had a similar experience - a SAH followed by coiling and the discovery of a second aneurysm, this was Oct 2017. It took me until May 2018, that's about 7 months, to get back to nearly normal, I have decided to 'watch and wait with the untreated aneurysm at least for now. I too am sooooo fortunate to have no desperate side-effects apart from tiredness although it has improved. I guess we are all different, my advice would be listen to your body, rest if/when you need to (that's harder I know if you are working), look after yourself and let nature do its work. I hope this helps Jason.

[Hidden in reply to GrannyTWest]

Sound very similar too myself, if it takes me 12 months to get back 80percent stamina then I'll take that, thanks for advice

[Hidden]

Contact ACAS if they finish you. Most employers will make mistakes when trying too rid themselves of staff thus they will be liable, fight them all the way. Citizens advice may help.

[Tracy331]

Thank you I will look into it I actually liked my job with being on my own it was company as well I'll miss thank you Jason xx

[Danger19]

Hello my lovely,

My accident happened on the 14th of January this year. It caused a massive traumatic brain injury, broke the base and most of the right side of my skull, subarachnoid haemorrhage and three blood clots. But I am one of those annoying people who has had no effects from the injuries. As a nurse I know that some ADHD medication is prescribed and help with chronic fatigue. Obviously I am not a Doctor but I have many medical professionals as friends who can provide information and help for any medical situation. If you would like me to find out other possible medication, just message me back. I know some people will think that I’m trying to be a know it all but I am just trying to use my knowledge and contacts to help where I can. I know how lucky I am and I have been told that there are only two other recorded people that have experienced miraculous recovery. But I know others are suffering and finding it difficult to obtain effective medical help. Medical professionals can be very thoughtless and reluctant to offer effective help. Anything I can find out that may make a productive difference for you I am happy to do. Please hang in there. There is an effective answer for you. I wish you peace and happiness for your future. Just message anything I can help with, just ask.

Take care,

Vikki

[Hidden in reply to Danger19]

Great thanks

[Danger19 in reply to Hidden]

No problem my lovely. I will keep looking and asking my friends who are medically qualified. If I find anything that is confirmed as extremely effective for fatigue I will be sure to let you know so you can move on and leave your accident behind you and get on with an excellent life. You will be in my thoughts.

Take care,

Vikki

[Danger19]

Hello my lovely,

I just wondered how you are doing, I hope it's still good for you.

Take care,

Vikki

[Hidden in reply to Danger19]

Not great at the moment, too much going on with pip, doctors ect and my short term memory is shot to bits( now carrying a diary with me to aid memory). But also swear I'm getting stronger every day.

[Danger19 in reply to Hidden]

Hang in there my love. You have come so far and done so well! I do understand how you feel. It's so difficult when your experiencing memory problems. When I first came out of my coma I couldn't remember who my daughter was. I kept saying she was my sister. When I think back I am devastated! My daughter is only 10 and it affected her badly, especially as she was coping with what she saw when she found me the night of my accident. The only thing that helps me to cope is that I remembered who she was after 12 hours. I'm so glad you are positively feeling stronger. I really hope that your memory will stabilise, it may improve with time. Apparently Vitamin B12, ginkgo bilboa and omega 3 fatty acids are natural remedies that help with memory problems. Also caffeine is suppose to help stimulate memory.

Please don't feel alone. You are in my thoughts.

[Hidden in reply to Danger19]

Thanks

[Pomchilove]

Ur not alone been tierd all the time is normally 7 year on from my op and every day I'm still feeling chronic fatigue