I had a SPONTANEOUS SAH at the beginning of June, and have just had another CT scan as the headaches and photophobia are becoming extrememly difficult to live with. Along with the thoughts im having in my head, I feel suicidal.
Ive been told I need to see an eye specialist as the heamorrage may have damaged behind my eyes.
Everyday, I lie here with the curtains closed, sunglasses on and a severe headache.
It was a weight off my shoulders knowing that the SAH wasnt returning, as I thought it was, but has anyone else suffered with this kind of photophobia for so long.
Ive tried so many things to keep positive since my SAH , but im starting to wonder if this is going to last forever.
Please, can anyone help me and give me reassurance that THIS ISNT FOR THE REST OF MY LIFE?
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DyansJourney
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So sorry to hear you're struggling with pain Dyan. Severe headache is a normal consequence of brain injury and the medical or surgical intervention. My earliest memory, around the 3-4 week point, is of that awful pain.
Can you tell us what medications you're having at present ? I ask as, after weeks of intravenous pain meds and no relief, the meds were stopped and the headaches eased massively. Medication overuse became a talking point soon after the new millennium.
Do you have family around you Dyan ? And is your GP involved in your care ? Sorry for all the questions m'love, but how long have you been home ? Aftercare is notoriously scarce after discharge from hospital. Hope to see you again soon....
hi, cat3, thanks for getting back to me. I was fine while on medications in the hospital but the doctor wouldnt prescribe them when I came out, until a month in , then as soon as I was prescribed oxinorm again, the pain and photophobia were much less!
They allowed me to be on it for 2 weeks and then started giving me other medication in dribs and drabs , here and there, and all of my friends and family were so concerned , as no doctor had even been out to take my bloods, until they really complained that it was neglect.
Im currently on codeine (which i have been since hospital)and naproxen (starting last week), and i buy paracetamol for my pain, but nothing seems to work.... Even tho im prescribed them 4 times a day I only take them twice now, as I thought the same thing as u and codeine really doesnt agree with me....
Up until my CT scan last week, I was only actually prescribed codiene..... Ive been stopped the oxynorm for a month and a half now, and at first I thought it might be withdrawal, as they didnt do it properly, they said take one dose 2morra and one the next day(apparently that was me weaned off) But the photophobia became unbearable along with the headaches and short term memory loss.
I have a 2 year grandson who was my life, who ive only been able to see 3 times in the last3 months and its killing me. I just want it to stop
Ive had loads of trouble with my doctors and they havent been helpful at all, and now, since last week, the consultant put me on naproxen too. But whether I take It or not, my head, memory and light sensitivity seem to become worse.
He did say I need to see an eye specialist, incase of damage, but that doesnt take my current problems away
OK Dyan, thanks for those details. You really do need someone with a bit more 'clout' on your side don't you.
We had a stressful period 4years ago when my son's partner developed gynaecological issues causing severe pain & immobility. Her doctor completely misdiagnosed her condition for over a year 'til she was eventually referred to a consultant gynaecologist. She was still waiting for a slot a year later until my son contacted their local MP. Within two weeks she had long awaited surgery and hasn't looked back. Maybe worth a try ?
I wonder whether you've spoken to the Headway team for support and advice. If not, maybe contact the helpline on freephone 0808 800 2244 ; they've helped so many folk over the years.
It's one of those times when I wish I had a magic wand m'love 'cause you'd be high on my to-do list. I hope you're high on the list for an eye specialist ; eye issues can cause persistent headaches.
I do feel for you Dyan. Please stay in touch..... Xx
thank u darling, ive had lots of problems like that over the years too, I was misdiagnosed and ended up nearly losing my life in 2012 as i had a 15 inch fibroid sucking the life out of me , for 3 years I was fobbed off by doctors saying I was exaggerating about blood loss. And that i was eating too much , because of the weight gain....I ended up with a full hysterctomy because in those 3 years it had attatched itself to my pancreas, stomach and liver .the operation took 7 hours and I had to be transfused 4 pints of blood, the doctors said it was a miracle I had survived on so little blood in my system, just everything goes wrong in my life cat3, and thats just the very bare basics of what ive gone through. My body and mind feel like giving up, as I just dont see any point. To top it all off, my money didnt go into my bank this morning! How can I stay positive wen im constantly being brought back down? But Thanks for ur kind words 💖
Has anyone ever mentioned Amitriptyline for both headaches and mood ? And SSRIs can aid recovery after all types of brain injury as well as treating PTSD & clinical depression.
My kids & I have been through the wringer with my divorce, meningitis, breast cancer, and other health emergencies ; life can feel utterly hopeless and isolating for many of us. But SSRIs gave me hope and got me through the SAH trauma ! ...Just a thought m'love. 🤔
No cat3 no one has mentioned this to me, so thank u for the support, it may be worth mentioning. Really appreciate it, my heads getting weary now so I best go, ill be in touch soon xxx thanks again 🙂
Hi D, I don't have a SAH, but did have constant headache for ages - what actually shifted it wasn't the standard migraine meds the neurologist tried me on - there are several, all for me having unacceptable side effects, tolerance varies greatly from person to person - but finally, the SNRI Duloxetine which is given for fibromyalgia pain was utterly brilliant for me, and my headaches really improved on it. Do ring Headway as Cat suggests - there are lots of options out there.
thank u, I have a lady from headway ringing me 2morrow, I think! Hahaha, I actually cant remember, im gunna have to look in my book now to check!!(ocds on the warpath again haha!)
Ive actually had quite a good day today for the first time in many weeks , but my god, this tinnitus is getting right on my nerves 2nite , its extra loud and all kind of different frequencies! Ive had to turn me telly right up!
Wishing u well and so glad that 7 finally have ur pain under control now, I hope it stays that way for u !
thank u pinkvision, I really wish I could afford private treatment, but unfortunately I cant. I just said to my mam last week that I wish I had the money for us ALL to go private, as the NHS are just so stretched at the minute, that they cant seem to kerp up with patients needs at all... Unfortunately this isn't an option for me .
Unfortunately the NHS does not provide this kind of treatment/therapy, private is the only option. I just stuck it all on a credit card and the CAB fixed it with the credit card company to pay back small amounts until I can afford to pay it back. The treatment was life changing.
They carry out the same tests as you get in an opticians, it's all ocular, about the eyes, they don't cover the visual processing in the brain. For that you need to see an optometrist.
oh god, I just feel like giving up , thanks for the info , I cant stand feeling like this and having all these problems for much longer, I feel like tossing in the towel, theres just no quality of life with this, is there?
It may be an idea to stop for a while and look at the reality of your situation and find some kind of acceptance. Reach out to people who understand, the headway helpline will help, also the stroke association and mind. Once you get all the information together, absorb it and work out a strategy to get through it. I strongly suggest you keep asking questions to others in the same situation or have been through it on this site. Most people no matter what the brain injury type have gone through what you are experiencing right now and have come out the other side.
Hi Dyan, many people experience photophobia following a brain injury, it can be severe for a prolonged period, but does largely resolve as the brain recovers. We tend to underestimate how long recovery takes. This is unlikely to be a life long sentence.
With regards to pain relief, codeine doesn't agree with many people, as any opiate, it is great for short periods, but the side effects from prolonged use often are worse than the pain they are prescribed for.
Naproxen is generally effective but must be taken with food and it maybe advisable to have something like omeprizole prescribed to protect the stomach. This is safe to take with paracetamol. Paracetamol to a maximum dose of 1g four times in 24hrs (not to take at less than six hours between doses).
I should have said welcome to the forum. There is a wealth of experience here, but we all talk from our own experience, so it is best to talk to your GP or the hospital before trying any medication or care suggested to make sure it is correct for you.
If you haven't already, it is worth having a look at the Headway website, details are pinned to this page. They also have a helpline during office hours where you can talk to someone that can offer support, and signpost you to various professions that may help.
Keep in touch, I hope you get some relief soon, keep strong 🍀
thank u for ur support, yes ur right, I hardly take the codeine now as I find it makes my head worse, im already on omeprazole though. Its like banging my yead against a brick wall with my doctors, but im touch will a Ways for Wellness person now, who has just recieved an email from Headway and she says she will foward it to me, yo which im very grateful.
There have been multiple mix ups with everything as regards to my medication AND my recovery , and getting help with either ,has been a constant battle since leaving hospital 3 months ago.
I feel like I have someone elses brain in my head! Ive always been different, in my ways of thinking, agoraphobia, anxiety, PTSD , phone phobia, social phobia etc since a botched op on my hand, forced me to give up my tattoo studio 6 years ago. It was the only thing that seemed to keep me on track, and feel sane.
Losing that ability to draw, and trying to train my left hand to draw wasnt possible and its been a battle to even live sinve then
But my grandson came along 2 years ago and it transformed me and gave me drive to cope with all my mental illnesses ... I had to look after him for nearly a year, as my daughter had severe comications at birth , involving major surgery for her to live . I used to also have him alot wen ahe moved out as he keeps me motivated!
But changes in me physically and mentally since the SAH have made it extremely challenging, especially with this pain and photophobia, and I just feel useless.
I know its early days for me, but my brain just keeps telling me that im a burden on everyone and that they would all be better off without me, as im just another worry to them.
I just feel at a total loss, looking forward to talking to Headway on Thursday, but now the anxiety is starting to kick in about having to explain it all over again and talk on the phone. Ive asked them to text me first to prepare me on the day, but I just feel pathetic.
Ive not felt this way for years, I just dont know what to do .
Thank u for caring and thanks for welcoming me. Im waiting for an appointment for an eye specialist at the hospital, but ive also been waiting for an letter for another op as regarding my calcium levels for them to take glands out from my neck.
I feel on overload, and I just want this to stop , and feel theres only one way out....
Please don't ever think that the only way is the way out, your daughter, and grandson would miss you, and they still need you. From what you say, you have immense strength having dealt with so much over the years. There is no reason to suggest that you won't gain control of what currently feels so much of a struggle. Try not to get stressed over the phone call with Headway, they are just a new mate calling to offer you some support, you tell them as much, or as little as you like, they're not looking to catch you out, or trip you up. They're good people. You are never alone anymore, you are part of the Headway family, always, when things start to feel like too much, reach out, someone will always respond, just give us enough time. 🍀
thank you so much..... Youve got me in tears here. Knowing how to be able to express myself, is just becoming that difficult that I find myself just keeping my mouth shut because all I seem to do is moan.
People just totally forget u exsist when this happens.... My best friend who was like a sister to me , hasnt even been to see me since I got out of hospital . I keep checking up on her , not the other way round, she has a car and lives a 7 minute drive away! Its just floored me how people u thought would be there for you, arent anymore.
I dont get lonely, I have my 2 beautiful dogs, but I just feel like I must be a disappointment to everyone, even though im trying my hardest not to be.
This is the place to moan, rant, rave, we have all been there. We are our own worst critics', our brain has been hijacked and is running all kinds of rubbish, but there is still you in there, battling to be heard over the hijacker. If we shout loud enough, we will beat the hijacker. Stick with us kid, we in the battle along side you, and we never leave anyone behind x
Hi Dyan: Following an assult whih reulted in a serious brain hemorrhage, . After 10 years I still experience painful migraines. Over the years I have learned to manage much of my pain by first learnign about brain health . I read Dr David Amen and Dr. Mark Hymen. They taught me so much on nutrition and supplements for the brain. . They are not miricle workers. I do the work each day. I have learned to rest.
I still get light flashe and don't jump out of my skin when I do. Anxiety is fear. Therapy has taught me to calm down, use my breath. I am an epileptic as well. The last thing I need is to get in a frenzy. You need to find a way to relax when you are starting to have a migraine. Calmly move to the sofa, turn out the lights and breath. Dont be afraid, they pass.
In the meantime, see if your neurologist can recommend one of the new preventative monthly shots, perhaps. One may work. Remember, depression is greiving a loss. It will get easier. That knot in your chest will loosen little by little. Living with a TBI is not easy but you can own it and bring joy into your life and others. It all takes time. you are so worth it.
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