My tinnitus has gotten so bad over the last month or so that it's starting to interfere with things like watching tv. My ENT say there is nothing that can be done and I have to learn to live with it.
Has anyone tried anything that helps?
My ENT also said she doesn't believe it's Sjogren's related, but I'm sure it is because I never had it before I developed Sjogren's. Will it keep getting worse until I lose my hearing? Does it sometimes get better?
http/ /ohtwist.com/what-is-mcad/when-to-suspect-mcad/
I get tinnitus from foods I eat .. those containing salicylates really do it to me. I have to limit which foods I eat.... so just pay attention to see if certain foods contribute to your problem.
Are you on plaquenil? It can cause hearing issues, including tinnitus.
That being said, I have had tinnitus since before AI diagnoses and attribute mine to too many loud concerts and events. Last winter it really started interfering with my social interactions and I noticed I turned the tv up much louder than my husband. After talking to someone with tinnitus from Meniere's disease who said Costco hearing aids were helpful, I got a pair and have found they make a big difference and are easy to use.
Just like you I mentioned my tinnitus and noise sensitively to my rheumy and he said there was no connection with my SLE/Sjo. Looking online I see many who disagree and I myself am convinced they are related.
There was a thread about it here a few months ago here https://sjogrensworld.org/index.php?topic=30102.0 (https://sjogrensworld.org/index.php?topic=30102.0).
I tried many things myself but the only thing that helped was to start low dose prednisone, 5mg/day. I still have it but its a bit more manageable. It gets louder if I spend too much time in noisy environments so I have to watch that.
btw...I went out and bought some of those expensive Bose noise cancelling earplugs and they made it worse believe it or not! I mean they're great when at dealing with constant noise like in airplanes but when it gets quiet they amplify the tinnitus to intolerable levels.
Hope this helps.
So many things can cause tinnitus, but be aware that some medications may cause it as well.
I have lost the hearing in my right ear and had tinnitus before the deafness hardly started. I am of the opinion that the hearing loss and tinnitus are related to the Sjogrens. I lost my hearing in 1997 and it got very bad over the next couple of years. I was seen by the ENT I have now--20 years with him already and we haven't killed each other yet---his ENT father and he assessed me and did some testing that I don't even remember. I was then scheduled for a Right labyrinthectomy and nerve section. This is a pretty dramatic surgery where doc goes in and removes all the hearing apparatus in the ear plus the mastoid bone on the right side. He then went up and with a diamond tipped drill he destroyed the hearing nerve at the base of my brain to the right ear. He studied in Europe and is also a base ofd the brain specialist who does surgeries on some ENT issues and also works with neurologists on heavy duty brain surgery.
The reason for the surgery was to destroy all the parts of hearing that could pick up any sounds that I couldn't even hear plus the nerves that would precipitate the tinnitus. It did not remove the tinnitus and it is with me all the time. However, it did knock it down a notch so that it doesn't drive me as crazy. I had the surgery 18 years ago. It is a rugged sugary and it also destroys 50% of ones balance. I had to go to rehab to learn exercises that would help with my balance. Basically didn't walk so hot for a while and couldn't drive for several months.
Since then I have learned that they have some type of hearing device that one can place in the ear that makes a white noise and this is supposed to over ride the tinnitus. I guess Kenny Rogers, the singer, had these in both ears because his tinnitus was so bad. The Sjogrens affected the central nervous system and this can cause the deafness and the tinnitus. I don't know if you are losing your hearing but that can occur with the Sjogrens. I just had IV soul medrol, 1000 mgm once a month for 5 months, in the hopes that it would halt the hearing loss that has started in my left ear.
I don't know if the soul medrol will help the tinnitus, it didn't touch mine. Right now I am going through a louder period with my tinnitus. It tends to be bad and then better and I swear some of it is related to the amount of rest that I get and also how I feel physically. I still have some balance issues but I have 3 different causes of the balance issues so it is hard to sort it out. I hope you can find a specialist who can help you with this. I would not recommend that people rush into the surgery like I had because not everyone does as well as I do with the balance issues. Good luck.Irish
Thank you all for your ideas & suggestions!
Ignatz - thanks for the warning about the ear plugs. I would hate to spend money on them only to find out they made things worse! I think I'll ask my Dr. about low dose prednisone. It would be nice to get some relief.😊
SunshineDaydream - I'm not on Plaquenil, but I am on tamoxifen for b/c and have wondered if that might be making it worse. I'll keep the Costco hearing aids in mind.
Irish - you certainly have been through a lot. Hope things improve for you. I'll look into the device you mentioned. Thank you.
I had tinnitus that was very bad for a while. I took Lipoflavinoid Plus, a supplement that is supposed to help some cases. My tinnitus improved dramatically.
I got tinnitus along with dizziness etc..... My tinnitus got better when I cut back on my dose of plaquenil but it didn't go away completely. The dizziness got better when I started using steroid nasal spray. I think my allergies had something to do with the dizziness. Since I have food sensitivities, it wouldn't surprise me if some foods made it worse b/c it can come and go. I hope you can find some relief from everyone's suggestions.
I started the tinnitus about a year and a half ago along with very sensitive ears to loud noises. Mine is related to eating histamine foods and is almost not noticeable until I eat (histamine is in everything it seems). I have heard magnesium can really help - if you are deficient in that. Don't know anything about the dose but had a friend who improved dramatically on it. Wishing you well.
My mother in law has had terrible tennitis for several years. I noticed recently that her hearing wasn't as good as it used to be. I took her to a hearing aid specialist who fitted her with very small hearing aids that you cant even see. Not only did her hearing improve, but her tinnitis IMEDIATELY went away. It was like a miracle she said!
Thanks again for your responses & support.
My tinnitus does not fluctuate and is steadily getting worse. Food doesn't seem to affect it. I think I will eventually have to get hearing aids, but I'm not there yet emotionally...
I never bought a hearing aide. My hearing loss was so progressive over a period of a couple of years that I figured that it didn't pay to waste the money. I still have not bought one for the left ear as I do not know how fast this loss could progress. The loss has sstabilized for now and my loss is more so at certain sound levels. I also have problems when people mumble. I plan to buy a product that I can wear on my clothes or put in a pocket and turn on and off as I desire. The problem with hearing aides is they also make the screechy sounds louder.
As a nurse I I know that so many people buy hearing aides and they will sit in the box as people don't like how they work. My mother had 2 hearing aides that sat in a box and my brother in law also doesn't wear his much. Some of the new hearing aides are so small and can go into the ear, but my ears are so dry and sore inside that I would not be able to stand this. My observations.
I have also learned since being deaf that many people mumble and don't hardly open their mouth to pronounce words. I have also come to the conclusion that a lot of what is being said isn't always necessary. My immunologist doesn't want me to lose my good ear and neither do I but if the solu Medrol treatment is all their is I don't know how much of this my body can take. I told my doc that at my age I am happy that it is my hearing that I am losing and not my sight. Irish
Quote from: Sharon on April 22, 2017, 03:23:44 PM
So many things can cause tinnitus, but be aware that some medications may cause it as well.
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Very much so.
Hi :)
Plaquenil can cause tinnitus - it says so in the leaflet that comes with the medication.
I had to choose between taking it - or having tinnitus. I stopped the plaquenil.
I have more aches and pains but no tinnitus now - and it used to be bad.
Take care - Scottie :)
Many antibiotics can also cause it.
Quote from: irish on April 24, 2017, 11:43:45 AM
I never bought a hearing aide. My hearing loss was so progressive over a period of a couple of years that I figured that it didn't pay to waste the money. I still have not bought one for the left ear as I do not know how fast this loss could progress. The loss has sstabilized for now and my loss is more so at certain sound levels. I also have problems when people mumble. I plan to buy a product that I can wear on my clothes or put in a pocket and turn on and off as I desire. The problem with hearing aides is they also make the screechy sounds louder.
As a nurse I I know that so many people buy hearing aides and they will sit in the box as people don't like how they work. My mother had 2 hearing aides that sat in a box and my brother in law also doesn't wear his much. Some of the new hearing aides are so small and can go into the ear, but my ears are so dry and sore inside that I would not be able to stand this. My observations.
I have also learned since being deaf that many people mumble and don't hardly open their mouth to pronounce words. I have also come to the conclusion that a lot of what is being said isn't always necessary. My immunologist doesn't want me to lose my good ear and neither do I but if the solu Medrol treatment is all their is I don't know how much of this my body can take. I told my doc that at my age I am happy that it is my hearing that I am losing and not my sight. Irish
Just wanted to drop in and let readers know the Costco hearing aides can be adjusted so screechy sounds are not too loud. After getting them, the audiologist had me wear them for a few weeks and then come back to report if any noises in particular were bothering me as either too loud or not loud enough. I found that food wrappers, ice clinking and toilet flushing were really annoyingly loud. The audiologist was able to quickly adjust that so it is no longer a problem.
The audiologist noticed I wasn't wearing them as often as I should have been and when I told her it was because they made my ears itch, she gave me Comfort Ear moisturizer for free to try.
Also, the hearing aides can be programmed for different settings such as general, television, noise/party/restaurant, outdoor/traffic and other scenarios. The user can change settings and volume by pushing buttons on the hearing aide or using an app on a cell phone. This is all with the Costco premium set which is the lowest price they offer. The other brands do not have as many features and are more expensive. They can be returned for full refund within 180 days of purchase, have warranty and each can be replaced once for free if lost or broken.
* I do not work for Costco. I'm just super happy with my purchase. :) I'd be happier, though, if I didn't have tinnitus.
google "tinnitus finger drumming technique"
I saw this weird thing on Facebook and someone swore by it. Said it cured their tinnitus.
This was awhile ago.
If I find a link or something I'll post it.
Anyway, I explained it to my husband who has had moderate to bad tinnitus for over twenty years.
He did it and got the shock of his life...as he said it dramatically improved his tinnitus.
It involved sort of a weird thumping on his head with his fingers...I can't recall it was several months ago. It is now a very minor problem...ever since he did this weird thing.
If it is legal and free most anything is worth a try. Glad your hubby had some help. Irish
Thank you, Irish!
Here is a helpful link:
https://m.youtube.com/watch?v=ajb37ie-Juo
Thanks, Nomad. It's worth giving it a try 🙂!