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LUPUS UK
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Tinnitus

I am getting tinnitus mainly at night and the consultant is talking about swapping me from Hydroxychloroquine to Mepachrine.

I am nervous about this as swapping SLE meds is usually horrendous and I wondered whether anyone else suffers from tinnitus and what they have tried?

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I get tenuous about 3/4 times a week luckily for no more than 10 seconds but for that 10 seconds it stops me in my tracks if I get it for a longer time generally at night it is just a pain as for stoping it I wear ear plugs all the time at work and this has helped as I work in a noisy environment abut as for medication I don't know if you find anything please let me know

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I will Ian - immune is mild and it's awful. Must be hard for you. Will let you know what I find out.

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Will do

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I got hearing loss & tinnitus though they think it's the illness for the hearing loss. I was on a high dose of Hydroxy then stopped it completely now back on a reduced dose. My replacement will be Azathioprine, not sure I want to touch them as it says they increase your risk of 6 cancers! I'd not heard of your one, I think I will enquire about it. I use a white noise app on my phone at night, that helps ☺

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This is very helpful. I also have high frequency hearing loss. Hope they get you a medication that works. It’s very difficult with side effects.

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Hi LH44,

When first diagonsed in 2012 I was put on Azathioprine. Just sorry it did not work for me as I am now on MTX. I had zero side effects with Aza - it was like popping smarties!! While MTX has brought a list of side effects.

I also have a cousin who has been on Aza for about 10 years she is doing really well on it.

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Thanks, that's good to know, more reassuring ☺

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I have been taking hydroxy since May (they gave me it before making the official diagnosis) i started to notice some differences by around end of June/beginning of July, one of those differences being my ears were ringing non stop! I saw a rheumatologist again in August who told me to stop take the hydroxy until I had my eyes tested as I was experiencing blurred vision and that if I find out my retinas are ok and that my eyes aren’t damaged because of the medication to reduce the dose from 400 to 200 and this should help the ringing. It’s no October and my GP has told me to stop taking them because the ringing is still there, my ears have been ringing non stop every single day since the first day it started and it’s driving me insane, I see my rheumatologist again in November and am hoping there is a different drug she can give me

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I'd been taking Hydroxychloroquine for a couple of years with no ear problems. I increased to 400mg a day & my ears have been a problem since & I stopped it for a few mths. I see tinnitus is one of the more common side effects, I was more concerned about the hearing loss although it says that's rare. I've been getting constant sinus problems & fluid on my ear drums since which in turn causes dizziness, its not good. I know a lot of people with these conditions have hearing loss but guess we'll never know if it's really the illness or medication? Something was picked up on ear MRI for my temporal lobe (brain) which affects hearing so again, I wonder is that the meds or illness....not knowing the answer you are gambling your health either way! My problem is Hydroxy controls my eye inflammation!

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It’s realky interesting you say about becoming dizzy, I’ve been having really bad dizzy spells that sometimes cause me to hit my head and knock me out, I didn’t even think about the connection with the tinnitus. My doctor thought at first that I had labryinthitis but as the medication for that made no difference they say it’s not that and I have to go to the ear nose and throat clinic on 22nd November, it’s completely disrupting my family because they’re worried about leaving me alone and I can’t be left alone with my children because I fall too often and I could end up being really hurt.

I just don’t feel like the hydroxy has had any good effect on me, things just seem to have gotten worse since I’ve been on it

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Sinus problems, dizzy spells, falling over, blurred vision and Tinnitus are all symptoms of aspartame intake. Check the products/drinks/meds’ you are taking as it may be this that’s causing a lot of the symptoms of folks on this post. You may not see an immediate stop to the Tinnitus as that may take a few weeks but the other symptoms you should have very quick relief from after stopping this poisonous sweetener.

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Ive checked the Hydroxchloroquine leaflet & can't see any aspartame?

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Do you have any other intake from food - diet products, yoghurts, jelly, vit c tablets, Gaviscon, chewing gum and many juices including fizzy and diluting juice? This stuff is far reaching and very much underestimated. It homes in on whatever weak spot you are having problems with in your body and therefore can present in many different forms. I was having similar symptoms to you until I stopped it!

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DollyDimpld25 can I ask if you have lupus? All of your replies to posts are about aspartame poisoning. Just curious. You never seem to say whether or not you have lupus yourself. Wendy

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Wendy39 - I displayed many of Lupus symptoms and at the beginning this was not ruled out. There were many tests with nothing coming to the fore, including being tested for dementia, I was constantly googling my symptoms as it got to the stage of me feeling desperately alone with no one believing how bad I felt. I came across Aspartame poisoning and after tallying up what I took in a day in tea and coffee sweeteners alone I just knew that probably was to blame! And I was correct! Having not touched anything with this in I feel a million times better. I joined this group before I found out what it was and often wonder if this might be the cause or at least worsening some people’s symptoms and feel the need to spread the word on this horrible stuff! If it helps at least one person lesson their pain it’s worth it.

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No, all removed a long time ago, only drink water!! I actually get visibly bubbled eardrums.

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No that isn’t something I’ve heard of before but I shall take a look into it now!

I’ve been having a horrible time lately, not only do I have bad tinnitus, I’ve been excessively sweating even though I feel cold most of the time, I’m exhausted and I keep getting so dizzy that I fall over and sometimes when I fall I hit my head and knock myself out, I’ve been knocked out 5 times in the last two weeks.

I’ve stopped the hydroxy as of today though because none of these things were happening to me before I started taking it

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My doctor is aware of my dizzy spells, I first knocked myself out while I was a patient in hospital but it was the day I was being discharged and they didn’t make me stay they just told me that they were referring me to ear nose and throat clinic, my appointment came through and it’s not into November 22nd!!

I have lupus which is why I’m on the hydroxy but everything has been bad since I started it!

Funny you mention about sugar fluctuations, I was laying in bed last night freezing cold but I was sweating, shivering and just felt like there was something I needed! It felt like I was having withdrawals but I had taken all of my meds’ that can cause that and it still wasn’t getting better and then all of a sudden I remembered the vet telling us symptoms of hypoglycaemia (my dog is diabetic) so I looked it up and all matches what has been happening to me so I will mention it at my next rheumatology appointment!

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Has your tinnitus/dizziness improved since stopping Hydroxy?

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Sadly no it hasn’t, I’ve managed to break my ribs now from falling over dizzy! Am going to ear nose and throat on Thursday to check if it’s an inner ear issue, I really hope it is because stopping the hydroxy has caused me to have a bad lupus flare

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Oh dear, hope your ok! I've been told my hearing loss is in the inner ears. Don't know what the exact problem is with my temporal lobe but that affects hearing too & I'm thinking surely the Hydroxy wouldn't have done that. It's not clear either when you can go dizzy with eardrum bubbles for 6 wks then be fine again. It's difficult isn't it because you don't want to take them if they're damaging your ears but if they're not you don't want to bring on flares/end up worse overall (or take a more risky alternative )? This is quite possibly one of the most confusing situations Ive come across so far. Not good whatsoever & the worst part is, no one knows for sure.

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One point, they take can up to 12wks to work but I read they can take 6 months to leave the body.

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Was you taking any rheumatology meds prior to the tinnitus? I know thyroid can cause tinnitus too. How did they diagnose the ETD, was it with that hand held device or something more in depth? One of my ears feels like ETD but they said it wasn't that using the hand held device although there's an issue with my temporal lobe which can affect hearing which I didn't realise was the brain...I assumed it was the ear!

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I think they're programmed to give the plane speech but I haven't flown for 4.5yrs! I just had another 6 wks of dizziness so I had a feeling my eardrum was bubbled & what a surprise, I was right! Like you never any ear infection. Valsalva manoeuvre never works for me. The only time I can unpop my bad ear is first thing when laying down still but not every day. No teeth grinding either but many allergies! My IAMs were ok on MRI but it said I needed CT of Temporal lobe & no one's done it yet. I'm not sure what the normal thing to do is with radiologist advice, I'm hoping it's followed! Yes you too, not nice is it, especially the dizziness!!

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I sleep on my LEFT side to help prevent acid reflux and this morning when I turned my head I heard my eardrum thump which tells me there is fluid pooling there. I have recently found a YouTube video on how to help drain the inner ears with your hands. Using a downward motion, gentle pressure behind the ear, just beyond the bone and down behind the ear lobe continuing down to the jaw bone. Also try Using a warm wet clean washcloth, cover your mouth and nose. While cupping the cloth over your nose and mouth... breathe moist air into your mouth. Close your mouth and breathe out your nose. Do this until you can blow your nose. It helps moisten the sinuses. I paid an ENT doctor $200 dollars for that medical advice! It does work for me. It may help with your allergy discomfort.

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Fortunately I don't suffer with reflux but the strangest thing for me this year is my nose is never blocked, always clear, just an intermittent bubbled eardrum. I do a heat mask over my eyes each night anyway, story of my life!! Sterimar nasal spray is a natural seawater that can help with keeping sinuses clean.

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I'm fairly good, I only drink water! It was always a choice but now it's more must do! After 6 wks mine cleared by itself, I just dread the return! Sleep on the opposite side, both ears are bad but the same one always worse. Any idea if the flu jab helps prevent it?

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Re; flu jab, I heard it can help reduce sinusitis which maybe could in turn help the ears? I must say I don't like the idea of putting something else in my body! Eye mask is heated for 30secs in microwave then kept on the eyes for 10+ mins. It's to help melt oil in the meibomian glands to help dryness.

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Hello. I've been getting tinnitus recently. It's not constant, just brief moments of it every day. That's new for me. I've been on hydroxy since November 2013 and then MMF since last July 2016 and started mepacrine in June this year. So not sure if it's a symptom of the lupus type stuff or side effect of meds. Happy to answer questions on mepacrine. It's been great for me!!! My combo of 3 meds is giving me the best period of health I've had for quite a while. Best wishes. Wendy

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I get it all the time Twinkle but would be reluctant to come off hydroxy as it suits me so well...must remember to ask at rheumatology next year. I've been taking it since 2005 and had it reduced a couple of years ago

I'm a bit deaf, told it was osteoarthritis in the little bones in my ears and it affects low and soft tones, high pitch I can hear quite well. My son has a very deep voice and I accused him of mumbling for ages before I had a hearing test and found it it was me....Hearing aids help

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