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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

to ask for help on behalf of my friend, she is having VERY weird health symptoms, poss M.E related

18 replies

mistyshouse · 16/10/2013 15:02

i am posting for traffic so sorry to post in here. but i am really worried about my friend as she is practically suicidal, she is with her mum at the moment at the local walk in clinic

just a bit of background: she has ME, plus depression and anxiety and other health problems, many i think linked to the ME. she has had the M.E it long term, she is only in her 30's but had it 15 years.

so a few weeks ago she started having a problem with her ears. they suddenly became hyper sensitive to noise, she couldn't tolerate TV, crowds, music, people talking, talking on the phone etc (even quietly).
then it became so bad that she couldnt tolerate her own voice even, she said when she spoke it vibrated around her head and ears and it was unbearable. and now, she says every time she moves her eyes, she can hear them moving. and when she moves her eyes, she can feel it vibrating up and down her faceshe said she could even hear her pupils dilating earlier Shock and she says it is so loud. she says she can't carry on like this, that she wants to end it all :(

there is no ear infection or anything visible. and not one doctor she has seen seems to believe her, she has seen loads of different doctors and not one has done anything to help her, she just gets fobbed off all the time :(

tbh i am struggling a little bit to believe her as well, just because it sounds so crazy. i mean, is it even POSSIBLE to hear your eyes etc moving, i mean, they dont make a sound do they?? so am wondering if the stress is making her imagine things. but i have not told her that as she is so distressed, and i am not medical so how the hell do i know if its real or not. but i want to be there for her and i dont want her to feel i dont believe her

sorry its long but i was wondering if anyone else has been through anything like this and what the hell is it?? or even better if there is anyone medical on here that might read this

OP posts:
RiffyWammal · 16/10/2013 15:25

That sounds awful. Your poor friend!

There is a condition called superior canal dehiscence where the sufferer can hear their own eyeballs moving. here is an article describing a woman's experience and the operation that can cure it.

Please show your friend these so she can speak to the doctor again. It must be awful to be fobbed off and not taken seriously with such a dreadful complaint. If she reads these she may feel better knowing it is a real condition and there is treatment out there.

You sound like a lovely friend OP Smile

SunshineMMum · 16/10/2013 15:59

This reply has been deleted

Message withdrawn at poster's request.

Original poster
mistyshouse · 16/10/2013 16:08

riffy that sounds a lot like it. have sent her both links. Thank you Flowers

sunshinemum no she does not have any autistic traits i dont think. but yeah i know sometimes people with autism can be hyper sensitive to noise etc. i agree that she is probably hyper aware of body functions, in fact she has admitted it hersef. so that doesn't help her either.

she has just text and she has been sent home from the walk in centre as "nothing is wrong" - no - nothing at all, she is just almost suicidal and being driven mad by the feelings she is experiencing, but no, its "nothing" Hmm :(

OP posts:
SunshineMMum · 16/10/2013 16:18

This reply has been deleted

Message withdrawn at poster's request.

SouredStones · 16/10/2013 16:50

Any chance she's had a head trauma? (Stroke, haemorrhage etc) I dealt with a lady at work who had those symptoms following a head trauma.

Totally unhelpful, but at least it passes the time while she's seeking medical help

Original poster
mistyshouse · 16/10/2013 17:17

no souredstones i don't think she has, but i could ask her. i think if she had she would prbs have connected the 2 though

and i dunno sunshinemum from what she has said i think ANY noise at all bothers her

i feel so bad for her. she really is the most lovely person, she doesnt deserve this (well no one would but ykwim )

OP posts:
bumbleymummy · 16/10/2013 17:24

Ok - a bit random but could she try taking a magnesium
Supplement? There is one called magnesium-ok that is for women in particular - has b-vitamins etc. I'm only suggesting it because magnesium deficiency can cause hearing sensitivity and it has also been linked to anxiety and depression. I started taking it for my anxiety and I feel much better - nothing else really seemed to be helping. You can get it in Boots. I don't think it would do any harm to try it if nothing else is working.

VerucaInTheNutRoom · 16/10/2013 17:54

This reminds me of an episode of Grey's Anatomy where a young girl was misdiagnosed with schizophrenia - she could hear all of her bodily functions and it was driving her mad. The problem turned out to be a tiny hole in her inner ear. She had an op to seal it and all was well.

newestbridearound · 16/10/2013 18:01

Hello, I'm so sorry your friend is going through this, doctors can be less than helpful when something stumps them. M.E can have literally dozens of symptoms so it is possible that if they cannot find any other cause then it is down to that- at it's most severe hypersensitivity can be horrific, it can be painful to even hear yourself breathing or have someone step into a room with you. Has she got a specialist or been referred to a consultant at all? It sounds as though she needs more specialist knowledge than she is getting from her gp. Try to encourage her to push for that and see different doctors until one of them will listen. I have found that eventually if I make enough fuss someone takes me seriously!

I also have M.E and depression/anxiety, I know exactly what it's like to both feel like you are going crazy and becoming suicidal- in fact I posted on here about it not long ago- so I really feel for your friend. I too have come out of walk in centres and surgeries crying and exasperated because no one will listen. I am not too much younger than her (mid twenties) so if she ever fancies someone to chat with about it all PM me and I'll give you my email address to pass onto her.

You sounds like a brilliant friend by the way, it's so hard to find supportive people with this illness so she is very lucky Smile

Lilacroses · 16/10/2013 18:04

That sounds absolutely awful, your poor friend. I don't know what to say to help but just sending sympathy and wishing her a speedy recovery. I had hideous symptoms for 18 months culminating in loss of my speech and loss of movement on one side. It turned out to be a virus. Maybe that is a possibility. Giving you a bump anyhow.

SunshineMMum · 16/10/2013 18:07

This reply has been deleted

Message withdrawn at poster's request.

SpookyRestingFace · 16/10/2013 18:13

Autophony

I came across it whilst researching Googling something that happens to my ear occasionally, which I think is patulous eustachian tube. Your friend's thing does sound more like the superior canal dehiscence mentioned by a previous post.

Original poster
mistyshouse · 17/10/2013 10:17

thanks all

newestbride - i really feel for you - ME is awful. but possibly the worst thing about it is how people "don't believe in it" even health professionals. so i know what you mean about no one will listen :( its so unfair, why is this illness treated so differently to other illnesses.
and you are right about not being able to find supportive friends etc. my friend has lost so many friends and boyfriends because they either don't believe her, or think she is "mad". even some of her family members are sceptical and make bitchy comments to her. its got worse since the benefit bashing culture has got really bad over last couple of years as she can't work and is on benefits (although she gets next to nothing and has to live with her parents as she can't look after herself :( ) .

she has been battling it for years and until i knew her i knew nothing about it. tbh i have known her 5 years now and still don't really understand it. but i do try because i love her and because she is such a good friend. she also can't take anti depressants / anti anxiety drugs because she always has a bad reaction to them

and lilacroses god that must have been awful Shock am so glad you are better now

sunshinemum perhaps it would be worth a try then, i will suggest to her

and spookyrestingface yes they definitely have similar symptoms to what she is having. she found that patulous eustachian thing a few weeks ago and wondered if it was something like that.

OP posts:
SleepyBum · 17/10/2013 10:56

Your poor friend Sad

I have heard of hearing sensitivity with m.e (kind of like a sensory overload) but your friend sounds like she is suffering in the extreme.

Unfortunately the support for people with m.e is woefully inadequate - you are either completely dismissed or everything is written off as yet another symptom that you have to live with.

I have m.e and because I look fine and I have an outgoing and chatty exterior nobody ever takes me seriously or seems to understand when I say I am struggling. You are a fabulous friend to care so much Thanks

Original poster
mistyshouse · 17/10/2013 11:01

aww sleepy thank you

and yes you sound very similar to my friend

she looks fab, in fact she is stunning, and she is funny, chatty and outgoing - so because she looks so great and is so outgoing etc, people see that side of her but what they don't see is when she goes home and can't get out of bed for a day with exhaustion, and the aches and pains because of the sheer physical toll that just going out for a coffee takes on her :(

and yes totally agree support for Me suffers is utterly woeful...am sorry you too are going through it Flowers

OP posts:
SleepyBum · 17/10/2013 11:11

Thank you so much misty

God, your friend could be me (especially the stunning part Grin). People are strange, I've actually found that some actually try to get into a tiredness competition, as if I have no right to be more tired than them. Weirdos.

I wish both of you the very best, you sound lovely.

ohmymimi · 17/10/2013 11:30

I have had ME for 13 years and it can cause a variety of weird symptoms. The danger is to assume that everything new that develops is caused by the ME. I stay away from self diagnosis via the internet, which can scare the bejesus out of you, and speak to my GP if anything unexplained worries me. Your friend's symptoms sound frightening and, whatever the cause, she needs medical help and support. You say she has seen various doctors, have these been GPs at her practice or Specialists?

Original poster
mistyshouse · 17/10/2013 16:52

thanks sleepybum :)

The danger is to assume that everything new that develops is caused by the ME and yes ohmymimi - this seems to happen a lot - the doctors just use it as a blanket diagnosis whenever she has something new wrong with her Hmm

so far she has seen GP's and the staff at the walk in centre, i assume they are GPs as well

she is also paying privately to see an ENT specialist, she is seeing him later today, i just hope he helps her as its heartbreaking seeing her in such a state

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