Migraine headache agony: Since my injury I have. Had... - Headway

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Migraine headache agony

BlueSky01 profile image

Since my injury I have. Had headaches daily and felt up and down most days. On Saturday afternoon out of the blue I started with a headache which quickly turned into a migraine.

Tablets haven’t helped, I have been in bed in the dark until this morning...it’s a little better but not much, can hardly see to write this but desperate for some relief

As well as the headache I feel dizzy, Nauseaous, deafness all the same kind of symptoms as when I had my injury ....almost like day one all over again

Is this normal ?

Anyone found ways to manage it / stop it?

Any advice on tablets to help stop it ?

I am wondering if I have overdone things and that was the trigger ?

Any help to relive the symptoms welcome

24 Replies

Hello there. I'm just wondering if you've been checked to see if you have sustained a CSF leak? A symptom can be a very drippy nose, with salty/watery fluid. However, if it's a spinal leak, the nasal drip won't be apparent.

If your symptoms are positional, i.e. worse when standing up/sitting and better when supine, that's another indicator.

Check out the symptoms of CSF leakage online and see if yours fit into the general area.

Also, it might be worth visiting a really good chiropractor to see if you've also sustained a neck injury owing to trauma/impact.

Just ideas to think about; hope they're helpful.

BlueSky01 profile image
BlueSky01 in reply to bridgeit

HiI had no heard of CSF leakage tbh

I will check it out thank you

Sandra

BlueSky01 profile image
BlueSky01 in reply to bridgeit

Just read the info around CSF and i do ha e some of the symptoms and it is worse when I get upI guess it’s a possibility will mention it to GP tomorrow

Thank you

Sandra x

bridgeit profile image
bridgeit in reply to BlueSky01

I hope your GP really listens to you. Bear in mind that CSF leakage is a condition that is one of the most frequently 'missed' in terms of GP and neurological diagnoses. It is too often completely overlooked. There are cases where people have struggled in vain for years to manage a variety of peculiar symptoms that are finally identified, often quite by chance, as the result of chronic CSF leakage.

It is thought that the best scan to investigate a cranial/spinal CSF leak is a CT myelogram/myelography. It is invasive and highly specialist. If present, fixing a leak may not always work, but at least sufferers should know what they're dealing with and be advised about how best to manage it.

I recommend you make sure your GP pays attention to and discusses fully the possibility of a CSF leak with you. It may be ruled out, but this should not happen without clear explanation.

Make the most of that GP appointment!

Hi, I still get all the symptoms you are experiencing now if I overdo things, it's been over 4 years since my injury and fatigue is something we have to live with now and it is unlike any fatigue that you have ever experienced in your life pre injury, unless anyone has ever had any type of brain injury then they will never be able to understand how it feels. It took me 2 years to finally be able to manage my life without overloading my brain every day, I would spend days in bed in the dark trying to recharge my brain and would then run myself into the ground again very quickly. Please read letter from your brain on headway, it explains things far better than I can . My vision starts to get blurry and that is the point I need to stop doing what I'm doing and rest in the dark otherwise I will spend days in bed trying to recharge my brain. It's incredibly difficult to accept that simple things I used to be able to do will now push my brain into overload. Every brain injury is different and everyone's experiences will be different but fatigue is something we all have to deal with either short term or long term.

Kirk5w7 profile image
Kirk5w7 in reply to twice

Hi twice, please read my reply to BlueSky all our symptoms are much the same. I still have to manage my fatigue daily but I find it much easier to deal with now.It’s worth mentioning that I have worse days when there is a low pressure system controlling the weather, my head behaves much better in high pressure systems.

Janet x

twice profile image
twice in reply to Kirk5w7

Hi, that's really Interesting about the low and high pressure, i will keep a check on that. I will also speak to my doctor about pregabalin. I have actually been trying to work out why I feel pretty good today and have been feeling pretty rubbish for a few days.

Thank you for that

Take care

BlueSky01 profile image
BlueSky01 in reply to twice

I think I have been overdoing things and it’s a learning curve ...when to stop and when to carryon ! Sandra

Marleyboo profile image
Marleyboo in reply to twice

Everything you have just wrote is exactly how it is for me. No one around me gets it, how it feels. God reading that has made me feel so much better that its not just me feeling like that.

twice profile image
twice in reply to Marleyboo

I've lost count the number of times I've said why don't you just get it.

Hi BlueSky,This sounds like all my symptoms except I wouldn’t get any pain at all.

I was told the symptoms were migraines in origin and my GP was stumped as to how he could help. All over the counter pain killers were totally ineffectual, and strange taking painkillers when no pain!

However my rehab consultant came to the rescue, he prescribed Pregabalin which I have been taking for a number of years but it helps and has given me back more of my old life, very few wipe-out days now and many more useful hours in the day.

Hope this helps and maybe worth pursuing for yourself.

Janet x

BlueSky01 profile image
BlueSky01 in reply to Kirk5w7

I have an appointment with GP tomorrow so will mention it to him I thought it was a little better this morning but in the last hour it’s started again 😩

Marleyboo profile image
Marleyboo in reply to Kirk5w7

Kirk5w7 i was getting strange fuzzy feelings and aches and pains. Neurologist told me its migraine, but i didnt get any pain in head really. So didnt know what he meant. But then i started getting auras but again with no pain, he said its still migraine and put me on propranolol. But now im getting aura and then with pain after. Onetime it was so severe pain that went then next day came again and the next. I have just literally had one today had aura, then slight headache but totally fuzzy, strange and generally miserable. Now im thinking i may ask about pregabalin

Kirk5w7 profile image
Kirk5w7 in reply to Marleyboo

It’s worth asking about, propanalol is a beta blocker that should bring your blood pressure down. Some people find they slow them down and don’t like that effect.I was already on blood pressure medication.

Hope it works out for you

Janet x

Marleyboo profile image
Marleyboo in reply to Kirk5w7

Yes im definately asking. im also on blood pressure meds amidipidine think thats the name. Doc just said take the propranolol 3 times a day and then they lowered the dose of the other one. But im taking all these tablets and not really feeling any better. Only thing is im trying to loose weight and i know some of these meds you gain weight. Its like a vicious circle. But i will persevere many thanks traci

Propranolol didn't work for my post concussion migraines - it's prescribed for regular migraines as a preventative prophylactic treatment, but my consultant said they don't prescribe that for post concussion migraine anymore. I also got incredibly depressed on it - which eased up when I weaned off it.

If you're taking it for blood pressure, there are alternatives to beta blockers.

Hi Blue Sky, I can relate , go to braincare.center/brain-inju... check out the Omega3 protocol it has helped many people with your symptoms, it helped my recovery. There is a lot of info on the site and get the book if you can.

BlueSky01 profile image
BlueSky01 in reply to Gordo6500

Thank you I will !! Sandra 😊

My injury was 10 years ago. It wasn’t as severe as some but I do get headaches and fatigue most days. Migraine is something I live with. Eventually it became less frequent.

No matter how bad it got, or how long it lasted, sometimes weeks, nothing terrible happened. That was my real fear, that I’d end up messed up and back in hospital again. Don’t focus on all the things it “could be”.

See your GP. Don’t freak out. It will pass eventually.

Thank you for the advice and support Spoke with GP today who has prescribed some pain blockers (not sure what till I collect them) he is also ringing the neurologist for an earlier appointment

He was very supportive

Trying hard to think positively!!

Sandra 😊

Kirk5w7 profile image
Kirk5w7 in reply to BlueSky01

Pleased you are getting treatment x

Hi BlueSky, I had two or three migraines a week for months and months after my concussion, on top of a background constant headache. I was told by the second neurologist that post traumatic migraine is different from regular migraine and is not chronic if treated. Which has proved correct. First neurologist tried a couple of regular migraine prophylactic drugs, which apparently aren't used now for post concussion - and in me the side effects were miserable. I only lasted on the first one for a week! What worked for me was low dose Duloxetine which is prescribed for people with fibromyalgia. I'm off it now - after about 18 months, no migraines, and no problems coming off it either. The thing with post concussion is that drugs should always be lower dose than the general population 'start low, go slow'.

That said, when I got a really blinding migraine early on, the gp told me to go straight to A &E.

I was told not to use otc painkillers as they can produce a headache.

Migraine buddy app is useful for suggesting relief options - and for logging any improvements over time.

Neuropsychiatrists are better than GPs for prescribing drugs post brain injury - it's their specialty, they understand how different drugs act in the brain - it's not about questioning your mental health, or it being in your mind. Mine was great at explaining that my fatigue was a physical result of the brain injury.

Neurologist no. 2 said if I got horrible side effects from anything, that they should be stopped within a week or so.

I have been prescribed Gabapentin by GP ...got them this morning but not sure if I should take them. When I read about them I didn’t think they were for meI have a constant headache but I can tolerate it ...but the migraines are on another level and need something for them

So I’m confused now going the GP will get me an earlier referral to neurologist so I may get some clarity

Sandra x

Hi Sandra,

It's a bit shocking being offered meds if you're not used to taking them, I was in an agony of indecision about starting every single one I was prescribed. Some drugs work for some people, and not for others . Probably best to try it and see. If the side effects aren't acceptable, don't try to tough it out - just whizz straight back to the GP and ask what else you can try. Some people have no bother at all, in which case your question is whether or not the migraines reduce sufficiently. Start keeping a migraine diary and note the duration and pain score out of ten

Neurologist no.1 did say he thought the migraines could be protective - so a way to stop me pushing past fatigue, so perhaps experiment around managing your fatigue as well?

Really sympathise about the headaches, it's horrible.

Jen x

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