Jump to content
Search In
  • More options...
Find results that contain...
Find results in...

Hello!

By registering with us, you'll be able to view our forums in full as well as discuss, share and private message other members of Behind The Gray. Why not join us now?

CharlieD

Members
  • Content Count

    54
  • Joined

  • Last visited

Community Reputation

66 Excellent

About CharlieD

  • Rank
    Member

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  1. That's great Bev, how frustrating you have had to wait for so long the relief but I am glad you now know however they do it there is an end to the suffering.
  2. Thanks, found it. Donation all done. This is a great site and has certainly helped me through the tough times. I hope it continues to do the same for others.
  3. How do you make a donation to the site? I can't find a donate button. Might be because I am on mobile.
  4. Hi, 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.
  5. Hi @Patc I had my bleed May 18 and have been left with much the same as you but headaches are also a real problem for me. I do have the strange sensation at night. I described it as like a wave going over my head and down and usually ends in that feeling in your stomach though sometimes it has ended with burning sensation everywhere. I see a neurologist and I told him it feels almost like a seizure, I feel wiped out after it. He gave me an eeg but said as it only happens at night it is unlikely to show. (The eeg showed slowing of brain intermittently, he said he would expect some damage like this after an SAH) He said sometimes there are different forms of seizure activity and its v hard to know for sure if this is one. He increased my gabapentin at night and it has reduced it massively. I am sooo glad about this as I hated them all the time! Not sure if that's the same as what you have but it sounds like something similar. Good to hear others experiences of these things👍
  6. That's a lovely post to read and know that she still has a great life ahead of her. All the best.
  7. Congratulations on 5 years! Its lovely to read you have made such strong friendships.
  8. Hi Ami It sounds like your colleagues are not being very supportive considering all you have been through which is a shame but that is their problem. You just worry about you. I thought this might be useful. https://www.headway.org.uk/media/6580/managing-fatigue-e-booklet.pdf It is a great way to understand fatigue and could help your boss and colleagues to understand. Good luck.
  9. You are not the only one. I have for sure had those thoughts more times than I can remember. I have a friend I made online and in 1 year she said she has genuinely only worried maybe 5 times it was happening again. I said I usually worry that in a day. I think some people just react differently and can't do believing it was a one time thing and move on as well as others. I am def one of them! I do think time has helped me the most and I hope it will continue to. I have also started therapy which is helping. I am better in the days and I try to make sure I rest plenty so I don't feel as bad physically which helps but I do think for me the worry is one of the worst parts of recovery.
  10. Hi Ruth Welcome to the site. I enjoyed your first blog. My experience was almost the same as yours minus the day as a gnome. I look forward to reading your next one.
  11. Thank you all for your kind words. It is a journey to be sure. @ClareM I am working with my neuro to find the right treatment for everything. It depends what day you catch me as to how that is going😆 I know am a big siesta fan. In fact I have one on the floor of my meeting room at work all the time. Lol Wishing you all well.
  12. It seems unbelievable that it has been a year. Lying in my hospital bed and then coming home and being told I will go back in a year. I didn't really believe I could survive a year I felt so bad but here I am. It's been without question the toughest year of my life. I am a different person to who I was, strangely I don't see that as all bad. I know what and who is important now. I found out who my friends really are and thankfully I have lots of them and an amazing family. When I read about people who do it with little support I wonder how they manage I have been left with a brain that does some crazy things, weird sensations and awful head pain at times. The fatigue dictates how I live my life as I have to rest and can't go a full day without a nap. My neurologist thinks I might have nocturnal epilepsy so that is a new problem to overcome but I made it. I worried today I would be an emotional wreck. Well it's not over yet but with lots happening at work, kids to get to school and a generally crazy morning I find myself feeling grateful. Over the last year I have read so many posts saying just be grateful. If I am honest they have made me uncomfortable as after something like this it's very hard to make yourself feel a certain way. I was dealing with my recovery and still am. So I will put not put pressure on myself to feel grateful but to always feel empathy for others and their journey. Thank you for this site. It has helped me enormously when I have needed to scour for information and others who have been through the same thing. I hope to be able to support others in their early stages and I am sure I will continue to have questions. Everyone always says the first year is the worse but one day at a time for me still. Let's hope today is a good one.
  13. Congratulations on your 4 years. And for being able to live with such a positive attitude. This is something I am currently trying to alter my mindset to, as you are right, worrying does not change anything. I was 39 when it happened and turn 40 this coming week. I hope when I turn 44 I can make such a positive post. Take care.
  14. Hi Jimble. I have had an eeg, not had results yet but nothing happened during test so am sure was all fine. It sounds very similar to what you have. I was told to keep a diary of when they happen. I am not surprised you worry after your second. I really hope the MRI is clear and you can get on with your life. I have had a few occasions where I have wondered if I have had tiny bleed but decide to wait and see. Did you know when you had the second?
  15. Hi Dave, I'm glad you are recovering so well. 8 months now for me and am not sure I am where u r but hopefully one day. Hi Bev, I know what you mean. I feel like I go through phases where improvement stops then i see a small change. I felt that a few wks ago. Its like a rollercoaster. I have times when I am feeling better but I do suffer quite badly with head pain and fatigue. It is such a change from how life used to be but my favourite line these days 'it is what it is'. I still think accepting what's happened and coping with anxiety is still one of the hardest parts. We must have had ours quite close together I was in Queens Romford, how about you?
×
×
  • Create New...