Vasculitis and the ears and eyes

I am sorry that I seem to be back again...still no diagnosis but then I have largely given up seeing any doc over last year as I feel so dissillusioned, However, in addition to my chronic pain at the back of my nose somewhere, I now have frequent bouts of double or blurred vision. optician says eyes are fine so itsnot a sight thing, rather he feels some intermittent interruption to blood supply to eyes. this week I woke suddenly due to a loud roaring noise in one ear....very disconcerting. afetr three days I saw doc as it didnt abate, but does travel from one side to the other...referred to hospital ENT..however I cant even MAKE an appt as there are none, and when I do...which apparently will be possible by mid June...I can expect to wait four or five months.. Is this related to vasculitus, and if so, how will I manage five or six months of this noise...aarrgghh

25 Replies

  • Don't leave it. If it's affecting your quality of life and the symptoms are becoming unbearable, push for an emergency ENT appointment. It took me several attempts. My GP eventually sent me via A&E. Good Luck.

  • Hi Tinkytink I dont know if any of this will help but my eyes were watering and my vision was blurring so bad I was having trouble reading. Went to the optometrist today. After a thorough exam, he said there was fluid around my eyes probably from the steroids and methotrexate (I'm on low doses of both) that was causing the blurring. He gave me lotemax and pazeo. Ugh..more meds! Well, we'll see if it helps

    I've had constant tinnitus ever since I've been on the steroids and low dose aspirin. It's probably the aspirin but I can't take any other blood thinner for various reasons.i have also read that tinnitus can be a part of Vasculitis. I've had it for over a year I've been to ENT and neurologist but noone found anything wrong or has any suggestions. I hate this stupid disease! Noone knows what to do about it except to give you drugs that cause other problems on top of the ones you already have. Sorry !

    I hope you find some answers! ₩

  • Tinkytink I agree with others. That does sound very alarming. Eyes and ears seem to be commonly affected by certain Vasculitis. I don't know enough about different types of V. Perhaps, Susan, the lovely, kind lady of VUK, might be able to offer some advice?

    London37 "I hate this stupid disease! No one knows what to do about it except to give you drugs that cause other problems on top of the ones you already have. Sorry !"

    This is probably one of the most recurrent observation / sentiment shared by so many patients (including my case). If someone would start an E-petition, it might be worth pursuing. I'm sure this needs to be heard and worth campaigning (to raise awareness). The presence of VUK certainly helps greatly. I often wonder how many were diagnosed and treated quickly in an earlier stage of vasculitis. (I would be assuming that these would probably happen at some specialist centres for those who live nearby.) It seems that only when the patients would end up in a critical situation due to some organ compromise, you are shocked to hear about their diagnosis (e.g. V).

    I would only hate to think how many people had died from this without knowing. My first degree relatives were dead in their early 50s. One was fit, highly productive and healthy, too..but I digress.

    London37 I get this horrendous tinnitus as well. Another thing. Neurology is not very good at dealing with conditions associated with autoimmune diseases (I only say this because I have been through the system since years ago - again, I am aware that there are lucky few who were helped, promptly but this does not happen everywhere). There are excellent Neuro drs in the US but UK is falling well behind despite the amount of patients struggling as a result of autoimmune diseases (e.g. CNS involvement / Vasculitis) and I get to hear that the number of patients increasing weekly according to the reliable source...Knowing autoimmune diseases are one of the commonest chronic conditions, V must be "fairly common" but all too often under-diagnosed. (My astute GP thinks that V is still considered "rare". ) Sorry to hear about issues of the blood thinner. It's a difficult one. I reacted badly to one myself. Another issue would be, when your vessels become so narrowed (and tissues are already quite compromised), how safe would it be to be on "ordinary" blood thinner? I don't mean to scare anyone but my Father in law practically bled to death in his hospital bed (it was one of the major hospitals). His dr said it was Warfarin he was on. He had shown signs of vascular dementia / vision issues years before his death. He was the school headmaster, who was adored by his students. Take care and thank you for sharing.

  • Where do you suggest a petition Ferntree? I have been campaigning through various means and all are resistant to raising awareness.

  • WMTuk

    I have seen some very successful e-petitions in other forums.

    Hope that it helps. x

  • A government petition. I'm not sure how many signatories are required for a government petition to be assessed but I think it is in the region of tens of thousands. I don't think they look at every petition only those where a vast section of the electorate campaign for something that relates to government politics. I don't think Vasculitis UK or PMRGCAuk are interested despite having the ideal profile to host a campaign for greater awareness amongst professionals. I can think of no other way of reaching this small catchment so I was going to start my own campaign group. Because so many people with GCA are elderly, many are not online. I am also far from well myself. Perhaps writing to the Health Minister with your concerns, or do what I have been doing, write about your experience and send it to the medical magazines, such as GP, Pulse and Hospital Doctor and request they give it a higher profile. I have also gone through the websites about GCA and where they have given incorrect information, asked them to change it. Most underplay the seriousness of PMR and GCA (a lot of PMR literature says 'night sweats' instead of high fevers throughout the day, for instance or that GCA only affects the temple artery and blindness needs to be prevented, rather than list the very serious life long disabilities and danger of death that are highly possible with GCA). Must move every 20 minutes to keep circulation going! :-)

  • I have seen several thyroid petitions starting small and recently, it had achieved signatures of well over 10,000. I would be surprised if GCA wouldn't achieve similarly knowing the media running a few stories (and yes people read papers). One needs to be extremely positive in these things. Best not to expect something big to be achieved overnight but these things gain momentum gradually.

  • Hi Ferntree...Im curious ..Do you suffer from Vasculitis and did your relatives have vasculitis? I ask becuase My mum died of WG in 1974 but now my sister is at point of diagnosis either with WG or Churg Strauss, my son sees specialist in two weeks to see if he has it and I am also symptomatic for last three years. I heard about the research going on into familial links with autoimmune disease when I attended the Vasculitis Uk conference recently

  • I'm sorry to hear about vasculitis affecting several members in your family. Yes, I have been diagnosed with systemic vasculitis after years of suffering from the condition (yet to be classified as to which - I think it's the commonest form, GCA) I had strokes and struggled along with difficulties getting to the bottom of this whilst I developed myriad of problems. Autoimmune diseases are familial (with the genetic risk factors) though you may not get exactly the same disease. If you run "search" on this site, I'm sure you will get quite a few hits on the subject. My Neurologist knew I had an autoimmune condition but he was helpless unable to get the type of help I needed for a long time (he tried to help) . Thank you for sharing. I think that autoimmune disease is so common but it is seriously neglected.

  • Hi London 37. I know it's been 2 years since you posted this, not I'm wondering if you are still having problems. I to suffer vasculitis from chemotherapy and developed tinnitus. I also developed a Subclavian blood clot in my left. I have constant will watering when I have flares. Have you found a solution yet? And do you still take the aspirin? I won't take it because it's ototoxic and can cause tinnitus and make it worse. I use Gingko Biloba as a natural thinner and tumeric it's another you can add to your diet to help. How are you now? I hope you see this reply.

  • Don't wait for appointment go to A&E.

  • You could also try the eye a&he... I didn't know it was different from a&e until my optician ref to it . I was told if flashes, etc last than more than 15 min then to go to the emergency ...

  • I know private medicine is very expensive but a private appointment with a consultant can give you a quick-start option. After several years getting worse and worse and with no help from my GP I went privately to a consultant who suggested Vasculitis as a cause. I asked the GP to refer me to a vasculitis specialist (she knew nothing about vasculitis) and that gained me the access to NHS treatment at Addenbrookes which has been wonderful. If a similar route is a possibility for you, look up a vasculitis specialist near you who has both an NHS and a private practice. You may find this a much quicker way to get your referral.

  • You need to go to A and E as fast as you can...and tell them about your diagnosis. When I went to the Hammersmith Hospital for a second opinion I was told that any visual disturbances were an immediate emergency and not to hang about or worry that I was wasting anyone's time. I've got large vessel Vasculitis and the visual breakups were pretty scary.

  • Go to A&E, preferably in a big hospital with an ENT department, and tell them your symptoms - don't gloss over anything - and emphasise the visual and ear problems and position of the pain.

    There are ways of getting a patient seen by an ENT person quickly and your GP isn't doing it. The NHS may be in a mess but it does do emergency medicine very well when it is needed.

  • List all your symptoms in writing and give a copy to everyone you visit (optician, ENT, GP whoever). Blurred and double vision are symptoms of Giant Cell Arteritis, as is tinnitis (ringing in the ears). The nuisance of GCA is that inflammation does move about. Personally, when this happened to me, I took 300mg of asprin and I think it moved a potential blockage but your doctor needs to look at your blood test and history to know if you can take asprin safely. Ask for a copy of your blood test results. You need from your GP a blood test for ESR and CRP test as these are inflammatory markers. Even if these markers are not raised, you could still have GCA which has very serious dangers both immediate and long term. Have you also got PMR (stiff, weak, aching) muscles and joints in hips/shoulders? Certainly, professionals are poor at recognising GCA and as a patient who has had very seriously appalling treatment from doctors, I also think they are bordering on worthless, however, you must make yourself go to your GP and take someone with you as soon as possible asking for the required blood test and questioning Giant Cell Arteritis. Good luck!

  • PS One way of getting a more immediate hospital appointment is to ask your GP to put as many hospitals on their request as possible. The first hospital on the list with an appointment will contact you and you can then ask to have a more urgent appointment when someone cancels.

  • Thank you so much everyone....its is so reassuring that SOMEONE listens! I will read through these properly afetr the weekend and decide what to do...eyes not as bad today but still have the freight train noise! .

  • I don't know if this will help, I have had PMR/GCA for nearly 4 yrs & when on a high dose of steroids at first (60-50 mg) I suffered from dreadful noises, had 2 hearing tests which proved ears were ok, so it had to be the illness & medication. It did stop eventually! I do have tinnitus anyway, have had that for yrs but the other noise was very different. I hope you find some relief soon.

  • Thanks for this...I am not taking any meds at present so perhaps its not related?

  • Dear Tinkytink,

    First of all, in answer to you 'I'm here again comment'...Welcome back! Secondly how far are you from Cambridge? It's just that Dr David Jane, the leading authority on ALL 'things' Vasculitis/auto-immune-and also a consultant to Vasculitis UK (our sister organisation)-is based there. I don't have a number, for Dr Jane himself, but you could try calling the switchboard or try an Email, marked for his attention. Heck, and from what you have said you will need a 'miracle', you might even get a referral...Well it's worth a try! I mean the Earth does orbit the sun-at least that's what I was taught!

    I do feel 'sorry', for you, though, I am aware, that this always (I mean always) sounds patronising and I definitely don't mean that. I am very angry, on your behalf, how DARE 'they' treat you like this-you are a sick person (I don't know if you are a 'boy' or 'girl', not that it matters!).

    Some of the drugs, that we are all on, do list 'Tinnitus' as a possible 'side effect'. I to get odd noises-whistles, hums, and so forth-but not 'jet engines'. I, therefore do, honestly wonder if some more serious harm might be being/have been done; another reason to 'fight your corner'- if one where needed.

    Anyway I have 'rattled on' quite enough now. It only remains for me to send you my, indeed all of our, love, prayers and best wishes.


  • Hey Andrew, I really apreciate all the help and encouragemnet you guys give. My family are having a total mighmare as we feel at a loss to get anyone to listen...except you guys. Our surgery is staffed by locums only so every visit is the 'first' visit...I have be ome so resigned that I seem to a cept the most bizarre deterioration and symptoms without even seeing a doc as I feel like a hypochondriac. It took me. Days to even ask them about my double vision and ear noise. It has travelled actoss my head and is more my right side now but is as loud or louder than ever today and its almost a week...On Tuesday I plan to call doc again and ask for more urgent referral somehwere which I would never have had the confidence to do without your encouragemnet. Thanks again...x

  • Sorry concentration/ cognitive stuff not so great just now as I've been in hospital for four days now - second week here in a month! I too have complex AI stuff going on and at last a small team of doctors and a nephrologist plus my GP are all keeping me here under observation with a view to hitting my distant rheumy hard with some facts about my health tomorrow.

    I was asked today if I'd had my artery in side of my head biopsied by ENT yet? I said I've never been referred to ENT despite this vestibular problem plus pain in teeth and nose for overs year. I do feel that those of us who drift between the classic symptoms get marginalised - sometimes until it's too late.

    I don't know if this will help you but the way I was admitted this time was rather desperate and involved exaggeration of a less troubling symptom which I knew they would have to check out to rule out a stroke. Being the honest to the point of pathological has proved my downfall over my life inany respects.

    So on Thursday I took a whole cocktail of opiates at maximum prescription quantities - both as pain relief and because I know that I'm very prone to drug overreactions. I went to sleep and woke numb down my left side from eye to foot. I knew it would probably pass in the main but it continued for an hour so I told my husband to phone GP and he came straight up. He wouldn't have for pain or dizziness but numbness is different because of strokes. He tested me with little rods and I can't act for toffee so he told my hubby that he was putting me to hospital again (last time abdominal sepsis) although only half my synptoms seemed genuine!

    The result has been that four years of rollercoaster may have finally paid off. My CRP was back up at 140 and ESR 72 so I felt vindicated.

    Please use whatever synptoms you have to press the right buttons - I agree that the vision problem is probably the one to go for. You may be unlucky to be seen by someone dismissive but you may just got the right doctor at the right time as I have. I do very much hope so. We should f have to become strategists but I feel it is the only way to get attention for potentially very serious illness such as vasculitis.

    Re PMR/ GCA and thyroid. I was rather alarmed by a thread on Thyroid UK HU the other day saying that Polymyalgia is a symptom rather than a disease (making it sound very much like Fybromyalgia). When I disputed this assertion and pointed out that some synptoms of someone's uncle with PMR sounded very like GCA I was rounded on about steroids, my point was refuted and a few people agreed with each other that steroid were dangerous and should be avoided. I felt like the proverbial fox with some very ill informed and antagonistic hounds so left the post.

    If anyone can find it and confirm my point that PMR is

    actually a type of vasculitis

    that would be great. It really worried me. Twitchy

  • Optometrists do not have a blue slit lamp, so they cannot determine autoimmune issues in the eyes. I would suggest going to an opthamologist.

    Going to a Rheumatologist can also, help you determine if you have vasculitis.

    Don't wait because vasculitis can do extreme damage to organs, such as kidneys, lungs, sinuses, ears, etc and death.

    It must be treated right away.

  • Hi there

    I can't recommend the Vasculitis/Renal clinic headed by Professor Pusey at Hammersmith Hospital highly enough. My symptoms started as double vision and generalised regular pain in the nasal/eye/ear area. I initially went via A&E at Moorfields Eye Hospital with my double vision as it was near my place of work. Following various scans etc. they initially started me on high dose steroids as they could see swelling etc. then sent me for an ENT biopsy. This didn't shed any light on the matter so to try to cut a long story short, after continuing to be seen by the team at Moorfields (who are amazing) for about 6 months and being unable to reduce the steroid dosage, one of the lovely consultants eventually said he was going to refer me to Professor Pusey at Hammersmith. The doctor that I saw at Hammersmith gave me a diagnosis of Wegener's within 20 minutes of talking through the history of my symptoms and this was confirmed on biopsy of my left orbit at Moorfields. I am happy to say they have managed through various treatments to push the condition into remission on immuno-suppressants and I haven't needed steroids for several years now. I haven't read all your posts and not sure what area you are in but I hope it helps.

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