Hello, I have had 8 concussions some of which I do not remember and have had a continuous headache and post concussion syndrome for the past 9 years without ever finding any real help or coping strategies.
I mainly just want to know I'm not alone and if anyone has any advice regarding treatment or doctors or places to reach out too for help?
Thank you
Hello J
Welcome to the forum, and so sorry to hear about your post concussion syndrome, and that you've had no support all that time - it sounds rough.
Ask lots of questions, you will get a lot of support here 😊
A couple of questions if I may.....What sort of symptoms are you dealing with at the moment? And how did you come to have all those concussions? It sounds like it must have all been quite bewildering at the time.
Have you ever chatted anything through with the Headway helpline? You'll find them on 0808 800 2244.
I'm here because of post concussion problems too by the way 😊
Jen 🌸
Hi!! Thank you for replying,
Symptom wise I have a constant headache all day everyday, and I have since my first concussion. I have memory problems, like gaps in my memories that have appeared. My processing ability, especially in conversation is very slow. I've developed problems with hearing (tinnitus) as well as having struggled with depression and anxiety after the brain injury.
I have dizziness and I go through these weird periods of insomnia then hypersomnia. My ability to focus has gone down and I am still unable to sit at a computer or read for any extended amount of time without symptoms becoming extremely worse regarding headache, dizziness, nausea, balance etc.
I am still quite teary, and I've noticed myself becoming more angry more often and more quickly. And I now know I experience executive dsyfunction from the headway website and its list and explanation of symptoms after a head injury.
As to how I've had these concussions the first few were from sports and PE (as my first few happened while I was kid). And as I had more concussions it becomes easier to have another one, so the others were mostly from accidents like standing up into things and falling and hitting my head on things around the house.
And I have not called the helpline yet, although I am very much considering it.
I hope recovering from your post concussion problems is going well!
Have to take it one day at a time
Thank you,
jdnhgn
I also forgot to mention fatigue, but as it's a daily thing functioning while being exhausted is something I've become used too 😅
Hi J - yes, I can certainly recognise all that - except the tinnitus, but I know from reading people's posts here, that is pretty normal too.
When did all the bad symptoms start for you? I was ok (after the initial week or two) after my first concussion - it was the second one that caused all the post concussion symptoms (and no, they really don't all clear up in three months, six months, a year.....and that is also perfectly normal too - as I finally found out from the various neuro people I've seen ....)
How have you managed without support? It sounds rough.
You can get help with the headaches - for me it was a bit of trial and error - and it was eventually a mixture of physio on my neck, coaching to manage my fatigue, and actually an antidepressant (SNRI) in combination. They can still come back if I'm under pressure - but nothing like they were originally. Even things like Botox are an option apparently.
I've had a lot of medical support/ rehab since what was my second concussion, two and a half years ago. So I've been lucky in that respect. And on good days can say I've come to terms with it. Just recently had a fall though, and have got quite dizzy and queasy again, which feels quite tough to deal with at the moment.
What does your GP say?
Jen 🌸
managing has been rough especially at first but after the years you just get used to the pain and other symptoms
the headache I've had since my first concussion, but the rest didn't really start til after my second concussion, like you.
I've tried diff medications, physical therapy, nerve blocks, I've even gone to the chiro (my spine and neck had been moved after getting hit in the head so many times)
so far chiro is all that has helped, not the headaches but the overall feeling of my body (if that makes sense)
I've just moved so im in the process of getting a new GP and a referral to a neuropsychologist so hopefully I'll see some progress soon.
Dear jdnhgn'
First of all.... Welcome, to our 'Friendly Forum'. I know that I speak for 'Us All', when I say, that you are 'In' the right place.
I have, one or two, suggestions for you- Covid notwithstanding. Firstly 'Headway' is a National Organisation, for anyone who has suffered a 'Brain Injury'- of any kind. Ordinarily I would suggest you contact the Local library, or Walk In Centre. However at the moment, and since this is necessarily 'Difficult'- you might try 'Going On Line' to find a Phone Number. I think that, you do have a 'Good Chance' of Contacting Someone. ('My' Headway, for example, has it's Phone Numbers 'Transferred' to Staff Phones.)
Secondly DO, by all means, 'Talk' to us- we are Not, 'by and large' Medical People, but we Do have a very large Collective Knowledge- across a Wide Range of Injuries. I, for example, have an Auto-Immune Disease- that has cause Severe Brain Damage. (My Brain Scan, looks like a Nebula) whist Other have TBI's, like yourself (TBI...Traumatic Bain Injury- normally Percussive, in Nature.)
As I said above jdnhgn please 'Feel Free', to Contact us. Once again
Welcome New Friend😊
AndrewT
Nine years surviving post injury you have done quite well
You probably have amassed quite a lot of coping strategies you use without noticing!
I haven't heard of the pituitary problems before, I'll definitely look at the sites and ask, thank you!!
I've had two serious concussions where I lost my memory both times. At that same time in my life I was also using a lot of drugs and started having extremely severe insomnia. I get headaches that feel like a burning or stinging sensations or pressure build up all throughout my head mainly when I'm sleep deprived I don't know why. I'm not sure if you experience anything similar to this. I have yet to find a cure to the headaches besides getting an adequate amount of sleep. I wish I could help but I can barely even help myself. Good luck.
I've had one concussion where I fully lost memory of it and just woke up in a hospital
I've experienced the burning headaches before but not very often, usually when my headaches get particularly bad I just have to stop whatever it is and lie down and sleep and I usually feel a bit better when I wake up. Hard to do that when you have insomnia tho
I hope we both find help, good luck to you too
Hi J, sorry to hear all this, you've been through the mill. ( Those second concussions! 😱) Has it been from GP referrals though, or were you under a neurologist? You particularly need a neurologist who specialises in concussion/ TBI - as they vary considerably. I didn't have any luck with the neurologist that wasn't the TBI specialist - the migraine treatment drugs barely made a dent, and the drug side effects for me were horrible.
Neurologist number 2 specialised in TBI and said post traumatic migraine was quite different to ordinary migraine. He referred me to a specialist concussion sports physio who did work on my neck (nothing like anything the work the ordinary physio I'd found did) who said that it was nerves in my neck that went directly to my brain instead of via the spinal cord causing the 24/7 headache. He also found out that I had vestibular and oculomotor issues - so did exercises for those. Plus I was put on Duloxetine by the neuropsychiatrist - which has a pain relief element. I'm off it now.
What causes headaches now is when I don't manage my fatigue in a structured way - but I was coached very effectively on that by a neuropsychologist and it's been enormously helpful.
Suggest you get in touch with the Headway helpline and explain where you are with everything, and find out what they suggest - it's very helpful talking to people that 'get it' anyway. The number to ring is 0808 880 2244
Jen 🌸
I am trying to get a referral to see a neuropsychologists now, so im hoping I can make some progress working with them
I've called the helpline already it is really nice to talk to people experiencing the same sort of things and they were the ones who suggested looking for a neuropsychologist!!
Oh excellent - it does help, doesn't it? Hope you get a referral then - will be good to hear how you get on 🌸👍
I'm new here
Looking for help - new to all this
I'm new here, few questions about my bleed and PCS
new here
