Sorry for the rant. It's been 7 months and every day I try my best to put my injury behind me and then I remember all the things I have lost because of the head injury.
I have post concussion syndrome, central nervous system damage.
I have been put on gabapentin to treat the pain and well it does treat the pain I no can't sleep for longer the 7 hours between dosage and then I have the fun side effects of nightmare, the other day my work was so hectic that I missed my midday dosage and by the evening I was in withdrawal.
I hate that my 5 year old brings me home cards that say " I hope your brain feels better soon" i grow up having to be an adult instead of a kid and I feel like that's what I have does to my kids. The fact my 5 year old can even say "gabapentin" kills me.
The other day the pain lasted 24 hours that I slept most the day well watching my 3 year old. I couldn't ask anyone for help because out side my ex husband i have no one and I to scared to tell him because he already fails to see the impact of my injury just tells me " you where like that before" and I'm scared he will say I'm unfit as a mother in the divorce.
I want my life back, I want to be able to play with my kids with out the pain or scared how my evening will be.
Sorry for the rant I'm just feeling so alone in all this
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LeeSchmidt
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Hi Lee.. I'm new here too, suffered a TBI Nov, 2018. Thankfully no nervous system damage but do suffer debilitating dysfunction (not confirmed) of the endocrine system. I too grieve for post TBI me, I'd just finished my degree in life sciences but I haven't been able to pursue it or even work. I do have good coping mechanisms now but my god its a journey and I feel I have been left to work stuff out by myself in regards to a diagnosis.
I've not heard of the drug, so did a quick Google. Doesn't sound great to have to take, I assume it functions by blocking pain signals from your brain? How the hell are you managing work and parenting with your life impacting symptoms?
I feel for you, it must be extremely distressing. Your ex being dismissive of how the injury is impacting you isn't helpful at all. I hope he isn't the type to weaponise your injury to try and make your life hell.
Your children sound amasing. Please don't blame yourself, they love you no matter what. It's a hard learning process and it's a very personal journey so please be kind to yourself. I know it's hard, your on an emotional roller coaster and only time will help with that.
Are you getting any neuropsychology help? I found it good to talk to someone who understands and can maybe help you work through your feelings.
You sound like you've got way too much to deal with, do you get time to yourself at all?
I haven't been to one of headways support groups,, but maybe if you have one near you that could help connect you to others who will totally get it.
Wow congratulations on that huge achievement, a degree in science sounds amazing and must have been hard work.
In the space on 6/7 years I have only had 1 "me" day and that was to attend my work Christmas party.
Today I was sent home form work for having a meltdown at work. I must say my boss is unbelievably supportive,
I had one MRI and that was it. Other then that I can't afford the cost to see a private neurologist. What about you? Are you getting much help?
The medication does truly help but I'm sure you would have seen it has 2 huge side effect. Not
My ex wouldn't be stupid enough to use it against me, at the moment we have a very civilised divorce and he knows I can change that in a second. I agreed to walk away from what the courts would say is fair if he agreed to keep and open and civilised relationship with me. He cares more about money then most things.
I haven't been to one either and I mentally try but I just feel like everyone else is in a worse state then me and they need more support. It's odd I haven't been as I nominate my location cheaper ( Swindon UK) to be the charity of the year for the mall I work at and they have been accepted.
I think I need to do some research into "grieving the old me" and hopefully it can help me move forward.
Hi Lee, your more than welcome, it's good to finally have a space with people whom understand. How are you today? Better I hope.
I wanted to go into conservation but I can't even begin to dream of that at the moment so I've given up. Maybe I can pursue once I have been seen by a professional 🤔
After my initial time in hospital I was discharged under care of neurology outpatient, I had persistent vertigo so referred to ENT, then neuropsychiatry. I was discharged from neurology after a second MRI in 2021. It confirmed original scan results and that was it. I was telling them I'm still unwell but at no point did anyone mention or want to explore any other reason for my ongoing symptoms. I remained under neuropsychiatry till I was discharged last year. I started to experience missing periods, then they became regular but quite heavy & sometimes extremely painful, so the GP's I saw (no continuity) wanted to focus on menopause and didn't want to take my head injury into account. But before I could be referred to Gynecology they wrote to my neurology Dr to check I could receive hormone treatment due to my head injury 🤔🧐🤡. It was a joke. My experience of GP's has been pretty bad, as I've presented regular with my debilitating symptoms time and time again. I've been given anti dependent medication which I had to stop after 5 days because I experienced every side effect going, from not being able to sleep to my heart racing and many more horrible effects. Numerous bloods done, showing anemia (given folic acid). All the while the 'dead zone' would come and go. I'm still on pathway for Gynecology but I decided I need to see an endocrinologist at the brain injury hospital (Salford) as I want all avenues explored. Its been 5 years and it's getting worse not better.
You don't need to pay for an endocrinologist as far as I know, the NHS should still provide treatment without you going 'private'. I insisted I was referred as the gp was reluctant, trying to push me to stick on the menopause path. It really grinds my gears when they think they know better or dismiss you have knowledge of your own experience.
You should also insist a referral for neuropsychiatry too, you would benefit from it. You've had a life changing injury, they should be taking that seriously because you may have issues that do not appear for years after. It's easy for them to dismiss you, especially when your unwell because you don't have the energy to fight or easily pushed in the direction they want to go, but I'd just got to the stage where I knew it wasn't just menopause and wanted answers.
Your ex sounds 'nice', definitely better off out of that.
How were you diagnosed with the nerve problem? Was it your gp?
I think you should go back to your gp and request referrals for endocrinology or whomever is an expert on the nerves you damaged after your injury and also neurophysiology to give you support/understanding of your ongoing emotional journey and take it from there.
.... also have you considered looking into PIP? It's designed to assist people whom have daily living hardships and costs due to health conditions. You can still work as it's not means tested. I didn't even know I could apply till 2022, so was struggling on just UC (horrible)I was signposted from my local disability charity (I needed food bank vouchers) to a lovely bloke (volunteer) who spent 3 hours going through each question and with the official point system guidance book he wrote each answer for me. If it wasn't for him I doubt I'd have been successful. This government want you to suffer so they don't have to support you and your entitled to at least apply.
It's worth applying as there are two levels of award for the 'daily living' aspect of PIP. I didn't qualify for 'mobility ' because I am able to get about without any aids or assistance from someone.
Have a look at the government website:
You can get Personal Independence Payment ( PIP ) if all of the following apply to you: you're 16 or over. you have a long-term physical or mental health condition or disability. you have difficulty doing certain everyday tasks or getting around.
Hi LeeThis is a difficult thing to go through, that's for sure.
What you feel is normal under the circumstances.
At 7 months you are still freshly injured. Most healing happens in the first 3 years. Things do get better, just it takes time and you are rebuilding with a lot if uncertainty as to outcome.
A lot of people get really messed up by gabapentin, there are other things to try.
Calling Headway and asking for advice may also help - not just for yourself but for family as well. There are things for family and it may help your husband understand better than he does.
The stat for divorce after bi is something like 97 percent.
It's happening to you and that makes it feel horrible. And it is. And, it's also nothing you did wrong - you have had an injury and this is unfortunately not an unusual outfall. That's small comfort and may help a little if you get angry with yourself when you.arent able to be old you. That, unfortunately ,also comes with.
It's unlikely anyone would be angry if you broke your leg, but for some reason they are when you break your brain. People. Go figure.
Be kind to yourself and call headway to see what they cam suggest for you.
Lee, how would you feel about asking your GP for a change of medication ? Gabapentin isn't suitable for everyone and, although it takes time to transition to an alternative, you might benefit from coming off the Gabapentin.
Maybe have a talk with your GP about the possible options..
And do call the Headway helpline on Monday to see if they can suggest coping strategies. Their tel.no. is 0808 800 2244 during office hours. I see from one of your previous comments you were 'trying to find the courage to call them'....... they're none-judgmental and understanding, so please do.
Lastly, would you consider weighing up what benefits you're entitled to in order to stop work 'til you're stronger. Being a single mum whilst struggling with debilitating health issues is surely demanding enough at present.
A been 24 years!! B finally accept the TBI, the changes. Looking to my future, socialising at day centre again. Making new friends. Motivation to shower n go somewhere other than the paper / coffee shop to walk?! Recovery?! Certainly is trying!! Oh well switch washer to spin & put the kettle on against n?!! Good day n have fun
Lee you feel stuck because of a fear about social services and your ex husband. This fear is so anxiety producing and in your circumstances with brain injury, it is incredibly hard.
You have treatment and are getting on as best you can but really you are keeping your head down and hoping for the best. But really you are consumed by anxiety about your situation. This cannot be doing your condition any good.
The wonderful people on here have given you really good advice. Talk to Headway about your medication and possible alternative to ask the GP for- Headway phone line is staffed by medically qualified non judgemental specialists in brain injury who can be of great help. You can share with them the worries you have about your ex husband holding it against you if he finds out. Sharing a problem will help you feel better. Then you can visit your GP.
I guess it is hard for you to do this because you might feel stuck under a veil of symptoms. But do try and make these changes. I say this because carrying on as you are is very stressful and you might feel worse in the months to come. You have a lot on your plate. You need to invest a bit of time for you by seeking conversations/decisions about your medication and stresses.
Your children sound delightful and you sound like a loving mum. Let us know how you get on after your phone call and appointment. You can always speak to us xx
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