Coping with Hyper-sexuality and Sexual Disinhibition

[AndyH]

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

[rince]

Pre SAH I used to help out at our local Headway, and as far as I know this is a fairly common condition caused by head injury. There were a couple of people who suffered from this complete lack of inhibitions with the opposite sex and we as helpers were fully briefed on how to handle any situation that could be seen as being even remotely "sexual".

Scott

[AndyH]

Pre SAH I used to help out at our local Headway, and as far as I know this is a fairly common condition caused by head injury. There were a couple of people who suffered from this complete lack of inhibitions with the opposite sex and we as helpers were fully briefed on how to handle any situation that could be seen as being even remotely "sexual".

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.

[rince]

There are huge problems with "hidden" disability, just because we don't present in a physical way people are all too easly dismissed and their problems swept under the carpet. Headway is an excellent starting point for finding information about the majority of problems any aquired brain injury (ABI) can cause, they can also point people in the right direction to get help as well. The stigma of "mental illness" looms large and can put many people off seeking help, help which is there if you know where to look.

Scott

[Karen]

Hi Andy,

I am so pleased that you've written this ... I was always hoping that you would come back to the site and share your experience.

I had never heard of sexual disinhibition when I first started this website, until you mentioned Heather's disinhibition and then I started to research it.

I'm sure that your post will help many others.....

[AndyH]

I am so pleased that you've written this ... I was always hoping that you would come back to the site and share your experience.

I had never heard of sexual disinhibition when I first started this website, until you mentioned Heather's disinhibition and then I started to research it.

I'm sure that your post will help many others.....

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

[Slim]

Hi Andy,Heather

Fair Play to you both, thank you for being so open. We have had no sexuality Issues as such. Although at Christmas my Mum had bought me quite a revealing top (accidently. She wanted to pin it and I wouldn't let her) I was chuffed with the male attention. Whereas before I would have told the guys to wind their necks in and been mortified. Now I'm more back to myself. Sorry this isn't anyway near with what you both are dealing with.

Donald and I had a big relationship talk a few weeks ago, I feel that our main attraction for each other has always been primarily based on personality, and with the 'brain damage' session a couple of weeks ago I felt if I don't feel like 'me' anymore how can he still love me. (I have def became very crabid and Donald is the one I take it out on most. I was really placid/easy going before) With the Marriage vows I said well I don't feel that I'm the woman he married i would understand if he called it a day. Although this was heartbreaking to suggest. It was a talk we needed to have.

Upshot, Donald feels its not as bad where hes at, yep he does notice changes and he was very wise, he stated that if people go through any sort of trauma, bereavement etc, it undoubtly changes their relationship but relationships are meant to change and grow.

I sorry this ended up more of a ramble about me. I think communication is the key. How does Heather feel after such an event, do you have an emotional fallout? That must be extremely hard for her to cope with as well. But I think you are both dealing with this fantastically. I haven't had many experiences with brain trauma prior to this, I do know my temper is disinhibited so I can understand how that would affect other area's as well and possible because its about Sex other folk aren't feeling able to talk about it openly, and I think its great that you are because its bound to affect other folk.

Good Luck with your Journey.

Aine xox

[Slim]

I took that long type this missed all posts in between. Fantastic that you are doing training. It is tough that you two are the pioneers so to speak but its great that you'll be able to help so many people.

Aine

[AndyH]

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

[Skippy]

Hi Andy

Awareness definitely needs raising in all issues for SAH sufferers and sex is a major part of marriage. As you know my SAH occured just after making love and my sex life has taken a downturn since. it's a culmination of other things too - Paul is working late, I'm tired or was scared until I saw my neuro guy etc. We're working at it but it has been difficult but love will and does conquer all - cliched I know, but very true.

I'm glad that you and Heather have such a strong marriage as to get through all that the SAH has thrown at you - despite the problems you're both an inspiration as to how difficult times can be overcome.

I admire you both greatly.

Take care and I hope things continue to improve.

Headway in Nottingham - is that on Edwards lane next to the hospital? Not far from where I live.

Sami xxx

[AndyH]

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

[Skippy]

Hey Andy

Divorce has never even entered ny head through all this so i guess I have been extremely lucky in my recovery with that too.

I know that I have to be just a patient with myself as Paul is but i tend to beat myself up if I feel I'm slower than ishould be right now.

Thanks though

Sami xxx

[andyp]

Hi Andy and Heather-I have to say how much I admire you

a-for your honesty and

b- for how you have handled this issue and turned it around

It must have been incredibly difficult-I am not sure I would have coped with it very well at all.

Our situation was different and because my SAH happened during sex that has dampened that area of enthusiasm somewhat!

I never really thought of a brain injury having that sort of effect

I love to see something that could be so damaging turned on its head and used to help to others so well done for that.

You are very brave to deal with it like you have.

I am interested to know what actually has happened in the brain to make this happen-Is it an increase in hormonal production with some injury to the hypothalamus being the cause?

I am asking in particular as I have been doing an OU course in Human Biology and my current and last assignment relates to sexual function/hormones and infertility treatment-that was a result of the SAH which has given me an interest in the subject.

Thanks for the reminders on relationships and how to keep them good-The SAH brought that home but i still need reminding!

Look forward to any info-All the best

Andy P

[AndyH]

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

[andyp]

Andy-thanks for your reply.

I was discussing this with my wife who is a critical care nurse.

She tells me that part of what you mentioned on the ward is not uncommon with brain injuries -but then she only experiences what happens on the ward -so the rest was perhaps more unusual.

I couldn't help but read your post again-I really felt for you.

On this site we all talk about how an SAH affects the family of all sufferers

which of course it does ,but what you have been dealing with is on a totally different level.

I was trying to imagine how I would cope with things in your situation-and I really couldn't think that I would have.

Will Heather need to take medication for the longer term or is it likely that things will settle down?

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?

Is it only recently that they are looking at blood tests then?

Excuse me for asking so many questions- but it is really good to be able to discuss something like this openly-and you never know who else in the world is looking for information and might have similar issues.

Best wishes

Andy P

[AndyH]

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!

[Guest Firefly]

I am so sorry about Heather! I had a rupture almost 2 years ago and I still have cognitive, coordination, blurred vision, light sensitivity, severe headaches... I am still recovering but, am getting better as time goes on. If you can afford therapy to help her it would be great!! Everyone is different!! I am still on many meds. including anti-depressants. My Dr. told me the 2 year mark is usually a "turning point" in recovery. I still have no sex drive either??? I hate it!!!! But, I am trying very hard to take care of my hubby!

I think it just takes a lot of time, I still have terrible memory problems... She is lucky to have such a caring hubby to take care of her!! Mine has been a "Saint"!!! He and my sister have taken very good care of me!! I have come a long way!!!!! I think time is the main thing, the brain takes a long time to heal! If she is not sleeping well, that will prolong her recovery and cause her symptoms to worsten. I had insomnia for over a year. Now that I am sleeping, I am healing much faster!! Diet and water intake can help also.

I will be keeping you guys in my prayers!! Tricia

[sue]

Andy,

just been reading through your posts, WOW! let me just say this, you and Heather have a really strong marriage, you sure are going to be pioneers in your field!!!

Bless you both,

keep on the path that you're on,

Love Suexx

[AndyH]

Thank you Sue.

[Annie]

Not a lot of time to respond this morning, AndyH, but I'm also very grateful to you for your willingness to share on this site. I know there is someone out there that will find great comfort in that if they experience the same difficulties. What a weird and wild thing the brain is. Best to you and Heather. You're doing great!

xo,

Annie

[rampmama]

Wow, Thank you for sharing your story. I am very gladeveryone agreed this topic should be here. I knew I wasn't the only person struggling with sexuality issues. Your story is very inspiring. I am so impressed by your commitment to Heather. God Bless you. It is not an easy role our spouses take on while we heal. Thank you for your honesty and I will keep you and Heather in my prayers.

Let's keep this thread going. I am sure it has been of benefit to many in our group.