momo Posted March 6, 2011 Share Posted March 6, 2011 (edited) http://www.hartlepoolmail.co.uk/news/local/boost_for_brain_trauma_victims_1_1035712 Just read this interesting article today, Edited March 11, 2011 by momo edited Quote Link to comment Share on other sites More sharing options...
Tina Posted March 6, 2011 Share Posted March 6, 2011 Thanks Momo ....very interesting read xx Quote Link to comment Share on other sites More sharing options...
winter Posted March 6, 2011 Share Posted March 6, 2011 Morning ladies! Yes, interesting read. Wonder if the docs in the US have read the study! It could be extremely helpful for so many people who are in need of help afterward. Hope you've both had a lovely Sunday so far!!! Carolyn Quote Link to comment Share on other sites More sharing options...
Sandi K Posted March 6, 2011 Share Posted March 6, 2011 Thank you for posting it Momo, interesting read. Sandi K. Quote Link to comment Share on other sites More sharing options...
kempse Posted March 6, 2011 Share Posted March 6, 2011 Thanks for posting that Momo - I'm sure many will be able to relate to the condition. Sarah Quote Link to comment Share on other sites More sharing options...
Anya Posted March 6, 2011 Share Posted March 6, 2011 Momo, that's good research and here's hoping doctors will understand and be better aware of the implications involved in recovery! Shame we can't get our hands on the results, but I'm sure they will become available online soon!! Quote Link to comment Share on other sites More sharing options...
Trish Posted March 6, 2011 Share Posted March 6, 2011 Many thanks for this useful information, much appreciated. Quote Link to comment Share on other sites More sharing options...
donna79 Posted March 6, 2011 Share Posted March 6, 2011 Sarah - thankyou for posting that I can certainly relate to that x x why is there nothing like that being pointed out in the uk x x Quote Link to comment Share on other sites More sharing options...
JayKay Posted March 6, 2011 Share Posted March 6, 2011 Very interesting! Here's a link to a medical journal that carries the report, if anyone wants to show it to a doctor. It might carry more weight than a piece in a newspaper. Quote Link to comment Share on other sites More sharing options...
KelBel Posted March 6, 2011 Share Posted March 6, 2011 Thanks for starting this thread Momo. It is an interesting one... One of my counsellors told me I was suffering from PTSD however it was never officially diagnosed at my Dr's. I definitely suffered from it, and still do to some extent. I often get episodes of flashbacks, as I do have a very good memory of the event. Once my counsellor had said about PTSD and I was able to read up on it, I felt better and understood that I was having a natural reaction to my situation, and wasn't going mad! Initially I said "I can't have that, that's what soldiers suffer from when they've been to war!" but then it was explained that you don't have to be a soldier to suffer from this, you can get it from experiencing any trauma, and what we have experienced is certainly traumatic enough! Thanks too to Jen for the additional info. Kel x Quote Link to comment Share on other sites More sharing options...
Sandi K Posted March 6, 2011 Share Posted March 6, 2011 Thanks for the link to the report Jen. Very informative. SK Quote Link to comment Share on other sites More sharing options...
Surfer34 Posted March 6, 2011 Share Posted March 6, 2011 Interesting article but not surprising at all. I find the majority of my friends and family dnt have any clue what I went through and what I am still going through. None of them have taken even 2 minutes of their time to research the subject. My sister thinks I am a hypocondriac and that nothing happened to me at all. Quote Link to comment Share on other sites More sharing options...
Sandi K Posted March 7, 2011 Share Posted March 7, 2011 Surfer, that's gotta hurt when no one acknowledges that something life threateningly serious has happened to you and that it will take months for you to resume some kind of routine that looks familiar to your old one. Do you feel like you are constantly educating them? I've told everyone I can that I've had a brain hemorrhage. It's almost the first thing out of my mouth! I feel an obligation to talk about it. I'm surprised at some of the people who know way more about it than I would imagine. Others who I think should know something surprise me by not having a clue. I wonder if your friends and family refuse to see you any other way than your healthy athletic self that you normally are? Do they think that by refusing to believe the enormity of it they are somehow helping you to recover? It's hard to know why people react the way they do without asking them. I'm glad you've got us here at BTG, we know what you went through and what you are going through now. Sandi K Quote Link to comment Share on other sites More sharing options...
Super Mario Posted March 7, 2011 Share Posted March 7, 2011 My sister thinks I am a hypocondriac and that nothing happened to me at all. You are not alone, my sister laughed out loud at me and said that she was glad it hadn't happened to her. She thinks it is so funny that I am disabled. Needless to say I now have little or nothing to do with her, she hurt me so much. Quote Link to comment Share on other sites More sharing options...
Karen Posted March 7, 2011 Share Posted March 7, 2011 Re: Jen's Link for PTSD Clinical Studies, carried out by Dr. Adam Noble and associates. Dr. Adam Noble (Institute of Psychiatry - King's College London) has recently been in contact with Behind the Gray and there is hopefully, a future possibility for BTG members and visitors to take part in a confidential online survey on the subject of emotional difficulties and support needs for SAH research. However, this collaboration is still in the pipeline and subject to the survey being developed and necessary permissions being obtained by Dr. Noble from his organisation, before we can go ahead. Will keep you updated. Quote Link to comment Share on other sites More sharing options...
donna79 Posted March 7, 2011 Share Posted March 7, 2011 Thankyou for keeping us informed Karen x x x x x Quote Link to comment Share on other sites More sharing options...
KelBel Posted March 7, 2011 Share Posted March 7, 2011 Karen Thanks for letting us know, that would be great if it does go ahead... will keep fingers crossed that we can in some way help towards greater awareness of our needs after SAH! Kel x Quote Link to comment Share on other sites More sharing options...
winter Posted March 7, 2011 Share Posted March 7, 2011 Just read the actual report - thanks for sharing the link Jen! And Momo, thanks for starting the thread!! And thanks to everyone at BTG, for sharing and helping one another. Karen, very excited to hear any updates on related surveys, studies. It would be wonderful to help contribute to something that could be so beneficial for so many! Quote Link to comment Share on other sites More sharing options...
Sandi K Posted March 7, 2011 Share Posted March 7, 2011 Karen, that's exciting news!!!!! Quote Link to comment Share on other sites More sharing options...
Anya Posted March 7, 2011 Share Posted March 7, 2011 (edited) Interesting article but not surprising at all. I find the majority of my friends and family dnt have any clue what I went through and what I am still going through. None of them have taken even 2 minutes of their time to research the subject.My sister thinks I am a hypocondriac and that nothing happened to me at all. Yes, thats common enough from some siblings! My elder brother thought I was all fixed & better when I left hospital & since has never assumed otherwise; never asked either! My sisters use humour and refer to my faux pas or tiredness, as must be my "haemorrhoids playing up"!! Mind you I always laugh along with this too!! O'h thanks Jen for that report which I will be popping in to the surgery later! Edited March 7, 2011 by Anya Quote Link to comment Share on other sites More sharing options...
tracy Posted March 7, 2011 Share Posted March 7, 2011 Thanks Jen That definately relates to me. I was told i have post traumatic stress and am seeing a councellor now. I seem to be recovering from the physical side of things but not the emotional,phycological side. I really believe we should have more help with the phsycological side of things when we leave hospital or given advice on how to get more help. I was told i would have headaches and thats it, so go ad get on with my life. Traci S xx Quote Link to comment Share on other sites More sharing options...
JayKay Posted March 7, 2011 Share Posted March 7, 2011 (edited) I've just been reading through that, trying to make sense of the medical jargon lol (and I'm a medical secretary!!). I don't think I have PTSD but I do have the horrendous fatigue that I just can't shake. I do think, though, that I was massively helped by seeing the neuropsych quite early on in my recovery. ETA: a quote from that study: "Using standardized measures, we found that fatigue and sleep problems occurred significantly more often in SAH patients than in a matched control sample. Fatigue and sleep dysfunction were persistent problems for SAH patients, with more than 30% of patients being afflicted by each difficulty more than 1 year posthemorrhage and no significant improvement in these domains being detected between assessments. Alarmingly, the fatigue in the SAH population was, at times, in fact, even higher than in cancer patients undergoing chemotherapy, a group known to experience incapacitating fatigue." Interesting! Edited March 7, 2011 by JayKay Quote Link to comment Share on other sites More sharing options...
Sandi K Posted March 7, 2011 Share Posted March 7, 2011 Jen that particular paragraph was of great interest to me too. I have no problems with sleep, I sleep like the dead at night and get some very deep power naps on some afternoons as well. But most times I still feel the enormous weight of fatigue and get tired very quickly. Today seems to be an exception, it's a good day. More of these good days would be very nice! Sandi K. Quote Link to comment Share on other sites More sharing options...
garyolly Posted March 7, 2011 Share Posted March 7, 2011 Can i just say that having experienced both "WAR" and "SAH", the wording of this article is disturbing to say the least. Listing common factors as war/ conflict and sex attack victims is scary in itself. What we have gone through is scary and life changing. Yes it does make us think very differently BUT we (exceptions) have not experienced the horrors of war / conflict. Believe me, it is totally different. I am not saying that ptsd does not exist but "ANY" traumatic event can be labeled in this way. Every person has a very different way of dealing with stress (that is what ptsd is). It is by no means a new thing but because of popular terminology, things "must" have a label. (thanks america). Everyone has "painful flash backs, bad memories and chronic fatigue" after an accident or tragic event. " A lot of doctors and clinicians are now going to be able to prescribe accordingly now they know what symptoms to expect from someone who has suffered a brain haemorrhage" Instead of prescribing, shouldn't the word be "DIAGNOSING" , a vast majority of SAHers are mis-diagnosed and far too many die because of this. Lets stop doing studies on things that we already know and start getting back to preventive and diagnostic medicine. Quote Link to comment Share on other sites More sharing options...
Karen Posted March 8, 2011 Share Posted March 8, 2011 Many GP's will apparently only see a handful of cases of SAH in their practising lifetime and hence a lot of mis-diagnosis and time delay in getting people into hospital for a scan. The high mortality rate, is particularly shocking and some of that, is probably due to time delays in being finally admitted to hospital for a scan. However, I'm not sure, whether this situation will ever change .... one thing that I do know, is that many people on this site have suffered from high levels of anxiety, often coupled with depression, which can sometimes lead to a lack of confidence and impedes on their day to day life .... whether that is a chemical reaction from the damage of the bleed or PTSD or perhaps a combination of both, I don't really know. At nearly 6 years on, I still endure high levels of anxiety and it can kick in for no apparent reason and also still have what's known as an exaggerated startle reflex ... At my stage in recovery, I wouldn't think that it was PTSD and probably more chemical related due to the damage caused by the bleed, as I don't have any flashbacks now or sleep problems, but would have sure welcomed some help at about 6 months post SAH! As for the fatigue, I still get it, albeit to a lesser degree, but still have to pace myself .... I know that some of the research carried out, seems to be "after the horse has bolted", but it's still needed by survivors, who deserve so much better and who would perhaps have an easier recovery journey in their early years if their mental health was treated alongside their physical recovery. This should also never be a case of "postcode lottery" either, which is often what we see on this site, where after care can vary quite significantly and I feel that the NHS in the UK or Neuro Hospitals, should be rolling out a standard aftercare practice for all SAH'ers, including mental health. Quote Link to comment Share on other sites More sharing options...
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