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Dear All

 

I had my subarachnoid haemorrhage about six months ago.  A lot of the difficulties I had initially are slowly disappearing, and I now feel ready to return to work.  (I'm a primary school teacher).  But... I still get headaches.  Sometimes just slight headaches.  Sometimes bad enough for me to give up on the day and just go to bed!  No where near as bad as that thunderclap headache I had when my aneurysms ruptured though.

 

So my question is this:  Does anyone else still experience headaches, and if not, at what stage did they cease?  I've got my first angiogram scheduled for next week and I am nervous as hell!  

 

Any replies will be greatly appreciated.

 

Claudette

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Hi Claudette,

 

I do not remember much of the first year, but I awoke a year later and did get the odd headaches and that could be as I had a shunt put in.

 

My head felt prickly and itchy sometimes so I washed hair in salt water as I thought it would also help scars to heal and it helped some.

 

I took paracetamol 's and I still cannot take too much shouting, which in my family is a natural thing lol.

 

Good luck and they do get better when not over stressed so take it slow at first and hope the children will behave for you.

Also my surgeon ​said "No Stress"  so I sing when feel stressed  bad for the family but it helps me xx

 

Good luck

Win xxxx

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Hi Claudette, I was told headaches can last for a while after SAH,

 

At the six month mark I was still having them and I was told it was

still early in my recovery, it does get better with time.

 

What I will say is if you are at all concerned, visit your doctor.

 

I`m 20 months down the line and I still get headaches, not severe

like when SAH happened, they have eased in their intensity and I

am learning to cope with them more now than I did then.

 

I know a lot of the members on BTG helped to put my mind at rest

in the early stages of my recovery as I was very worried about headaches,

simply because before I had SAH I`d never suffered with headaches.

 

Hope this helps put your mind at rest, like I said check with doctor if you are

really concerned.

 

Hope things improve for you soon,

Love

Michelle xx

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Claudette, just another note,

 

if you are worried about Angiogram, that could be a contributing factor.

 

Stress does tend to be one of the things that can cause a headache

to be worse.

 

Win will tell you no stress it`s not good for us.

 

Love

Michelle x

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Hey there

 

I still have headaches nearly 10 years later but they're not all to do with SAH. You're early in your recovery and hopefully they will ease with time but we're all different.  You might just be having an every day headache but because you've had an SAH putting it down to that - I know I did.  Try to relax as much as possible and make sure you're drinking plenty of water. 

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Headaches are, I think, a lasting hangover from SAH. I never had headaches before my bleed but now am more aware when I do have one. Strangely on my 1st anniversary I experienced a really bad headache which I managed to control with Paracetamol and Ibuprofen. My husband suggested that it was psychosomatic as I knew it was my anniversary, maybe it was, but it sure enough felt real to me.

As Sami says, drink lots of water and don't worry about that angiogram, you'll be fine!

 

Clare xx

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Hi Claudette,

I think we all have head aches from time to time, but as others have said, we are more aware of them. If you've had the SAH, you will have some degree of physical damage to your brain. I find the side of my head that has the damage is more sensitive. I easily get headache from fatigue, stress and tension, dehydration, too much caffeine, irritating smells. Usually they are easily managed with rest and ibuprofen, but if yours are a problem, let your dr know. And yes, the thought of having an angiogram is frightening, but it is your new preventative medicine, making sure everything is coming along as it should.

Hope you feel better!

Colleen

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Hi All

 

Thank you so much for your kind replies!  Headaches seem to be par of the course for us post SAHs.  Horrible to think that I'll probably have this for the rest of my life, but also good to hear that I'm not the only one and that it's nothing really worth worrying about.  I smiled when I read the comments about drinking enough water.  That was the bane of my life when I was still in hospital.  Didn't realise that that too is going to be a lifelong task.  I thought I was drinking enough, but in retrospect, probably not.  So I will definitely up my water intake.

 

I also still suffer a bit from insomnia.  It's common for me to wake up numerous times in the night, so perhaps the broken sleep is also playing a part.  I still drink coffee (1-2 cups a day), which is probably a no-no, and I do have quite a lot of stress.  Just listing it all is giving me a headache!  So, I'm going to increase the amount of water I drink, lay off the coffee for a while, and focus more on my de-stressing.  I already do yoga, swimming, pilates and attend sessions at my local gym run by a Neuro team, but maybe it's time I start singing!

 

Thank you all again for your support.  I'll let you know how I get on with the angiogram.  Fingers crossed!

 

Claudette xx

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Hi claudette. I echo what everyone has said already. It will improve, you will notice changes and intensity of the headaches hopefully adjusting but also know that it's your brains way of telling you it's still doing a lot of hidden healing in there. And don't be a martyr to them, take the tablets when you need them, that's one thing I learnt from the Pain Management team, get in front of the pain to let the healing happen ;)

The exercise is a really good thing ( I'm jealous of your Neuro team gym sessions, any tips? ) but maybe add a few more 'quiet' times in as well for your brain to just sit a while esoecially afterwards, also I switched to decaf coffee, so I can still enjoy the taste just without the 'whoosh' !

The angio and going back to work will all play on your mind so try to be kind to yourself and know that it's normal to get worried about these milestones when they approach, they will make you understandably nervous or on edge, thinking of all the 'what ifs' and that's ok, but then just like you have with all the other things you will get past it and it will be history. Things are different now to plan maybe but that's ok.

Take care now

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Apparently it's been proven that singing not only helps the brain repair and improve memory but it also reduces stress as you'r tricking your brain into believing that you're happy therefore reducing the effects of stress - not such a bad idea Winnie Pooh xx

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Hi Claudette, I'm one year out and I still get some form a headache every day, some days like today I hardly notice it others likely Friday I can't ignore it. As a lot of folks have stated, keeping really hydrated helps, some people find that changes in air pressure can cause the headaches to get worse. For me two things will definitely make them worse, one being tired / fatigued (either from bad sleep or doing too much) and second stress (such as going for a scan) will really set it off. 

 

They have got better over time, and if I behave myself don't get too carried away doing too much, and listen to my body when to take a break the worse excesses of headaches I can seem to avoid 

 

I was on three doses of ibuprofen and four dose of paracetamol a day for the first three months post SAH till the doctor found out and asked whether I was getting acid heartburn (Ibiprofen really isn't great on your digestive system long term), I can manage it with paracetamol but there are other things good for neuro pain that you can use long term that are more gentle on your system if you need to. As someone said above, don't martyr to it, see a chromic pain specialist if its really doing you in. 

 

My secret is avoid the stress, drink water and get out walking and get plenty of fresh air, seems to work most of the time! Good luck.

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I've been so eager to get things back to 'normal' that I seem to have pushed myself too far.  My Clinical Psychologist also feels that I'm doing too much so I am going to ease up a bit and do a little less. It's been good to get out of the house though.  Exercising and meeting people has been helping to lift my mood, as well as get me more active.    The local leisure centre I attend in Southwark (South East London) do sessions by the Community Neuro Rehabilitation Team based at St Thomas' Hospital. They offer a 6-12 week programme for people in Southwark and Lambeth with neurological conditions, at a discounted rate, and we get to use the gym facilities under the supervision of the community neuro physiotherapist and assistant.  I love it, but It's such a shame, that I've only just discovered it, 6 months after my haemorrhage.

 

There seems to be so much on offer in my area for people with brain injuries, but you need a degree just to work out where they all are!  The Neuro Gym  is great as I didn't have the confidence to use the gym by myself before.  It makes such a difference knowing that there is someone there watching over you; someone who knows what they're doing! I've only just started, Daffodil, so no real tips to offer, I'm afraid.  The main thing I'd say is to pace yourself and build up slowly.  My machine of preference is the treadmill!

 

Thanks for the advice on seeing a chronic pain specialist, Greg.  I had no idea they existed, so I will definitely talk to my Neuro nurse tomorrow. 

 

xx

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Hi Claudette,

 

I am one year out and although I do get headaches they are not a constant feature in my life. I tend to find that I get them if I have done too much or, as others have said on here, in times of stress. They are different to the headaches I would get before my SAH as I tend to find I set them around my head wounds (I had an EVD and then a shunt fitted) or at the base of my skull where I know the blood gathered.

 

My occupational therapist has spent a while working with me to recognise signs of fatigue and respond accordingly to them. She said that the headaches are around an amber on my traffic light system. If I find I am doing too much I try and take a complete break and relax in order to ease the headaches. Not always possible, I know, but I find it can help, especially with my return to work.

 

Good luck with your return to work - I am also a teacher, but in a secondary school. I had my SAH last January and started to go into work from September. Prior to that I had spent a few months in rehab working with an OT to overcome my difficulties and prepare for the return to work. 

 

After teaching a lesson for my OT and line manager in September to demonstrate that I was still capable of teaching I spent a term going into work doing non-teaching work in order to build up my stamina and get used to being back in the work place (I found that a school is not the nicest environment post-SAH, although it has got much easier over time).

 

I started my phased return in January and am currently going in on 3 days and teaching 9 periods. I am on the phased return until July and thus far my school have been very accommodating. I am still attending rehab on my days off, which has been useful.

 

Good luck with everything.

Gemma x

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Gemma, that sounds great.  Your school seem to be supporting you well.  Mine too.  My Head Teacher and HR came round recently to see how I'm getting on and to see what support they could offer.  I'm aiming on returning to work after the Easter holidays, and a phased return has been suggested for me too.  I am nervous about the return though.  

 

At the beginning of the last term of the last academic year, I was promoted to be the school's SEN Co-Ordinator (SENCO).  As the previous SENCO had been asked to leave, I was kind of thrown in at the deep-end.  There was a lot of outstanding work to do, a new SEN framework to learn, and no one to do a proper handover. I also have to do the SENCO course (a master's degree). As you can imagine, I was stressed to the hilt!  So it's not really a surprise that my brain had had enough and just said "no!"

 

When I return to work, I'm going to be returning to that job, and although I love it, and want to be able to do it, I'm not sure I'm going to be able to cope.  My Clinical Psychologist has been brilliant and is helping to prepare me for my return, and I'm sure once I start, it won't be as bad as I've been envisaging.  But I have a very good imagination and the thought of returning to a school with 100s of screaming children and back to back meetings fills me with dread!  I'm going to give it a good try though!  

 

Thank you for your advice.  I hope your return to work continues to go well.

 

x

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You know what kids are like they will be happy to see you are back xx  Both of you xx

 

Well I was with the teachers who I liked.  So Good luck in all you do Claudette and you also Gemma as good Teachers you remember all your life.  

 

You can both do it I feel it in my bones,  If I could lose weight off them ha xx

 

Win xxxx

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Hi Claudette,

 

Yes returning to the school environment is tough, but I am sure you will do it. It does get much easier over time and the phased return allows you that time off to recover before going in again.

 

I also have some additional responsibilities - I am a deputy Head of Year and was in charge of Gifted and Talented. Going back to work I decided to drop the G&T right away as I wanted to concentrate on getting back to the teaching first of all and didn't want to go back to doing the amount of work I did beforehand. I am still doing the deputy HoY and for me it has been good to spend some time doing some admin work out of the classroom. In the long term I think I would like to do a mix of teaching and some other tasks too and my school is happy to support me in this.

 

Being a SENCO is a stressful job and involves a lot of different tasks - especially if you are new to it and have to set up lots of things. I think if it is something you enjoy doing then it is worth trying to get back to it. If your school are supportive hopefully you can come to a good arrangement.

 

Good luck with everything - let us know how it goes.

Gemma x

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I've been so eager to get things back to 'normal' that I seem to have pushed myself too far.  My Clinical Psychologist also feels that I'm doing too much so I am going to ease up a bit and do a little less. It's been good to get out of the house though.  Exercising and meeting people has been helping to lift my mood, as well as get me more active.    The local leisure centre I attend in Southwark (South East London) do sessions by the Community Neuro Rehabilitation Team based at St Thomas' Hospital. They offer a 6-12 week programme for people in Southwark and Lambeth with neurological conditions, at a discounted rate, and we get to use the gym facilities under the supervision of the community neuro physiotherapist and assistant.  I love it, but It's such a shame, that I've only just discovered it, 6 months after my haemorrhage.

 

There seems to be so much on offer in my area for people with brain injuries, but you need a degree just to work out where they all are!  The Neuro Gym  is great as I didn't have the confidence to use the gym by myself before.  It makes such a difference knowing that there is someone there watching over you; someone who knows what they're doing! I've only just started, Daffodil, so no real tips to offer, I'm afraid.  The main thing I'd say is to pace yourself and build up slowly.  My machine of preference is the treadmill!

 

Thanks for the advice on seeing a chronic pain specialist, Greg.  I had no idea they existed, so I will definitely talk to my Neuro nurse tomorrow. 

 

xx

 

 

Claudette, being in south London, you shouldn't be too far from one of the good national centres for chronic pain management, I think it was Guys and St Thomas' that has a good department, sure your neuro nurse will know, let us know how you get on.

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Hey there

 

I still have headaches nearly 10 years later but they're not all to do with SAH. You're early in your recovery and hopefully they will ease with time but we're all different.  You might just be having an every day headache but because you've had an SAH putting it down to that - I know I did.  Try to relax as much as possible and make sure you're drinking plenty of water.

7 years post SAH. I have dull headaches everyday. They get more intense when looking at a screen, when I am under stress and in the evening. I sing like Winn, get outside as much as possible. Even if I cannot nap, I lay down to rest my body. Helps.

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