Who has noise sensitivity, and what IS it?

I've seen many comments on the forum with people citing noise sensitivity as a symptom. What is it - exactly? I hate noise. It drives me mad - neighbour noise in particular (right now, as I write this, I am sitting with headphones on, playing thunderstorm sound effects because it's the only thing that can drown out my neighbours!). But is this what you all mean? Is there some other kind of noise sensitivity? How does yours express itself?

I'd really love to know what this means to all of you who have it. So please, share.........

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  • hi chancery. i can resonate with ur dislike of noise as i have light & noise sensitivity. i've always understood that my ME/CFS were causation of this. since commencing on b12, i have more resilience to both, but especially to noise.

  • Hi Hidihi (that still tickles me, writing that!) I have a little light sensitivity too. I had it very badly during one of my anti-convulsant medications (Lamotrigine) but as that was giving me one very long migraine, that's hardly surprising. I've never been a fan of noise, I admit, but it has definitely got worse. On my cranky days (which are all too common, I am ashamed to admit), I will snap at sneezing, coughing and just about any workaday noise. And please don't start me on snoring! Snoring and insomnia are NOT a good mix.....

  • My experience was really on the neuropsychiatric end of things - was just like a rabbit in headlights because everything was so loud and I'd stopped being able to filter out noises that I didn't need to hear - basically it was like a type of psychosis in which my brain just couldn't cope with places where there were a lot of people - even if they were all sitting down. I play bowls part of which is socialising over tea and at the worst point I just couldn't go inside for tea - sometimes even being on the green I would feel totally spaced out and not know if I was coming or going.

    All very strange as I grew up in a household where both TV and radio were on continually and was infamous for being able to switch off and fall asleep anywhere.

    Can imagine that others have very different experiences.

    Not related to B12 but I have a friend who has just started using hearing aids and he is experiencing some hypersensitivity to particular frequencies - even at quite low levels some frequencies are physically painful for him - includes one used by blackbirds ... and I would imagine that some people's experience would probably be like that.

  • Now that is very interesting, Gambit. I remember before, way back when I was not long on the forum, comparing notes with you on 'psychiatric' effects and I remember how alike we were. Looks like it is still true! I suffer from what I call 'adult onset autism'. Not a real thing - I hope! - but a condition I invented to explain my frankly bizarre behaviour in social settings. I VERY seldom get into social settings for this reason alone.

    I recently went to a local TED talk purely because my other half was in it. I felt ashamed of never stepping up to the plate for him (he does a lot of performance work) so I made myself go. I was NOT looking forward to it, but kept telling myself ' How hard can it be?' I watch TED talks all the time, so I really thought I could do this.

    How wrong I was. When I got into the (very small) 'space', which was a room above a health food shop, I immediately felt oppressed by all the people. They made us introduce ourselves to the person next to us. Oh, the pain. I really could not handle this. I felt like a four year old being forced to fraternise!

    By the time we got to the interval, and I had to go into the area where they were serving food, I told my partner I thought I would have to leave. I felt as if I could hear every single conversation, as if they were all of equal importance. I couldn't discriminate. I couldn't separate out the noise, or the colours or the movements or anything - hence my feeling like I have adult onset autism. It's as if I cannot just take in what I need to; everything must be paid attention to, and I just can't handle it. Literally, too much information. I just get overloaded. I become sweaty, panicky, harassed. It's awful.

    I don't know if it's a medication problem - certainly Carbamazepine has made it a lot worse - or if it's a symptom of some other condition the drug has created (like the hypothyroidism it has kindly given me), or whether there is something else wrong entirely. Only time - and coming off carbamazepine, if I can manage it - will tell.

    But certainly, I didn't have this so acutely previously. It's something that's got worse with age, and something that is definitely wrong. It's not just I don't like crowds, which I freely admit I don't, there's something deteriorating in my processing of information from the outer world. Not a cheerful thought....

  • Really sorry to hear that things are bad for you - hope coming off the carbamazepine works for you ... not sure where you have got to in terms of any B12 treatment but may be that you need to up it a bit more if you are treating yourself.

    If I feel anything like this coming on now - which is rare - then I immediately reach for the B12 because I know that is what is going on. These days I sometimes find myself in the middle of a conversation with someone and thinking to myself - a year or so ago I couldn't have had this interaction.

    There are some quite strong links between B12D and autism/aspergers but that relates to B12D during early development. One of the defining characteristics of autism as I understand it is around the concept of mind and inability to impute motive to an action.

  • Oh they're not bad, Gambit, not right now - I'm used to this. Please don't fret. I'm feeling more optimistic than I have been in a long time. At least I am not in pain (hoorah!) and, so far, fingers crossed, I HAVE been able to keep moving this cursed drug dose down.

    I always feel bad dirty-mouthing it, because it was an absolute lifesaver when TN first struck, but Oh God, it's a nightmare in terms of side effects. I suspect I've had them worse than some others. It seems to have thrown everything at me.

    No, my biggest problem right now is in trying to get my doc to see a bigger picture here. He just wants to treat my TN, end of. Me, I think something bigger is afoot.

    But Leila has opened my eyes, I've just been and had a read of Hyperaccusis symptoms and it's me to a T. It never ceases to amaze me when you discover you've had something all along and didn't know that you did, you just knew something was wrong. It's actually cheered me up, because I felt convinced this was a personality disorder, when in fact it's more to do with a physiological problem - as usual.

    What it has got me wondering about though is how this nerve damage has come about. And given that my doc doesn't believe in my B12 problems in the first place, I'm not sure how he'll handle this. I'm frightened to even mention it to him. I think he thinks I just go find stuff on the internet to diagnose myself with, when the truth is I'm actually doing his job for him because I can't face trying to get him to take me seriously. Can you imagine trying to explain my 'adult onset autism' problem to him - or any doctor? They'd just think you were neurotic. Ah, nobody can tell me that there's no sexism in doctoring.

    But I keep thinking where has this nerve damage come from - the B12 'issue' or is this gluten related damage that goes along with my TN? Either way it scares the bejesus out me to think there might be ongoing damage that isn't being addressed - and it's all in my head, physically, not metaphorically!

  • chriskresser.com/jaw-pain-3...

    Is this the same as TN ? Presume.... a rose by any other name would smell as sweet.....

  • No, it's a different condition. TN is a neurological problem, caused (they think) by hyperexcitable nerves. In effect, when you eat a piece of apple and your brain registers 'hmm, sweet, slightly tart, juicy structure, crunchy, must get teeth to munch', my brain registers 'Oh no, a red hot electrical wire in the face, shriek! Must send intense warning pain signal'. It also does that for slight breezes, a light brush, a mist of water, or even, in my case, just a temperature change of say going indoors from out. Unlike TMJ etc., you don't have to be doing anything for TN to fire off it's bolts of bring-you-to-your-knees pain.

    It's not physical, unless you count the stimuli, it's the trigeminal nerve overreacting to an external stimuli.

    Completely changing the subject, Marz. Do you know if there is a Sjogren's Syndrome forum on Health Unlocked? I had a look last night but could only find an Australian one. I find searching for other forums really HARD. God knows why. I don't know if their search engine isn't good on here, I am crap at using it, or none of the above.

    I made the shocking discovery last night, in the most bizarre way possible, that TN and Sjogren's Syndrome have a strong connection. I had already gone to my doctor weeks - months - ago and told him I thought I might have Sjogren's and he had ignored me as usual. I had zero idea the two things were connected. I don't know whether to laugh or cry...

  • You could PM MaryF on Thyroid UK. She is a sufferer and very knowledgeable and would point you in the right direction....

  • Ah, thank you. Will do. I've joined the Australian one in the meantime, just to pick their brains!

  • I'm saying that, but how do you find someone to message them? I realise I don't have a clue!

  • If you jump to the community of your choice using the My Communities dropdown, you can look to the right and see a link in blue to Find members >. That's the way to do it! :-)

  • Many thanks, Rod - much appreciated!

  • Just adding in for those reading this in the future that there are private drs in the States who report good results with some ASD children injecting B12. One study has also found low B 12 in asd brains, and another recently has found a treatment effect from b12. But it wouldn't help everyone, there may be a sub section of autistic children born to mothers with undiagnosed b12 deficiency, some of whom have undiagnosed autoimmune gastritis, or go on to develop it. Their physical problem would be missed because all probs would be put down to their autism diagnosis.

  • Gosh. About a quarter of children diagnosed with autism have sensitivities to noise etc and it is very very similar to what you describe, Gambit. This quartile also comes with gut problems and anxiety. It does sound very much as though B12 may be a major part of their problems... some doctors in the states inject B12 for them and some children have had improvements, but I don't know of any proper studies looking at parietal antibodies etc etc -

    one of the problems with this very anxious quartile is that they are also anxious about needles and hospitals, so they're unlikely to be volunteered for research.

  • Yeah, Asp, that's why I christened mine 'adult onset autism' because my symptoms were so eerily like those of autistic children - although only in crowded settings, of course. But it does feel like it has to be significant somehow and not just a coincidence....

  • It has to be fundamentally connected. Your symptoms, your thyroid, your B12, my thyroid, my Asperger's child with his symptoms just as you describe - and like the B12 deficient boy whose case I posted here recently (not that hyperacusis is mentioned for him) .... - my son is euthyroid, so I think the common factor has to be the gut, the malabsorption, the B12, former low iron, maybe some other missing nutrient which works with the B12? I think mainly it must be the B12. Yet you are on high levels of B12, Chancery.

    Sorry, I'm babbling. This is so frustrating. We're so close. Could there be something preventing the B12 from being fully effective for you, Chancery? A MTHFR defect, something like that? Injecting the wrong kind of B12?

  • Ah, I've just asked Gambit about the MTHFR gene thing. I've looked at it a couple of times now and felt that it was too severely symptomatic, in that it turns out quite dramatic birth defects. I haven't yet seen anyone talk about it for more 'simple' conditions like thyroid or B12 issues. It seems unlikely to me that an adult could get through life with it without something very noticeable popping up.

    That said, I never got Homocysteine or MMA measured when I should have and now it's too late (my long sad tale of woe, missing those). But no, I don't THINK I can be on the wrong B12 either since mine worked quite dramatically. Sending something like TN into remission is no mean feat, so I reckon it's working okay. I hope...

    P.S. Sorry, that lot's a bit disconnected. I make your 'babbling' look like a university thesis!

  • No, I get it Chancery. We're all groping blindly in the minotaur's maze, hoping one of the others gets eaten before we do (and so we get a chance to work out the code). Gosh, I didn't mean that to imply we are all selfish, just the awfulness of what we are going through. Happy to be eaten.

    In the States there is a lot of discussion of the wonderfully named MTHFR gene, and it aim't necessarily major, in fact I think variants of it are very common. No doubt it will be big here soon, and the Daily Mail will do a double page spread on that day. Don't rule out the MTHFR. (That could be a T shirt - better than Keep Calm...)

    Hmm. So - we're looking for a possible common denominator for those with social anxiety/hyperacusis. Could it be B6/magnesium after the B12/iron has been supplemented then? How are you on that?

  • The Minotaur's Maze - ooh, I like that one, classy. Certainly makes my bumbling about look more dignified!

    And I am positively looking forward to those T shirts. I was just saying to Gambit that MTHFR always looks like a euphemism/abbreviation for a rude word that I am only allowed to say when I drop something on my toe. Not that I would, I am far too ladylike.

    My iron is great, always has been as far as I know, although I have some sort of anaemia - no, I don't understand it either and neither does my doctor, who asserted, 'Well, you don't have anaemia' with the blood tests saying "low haematocrit" right in front of him. He obviously never reads doctor Google. B6/magnesium I wouldn't touch after giving myself nerve damage (thankfully temporary) in my hands in the 80s. You know, I'm saying that, but what if it wasn't due to a B6 overdose but was actually B12 nerve damage? Spooooooooky....

    No, realistically, it was the B6/magnesium. So, no, I wouldn't supplement that again. But as far as I know, which means I know nothing, I am not deficient in either, and I do supplement them in a multi-vit.

    Nope, my money is still firmly on Hypothyroidism, longstanding but undiagnosed, or gluten sensitivity as the two culprits for my illness/es. Trouble is, did gluten sensitivity cause the thyroid problems, if they exist outside Carbamazepine disruption? Curse that Carbamazepine to hell!

    I'm on 300mg now, so far holding up pain-wise, although I got the usual withdrawal twitches today (they always make me REALLY nervous). If I can just get off this bloody drug I can see what is real and what is side effect and THEN I might make some progress.

    I reckon the Hyperaccusis is being aggravated by the Carbamazepine (no, there is nothing it can't do), but it's definitely not wholly responsible. Again, got to wait and see. I keep wanting to hurry this withdrawal up, but it can't be done - too risky. But it is VERY frustrating....

  • I found this... tantalising. questioning-answers.blogspo...

  • think it was marre who posted an item on methyl colbalamin treatment in autistic children a few months ago - if I remember correctly the link was related to MTHFR and an inabilty to transform B12 into methyl form - and ditto for folate. The treatment helped with but don't think it helps universally.

  • Yes, you'd only expect it to help with the 25 per cent anxious-gut probs-sensitivities quartile.

  • I've seen the MTHFR gene issue bandied about quite a lot (on the thyroid forum as well as here?), but it's always seemed unlikely to me (for adults), since it seems to produce birth defects, more than anything, and would be something that would be seen in children, rather than something middle aged women would be suffering from/with.

    Homocystinuria seems to be the only relevant thing for adults, but even that seems too severe to have gone unnoticed through life. Any idea why people think it's relevant to these conditions (I'm sure I've seen it in both thyroid and PA), Gambit?

  • I think there is probably a huge range in the extent to which MTHFR switches of the bodies ability to process non-methyl forms into methyl forms and hence there probably is a huge range on when symptoms and problems start to kick in but autism is one of the birth defects that can result because of the effect on the development of the brain.

    It is also possible that some early B12 deficiency problems are missed and result in other forms of autism for the same reason.

    Personally I think that, just as B12D can affect the way the brain operates - making some processes less effective and even resulting in lesions - which is when you are getting into the realms of dementia. The brain is a very complex organ so not surprising that some of the damage ends up mimicking behvioural problems found in people who have had damage since birth/pre-birth.

  • I'm going to look into it again, more thoroughly this time. Am I right in thinking that thyroid UK does an offer to arrange the gene testing for MTHFR? (Always looks like an abbreviation of Samuel L. Jackson's favourite word that I am not allowed to write here!)

  • Had always assumed it was 2 words :)

    Pretty sure that MTHFR is something you can't get on the NHS but don't think its that expensive a test to have done privately.

    If you had problems with folate levels it might be worth it but if folate isn't a problem then that would rather imply that MTHFR isn't a factor

  • Ah, I didn't realise that. My ignorance raises its ugly head again. No, I have no problem with folate. Thanks for telling me that; I might have wasted the money!

  • I can sympathise over the loud neighbours, we have had many years of listening to loud music, shouted arguments, DIY at all hours, and don't forget the screaming of children! So, yes, I am sensitive to noise, and like you, use headphones to try and block it out. We also have buses running past the house now, two at a time every 10 to 15 mins. When we moved onto this estate, many years ago, it was quiet and peaceful, no buses or lorries, and much less traffic. In summer with the windows open it's bedlam! Motorbikes, cars, buses, people waiting for the buses and talking away on their mobile phones!

    I also don't like the loud music that accompanies lots of TV programs, or in shops and restaurants. A walk in the woods is the most peace I can find, birdsong I enjoy, and the breeze rustling the trees. So if that is being "noise sensitive" I suppose I am. MariLiz

  • Hi Mariliz. Right back at you, with your terrible cacophony - I know exactly how you feel. I have a flat in a four storey 1950s council house which has been built in a quadrangle. In the back garden there is a private playpark for all the neighbours' children, and there's a lot of them! During the summer months they are out there 24/7, it feels like, accompanied by yelling, shrieking, crying, singing, and some new noises there isn't a name for yet. But oddly I don't mind them as much as their parents.

    I have three immediate neighbours, one to my left, one to my right and one down below. Below is fine, occasional group of lads round and that's about it. On the right is fine too, despite having young children and some very vocal relatives, but our neighbours on the left are awful. Right now, as I write this, they are playing some repetitive Euro-techno at too high a volume, as usual. The walls are paper-thin so it might as well be playing in my room. They can do this for hours, volume up and down, guffawing friends round, smoking and talking on their balcony, which is two feet from mine so I can hear it all. And to cap it all they are Russian or Middle European, which just makes me feel like a racist every time I swear at them, which is frequently!

    I want to be tolerant while every inch of me wants to stalk round and yell 'If you don't know how to behave in a foreign country, don't come here!' Which is completely absurd as I have had plenty of noisy English and Scottish neighbours - sadly you get noisy b*stards everywhere.

    Headphones - the only answer to modern life.

  • I spent an entire trip to the cinema with my fingers in my ears because I couldn't cope with the volume of the film music.

    Certain pitches are incredibly painful even if they are not really loud eg whistling, people who screech.

  • Oh yes, SB, the screechers. The children who let rip in supermarkets, the teenagers with shrill laughs that they insist on sharing. I always seem to get stuck beside them, or following them round a shop. I confess I have actually changed my route just to avoid annoying noisy people!

    As for the cinema, I stopped going years ago because I couldn't stand the talkers, the sweet throwers, the fidgets and seat kickers. Nope, never mind the overloud soundtrack - I can't stand my fellow humans!

  • When I was first diagnosed with B12D, I hated to be in crowds and noisy parties. I would isolate myself and could cope one-on-one. Kids running around and multiple conversations as well as the TV being on drove me nuts.

    After 4 years on B12 injections (first hydro-b12 monthly and now cyano-b12 weekly) along with a regime of folic acid 2.4 mg, b6 100 mg, multivitamin, TMG and biotin I noticed most of the issues fade away. Eight years on things are much improved but the progress has been very slow. Looking back, I can see progress.

    At the worst times, I think I lost the spatial awareness in my brain of where the sound was coming from. This is very important, I think, for my brain to first identify and then ignore this source of noise, or conversation. This is needed to be able to focus attention of the conversation I was in.

    I've since forgotten which part of the brain processes the differences between the two ears but I recall it has a high volume of nerve cells and is prone to nerve damage from B12D.

    Also my short- term memory was impacted. This has not returned as I had hoped but I am coping. A neuropsychologist friend recommended that I try to measure each day my short term memory by several mental tests available on the Internet. He also suggested majong and timing myself. No matter whether I win or lose, the time involed is the metric. The longer it takes, the worse the condition.

    I have kept a log book of various symptoms and was able to isolate several brain "oppression" symptoms to eating either gluten or dairy 24 hours earlier. I'm now gluten and dairy free and the instances are fewer.

    I still will pop a couple B12 sublingual 60mg or take a 5-hour energy drink about 30 minutes before a meeting. These last a couple of hours. The other days I had 4 back to back meetings and, although I was tired at the end, I didn't have any symptoms.

    In the end the damage has occurred in the brain by the time one becomes "aware" of the issue. Some repair may be possible and I think I am better than I was at the "bottom of the pit" but I've not fully recovered yet to where I was before I became deficient.

  • Yep, pvanderra, as I said to Gambit up above, I have the antisocial personality thing; I call it adult onset autism. I can't cope in crowds or in multiple stranger 'interfacing' (as they call it nowadays). I would not make a good PR person!

    Very interesting, what you say about it actually being a potential nerve damage issue. That's food for thought. I am also currently considering gluten as an issue. I have been for some time, but negative coeliac tests keep making me think it's a non-starter, even while my instincts tell me it's the main cause. I'm very conflicted, because facts are not gelling with feelings here!

    Unfortunately, despite having monthly B12 injections, these symptoms of mine seem to be getting worse, which leads me to think it's not a B12 issue, but the whole thing's being clouded with drug side effects, so I'll have to wait till they're out the picture before I can see what's real and what's not.

  • Crowds make me feel really aggressive as I can't cope then I feel guilty for being that way.

  • Oh I know that feeling, SB. I actually get punchy if too crowded and have to take myself out the situation to stop myself behaving like a chav! I have a limit and it's not long. I live in Edinburgh and nowadays never go into the town centre during summer if I can help it. Tourists, pull-along suitcases and me do NOT mix.

    Now, if I'm forced to go to Primark or somewhere, I literally plan it like a military assault: 'Right we go in, get this, straight out again'. When my local retail park announced they were opening a Primark I welled up with tears of joy. It's very sad....

  • Glad to hear its not just me, Chancery.

    I have a real problem with noisy eaters as well....so many trivial things really upset me these days.

    People humming makes me want to explode as well.

  • Humming - at last, something that DOESN'T bother me. Hooray! I can genuinely say I can't remember ever being annoyed by humming. Thank God, I was beginning to think every noise on the planet annoyed me. I was agreeing with so many of these comments it was like I'd written them.

    However, just to spoil it, I can't stand the noise of eating. I admit I have some days much worse than others. Sometimes my partner can munch away relatively cheerfully without me cringing, but other times I'm on his case like the worst nag in the world. His sneezing and coughing too. Particularly if he does it suddenly. It always scares me like a shot's been fired. Instead of cheerfully wishing him a gesundheit, I'm snarling, "MUST you?!" Sometimes I don't know how he puts up with me. I define the word grouchy.

  • Thank you so much for this, it gives hope. If you were taking biotin, then it is possible there are some other nutrients involved in helping improve this as well as B12, and there was a slowly increasing absorption. Maybe B6 and magnesium help with hyperacusis too.

  • I really struggle with noise and have done so for many years. I have been told that I am suffering from Hyperaccusis, which means that I hear sounds louder than they are due to nerve damage in my ears because of very late diagnosis B12 Deficiency.

    I carry ear plugs with me at all times, in my purse, and I often use them like I did today when we were in a restaurant celebrating our grandson's 21st birthday when a baby kept screaming. I put my earplugs in and didn't remove them until the baby had been taken out. I just can't stand the noise. It hurts my ears and it upsets me.

  • Hyperaccusis? I've never heard of that, Leila - thanks for that info; I'm going to look it up. Pvanderaa mentioned that idea up above, that nerves can be damaged in the ears. I must admit I didn't know that - it's a very interesting line of thought.

    I have often left places because of noise from children. It makes me feel bad because I know the child generally can't help it, but it's like nails down a blackboard sometimes. I sometimes feel like Hannibal Lecter - able to hear the single cough in the audience or the off note in the orchestra. I haven't yet resorted to killing anyone and eating them for it - although that may come!

  • I don’t know how relevant this is, as I have not been diagnosed with PA (was tested and told I didn’t have it, but I do have a sensible GP who has put me on B12 injections anyway).

    I really struggle with noise, but there is no way on this planet that I could possibly explain to a doctor how I know that it just isn't "right". I hadn’t ever thought of it as a symptom of anything really, maybe it is, who knows - I just think I have turned into a grumpy, old woman.

    I like the TV being turned up loud when I’m watching it, yet I cannot cope with a bird chirruping at dawn when the windows are open. The noise just goes right through me. My poor husband just "breathes" loudly when he is asleep, and each breath actually makes me jump. We have neighbours with small children - their general play noise is tolerable, but I really cannot deal with some of it - there is a certain pitch or something that one of them has, and it is awful (no-one else has a problem with it, just me). I can't bear to be in a crowd of people who are noisy either - whether it is out shopping, or even family visiting.

    I have had to wear hearing aids for a few years now, as I have permanent damage to my hearing which was originally thought to be related to the loud music I listened to as a teenager. At my last test, however, the audiologist reckoned that my Hashimoto's could be to blame. Ha ha, I can't imagine a doctor accepting that any time soon.

    I always assumed that my lack of tolerance to some noise was related to my hearing loss, but I really don't know.

  • Yes, it absolutely could be related to hearing loss, HB. I was just reading about Hyperaccusis on Leila's recommendation (on the NHS site, as it so happens) and they say on there it can happen due to hearing loss. I think the theory was that the brain recognises the loss of hearing and tries to compensate by over-amplifying certain sounds - this is what causes the sudden shock and awe at said certain sounds.

    If it's any comfort, sometimes my partner will do a random snort when he's sleeping and it never fails to make me jump, and this is from a man who snores more than he breathes, so I should be used to it by now!

    But I'm really curious as to why your audiologist thought Hashimoto's could be to blame. Did he tell you how that worked or why it would happen?

  • Several specialist doctors that I've seen recently (including a cardiologist, neurologist, orthopaedic surgeon, ophthalmologist plus a few others, as I now collect consultants as a hobby <sigh>), plus the audiologist and my dentist, have all said that Hashimoto's could be responsible for a lot of my problems as the thyroid controls so much in your body. I just wish someone would tell the endocrinology department - which is full of doctors who don't seem to understand that.

    Whether or not it can actually be blamed for my hearing loss, I don't know. I might ask more questions when I have my next hearing check, and I shall ask about the "sensitivity" stuff too. I have worn hearing aids for around 10 years now, I think. I was diagnosed with Hashimoto's nearly 4 years ago. I've only been having B12 injections for a few months, although almost certainly needed them long before.

    My inability to tolerate certain noises issues were certainly not a problem when I had to start wearing hearing aids. They are digital, and my hearing feels like normal. The sensitivity issues are more recent, and have not improved with the added B12.

  • Yeah, I'm with the ologists, I must admit. From what I've read about thyroid, its powers are many and all-seeing. It can control everything from your appetite to your hair greying; I call that pretty extensive. So no, I wouldn't be surprised if it could affect hearing, somehow, in ways no-one yet understands (especially given that they don't seem to understand much).

    Any ideas why your sensitivity is getting worse if it's not B12 related?

  • I'm not sure if the sensitivity is actually getting worse as such, I just wasn't aware of it being "something" until I realised that other people were experiencing the same things (basically the same stuff people have written about on this thread). I just thought I was suffering from Grumpy Old Woman Syndrome.

    I'm still pretty new to getting the B12 injections, so I have no idea if it will make any difference to it all.

  • Well hopefully they do, HB. And I know what you mean about the grumpy old woman feeling. Leila's diagnosis of Hyperaccusis has to be one of the most cheering things I've read in a long time. I was worried, frightened and ashamed of what looked to me like social problems. I would say to my partner (between apologising) that I couldn't understand how I'd got like this. To know it's a real condition, with a name, and that I fit it almost classically is oddly cheering. Although I suppose I should really be worried about what's caused it and if it will ever improve.

    Nope, I still feel too relieved! All I need to do now is work out a way to tell my doctor about it. Some time far from now, when I've rustled up the courage to face more sneering disbelief and exasperation...

  • Hi again Chancery, just catching up with your reply to my comment and reading the other comments on this post. I am exactly the same as you, my hubby snorts when falling asleep, and many times I am shocked awake by the sudden sound! I've told him he'll give me a heart attack one day! Jokingly, but it does leave me with a thumping heart. Will look up Hyperaccusis, and investigate it more.

    We went for a meal last night with another couple who are good friends. In the pub/restaurant there was a group of about eight celebrating a birthday. The only time they were quiet was when they were eating. They whooped, shouted, and squealed their way through the entire evening, making it so hard for me to concentrate on our own conversation. I came home with a thumping headache. Maybe I am just becoming less tolerant as I get older? But it is interesting to think there may be a medical reason for this hypersensitivity to noise. MariLiz

    Ps I fully understand the loud music issue, we had that to extreme levels when the son was living there. It is just a thump thump thump of bass that goes on and on. Have you tried complaining to the Council?

  • Oh yeah, Mariliz, the dead of night heart attack. I've been with my partner nearly forty years and I have loathed him during the night for those heart attacks - with deadly loathing. I wish I could say I exaggerate.

    I suffer from insomnia (although much improved since dropping my drug doses) and I also get very hot at night. I ALSO, because I don't have enough going on in bed, and not in any good way, get what I call adrenalin surges. I'll just be nodding off to sleep when - wham! a shot of adrenalin wakes me up, like I've heard a loud noise. It's awful; I dread them. So if he does one of his sudden snorts and startles me awake I can literally lie awake till dawn.

    And I sympathise completely with the distracting people in restaurants. You won't believe this, but I stopped eating out entirely and now only eat in McDonalds (if I have to) because I can get up and move seats easily, or, if that doesn't work, I won't have wasted a load of money having to sit through some awful texting, yelling, crying, or just plain no-indoor-voice person's lunch. I couldn't stomach wasting money on what was becoming a nightmare for me every time. When you consider that I got into debt not once, but three times from eating out in restaurants (nope, not kidding) you can see what a change I made to my lifestyle, just because I could no longer cope with being around people.

    As for going to the council, I actually applied to be rehoused due to not being able to cope with the noise. I cited my trigeminal neuralgia and the drugs as the reason, but I wish I had known then about Hyperaccusis. I didn't realise my 'adult onset autism' had a real name and was a real condition. I just blamed my self for being a weirdo. Hey, I'm a woman, it's what we do.

    I wish I had the courage to bring it up with my doctor, but I just can't face it. I'll just have to grit my teeth and carry on being a recluse!

  • YES noise sensitivity...it started early, accompanied by emotional volatility, slight hand tremor, tinnitus, social withdrawal, gastointestinal problems, severe fatigue, short attention span....developed over the course of a maybe 2 years following laparoscopy. I'm sure I've had low levels all my life tho.

    I remember trying to decorate the Christmas tree and crying because all the carols and lights were excruciating.

    I get frequent migraines. I no longer like to be touched.

    I used to be a naturally affectionate, sensual, intelligent person with a lot of focus.

  • Hi Allyson

    "developed over the course of a maybe 2 years following laparoscopy. "

    Did you by any chance have nitrous oxide anaethesia? Nitrous Oxide can inactivate B12 in your body.

    gov.uk/drug-safety-update/n...

  • Hello sleepybunny, that has crossed my mind but I am unsure what they used in the anesthesia. What's remarkable is that my personality changed dramatically in the months after surgery..I was always gentle and patient, but all of a sudden I was flipping out on everyone.

    My small intestines were affected by the surgery..I have gastrointestinal illness which exacerbates the B12 deficiency. The surgery just escalated that.

  • I hope b12 testing is a standard part of presurgical blood work..if not it ought to be!

    I also had 6 major surgeries in my teen years, that's when the restless leg-type tremors and serious depression started! I went from young and strong to exhausted and weak almost overnight and never really recovered! Doctors said it was stress.

  • "I also had 6 major surgeries in my teen years"

    I think it's quite likely you had nitrous oxide at some point and if you did it might have led to restless legs and personality chnges...it can be a symptom of B12 deficiency.

  • I don't think it is, Allyson. In fact I remember Sally Pacholok saying in her book that surgeons paid no attention to it at all. Certainly that was so in my case. I reckon I must have had a B12 figure of about 15 after surgery! Two years later it had only managed to climb to 384, which seems respectable, but when you look at the damage deficiency had done during that time - it definitely wasn't. No-one ever asked me about my diet and no-one ever measured or discussed my B12. It was me who had to ask for it, then fight for injections when I was found to be in the grey zone.

    And your teenage history of ops sounds like a clear-cut B12 deficiency - you poor thing.

  • Ridiculous, isn't it! That would be such a convenient way to screen!

    My grey zone is pretty wide: I'm positive I started getting tremors, fatigue, weakness, and psych changes (monstrous temper) at 408! Tremors, at 408!

    I have signs of full neurological involvement and to my knowledge have not been below the low 300s.

  • Oh, I can believe that. Because I didn't have classical B12 deficiency symptoms, like the tingling hands and feet (the only symptom doctors seem to recognise), my doc didn't take it seriously as a possibility at all. It was only after I started getting injections that I even realised what else had probably been caused by it. I had terrible 'urge incontinence' for example - when I needed to go, I REALLY needed to go. That got much better after injections. Likewise, I came out of the 'black hound of death' depression that I'd been in so long I didn't realise I was in it. Most importantly though, I got remission from trigeminal neuralgia, an incurable degenerative disease. Really heavy drugs hadn't been able to shift that, so as far as I was concerned that was a living testament to the deficiency's existence and to the power of B12.

    My doc, however, STILL doesn't believe in it. First it was a placebo, and when even he had to admit a placebo effect couldn't last that long he changed to 'it's a coincidence'. He firmly believes that this is just a normal TN remission. He, of course, has no explanation for why I felt a noticeable drop in pain immediately after my first injection and more as the injections went along. The world's biggest bloody coincidence that coincides to the day of starting injections! But you know docs, they have to have their cast-iron rulebook or they feel that they are being sucked into a vortex of faith healing.

  • I'm so happy your TN is in remission! I've read that is very painful. I have tremors in my face (lips, cheeks, lower eyelids) and my whole face feels heavier and less animated than it used to.

    I have bladder issues too. Some of it is due to endo, some interstitial cystitis, some prediabetes, but I wonder if there is a neurological component because I can't feel things so much.

    I understand that doctors tend to be conservative. What I don't understand is when they turn their backs on likely causes and sensible explanations and make you feel crazy. I just don't get it.

  • I know, exactly, right? What IS that about? Mine actually argues with me over practically everything I bring up, and I am NOT big on alternative therapies. It's not like I go in there and ask him what he thinks of me trying some homeopathy or chanting. I go in and ask him about testing for deficiencies, or to see a consultant or some such, and because it's not something that is 'by the book' (i.e. there isn't a blood test proving I have the condition without all doubt) he will argue bitterly about it. He even goes back completely on things he's said the visit before. Changing the goalposts is his favourite pastime. He drives me nuts. Have you noticed though that that is the single biggest complaint about docs on all these health forums? It must definitely be something in their training, or the way the NHS is run. That said, Americans seem to have the same problems, so maybe it's a fault with medicine itself in the West.

    But by the by, you have been very unlucky with your health conditions, haven't you? That's a really nasty collection you've got there.

  • I'll offer you a virtual hug, Allyson, no touching involved, because I do know how you feel. I'm used to it now, but that doesn't stop it getting very lonely sometimes.

    I gave up having a Xmas tree, and (traditional) Xmas for that matter, but it was easier for me, no family or children to disappoint. But it does make a huge difference if you can lay out the seasonal and celebration times to suit yourself. Now I only do what I want and what I enjoy. The biggest problem for me is neighbour noise at Xmas and new year. Always parties - lots of parties. This year I hope to go away, preferably up a mountainside in a nice isolated cottage!

  • Thank you kindly Chancery! I find jewelry making is a nice quiet activity..unless I get tremors and spill beads everywhere! I've given up a lot of things in the past few years, and I kind of won't let myself think about the future..I dream about having a quiet little cottage somewhere! I hope you have many things you enjoy:)

  • Ah, I'm with you on the cottage, Allyson, except mine is a shed in a corner of a field - I don't know if that's a low ambition threshold, minimalism or just me being realistic about what I can afford!

    And I can sympathise with the hand tremors, although mine are all drug-induced. I'm doing withdrawal at the moment and I have about four days or more each time of shaking like a leaf, unable to do anything small, delicate or well-coordinated. I tried to get grape hyacinth seeds out the pods this morning. That was fun!

  • I used to dream of my own cave!

    I did several years of weaning off paxil. No one believed the dissociation syndrome could be so bad, they were like, "just stop cold turkey and ride it out for a weekend." I had 5+ years of those weekends.

    I hope everything goes smoothly for you!

  • Mmm, a cave. The only thing wrong with caves is they tend to be cold, wet and dark. Being Scottish, and having a father who, on reflection, seemed inordinately fond of caves, I think I've seen too many of them and they've lost their glamour! However, that said, some of the ones I've been in abroad were pretty dramatic, and dry...

    I don't know Paxil - an antidepressant? Did it take you five years to finally manage to get off it? How awful. Was it a bit like chocolate, impossible to shake free of? I'm not being entirely facetious - chocolate crucifies me, I kid you not. I've only managed to stop eating it for a fortnight or a month before I fold and buy four packets again - a bit like your 5 year weekend, with weight gain as a bonus extra.

    But I do know exactly what you mean. I'm weaning off Carbamazepine 1 tablet a month, due to 'speed up' to one tablet every three weeks, because I can't stand the way all these ailments are getting worse and I'm desperate to come off it. But every time I talk about the withdrawal symptoms to a doc you can see that long-suffering face of 'oh she must be kidding'. I don't know quite why they underestimate the effects of Carbamazepine. Even when it landed me in hospital with low sodium the doc was still underwhelmed at the idea of me having difficulty withdrawing, and that was taking me off the whole dose, cold turkey.

    The withdrawal symptoms for that were fabulous, if short-lived. I had a psychotic episode, at home unfortunately, because I would like to have seen the hospital deal with it; might have wiped the smug nonchalance off the consultant's face.

  • I always picture a dry cave! If it's my imagination:-p

    The paxil wasn't an addiction. I hated taking it and wanted to leave it alone, but somehow it alters your neurotransmitters and when you stop taking it, you get bizarre symptoms, both physical and psychiatric. The only way to relieve them is to take paxil again. Otherwise you wait it out and hope it goes away.

    It can take years for people to wean off. Most doctors aren't really aware of this or of the withdrawal severity. They'd give me that long-suffering look too!

  • Oh, I know that look only too well. I think it would be good training for them, as part of learning to become a doctor, that they have to go on all the most commonly prescribed drugs: 1 antidepressant, 1 anticonvulsant, 1 blood pressure drug, a thyroid medication, etc, etc, etc. Maybe then they wouldn't be so glib!

  • I wouldn't wish anyone to actually be unwell (hmm, but there are a few doctors who could do with experiencing a couple of hours of some of my symptoms) - but I sometimes thinks that people who are generally well have absolutely no idea what it is like to have a chronic illness, and just how debilitating symptoms can be.

  • I know that's the case, BM, simply because I've done it myself. When I lived in Orkney, I knew someone who had CFS. I didn't believe it at all. In fairness to me, I think she DID use it as an excuse to potter about rather than work, because I saw zero evidence of her EVER being tired. And I'm sure it is wide open to abuse. But nevertheless I didn't entertain it as a real thing. I also knew someone with MS and she definitely DID have the condition, but again, for some unknown reason, I thought she was just dramatizing herself. I have no idea why now, except I had some concept that it was like CFS, just a 'made-up' condition.

    The really sad, weird thing about this is, I knew someone in the 80S with MS and he actually looked ill. I think perhaps that was why I didn't believe in this woman's condition; because it didn't show as severely. But in retrospect, I can see now she patently did have it, and I judged her purely on the grounds that she didn't 'look' as ill as this man. I can only say I'm glad I never made any nasty comments about her and kept my opinions to myself. Not sure I did that about the first woman though!

    It just shows you how easy it is to judge, especially with invisible conditions, and when you are both ignorant and have had no serious illness experience yourself. However, that said, I'd like to think docs would know better; they at least shouldn't be suffering from ignorance. Plus I'd like to think they get taught about empathy. But maybe I'm being naïve!

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