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My partner had his bleed on 7th Sept.  he had his operation and had 2 aneurysms coiled on the 9th.  

 

He was then discharged from hospital on 18th.

 

since being home he has suffered pains in his lower back,buttocks and legs but the paracetamol has not helped.  

 

More recently he has been using heat pads and a hot water bottle which has eased it a little but now he feels the headaches more.  

 

He can’t take Codeine as it makes him feel really ill, on top of this he now has a cold.  

 

He rarely sleeps for more than 3-4 hours in a day and only after he has taken his daily Asprin.

 

We are hoping to be able to see our GP tomorrow but does anyone know of anything more that he could be doing to help with the pain/lack of sleep ?

 

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Welcome to BTG Matt75.

 

Don't know about the lack of sleep but for the headaches it is advisable to keep well hydrated ie drink lots of water. It really does help.

 

It is very early days in your partner's recovery as recovery times can go on for months or even years depending on the individual and severity of the bleeds. Rest is important so to take naps when fatigue occurs is imperative regardless of the time of day, do not try to fight it. 

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Hello and welcome to BTG Matt, 

 

I struggled to sleep too and I couldn't take codeine either - it made my headaches worse and I was rushed back into hospital 3 weeks later with another suspected bleed - it turned out to be an analgesic headache brought on by the codeine, so your partner is definitely not alone.

 

Sound advice from Super though - plenty of water is key to keep the brain hydrated.  The pain in the back and legs could be from the blood dissipating down the spinal column - mine took about 3 months to go.  Definitely take your partner to the GP for advice but maybe see if you can also contact their Neuro team for their advice and knowledge would be more indepth.

 

As for sleep, yes, let your partner sleep when they need to sleep whatever the time - it should eventually regulate itself.

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Thank you.

Im so glad I found this forum.  

I set it up for my partner Matt so when he is ready he will be able to read through and possibly  communicate with others who have gone through what he has.  I didn’t realise It would also be such a help to me.

has given me a better understanding of something I know nothing about and reading others comments has helped so much.

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Hi there. Glad forum is helping bring you some peace of mind. The first weeks and month post a bleed are incredibly difficult and unsettling for both the patient and the partners who have to suffer and witness our discomfort and our lack of escape from the pain.

 

the best way I can remember the early months is that it felt that every rhythm, every circuit seemed broken, sleep was elusive, Pain was constant companion and  I felt alien to myself and also very broken. It gets better but in slow incremental steps.

 

first thing if he has a cold make sure he’s having lots of fluids and additionally I found anything that had a medical nasal decongestant was awful for me so just something like vicks menthol rub and natural remedy like lemon and honey worked best with my brain...(that hasn’t changed although now I can tolerate a drop of whisky too!)

 

his brain has been literally whacked and assaulted,  first by blood and then next by surgery, his minerals will be out of whack and as the other BTGers share he will still be dispersing the blood from his Cerebral spinal fluid and as that absorbs it aggravates cos its where it shouldn’t be And that hurts like ****.

 

He needs to know that every cognitive effort will drain him and that he needs to be very choosy about what and how much he does, and if he does anything then rest, total rest, no cognitive demand. He need  to find things that help him relax and turn off the senses, turn down the high alert state his brain is in,  so establish a great going to bed routine. No screens, low lighting, warm bath, hand or foot massage if he can bear it and then not beat himself up if sleep is patchy and all over the place . If he wakes just know the brain is trying to find its way back to new operating rythem, so fine gentle light on , listen to some music and then wait to feel tired again. Think jet lag, your worst ever hangover and post illness fog combined..you just have to go with it and find what makes that bearable in that moment. 

 

get your doctor To check minerals in his bloods. As we head to winter vitam d can drop but other important ones like magnesium etc can often be out of whack  post brain injury , mine were for a long time, don’t take any supplements though without advice and getting checked. Lastly eat well and more frequently than you think. Snack like it’s going out of fashion but healthy stuff. He is using masses of energy to heal. It’s invisble but exhausting. 

 

Go steady both, no sprinting required. BTG folk are here if you have questions as we have walked the path. 

 

 

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Hello Matt

I had my SAH with coils and EVD 9 weeks ago and I still have pain in the back and neck, which spreads to my chest and makes walking uncomfortable. I too use hot pads but be careful with them as I used them so much I ended up with blisters. I’ve been told to take it easy and to rest as often as my body tells me. The initial fatigue is unbelievable but it does slowly get better. It’s nowhere near as bad now for me as it was in the first month but I still try to have a nap in the middle of the day. Keep hydrated. It really does make a difference. 

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Hi there

 

warm welcome.

Yep keep well hydrated doesn't make headaches go but it does help.

Good replies (as ever) 

 

My lower back pain was due to 5 spinal fluid extractions but I was told that when the blood goes back through the body it can cause pain not sure if that's right so DO ask the GP and if your at all worried call the Neuro Team.

 

Its early days...  You take care of yourself because without the people who care for us 'where-would-we-be'  

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Hi there,

I do not remember much so a lot of help I am. But singing happy songs helped me but didn't do to much for my hubby and Daughter !!

 

But this was after I had shunt fitted for hydrocephalus ..before that it was all a dream.

 

Keep him Happy and cheerful it is early Days yet, we are in it for the long haul but he will get better if worried see Doc. Oh you are xx.  

 

Keep water by him as others have said. Keep him away from professional misery's, sounds rude but I didnt want to hear sob stories when getting well, as my brain hurt !!! Shh one was my Sister !!!

 

OT's because I played them up told my husband, I will never be as I was, and to put me in a home.  "Hubs said We will take her home" might have told them I don't like them ?? Finished up with a balloon to hit !!  Bet I was a moo.  On here is what happens to your brain when you have a bleed it is called "A Letter from your Brain", but I can never remember where it is in here ...it explains what his brain has been through  Help someone  xxxx  thought it was under Inspirations ...Keep him calm, happy and watered  and he should with your help get better.  I knew I was getting better hubs moaned at me  !!!! lol   Good luck the pair of you xxxx  This is a good site to come to as you know you are not alone in this 

 

https://web.behindthegray.net/topic/2113-a-letter-from-your-brain-by-stephanie-st-claire-©1996/

 

 

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