Hi folks. I'm currently in Uni and doing research for my master's thesis relating to my TBI experience. I came across a very recent study reviewing the history of sleep disorders following TBI and thought I'd share something that addresses insomnia which many people on here get (I had hypersomnia, excessive sleep). The only treatment that has any effect for insomnia following mTBI/PCS is 2mg melatonin.
Here's the paper. (Sorry I can't share the whole article it's copyrighted and would get me chucked out of uni if I did)
Stewart, K., Shakarishvili, N., Michalak, A., Maschauer, E. L., Jenkins, N., & Riha, R. L. (2022). Treating sleep disorders following traumatic brain injury in adults: time for renewed effort?. Sleep Medicine Reviews, 101631.
You could copy and paste it into a search engine to see if you can find it.
Hint paste it or the author into researchgate. You may find the author there. Many authors have their papers in the research tab for their work. If it's there you can usually download a pdf.
You can do this for many authors.
Another tip if you want to find scientific papers is to search 'google scholar', it has every published science paper. Some of them are published under creative commons and you can access the whole article.
The one I shared unfortunately is not available to the public (heaven forbid if people found the real research and started to tell their doctors that they are wrong!)
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pinkvision
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My uni journey has been really interesting and also an amazing way to rehabilitate all the functions required to study. When I started, I still had many TBI sysmptoms, I did not think I'd get through the first year, but the process ended up revamping my skills. 'You got to do it to improve it.'
Melatonin is an hallucinogen in high concentrations, which may explain the nightmares.
Your insomnia may be due to reasons other than TBI.
There is also a classification called 'circadian rhythm disruption'
(I was on a minimal dose of both the melatonin and the tryptophan - I tend to react so I take small doses of things to see how I do.)
It's good to treat yourself like a science experiment - with caution, of course. I do. It has helped a lot, particularly since I don't tend to tolerate medications or even some of the well studied alternatives well, or at all.
It sounds like most of us end up having to figure out what we can by guess and by trial.
(My sleeping has been off since the accident - was fine before. At the moment the issue is a bit worse as someone in the house isn't well and often needs help at night.)
Looking forward to hearing more about your discoveries, PV
I am with you. Indeed most GPs would not prescribe sleeping pills these days. I also go to bed when I need to and get up at really odd hours. I was trying to explain to a specialist diabetes nurse that I have no body clock since hospital interfered with my circadian rhythm. I don’t think she got it!
It was still a thing here , in the few years post in
jury - though I went through the options and they weren't for me. Now I just don't seek solutions for it.
The family doctor here seems to be a thing of the past, I haven't had once since about 2015. I think i saw somewhere 75% of people in my area don't have one.
how it works is you phone a clinic when they open and hope they have a phone appointment for that day. If not (which often haopens) you try tomorrow. The doc you get calls you at the time, and if they want you to come in they set it up. It is someone different every time.
If it is urgent there are a couple of clinics that can deal with stitches, sprains, breaks etc - anything big you go to the hospital. Waiting times are generally in the 8 to 12 hour range - and sometimes they are full.
so really, people here are generally pretty much on their own, most of the family doc's aren't bi literate and if you find one there is no way to see them again- they don't even tell you who works on what days and you can't request a specific person.
and, I only get treatment for things I ask about - generally they will only do 1 thing per appointment, so say asking for rx renewal is one thing, so it's a bit of a chore to get anything medical done.
I just heard about an online service I still have to check out.
Thank you PinkVision! I don't think medical people take these things seriously. I have been formally diagnosed with Exploding Head Syndrome (EHS) after my ABI and it's apparently classified as a 'sleep disorder' and even referred to as a 'phenomenon'. Doctors and my neurologist are completely ignoring that I suffer from EHS, no matter how terrifying it is for me and I'm really frustrated that it's not even in the mix even though it's a formal diagnosis. Any research on sleep disorders after a brain injury surely have to be taken seriously and I'm glad you are studying this. Oh how I would love to know the truth! x
Hi Bee, EHS seems to be another classification in sleep disorders. However it's being explained as a 'psychological' problem. This basically means they don't know what it is and want to classify it somehow.
Thank you Pink! No, I don't sleep well, it's often broken and haphazard but short of taking Quetiapine which the doc has prescribed which knocks me out cold for 12 hours plus I am learning how to live with it. They know very little about EHS and believe me it's scary as it feels like another burst aneurism when it happens minus the thunderclap headache and projectile vomiting. I have asked about a sleep clinic but they are ignoring me. I am under a decent neuro consultant now (about time!) so maybe he will consider my EHS as he is sending me for numerous tests for left side weakness at the moment. Here's hoping! x
I am ABI... burst aneurism and coiled plus 8 months after that I had a massive heart attack and was airlifted to hospital for emergency surgery... blah! x
Oh dear sorry to hear that, the important thing is that you are still here. I was wondering because the information I have shared is research from TBI. Strokes and other types of BI may have totally different characteristics and the research findings may not be relevant to them.
Hi PV... Different types of brain injury can share characteristics in my opinion. It all seems to be a 'grey area' but I know that Headway are doing research into how the brain actually functions aside from any physical changes after brain injury and for that, I am truly grateful 🙂 I was invited to attend a focus group online recently with Headway about aftercare that was very interesting. I am alive and a bit of a 'warrior' now! x
Something that I haven't tested out yet, is that apparently your local library has paid access to some of the research databases that ask for payment, so that might be helpful if anyone is interested and can easily get into a library. ( At least it is a quiet environment ..)
Incidentally, I did come across melatonin as an option, and asked my neuropsychiatrist about it, but he said something to the effect that I had the wrong sort of insomnia for melatonin. I describe myself as having no 'off switch' as I stay wakeful and don't fall asleep in the first place - used to still be wide awake at four or five in the morning on a bad day,. Now I connect it with being over fatigued most usually, and occasionally if I'm worried about something - but perhaps that's a more normal type of insomnia?
Certainly I need to put a bit of effort into triggering myself to sleep still, but this year found that old fashioned ' sleep hygiene' is now more likely than not to work for me - don't think it worked at all before. Incidentally I tended to get enough sleep once I did fall asleep, and still do usually, just at slightly random times.
I've always been a natural owl, but TBI brought an entirely different dimension to the sleep thing.
I shall read the research with interest.
This is the link to Pub ed abstract for the paper you mention, which I think might be one of the ones you can access from a public library
I see that the abstract states that research remains limited unfortunately. ( This study is a review of literature rather than the results of a large double blind trial)
There is research that melatonin can cause problems with regular use ( it is a hormone) so would suggest that it wouldn't be a good thing to self medicate on, by the way
Indeed, this paper while it confirms increased sleep disorders in over 65s post TBI actually mentions that many sleep medications are not safe for this age group to take.
The 'pubmed' link you shared is for the abstract not the research. The research brings together all the trials and compares them. The second study says it is the first study of its kind and requires further research.
As part of my research training at uni we were exposed to the reality of science papers, 99.9 percent of all science papers are flawed or biased. I found this quite interesting because people who use science are using unreliable information. Any objective science ie use of measuring tools are limited by the tools they use.
A good example are MRI and CT scans used for brain research and diagnosing brain injuries, they are unreliable because they are not sensitive enough especially in TBI. Since the ABI Bill science is now coming to the forefront which uses another type of scan DTI
It is far more accurate but not used as a routine medical tool. What they have been saying is that TBI's mostly do not affect the functional regions of the brain, the grey matter, but do affect the communicating regions of the brain, the white matter, (it's the same for many types of stroke also). TBI's cause axon injuries.
The difference in imaging technique and lack of DTI in medical assessments has resulted in neurologists, who mainly use MRI and CT, in not seeing the axonal damage and instead diagnose psychological issues such as depression and anxiety. The result is that the patients then start questioning their own sanity and this causes the psychological issues due to a feeling of hopelessness.
I'm hoping the ABI bill will change the whole system of diagnosis and by extension any rehabilitation that may be offered.
Yup -the abstract was for that paper you referenced in your post. As you say, you can't access the paper you mentioned from pub med without paying - but my point was that public libraries have paid subscriptions to these sites, so you can access stuff by sitting in the library, which you can't at home. I expect as a student you've got access to stuff re the uni library logins too.
Most papers suggest further research to be fair, the second link wasn't a bad size study though. The ones to take with a pinch of salt are those that only have 20 participants... Isn't a review of existing research called socratic research? It depends what the researchers' criteria are for including a study in their overview paper. If they exclude small studies and so on, it can give a reasonable guide. Worth checking who did the research too
The whole 'nothing shows up on the scan'' thing is problematic as you say, and leads many of us to doubt our sanity.. Though the team that my neurologist referred me to seemed to have no doubt that my PCS was organic - for want of a better description. I think you're right that the improvements on research tech have changed the landscape since about 2014. Though historically neurologists were always divided into two camps on MTBI - one side saying it is physical, and the other that it's a mental disorder. I suspect the treatment we get depends on where a neurologist trained and with who, and how recently?
However I will say that there is relatively new research out there that SSRIs and SNRIs do have an actual therapeutic effect on the brain in brain injury ( aside from the depression aspect) so will say that just because you may be prescribed an SSRI it doesn't necessarily mean that the consultant thinks it's 'all in your mind'.
Yes agree very much on your BI team. There seems to be a big difference across health authorities and also at the devolved level. My health authority does not have a neurology department, patients are reluctantly sent to Liverpool only if they have a positive MRI or CT scan. All other BI related symptoms are considered psychological.
I did not have depression etc with my TBI but remember coming across some info that suggested antidepressants were problematic for TBI, can't remember the details though. I did find this recently that the antidepressants you mentioned did seem to have good effects but they greatly increased the risk of having a stroke. Here's the link for the abstract scholar.google.co.uk/schola...
Many thanks PV - the sleep has been disrupted and erratic but I have thought it was due to being overtired. Did not know much of the above. Maybe there is more to it than 'oh, its just me' - now will be reading, and mentioning it to my neurologist - first meeting pending. This has been most timely.
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