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  1. Today
  2. Hello Winb, We got really bad news for husband. He will be going on Erivedge, which is chemotherapy for 10 months. And even after that, looks like he may still lose his eye. I know this is the time to be supportive of him, but me being so stressed has my head pounding and none of the meds work to make it stop. In front of him, I am strong, but alone, all I can do is cry. And I work at a call center, so I have to act all happy. I just thought I had a high stress level with my issues, but seeing my husband going through this is no comparison. Again, thank you for listening to me vent!!!!!!
  3. Yesterday
  4. Thought I would share this with the BTG community (sorry should have done this sooner but only just found the weblink....). Headway Cambridgeshire are running a "Breaking down barriers" 13 week course, to help those with brain injuries return to work or to get involved in volunteering. The next course in my region (East of England), is being run in Peterborough, places are limited but I don't think it is full yet. The course is a mixture of OT rehab type activities, CV advice, interview strategies pertaining specifically to brain injury issues, and ideas and resources for volunteering (within the context of having a brain injury). I am not sure if other county Headway organisation are running this or not, but I can thoroughly recommend it, having attended the first one in my region in St. Neots. Here's a web link: https://www.headway-cambs.org.uk/whats-on/news/community-connections-breaking-down-barriers-1 It was a great opportunity not only to go over some of those important rehab / cognitive exercise / fatigue management strategies, but to do it in a small group where experiences could be shared. All of us on the course found this particularly invaluable. If you are local to Peterborough and think you would be interesting, its coming up very soon, contact the organisers and they are good at moving quickly to get the right folks enrolled. I haven't posted or visited for a while, I hope all here in BTG land are keeping well and happy. All the best Greg.
  5. Hi Kathie, My Daughter told me about Behind the Grey and it has helped me a lot. Just knowing we are not alone in this is a good feeling, so try not to rush as you will take two steps forward and one back. I get tired also, but take care of you and try not to stress too much, not good for you !! I wish you well on recovery and anytime you feel a bit down or need advice come here as we have all been there, and you are not alone. Best Days work I did was to come on here, I sometimes leave laughing. Get weird looks from Dog and Daughter lol xx Take care and take it slow until you can look back and say "Hey today was a good Day" it will come xx All the Best Winb143 xxxxxx
  6. I'll pass on your thanks Paul. xx
  7. thank you Karen it has taken me by surprise im pleased others have supported you and please pass my grateful thanks onto them again a very humbled paul xxxx
  8. Love and hugs Paul....we're all with you. x Some of the older members on BTG who haven't posted for a while and have moved on from BTG, but are friends on Facebook with BTG Facebook and myself, send their love and condolences, as they remember your personal support and Lin .... Sarah, Carolyn, Tina W, Michelle D, Janet, Jen, Keith, Leonie, Sandi, Kelley, Donna, Margaret, Vivien and Mary.... their usernames on BTG are different, but they're all thinking of you and send love. x
  9. A few months ago, I listened to the audio version of the video below from scientist, Rhonda Patrick on the benefits of sulforaphane in the diet. I began consuming broccoli sprouts with regularity. A month ago, I had a subarachnoid hemorrhage. I'm recovering quite well from it. I don't know if there was any beneficial relationship from the sulforaphane I was getting in my diet, but I will continue with the broccoli sprouts just in case.
  10. Last week
  11. For the above forum you don't have to be disabled to get advice. You would be advised to contact your local Citizens Advice Bureau, Welfare Rights Dept at your local council or county council or even an Unemployed Workers Centre for a full Benefits check. Disability is more a functional or mental deficit. Get onto it asap as benefits now take quite a while to sort out. The last place you want to ask Is at the Job Centre or the DWP help line as they very often give wrong advice and information so try and avoid them
  12. Thanks Super Mario. Do you have any links or can recommend any web sites to enquire about any benefits I may be entitled to as my pay goes to half pay soon and I'm a single parent so really worried as you can imagine. Is this classed as a disibility, temporary or not?
  13. Welcome to BTG. You are still in the early days of recovery in the case of a SAH, so yes it is normal in most cases. You have to take things slowly, baby steps, because if you don't you will end up taking backward steps. Fatigue may get better, only time will tell. Everyone's recovery is different, there are no hard. fast rules.
  14. Hi, I'm new to Behind the Grey. I had a SAH on new years eve..... worst new year ever! I spent a couple of days in neuro HDU, all scans revealed no cause for the bleed so no idea why it happened. I am still on long term sick from work on advice of my surgeon. My job is stressful and is 12 hour shifts which are a total no no at the moment. On a day to day basis I'm not too bad as long as I don't do anything too taxing. I can manage to socialise for 2-3 hours and then feel a bit 'whoozy' and have to go home and rest. If I push myself to do much more than pottering around the house, I suffer terrible fatigue for the next 1-2 days and struggle to even get off the sofa. The headaches are definitely settling though. The constant dull headache has gone but I do get a sharp headache if I get stressed or over tired. I'm starting to get concerned about my long term future and my ability to return to my job. I thought that I'd be able to manage to do more than I can by this stage. Is this normal? Will it get better, will I be less fatigued?
  15. Thank you Paul for helping my Daughter Bessie /Sarah when I was out of it. So a great debt is owed to you and all on this forum xx Hope All goes well with you and once again thanks xx Kindest Regards Winb143 xxxxx
  16. hello my dearest friends thank you for all your lovely response's it has helped and supported me to come to terms with Linda's passing which has been very painful however im going to try and put a copy of lins service card on here and possibly a picture of lins flower tribute before it was placed on the casket however I will also stop posting on this page as I feel lin would like to support others who are going through the same situation as we have gone through I cannot thank you enough for everything you have done for both lin and me I feel extremely humbled by your tributes and care and love you have shown us both god bless you all and thank you I will listen to the music which has been lovingly put on Linda's page by the special person who I think knows how much it means to me god bless you all my love paulxxxx PS may I also thank everyone who donated in lins memory to BTG I am stunned and so grateful my heart really is so so grateful that you found it in your hearts to support Karen and the site god bless you and thank you
  17. Missran, It is always with us, guess we just have to say to ourselves "We will beat this" easier said sometime !! But a song and a smile can always help us xx What happened to us was out of the blue and scared us, but we are still here xx So keep smiling and singing Happy songs, we do need happiness in our lives after what we have been through xx Love Win xxxx you have a Good Doc xxxx
  18. Hey i know it's been a while since you posted, but i wanted to say, I'm afraid all the time. Every head ache, every dizzy feeling, every nausea. It's been 10 years. It's ok. I have a deal with my doctor that he continue to give me peace of mind every couple of years with regular checks. I go whenever i feel scared.
  19. Hello Ruth Thanks for your post. So sorry to learn that you have been diagnosed with Trimengal Neuralgia. Has this condition just recently affected you. Dealing with recovery from NASAH and now this must be so hard for you. I do hope the medication starts to ease the pain soon. Neuralgia pain wherever it occurs is so debilitating. My wife suffered from postherpetic neuralgia in 2012 6 months after her SAH) It occurred following a second bout of shingles and affected her left arm. Every three or for hours, she would experience an incredible burning sensation which would last only about three minutes... but she screamed and cried with the awful nerve pain. I felt so helpless as I could only watch and hold her until it passed. She was prescribed medication which brought the pain under control. A few months later she was hospitalised due to a medicine error not related to the neuralgia. All her medication was halted and incredibly the neuralgia pain did not return. I do hope your GP can help you and I sympathise with your suffering Subs
  20. Had my SAH in December 2015. Have just been diagnosed with Trimengal Neuralgia. Have to say that I am not enjoying the Tegretol tablets and they are not yet really working. Think I'm going to try and push my GP for an MRI scan/referral.
  21. I am also watching an untreated aneurysm. My latest MRA mentioned an infundibulum? anyone else?
  22. Hi thank you for replying. Anoxia is caused by the lack of oxygen to the. Brain from the aneurysm and that's what causes the hemiplegia. It leaves the effects of a stroke . My was caused by a fault from birth. i was in hospital for two and half months before transfer to Hospital closer to home. I was there for another two months and learnt to walk again it was during this process that some idiot in rehab said the words brain injury on the assumption that blood had seeped into the brain and I had a blood clot removed from my brain. Which was not the case. Sadly I had an aunt who suffered mental health issues and my family pigeon holed me. My best friend and G.P confirmed I was in sound mind. I am walking and in good health. i was just wondering if anyone else may have had a similar experience. I am pleased you are well again Best wishes jen
  23. Thank you so much Winb!! It is such a relief to be able to talk with people that understand.
  24. MelMel, We are here if you need to give vent, as you have it hard what with hubby also. So I wish you all the best. Get the worry of clots in legs sorted as you have a lot of stress at the moment. On here you do not have to say you are okay when on a downer, have a moan we are entitled to it especially You with hubby ill also. Hope all goes well for you both xxx Love Win xxxx I'll say have a good weekend, but if you need a moan go ahead xxxx
  25. I do not remember anything after my op Jen, All I was told what was wrong and I had a bleed, it took BTG to tell me it is a form of stroke lol xx Sorry I am not much help but whatever happened how are you keeping? Well I hope. Gonna look up Anoxic now xxxx
  26. How many of you after a Subarachnoid Haemorrhage had the expression brain injury not explained properly by not saying it was anoxic brain injury due to lack of oxygen to the brain that caused the hemiplegia and instead your family thought it had affected your mental health.
  27. Earlier
  28. Thank you Winb!! Other than my body absorbing the blood, I have had no physical lasting effects. I mean pain of course, short term memory loss, stumbling over words, and lost in mid sentences. These pains in my arms and legs have me worried about blood clots. However, considering what happened, I do know exactly how lucky I am. Sometimes I feel like I should not be complaining. Knowing how everyone else that has had a SAH has severe disabilities. Again, thank you Winb!!!
  29. Thank you Subs!!! I do have a great support system. My job does have me scheduled half days and tell me if you feel like you can work longer, I am more than welcome. That is really the only support they offer. It seem all I do is sleep. However, it is only a few hours at a time. My body got use to a 4 hour sleep schedule from being on nimodipine for 21 days. First 3 weeks I could barely walk. The pain from my body trying to absorb the blood was about as bad as the rupture. More than half the time I am home alone. My husband works out of town during the week. That is a bit frustrating, but he has to work. I have no children, so fortunately, that helps a lot. This also has my blood sugar unmanageable. My stress level is well beyond what it should be. My husband is about to go through cancer treatment(basal cell carcinoma, that has spread to his internal organs). So his income is is about to be minimal. This is why I am pushing myself to work more. Depression has set in. No doctors seem to care about that. Which get frustrating. Friends ask how I am. I tell them I am ok. It gets tiring hearing that someone is not ok all the time. A lot of people do not continuously want to hear bad news. After awhile, they just stop asking and avoid talk to me. Which is another stress trigger. My bosses have stopped asking. Especially after I told them the doctor is not doing surgery. Oh, and I am only 37!!! Thank you again!! It is great to know I have found an online support system.
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