poppy

Hi Rod, I can tell you a little about our experiences. My husband suffered SAH Septemeber 08. The area of the brain that was involved was the anterior communicating artery frontal lobe, which he had successfully coiled. He suffers from many things, the usual dreaded fatigue, headaches almost all of the time, strange weird sensations in his head, pain behind his eyes, short term memory loss, cognitive problems, confusion, not being able to understand verbal instructions, concentration, mood swings, not always being able to make new memories, and the confabulation you speak of. It is hard seeing your partner change so much and have so many problems and the confabulation at times might add to your own frustrations as it did to mine until I understood what it was. I asked him at one stage was he making up things to fill in the gaps for things he didn't remember, but his answer to me was I am not making things up it is true. I did a little research and will post the url for you to read if you would like to. http://www.newscientist.com/article/mg19225720.100-mind-fiction-why-your-brain-tells-tall-tales.html http://www.memorylossonline.com/glossary/confabulation.html http://www.scholarpedia.org/article/Confabulation_theory It can be extremely hard for a partner to deal with these things and I have at times found it very hard especially when I have to take over the things he is unable to deal with any more, but as time goes on it does get easier, you have to come to terms with what has happened to. I have found that when he is excited about something or gets into intense conversation with someone the confabulation can be a lot worse and sometimes extreme, I am often amazed at what comes out, and I do find it amusing sometimes (Yes it is OK to laugh and smile about it) I only ever interrupt or bring it to his attention if it is something serious or something important that needs attention brought to it. Many a time I have come home and have been told about a telephone conversation that didn't exist or he had been somewhere that he hadn't. I never usually check unless it is of importance. It is something we have come to accept and learn to live with and laugh about. It may or may not get better no ones seems to have that answer. One way I try to help is if we are away on hols or been out to somewhere special, I take pictures and write a kind of diary, then when he has no recollection of something we can still look back at the notes and photos and chat about it. Sometimes it jogs his memory sometimes it doesnt but at least he can see what I am talking about. I have found for the most part accepting what has happened to your partner helps but it can take time. They might have changed to what they were before but underneath it all they are still the same person, they just might have a few problems. You can both get through it together but I know it is hard. Recently he has been given early retirement from his company due to ill health as he is unable to do his job or any other, again that takes time to come to terms with. But sometimes good comes from bad and you have got to turn it all around, we have bought a motorhome put our house up for sale and in a couple of months we are off to tour Europe........... How scary is that. We just dont want to sit by and let the world pass us by........... When something like this happens it makes you stop and take stock of things. I hope this helps Rod, please feel free to pm anytime if I can be of anymore help, but it does get easier I promise. poppy

There is a link on the Headway website for travel insurance for those with pre-existing medical conditions http://www.headway.org.uk/sitePages.asp ... &navID=216 I have got quite a list of other companies that offer insurance for pre-existing medical conditions i can post them here if anyone would like me to. When we were looking for travel insurance for D we discovered that the insurance that comes with our bank account would cover him for a year for £40 so quite reasonable. Poppy

Hi BNF = British National Formulary, it's the Bible of medications so to speak, list interactions, contra-indications and side effects. Here is a link to the website which anyone can join and search for information on drugs, sorry if link not allowed. http://www.bnf.org/bnf/registration.htm Love Poppy T

Good morning, Thanks for you replies, there is so many things that SAH can leave you with isn't there. D doesn't actually have any pain in his head. It is a strange weird sensation that he says sweeps over the top of his head, he finds it hard to explain what it is, sometimes he says it is like a twitch in his head and if he he watching tv or something like that when it happens he has to look away. Poppy

Thought some of you might find this interesting. I went with D to see his GP today, just to give him an update on what was going on, and also D had been experiencing with more and more frequency the strange sensations in his head (Almost all of the time now). We had spoken to both Neurosurgeons about it and they had no idea what it was or what was causing it. Well an explanation from Dee's GP............... It might well be sometime to do with nerves in the head/brain. He said there is medication that could be tried similar to what people take for other nerve pains and for phantom pains amputees experience sometimes after removal of a limb. The only problem was that they can have not nice side effects in some people and he was reluctant to try them at this stage for that reason, but he said if D wanted to try then he would give it a go. D decided against it for now as it wasnt painful. We thought some of you might find this interesting. Love Poppy & D

Hi Tammy, Glad you got yourself on here, there are quite a few of us here now, partners of those that had an SAH. My hubby had his sept last year. This is a great site, everyone so friendly and supportive and very helpful. Please feel free to pm if you want to ask anything at all, or there is anything i can do to help. Poppy

Thank you all for replys and Keith for links, will get Dee to read them. Tina xx

Dee has asked me to put a post on to ask if anyone has problems sleeping post SAH Dee

Hi Scott, D saw his NS today and we discussed the driving issue. His answer was DVLA usually say you can drive if you have had coiling at around post 3 months. If there was surgery that can vary depending on lots of issues. We know from our own experience that if your Dr says you drive and DVLA have not finished their investigation they might tell you as in D's case you can drive until the investigation is finished but each person is an individual. They are very helpful if you phone them. D phoned them again today as he has not had anything in writing from them yet and they told him they have a back log and dont have any idea when he will get a decision but if his Dr said he could drive then he can whilst the investigation is going on. I found some useful info today on DVLA website: For medical practitioners At a glance guide to current medical standards of fitness to drive http://www.dvla.gov.uk/media/pdf/medical/aagv1.pdf You can download it. Tina

Thank you all for your support and good wishes. Dee is coming home today He has had an assortment of tests which were all inconclusive, they are now going to refer him to a pancreatic specialist at Derriford hospital. The doctors think his pancreas might be going into spasm due to a problem in the duct that was disconnected when he had his gallbladder out several years ago. Love Tina xx

Just spoken with Dee, he is feeling a lot better this morning now his pain is under better control. The Dr said he can drink now and try soup at lunchtime and see if that goes. Tina x

Hi all, Thanks for all your support and kind words. When Dee is well enough I will take them into him. Dee had a much more settled afternoon and early evening today, we managed to get him a pta driver for his morphine so he is in control of it now and can give himself a dose when he needs it to keep pain levels under control. At last they have a diagnosis, pancreatitis, even so this can be serious. Today his blood showed raised levels of the enzymes they have been checking for which have not been raised previously, these show/indicate it is pancreatitis. As soon as I walked in and saw him I knew because he was orange/yellow, I teased him about being "Tangoed" I am so pleased the pain in under better control now and he is more settled, think I might have an appointment with a bottle of red this evening Tina xx PS.......... Karen, he said thanks for calling me

Dee not good this morning, he had a rough night and there is no change from yesterday. Tina x

Have another update and thank you all for your kind words. Dee is not so good this afternoon/evening. They did an endoscopy at lunchtime, they saw nothing all appeared to be normal, they did take some biopsys, wont have results from those yet. He thinks the endoscopy has made his pain worse, his pain is certainly worse but what is the cause i am not sure. I hated leaving him like that. Tina xx

Thank you all once again. Just spoken to Dee they are talking about doing all kinds of tests now so lets hope they are true to their word and find out what is happening and get to the bottom of it. Tina xx

He said to ask you all................. Do you know where he is and it begins with H Yes he still has a sense of humor............ or it is the morphine talking! Took him back to hospital yesterday evening with bad agonising pains the same as last week but a lot worse, again he had iv fluid and morphine, they are talking about MRI so i hope they do it, poor thing cant get going on like this, Tina xx

He is coming home today Going to get him in about an hour Thank you all for you kind wishes and support, it means a lot. I am sure D will be on here later Tina x

Poor Dee thought he was coming home today, not in so much pain, they allowed him to eat breakfast and lunch and if all was well he said they said he could some home, but i think there might have been some confusion on someone's part somewhere. We just saw the dr a short while ago and he said he was not happy for him to come home today as he still had some pain, he was going to write him up yet another pill for his stomach. On my way back in an hour or so with some essentials and his pain meds for him as some staff get it right and some dont, they have said he can use his own medication he said. That's all for now Tina x

Hi all Thank you so much for all your kind wishes and thoughts, I will pass them all on today to Dee when I go and see him this afternoon. I have just spoken to Dee and they are going to do some more tests today, he thinks that he might be home this evening or tomorrow. He said that they are "not getting it" about his headache and pains med, after all I told them yesterday, guess I will need to speak to them again, Dee said he head was pounding this morning and he hadn't slept all night. Thanks once again Tina

Not sure if this is the right place for this post so sorry if i got it wrong, just wanted to let you all know Dee is in hospital with what they think is pancreatitis, just something else he doesnt need right now. Take care all Tina (aka poppy)

Hi Karen Good news!!!! I just got off the phone with our present travel insurance which comes free with our bank account, Dee isnt covered under the present policy (which we knew) but for an extra cost it could be covered, i was holding my breath as they were going to quote the figure, £40 wow we were so pleases and that will cover him for a whole year to!!! Love Tina & Dee

Good morning Karen, insure and go phoned me this morning re my quote for travel insurance, whilst we could take out the policy Dee's SAH would not be covered, it could have been because he is not fully recovered but they could not say as it is computer generated. What i did discover though is if you ask for an online quote and then dont buy it they call you the next day and asked why you didnt purchase it, when you say it was too expensive they tell you they can get the price down for you!!! Will let you know how we get on today with ref to getting it covered on our present policy. Kind regards Tina & Dee

Hi Laura, No not nosey at all, its nice people show and interest. We are hoping to go to Florida, have had it booked since April this year, just hope we can get insurance cover at reasonable cost, i am going to phone our present insurer tomorrow and see what they have to say, it might be ok as we had it booked months ago but i think they will probably ask for more money that is why i wanted to see if anyone had any ideas here in case we need to look else where. Doctor said it is ok for Dee to go as long as he feels up to it, so he thinks he will. Will be nice to get away for some sun, we fly on the 18th dec so a few weeks yet. Love Poppy & Dee

Thanks Karen and Laura will check them out as well as calling the travel insurance company we are with at the moment see how much they might load it with. Tina

Does anyone know of a travel insurance company that covers pre-existing medical conditions at a reasonable cost. Any help would be great. Thanks Poppy ANA Dee's other half