Post concussion syndrome is Largely migrainous in nature

[Angostura]

Post concussion syndrome is Largely migrainous in nature According to the latest findings: So said my PCS expert neurologist when I asked him to tell me the difference between post concussion syndrome and the vestibular migraines I experience daily following two forms of vestibular damage after a TBI. Therefore PCS is largely physiological. Has anybody else heard this? If it is indeed the case then I would presume that everybody with PCS should be referred to a vestibular consultant for the kind of tests I had. Although my life is absurdly constricted at the mo by a ‘Two mildly cognitively challenging activities a day’ order from my consultants, as a means of reducing the brain irritation caused by the vestibular damage which lead to the migraines, at least I now know I’m not going mad!

[Feebie8]

Ehh ooohhh I'm not sure if I agree with or believe this is accurate 🤔 I've had migraines since I was a kid. The typical migraine I had before I hit my head (a year ago) was blind spot warning in my left eye which progressed to a rolling barcode covering the whole eye (if I didn't wake up with it), terrible headache, vomiting and occasionally diarrhoea. It would put me down for a day then I'd be fatigued for about two days later. I did loads of trigger tests, avoiding things just to come up with zip!

I haven't had my "typical" migraine since I hit my head. Seeing as I've had both I dont think grouping PCS under the migraine umbrella is accurate or helpful. I think it's just an attempt to fob you off cause they don't really know the difference between them at all. It sure doesn't explain the physiological stuff I've had to put up with from hitting my head, it doesn't explain the vision problems, anxiety, balance issues, nausea, cognitive slowness, memory loss and whatever else I now suffer from that escapes me, none of which I suffered with before I hit my head...! I was a clean eating CrossFitter who had to stay in bed now and again, I'd take my typical migraines back in a heartbeat 🤷‍♀️ 🤷‍♀️

[Angostura in reply to Feebie8]

I hear you, and your pain and empathise fully. What I’ve been told is that the daily migraines I have are vestibular in nature, as opposed to standard migraines, caused by brain’s electrical activity as it tries to compensate for vestibular inability to establish balance - the heightened electrical activity causes visual, hearing probs plus cognitive diffs, nausea, dizziness etc.. as the brain becomes more irritated ie the disabling symptoms are not created by my mind but by my brain. As you know the ‘old school’ neuroscientists like to suggest PCS is psychological rather than physiological. What I’m also learning is that migraine is a pretty vague term given to a whole raft of symptoms. I’m off to see the migraine neurologist so I will ask him/her to explain further and will report back...

[Feebie8 in reply to Angostura]

Yea PCS as psychological 🤔 what an insult! I would have loved to have some of those folk present when I couldn't coordinate my body to get out of bed or when I forgot how to tie my boots 🙄 To get an explanation that confirms to yourself you are not going mad is such a relief. Physiological response to vestibular migraine I totally get that, it makes sense to me. Maybe the PCS expert could have said that your experience of PCS is largely migrainous in nature not encompass PCS as a whole. Please do. Hopefully the migraine neurologist can explain and elaborate on the differences for you. If you're anything like me you'd definitely welcome specifics with objective detailed information instead of constantly hearing speculation based on other sufferers symptom reporting. Good luck 🙏

[cirrus]

Hi.

Thank for this info. I am going ot try to read baout it.

I also sustained vestibular damage when I hurt my head which took them years to bother to test for but csue me so many probems, and have migriane liek symtpoms so often and especially when trying to think or write much - then its like my brain just starts to melt or fizz quietly (bringing on some kinf migriane or other effect) and I cant think. It is defitnely NOT anxiety or psychological. In some ways I can agree that a large part of my PCS seems migrainous and the extra tasks of compensating for lack of balance but also it defiently takes away from proper executive funtioning and those kinds of 'high function' abilities that most jobs need, even norml life.

I read somehting about glucose cascade or hystamine somethig like that when a brain experiences physical trauma like imapct and that can be similar to the process in migraine, or something, I can't quite remember becasue of the head injury and PCS!! it is worth trying to read about maybe. Please forgive my rambling incoherence, I have not been awake long and my brain is so tired at the moment.

I had no help after my injury, just a few docs saying what's the problem, so I tried to be normal and it made reocovery so much harder. But eventually it got so hard and I went bakc so mcuh that doctors started to listen I now I do less and slwoer and I'm OK with that. Happy to strugge less!

So orry this is hard to read but wnated to join in. Argh, our poor brains! x

[AndrewT]

Dear Angostura,

I'm half Tempted to say 'Poor You' and half tempted to say 'What A Load Of Bo..ocks!'. At the VERY least, this 'Statement' Is rather Sweeping.....Bearing in mind that Every (single) Brain Injury is Unique, that's right, No two are EVER the same. I'm beginning to 'Lean Towards' to BO**OCKS idea myself. Can I ask a few questions please?

Firstly have you ever had a Brain Scan, since your injury. If so, have you had a Follow Up? I could be wrong here but, I suspect, neither. Have you ever had, initially or afterwards, any 'Form' of Cognitive Assessment- or Therapy? Again, apart from a 'Cursory' initial 'Check Up', I doubt it. (So unless I'm completely wrong here, IF I am....Then I'm Sorry and please DO Dis-regard my 'Ramblings'......Still 'With Me', thought so!)

If, and it is Fairly BIG 'If', A Brain Scan 'picks up' a Problem maybe, just Maybe, a 'Medication' might help you.....Yes a 'Long Shot' but you never know, unless you try. (Not quite the same but....An old Girl-Friend, from some years back, had her Medication changed- by a New GP- (She has Mild Epilepsy) and Really Suffered, until her actual Consultant changed it back.

Can you ask, maybe your own Doctor, - or perhaps a Consultant- to Check your Medication. By all means explain your Symptoms. Don't be afraid to, ask for, a 'Clarification' of your Condition and, quite what, your Medication Is 'Doing' to/for you. Neither, of these 'things', if Politely ASKED for are, in any way, unreasonable. You never know, you might get some answers- if not you will have a whole 'New Lot of Bull SH*T' to Mull over!

Sorry that I can't, offer you, much Comfort here Angostura except, to assure you, that we are ALL here, for you- at ANY time. Please DO contact us again.

Very best wishes, from us ALL

AndrewT

[Angostura in reply to AndrewT]

DearcAndrew, I think you may have misread my post. I am not myself asserting that PCS is synonymous with vestibular migraine caused by damage, I am Simply repeating what the neurologist who specialises in PCS said to me And asking if anyone had heard the same.

In answer to your questions: I have had to Two MRI scans And follow ups showing no grey matter damage, Vestibular testing which showed vestibular damage, have for several months seen a neuro-Psychologist and am on the early stages of medication (and on asking for clarification - In the same way that I see clarification on all diagnoses - heard that it is still too early to see if it will make a difference - although it helps with sleeping).

I wouldnt dream of asserting that all cases are the same - how could they be? I was simply asking if anyone had had a similar diagnosis/has any further information on the link between PCS and Vestibular Migraine.

[cirrus]

Hi all. I can’t type much today and I know this is an old thread, but I have Ben looking into disruptions to acetylcholine (a neurotransmitter) at and after tbi could account for many PCS symptoms. Lots of papers about it but somehow the NHS consultants I have seen prefer to blame psychological cause which I also find insulting and disheartening. I think acetylcholine offers us some answers.

I also have vestibular damage that went undiagnosed for many long years due to it being blamed on anxiety. And do get migraine like problems. It’s been too much of a struggle to get help.

Best wishes all