Struggling

[Valerie1986]

Hello haven’t posted for a while I’m struggling with the side affects of my brain injury and the almost daily headaches. How do other people cope what support do you have ?

Any ideas would be great

[rockyandfrank]

Hello

Pain is so dehabilating - Stick to your pain relief before you need it - I take it before getting out of bed in a morning - by the time a coffee is on the go - it is already starting to kick in. x

[Shon48]

I’m struggling too with dizziness, fed up falling just fed up basically . I have headaches too but I can deal with them just can’t deal with the dizziness . Hope you find an aswer 🤗🏴󠁧󠁢󠁳󠁣󠁴󠁿

[Silmarillion]

I went to see a neurologist who specialises in headaches. I had a severe pressure headache that lasted nearly 2 years. My life was a nightmare but he put me on a new medication regime which have made a difference and I only get about 4 headaches a week now. I’ve also had to hold down a job during this time which wasn’t much fun. Things were really getting to me for a while. My family help me out though. Work support me as do access to work. I’ve had to go part time. The headache pain management nurse specialist calls from time to time to see how things are going. I was diagnosed with intercranial hypertension.

Having all the headaches, fatigue and other brain injury symptoms can get to you. They got to me, I’ve now got depression because of it. I’d just love to have a day where I could bounce out of bed early and run around all day like I used to...sadly things are different now. You just have to make the most of what you have now!

Go and see your gp and talk things over with them. If they’re not supportive, find a new one. Give headway a call. They are so helpful. Have you got family support?

[Valerie1986]

Thank you for your reply’s. unfortunately I can’t take pain relief that often as my neurologist told me it will make my pain worse and only really strong ones touch it. What is a headache pain management nurse I’ve never heard of them? I’ve tried headway several times and have found them no help at all. It’s hard when you’ve got an invisible illness as everyone things your fine and if you say anything they just tell you to go to bed. I’ve had this for 17 years now and things are just getting worse I need to find a something just don’t know what it is yet

[Lynnepitt]

There's a type of physio that can help some people. I was referred to a neuro physio after having a serious car accident last year and some of the ongoing problems I have is dizziness and problems with my balance. The waiting list is long because it's so specialist so the ABIRT psychologist I see refered me to their inhouse physio who told me a lot of people who've had a tbi get a condition called BPPV (?) which means little grains that normally flow through your ear canals compact and this affects balance. He said a lot of people benefit from this type of physiotherapy and many are cured after just one session. I need to go back for a follow on as I need more that one session but I've definitely noticed a difference. Maybe this is something to enquire about? I hope this helps 🙂

[Valerie1986 in reply to Lynnepitt]

Thank you it sounds really interesting I’ll ask about it x

[SAH-survivor]

I had a SAH 2 month ago and still suffer with headaches. I have seen a neurologist and he has put me on amitriptyline which helped but it took 4 weeks - it isn’t a pain reliever but prevents headaches. I have also looked at natural therapies; peppermint oil on the temples, taking magnesium and Vit B as well as accupuncture and reflexology. They have helped a lottle but I suffer from the diziness amd fatigue too. Try and see a neurologist. Hope you feel better soon.

[Valerie1986 in reply to SAH-survivor]

I had acupuncture at the drs but they forgot about me and it took a hour to get help so it’s sort of put me off I take cut b and will try the magnesium and peppermint oil thank you

[Hidden]

Hi,

I don't know much about these solutions but have you tried injections to numb the nerves or botox injections or even ear piercings in specific places?

Alternatively have you attended pain courses about managing pain gates, or ACT course?

And the others mentioned are SSRI or Amitryptiline?

[Valerie1986 in reply to Hidden]

I can’t get Botox on the nhs and am a bit nervous about getting it done else where and wouldn’t know where to look its something I have thought about I tried the ear peircing but it got infected i tried the pain course which is mindfulness but didn’t rate it much as I do mindfulness already I find it’s the only things that helps. I don’t know what pain gates or act courses are I’m on amatripaline but a very low dose.

[SAH-survivor in reply to Valerie1986]

I was on a low dose initially and now up to 75mg which definitely helps. I have had to accept I have a permanent headache but its easier with the meds and therapies.

[Valerie1986]

Thank you for all your reply’s x

[Hidden]

What have you found that's helped along the years?

[Valerie1986]

I take my strong pain killers when the pain is to bad to cope with I try and do this as rarely as I can I do mindfulness everyday and use forehead. The main thing is avoiding things that give me headaches which unfortunately is a lot and makes life boring.