9 months from SAH brain still feels the same

[Blu37]

Morning,

Not been on for a bit as I’ve been at rock bottom as I call it , I’m 9 months on from my SAH I have improved mainly physical but my brain still feels fuzzy drunk from morning to night , I can’t drive or go out on my own due to my brain feeling and I am a prisoner in my own house , I did access Paul for brain recovery every two weeks for 1 hour at their quiet social time but if gets cancelled in a member of staff on holiday , they still run the busy social times twice a week but they are too much also I get a special taxi that comes into your house collects you check door locked etc but the 10 mins ride return journey has gone up to £36 .

when will my brain feel normal again ? I’m struggling still feeling this way after 9 months still wish I could just put my coat on grab my dogs lead and go out .

still waiting to see the specialist neuro physiologist ( think that’s what called )

so sorry for ranting on but still struggling with the new me and it’s hard listening to family talk about just popping out here and there . We go to lakes in next couple of weeks and I can’t walk far without feeling more dizzy , neuro fatigue just don’t know what to do without spoiling holiday , I do walk with a crutch to steady me sometimes . Again sorry going on Hope everyone else is doing well xx

[Alibongo60]

Hi Blu, I can sympathise as I have been in same situation. My aneurysm ruptured 2017, and brain fog has never really cleared completely, I have problems with balance, memory word finding and fatigue. I try not to get over tired as that makes problems worse,, I have an escort if I go out, family don’t trust me on own as Annie ruptured walking the dog so they are quite cautious with me. It does take some getting used to, and it is still early days for you, and still time for some improvements, so don’t be too hard on yourself. Lots of nice people on here will help and advise if they can, enjoy your holiday, take it easy and relax love Alice xx

[Blu37 in reply to Alibongo60]

Thank you for your reply I just thought by now the brain fog , I call mine drunk lol not that I ever have been would be better by now , mine happened walking the dog . I have noticed too much noise , activity or stress makes me more drunk , family often hear me say oh today I’m one bottle of wine then another 3 or 4 . I think if I had answers like in xx amount of months this drunk feeling will be gone it’s my biggest struggle . My family won’t let me go out on my own either , take care Alice and thanks for reply x

[spideyman in reply to Blu37]

Believe it or not you’re getting better but, before it seemed like a rapid improvement, now you may have plateaued and don’t see any improvement

[Blu37 in reply to spideyman]

Yes you are right I’m not seeing any improvement.

[JULIETstevens]

Keep going. You can do it. It will get better. I'm 4years post and am mentally stable and physically improving steadily. You just need to work hard and stay positiveJuliet xx

[brandyga]

Hello Blu37 - This is my first post here on this site. I had my SAH on 9/3/21 and was lucky enough not to have any physical bad effects from the event - mental, that is another story. I wanted to start by thanking Alibongo60 and yourself for the laughs -- "Annie" ( I am going to use that one) and the bottle of wine scale both made me laugh!

My lingering problem is headaches/migraines. Pretty much daily. We still haven't figured out how to manage them, so I am still out on long term disability. I say all this to let you know something that I did recently that made myself feel better. I started at the end of December actively tracking my headaches, their severity, characteristics, etc. using an app called 'Headache Log'. Last week I downloaded all of the information into a spreadsheet and averaged out my headache numbers - (scale of 1 to 10, with 10 being worst) and added notes about different medication I have tried throughout this process. End result being that the latest thing we have tried has actually lowered my headache severity by 1/2 a point. I can't tell you the mental lift that gave me. Had I not kept those records, I would have never realized that.

This healing process is SO MUCH slower than we were led to believe. Just wanted to share what made me feel better.

All the best with your struggles. One other thing that helped me feel better was getting off of the lyrica they had me taking 3x day - that made me feel drugged up all the time - I was done with that and told them I wanted to stop it. Did wonders for clearing up my fogged brain.

[Blu37 in reply to brandyga]

Thank you for all that appreciate it

[spideyman]

I’m thinking you live in Hull and Hull Headway might be beneficial to you

[spideyman]

I’ve been recovering since 1987. I suppose I’ve had a few hiccups like 2 more brain haemorrhages and a stroke.

You mentioned in 1 post about Paul for Brain. This is why I guessed at Hull.

I’m from Hull but now live just over the Humber Bridge so I attend Hull and Scunthorpe Headway

[spideyman]

Sorry that sounds a bit depressing telling you I’ve been recovering that long.

What I’ve not mentioned if what you can achieve. During that time I’ve trekked the Gt Wall Of China, crewed a schooner to Holland and back, World record abseil from very top of Humber Bridge towers. Took part in the Sea Of Hull.

Don’t feel down. Idve never done those things if I hadn’t been head injured

[Blu37 in reply to spideyman]

Wow that’s amazing what you have done , yes I’m in Hull I’ve not been to headway hull , been to Paul for brain recovery a couple of times to the quiet sessions only 4 of us usually , the way my head feel I can’t drive at moment , feeling drunk all the time lol . Do they have meetings or do things at headway . My achievement after my cancer near my spine before my SAH was to build my walking up and go up one of the mountains in the Lake District . Looks like it’s going to be a long long time , I wanted to wild camp at the top but hubby does not .

[spideyman in reply to Blu37]

I was in the Army when I was 18 (just before the haemorrhages and wild camping is digging a hole and sleeping in it.

Headway is far better but there’s lots of Headway groups and it’s very established

[Blu37 in reply to spideyman]

Not quite the wild camping I was thinking of , I’d have a tent , thanks for replying I will look into headway in hull take care

[spideyman in reply to Blu37]

Headway are having a coffee meeting at the Danish Church on Friday 1 til 3. Be sure to mention David informed you

[Blu37 in reply to spideyman]

Thanks but I’m away in the lakes will try to get to next one

[Blu37 in reply to spideyman]

I’ve just looked and they have one on 17th an evening so I will try and get to that one thanks David I will mention you Linda

[spideyman in reply to Blu37]

That’s right. There’s a coffee meeting on the first Friday of every month but there’s an evening meeting (the main one) on the 3rd Wednesday every month

[spideyman in reply to spideyman]

I mentioned you at Headway today and they’d be pleased to see you

[Blu37 in reply to spideyman]

Aww thank you I appreciate that

[spideyman in reply to Blu37]

You’ll find your life will change as you’ll meet others that have head injuries.

[Blu37 in reply to spideyman]

Thanks Dave I hope so and not to feel so isolated Linda

[spideyman in reply to Blu37]

Just to nip this in the bud. It’s David

[Blu37 in reply to spideyman]

Sorry it was my prediction text never checked I know it’s David

[JULIETstevens in reply to spideyman]

i bhad my brain haemo in 2018. last year we flew to scotland and went wild walking lots. this year we've camped 3 times. i'm writing novels now and getting involved in local newsletter in my quest to start a new career as an author. how about you??? juliet x

[JULIETstevens]

I did have brain got and serious deja vuebus but with time both have faded, especially the dean vu. Brain fog is improving and I'm thinking clearly. I start art class this week and going to a coffee morning in the village. Getting out and mixing with people helps my recovery I think

[JULIETstevens]

your holiday to the lakes goes well, well done for wanting to go ahead with it. I have just been on my third camping trip with hubby and our two daughters who are under 5! i managed to shower and dress independently and even wash up and play with our daughters. It just shows, family life can still function okay. keep fighting.xx

juliet

[Blu37 in reply to JULIETstevens]

thank you Juliet , it was hard at the lakes as neuro fatigue was horrendous but we did have our grandson with us who has adhd and our daughter , had to go in wheelchair when we went on walks reluctantly, still enjoyed the break away it was in a lodge with hot tub as we felt in our caravan would have been too much with the grandson . We are going up to lakes again next week with the caravan just me and hubby , a quiet few days and also looking for a property to move there . So glad you enjoyed it with your children and managed to do things that’s brilliant , keep making memories x

[JULIETstevens in reply to Blu37]

hi again. where in the lakes are you going to? do you walk with a stick or just arm support? good on you for taking the step and going away. it sounds like you have a lovely family around to support you, though i appreciate they may be challenging for you to be around.... but blood and family are the best support for you i think though- blood is thicker than water and all... what job did you do (if any) before you were ill and what do you hope to do now and in the future? i had to give up my successful career as a lawyer when i got ill, but every cloud has a silver lining as now i get to be an author, which is my dream anyway. life can go on with you, just grab the opportunity... x juliet

juliet

[JULIETstevens]

i felt light headed and drunk for a while- i had a brain haemorage in 1018m but there is good news. mine wore off over time and as medication reduced. i lost weight as meds reduced and started sleeping normally again, all as meds reduced so hang on in there and await improval as your meds go down (hopefully). juliet xxx

[Blu37 in reply to JULIETstevens]

thanks Juliet I have an appointment (telephone ) with my neuro rehab consultant soon he might look at my meds , it’s 1 year on this Friday my ruptured brain aneurysm happened so emotions are running high x

[JULIETstevens in reply to Blu37]

in terms of anniversaries, look back and remind yourself how far you've come. for me it's been a bumpy road but now i'm happy with life (save for losing my independence! i feel a bit like an 80 year oold. we all expect to eventually loose our independence as we get old, it's just really upsetting to lose it while you're still young- i find anyway. got to swallow my pride and renmind myself how lucky i am to be alive. i ask myself- would i rather be dead or alive, living like this. well, ialways answer the latter, in which makes me feel a bit happier. you have to find ways of making it 'okay' for you too..... hope you find them xxx juliet

[Blu37 in reply to JULIETstevens]

aww thank Juliet that’s exactly how I feel , even though I still don’t like the new me at least I’m here maybe bit different funny at times with my no filter .Told hubby he has had the cheapest year ever as I can’t go out shopping and I’m permanently drunk yet it’s not cost him a penny lol , just hoping this fuzzy drunk brain will hurry up and repair it self . Take care Linda x

[JULIETstevens in reply to Blu37]

haha, i tell you what's also cheaper for our hubbies.... i started packing up old season's clothes so at end of winter i pack those up and get out the summer ones and vica versa. dueto short term memory i then forget and the next time the season comes round and i unpack them again i'vr forgotten what clothes i had the previous year so it's like i've been on a big shopping spree and ended up with lots of clothes i love, all in my size...... do share your ways of dealing.......

[Blu37 in reply to JULIETstevens]

ha snap that’s exactly what I do , love seeing new things well I think they are new, what’s even funnier hubby has always had a bad memory and even he things they are new clothes lol x

[JULIETstevens]

walk with that crutch- the point is you are walking so well done. remember how much worse things could so easily have been... and enjoy your holidays. take little steps and soon you'll find you've gone far.....