Bleed on Brain

[Pompom1]

I was taken ill back in August 2018 with a subheroid hemmorage ,,was in hospital at King's college in London ,,which care I was given I cannot fort but I'm under the care of my GP and been to him several times saying about constant headaches and fuzziness and fatigue his answer is to go back to my job take paracetamol and not to bother kings as they treat ill people all over.I have told him of high blood pressure as I check this 3 times a week I just don't know what to do.I am awaiting the results of a Mri scan which I had in October at King's. Surely this isn't the treatment is should be getting from my own doctor?

[Gaia_rising]

Hello, Pompom1 and welcome to the forum.

With the best will in the world, what your GP is giving you is 'general' advice, that's what they're there for. "Sitting at home won't help." is right in a way, but your GP isn't a neuro-specialist, brain injury recovery/adaptation is longer and more complex than recovery from any other type of surgery.

I'd suggest contacting your local Headway branch, to see what liaison-type services are available in your area, I eventually ended up with a referral to 'Workplace Well-being' after my return to work didn't go exactly according to plan. (Workplace Well-being wasn't the 'right' service in the end, but I didn't know what I was supposed to be looking for- Headway would have done.)

"Take some paracetamol" is all well and good for the occasional headache, but your brain has been physically injured, you'll have that headache for a while, as the brain repairs, and as some stimulus are likely to overload your senses for a time. (I'm still using paracetamol, and all the medics floating in my orbit are getting concerned about the potential for liver damage, BECAUSE I didn't get the right intervention in the first place, so tried to manage on my own. Nearly 4 years since my haemorrhage, and I quite possibly have a larger stockpile of painkillers than the NHS *joke*)

Don't rush back to work, your employer's liability insurance will be invalidated if they knowingly return you to a job that they're aware you're not capable of just now, it may be that there are other roles you can be phased back into slowly, in the hope of a gradual re-build to suit what you can do now. (Voice of experience, I was back at my desk 7 weeks after my SAH, this is a bit 'Do as I say, not as I did.')

It's a long road, you probably need re-referring to Neurology regarding the on-going pain, and possibly other departments or organisations regarding your return to work. The catch-22 is that your brain is still healing, so you might well get a 'wait and see' response, my headaches did diminish somewhat over time, so I waited for them to go away completely... they didn't in my case. For now, the headaches are having an impact on your life, so they ought to be addressed, rather than dismissed, you might well have to be quite insistent about getting the referrals you need, Headway will be able to guide you.

Best of luck with it all.

[SAH-survivor in reply to Gaia_rising]

Hi

I was interested in your recovery seeing as it has been 4 years. Were you able to work again and how are headaches and fatigue 4 years later? I have a highly stressful job and went back only part time after 12 weeks but do struggle some days and wish I could give up.

[Gaia_rising in reply to SAH-survivor]

Hello SAH-survivor and sorry for the delayed response, I've been out at a medical appointment most of the day.

I did work, but I didn't manage myself very well, or tell my 'managers' how much I was struggling. (Complicated political nonsense, there were re-structures, and I was determined to prove myself capable... it's a character flaw/trait in me.) My discharge after the SAH was a mess, and I was convinced I'd just 'get better in time', so accepted the flannel from my GP about 'wait and see', and from the Consultant about 'that might improve over time'... There have been improvements, but in the way I work around my deficits, rather than in the deficits themselves, I was very bull-headed and resistant, so when medics told me to 'go away and get on with it, you lived, some people do not', I took it as a challenge. My bad.

My job was complex and high-end, and actually life-or-death in some cases, I turned up for work every day, with my boots on the correct feet, and didn't do anything atrocious, so everyone else assumed I was 'all better'. My fault. I'd started back mornings-only, because I'm more lucid and coherent in the morning, but I was working from home in the afternoons, my hours had changed, my workload hadn't. About 12 weeks post-surgery I was back full-time, because I knew other people wouldn't work to my standards. That didn't work, because the boy from HR was scared of me, so didn't contradict me on my assumed capabilities.

I have daily fatigue and headaches, the headache is a constant background, all the time dull-and-low-and-not-quite-right, occasionally peaking into excruciating pain and functional blindness. The fatigue just 'is' part of my life now, I start to shut-down in the early evening, and you get no sense at all out of me after 6pm. (I'm 'staying up late' due to the hyper-alert for the medical thing today, I work around it.)

We're all going to adapt/respond differently, depending on the areas of our brains that sustained damage, and who/what we were before. Please feel free to message me privately, I know some others on this forum struggle with long blocks of text, and I'm a windbag.

[bexx87]

Hi and welcome

Long story short: I had to forcefully in a unprofessional way get my manager put Infront of HR and put my job at risk in the process and get occ health to write to HR to make him understand the impact of the injury I had 18 years ago is still having on me and what would happen if he tried to put me though the dismal process (I would have grounds to sue for unfair dismissal due to my medication side effects cause my "poor performance" which drs where trying to figure out what was happening to cause this and still looking into it after) I was put Infront of several "junior" gps before talking to the head gp who said it could be my medication and I was immediately escalated (I still had to wait but no more jumping through hoops and I still took myself off the meds which when my appointment 8 months later came through the specialist tried to put me back on and thankfully when I poiley declined they agreed and put me on new meds and I'm still waiting for my follow up appointment but they have no neuropsychologists to run clinic) and now my manager is willing to understand mental health and specifically brain injury so if you are willing to fight tooth and nail miracles can happen if you talk to the right people but you have to put a lot at stake (and no one gets easily booted out of local government without questioning it)

[bexx87 in reply to bexx87]

I am trying to edit my response to add bits I missed but im getting "server error" *snigger*

[SAH-survivor]

Hi

Firstly, can you not ask him to refer you to a neurologist?

Secondly, surely you should be on high blood pressure medication.

I had my SAH in August and I have had to push for the medication for high BP.

My headache was so bad one day, I just ended going yo A amd E and they re scanned me. This gave me the reassurance I needed. I am atill awaiting my follow up!

[Pompom1]

Hi sorry for not replying I'm still under kings had a mri Oct still awaiting results I've not spoken to anyone from kings I've recently received a hormone blood test and thyroid been given BP tablets from doc, my employer is sympathise with me but I work in a home so the stress etc and shifts don't suit it still new to me this it's was on August this yr this happened, The headaches knock me for 6 some days and I forget stuff this I'm sure wasn't explained to me.

[Madiepetsana]

My SAH happened eighteen years ago. What your doctor suggested is surely a quick fix that does not help at all as time goes. High blood pressure is the main culprit of SAHs and we need to know which type of blood pressure we suffer from. Mine is a potassium dificiency and try by all means to supplement by eating the right foods and taking my chronic pills. Guess we should also try and relearn our bodies after the trauma we go through in the process. I only realized that last week that eighteen years have passed since my SAH as never had it in my mind that am limited to do other things. It is now in this stage that I realize steadiness is a prerogative. Take good care of yourself and thumbs up for speaking out!!!!! However, get your blood pressure treatment in order.

[godstrong20]

Omg please please dont wait, go to the hospital it only has a window of 18 minutes if a subcharoid hemmorage starts to bleed before your life is ended. Please I also had one on 08/07/2018 and I was.lucky to have my husband home at that moment and the ambulance was at my house in 7 minutes o was taken to hospital within 5 minutes leaving 6 mins before they could open me up and release pressure. I was in ICU FOR 4 weeks and 3 weeks in stroke unit and came out on rehab therapy for 5 weeks. Please there is no way your pressure should be that high, that a call for 911 they have to give you medicine to being it down. High blood pressure is one of the things that triggers hemmorage. Wanted to ask when they took you to the hospital for the hemmorage what did they do???? And what meds are you on??

[Pompom1 in reply to godstrong20]

Hello im still under care of kings I wouldn't be able to say what I had in hospital but on paracetamol and candessartan for bp now but only 4 mg iv also had a hormone blood test just awaiting results for that every day headaches when I awake and durning the day and constant tierd ness but wen I lay down to try and sleep wide awake. It so confusing .

[godstrong20 in reply to Pompom1]

Understandable, but that is actually part of recovery, the doctors tell me that can stay for as long as even a year, a brain hemmorage us very delicate, I go thru the same when I get up I have a headache, and kinda stays around as an annoying one but I can tolerate it just a pain in my back feels like a monkey in my back that can't seem to get rid of daily, and night time I have insomnia, they given me Nortrityline an ambien which is fine but hate taking them just started with triptyline, suppose to work for depression and headaches. I feel your pain but the importance thing is were alive and doing our best, I'm still not working cause I can get my retirement and pension so I'm good.will get back to work hopefully in April if next year. One thing I suffer from a lot is Short term memory. Do you have that.

[Pompom1 in reply to godstrong20]

Extremely with memory loss and with loud noise iam due to go back to my GP nxt week my employer good but have suggested that I get laid of on medical grounds but have a job when I'm well enough at moment certainly not safe returning yet work in residential care ,, my Hubby good with looking after me and even though we laugh at silly things with memory certainly upsets me aso well, my doctor seems reluctant to giving me any sort of thing to help with sleep or headaches I check my own BP every 3 days and note it down and give to my doctor that wen I can get appointment ,,

[ErinSAH]

Hi Pompom, I am 5 years on from a subarachnoid bleed in my 20s.

My advice is in these early days, rest, rest and rest.... take things very slowly, take a trip to the shops and see how you get on, walk, go to coffee shops.

Build things back up, but be patient with yourself and your recovery. It will be a long road and you will need all the energy you have. Take little steps to build up to a few hours in work but this may take months, try not to rush back.

Best of luck xx