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Nikki A

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  1. Hi Steve Thanks for the reply, it’s good to know I’m not alone in this and I feel your frustration at not knowing the cause. I now have chronic headaches on top of my regular migraines and ice pick headaches. I think mine is partially due to nerve damage to my right eye. Ever since the bleed I’ve have photosensitivity there. Im now on slow release propranolol, so I’m hoping this makes a difference. There is another drug they can try if it doesn’t, but I’m now at the point I think I would worry if I didn’t have a headache, it’s just constant, and although medications make it bearable I’m never pain free. I would love some answers but neurologist seems happy for my gp to deal. If anyone has any hints on coping with this I would love to hear from them. Hopefully we’ll get answers
  2. Been a while since I posted. I’ve accepted headaches as part and parcel, a result of my bleed. I was getting migraines 3-4 times a week. Thankfully my doctor as me on medication which reduces them. I have constant pain in my right eye and temple following my bleed which I’ve also learned to live with. Recently over these last few months and bearing on mind and I’m now 20 months post bleed, I get ice pick headaches. These are horrendous and although the pain generally lasts a few seconds, they come in waves over a few days. I have been getting them more and more, I’m exhausted. I keep active though, it helps. Wondered if anyone else got these headaches and how they coped.
  3. Would you not be entitled to PIP? Personal Independence Payment, it’s not means tested like other benefits, and doesn’t depend on national insurance contributions, like some forms of ESA. Worth a shot? I really hope things look up for you, I know what it’s like when life keeps kicking you down. But there is always a light st the end of the tunnel, as bad as things maybe just now, they will get better. My thoughts are with you.
  4. It’s been one of those weeks where the headaches have been particularly bad and left me exhausted. I sometimes think I went back to work too soon, I’m now 5 months post bleed. Been back to work coming up for 3 months. I work shifts so am missing the routine I had when I was off, thought I was having another bleed today as the intense pain spread up from the back of my head. It’s left me feeling very irritable and quite honestly just wanting to barricade myself in from everyone. Feeling guilty about this, my kids wanting to tell me about their day and I’m just not wanting to communicate. I keep telling myself, I’m not dead, I’m lucky and others have it much worse. I had my follow up with Neurosurgery which was horrible. The doctor was so condescending, I left feeling very downhearted. I see a neurologist in 2 weeks, hopefully that will be better and maybe they can ease the headaches. Sorry to moan, I know we are all suffering, but it feels better to offload to people who know what this is like.
  5. Hi Matt, my sympathies to both you and your wife, sounds like you are having a horrendous time. Bleeds are horrible, the brain is the communication centre for our entire bodies, all messages sent arrive there are processed and messages are sent back. The bleed can affect the neurones and it’s my understanding this really messes up the messages. I get eye pain because those are nerves that were irritated for me. I was on amitrypoline which helped a bit, but my neurologist has taken me off that and I’m now back to horrendously bad headaches and pain in my eye. My neurologist isn’t the most sympathetic of people and I have been told to try and manage with codiene and paracetamol. Keep on at them, eventually they will listen and if needs be go to the emergency room, no one should have to suffer to that extent. I wish you well and hope things get better soon. Nikki
  6. Being a single mum, working full time and recovering from a SAH, I’m fully aware of overdoing it and the effect this has on not just your body but mental state. If he can tell him he needs to slow down, he will only do himself more harm both physically and mentally. It’s not admitting defeat, which I felt for a while, you need to listen to your body. Hope he listens and things get better soon.
  7. Hi Ian, just had my follow up appointment today. I too had my bleed in January and there was no apparent cause for mine either. I’m not in a high risk group, don’t smoke or drink much and I have low blood pressure. I had flu before mine which went into my chest. I was coughing loads and then just this feeling my skull was going to explode. I count myself lucky though, it could have been so much worse. My doctor was dismissive of my worries, but MRI and Angiogram showed no abnormalities. I take comfort for that, sometimes things happen which we can’t explain, but we are here. Not knowing what’s normal and when we can expect normal is horrible, but this site shows you, you aren’t alone and there are people here who know what you’ve gone through. The best advice I’ve gotten is to listen to your body, put yourself first and rest. Take care Ian Nikki
  8. Hey Stephen Hope you are feeling better and have managed to see the doctor. Listen to what people are saying here, your brain has been through a lot, the blood irritates the neurones it leaks around and depending where these transmit messages can cause a variety of symptoms. For me the bleed irritated neurones to my eye, I have constant pain but I’m told it will go with time. I really hope you get sorted, as others have suggested peeing a lot could be symptomatic of something else. Best to get it checked. Best of luck to you. Nikki
  9. 7 weeks post bleed now. I’m pleased to say I’m having more good days than bad now, well st least days when I have energy. The pain in right temple is constant and spreads round the eye socket, like someone is try to bore into my head. It fades with paracetamol and codiene but never goes. Also have tension headaches. Feeling pressured I may need to return to work soon, as I’m now on half pay. With it being just me and my three girls, finances may dictate my return to work, even if I’m not ready. Speech also continues to be an issue, the stuttering is frustrating but I have now been referred for speech therapy by my GP. My life feels in limbo just now, will have days where I’m ok and coping then I crash, with no energy. I’m unable to drive yet, so walking a lot which I like, but used to take my girls out to forests and beaches and now we are stuck. Hopefully I will be able to drive again soon, just waiting for the DVLA to clear me. Well that’s my whinge over, hope everyone else is recovering well. My thoughts are with anyone who’s gone through this.
  10. I’m only 5 weeks past my bleed, but headaches are constant, irs like someone’s constantly trying to bore into my right temple and my eye is affected too. It doesn’t open all the way and still bothered by light. Recovery is frustrating, I have a developed a stutter since my bleed and often struggle to get out a sentence. It’s worse when I do too much. Seeing as I used to teach, not much hope of going back to that just now. But I’m thankful I’m alive for my 3 girls. I get by, thinking others have it worse and I should be thankful mine wasn’t worse. Although some days, I do think why me. This site has been great. The advice and shared experiences assured me none of us are alone, and here people understand what you are gonna no through. You aren’t alone and I do hope you feel better soon.
  11. I had my bleed 4 weeks ago, I’ve had a headache ever since. Recently got sinusitis, which has floored me, the headaches are worse and I’m more exhausted. I had to have another scan just to rule or fluid building round the brain but I’m fine. It’s worrying and frustrating, just going to take time.
  12. I'm only just 2 weeks past my SAH, but finding it hard to concentrate. I struggle to find words and am finding I now stutter a bit. My bleed was relatively small and I was very lucky. I have what can only be described as a constant ache burning sensation over one side of my head. I'm hoping it will resolve in time but can certainly sympathise with you. Hope you get better soon.
  13. Exhausted today, first day I walked my little girl to school and my sister in law took me shopping for a few things . Felt very strange and grey in the shop, glad to get home and lie down. Still not had a conversation with my family yet, dropped hints I'm struggling a little, my mums response is that the house will still be there and I should rest. Thing is yes it will be, but if I don't keep on top of it, there is no chance I will cope when I am capable. So I'm doing little bits each day, then resting. It's hard. Been getting flashbacks to when it happened now too, it's all a bit traumatic and wearing me down.
  14. Thanks for all the advice, I think I do need to sit down with my family and try to explain things. I'm not good at asking for help, I hate putting others out. But you guys are right, I'm exhausted after stupid small tasks, I need help and know this. Some really helpful comments here, I very grateful to you all. Can i just ask whilst I'm here, is tinnitus normal after this? Had a ringing in my ear on for 3 days now. Thanks Nikki
  15. Hi so I suffered a minor bleed on my brain last Thursday, and by all accounts have been very lucky. I've never experienced pain like that or a longing for life to stop just to stop the pain. I spent 4 days in hospital including my birthday, and am now out. I got home Monday evening, I'm a single mum with 3 girls, ages 13, 12 and 9. I'm so scared on how I'm coping, I make their breakfasts and I'm exhausted, I have so much housework to do, as I had flu before this. My parents have been helping with the girls but now I'm home, pretty much been left to it. Piles of washing, hoovering and 4 pets to look after too. My ex husband who I do get on with, wasn't there for my girls, he did message them but wasn't there. I feel utterly lost just now. I still have pounding headaches which get worse when I try to do things, simple tasks exhaust me, just hoping I get better soon.
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