advice on mental health support needed please x

[burtongal]

hello u lovely lot , i dont post much as i keep forgetting , just wondering who i should get some mental health support from , a normal counsellor or a specialist counsellor , i have tried talking to a few family and friends in the past about my issues but i found that they changed the subject then avoided me so i stopped opening upto them and if they do get in touch i just pretend im ok , but im struggling with bad thoughts etc , any advice greatly appreciated many thanks x

[mushu57]

Hi , i know how you feel . I contacted mind and it took a few months but start counselling next week . Speak to your doctor to get the ball rolling as unfortunately there is a wait

[burtongal in reply to mushu57]

hi hun thank you for the reply , its hard aint it as noone understands or in my situation noone wants to understand how hard life can be after what we have gone threw , i contacted my gp last year she gave me a leaflet to self refer which i have done today with another place but i will try mind too , i hope u hear back quick for your appointment and i wish you well on your journey x

[mushu57 in reply to burtongal]

Thank you .Got an appointment monday at long last . I seem to get more out of groups like these than my own friends and family, hope you get help soon x

[burtongal in reply to mushu57]

thats great news hun , good luck , i tried telling people close to me about how i feel but they just laugh it off then avoid me so i havent opened up just tried to push threw but i cant do it no more , good luck with your appointment on monday x

[Marnie22]

Hi. Whether you go through your GP or self refer, you generally get assessed and then offered a brief course of something like CBT, possibly then medication. I just want to caution you that in my experience and research findings, the effects of brain injury and how it relates to mental health is not understood by very many doctors, including mental health specialists, at all. There are many symptoms that brain injured people get that are misdiagnosed as mental health issues. One example: If I answer mental health questionnaires that are used in assessments, I come out as having depression. I don't actually have depression. But I do have symptoms from my brain injury that can be interpreted as depression by someone who doesn't understand brain injuries. I have problems concentrating; irritability; fatigue etc. etc. All of these symptoms are from my brain injury. When I was seeking mental health help for adjusting to the changes after my injury, I deliberately wrote all of this on my assessment forms and spoke about it to the assesssors. The people who make the assessments are not very highly qualified. If you are not careful, you will end up on medications for mental health difficulties that you may not have. It's essential that you are able to put all this across when you are assessed and treated. You could get some advice on this from the Headway helpline on 0808 800 2244.

I would just say to try and figure out what might be your brain injury difficulties and separate them as much as possible from whatever mental health difficulties you might have if you can. I know it's difficult, but otherwise you could end up with a very inaccurate diagnosis and therefore the wrong treatment.

I do hope that I haven't alarmed you.

Best wishes.

[burtongal in reply to Marnie22]

hi hun thank you for your reply , i understand what you say i have been trying to push threw and wait and see if my brain heals itself but the feelings im having are from not having support from gp surgeon nurses epilepsy clinic etc but also from family and friends who do not want to listen to me and my problems , the last few months i have been having suicidal thoughts so i reached out and hopefully they will listen and give me advice as i can not stand crying every day , thank you for taking your time to reply i appreciate it and i will take on board what you have said as i agree with you on brain injury but i did ask after my last op about mental health help they just aww im not surprised ur feeling low no offer of help or after care same with my gp oh except she gave me a leaflet for self referral , i have been told i cant take anti depressants on top of my epilepsy meds so im hoping talking and off loading will make me feel listened to , thank you again for your reply means alot x

[Marnie22 in reply to burtongal]

Trigger warning

That's very tough for you. I had similar problems but things got so bad I actually became suicidal and I was still refused help. I ended up getting help from a suicide respite centre run by an organisation called Maytree. I hope things don't get that bad for you, but their number is 0207 263 7070 and they have a website too.

In my experience, mental health service really do not have any idea about how a brain injury affects a person, particularly in regard to mental health.

I have been working with a psychologist and she is brilliant, but even she had to get a colleague to teach her about brain injuries so she could take that into consideration.

I think that calling Headway could be helpful for you. Perhaps you could attend a local Headway group? That has been really good for my well-being, particularly having people who understand that I can be with and talk to.

Take care. 🌼

[burtongal in reply to Marnie22]

hi hun , i think i was lucky i referred myself earlier today not long had a call off a asseser i have a telephone appointment next week i think telling her i was feeling suicidal and had planned a few ways to do it that they got me in quickly , to be honest just having her taking me seriously has made me feel a little bit better , the first step is the hardest , i truly believe that brain injury can effect a persons mental health in different ways and my journey has been awful no aftercare no help no support has pushed me to my limit of coping , the life saving surgeons fiddle with the brain but forget that underneath the brain is a person who will cope differently some are ok after others arent but i have found they didnt care as they did there job so bye bye , all i want is to wake up feeling like life is worth living , if i feel the counselling is not helping i will ring headway as i now feel more confident that my problems arent tiny like my family and friends think it is x

[Marnie22 in reply to burtongal]

Good for you. I hope you find support and help. It is something people don't understand easily, that is true. The Headway helpline is brilliant for support. I agree with what you said about the surgeon not understanding. In my case I got no help or support because a surgeon actually caused my brain injury by not following proper procedures. He told me about it, but then he lied in my medical records so none of the subsequent doctors believed me.

[burtongal in reply to Marnie22]

thank you hun , me too as i want my life back , i think alot of people think once you have had the op you are ok but for some of us it does not work that way , as theres fatigue headaches mental health etc to deal with after , which i was not told about by surgeons nurses etc so when after my first op i started feeling them symptoms i just thought i was being mardy , oh goodness hun thats awful i hope you complained etc i no i would , im sure my first surgeon messed my brain up on first op as i now have very little memories of my past life of 55 years i get little flashbacks but nothing big it frustrates and depresses me , i think drs nurses etc think the surgeons are like god but forget there human and can make mistakes but maybe the surgeons need to own up they aint perfect x

[JoannaHelen in reply to burtongal]

Hi B,

I have experienced suicidal thoughts and fantasized about death like yourself and after reading yr post I burst into tears just at the similarity of our experiences and so many others on here. The honesty in this on-line community is a form of therapy and healing in itself. You are not alone. Keep reaching out. Hope you find all the support and strength you need.

Jo 🌷

[mushu57 in reply to Marnie22]

I so know where you are coming from . Since being home I have researched an awful lot about brain injuries and i do have concerns as to whether it will be the right type of treatment .Have been trying for months to get help . I have been diagnosed with ptsd . One of the main things that i cant seem to move on from is the hallucinations i had for three months after and it was me that found out that this was common in itu . Also when i was sent back to my local hospital as my brother said an ill dog would be treated better than me , it was awful . I will give headway a call . I hope that you get all the help you deserve

[burtongal in reply to mushu57]

awww hun im sorry you had a rough time i feel for u , we can try thats all we can do after what we have been threw , i have come to realise the brain is a very delicate intricate organ and every brain injury survivours journey is different but we should all be treated with care and respect and be offered all the help we deserve , i broke my ankle about 4 years ago and i had more after care and help after that than i did after each of my brain operations , yes give headway a call i will if i dont get anything off mind , i hope you do too hun x

[mushu57 in reply to burtongal]

I do wish you the best and yes totally agree, because our illness is invisible people just expect you to be ok and that goes for doctors too x

[Cat49 in reply to Marnie22]

My husband has a head injury and I am a therapist. A lot of coping strategies for depression would be applicable for people with head injury. Please dont be put off and hope you can find someone who can adapt to your needs. My husband is seeing a neuro psychologist now and I can confirm what she is doing with him has many similarities to what I do.

[Pairofboots]

I would push your GP for a referral to a neuro-psychologist, and possibly a neuro-psychiatrist. Don't get tied up with the long job titles, you are not mad, you have a brain injury. These are specialists in people with brain injuries, and that sets them apart from general mental health services, that take the symptoms in isolation from any injuries, and may miss diagnose the issues you have.

I would also consider contacting the Headway helpline, contact details are pinned to this page. 🍀

[burtongal in reply to Pairofboots]

hi hun , i will if MIND dont help , not that i hold much hope at my gps as i have told her in the past i was low feeling suicidal she gave me a leaflet , same with the surgeons and nurses at notts hospital they just said awww im not surprised ur feeling low after all uve been threw , that was it nothing else , sorry i just feel very let down by the professionals maybe thats y i never reached out for fear of not being heard ,thank you for your reply hun i appreciate it x

[Pairofboots in reply to burtongal]

I am sorry this has been your experience, keep reaching out. It took me a long time before I was stabilised, I felt very much like you, and had a number of crisis. I used to feel like giving up at times, but at my worst, there was still something in me that made me reach out one more time. There is help available. Until you find it, keep in touch with this forum, night or day, we are here for you 🍀

[burtongal in reply to Pairofboots]

thank you hun , to be honest it took me along time to reach out after my experiences in the past and not being heard made me think oh well my problems aint worth much if the professionals aint bothered but the last few months on and off i have been thinking and dreaming of suicide which then makes me depressed so last week i took all my mental strength and reached out and within 2 hours i had a call off MIND and that 15 minute call made me feel a bit human like someone wanted to listen to my moaning and my worries , hugs for u hun and im glad u r in a good place u have given me hope , sorry i tend to ramble on lol x

[Pairofboots in reply to burtongal]

All rambles welcome x

[Hidden]

Hi Burtongal, I’m sorry that you can’t talk to friends and family about what you are going through. I’v found that family and friends have their limits regarding anything that’s troubling. It could be that they find it difficult to deal with and/or don’t know how to relate to what you’re going through. I feel there’s a sense of relief on this forum as you know you are not alone and can speak openly and freely about how you feel without people clamming up or changing the subject or making light of things. I don’t have a brain injury but my daughter does and it has been life changing. I hope you get the help you need 👍🤞

[burtongal in reply to Hidden]

hi hun , thank you for your reply , i think my friends and family are not used to the new me as i think i used to be a strong happy joker of the pack so i think the new me scares them , she scares me , i dont talk to them bout how i feel now i just pretend im ok which depresses me even more , hugs for your daughter and for you and ur family x

[Leaf100]

Generally brain injury is not well understood.

I have tremors and usually end up with people trying to treat me as anxious.

In my case the injury resulted in lack of emotion rather than over emoting, ,which is more expected it seems like. This also leads to misunderstandings.

A therapist that is not bi literate is not going to get it, and may cause more issues than they solve.

If they turn out to be a person who listens non judgemental that may be helpful, though.

CBT is only useful to a point, in my opinion, as I have found a lot of people who facilitate it just repeat the text book and do not get it, and have not been in circumstances themselves and do not understand when it is actually not helpful, and CBT is easily misapplied. Anyway,you may find it helpful, just do not expect it to be 'the answer'.

ACT is better, on my opinion. (Acceptance and Commitment Therapy ) This is not yet commonly available through the NHS. You can find stuff online about it you may find useful if you can self direct a certain amount. From my limited experience with this, it includes acknowledging where you are as real in some sense that CBT does not. And, as Stella said on YouTube- she can sit at the bottom of a flight of stairs in her wheelchair and thinking positive thoughts is not ever going to get her up those stairs...

I have found groups better, where bi people are together and have some time to talk about common experiences on a certain topic, including coping strategies and may share references to helpful people in the community.

Generally it is good to try to get what you can out of what you can access and then move on if it is not working for you. And, keep trying.

Maybe talk to Headway about how this might look, they likely will have some good advice for you.

Leaf

[Painting-girl]

So sorry you've been feeling like this B. It's horrible - I think from a previous thread, that quite a few of us, me included, have had suicidal thoughts. The symptoms of depression and brain injury are very intertwined. You did really well to ask for help. But however your feelings happened, whether directly or indirectly from bi, luckily psychotherapy and antidepressants do help ( though I see you cannot take antidepressants with your other drugs). I've had both. It really helped me, I'm okay at the moment - stopped pills without drama (except for venting on here) in February. I was also told that I would retain a tendency to more depressive episodes subsequent to my concussion / MTBI.

Like Pairofboots says, if you can get to a neuropsychologist and or a neuropsychiatrist at some point, that can be very reassuring and supportive, because neuropsychologists totally get brain injury effects. Neuropsychiatrists are the drug specialists for brain injury - so are more likely to find a helpful drug combination for you.

Don't be too hard on your friends and family, if they haven't been there themselves, they'll find it hard to know what to do. You might find further down the road that they can still be a source of support - but it's always very hard to explain BI and depression to other people, the range of responses we get can be really quite random. I think any therapy will be a start and give you some useful 'tools' - but you will find a good neuropsychologist who you feel you able to connect with, will probably be most helpful.

I hope you get the support you need from your current referral while you track down some neuropsychology.

Take care, talk on here as much as you need - and sending you a virtual hug x

[Dillm3]

Hi, GP is probably the first person to discuss the first step with

[Cat49]

Look up your local NHS IAPT service. In my area they are called Mindsmatter. You self refer and they will assess your needs and are also able to tell you about voluntary sector counselling which is also free. Your GP surgery will also have this info. In my area you can have counselling or CBT. In the meantime ring Samaritans as they are great listeners and headway too.

[mrros]

In general, it is possible to find an excellent private specialist and arrange for an anonymous appointment. Modern clinics look as lovely as psychological centers, so there is nothing to be afraid of. For most bipolar patients, it is pretty realistic to find a treatment regimen at home without going to the hospital. But that's just the beginning. Even if the medications work great, loved ones will have to make sure they take them regularly. A course of a few months will suffice for most, but some will have to take them for years for prophylactic purposes. That's when the resistance to treatment kicks in. But in any case, you should see a psychotherapist psychoanalystlondon.com/

[burtongal in reply to mrros]

hi hun , if i could i would as my mental health is so up and down at the mo x