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  1. Today
  2. subzero
    Chris ,,,,, well done four years on. It`s been great to follow your progress on BTG as you`ve tackled your life post NASAH. Getting yourself back to running, dealing with your employment and change of jobs. Being there for your two girls as they have grown and been successful with their studies.... and even sending one of them to the UK ! Take care and all the best in the years ahead. Subs
  3. jess
    Congratulations on 4 years xxx
  4. ClareM
    Congrats on your 4 year anniversary Chris. Good to see that you can still see improvements, I hope they continue. Keep on running my cross Atlantic run buddy. We are proof that you can get back and better to fitness! Clare xx
  5. LimeyBob LimeyBob joined the community
  6. V.Mama
    Hello My husband had his SAH is May 2019. Like you, this site has been my lifeline to support and information. As you have probably found, when neurosurgeons declare your loved one 'fine' it does not mean everything is good. In my view, it just means that he/she survived the bleed and is walking and talking, so their job is done. My husband still has a headache, he describes it as being 'in the background' and sometimes his head feels woolly as he calls it. He can't bend down , sneeze or squat without his headache worsening. He takes panadol and rests if the pain gets too much. If he has a particularly busy or active day he suffers the next day, and feels like his head is spinning, his headaches are worse, and he is fatigued. Regarding the sudden headache in a hot shower, my husband has not reported a problem like this. As others mentioned, there is merit in asking your wife's neurologist for an opinion, given it was a change in symptoms at 7 months. We have watched our loved ones endure the most horrendous pain and suffering, and survive, it does shake us up when our loved one experiences a worsening of symptoms, especially when it mimics the initial onset of the SAH. I hope you and your wife get some answers to ease your minds. Veronica
  7. Yesterday
  8. Chris G
    4 years ago yesterday was my NASAH. Still going strong and getting better all the time. Love my BTG family!
  9. Last week
  10. EEM EEM joined the community
  11. Sallios
    Dear Sarah Good luck with the angiogram. I hope it all goes well and doesn’t set off any auras. Sally
  12. CharlieD started following Daily headaches and weird triggers
  13. CharlieD
    HHi, I am sorry to hear your wife is still in pain. I am 18 months and have a headache every day. Sometimes they are worse, sometimes sharp and sudden, sometimes constant throb. They have changed over time and new things have started up. Having said that other things have improved so I am very lucky in many ways. I thinking finding a good neurologist is so important. I pay to go as the waiting time on NHS is so long at the clinic I was at. I intend to pay twice a year for him to review me and my meds and that gives me piece of mind as I find my GP'S do not get the extent of the headache problem or the after effects of SAH's. I do find yoga helps and breathing exercises and listening to the CALM app helps with the pain. All the best.
  14. Winb143
    Hi AH, I had headaches after I had shunt put in, before that I don't remember much. Since my pills have been changed I do get headaches every am after pills - a coincidence maybe, but nothing a paracetamol wont get rid of. I try and not take any other pills as on enough as it is. Wish you and Mrs AH all the best and hope her headaches subside, when stressed they play me up more. See doc again and let him know and it will maybe put her mind at ease and less stress for both of you. Nothing like peace of mind and knowing you are not alone in this. Good luck to the two of you.
  15. Chelle C
    Hi Sally, I too have suffered with auras, I am 5 years since my SAH and they started about 2 years ago, it really scared me when it first happened as i suffered flashing lights when my bleed happened, i was in a panic thinking it was happening again. I went to see my GP and he explained it as migraine, panic over, he didn't prescribe me with any medication and asked me to monitor how often it happened, I have only had 2 or 3 episodes, I also don't get a headache and my zig zag is very bright colours, usually lasts about 10 to 15 minutes then goes away, it still worries me when it happens but I try to stay calm in case I make it worse. I do hope you get your appointment sorted and manage to talk to someone very soon. Good luck Love Michelle xx
  16. kempse
    I also read that on Google Sally, but like you say I'm still ok and I've had literally hundreds of episodes. I'm having an angiogram on 24th October, I just hope that doesn't set them off again! Sarah
  17. Sallios
    You’re right we should all avoid Dr Google but the problem is once you’ve read it’s hard to forget it. I just hope I can get my follow up soon.
  18. Super Mario
    Sally, to be honest, Dr Google is not your best friend. The answers are not specific to you and cover a very wide range. Tempting as it may be to consult Dr Google, don't. Wait until you have a face to face consultation.
  19. SarahLS
    Hi there, I'm almost two years out from my NASAH now and I still haven't had a pain free day. Most of the time it is a dull background pain that I can tolerate but around 4-5 times a month is gets a lot worse, with a few being terrifying. Often sneezing is a trigger to increasing my pain which is an activity hard to avoid! I do find that drinking a lot of water and pacing myself helps but this has meant quite a change to how I live my life. I know we can't give advice but my story is that my neurologist is aware of my headache frequency & hasn't seemed too bothered by them so far (I have an appointment in 3 weeks for a follow up so we'll see then) and my GP has recommended soluble paracetamol as one of the most effective painkillers. Since having the bleed I've found my GP and neurology department very reassuring and if it were me with these new symptoms I'd be chasing both for new, urgent, appointments - I've learned what my new normal is and do get new variants checked out. good luck, sarah
  20. kempse
    Hi Jessica, Firstly I am so pleased to hear your daughter is doing well after her procedure, but sorry that she and you had to go through all this with her being so young, it must have been a very worrying time. I wish her all the best. As for me, I haven't had my proposed procedure, but coincidentally I was in the middle of reading your post when my husband handed me a letter which had just come through the letter box. It was a letter from the hospital with a date for my angiogram which is 24th October at 8.30 am😨. Immediately I saw it was the week after next my heart started beating extra fast! Despite having had a couple of angiograms in the past I still worry about the procedure, I even worry about sneezing or coughing during the angiogram. Perhaps they'll give me a sedative! Thanks for your offer to talk about diverters etc - I will bear this in mind. Sarah
  21. Sallios
    Dear Sarah Thanks for your reply. My experience of the auras sounds very similar to yours. Started in hospital and has continued ever since (11 weeks since SAH) getting more frequent. They start as a small flickering blob in the distance which quickly gets bigger and bigger until it covers my vision. Both eyes involved: open or closed. Zig-zag silver/black ovoid which flickers. Lasts between 20 minutes and half an hour but no headache. It is reassuring to know that someone else has the same thing and that you are still OK. Unfortunately I’ve looked this up on Google and it says that aura without headache can be a precursor to a stroke. So this is preying on my mind. Like yours my GP didn’t have much to say about it. I’m still waiting for my follow up. So pleased to hear yours are finally reducing in frequency. Thanks again. Sally
  22. jess
    Welcome xxx I am 17 years out had my rupture at 23 my headaches were horrendous still are occasionally xxx Two things worked for me I used white tiger balm on temples and behind ears at the base of skull also got a Himalayan salt lamp I have it on whenever I am in the room with it (Mine is in bedroom keep it on all night) but you can have more than one so where ever your wife sits maybe you ought to put one xxx If she experiences any new or changed pain see a Dr to get checked hope things improve soon xxx
  23. kempse
    Hi Sallios If you're in the UK you should automatically get a follow up appointment and/or a scan to see how your coils have settled in, usually between 3 and 6 months after the coiling. Can you describe these auras you are experiencing? I experienced auras immediately after my coiling which was 11 years ago. The first episode whilst still in hospital. I would describe mine as crescent shaped, silver and black zig-zag flashing lights and it would continue flickering for anything up to half an hour. Sometimes there would be one crescent, sometimes 2 or even 3 on occasions and whatever direction I looked they followed my vision so there was no escape from it. It was still there if I closed my eyes or covered one eye. I too was worried about the frequency of these episodes and not knowing what they were or what was causing them. I began recording the frequency, the length of each episode and what I'd been doing at the time - the latter didn't prove much as I even got them during the night as they woke me up. I did mention it at my first follow up appt, but they didn't appear too concerned saying it was quite common following an sah/coiling. As I was being monitored annually and I was still having these auras 2 years later, I was referred to an ophthalmologist at the hospital who confirmed it was the aura of migraine without the headache. Following correspondence to my GP I was prescribed medication and was told it wouldn't completely get rid of them, but at best would reduce the frequency by up to 50%. I'm still on this medication and apart from one episode last week I don't recall having any others this year which makes me conclude that the reduction for me must finally be nearing 100%. I hope you succeed in getting an appointment soon, Take care, Sarah
  24. Jessica started following Having to make a decision almost 11 years after aneurysm rupture
  25. Jessica
    Sarah, I so hope you are ok. I imagine you may have had your procedure. My 7 year old daughter had a giant aneurysm at the base of her vascular artery last December and they treated it successfully with coils and a diverted. Miraculously. She’s 10 months out from the procedure and so far so good. I hope all the best for you, please feel free to reach out direct if you want to talk about the diverter, or similar complex aneurysms. xo.
  26. Super Mario started following Follow up appointment and Daily headaches and weird triggers
  27. ahorton86
    Hello all, I’ve been perusing this site for a few months now and I’ve found it more useful than anything else I’ve found online. A huge thanks to all of you! My wife had her NASAH almost a year ago now and unfortunately has had a headache ever since day 1. While they have definitely calmed down since the original event, there still has not been a moment of 100% relief from headaches. She was 28 years old when her event occurred and in overall good health. She had a flowering up angiogram about 5 months post bleed and everything was fine according to the doctor. I know that no two bleeds are alike, but I’m just tying to find any advice at all, if any of you see similarities in your own stories. She has tried many medications, I won’t list them all, but I feel like she’s tried most meds minus the harder opioids and alike in fear of developing a dependency. She has also tried acupuncture, with little true success, but if anything it is relaxing for her. I think these are common for a lot of people but we are open to any other suggestions that have helped others. I am constantly reminding her to drink fluids and rest as much as she can, but she is defiantly a woman on the go go go more than she probably should be. Anyways, one weird thing we have noticed a few times now is that a shower, particularly a hotter shower, will give her a sudden, horrible headache. The first time it happened of course it was scary for her and me both, but a good night‘s sleep seemed to help it subside. It has occurred after taking her nighttime meds and before with no differences that we can tell, so even her meds don’t touch it enough to see a difference. Has anyone else had this issue? I did read that showers can cause headaches, but this only started happening maybe around 7 months out from her bleed. Maybe it just one of those weird things? Do many people have headaches this far out from their bleed 24/7? Should we be worried? I hate asking these questions, as I’m sure they have been asked many times, but I just do not know where else to turn. Any information is greatly appreciated, and again, thank you all so very much.
  28. ahorton86 ahorton86 joined the community
  29. Super Mario
    Keep pushing the admin team to keep it foremost in their minds. I took them about 6 weeks to get me an appointment. Another ploy could be for you to contact PALS at your treating hospital, they will chase it up for you and are successful.
  30. Sallios
    Thanks Super Mario. The admin team at my surgery have apparently been on the case for the last two weeks but to no avail ☹️ I’ll keep trying.
  31. Super Mario
    There should be someone at your GP's who deals with appointments. Ring them again and ask for them to chase it up. I had a similar problem and the person at the GP's who deals with the above told the department that she was putting it all on my notes and hey presto, I got an appointment for the following week. You will have to keep pushing.
  32. Colleen Lyons Colleen Lyons changed their profile photo
  33. Sallios started following Follow up appointment
  34. Sallios
    I had SAH with coiling and EVD 11 weeks ago. How long before I should get a follow up appointment? My GP says I should have one as does my contact from the Stroke Association and someone at Headway. I still have back pain although it’s not as bad as it was. What’s worrying me more and more are the auras. They are getting more frequent around 3 times a week. My GP knows about them and says to ring for a follow up hospital appointment. I keep trying but all I get is an answerphone and I leave a message but no appointment materialises. At a bit of a loss to know what else to do. It’s like a brick wall. Does/did anyone else have frequent auras ?
  35. Chris G
    Welcome. I can’t add much to the advice above. It is a roller coaster ride that takes time. Short term memory took a long time to re over for me but it continues to improve and I am almost four years out. Please be patient and expect some bumps and some gloomy days. They will pass and you are healing. Best wishes chris
  36. Mrs Mac Mrs Mac joined the community
  37. Mrs Mac
    Hi all I have not been on this site before so bear with me....I had a SAH (not sure what a NASAH is (sorry!) last September 2018. I ran the London marathon in April 2018 and the Great north run in September- 3 days before the SAH. I was back running after about 10 weeks but slowly! My rupture also happened whilst on a recovery run after the GNR. I was cautious and my family were initially very worried but I gradually built my running back up to a half marathon distance after 8 months post SAH and now I am back to producing similar times. If it helps I kept my heart rate under 140 beats initially then 150 and now just watch when it gets to 160+ and then just stop and walk a bit until it comes back down. The running, for me, was hugely beneficial psychologically particularly when I couldn’t drive as I could regain some independence. I often slept / napped afterwards though soI didn’t over do it. I found the naps became less frequent, speed improved and confidence too for me and others! I would speak to your neurosurgeon about what he thinks - mine was quite supportive due to my history. I was also in runners world as I contacted someone else who had the same thing and they got back to ultras ! I think it’s individual but hope that helps x Tbh I found it more of a challenge to get back to work!!!
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