Headaches

[Philcragg]

I had a head injury 26/9/2002, coming upto 20years ago, from the head injury iv got a brain injury, post traumatic epilepsy, seizures are under control, but im getting more headaches than ever, theyre almost on a daily basis what kinda life is that? Anyone any tips on how to manage with the headaches? Im booked in for a brain scan but still kinda depressing avin so many headaches 😩

[bridgeit]

Hi Phil, I agree regular headaches are absolutely foul. Managing frequent headaches effectively I think depends largely on what's causing them. I realize that many people will instantly say that where there's a BI, headaches happen, even a flare up a couple of decades post-injury. I can't disagree with that; I have insufficient knowledge about BIs, mercifully not having had one.

My suggestion sounds so obvious it might seem daft to put it to you, but have you spoken with your GP or consultant about some temporary medication support at least until after you've had the results of the scan? I think the usual offerings for neuro pain are tri-cyclics which can also help with relaxation and de-stressing. It's a question of whether or not that type of drug would be appropriate for you.

Back to basics that might offer diddly squat with a BI, all I can think of are my old fall-backs: a darkened room, laying supine, cold flannel on the forehead, lavender pillow, meditative sounds nearby and deep breathing. Trouble is, we don't want to spend the best part of each day laying on a bed feeling incapacitated.

I hope others better-placed than me soon offer something experience-based for you that might bring some relief.

[Nafnaf87]

Hello Phil

I'm 24 years on and still get the headaches and fatigue. Sometimes better, sometimes not, goes round in circles and comes in waves - when it's over I forget because I don't want to remember.

In all this time the only thing I've discovered is an ability to ignore, but that's not easy!

I have complained about the headaches and fatigue many times to all sorts of people, associated with head injury directly and not, and never got anywhere. However I have still not given up and have an appointment with a Consultant Neurologist at the Brain Injury Service this week.

If anything useful comes out of it I will post.

Best wishes

Michael

[Leaf100]

Hi Phil

That really sucks.

I had headaches pretty much non stop for years, though they kind of varied a bit and often were very bad - I couldn't get out of bed

I have a few ideas that might help but if course it will depend why, so good you are having it investigated

There is a medication that works on migraines, i dont recall the name, but you try it once and if the headache goes it is a migraine, if not, it is not. You can ask your doc . It comes in tablets or a nasal spray

The other thing I did was for related symptoms. Because of the headache various muscles can get super tight and then it gets worse, or maybe the muscles are part if it. In either case, the trigger point therapy helped. What it is is they inject saline or sugar into the muscles . They chose where by touching them to identify sore spots . Somehow the injection or putting the fluid in causes attention to be paid and the muscles relax. It does mean a lot of injections and you need to rest after though it sure does help.

Where I live ( not in the UK) this is done at the hospital pain clinic, some clinics that do just this, and naturopaths. It seems fairly mainstream so my guess is you would have it too though might be called something else. The family doc here refers and so it is covered, though with the naturopath it would be private pay unless those are covered there.

Massage therapy can also help with the muscle tension part.

Make sure you dont have dry eyes or a dry mouth. There are various drops and sprays for that.

You can also call Headway and ask if they know any thing that might help you manage.

Of course always clear any thing with your doc first, for example I know massage therapy is not recommended if you have certain conditions.

Oh, the other one is I found eating something cold, like frozen fruit, helped.

Other than that, dark room, loads of pillows to help you be in a position that hurts less - if there is such a thing, fuzzy blanket, quiet, and try to zone out.

And do remember to drink lots of water. Being dehydrated only makes it worse. How do you know if you are? When you wee you can see it in the water, if you arent dehydrated you wont be able to see it. (It would be the colour of pale straw if you have to give a lab sample.)

I feel for you. Mine eventually dropped to a level where I sill have them almost all the time, but sonetimes I either don't or havevjust gotten so used to it I don't really notice.

The other thing you also have to watch for is being in pain long term can mess with your perception of it. I can't excplain , try to focus and feel sensations in other parts of your body and you may know how that does or doesn't occur for you. With the bi thing hard to know if it is related to that instead.

Did I remember to say check with doc before trying anything new?

Hope you find some answers and some relief soon

Leaf

[JHN62]

Feel you pain Phil!! I too had a brain scan recently, as a precaution & check, due to consistent debilitating headaches. No-one contacted me afterwards so, guessing nothing untoward evident?!

I have come to the conclusion mine are likely duebto my body's reaction to good old stress - even if i dont feel stressed. I know i internalise things & this could be the reason. Also, my vision is causing problems & i have some weird issues going on there which i hope will be resolved with new prescription glasses (which i havent been able to afford yet!) My SAH was back in 2008 & affected my left optical nerve so could be a possibility?

Ĺiving with daily headaches is not easy, some days i function perfectly well, others i just take to my bed. Although, on bad days even lying on my head on the pillow gives pain/discomfort. If i can, then taking a walk in fresh air does help some & ensuring i drink water all day definitely is key! Physio or massage may help identify some tension, particularly in the neck & shoulders which could be contributing? In the end, it is no one cause and trying to find a 'one size fits all' solution wont work....I've been searching with no luck so far! I know it sounds cliche, but relaxation, meditation techniques if practised every day & when needed could help too. I wish you well & know that you are not alone in dealing with this or searching for answers xx

[DebFl]

HI! I am going on 10 years post brain surgery/stroke. Multiple migraines a week. I jast saw my Neurologist this week. There are mnay new drugs. Since I am taking anti-seizure medications ( I have no choice) . I have opted out of other medications.

I can tollerate the headaches and I do push through regardless of the severity. Only intense smells will bring me to my knees and I vomit. ( lovely) I keep busy doing things that make me happy . I also manage my anxety with exercise and therapy.

Check with your neurologist for a review of the latest medicatons that you can take 1 injection a month to prevent the onset of the headache. Keep us posted.

[LouBL0u]

Hi I am almost 4 years post TBI and have a diagnosis of Functional Neurological disorder and in the beginning i had a constant weird headache. Like my forehead was creeping over my eyes and round n head! Today and yesterday it’s in the back of my head and I feel sick. I took migraine tablets but sleep is the only escape! Now happily, they are no longer daily and I PACE to help. ( Plan in rest before and after active days) I also do meditation techniques and try to eat and drink healthily…

I’m sorry I don’t have the answers, often we just carry on, trying to work it all out! Hope today is headache free for you all

[skydivesurvivor]

same me with the headaches! Choose to believe the brain is reworking?!! Look on the good side!! What ever the day day just think , AM STILL HERE …. Even if u so sometimes wonder why?!! Obviously got a job to do!! Keep safe & SMILE despite it all!!