Tickles, itching & burning in brain?

I've got an acquired brain injury, am I the only one to get these or does anyone else please? They drive me crazy: can't scratch them. The burning is terrible, words can't describe. Surely I can't be the only one? Docs ask about headaches but never about this - is that because it's very rare or just less known/talked about? And if person much worse injured than me might claw at head and nobody would know why. ? Thanks.

34 Replies

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  • Don't understand the question ???

  • Can't say I identify with this but it sounds unusual to me, and I would suggest that 'Muddled' seeks help from a neuro-professional as it possibly suggests a nerve issue in the brain ??

  • Hey Cat, I didn't get the question. Can U explain what she meant please, cos U obviously did ???

  • Sounds like itching and burning sensations in the brain area after trauma or surgery ?? Sounds pretty awful & needs addressing.

    It's possible that if it's a recent BI it's related to the healing process.

  • I get it but luckily it's not something I've encountered personally, but if others have maybe it's worth contacting Headway t see if they have any suggestions - For Head Office 020 8640 8413 (best if using a mobile or Freephone 0808 8002244 free from a landline only.

  • Yes, and far worse when overtired and stressed. Trying to do paperwork and understand complicated things (like box for TV, phone & net = given up and still no TV). More dithery and cack-handed and absent minded than need to be. Then peole think I can go out, talk, explain (again, over & over) when I'm so scrambled and frazzled = can't so stay home and cry and go into deepest black despair. Blocked at every turn. And some laugh at me while dong that to me even when they see how upset I am and crying,ha ha they go.

  • As above but no neuro has ever examined me properly so got to the point can't trust them and don't want yet more docs touching me, poking me then not doing properly again and lying 'all normal' or other nonsense. Can't do this. In pieces. Being punished for not accepting their lies, denials, so cruel. Lost everything and this driving me so mad, so afraid of everything and everyone. Can't run to docs for help coz they just hurt me more. Nowhere to turn. No choices. Hate my life, hate having all this done to me and so sick of being told 'you're a psychiatric case' but not even helping with that - other than pushing drugs. Very scared, unsafe.

  • Muddled, how long ago did you have your ABI ?

  • Nearly 9 years but docs refuse to explain my CTs, MRIs and x-rays. Just get told I'm a psychiatric case coz 'so many doctors/experts can't be wrong' when they say 'all normal', just like hospital and docs did after bungled op. I know my body, know I was injured and all ignored. Yup, that makes you go mad: desperation for truth/info. Nobody cares. Can't go on.

  • I get a sensation of tingling or like insects crawling across my scalp, there is a name for it but it escapes me at present. I don't think there is a known cause of it but it only happens occasionally and only on the side of my head where the most damage occurred, so I take it as nerve activity. It only lasts a short time and I don't find it unpleasant, sounds like Muddled may need to get this checked out. Xxx Janet

  • As above, the docs all make out my injuries aren't real. Tried mental health (several times) but just constant 'assessments' (not writing what I said or addressing WHY I need info, truth, help and real SUPPORT) and then dumped, over & over. At my wits end. My life unbearable, keep saying that and how in despair I am but none of them paid to help me give a toss. What's wrng with them? But they all say it's me, I'm deluded (mad) and must be drugged til I agree with their 'diagnosis'. So low and depressed, feel like all ganging up on me. Oh but that can't be real can it = proof I'm mad? So so sick of this, last few years destroyed even more than original ABI. Why should Headway/charities fill in gaps in state services? Can't understand this world, my memory, undestanding, speech and sight far worse. People think I can do and say (am clever) but aren't/can't, though try = never good enough?

  • a lot of this sounds like the effects of medication. The itching etc can the side effects of opiates like codeine morphine etc. From personal experience I would check the patient info sheets for your meds because relying on doctors to know this information is a waste of time. hope this helps , billy

  • Nope,not meds, it started very fast after bungled op, whole back of head, thought I'd caught headlice = no, bought new pillows = not that. Now think it was coz at very start most mega headache (they call it thunderclap) then damage to brain. Got it long long before meds and now it's always worst when trying do paperwork, understand too-complicated things and lots when things happen that just don't compute. Feels too sometimes like the cartoons of people with smoke/steam coming out of their ears, exploding out, brain exploding and heat.

  • Something like this:

  • I have an ABI, and one thing I've had is tingling in the left side of my face and my left hand, which, when I mentioned it to my doctors, they completely ignored.

  • Hi muddled

    I think maybe try to explain the sensation to a DR, but having said that the brain is so complex they can't always explain things. When I overdo it and get over tired I get a prickling feeling under my scalp, some days it is so sensitive I have difficulty brushing my hair as my head is so sore. I think it is nerve pain in my case.

    Hope it improves for you.

  • Yes, me too. And when over-frazzled get weird numb-burning in forehead up into hairline, then my brain goes into scribble and meltdown,like it's been wiped and empty for a bit.

  • Sounds like maybe you are pushing yourself too hard.

    Be kind to yourself muddled, try to relax (yep I know that is easier said than done!) But it does help the symptoms if the stress is not aggravating them.

    Good luck

  • Thanks but 'pushing myself too hard' = trying do shopping, make food, go laundrette, try find things chaos at home, more & more formsto fill in, living in place that's unsafe and driving me mad, pleading for help and just being signposted. More letters don't know what to do with, more demands on my time/energy. Try to relax? Can't. Scribble in brain, on overload = can't shut it up. Tried yesterday and brain/heart on overdrive, feel like having mental breakdown, fear heart attack from stress. Fear everything, lost myself. relax? Ha ha. But not funny. Need help to be in place fits me, no chaos systems/home/papers, but no help anywhere. Please don't say 'relax' when impossible. Oh and when I collapse under it all I get moved on again, made to leave yet another home, 8 times in 3 years now. And you say relax? Maybe you not been through this, lies, denials of injuries, no med care etc. Well relaxing = I can't and when try get prodded to try do more things I can't. Cry and plead for help and they do opposite. Relax? Come on.

  • Hi muddled

    I don't need to try shopping/cooking/form filling etc - I live alone, 6 months post ABI. Discharged home from hospital in pouring rain in PJs and slippers to empty house (with rotting food in fridge and vommit on floor from a month ago!) with no after care in place. I am well aware of the difficulties we all face.

    I am sorry that my post was clearly unhelpful to you, it was intended to be supportive and understanding, hence putting in brackets about not being easy to relax.

    It sounds as if you have a lot of situational difficulties too, such as housing. Sorry I am unable to offer any advice other than suggest you ring the headway help line they are very understanding. Also the Samaritans are very supportive of people at their wits end, regardless of brain injury etc.

    Good luck

  • Sorry you've had such a rotten time & with no support Hedgehog. Hope you feel supported here . . . . . .you always do your best to help and support others.

    Take care, Cat x

  • aww thanks Cat that's really kind. Yes I do feel supported here, thanks to all the lovely people on here - like you :) xx

  • I'm sorry, I was v angry and upset, so sorry.Just trying to explain. I know you (and lots of us) have had/are having terrible time. Afraid I sound like whining spoilt cow, so sorry. Yup, housing a nightmare but am stuck = until I mess up and I get moved on again to yet another place that doesn't fit me. I sort of know what I need but am silly, thought could make this place work, so stupid. Need expert help, but real help. Help me make place/systems/tech (I can do/understand) to make it easy as poss. I know though I'll always create chaos unless I do nothing at all. That's when I hit rock bottom coz even perfect housing and me/my life still chaos and mess. Hopeless. So sorry. And there's lots of us in same boat, loads, errm but they can't say how many coz lots of us not counted/written off as 'just mental health'. Sad sad mad world.

  • It's ok muddled, I do understand and you didn't come across as a spoilt cow - but as someone who is at her wits end. :(

    We are here to listen and you are not alone here

    Best wishes :)

  • Thanks, it's just that to others I sound unreasonable, others with no understanding of ABI that is.

    Thanks, not alone here but in real life feels like me up against everyone and everything, all too hard and set up to confuse me more.

    Maybe not planned, all by mistake? Don't think so.

    Motive? Can't guess, dunno. Hurts being frazzled so much though.

    Thanks for listening which helps a bit.

    I won't hold my breath for change though, simpler things and being able to join in, which is what we all need!

  • The isolation that comes with BI is very hard to endure. The lack of understanding compounds our difficulties.

    It is understandable to be suspicious of others when you have been let down etc.

    I am always happy to listen if it helps, as are a lot of the other lovely people on here. :)

  • My God,Hedgehog,your experience sounds appauling but sadly not unusual I have come to realise : (

  • Sometimes we have to accept treatment that we're unhappy about if we want to escape a 'downward spiral' of illness. I've had to undergo many different procedures, surgeries and drug treatments throughout my life, some of which were pretty scary and unpleasant. But I'll accept whatever it takes to survive.

    I've also had long periods of deep depression, and I'm glad I allowed the psychiatrists to intervene because I've now had my life back for the past 20 years thanks to antidepressant medication.

    Please think again, Muddled, about accepting treatment to relieve your anxiety which is presently at tipping point. Because whilst you are so full of torment and anger, nothing will change and no one can get close enough to help you.

    Sincere best wishes.

  • Treatment should always be what is acceptable to and chosen by us. None of us should ever have to accept any treatment (we have the right to refuse for no reason at all - except - still today - if we're sectioned/locked up under Mental Health Act when we lose all our rights and are treated like criminals but without a trial first) and there should always be a choice of options with risks and benefits explained. I have accepted countless assessments for treatment but not got any even when described as severely depressed and anxious, pleaded for it again more recently (to mental health+) and was then dumped (got drugs though, psych elsewhere but too far to travel), but I also need help to change others' behaviour towards me and the drugs don't do that! They must stop them treating me with no care and compassion, touching my body for no good reason and lying to me and refusing to help with necessary practical things (causes of why I feel as I do) as well as physical pain.

    Actually it's wrong to say no one can get close enough to help me, I don't know why you wrote that (why?): I paid for help (in my home) and she abused my trust. I invited bloke in to fix my sewing machine and he abused my trust and hit it with a hammer. I let removals take my stuff away (twice) and each time they lost, wrecked/fiddled with my things, I let plumber in who didn't fix it last time then this time broke something else. I have let 4 doctors very recently examine me and each one chose not to examine properly and not address my severe physical pain and fobbed off every time. So nobody can say I don't trust or let people get close. So I don't understand why you wrote that.

    I thank you for your advice but unless people stop abusing my trust i.e. give me real cause to trust with THEM losing something if breach it (risk for them as well as me) can't. So it's very unfair to blame it on me rather than those who aren't doing their jobs they're tasked with - and maybe/apparently paid to do. But even if 'volunteers' shouldn't behave like that,most 'normal' people (including me) don't.

  • Hello muddled.

    I am not sure of what may have led to your symptoms. But in my case (check my profile) I am sure I had a chemical lobotomy after being on Zoloft for 11 years.

    I have been searching the internet in several languages for nearly 1.5 years trying to find information on acid burning/tingling "pins and needles" sensations in the brain but couldn't find anything.

    My profile avatar depicts the feelings I have and to which no doctor has paid attention so far. They simply don't know how to deal with it and say we don't have sensory nerves in the brain that allow us to feel these "tactile sensations" but hell how I feel them. Day and night.

    MRI and CAT scans came normal, so I'm left with the treatment resistant depression and this terrible sensation that my brain is burning in acid and needles sticking in it.

    It's hard to imagine something as despairing as this, and yet, although I've been reaching for help for all this time, couldn't find any.

    If anyone has a clue on how to help us, please ...

  • Oh,like me, awful huh? What do they mean: no sensory nerves in brain, what's a headache (that they DO ask about) then? And doctors don't know everything, about time they learned from us!

    Don't know about you but mine far worse when overloaded, overtired/stressed and when trying to do hardest things like too-long letters (and keep forgetting the point, going off on tangents), you?

    And the x@?!*% paperwork and public bodies, banks etc. not doing as they promised.

    Come on docs (if any) and experts - if any read this but most of all clever ordinary people: anyone else with ideas/intelligence = anyone/everyone = ideas/help please!

    Ahh,got it: don't make people like us do too much we find extremely difficult.

    Like making people who struggle at maths do algebra day after day.

    Or people who can't walk run up a hill.

    Why are we expected to do things we really can't (let alone properly) and even when just might do bit of every other part of our life suffers, like making food and eating properly and rest/stop when we should?

    Others aren't expected to perform their impossible like this.

    You don't make a person with a broken leg run a marathon so why make somebody with broken brain over-use it = same thing, different part of body.

    Very unfair!

  • Hello muddled

    Well, I guess I didn't understood your reply totally. We're trying to talk with each other using broken brains. But anyhow, you seem to be in a better position than me, as you seem to find partial relief when you're less overtired. That plays on your favor.

    In my case I was the happiest idiot in the world popping a Zoloft pill every day for 11 years, until one day I woke up for a lobotomy reality. I can't give any relief to that no matter what I try and every single day I've been thinking about ending my life out of desperation.

    If I take medication (antidepressants or others) it tends to get worse (the needles sensation), although the depression gets about 10% better after a few weeks but I start having all the side effects of the medication, including cognitive and memory impairment side effects and that usually is enough to have me quitting the medication.

    I can't get out of bed no matter how hard I try, and I've been like this for 19 months. Have the stamina of a 100 year old. I only wish I knew what to do. A recipe of wellness. Something I could pursue assured that I would find relief by doing it.. no matter how many years could be needed.

  • I have not had any itching. Burning sensation in my head/brain but after one of my operations i had this feeling in my head where it felt like the mucles/tissue were tearing every time I turned my head. I tried to explain it to the nurse but not long after surgery and having weak muscles in the face it can be difficult to explain things. All there did was give me paracetamol and hoped for the best.

    I guess it was after affects of surgery I suppose. The feeling did calm down after a while. I used to lie on my tummy a lot while watching TV so it was like I was looking up while lying down, if you know what I mean. After a few minutes I would have to move fm that position cos my head hurt. I dunno if it still hurts when I do that because I havent tried it out for ages now. Dont think I want to either. Plus, I don't think I really want to lie on my tummy much now anyway cos it can feel uncomfortable because my shunt tube runs down the front of my chest.

  • After 17 years of struggling with VP Shunt malfunctions that leads to an extensive series of seizures at age 18 (I think), I've dealt with something quite similar to what you've described, Muddled.

    You are not alone. <3

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