GP appointment 😠

Good evening everyone,I hope u are all well!

Today hasn't been the greatest to b honest so looking for advice

So today my partner had an appointment with his GP to discuss a referral for possible counselling in relation to his TBI

Since joining here we have spoke more and he is now more aware of how he acts and wants to change badly as it's really getting him down!

He's not really one for talking especially about emotions as that's where he struggles!so when he made the appointment himself I was so proud of him!so last nite we made a list together of all the things he wanted to talk to his GP about as he often forgets or gets stressed so we thought a list would help!

Today he attended his appointment and they said he should try anti depressants

He was offered several different kinds to which he informed the Dr that he had already been on!so she checked his history and told him to try a certain brand again as he "probably never used them correctly last time"

Im annoyed at this as surely when he told her about his brain injury she should have looked at his records and not relied on him to remember

He explained about this forum and how others had the same symptoms as him and that it wasn't depression!he told her about the terrible fatigue he had daily which contributes to his moods and lack of motivation and in turn makes him miserable!he told her that regardless of how exhausted he gets he can never properly sleep at nite which only makes each following day worse for him!again she put it down to depression and told him to take the pills for the next 4 weeks n come back if there's no difference and then they can look into the possibility of a referral to a psychologist which will also take a long long time!

I'm gutted for him because it really took a lot for him to admit he was feeling like this then go and ask for help and discuss his feelings which makes him really uncomfortable!plus I think he has pinned his hopes on a better outcome!hes so keen to start making positive changes and has signed up to fitness classes to try motivate him more!im just wondering does anyone have any links or suggestions as to who he could maybe talk to for like counselling or just ways he can learn to manage his symptoms better!hes really trying and has already emailed headway to see if they can offer anything as he hates to talk on the phone!any input at all would be greatly appreciated xxx

34 Replies

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  • Dear Gemma,

    I feel so bad that all that good effort is not getting your partner the forward motion he seeks. i have a non-traditional suggestion that might help. See opinionator.blogs.nytimes.c...

    Don't be put off by the talk of depression. The programs are aimed at diverse situations. The article talks about online psychotherapy programs that have been shown to work as well as one on one live therapy. Some of what they discuss seems like it would apply to your partner's situation. Worth a try?

    Stay strong.

    Best

    Taia

  • Thank u so much,we will have a look together,thanks for taking the time to reply,love to u and urs xxx

  • Hi Gemma don't worry they did the same to my partner they put him on an antidepressant and then another one on top of that and made him like a zombie. I got advice from headway, and that was to tell the doctor that he needed to be referred to a brain injury assessment unit, your husband should probably do the same. Don't forget they have a duty of care, and if you feel they're not helping then you can either make a complaint to the practice manager, or research other surgeries. I had to do that, we're both in a brilliant surgery. In my experience I have found gps limited in how to handle bis or chronic conditions. So be prepared to do some leg work, and to stand your ground don't be fobbed off.

    I use to work in the nhs (ambulance service and then worked with nhs direct so I worked alongside a lot of gps) so you get to know the way they work. Some people are lucky and have a great service. Others have to go and search for one. Don't let this little set back affect you both, just make yourselves more determined to get that help that he deserves. Don't let it go on like it did for me and my partner.

    I hope that helps xx

  • As always u are a great help angelfish ❤️ thank u so much xxx

  • Im glad I can help, I just know that it is easy for them to fob you off. If you don't get any joy from your existing surgery ring round some others and ask their policy of care how they handle people suffering from chronic conditions. Thats what I did, if you didn't attend his last appointment, go with him but let him know your supporting him. If you hear them fobbing off tell them he is entitled to a referral to a brain injury rehab unit, and they have a duty of care to him and his family. If they don't support him it has a domino affect on his family xx

  • Hi

    shortish answer as just getting ready for my new pt temp job

    Shame his GP reacted without really looking at notes etc.

    In my experience a good pattern of gentle exercise including fresh air and exercise helps ( but then I live on my own most of the time since then partner upped and left so maybe my moods don't get picked up on much) ...

    In addition my local HW group supplied a list of HW trained counsellors for me to choose from - I had to pay of course and chose after ringing several people to see who I may be comfortable with.

    good luck

    K

  • Thank u for taking the time to reply 😊 as we speak he is currently on his way to a boxing gym(not to actually box but to use the bags n pads for exercise and to try and get rid of some frustration) I'm hoping this helps as I attend a PT twice a week and I always feel great after it

    Hopefully headway offer him something similar

    Thank u so much xxx

  • Don't wait to be offered....ask ☺

  • Exactly the same happened to my dad - not everything can be answered with a tablet however in the 10 minutes they have it often feels like (some) GPs just want you out- in the end I went through my dads neuro consultant and pushed and pushed for a neuropsychology referal (were still waiting 5 weeks later).

    Try head way and ask if you have a local headway nurse we have just got one and she has been great so far.

    It's a vicious cycle and so frustrating when you try to get help - my dad was bounced between mental health and neuro. In the end I have wrote official letter to his GP , His neuro consultant and the consultant psychologist noting my concerns about his well being and that I wanted the letter filing in his notes for future reference if anything was to happen (he was in a very bad way at this point)

    Well since those letters people can't do enough to help him - amazing what lumping responsibility on their desks can do - may be worth a try if you have no luck

  • Thanks so much for taking the time to reply!isn't it a shame the things u have to do just to get the help u rightly deserve

    I will speak with him and perhaps call headway myself as he doesn't like talking on the phone so has emailed them

    I'm glad ur dads getting the help now

    Xxx

  • Well said and great advice, you sound like you have had to go I to battle as well. I think a lot of people think they just have to accept what a gp says to them and gives them, when that's not the case. I hope you dad gets sorted out

  • Hi Gemma

    I can so relate to the situation that your partner is experiencing. Especially the difficulties of not finding it easy to speak out about the difficulties and when I did being at a point where I needed something now and not a year or more sat on a waiting list!

    I spent about 3 yrs post bi being treated with antidepressants because my bi symptoms were similar to depression. But what happened was the anti d's made me more agitated, made my sleep virtually non existent, my mood would fluctuate wildly and crash for no reason etc. So the doses got increased but that made everything even worse! I was under the CMHT and although they had all the info about my frontal bi they didn't understand it and disregarded it being adamant it was depression! Eventually I was so frustrated, upset and struggling to cope that I tapered off the antidepressants. I expected my mood to crash to the depths of being able to end it all ....... but that didn't happen ........ in fact my agitation and crashing mood became less severe! I wrote all this in a letter to my GP and they then told me to stay off the anti d's. What has become apparent is that my mood problems are caused by my frontal brain injury and not depression. However, because we have every reason to be depressed due to what we have been through it is always assumed that is what the problem is. I kept saying to all the drs etc over those three years that this is not like a depression because I am not ruminating negatively etc and my mood crashes for no reason and is not enduring it fluctuates down and back most days and several times a day.

    I was referred and started psychotherapy sessions but the therapist was an analytical therapist so wanted to analyse my childhood. I ended up walking out of the session after a few because I needed therapy to come to terms with what had happened to me and the impact now of my bi on my life! I have had problems trying to access anything else. It is a postcode lottery as to what is available with some areas if they have a specialist bi service (in cities) having good services but nothing near for lots of us! I was referred by my GP to 2 london services but both were rejected. We do have a local Community Brain Injury Team of therapists eg OT, Neuropsychologist, Physio, Speech & Language but no doctors. They rejected me out after a year or so because of my ongoing emotional mood problems and I ended up with the CMHT as I was in crisis! At that time it seems the CBIT had limited understanding themselves of the difference between depression and frontal brain injury mood problems! I am now at a point where I need stratagies to help me manage my frontal bi problems but despite repeatedly raising this with my GP and her trying to refer me to national specialist services I have not managed to access anything. Currently because my bi was a result of Bacterial Meningitis & Septiceamia, Meningitis Now are funding 10 counselling sessions for me. Those session may help me come to terms a bit with having a bi but aren't going to give me the stratagies to manage. There is now a Headway Group in my locality but it is a drop in support group and does not have the other services or access to them that others have spoken off. Again it is the postcode lottery as some people have the bigger Headway Rehab services ....... but not us all.

    Not sure that my response is of any help really other than to let you know you are not alone with the frustatration and unfairness of not being able to access the right help when it is needed ....... or in my case ....ever.

  • Firstly thank u for taking the the time to read this and give such a lengthy reply,I really do appreciate it

    The way u describe things is just like me partner!his BI was 6 years ago now(he was ran over)

    In the beginning he was put on several different anti depressants,one after another as they all failed to help change his moods and much like urs made him feel worse

    So he stopped taking them and just tried to get on with life but as the years have went by he's struggled more and more!he occasionally takes sleeping pills if he's really struggling in the evening but he doesn't like to unless essential as he doesn't like to rely on them!

    He did have the help at the start with doctors and counselling but as the years have passed this his all faded away and I would say now more than ever is when he needs them as he's a lot clearer as to how he wants his life to progress along!i read time after time on here it's all about grieving for the life u had to leave behind and try to accept and embrace the new you but for years he couldn't do this,he didn't want to,and now I feel that he's ready to try and can't get the help :(

    He did attend groups before but it was more of a social thing,catching up,having tea and playing games and he soon came away from that

    There were other places but not for his postcode

    I'm really hoping (if he allows it) that I can attend the doctors with him and I will b more assertive on his behalf in trying to get him some kind of referral

    I really hope that u find/are offered more help because it really is a terrible thing to live with when no one understands or can help xxx

  • This is a quick response as I need to sort my son so will come back later with another response.

    I had sleeping tablets prescribed but was only allowed to take them occasionally, which tends to be how they are prescribed these days as can lose there effectiveness if taken regularly. I have struggled for years with very little sleep and the little I did was not good restorative sleep. Being exhausted all the time then made my mood problems and irritability etc worse. My GP thinks my 'sleep centre' in my brain has been damaged. Recently info about Circadin (Melatonin) got my attention and when I read up on it I thought that maybe it would help me. Fortunately my GP agreed to prescribe it for me to try and thankfully it has improved the amount and quality of my sleep and therefore has lessened the daytime sleep deprived exhaustion, irritability etc etc. Circadin is the natural hormone melatonin that we produce at night time and during sleep. It is supposed to be prescribed for over 50's that have deteriorated sleep patterns/problems. However, perhaps your partners GP would consider him giving it a try?

  • That would b wonderful as he is very similar to u in that way!he is constantly exhausted but can't sleep when he tries,it's always a broken sleep that has him waking very suddenly several times throughout the night!he never seems to feel better in the morning,most days he feels worst as his body just can't get the rest and his mind just won't shut down!i will defo mention this to him

    And also his GP,thanks so much xxx

  • It's not sedative but just the sleep hormone we usually naturally produce in our brain. I still wake in the night but not so frequently and I will doze off again more quickly as used to be awake each time (about every 50 minutes) for a long time and didn't sleep at all after 3 even though I didn't go to sleep initially until midnight! Also when I am sleeping now it is for longer and a better quality sleep so I now only wake 2-3 times instead of 6-8! Sometimes I still get an all night wakeful night but that's usually because there's been lots going on and I'm cognitively worried or overwhelmed. I am definitely not as highly irritable, reactive, agitated and tearful as I was so the sleep deprivation was definitely exacerbating things.

  • This is so like him,thanks so much xxx

  • Hi Gemma,

    If your partner is willing to let you chaperone him at his next appointment (My GP surgery has a poster up saying patients can bring a friend, family member or request the practice nurse attends too), I think that would be a very good thing. My other half has been fighting my corner whenever she's felt I was treated unfairly or dismissed. Maybe you can be his voice when he isn't sure how to articulate himself to the GP.

    I'd recommend speaking with him before you go to agree how the two of you will explain it, so he knows you're there to support him but won't talk over the top of him. It's very important that he feels involved.

    Antidepressants shouldn't be used as a 'quick fix', they don't do anything to address the complicated issues behind the moods. I went through depression a long time ago (Well before my current health issues) and when I first told my GP I was adamant that I wanted a way to address the underlying causes, not to be doped on pills that would hide the issue rather than fix it. If there's a hormonal or chemical imbalance that requires medication, fair enough, but I don't think antidepressants should be used as some kind of 'magic bullet'.

    In my opinion it would be more than fair to ask for a referral and get the ball rolling on the waiting list.

    As far as your partner's difficulty sleeping, hopefully the exercise he's undertaking should help to tire him out a bit as well as elevate his dopamine levels, giving him a sense of wellbeing :)

    Alex.

  • Thanks for replying :)

    I couldn't agree more with wot u have said!GPs are so quick to have u in and back out again without taking the time to get to the root of things!i understand that BIs are complex things and if the GP doesn't have the knowledge required to address this then a referral would be more appropriate than more pills!im going to speak to my partner and see if he would agree to me or even his mum attending(as she is a nurse and also a very direct woman) and see if we can take this further as I understand even with a referral he will still have a long wait so I'm keen to start this sooner rather than later!he likes to do things himself as he hates people thinking he's "a baby" but hopefully he will see we r just trying to help and relieve some of the stress

    He's at his first exercise class just now so really excited for him to tell me all about it!i know that probably sounds daft because he's a grown man but I'm just really happy he's trying something new because that in itself is huge for him xxx

  • That has left me so angry!! These GP's should know BETTER! As if the situation isn't hard enough without just shoving the easy way out at your poor husband!! I had a rather large SAH 14 years ago and like many have said on this site I got discharged with NO help what so ever. My family had to cope with a wife and mother with no memory function -constant pain and I couldn't read or write. Apparently I just kept repeating myself and had no idea I was doing it. I must have drove them round the bend!! I was a really poor sleeper and was roaming all over the place through the night. I believe it's more a time thing than anything else and it just takes an absolute AGE to move little tiny steps forward. The frustration is MASSIVE but I'm sure with the love of yourself and everyone else around you both you will get there in the end but I don't think anti depressants are the answer. I've been told when you start taking them you tend to wake up with a hang over type headache!!! I'm sure that is just what you DON'T need!!

    Good luck to you both and please try and be patient. I know that is much easier said than done but I'm living proof it CAN happen if you wait long enough.

    Lynda

  • Thank u for taking time to read and reply

    I think of all his symptoms sleep is the worst because he's so exhausted all day and that in turn has a knock on with his moods and then when he goes to bed at nite he has a very broken light sleep so he often wakes up worse :( and then he has to start the day again and so on!it makes it hard to do things together or as a family!i know we r blessed as he is fully able to do anything now that he could before!he can drive and needs no care but the damage is inside where no one can see it!he can't sleep,can't remember things,he can't smell or taste and he gets really low or quick to snap when annoyed or overwhelmed!but to a stranger u wouldn't see these things,just the scars!its been over 6 years now and help has been very limited and his patience is eating thin!hopefully if I can attend the next appointment with him it headway respond to his email with more options then we can start to make a difference :)

    Thanks for ur reply,love to u and urs xxx

  • I know EXACTLY how he feels as I looked the same apart from a huge weight loss so I didn't venture out until I had gained some weight back. In my case like your husband I was shattered but couldn't sleep hence the roaming around through the night. The biggest thing I felt I had to cope with was the SHEER FRUSTRATION!! It's very difficult to explain so someone who hasn't experienced this situation but honestly I've been really lucky that where I live I have no neighbours and I started improving when I went outside and started shouting and bawling about the situation I found myself in!! If anyone had seen me they would have thought I was a proper mental case honestly but I later found out if you could VENT the frustration and the inner anger it really helps as your not continually dragging it all round in your head. Take him to the park or somewhere and let him get some of these issues OUT. It might not be the answer but it really made a big difference to me and the only other thing that moved me on quicker than anything was Omega 3 capsules which help the electricity flow a bit smoother in the brain. This helped me enormously with my really bad memory problems. I carried a book and pen round for months and months and 3 weeks after taking those capsules my husband came home and I had no book!! He asked if I had finished the - This is Your Life Programme and that red book went EVERYWHERE with me ha ha

    Lynda

  • It's the frustration that really gets to him!when he keeps it in he finally snaps n then feels awful as do the people round him who usually get the brunt of it!hes started boxing today(just pads and bags,no contact) to see if this will help focus him and maybe help with sleep but also let him take his temper out in a more productive way!i will defo suggest the omega 3 to him and hope it has the same positive affect that it had for u!im so pleased for u and ur progress and for having such a positive attitude and for helping with my partner xxx

  • I found the frustration the hardest thing honestly. It's so difficult to explain the things you knew you could do that were really simple seem really difficult. It's how to VENT the frustration that works for you that is the key. I watched a documentary with that Professor Winston with this class of kids and about 8 kids in the class (they looked about 10 years old) were behind all the rest of the kids but it was proven that it wasn't they were not as clever it was all down to concentration and been able to concentrate for long periods. He put these kids on these Omega 3 capsules and nearly all of them were up with the other kids if not passed them in 3 months then he went on to explain that your brain works like electricity runs through cables. If it comes to a dead end then it stops working but Omega 3 makes it JUMP across any dead ends and carries on working!! Sounds mad but believe me it worked like you wouldn't believe. I could remember things for longer and store information without having to write EVERYTHING down in case I forgot. My husband couldn't believe the difference in me. Once I started with them you buy them in a 30 day supply. Just one a day. As they worked SO well I then started waiting for the offer in Boots of buy one get one free which always came around before I ran out. My husband said he would have paid ten times what they cost for the way they moved me forward. Once my concentration improved then the frustration lessened and then the tantrums began to subside a little bit. I was really aggressive and horrible to those around me in the early stages but it all changed once I got to grips with the frustration. The lack of sleep was bad enough and what's worse your having to think what to do with yourself so you don't wake the whole house up which in itself is anther frustration. It has to be worth a try and might make all the difference like it did me.

    Good Luck and try and be as patient as possible which I know is NOT EASY!!

  • Hi Gemma,

    How did your partner get on at the gym? Didd it make him feel any better?

    Alex.

  • He loved it,he went back again today!never slept a wink last nite but hopefully catches up with him later xxx

  • Should we start calling you Michael Aspel, Lynda? ;)

    I've just started to take Omega 3 and 6 after reading about the potential benefits in the book "Your brain after chemo". Although I've not started carrying a notebook around I am constantly using my phone to take notes, set alarms for various things and add events to my calendar. There's also a family organiser/calendar on the fridge with a column for each person (even the dog!) so I can take a glance each morning and see who's where/when.

    I've found that the quality of my sleep has deteriorated over the last year (At the end of radiotherapy I actually fely like I hadn't slept at all, even after being in bed for 10 hours!) but what I'm doing is trying to change my sleep pattern to go to bed earlier and rise earlier as well. Traditionally I've always been a night owl, which wasn't very beneficial. I'm also going to try and stay away from using electronic devices (TV/mobile) before bed as the artificial light allegedly stops us drifting off properly.

    It's absolutely right that there should be some kind of outlet for frustration. I know that if I still had my driving license there would have been more than a few occasions where I'd have gone to Loch Lomond or Ayr to sit by the sea and chill out.

  • He always has his phone to add notes or set dates and alarms and reminders!its crazy how I've went my whole life (I'm 32) and never met anyone the same as my partner and yet I come on here and there r literally thousands of people the exact same who r also struggling with help!y is there nothing out there?y have so many people been let down or not given the help they so badly need!i love this forum and the amazing people on here but it breaks my heart that so many r in here and feel so let down!

    He loves driving Alex,just to get away or focus the mind on something else,he would b lost without his car xxx

  • Likewise Gemma, I love driving just for the sake of it, especially with such wonderful natural sights just a short drive away. Unfortunately I've got to wait until 12 months after my last chemotherapy treatment to reapply for my license (The tumour is situated in my motor cortex and caused a small number of seizures, so they need to be sure the treatment has brought that to an end.) Having to get buses or ask for lifts is driving me round the bend!

  • I just had to check that it was not my wife writing this as I am suffering the same and the GP response has been antidepressants. If you read the side effects they are all my symptoms. I am lucky that can sleep but do not wake up rested.suffering from fatigue so sleeping in the afternoon as well.

    I have just done a mindefullness course which is more focussed on anxiety and depressions than relaxation, but I found the practices useful in obtaining relaxation and sleep. Just a thought.

    Jon

  • I'm a TBI bloke. Never been depressed, never will be. I recommend 'The Secret' book. Suggest you read it first then hand it over to your other half. xx

  • I have been very emotional and depressed. My doctor suggested Zoloft. I have been taking 50 - 100mg daily and it has helped with no side effects and no "zombie-like " behavior. I had aTBI and resulting stroke from a roll over car accident in August 2016. Take care.

  • Hi Gemma

    Apart from all the other advice here, give the diet book for brain injury and post consussion syndrome suffers a try. Tina M Sullivan, Nourish your Noggin. I think it has helped my mum. It's not too expensive. Mediterranean type diet, coconut oil, fresh fruit, certain spices, avocado, eggs and dark chocolate in moderation are all on it.

    Take care and hope things improve

    J xxx

  • My husband is just the same ...sleeps a lot ,always tired ,no motivation he's on blood pressure meds and statins and antidepressants which I think are doping him up and not helping at all so we went to gps told him and he increased the dose of his antidepressants ! !

    I feel like we were talking to the wall ......

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