I am sorry to come back and ask another question, I really am trying not to appear a nuisance but I am in the middle of my GP saying he can't do anything else and waiting for the Hospital appointment, stuck in a world that I don't understand from a cause that I have no idea what it is, with experiences I don't know if are normal or not - to be expected or not.
I have 24/7 high pitch screeching through both ears, which fights with PT every day if I sit slightly reclined, or when trying to sleep - both sides, and even somedays just when stood / walking the dog. It is loud and intrusive and sounds like a dirty rusty old generator on steroids. The discomfort I have daily is all on the left side - every now and then I get a right earache but the daily pain / headache / earache / neck pain is all left side. Now also in my left eye corner - thought I was getting a stye about 2 weeks ago but nothing happened, the pain is still there, and my left nostril feels like it is raw, like it has been scraped with a strange tingling sensation.
Last night the screeching took on a totally different tone, but was very loud and felt like it was around me rather than in my head. Today my neck pain is different - feels like it has shifted, my head and neck and ears all feel like they have trebled in size, my ears are pressurised (I do get autophony quite frequently) my scalp - again only on the left is tender to the touch as if I've banged it, as if it is bruised.
Am I OK? Is this just a normal variance with this damned condition? I've read about hyperacusis and spikes - but only what other people are saying, I don't really know if that is what I am experiencing. I'm happy (well I'm not really happy but I'm not a queue jumper or a person who believes they need to be seen above anybody else) to wait for the NHS appt - I saw a private guy a month ago just to check there was no harm in waiting, he asked GP to do a couple of things which he has, and contact him again if I needed early intervention, but I can't afford to go back privately - but just want to be sure it is safe to do so. I saw my GP last week (obviously hadn't experienced how I feel today) and he wasn't concerned.
Thank you
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hollyrain
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I can't say anything about your physical symptoms. I don't suffer from any of them and I am not qualified to comment at all.
With that out of the way, I can say that in more than 20 years of T, my own experience is that if your brain can perceive a sound, a combination of sounds, a degree of loudness and /or location of that / those sounds, and a change in that / those loudness / locations, then T can imagine and create all of those.
Some people have just one of the above, and it remains constant, perhaps for a lifetime. Others (me), occasionally or permanently, have part or all of the full audio circus, and there is no predicting how or when the sounds will change. If, of course, there is some identifiable physical cause due to illness, then that may affect these things, but if if not, then they just happen.
Thank you for your response, I don't fully understand it - but that is simply because I don't understand T yet - the more I read (including all the posts here) the more confusing it becomes, it is so very convoluted and almost so individually unique to each person.....there are no "same" set of symptoms or experiences.
My appointment has come through for 2nd October, which is a relief as I'd been told to expect next September. To calm I am going to go away and relax, just me and the dog, but also take some time to read and try to understand more, as I'm sure that worrying about my symptoms will make things worse.
Hello Mawpaws and thank you for your reply - the private guy I saw asked my GP to refer to Tinnitus therapy - and GP says he has done. I think once I get in the hospital system I may find that access becomes easier........its so difficult to get anybody to want to do something. I saw an NHS Audiologist initially for a hearing test - but he spent his time telling me how he hated working in the NHS 🙄 and huffed when he said "I'll have to refer you now.......". If I don't hear anything I will certainly ask.
Hi Holly, It may be an idea for you to join one of the online support groups which tinnitus UK run. Its a good way to talk to a group of people and hear other experiences. This can help feel that you are not alone and can pick up some tips from other people going through the same thing.
I had hyperacusis for around 18 months. Hyperacusis is when some or all sounds are excruciatingly loud. Like the volume has been turned up on the world and feels unbearable. This would then have a knock on affect to make my tinnitus spike and other symptoms such as facial ache, tiredness and neck pain. I'm not a medic but if you dont have sensitivity to sound then it is probably something other than hyperacusis.
The NHS is horrendous for queue times. I would personally see a private Audiologist if you can but I can also totally understand this is out of most peoples price range.
Firstly - the online support groups - other than this fabulous group, I've only come across some on FB, but I struggle with UK/US content variations.
I think it was hyperacusis that struck at the beginning of the week, but I don't know what to, or what triggered it. My T is a screech, like a whistle, that type of pitch - but just during the normal day it will vary in pitch - a bit like being whistled aboard a ship - and volume. The PT does so - when I lie flat it is a "smooth" heartbeat, during the day sitting, standing, moving it is there or not, and sounds like a gutteral engine type noise (I feel like I have a glass bowl over my head with it reverberating) or muffled like somebody walking in a loft above you, and I am constantly saying to my hubs "was that a car / plane / train / thunder....." when it appears suddenly. So I am assuming my reaction is worse to very low pitched noises because although the dog barking irritates me, it doesn't grate on me like my jaw is vibrating which those low noises do. The private Dr made the point I have some "high frequency" hearing loss from the information I supplied to him from when I had the audiology appointment.
Thank you for your reply - I will try to find other forms of support as you suggest, and to understand more about what it is I am experiencing.
Sending you a virtual hug. I understand your frustration. Yes experienced and still do all of what you list as symptoms. Hypercussis was the GP’s guess but the audiologist wasn’t convinced as testing didn’t fit their box. It has lessened (been two years) but have flares (spikes) usually triggered by certain noises. The pulsatile tinnitus remains a constant. Some thought I experienced inflammation reaction, others a virus (never had Covid that I know) so I was left hanging until they found I had an arrhythmia (atrial fibrillation). I was treated with Bisoprosolol (beta blocker) which did help with the hearing issues as a lucky side effect
Thank you for your reply - and your virtual hug!! 😊
I have now received an appointment for the NHS ENT consultant for the 2nd October, so that has helped me to feel a bit more optimistic - I'd previously been told I was looking at Sept 2024 and I have no doubt that was adding to my anxiety. I'm documenting all of my symptoms and variations as I want to be totally sure I don't miss anything when I go, and I also want to be able to ask him about how he will investigate and manage until we get a firm cause. I will not be fobbed off - I've read of some people who have had real problems, passed from pillar to post, and I've learned from them that we have to be our own advocate....nobody else is going to do it for us.
I'm glad you are getting somewhere with betablockers and hope you continue to feel things improving
2nd October is pretty good . if you cant wait go private . otherwise try to relax a bit. Anxiety often causes a circle of symptoms. Good idea about a list. we often remember when we get home that we forgot to say something important.
I'm not medically trained and you are not a nuisance.
If your GP is fixated upon idiopathic tinnitus, motivating him/her to check anything else out will I think be like trying to push a reluctant elephant around a corner.
That said, I think the fact that you're suffering from positional neck pain, headache and pain/tingling around your face needs thorough investigation. Pain might be related to the tinnitus, where anxiety is causing muscles to tense up and the brain to turn pain signals into noise, but it might not. Given your age, you could be developing an anomaly around the cervical (neck) area that's causing some compression somewhere, either to nerves or a key blood vessel or both. Remember, I'm not medically trained; this is based on experience alone. Only a scan can detect cervical anomalies.
My recommendation based entirely upon experience is that you really should have a comprehensive MRI scan of your head/neck to check for oddities developing that could be affecting those areas. Once the nasties are ruled out, you could later look at neck massage to relieve anxiety/tension or gentle stretching exercises or both. It's not wise to try either until you've had a scan, and I would certainly avoid any kind of chiropractic/osteopathic manipulation whatever happens. A physiotherapist is best placed to advise if your head/neck problems turn out to be muscular in origin.
If you manage to obtain a scan and it seems you do have idiopathic tinnitus, the only relief is from habituation which does happen, but you need to be kind to yourself; it takes a lot of time for a brain to learn that it's OK and to 'ignore' the noise. Habituation will happen, but it's unlikely to be a quick process. There's lots of advice on the tinnitus.org website about this process.
Meanwhile, I suggest you ask your GP for a referral to a neurosurgeon (not a neurologist). Emphasize the symptoms of neck pain you have, the headaches and the tingling sensations in your face, as well as the fact that some symptoms are positional (this is important), not the tinnitus. An appointment may take some time to come through unless it is regarded as urgent. Bear in mind that no GP is qualified to assess the status of cervical nerve roots or blood flow and consider possible impediments. That's a specialist job.
If you do decide to go self-funded private, a consultation and comprehensive MRI scan will probably set you back around £2000. If it reveals something that needs attention, you can be switched to an NHS list thereafter; you have that right.
Firstly - thank you!! I do feel like a nuisance, I feel I am asking silly things! But very nice of you to say so. Now you really made me spit my tea out with the image of pushing my GP......the reluctant 🐘......around the corner - what a perfect description, and you are quite right, that is how it feels!! Our practice has a herd of such beasts, and then using much of your 10 mins having to explain everything again before you get to the reason for the visit.
3yrs ago, I had a pinched nerve to my neck, caused me untold problems, but i had an MRI of my c/spine which showed some "aging" in my neck. I very regularly get a "click" on moving my neck. I've never had any further investigations. I have permanent numbness to my fingers - "just have to live with it.........". I think that the pain in the neck was originally a residual of that, but I don't know. When covid hit and it became so difficult to get to see a GP I guess I just gave up.
Re the Neurosurgeon......I've read people saying they'd been to ENT, others that they had been to Neurologist / Neurosurgeon, and I've wondered how they've made a decision about whom to see. My appointment for ENT has come through for 2nd October - I'm going armed with symptoms and questions - should I ask him if I should have been referred to a Neuro Dr? The 🐘s haven't taken much interest in anything I've said - I think if they know you have a history of anxiety, they only see that - so its hardly surprising. I don't really understand it, but will try to read around it........thank you for your help and pointers, it really is much appreciated.
I strongly recommend that you don't let anyone side-track you into settling on anxiety as a cause of your issues unless everything else has been investigated and ruled out and you're comfortable with that diagnosis. Really comfortable, not just resigned to it because you've been pushed up against a brick wall. Anxiety can (unfortunately) be a go-to diagnosis for too many medics, I think because it's a catch-all for assorted symptoms that they don't want to investigate on cost grounds and/or it's cheap to medicate. Sometimes, a GP's immovable insistence upon a psychological cause triggers actual anxiety, in which case they're fomenting their own confirmation bias. Remember, you have physical symptoms of peripheral numbness and neck pain that both need investigation. Stay focused on that fact and keep absolutely calm and determined when speaking with medics. Write your symptoms down if it helps you, and hand the list to them.
I think you should push (that elephant) for a referral to a neurosurgeon. Consider explaining the numbness/pain issues to the ENT specialist you're due to see and ask if they would kindly refer you on to see a neurosurgeon, or at the very least order a comprehensive head/neck/shoulder/arms MRI scan for multi-disciplinary assessment. Specialists can easily refer onwards, the request doesn't always have to come from a GP, though some can be awkward and bounce you back to a GP if they're in that frame of mind. I've experienced both.
If you do need to persuade a reluctant GP to provide a referral, think cattle-prod. Be prepared to pester hard. Be polite, but do keep at them. Explain that you need the reassurance of a thorough investigation of your symptoms by an appropriate specialism i.e. neurosurgery, in preference to on-going misery owing to an avoidable missed or mis diagnosis.
PS. Do bear in mind that even if something is found amiss with your nerves or blood flow and dealt with appropriately, the tinnitus might remain. Sorry about adding that dampener!
A lot to absorb there.....and I will read over again....but as the joint Consultant and Junior Doctor strikes are now set to be on the date I had my ENT appt, that's not going to happen.
I want to get all the scans done....MRI IAM certainly, and as you said head, neck. I think I may book these privately then go armed to see somebody......how does one find a good Neurosurgeon to see privately??
I think waiting for NHS now will be detrimental (because of anxiety, partic relating to neck pain).
You can choose any neurosurgeon you please if you go privately. You can also get a referral letter from a private GP (cost around £130), or ask your NHS GP for a referral (for which they should not charge you) to a specialist in their private clinic. Nuffield and Spire hospitals have private GPs listed.
Two neurosurgeons I can recommend are both in London.
One is Ms Eleni Maratos, working out of the Cromwell Clinic in London. Note though that Ms Maratos will not be taking any new clients before the end of September.
The other is Prof. Marios Papadopoulos working out of the New Victoria Hospital, Kingston Upon Thames.
I suggest you do some research on both online and see what you think. Use their approach/expertise/areas of interest as baselines to find someone with similar skills if their London location does not work for you.
Expect to pay around £400 for 2 x consultations; 1 initial and 1 follow-up.
MRI/CT scans could cost between £1000-£1700 depending upon what is ordered. For your issues, I think MRI is likely. Radiographers may also want to do blood tests at around £200 if a contrasted scan is ordered (that's better still in terms of investigation).
The above scan costs are estimates for self-pay clients (uninsured).
It may seem a lot of money, but putting a price on peace of mind and a definitive assessment and diagnosis (even if it does turn out to be "idiopathic") is difficult to do. Symptoms affect each of us differently.
Personally, I think that as long as money to pay for some private care is squirreled away in an account somewhere and does not involve borrowing, it's worth the expense in the long term.
Whichever option you choose, private or NHS, I hope you are able to move forward soon!
I've thought on this all day and chatted to OH, I'm going to look at getting MRIs - IAM, brain, c-spine and carotid MRA. This will be a starter for me to at least know if something is going on, and to then take the scans (private will put on USB and print report) with me to a private Neurosurgeon (that is proving more difficult within my locality) so that I can't be told "we need to do investigations first", they can at least see the report / scan and listen to my history and symptoms and then give me their professional clinical opinion, and hopefully then they can pass me back to NHS care as you have suggested.
Do I need to get a GP referral to a private specialist? I didn't with the ENT chap - just booked it myself as was self funding. My GP(s) make me feel so "Stupid" that I end up in tears and unable to rationally discuss with them. Seeing the private guy was fine - never met me before, no pre judgement of me.
I've been given Nefopam by GP yesterday for the pain in head / neck, I've never heard of them before. I want to try to do without as I think if I feel I am getting somewhere (as I did when my appt came through) I may feel in a better state of mind to manage the pain.
I think it likely that you will need a referral or at least a specialist's recommendation to see a neurosurgeon privately, but do check what's needed with your chosen surgeon's secretary. You can see a GP privately to request a referral to a neurosurgeon of your choice, but your NHS GP may provide a letter for you at no charge. Both Spire and Nuffield hospitals offer private GP appointments. A private referral letter is charged on top of the private GP consultation fee. A letter I think costs around £30 extra.
Scans: My experience is that a patient cannot order their own scan. Scans are ordered by a supervising specialist. The specialist knows exactly what type, coverage and depth of scan is needed, which can be complex. I think you'd need to see a specialist first who will discuss your symptoms and needs with you, order the scan(s) and later discuss the results with you during a follow-up consultation.
Certainly scans that you pay for belong to you. They can be shared as widely as needed between medical personnel. I've had scans transferred from one medical establishment to another, as requested by specialists. They were sent online directly from the imaging department within which they were taken. I've found that different private/NHS hospitals can share scans. My scans have been transferred quickly and securely. The one exception was a scan that I wanted a specialist abroad to assess. I requested it and it was downloaded by the NHS imaging department onto a CD that I posted overseas by guaranteed delivery. It took a couple of weeks to sort out, because it was me (the patient) asking for a copy of the scan rather than a specialist, in which case it would have been actioned online immediately - even overseas.
My experience is that having a scan is a process that has strict protocols, i.e. who may order them and who can have them. The main thing is that once scans are taken, they are available for any specialist to examine and play a key role in reducing guesswork and misdiagnosis.
Good luck with obtaining your consultations, scans and a satisfactory outcome.
Thank you, it makes sense now re referral. I may ring Spire to enquire as I referred self to ENT there.I'll be using an open scanner...I had a serious event in normal scanner and used a private open one last time I needed one, and yes they do accept self Referrals.
However, I will look at a getting letter from GP in this instance to ensure they are aware of symptoms and key clinical issues. As my GPs eyes cloud over, perhaps that would be something a private GP could help me with.
I'm going away to my bolthole for a few weeks now with my dog, lots of fresh air, peace and quiet, walking time in which to think things through and make some phone calls.
with the symptoms you’ve described it sounds similar to some of mine. A lot of mine are because of nerve damage in my head which I assume was caused by long term antidepressant use. Does your T change tone if you manipulate your neck/jaw or if you press in certain places on your head?
thank you for your message - no it just changes tone whenever it feels like - even now, just typing! My head often feels warm but not noticed if it coincides with the change in tone or volume
How are you doing? Are you getting appropriate care?
I’m not too bad thanks. I’ve habituated pretty well. The early days very rough though. I still have good and bad days. I just try and keep myself busy. My biggest issue is I really struggle with my sleep. All the best.
Yes for me definitely. I’ve got a problem with my nervous system though. It’s related to my tinnitus but my brain doesn’t want to switch off. Neurologist said it’s sensitisation of the nerves.
Hello Holly you are in no way a nuisance as the lovely posters here have already said! I think this link might be useful to you for some reassurance and info whilst you wait for your appointment tinnitus.org.uk/support-for... My very best wishes
Thank you TinnitusUKPaula72 for your kind words and for the link.
I'm going to head to the hills for a couple of weeks peace and quiet with the dog this weekend, so will look at the link then when I can watch it and listen uninterrupted.
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