Headway
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Near Constant Headache

Hello,

I'm doing a bit better now and my memory is even improving a bit. The only problem is that I have near constant debilitating headaches. They are generally at the top, front and sides of my head and do not seem to react to OTC painkillers (Ibuprofen, Paracetemol, Aspirin)

Will these go away or get less? In terms of my googling I found that propranolol can be good for headaches. Does anyone have any experience of getting treatment or medicine for these type of headaches. I'm struggling to get through the day at the moment.

Thanks,

James X

23 Replies
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Who are you seeing James in terms of doctors etc? It feels like you are or have falling though the gaps.

Have you had any rehab or assessment for your Brain Injury last post you said about 5 months back? So clearly it is quite early days.

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Yes, it is early days. I'm an impatient sod at the best of times but I'll stick it out.

I'm seeing my GP at the moment. I've not had a neurological assessment since my diagnosis. :-/ I really think that if my headaches get cleared I'll have a better chance of getting back to normal life. Hopefully there is a cure for this.

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Ask your GP for a referral to a headache specialist. They’re usually neurologists that deal just with treating headaches. You might have to travel to see them, but it’s worth it

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I have constant headaches too and I went to see a headache specialist and they found I had secondary intercranial hypertension.....I’m getting treatment now and I’m more functional

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Hello- really good to hear you are getting the treatment you require. Can i ask: Is it just medication or other therapy as well? how did you manage to be referred to a headache specialist? What did you have to do first, did you keep a headache diary?

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I’ve had quite a few lumbar punctures and they put me on a diamond. We are experimenting with a second drug, but most they’ve tried so far make me want to sleep.At first I didn’t need to keep a headache diary, because I had a headache that lasted over a year in length, nothing would get rid of it until the lumbar punctures and diuretics.

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Thanks S, the treatment sounds painful in itself! Are the lumbar punctures to take fluid and diagnose?

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They do lumbar punctures to release the pressure in my head by drawing off a bit of caffeine (spinal fluid). They aren’t very pleasant.

The diamox cuts down the amount of CSF produced in the head. It’s also a diuretic to reduce the volume already there.

The doc told me I have this because the blood from the bleed damaged the cisterns in my brain so the brain drainage system is now damaged

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Thanks for the advice. I think I'm going to get an appointment to see a professional as soon as possible. What drugs/therapy did they put you on?

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My headache spec told me that brain injury can sometimes trigger migraine type syndromes too. There are quite a few treatments on offer, mainly just tablets. It’s important to have a proper assesment

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I know that Propranolol is a Beta-blocker and should only be used after review of one's medical history.

Maybe you need to ask your GP for a referral to a neurology clinic for assessment re. your memory issues, and advice on more effective meds for the headaches.

I must say though, I still suffer with cluster headaches and am only allowed Codeine and/or Paracetamol for the pain. But if you're in constant pain, a neuro-practitioner might be able to prescribe something more effective. I'm allergic to Ibuprofen but, if you can tolerate it, it's a stronger and fast acting painkiller.

I think my permanent headache (after a haemorrhage) lasted around 6 weeks then tailed off gradually after I actually stopped all pain relief. I still use Codeine for headaches, but keep doses to a minimum. It's well documented that regular use of pankillers can actually aggravate nerves, muscles & blood vessels.

But the brain itself has no pain receptors and only registers and reacts to pain elsewhere. The pain of Meningitis (as I discovered some years ago) is off the scale, but comes from the meninges which is a protective covering, and not the brain itself.

Get some neuro help James. A referral might take a fair while in the present NHS crisis, but knowing you're 'on the list' for help might relieve some of your anxiety............I hope so.

And keep talking to us..................talking is an underestimated therapy ! 😏 Cat x

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I was on beta-blockers a few years ago for an unrelated heart rhythm problem so that shouldn't be a problem. So the way I interpret your answer, the headaches should go away at some point? I've also been put on Lamotrigine for my bipolar disorder, apparently this can both cause and cure headaches so perhaps this might be the actual cause.

I'm going to a psychiatrist on the 22nd of January so I will discuss the lamotrigine with him. I know that it would be ideal to speak to a neurologist so I'll try to get a referral from my GP.

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The improvement after stopping the painkillers (Codeine & Paracetamol) was my experience James, but it's just one possibility. Finding the cause of headaches is often an elimination process, and I hope you get to the root of yours soon.

I find 3-4 days exhausting so it must be hell coping with one for 5 months. Good luck............ x

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My brain injury was 4 months ago. I have regular headaches which are debilitating. The only thing I can do is go and lie down when I get one. The only thing I’ve tried that works to ease mine is oxycodone. They gave me this in the rehabilitation unit. When I came home 7 weeks ago I had to go to my GP when the medication the doctor gave me ran out. He wouldn’t prescribe the oxycodone. He said because it’s addictive but I think it was more to do with cost. He put me on codeine instead, which had no effect whatsoever. I spent about 5 days in absolute agony when I went back to the doctors (which was a hard thing to do because I was in so much pain) and I begged to be put back on the oxycodone or something stronger than codeine that would ease the pain. Thankfully I was prescribed the oxycodone. I’ve never been so happy to receive a drug when I collected it. Got home and took a dose immediately. 30 minutes later the pain had gone. For the first time since the doctor took me off oxycodone. I still get headaches almost daily but the medication does relieve them eventually. I had all the front of my skull removed by the hospital at the time of my accident. Im currently waiting for a date for an operation to have a titanium plate fitted. Although I’m nervous about this I am hoping it helps the headaches. If I do the slightest thing, for example take a load of washing downstairs and put it in the washing machine, it causes a headache. If I sit and don’t do anything all day the headaches don’t tend to come. But it’s impossible to live like that. I have 2 boys . I can’t just sit down all day. It’s really frustrating not being able to do the simplest of things without causing myself to suffer from headache pain. Sorry James my woes don’t help you. In a nutshell the oxycodone does work for me. I don’t want to be on it forever I want the headaches to go. But it helps I. The meantime. Hope we both get rid of these headaches

Gina x

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That sounds like a really hard situation. I'm not sure about going on oxycodone because of its addictive qualities. I'm always cautious with opiods because a family member found it really difficult to get off of Tramadol.

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If you find something else that works just let me know. I'll let you know if I find something. :-)

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Not sure this is right but the surgeon told me never take aspirin or ibuprofen after a brain injury , that might be the cause of headaches

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Hi James

I think good advice is really important. I have a BI after meningitis and saw a neurologist about constant headaches which he diagnosed as migraines. I now take topiramate and amitriptalyn (which I can't spell) as preventatives and aspirin or cocodamol with maxalt to treat the headaches when they hit. I also worked with a neuropsychologist on pacing myself, among other things, as stress and tiredness are guaranteed ways to bring on head aches.

I no longer have constant headaches, although I am five and and half years on, and only get 4 -5 migraines a month. Hope you get some good advice soon.

Best wishes Blim

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Does the Topimarate work for you? That might be an option. I'll push for another referral to a neurologist and MRI scan. Amitriptaline is probably not recommended because I'm on a lot of Mood stabilizers and Antidepressants as it is. Now that you don't have the constant headaches gives me a great deal of hope that it will get better though.

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Yes the topimarate works for me. I also find that when my headaches are more under control my memory and speech is better. My gp is really lovely but it was the neurologist who was able to come up with a successful treatment plan.

I hope you are able to get an appointment with the neurologist soon.

Take care. Best wishes Blim

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If the usual common painkillers are not helping then you could either chat to a pharmacist about possibilities, or a good GP. There could be various reasons. A physiotherapist can also be helpful to see if there is a musculoskeletal or neural reason I.e with your neck. Just a thought

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The headaches need looking in to as to why, maybe you need a repeat CT/MRI. Good luck 😉

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Hi James, ive just read your two posts and the replies you received. I too attempted to take my own life (I have a personality disorder) and ended up with an anoxic/hypoxic brain injury. This has left me with a much reduced quality of life and much pain. I’ve recently attended my first neurologist appointment a year on from the incident so hoping I’ll be able to get some help. If you want to chat more please feel free to message me.

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