post concussion workshop

[Juventini]

hi,

I recently joined a practitioner workshop for post concussion syndrome and found it really helpful to understand my issues, potential causes and where I should look for help. Link below.

It also stated, nervous system dysfunction should be one of the first tests as if this isn’t fixed it will prevent vestibular physio etc to fully work which I think is what has happened to me.

below is the workshop in Facebook link, company is Complete Concussion Management based in Canada. You may have seen their YouTube videos. After the workshop and a few days later I was then given a free trial which goes into more detail

webinar.concussiondoc.io/s/...

Some screenshots below which I found useful

[Juventini]

image

PCS treatment flowchart

[Rosebud66 in reply to Juventini]

I tried a post concussion course based in Canada, but I couldn’t access the Buffalo treadmill, as my diagnosis was late ( I didn’t know what it was until half a year later, so I never got the concussion checked). I missed out on everything like the above. I’m still with symptoms 3 years later. I’m not sure I’ll ever recover. The reason I never went to hospital was because I didn’t pass out. I didn’t know you could get a concussion and not pass out. And I was on holiday. I feel so strongly that we all need to know that just because you don’t pass out doesn’t mean you don’t have concussion. Why don’t we know this? I went down with migraines from then on… but again didn’t know what was causing the migraines. I’ll never get my life back now.

[Painting-girl in reply to Rosebud66]

Yes, I only knew about the not passing out thing with concussion / MTBI from having one previously where the symptoms only lasted a couple of weeks. Plus the symptoms don't start all at once, there's a cascade effect over a few days.

I know you've got that awful chronic headache Rosebud, have you ever had cervicogenic headache from the nerves at the base of your skull, oculomotor and vestibular issues ruled out or treated? Plus the Buffalo treadmill protocol can rehabilitate your autonomic nervous system byb exercising at a sub symptomatic threshold and building up. All contribute to chronic headache post concussion.

[Rosebud66 in reply to Painting-girl]

I agree, my frustration is that I have never been offered anything by my doctor or the two neurologists I have seen. I don’t have health insurance and I have spent so so much money on private Botox, Vydura, private neurogists, chiropractors, physio and I honestly don’t know how to access anything, not even a neuro psychologist. I feel so badly let down by the NHS. The first appointment was for a year’s time and I had a migraine that never went away and life still is hell. Sorry to rant, but how do you access any post concussion protocols and is it now too late anyway?

[Painting-girl in reply to Rosebud66]

Sorry things are still so rough for you Rosebud. Not surprised you feel let down. Sounds a nightmare. My people were private too. I don't think it's ever too late, we seem to carry on improving even if the speed of change slows down. There's just a dearth of research over 3-5 years. The NHS should let you have a second opinion I suppose? I'm not exactly sure what the next move is when it all goes wrong, Is finding the right medical help anything that Headway could help with?

[Rosebud66 in reply to Painting-girl]

Yes, spurred on by my annoyance I did try to phone, then email. I might try again tomorrow as I expect they’re very busy. Thank you x

[Juventini in reply to Painting-girl]

I have contacted Headway a couple of times via email and left a message when calling. I can’t remember exactly but think they got in touch after a day or two

[Rosebud66 in reply to Juventini]

That’s good. You’ve got to have hope..

[Juventini in reply to Rosebud66]

Luckily I used my wife’s work policy for the cardiologist.

I must have been fortunate at first, I originally just went to the GP complaining about tinnitus and just thought I was unwell because it was a big crash. But after telling them I was sick all day and sick in the hospital before leaving he referred me to the head injury unit.

I would maybe at least try your GP again. But I saw a neurologist once and was told I didn’t need them even though I complained about issues, they said I would be fine in a few months.

maybe I’ll learn more once I see the private neurologist so I’ll let you know. My solicitor said the nhs support is good before you are discharged but once you are sent home you are kind of left. Even the vestibular physio is basic from what I received. YouTube has loads more exercises which make me feel sick but nhs said I should be fine.

[Rosebud66 in reply to Juventini]

The truth is they don’t understand long term PCS. Feeling sick is no fun. I hope your neurologist gives you more understanding. My first neurologist told me, after 6 months they’re not allowed to call it PCS. Huh?! The second told me no-one recovers from brain injury that he knew. Oh boy, I just took both with a pinch of salt …

[Juventini in reply to Rosebud66]

Sadly I had to raise a compliant as they said I should be fine now so it can’t be mTBI. But another consultant told me two years recovery so they contracted each other.

I think I made another post about the complaint as it was recent, just too draining to go through it again

[Rosebud66]

Hi Juventini, it was exactly this webinar, I did the course but gave up. For a start Dr Cameron didn’t believe in chronic migraine and then the guy who discusses food didn’t try to help when I emailed to say follow his diet because I had gastroparesis. They tend to refer you to a local naturopath. Finally, they said I had to be doing diet, meditation, exercise, and various other therapy all at once for it to work. So I gave up..

[Juventini]

oh, sorry to hear it wasn’t helpful. For me, it’s helped me understand more and also given me more hope the cardiologist next month will help confirm or rule out dystonomia.

I didn’t start any treatment until after two months and this was then only basic vestibular physio and occupational health for fatigue management.

I saw on YouTube about the buffalo method so tried exercise but overdone it and triggered symptoms instantly and hugely. I was then show by the nhs this method but 105 hear rate was my level and I breached this just walking etc but when I told them no further help was given.

I’ve stagnated on the vestibular exercises since April. Stuck on the brock string.

I read about the brain diet, but it’s hard as I can’t multi task and too cook new recipes isn’t possible. So with just eating basic food in the oven or making pasta which should be avoided I’ve struggled, even without a medical issue around food.

My neck has also never been looked at, the vestibular physio said I have neck propreception and I think stiff c1 and c2 and did manipulation twice but then I was discharged saying they had done everything they could.

So I’ve just been trying to research as to use my private insurance I need referrals and only had a set limit for consultations so didn’t want to waste on areas not needed. But solicitor has just organised a neurologist for next month so I’m hopeful again.

My accident was August 2023 so it’s been a long journey!

[Rosebud66]

Yes, mine was 2021, I have to just take it one day at a time… exercise is hard and I have a dog. Wall Pilates has been recommended because I couldn’t manage yoga! There is some concussion yoga on YouTube so I do that sometimes. Now I think, a halfway active day = rest day afterwards. I’ll be honest, cold water swimming has been my saviour… it does something chemical or electrical in my brain and reverses the anxiety…but I just know something isn’t right in the back of my skull/neck. It was an interesting course re the nervous system which is why the swimming helps balance it. Weird! Might help you when it’s a bit warmer?

[Juventini in reply to Rosebud66]

Post concussion syndrome assessment issues

That was the title, also made a follow up for pals advice.

NHS said they will come back to me by early Feb once they have reviewed everything

[Juventini in reply to Rosebud66]

Didn’t mean to sound blunt, I’m still recovering after Christmas seeing family, going to the cinema and then the pantomime. Taking a while to recover and due to over doing it, senses are on edge

[Juventini]

I might try swimming, didn’t realise it helps with the nervous system. My exercise tolerance is shocking so I’ve just stuck to walks. I live in the north and people do currently still go in the sea for health benefits, I just can’t comprehend it just yet!

Going out in the cold impacted my symptoms, once the weather changed I noticed my symptoms came on quicker when I went out and then coming back into the house to warmth doubled up the impact. I bought thermals to try to balance it out so I didn’t have such a shock going out.

I’ll probably debated a cold shower for a few months first 🤣