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  1. Since my SAH l thought that pushing to the limit was the way to get better. Then I watched the video flooding sensory overload and read a few other things and realised I was completely wrong. That was in November, my life is totally different now. A lot of the time the front of my brain would feel numb and I couldn’t think straight which led to numerous other problems. I realise now that I was creating problems that didn’t exist which would cause stress for weeks even months. Lockdown has helped by eliminating a lot of my triggers and I don’t push myself anymore, I’ve found I can actually do more work now. Mindfulness has also helped. lt annoys me that in all these years I couldn’t work it out myself but I suppose that’s what brain injuries do. So I’m looking forward to a much happier stress free life.
    6 points
  2. Hi everyone I hope you are all keeping well. I have a date now and am having this procedure in August so feeling nervous but also relieved. Although the nervousness is taking over at the moment! I have to go for the pre-op assessment next week so it will become very real then. They have said that it will only be a one night stay after. I’m wondering if the recovery is easier for this without the bleed this time. It certainly seems to be from what I’ve read on here. I’m just trying to hold on to what I read here that when you wake up you no longer have it hanging over you and can put it all behind you. That is what I am trying to focus on. Any other advice or experience will be gratefully received! Thanks in advance.
    5 points
  3. I just wanted to post this and share with the forum. I am 9 years on from my SAH with no evidence except from lumbar puncture. Did the 28 days hospital and released to absolutely nothing and have struggled ever since. Many odd symptoms but this constant exhaustion was seems to be a thread running through many SAH survivors. I still have to rest for several hours a day and nap for an hour. My lunch break is about two to three hours. Then by 7pm I've had it again. I can't even go out for the day as I get tired after a few hours and if I don't sleep I get dizzy and faint. Anyway for years I felt my body was fighting something rather than just getting over SAH being the whole explanation. It's taken years, tests by different specialists all coming up negative and I'd just about given up hope and just accepting my situation of what feels like an 80 year old or more. I'm now 51 and managed to find the right route to go down and have just been diagnosed with Lupus and Sjogrens Syndrome autoimmune conditions (scared and relieved about it). It was sudden very dry constantly runny eyes that got me down the right path. I'd had a very dry mouth since the SAH and an unquenchable thirst most of the time, sensitivity to light and rash when I go in the sun but no one picked those symptoms up. I don't know if the SAH sparked everything off and the menopause has exacerbated things but I wanted to put it out there that the exhaustion some may feel may point to another underlying condition which the after effects of SAH has hidden. I have medication which will helpfully ease the tiredness and a bag of other meds now to take! But I am extremely pleased that I didn't give up when GPs have written me off as a hypochondriac or just put everything down to SAH. It is becoming more known that body trauma can kick start autoimmune conditions and if you feel something isn't right don't give up. Hopefully any others who feel like me won't have to search for years to get answers. Just because you have had one rare condition doesn't mean you can't have another.
    5 points
  4. A quick update on my post about undiagnosed SAH. Finally, I found a doctor who explained what happened to me. It turned out that my MRI examinations were poorly described and the radiologist did not find any damage to the brain tissue caused by the blood pressure surge. After looking at the test, you could tell I had something called pres syndrome. He also referred me to an MRI scan with a higher magnetic field to exclude bleeding. I am much calmer that I finally found something and that God listened to my prayers. I would like to thank you again for all the kind words and advice. I will let you know after the tests if I have not had bleeding.
    5 points
  5. I don’t think I thanked everyone for there kind responses to my 1 year anniversary. I’m working on year 2 now. You are all wonderful people and I’m so happy to have found this site. Take care my SAH family ❤️❤️👋
    4 points
  6. Oh, thank you for sharing this update. So thankful you have found a doctor who listens and is willing to provide answers for you. Yes, prayers answered. I do hope this gives you the courage to press on when you face doubts and trials. And, like so many of us had to learn don’t be afraid to reach out for support. The BTG has been my lifeboat during seasons of unanswered questions and times of discouragement. Now, that you have received comfort and calm in your affliction, you will be able to offer compassion and calmness to others who are in any affliction with that same grace and understanding. I have learned that when someone has had a brain injury there will be effects of increased irritability and depression at times. There is much wisdom in calling hotlines or support persons at such times. I definitely had increased anxiety in general after my SAH and did need a prescription through the worst of it. Now, I am doing much better. Take care of yourself. Kathy (Colorado)
    4 points
  7. Thank you so much, Tina. This group means so much to me and I am sure to many others. 💗
    3 points
  8. That is great news. But I don’t think running after busses and getting pregnant is mandatory.
    3 points
  9. Hi Dawny. I certainly understand your comment “feeling nervous but also relieved” ~ and, have you in my thoughts and prayers. I try to keep myself busy on a house project or gardening so I do not perseverate about a procedure when they come up. Also, keep well hydrated. Sending hugs. ~ Kathy (Colorado)
    3 points
  10. 3 points
  11. You take care too and rest assured I will pop in every now and then to keep a history of my recovery and the long term effects. I am immensely grateful for the all the advice and support here so intend on paying it back as long as I can.
    3 points
  12. Just a quick update as there is nothing major to report. Had both my jabs (AZ), only side effect was extreme tiredness after the 2nd one for 3 days (weekend and bank holiday - damn). Other than that, and the weight gain, all much as the same as before. Noise is still an issue but it is hardly like I am going into loud echoey environments these days. Stay safe all.
    3 points
  13. Hello, it’s been a while. Hope everyone is doing well in your recovery. I know we can’t give medical advice, but I was wondering if anyone ever has numbness in their head and neck, along with a little pain sometimes. It will be 2 years for me in October. And I’ve just recently started having these problems. Any advice would be greatly appreciated. Have a wonderful night.
    3 points
  14. Hi Janeece Lovely to hear from you, but sorry to hear you are having problems sometimes with numbness and a little pain in your head and neck. The first two years of recovery for me, i did get some numbness, pain and also strange creaking noises inside my head and ears. I went to be checked and was told this was all part of mending after my surgery and bleed. If you have not been checked out i would definitely make an appoinment just for peace of mind that all is ok. Even 13 years later i still get some nerve pain sometimes around my eye and side of face/head where i have metal plates from my craniotomy. This happens when i over do things or get tired. Wishing you well with your recovery. Keep in touch and let us know how you are doing. Take care Tina xx
    3 points
  15. With many thanks to Catwoman and Clive for their very kind donations. x 🙂 Many thanks to all of those members who continue to donate each month....your kindness and support is very much appreciated. x
    3 points
  16. So pleased you are actually getting somewhere with a possible diagnosis. The not knowing is dreadful. Hope the new MRI gives you some answers and pleased you feel much calmer. Panic and worry always seems to make things appear worse.
    3 points
  17. Hi Josie I was constantly worried about it happening again -as I approach 15 years post SAH, I'm at the point where I have stopped worrying about anything that I can't control. My irritability and being cross about everything is down to being menopausal; so am taking tablets to try to realign my hormones and, therefore hopefully, my emotions. Have you had a chat with your GP about how you're feeling? You never know, they could recommend something. Take care xx
    2 points
  18. Hello everyone, It has been an eventful past 2 weeks to say the least. My second SAH was in July 17th 2020. It has been very challenging but being off during the peak of the pandemic was a blessing in disguise being a healthcare worker. There were lots of ups and downs but I do enjoy and treasure my time with my now 8 year old boy and my husband. I am grateful for them and to my very supportive family and friends and of course my BTG family. Thank you all! Fast forward to July 6, 2021, I had a routine MRI and July 9th a Cerebral Angiogram which are usually performed close to the 1 year anniversary. While in recovery after my angio, my Neurosurgeon and his Fellow who performed my angio came to see me. Unfortunately, they saw irregularities in my MRI and the angio also confirmed that. I was still half sedated at this point so this is most of what I can recall. He said my aneurysm is shifting and proving to be complicated. He recommends clipping it. He explained the risks. My surgery date is September 13th. I asked what should I do or should not do while waiting for my surgery and he said nothing really. I asked the dreaded question of will it rupture and his answer was it's low probability but not zero. I thought of all my other questions after he left. I was in shock. My last MRI was in January and it was stable. How did it drastically change? I thought of giving him a call but after the initial shock I thought whatever will be, will be. My first SAH was in 2010. My second in 2020 was so unexpected and unexplainable. I thankfully survived both. I have learned not to ask the whys anymore and just let go. I am glad they caught it. It is bittersweet news. I go through waves of varying emotions but have to be strong for my boys. This too I will overcome! 💪 Also, I can't wait to rock my clipping scar. 😊
    2 points
  19. Hi Ann Bless you, as the others have said, you have been through so much and now this. Thank goodness they did pick it up. I cant imagine the waves of varying emotions you must be going through, also your family. You are one very strong amazing lovely lady and you will get through this and yes....you will rock that clipping scar 💪 xx Hoping September 13th will come round quickly and wishing you a speedy recovery. Very positive news from Jess Thank you also for all your caring supportive posts to others xx Please keep in touch and let us know how you are doing. Take care Love Tina xx
    2 points
  20. 2 points
  21. Recovery after planned op was fast I was pregnant within two weeks and running for buses lol you will be fine try not to worry xxx
    2 points
  22. Thanks, Jess, Subs and Jean. For those of you who have clipping done, I understand that everybody is different but how was recovery? Timewise? And if you've had coiling and clipping, what are the major differences that you have experienced? Thanks in advance!
    2 points
  23. Hi Ann You have been through so much and yet you find strength for your boys❤️ I send you sincere wishes for continued strength waiting for your September date ...I think you will indeed rock that clipping scar xoxo Jean
    2 points
  24. Hello Ann ...yours is quite a story to share! You have done so well to cope with all that has happened. A second aneurysm 10 years after the first and now a year on finding you have to return for the clipping procedure ..... I can't imagine how you and your family are dealing with the pressures and anxieties. At least you have that date in September to focus on and the relief that afterwards you can recover and move forward. Wishing you good strength for the weeks you and your family must wait. Many thanks for the posts you have shared with our members especially in the past year. Subs
    2 points
  25. So sorry you have to have another operation but I am sure you will be fine its on the 20th anniversary of my op to clip my ruptured aneurysm xxx Try not to worry they called the clipping of my second aneurysm routine relax whilst recovering and don't do to much drink plenty of water xxx Good luck you will be fine xxx
    2 points
  26. Thank you so much subzero and Tina. Your kind thoughts and wishes mean so much. Yes that is a very good point about people close to me. I will be positive and strong for them too. Great advice, I will focus on that moment! I must remember how lucky I am that they have been so thorough monitoring me and making sure I am safe. Looking forward to sharing the good news in August. Thanks again everyone. your replies are much appreciated.
    2 points
  27. Hello Dawny .... so glad to hear that procedure date is has at last been set for next month. Well done for coping so well with such an extended wait. There is always a measure of anxiety with any procedure, and more so when our brains are the area in question. Please continue to be positive for these remaining few weeks, and I can`t imagine the feeling of relief and satisfaction when you are eventually discharged and able to concentrate on the rest of your life. Those close to you are probably even more anxious than you are yourself.... spare them a thought too. Take care and best wishes for `that` date in August. Subs
    2 points
  28. Thank you Kathy and Louise, appreciate it. Good tip about the hydration - i will make extra effort. All being well I will come back and share my experience.
    2 points
  29. I am so happy reading you have found a Dr. who is helping you understand what happened to you. A good patient Dr. can make all the difference. I agree with Mario "not knowing is dreadful"...
    2 points
  30. Hi Jean, I can totally relate and commiserate to your problem here. I have chronic back pain from serious degenerative arthritis. My lower back is so messed up that my balance has gone off and I often walk crooked. Recently I visited a Pain Management dr in my neuro group and went through steroid injections in 4 levels my lower back. That worked great for a couple months, but pain is coming back. I also had a compressed nerve in my neck that was making my hands numb. It took 6 months to get surgery to relieve the compression and now my spine is fused from C2 to T4. Following that 10 hour surgery, in the hospital they were giving me a strong anti inflammatory and Tylenol! Are you kidding me? I had to beg for better pain relief meds, Apparently the US assumes we all will turn into opioid zombies. Anyway, prior to all this ibuprofen was - and still is - my go to for back pain. Tylenol just doesn't cut the inflammation. I have tried prescription strength anti inflammatory (prescribed by a neuro doc) but it bothers my stomach. I have asked about the aneurysms and bleed risk, but my annis are clipped so there is more concern for bleeding ulcers than SAH. Bottom line is that all of us have our own issues and you should consult all your docs before self-medicating. Maybe see a pain management specialist, it can't hurt any more than you already are! Best of luck! (and BTW, my left hand is still numb, dang it. I'm learning to type with one hand) Colleen
    2 points
  31. Update growth on burr hole went to clinic yesterday, showed the lady a photo before I knocked it off. She said it was nothing to worry about it wasn’t skin cancer and was easy treated. She got a canister of liquid nitrogen and sprayed it. So today I have a burn mark where it was, so that’s it I don’t have to go back.
    2 points
  32. Puppies can do that what a wonderful way to stay busy.
    1 point
  33. I used to worry terribly but 19 years later two kids since we holiday every year I have just gone from two and a half days a week at work to six (because of kids not sah) bit I was petrified of going anywhere but since me and my husband split I do it all xxx Life is for living try not to worry and speak to your dr xxx
    1 point
  34. Thanks Tina Louise and Swishy. we got a cocker spaniel puppy two weeks ago so she’s keeping me very busy at the moment, Also making me laugh and smile a lot which I haven’t done for a long time.
    1 point
  35. Same here. Like Tina I have random pains from the craniotomy. These are first places to hurt when I'm getting a headache or when it's cold outside. I have also had numbness in my face, which a neurologist suggested could be aggravated by too much caffeine. And as Jess suggested, other medical issues (for example, spinal) can confuse the cause. If it is extremely bothersome, best to consult a neurologist. Best wishes for feeling better, Colleen
    1 point
  36. Hi Colleen, I really understand what you say...Tylenol just doesn't do much at all...I just flew to see our son a nearly 6 hour flight and I was almost out of my mind with back pain...My neck is also a problem with a pinched nerve that causes pain down my arm and some numbness in my hand...I was so miserable for 24 hours after getting to our sons house I could do nothing...I dreaded the flight home it wasn't direct and was not good but better. I would so love to take Ibuprofen but I was advised not to by my neuro. I had a bleed that they could not determine a cause for. No aneurysm sac was seen... So sorry your hand is still numb...10 hour surgery is such a long time...I do hope you are feeling better. I am thinking of a shot in my neck for the pinched nerve, my back is still a mystery I have sensory loss down my leg, some days I get down about it and feel like no point in trying to get help...but I persist, hoping to make the most of each day... Again thank you Colleen, your post made my day, having someone who understands...this is why this site is so wonderful. xx jean
    1 point
  37. I was just sent home after a week in the ICU after a NASAH. Initially doctors thought it was an aneurysm, but multiple CT scans, an MRI and an Angiogram all showed no evidence of an aneurysm. I was lucky because my bleed was "small." All of the blood has already been reabsorbed. I feel pretty good but I have a sore neck, headaches, and generally I'm just tired. I think what I'm struggling with the most is just accepting this happened at all. It feels so surreal. I was supposed to run a marathon 8 days after my SAH happened. I'm pretty dang healthy, no alcohol, no smoking, low BP, etc. Does anyone else have a hard time knowing how to feel about this? It's a big deal but I'm ok... I'm ok but it's a big deal... It's been messing with my mind. It's nice to see a forum. I love seeing some people talking about exercise again. How do you trust your body to be strong again after something like this?? I look forward to hearing more from you all Karissa
    1 point
  38. Hello Karissa, yeah, your story is similar to mine. It hit me while I was on one of my routine bike rides in the hills near my home--seems these things tend to happen while exercising. As for the "why," the way I look at it, my body is performing a lot of functions through a lot of different systems all at once, and every now and then something is bound to go wrong. All those blood vessels, and one just happened to have a little rupture. I'm just glad that a NASAH is all that happened. As for building up your exercise again, it's best just to start small and incrementally grow the level of activity. 6 months ago after my discharge I could barely make it up and down the two flights of stairs at my building. I'm now back to the same level of exercise of where I was, but it was a gradual process. And I still get headaches and fatigue--just mild versions of what I used to have. And if you do yoga, don't let your head go upside down for a while! You'll notice a theme on this forum--when you get discharged, they generally tell people they'll be back to normal in no time, but they don't tell you that recovering can be a very slow and frustrating process with lots of headaches, neckaches, and fatigue. Best advice there is to just go with it, listen to your body, and take this time to slow things down as you recover. It does get better, especially if you're fundamentally healthy. And you'll have good days and bad days--healing does not happen in a linear fashion, but in fits and starts.
    1 point
  39. With many thanks to Julie for her very kind donation. x 🙂 Many thanks to all of those members who continue to donate each month....your kindness and support is very much appreciated. x
    1 point
  40. Want to do a shout out to the monitors and creators of this website. A LOT of people are told you will make 100% recovery and from a very narrow point of view this is kinda of true. In all of medicine there is a HUGE lack of good long term studies. Having said all that (I am an MD) the FEW decent long term studies paint a very different picture, in one study looking at NASAH 5 years out 1/2 were either no longer employed or working in very reduced capacity. Even people who make “100%” recovery if they had thorough pre and post testing I am pretty sure it would show deficits. My personal theory is many of us have had damage to the reticular activating system or RAS an area where these bleeds occur and is poorly understood and this explains some of the fatigue which dogs us. I find I can do things but “activating” getting going is so hard.
    1 point
  41. Hi everyone, just to say thank you all so much for the lovely and helpful replies. It really means so much and has made me feel much better and reassured. I will go through each one again in detail (still takes me a while to retain information!) but just wanted to say how grateful I am to read all your responses and for the lovely welcome. 😊
    1 point
  42. Hi again, I thought I would try again to see if I could perhaps get one reply. It was my first time posting and took a lot of courage for me to do so. I know that this is a friendly and welcoming place from what I have read in the past and in response to other posters so hope someone will be able to respond in some way. I have received a letter for a telephone appointment next month so hopefully I will know more then as well. Thank you for reading and hopefully replying!
    1 point
  43. Further to my last post, I had my pre-assessment on Monday which was much longer than those I have had in the past - 2 hours in total. I was given a home Covid testing kit and told I would get a call as to when to take the test. Well I've had that call now - I've to take the test next Monday 30th and then self isolate until Thursday 3rd Dec when I will be having the angiogram. I never did get the letter telling me exactly what they're looking for, so I'm guessing that last year when they found this davf by accident whilst looking at my aneurysms, they maybe haven't got enough 'close up' pictures and want to double check the feeders, venous drainage etc. That makes me sound like I know what I'm talking about, but I don't lol - perhaps they'll explain it in more detail at the follow up, which if my previous follow ups are anything to go by, it could be months away. Anyway, just another 6 days of anxiety until the angio is over! Sarahx
    1 point
  44. Many thanks Tina, Daff, Chelle and Claudette for your love and kind words. Today is the day I am being discussed in the MDT meeting, so hopefully I will hear something in the not too distant future. It has certainly been an arduous journey Claudette and losing 6 close family members during that journey has made it so much harder. Love, Sarah x
    1 point
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