I understand that there comes a time to accept your new you, when you know you won’t get your life back. But can anyone understand the problem if your new life is daily chronic migraine, which after three years is unrelenting. The neurologist has just told me there’s likely to be no change. He also said they were likely to get worse as the brain shrinks as you get older. I’m late 50’s. I asked him if he’d ever seen anyone improve with brain injury and guess what? He said, no he’d never met someone who had recovered or even improved with brain injury. I am so disheartened by this, so demoralised and I can’t help feelings so angry at the way life has turned out. Anything but not this endless day and night cycle of migraine. Just wondered if anyone had any thoughts. And another question- what actually happens to your brain if you get hit on the back of your head hard? Sorry, just feeling at the end of my tether right now….
rant!: I understand that there comes a time to... - Headway
rant!
Oh, your doctor is so full of bs. I’ve improved every year for the past 30. I suffered extreme hypoxia for 30 minutes, and couldn't walk for 4 months. I ran a 27 minute 5K in the summer of 2019. My cognitive therapist told me my memory and cognition would never improve. I am now rated 720 playing online chess. Improvements may not happen at the rate you want them to, but they will always occur. Dead neurons can’t return, but new synapses can grow at any time. It may take 5 trucks a little bit longer then 10 to transport goods across a country, but they can do the job just fine. You just need the roads. That is what synapses are.
Hi RosebudThat doc is absolutely wrong.
I am about 16 years post now.
I get better all the time.
Yes, I work at it, I find my weaknesses and challenge them a little at a time.
It took 8 years for me to not tremor many times a day. I used to fall if the neighbour started the lawn mower, or some other loud noise happened.
It took 10 years before I could go some places without a walker.
And I had a headache that felt like a pipe was sticking out of my head for, hmm, maybe 6 or 7 years. I couldn't get out of bed some days - just stay put and try not to move.
What actually happens when you hit the back of your head? Your brain is the consistency of congealed oatmeal. The inside of your skull has boney protuberances. When you hit your head the brain hits those, maybe your skull - you have seen water slosh in a bowl- sort of that idea. It gets bruised, and inflamed. Neurons have a head and a long tail, part is in the grey matter and part in the white matter. Inflammation melts the tails (this takes about 3 months or so.)
Your brain is injured. It heals differently than a broken leg. It has to build new connections.
You will heal, too.
Do make sure you eat healthy fats. Your brain is composed of a lot of fat. Get enough omega 3's as well.
Try eating cold stuff when your brain hurts.
Also see if you can find some .myofascial release therapy.
This part you are going through now majorly sucks.
Try things and see what helps - look for small things. Don't rely on the medical system , look for things on your own. Some medical people are OK and a lot of them are clueless.
Eat well, rest well, find little things that give you a bit of comfort and be kind to yourself.
(If it helps, the specialist I had told me healing keeps happening. )
Big hug to you.
Leaf
Hi Rosebud, what a journey you're having.
My interest was spiked with your description of chronic migraine following trauma to the back of the head. I don't have TBI (or any medical training whatsoever), but know something about head/neck trauma and migraine, also about intracranial pressures. Long story that is mine and of no interest to you.
Has your specialist established the pressure(s) of the cerebrospinal fluid (CSF) in your head following your injury? Fluid pressures can differ from one side of the brain to the other. If the injury has caused vascular damage somewhere in your head/neck, there might be a blockage that's interfering with fluid drainage through the jugular veins. A blockage can result in increased pressure and chronic, agonizing headaches. A leak through the membrane that contains the CSF (brain to base of spine) can have a similar effect in terms of chronic headache that will be much worse standing up than laying down.
Following a comprehensive cranial MRI venogram (takes almost an hour) to identify any blocked vessels, you'd need to have either a lumbar puncture to check the general CSF pressures or a cranial venoplasty (tube into the groin and up into the head) to measure the specific CSF pressures across the brain. That procedure would be done by an interventional neuro-radiologist.
It might be worth at least discussing this with your specialist, and/or seeking a second opinion regarding your cranial pressures if you haven't already been told that they're within normal parameters, i.e. no blocks or leaks indicated. I suggest either Richard Mannion (neurosurgeon) at Addenbrooke's hospital or Laurence Watkins (neurosurgeon) at Queen Square in London. Under NHS 'choices', you have the right to choose where you go to have your cranial flows checked out via a second opinion.
If you are insured and/or can go privately, you would be seen quickly by the specialist that most appeals to you and is conveniently located. Be advised, these procedures can cost upwards of £7,000 privately.
I hope this info does not exacerbate your frustration and that you're able to obtain the support you need from whatever source.
All the best for your future, which in my opinion cannot be predicted to 'not improve' by anyone. The self-healing capacity of the human body remains much of a mystery to all, including specialists, especially when it comes to the brain. Only a foolish medic would assert otherwise.
I was told by my neurologist that as I don’t have much pain standing compared to lying down it was unlikely to be a CFS, which would be the leaking fluid and require a lumbar puncture. Nothing showed up on my MRI. I have been turned down by specialists in London and Leeds as I am out of area and my GP is fighting this. But I can enquire again. I unfortunately have no savings left! Thank you so much. I do, if I ever see a neurologist again, I will ask those questions!
I feel desperately sorry for your situation. Nobody should be left to endure what is basically chronic pain. I hope you can take on board bridgeit's suggestions. But I second the others, my husband fractured the back of his skull 5 years ago and he continues to improve, very slowly, after bring told there's no improvement after 6 months. Another member on here, Pinkvision, made practically a full recovery. Don't give up! X
My daughter had a major contra coup in a rta, front right and back left 12 months ago. She started with daily migraines with colours after 9 months. Aspirin and sleep help or Sumatryptan if not able to sleep. She has paracetamol and occasional codeine daily for other pain as well. Her neurologist recommended trying first magnesium (helped but not total relief when stressed)then vitamin B1 (riboflavin). After a lot of stress this week she has been migraine free touchwood! Discussed this with her physio who said B1 worked for his daughter’s migraines too. Not scientific proof with a sample of two but I’d recommend you try it. The worst downside is bright yellow wee.
Good morning Rosebud
I think those before me have already given you some good advice.
The doctors and all the other medical people around me from time-to-time over the last 26 years don't really understand, not one of them has actually had a brain injury. Mostly I have ignored their advice and gone ahead as my body has allowed but always kept them as on-side as possible, there are some areas where they can smooth the path (though usually they have to be pushed hard).
Regards the headaches mine may not be as bad as yours, could be worse, but after 26 years they are still there. Goes round on a cycle like the fatigue, I hate it and think it really shouldn't be happening but mostly I have learnt to ignore. Every time I have pushed them into doing something it has always ended in the same place, neurologist or whoever prescribing this smartie or that which changes nothing and I go back to my "ignore" prescription - I hate taking anything at all unless I really, really, really have to.
By the way, in my opinion it's not about accepting the new you, though that's what they tell us. However I do accept I have limitations, I always did, but I look for ways to go beyond what I'm supposed to be able to do and usually manage it in however small a way.
Stay optimistic
Best wishes
Michael
Your doctor is talking rubbish there is always hope for improvement. when I joined headway, I didn’t understand what was wrong with me because no one had explained to me about the effects of the brain injury. They sent me information on strokes but not on brain injury so I started to read all the information that people were putting on the site, I find it to be so helpful and I began to understand why I was feeling the way I was.
Migraines, have you asked your doctor for propanolol? They’re very good for migraines has your doctor sent you to see your dietician ? like no chocolate or cheese or coffee.. if you start to look into it, you’ll find many ways you can help yourself. go and have a massage, especially on your neck shoulders and back. Gentle music can help. Don’t think negatively.. I’m suffering from foreign accent syndrome now at first I hated my voice but one day I felt that God said to me embrace your voice, it’s not easy. But I tried so hard also my leg is now deformed, if there’s no bone density then the option is to have my leg amputated, I’m looking at the positive but there will be enough bone, but if worse comes to worse then my leg will be gone and I will not have any more pain. I’ve now bought a wheelchair so in my home I have an electric buggy, wheelchair, crutches, and sticks if anyone needs anything I’ve got it. I am trying anything and everything.. try to keep positive I am sure it will work for the benefit of yourself. GR 33 is correct. Your doctor is full of BS. Don’t know what it means. But it sounds good. God bless you love Liz and Shelly.🙏🤗🇬🇧
don’t give up trying .. no one knows how well you will improve or not improve .. help is what these Drs need to do .. and that includes moral support .. yes they can say it may not improve but also that some people do improve .. for your headaches try pain management which is available on the nhs .. it trains you to visit the pain and embarrass what you are feeling by actually thinking about the pain .. it does work plus try head space app about meditation which is also amazing on your stress levels which actually if reduced does help with pain .. I’m new at all of the meditation side and am gobsmacked at how much better I feel .. my body isn’t ridged with tension .. all no miracle cure just learning to use our bodies to relieve anxiety and stress something that we have lost the ability to do though time .. .. dig deep as you do have the tools to improve your new wonky brain and if it doesn’t come back to the old you There still is a nicer path to be on. .. Sue x
We grieve for our old selves, and like any grief it isn't linear. Sometimes you're ok and sometimes you're sad and regretful.Have you got one neuropsychologist that you get on with and can carry on seeing? They do help a lot with strategies to cope, and the emotional side. I think mine helped me immeasurably.
I think as others have said here - change your neurologist now. Do some research and find one that's interested in post traumatic migraine. Things have improved for me out of all recognition from the early days with rehab and time (six years in now) but I still behave as if I've somehow acquired some version of ADHD, and my organisation and planning is idiosyncratic, to say the least. But I do function, I can socialise - and crikey weren't any conversations tortuous early on? I think new things improve when you least expect it . I remember when my typing suddenly sped up - that was weird. I couldn't write down a telephone number before, because I couldn't remember each number long enough to write it. Now I take it for granted again - except when I notice and give myself a little pat on the back for doing it. I couldn't read for ten minutes, and couldn't hold the plot and characters in my head. Now I can do whole books, particularly in quiet calm rooms. I go to painting groups and lessons - sometimes the lights in the rooms bother me, but I can hang on for the two -three hours.
I don't take planned breaks now - probably should, because sometimes I just lose time because I'm not moving off the sofa instead - not ideal.
I think one of the issues around recovery is that there are very few long term studies on function generally. So we just don't know. Also one brain injury is just that, one - they're all different, and have different trajectories. I think someone treating me said improvement is slower after three years - but I have had noticeable significant improvements since.
I am challenging my planning, organisation, and light and noise tolerance to the max shortly, as am going to see how I do in my first holiday flight since my injury - my fingers and toes are all crossed. Getting a bag packed will be an achievement but I think I can do it, even in a circuitous fashion!
Brains - with blows to the head - my understanding is that our brains are like jelly and a blow moves them sharply against the fixed hardness of the skull - so even if there's no visible damage everything goes a little haywire from the shockwave effect.
I know all this is incredibly difficult for you because of the continuous pain from your migraines, and I really feel for you.
Sometimes several different factors are involved with post traumatic migraine and you need to find someone who can pick them apart and treat each thing that's going on. Take care, virtual hug from me x
Oh my goodness, good luck with your holiday! Believe it or not I have had no physio, no neurophsychologist, no OT, nada. Our postcode somehow doesn’t match any hospitals. I would love anyone neuro to help me, but have been turned down. I might need to watch more YouTube!
Can't believe you haven't had any support - that's not good. Is it worth a chat with the Headway helpline to see if there are ways to get support and what options you can talk to your GP about - I think everyone's entitled to a second opinion for example.- and you mentioned in an earlier post that your GP was trying to get you further help. Pinkvision would have reminded everyone that there are now guidelines in place for brain injuries. Good luck.
Yes, my GP can’t understand it. Maybe low staffing accounts for this let down?
Maybe lots of this sort of stuff was a bit of postcode lottery even in 2017 when I had my assessment/rehabilitation which was quite some years after my brain injury and took a year or so.
Do you have a local headway group in my experience they are good at knowing what you can get, and who to ask.
Mine told me what to say, and offered if that failed they would come with me to the GP and cause a fuss!
Certainly should be referred for the migraines which absolutely may not be a fix for but at least explore the options!
There's a very helpful commentary and second section written by a neuropsychologist (Frances Vaughan) in a book called 'Mindfulness and Stroke a personal story of managing brain injury' by Jody Mardula and her neuropsychologist Frances Vaughan. (I ordered it from my local library rather than pay online for it.). The mindfulness element was because Mardula was the director of mindfulness studies at Bangor university when she had the stroke. It won't all be applicable to everyone, but it did ring quite a few bells with me. And the commentary is very enlightening - gives an insight into what a neuropsychologist looks at.
Yes, I could look at that, thanks!
Hi Rosebud
Wanted to say, as others are saying, recovery is such a multifaceted process that is ongoing. Don’t give up hope at all! Neurologists have their job to do but they do not have all the answers. Not by a long shot.
I’m seven years in - although I did only acknowledge I had brain injury 2 years ago- and I’m still finding solutions and making changes.
Right now I’m dealing with vestibular issues - balance, dizziness, vertigo - alongside other brain injury stuff, in particular THE.WORST. vestibular migraines.
(Do you know if this type of migraine is what you have….? Very common in brain injury)
I was referred by a vestibular physiotherapist to Vision Therapy.
(By the way, have you seen a specialist vestibular or neuro physiotherapist which you may be able to get through NHS or insurance if you have?)
Vision Therapy - is not yet available on NHS but now becoming routine to have as part of the core rehabilitation team in the US for brain injury cases. They look at how the nerves affect vision following brain injury.
Also, the overall impact of trauma cannot be underestimated - emotional, psychological, mental as well as physical - on the overall nervous system, particularly the vagus nerve which is a huge nerve that connects the brain to all the internal organs of the body and so has a huge impact of all other systems in the body. If the vagus nerve is over or under stimulated, this can cause havoc - as it’s part of the parasympathetic nervous system which we need to ‘rest and digest’, so basically we need the vagus nerve to be just right, not over or under stimulated, to be able to relax and stay calm. A very clumsy simplistic explanation but the vagus nerve is key in assisting our recovery.
Books that explain better how Trauma is trapped in the body and affects the body are Bessel van der Kolk’s The Body Keeps The Score and Peter Levine’s In An Unspoken Voice.
I hope to share more of my experiences re vision therapist in the future, as I’ve started treatment. Also, I’m about to start work with a functional neurology specialist as it was found I have PTSD, which I’m sure many of us on here have experienced or are experiencing since brain injury.
My nervous system as a whole is just so shut down. I feel that PTSD isn’t recognised nearly enough, with many medics still only attributing it in cases of terrorism, abuse or military veterans. But to me, it is real and it exists in many of us. BUT there is always hope!
Good luck Rosebud. Hope you’ve found something useful in my ramblings.
Don’t give up hope and don’t let ‘em get you down!!
Tx
I meant to say there are plenty of vagus nerve meditations and breathing technique videos on YouTube if you just search for vagus nerve meditations. Yoga nidras are great, basically you just lie there while someone guides you in a soothing voice to breathe in certain ways, and relax different parts of the body. Highly recommend.
I feel your pain and am with you.
Tx
not true, 8 years on I continue to improve, yes it’s slow, but I’m doing far more than they said I would. No speech, terrible fatigue, headaches, migraines, sensory overload and processing, I now have volunteering roles, I’m a tour guide, yes I have to manage what I do and have rest, but it’s possible to reconnect some skills again or even learn new ones. You are not defined by your limitations, you are defined buy your endless possibilities. Never think things it, yes you have a brain injury but there’s much much more to rediscover, don’t give up. Some days you will fail. But take the small achievements and build on them. Learn to manage your condition, the headaches will ease, but learn your triggers and get good pain relief. There’s so many possibilities.
THC?
Hi,
Grr -what a crass statement! I wish people without brain injury would take time to try and understand the aspects before they make sweeping statements! Things are forever in progress and there is no limit to change. Unfortunately when the medics run out of standard ideas, we have to take up the mantle of our own rehab. It’s hard, but definitely enabling.
Keep being as positive as you can, keep researching, keep trying new options.
Good luck.
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