AndyH

Thank you Sue.

Hi there Clare. Firstly let me say how sorry I am about your mum. I know what you are going through. My wife suffered a SAH in May 2005. She was in a coma for nearly a fortnight. During the coma they clipped the aneurysm that had burst so she had a very lengthy operation. I think it took around 5 hours Vasospasm can occur after SAH and after the operations. It can occur in the brain but also elsewhere in the body. As far as I am aware it is a narrowing of the arteries caused by all the trauma the brain has suffered. They counter this using medication and constant fluids. They give the fluids to raise blood pressure, I think (anyone reading this please correct me if I am wrong). There is still a risk of it reocurring but they do take measures to lower the risk and the nurses and doctors are constantly on the look out for it. I wish there was something I could say to ease your suffering at this time. I can tell you this though. When Heather was admitted I was told there was NO chance for her. I was told if she made it through I probably wouldn't be able to look after her. The fact is, she is here with me 2 years later, she has her driving licence back and she is going to return to work in the future. So there is hope. Take care. Andy

Hi there. My wife, Heather, is 24 months in and she is still incredibly clumsy. I have been told that this is because she has lost part of her field of vision and because of this her depth perception isn't as good as it was. For Heather she is more likely to trip when going upstairs or in a new environment. Take care. Andy

Hi Andy. I want people to ask questions in order to raise awareness of these issues. Will Heather need to take medication for the longer term or is it likely that things will settle down? The medication is being monitored and every now and then the doseage is decreased. I then monitor her behaviour and if it gets worse we go back to the other dose. One of the difficulties is Heathers lack of insight/awareness into this. Heather doesn't recognise any problems with her behaviour and still has difficulty linking it to her SAH. So really she has put her trust in me to decide whats best. Can you imagine how dis-empowering that must feel. If as you mention there was some sort of damage to the hypothalamus or hormonal issues are there any other affects physiologically that Heather has to cope with? There is still no definite diagnosis in regard to the cause of Heathers Hyper-Sexuality. Both hormones and hypothalamus have been mentioned but we have nothing definitive. As for other physiological effects there have been many. Phyisically heather is fine, minor weakness down her left hand side and slight vision problems. Cognitivley the deficits are very wide ranging. Of course if you were to ask Heather how it has affected her she would say 'I have a few memory problems and my vision is worse than before, but thats about it'. Is it only recently that they are looking at blood tests then? Yeah its only in the past months that it has been suggested that they begin looking for the root cause. This is because they wanted to see how things began to settle down and it takes a while for this to happen. Heather has come along far enough for her to be able to see someone who can work with her on a cognitive level. Her insight is such that she should respond to the suggestions and hopefully raise her awareness far enough to cope without medicines. Feel free to keep asking questions Andy. Off to get ready for work now. Byeeeee!

Good morning Andy. At the moment no-one is sure as to why this has occured in Heathers case. There have been suggestions, two of which you mentioned above. We are waiting for blood tests that will tell us whether or not it is hormonal. Currently Heather is taking two medications to help her cope with Hyper-Sexuality. One of them is Setraline (200mg daily). Setraline is an anti-depressant and on first using it there was a small but marked decrease in her sexual activity. This however passed and while her sex drive was lower the effect was negligible. After that they put Heather on Dianette. Dianette is a form of contraceptive pill and works hormonally. This has had a strong effect and has proved invaluable. These days Heather will sometimes say she doesnt want sex and has even gone 2 days without it!!! After a couple of weeks taking Dianette I noticed an interesting side-effect, as Heathers sex drive was lowered her cognitive skills improved. The improvement seemed directly proportionate to the reduction in sexual activity. I am no scientist but thats how it seemed to be. Also I am not the only one that has seen massive improvements in her, it has also been commented on by friends and family. I hope this has opened a new avenue and will in some way help you with your last assignment. All the best. Andy

Hi Sami. Not sure if its next to a hospital , haven't really wandered round the area yet!! It seems that most of the people I have spoken to on here have or are working on staying together through it all. Brain injury has a very poor record for marriages. A lot of people end up divorced. We are lucky that we started off strong and that we were always open and honest with each other, it gave us a good foundation on which to fight through this. I hope your SAH related 'bedroom' issues are resolved soon. Take your time and relax. In the end things do work out. Take care. Andy

Hi Slim. No need to apologise!!! If anyone rambles its me!! Yeah there have been many emotional fallouts. But we have always resolved them and worked through them. It isn't always easy but we work on it. We too have had the same discussion re marriage and vows again we agreed to give it time and work through these times. I realised after researching brain injury that recovery is a slow process and we are still in the early days of recovery (2years this month since Heathers SAH). The first 2 years are just the beginning. We have a long road ahead of us and at times we will struggle again. Hopefully we will continue communicating and resolving the issues as they arise. Keep up the fight!! Andy

I have just been incredibly busy and have popped back a couple times. Just never had time to write anything. No excuse and I am back again now!! Just doing my best to raise awareness and helping people to cope with this stuff. I have done a few talks to professionals and carers about coping with this kind of thing and have been asked to talk at some other training events. I was very nervous about standing up in front of 100+ people and discussing sex!! Heather supports me fully in what I am doing and is even going to take part in some Q&A sessions. Anyways take care karen. Andy

Headway have been excellent. We travel to the one in Nottingham to see Steven Shears. The condition is quite well none amongst some organisations and some of the staff. I think a lot of the difficulty with Heather has been the fact that she presents very well and doesnt show any physical signs that she has had any kind of injury. because of this people don't always think that she is doing anything untoward.

Hello everyone new and old. Its been a while since I have posted anything so, I thought, why not start with the 'hidden' disinhibition! And as always I am going to jump right on in!!! After Heathers SAH I noticed a significant change in her behaviour. This started way back in the Intensive Care Unit so I will start there. When she was first admitted there was no movement, none, nothing, completely still. This went on for days. Eventually movement began to come back and one of the first thing she did was- wait for it- masturbate!! Well I was a little shocked by this and didnt know what to do other than move her hand away constantly. It got to the point where I had to tell the nurse. The nurse was good and told me that this was normal. NORMAL? I thought to myself, NORMAL? this is anything but normal. I was told that it happens a lot after brain injury and left it at that. So on we move to the ward. During Heathers time on the ward she would often masturbate and ask me for sex. We would go to the toilets and have brief and incredibly intense sex. I thought it was me she wanted and was very flattered. I didnt see what was going on and I put this down to the whole SAH experience. Whilst on the ward Heather would often get lost but, the nurse told me, she could always be found on the mens ward!! I thought nothing of this and put it down to disorientation. Heather was eventually allowed home during the day between appointments and the high sex drive continued. We would get home from the hospital, which was 5 mins from our house, and go straight to bed. I have to say that at this point I began to wonder about what was happening but I put it down to Heather enjoying a new lease of life and to her just having had a near death experience. I was very flattered and very happy at this new development as any husband would be!! A few of my friends that had been round to see me said things like 'You want to watch her Andy, she is going to get herself in trouble' but I didnt really here them, I was too busy being happy at having a wife that was alive, recovering and at home. It was during this time that the first incident occured. I will keep it brief and to the point. I saw Heather leave for the shop and watched her walk off. A builder over the road saw her and whistled/ shouted at her and Heather went over. I saw her talking to him and went back about my business. I happened to glance out again and I saw her go into the house. I saw her, through frosted glass, kissing with this guy and couldnt quite believe what I was seeing. I remember standing there at the bedroom window thinking 'Am I really seeing this?' I couldnt get my head round it, it was like looking at an M.C Escher optical illusion!! My brain finally kicked in and I ran over to the house. I found this guy with his hands up Heathers top and she was kissing him on the mouth. I wasnt best pleased and didn't deal with the situation as I should have. Heather couldn't explain what had happened and I realised that we had a problem. I spoke to our counsellor from the hospital with Heather about this incident and I linked it to her high sex drive. I was told nothing about what the condition was and was advised to get Heather to carry condoms. In fact the counsellor (specialist in brain injury) told me that she had not actually come across anyone that had a higher sex drive after a brain injury before! She put Heathers actions down to being unhappy and disinhibited. I left there feeling slightly deflated to say the very least. On we went. Incident followed incident. My friends told me of text messages and conversations that Heather had had with them. She had invited men from the street to the house. Heather even propositioned my Dad, unfortunatly he encouraged her behaviour and this led to a split in my family. Not all friends told me about what was going on and the odd 'friend' took advantage of the situation. I was becoming increasingly frustrated I asked for support from a variety of agencies including social services and was told that there wasn't really anything to offer. My family did all they could but they lived a fair distance away and all of them worked full time. I still didn't realise the full extent of how extreme Heathers condition was. I was back at work full time, I was looking after our son, I was looking after Heather, finances, housework, everything was down to me and I didn't always see what was going on. Eventually Heather wanted to go back to work so we spoke to the OT's. I told them of Heathers problems but, as they weren't medically diagnosed, I don't think they were taken seriously. I arranged a meeting with Heathers employers and Heather was to attend work 3 mornings a week on a voluntary basis. We were both very happy about this. I told the OT's who were going to be co-ordinating the work experience that they have to explain Heathers problems and that she is to be supervised and monitored closely. Alas there was a communication breakdown and no-one was told of Heathers sexual issues and she ended up sleeping with a male colleague. I was devasted. My partner of 15 years had broken her vows to me and I was devasted. I couldn't understand it. What was going on? It was nearly the end of our marriage. I had been spending a lot of time researching what was happening. I had access to the internet and spent my time searching for information. I read books, I found people that had experienced similar things and it was this knowledge and these people that saved my marriage. On the one hand I had to deal with the devasted husband side of it and on the other I realised fully that this was another sympton of her brain injury just like her memory, just like her eyesight. This wasn't the last time that Heather had an incident and it wasn't the last time that our marriage nearly failed. Heather attended a group for people with brain injuries. People who were used to dealing with this kind of thing. It was there at Osmondthorpe Rehabilitation Centre that things started moving for us. After a number of incidents there they called a meeting and asked me to attend. They told me that Heather was too high maintanence and they were unable to cope with her behaviour towards male clients. Heather was told she would no longer be able to attend. They then sat and spoke with me at length. They explained what was happening and they arranged for a specialist social worker to meet us. I met the social worker. She was fantastic! She arranged for Heather to be fully asessed firstly by herself then by a psychiatrist and then by anyone else that may be able to help!! She gave me lots more info on dealing with any sexual behaviours and how best to challenge it. I then attended a training event run by Headway. The event was about coping as a carer and was run by a guy called Steven Shears. Steven Shears is a trained psychosexual therapist and couple counsellor he also specialises in sex and sexuality after brain injury. I managed to grab him after the session and we arranged to meet in Nottingham with Heather, Steven and myself. Finally we had someone who fully understood. Steven is also, as far as we are aware, THE ONLY SPECIALIST IN SEX AND SEXUALITY AFTER BRAIN INJURY IN BRITAIN!!! There is only one! Surely there are others like us I asked him and he said yes there are. In fact there are too many. Too many for the limited resources, too many left unhelped and undiagnosed. Steven tapes our sessions and uses them to help train others. Heather and I are happy about this as it is an issue that needs dealing with. We are still learning to deal with this aspect of brain injury. Heather takes medication and we see a Sexual Psychiatrist. We still see Steven and we still have incidents. Most of all we are still together. My little family is still here, together. The keys to this are as follows. 1. Communication. Speak to each other, openly. Speak to your doctors, your specialists, everyone and speak to them openly. Explain to your close friends and family any issues that may come up. Communicate everyday and listen to the answers. Ask how you can support the person with the injury. 2 Knowledge. Find out what you can. Search everywhere. Ask questions and never be satisfied with the answers, keep asking. Books, internet, libraries, anyone that has worked with brain injury and anyone that has cared for or is caring for anyone with a brain injury, brain injured!! Above all ask them. 3 Acceptance. Its a hard one but if you can. accept it as part of the injury. Accept it and move with it! Don't fight against it, that will not help. 4 Patience. As with all aspects of brain injury this will take time. Be patient to support the patient. Its difficult and its stressful but remember the person you are caring for may be struggling with this too. 5 Medication. Find out what is avaiable to help control libido. Once the urge is 'controlled' you can begin to work on other ways of dealing with this behaviour. 6 Tenacity. Never stop working at it, never stop learning, never give up!! 7 Support. You are not alone in this!!! You have family, friends, medical proffesionals ask them for support. Seek others that have experience and share yours. Speak to those people who have been through or are going through similar experiences. Websites like this one are a good place to start. We can support each other. Never be afraid to ask for, give or recieve support. 8 Remember. Remember why you are with this person. Remember who they were and who you were to them. Things will be different, sometimes very different. This remembering will give you a solid foundation to work from. 9 Flexibility. The person you love may be very different now. Remember this person has changed throughout your relationship. I met Heather when we were 16, she wasnt the same person when we married at 21, she wasnt the same person I married when she gave birth to Louis when she was 27, she wasnt the same person that gave birth to Louis when I left her on the morning of 21st May 2005, and she wasnt the same person when she woke from the coma. She isnt the same person that woke from the coma now either. Change happens daily, sometimes fast, sometimes slow. Learn to be flexible and flow with it. 10 Love and Forgivness. A difficult one this and all I can say is never lose sight of it. Its part of all of the above. If your loved one, wife, husband, son, daughter makes a mistake then forgive them and move on. Learn to forgive not just in this matter but throughout your life. It can only serve you better if you put more forgiveness in your dealings with your family, friends and fellow human beings. We all make mistakes. These are some of the things that I use on a daily basis. I hope that some or all of this has been helpful to you. If anyone wants to ask any questions then feel free to ask. I am currently involved with helping to raise awareness of this issue and anything I can learn from anyone on here will be helpful. If you want to ask questions privatley then message me and I will give you my number. Anything you want to share will be strictly confidential. As for us, we still deal with incidents on a daily basis and things are getting better. We are still in love and the future looks brighter now. Keep on keeping on. Take care. Andy

Yes my friend you did! Now its the pronunciation thats key Louis is pronounced as it would be by the french Louee. louis gets very offended when people call him lewis. Andy

Hello you 2 Heather had severe migraines from sometime just after Louis was born up to having the SAH. She now gets the occasional headache but no migraines. The doctors do not beleive that there is a link though, strange that, but thats what they think. See ya all. Andy

Good morning Karen, Heather had 3rd nerve palsy and he r eye was shut for months. Its totally cleared up now. On the other hand she had tersons syndrome in her right eye. Its when a vein bleeds inside the eyeball and it fills with blood. It is still clearing up and if she chooses she can have an operation to remove any residual blood. Other than that her eyesight is fine. We are waiting for a field of vision test again to see if she will be allowed behind the wheel of a car again. See ya soon. Andy

Reasons why. 1. Nice people 2. Mine of information 3. Support 4. A sense of belonging 5. Inspiration in the things I read and people I speak with 6. Karen started it! 7. I can moan 8. Honest comments on stuff I write 9. Everyone is welcome and everyone here is welcoming 10. It provides a support group that is sadly lacking within the NHS How about your reasons?

Hi Sammi, I may have already asked this but how long is it since your SAH? Heather is 18 months into it and is now having more good days than bad. It has been long and we have struggled. Sometimes it has felt like there will be no end but now the light is beginning to shine and I keep glimpsing it at the end of our tunnel. I keep a written record of the ups and downs, sort of like a graph. Its good and keeps me focused on the ups. Sometimes feels like there are only downs but when I check my chart I see that there are ups too and more of them. The light is still shining no matter how dark your days seem. Sometimes the clouds obscure the sun and it feels cold but, the sun is still shining and if you keep looking up you will see the truth in it. The sun is still shining we are all still here. Take care girl. Andy H

Forget the V shape. Get a tempur pillow, Heather bought me one for my birthday a few years ago and I...... am..... going to stop myself before I sound like a cheesy commercial. Andy!

Hello all. Heather likes to listen to stuff by Paul Mckenna and Richard Bandler. She finds that the relaxation and trance stuff help her to feel more relaxed. If anyone wants a copy of any of the cds we have please let me know and I will send them to you. Andy

I have sent some now and I await your harsh but honest criticism. Lol

Hello everybody. Things are good today. Yesterday I had to go on a works course about Sexual Health and Young People. There are some nasty diseases out there!!! Ugghhh! Anyway after the course I was going to Manchester to go on a Thai Boxing seminar. My worry was what am I going to do with Heather from 9.30am through til 10pm at night? I was worried because this would be the longest she had spent alone and I was panicking a bit. Heather offered a solution. She asked if she could go to my sisters in Manchester in the morning and if I could pick her up after my seminar. Hooray, Heather came up with an idea of her own and felt confident enough to negotiate the journey alone. I rang my sister and she said that she would meet Heather at Piccadilly station at 11.25 am. Heather and I planned the journey for her down to the last inch. I went off to my course and left Heather alone to do her thing. Wow, I thought I was worried before.... I don't think I heard a single word said on the course all morning. I was waiting for the call to say ' Hi Andy I made a mistake and got on the wrong train, I am now in .....' or I got off at the wrong station' or a call from my sister saying ' I have been waiting for 1 hour and she still isnt here'. Time had slowed down to a crawl in the course room and everybodys voice had slowed to an unintelligible sludge. I watched the clock and managed to fit whole sentences between the tics and tocs! I was watching the rain out of the window and found that I could follow a single drop as it fell. Time had become like wading through a tunnel of tar. Then my phone rang 'Hi love its me, I am in Beckys car and we are off to the Trafford center, ring me when you can' followed by 'Love you see ya later'. She made the journey, she arrived safely, she didnt get lost, she didnt do anything wrong at all! I was relieved that she was safe but that was nothing compared to how I felt in regard to how far she had come in her recovery!!!!! mmmmm joy is a good emotion and I would like to see more of it in the world. Take care everyone. I am off to float around on my little joy cloud and do my best to sustain this moment. Andy

I am going to send you some stuff that I have written over the past months. Some of it is dark and some is nice. All of it comes when I feel down. Well I hope you enjoy it. One condition though. You have to tell me the truth whether you like it or not!!!! Take care Karen. Andy

Hello all, Looking at this site now I feel like a proper fraud! So many new faces and new posts. Hello everyone new and old! Heather and I are once again on the up n up. Its a constant upward trend with dips and variations in the recovery rate, but all in all things are getting better. We are 17 months into this and still going strong. Heathers been told by all involved in her case that they think she is ready to go back to work.... Woo Hooo! So a meeting was arranged at her work in order to work out the fine print on her return to work plan!!!! They have agreed to the graded return and have said that they will support her and make any changes in to her role to accommodate any difficulties that she may experience!!! They then went on to tell us that they are very happy she is well enough to return but unfortunatley there is no paid position for her to return to. What?????? 'We will support you and we agree to make all the changes and put any support you need in place but we havent got a job for you!' Ha ha ha ha! What does that mean? It means that we are in communication with the Disability Rights Commission and an employment law solicitor. Well looks like I will still be working extra hours for the forseeable future. Other than that bombshell Heather is doing really well, especially with her memory. She can also find her way around places better. Its good to see all this happening. Wow 17 months later and still improvements are happening. The brain is ace at compensating and recovering. I am constantly impressed with the stuff I see in her recovery. Insight and disinhibition are tons better. I hope it continues for a long long time. Gotta say though- I am tired, some days all I wish for is a chance to go back in time and rest. Sort of go back to a time before the SAH and lay down and rest, recharge my batteries ready for the next mountain. To go back for one day and lay in my garden and sleep in the warm sun. Go back to a time when I had not a care and spend time wallowing in my freedom. Lazing around enjoying luxuries like peace of mind, spare time, financial freedom, career ladder, long holidays walking in the Lake district with my beautiful family, time to spend enjoying rain on my face, time alone witout a care in the world etc. Build me a time machine and watch me fly!!! I am patiently waiting for those times to return.... Til then, head down, rucksack on and off I go. I got me some hills and mountains to climb. See ya'll Andy

Hello rossigirl. Welcome to the site! This and the site it sprung from have been a massive help to me and hearing from others that have had similar experiences has been helpful too. Its good to feel like you are not alone. The support i recieved has often been better than the support I have had from the NHS. I havent had a SAH but my wife did in May last year. She is still recovering after 10 days in a coma and 3-4 months in hospital. If I can answer any questions for you feel free to message me. Well I gotta go. Take care. Andy

Hi Karen, I havent been on for a while due to ongoing issues around my darling Heather! How are you? Hope things are settling a bit. I know what you mean about digging for info on the net. I scared myself silly when Heather first had her bleed. Luckily all the stuff I found was worst case scenario and fortunatly we managed to avoid all that! Well on to the dehydration and sodium stuff. Last year (2005 pre-bleed), I went to Thailand for a month. I was out there doing Thai Boxing, training twice a day in tropical heat! I soon began to feel very ill and experienced massive bouts of lethargy coupled with very painful headaches. When it got really bad one of the other westerners asked me if I had been taking any salt supplements. I told him no, that I had just been drinking water. He then produced some packets of electrolyte salts and told me to have 2 a day. I had one immediatley and within 30 mins I felt 100% better. When I went this year I didnt suffer at all and I think this is down to the fact that I was having electrolytes twice daily! Anyway, thought this might help. Take care. Andy

Hi Karen, Just to follow on from Annie. I am so pleased that so far the results are neg! I also feel let down by the aftercare and support from the NHS. We have an OT that I wouldnt trust to organise a p*** up in a brewery and fails to communicate aanything in either direction. I am sick to the back teeth of being told 'we will have to see' when I ask about timescales. I am tired of the buck being passed and having to do everything myself. I am working full time, looking after H, looking after my lad, doing the housework, arranging therapists and psychiatrists and psychologists and hospital appts etc, liasing with Heathers work and so on. It is the most frustrating thing I have ever been involved in. My role of husband and father has been flipped completely and is coming to be resented by myself and Heather. I have to provide 24 hour care and balance everything else along with that! I have asked for support from various avenues and they tell me that Heather is not elegible for anything. The bureaucracy involved in getting anything means that anything offered is too ****** late! Still such is my lot. I still have my wife and son. So I shall continue doing what I was put here for and I shall continue doing it with a smile (as best I can anyway). XXX Andy

Hi Lauren, Well it sounds like me and your Dad have quite a bit in common!!!! I went mad for housework when Heather was in hospital for 3 months. All I could think was the house has to remain pristine for when she comes home. I thought this even when I was told that she may not be coming home. I am coping on a day to day basis, even now. It has been the hardest thing that I have ever had to do. I was faced with the prospect of being a widower and a single parent, I was going to spend the rest of my life without my best friend, my lover, my soulmate, my wife. When the initial trauma wore off and I realised that Heather wasnt going to die I began to set targets/ mile stones to work towards. The first one was to get Heather out of hospital for overnights, once that was achieved my next one was to get her home. after that it was get her better. I have to measure each step and re-evaluate the next one as it happens!!! I suppose that I cope with the chaos by trying to put it in order. I have become very regimented in how I deal with day to day stuff. Emotionally, I am still learning about how to cope. I have come to terms with the early stages of Heathers illness and the impact that that had on me and our son and I am coming to terms with the long term implications as they happen. I am closer to my family now after years of self-imposed excile as the 'black sheep'. I also know that love is a second to second thing and it is unconditional, to love someone is not set in stone, love to me has become fluid, an ongoing eternal way of relating to the people around you. I cope by focusing on the positives. Sometimes its hard to do but I keep on doing it. I hope this helps in some way. Feel free to ask me any questions, I will answer them honestly and openly. Take care . Andy