I have suffered with tinnitus for years, but lately have had the pain behind my ears and I can't stand to lay on my right ear. I am new to this Lupus thing, and am relieved to know that there are others who are dealing with the same issues. For the last couple of years I've been thinking I was crazy because of all the strange, seemingly unrelated things I've dealt with.
Welcome to the club! LOL. A club that no one wants to belong to. 
My ears are driving me crazy today (and for the last few days.) I am wondering if the plaquenil I started last week is part of the problem. I hate that I have this crazy disease (MCTD) but I am glad to an answer to all the issues I have had over the years.
Ann, does the ringing ever get better? I just started plaquenil last week.
I had some weird mental symptoms when I first started taking plaquenil. I almost quit, too, but the really bad emotional stuff went away in a few days. Mine was mainly anxiety, and my doctor prescribed Xanax for that. It seemed to help. Of course, it took six months before I really noticed any difference, but it was worth it. I do feel like I have a bit more energy and less pain/swelling in joints. Maybe try again but get some fast acting antidepressive to take with it. Elavil works pretty fast and helps with sleep, and neuro pain as well. good luck with this!
OK ... well I start Plaquenil in three weeks because my body cannot take MTX, etc. Keep getting infections. If I am currently (have been for many years due to severe panic attacks) taking clonazepam/Zoloft, am hoping that will help with the depression and the ringing in the ears? I think I am going deaf anyway .. hopefully, I won't hear it. Trying to stay positive.
MBPP - my ears always feel full and I am constantly holding my nose and blowing; the doctor even checked and nothing was there, If it is on one side of your face only (very painful) could be triagiminal (sp) neuralgia, which I have as well. Also includes my jaw on that side (feels like it is broken).
Well, Ann, I guess that is encouraging and discouraging. Encouraging that the ear thing and the headache will only last (hopefully) a short time. I have only had slight nausea which hasn’t affected my appetite. Not much seems to affect my appetite, though. LOL. I have been in bed a lot lately because of feeling so weak and tired and because of being in so much pain. That tends to get me down but I don’t have and depression. Knock on wood. I go today for my Functional Capacity Evaluation. Just one of the hoops I have to go through before pain management will treat me. Thanks and have a great day.
Unfortunately the ringing was one of the minor side effects that I experienced the last time that I tried Plaquenil. I only lasted a month. I had the ringing in my ears and a headache. I lost my appetite and was so nauseated that I was constantly weak and light headed. The clinger for me was a depression so deep - I mean the pits of dispair and boughs of despond - that I was curled on the floor in a fetal ball crying about things that happened 50 years ago. I had to stop taking it.
I am tempted to try again. I need some energy big time.
Hey Heymj, I think am going to stick with it for a while. It has only been a few days so I am hoping that the yucky side effects will go away and I will get some benefit from it. I surely am tired of being sick. I am an antidepressant, have been for years, and I take halcion for sleep. If I didn’t take something for sleep, I would NEVER sleep. Have a great day.
heymj said:
I had some weird mental symptoms when I first started taking plaquenil. I almost quit, too, but the really bad emotional stuff went away in a few days. Mine was mainly anxiety, and my doctor prescribed Xanax for that. It seemed to help. Of course, it took six months before I really noticed any difference, but it was worth it. I do feel like I have a bit more energy and less pain/swelling in joints. Maybe try again but get some fast acting antidepressive to take with it. Elavil works pretty fast and helps with sleep, and neuro pain as well. good luck with this!
Hi Tootles,
I am not a doctor but I know that clonazepam can CAUSE depression. Any of the benzodiazepines can. Hopefully your doc has gone over all the side effects with you. I was on 4 mg of clonazepam for many years (was prescribed to me for sleep) and was not told that it was highly addictive, that it could cause depression (and i was being treated for depression) and that I was taking a very high dose. Coming off it was horrendous. But my depression was better. My ears are driving me crazy. I have been diagnosed with trigeminal neuralgia at some point. It is so weird. The right side of my head is numb, my ear hurts really bad, my teeth hurt on that side, my eye bothers me- all on the right side. In the past, I have gone to the doctor to get my ears, eyes, sinus and teeth checked. Nothing is ever there so I stopped going. I hope you feel better and get some relief. Have a great day. MB
Tootles said:
OK … well I start Plaquenil in three weeks because my body cannot take MTX, etc. Keep getting infections. If I am currently (have been for many years due to severe panic attacks) taking clonazepam/Zoloft, am hoping that will help with the depression and the ringing in the ears? I think I am going deaf anyway … hopefully, I won’t hear it. Trying to stay positive.
MBPP ... I have been on Clonazepam for years and years, as well. Thankfully, I do not drive anymore so have been able to get by on 1 or 2 mg per day ... mainly 1. Definitely need something for panic attacks, though. How did you finally get off of it .... did you replace it with something else? I heard it is very difficult to stop, but in my case, I cannot have the panic attacks start again either. I also started gaining weight when I started taking it ... The doc wants me to start weening myself off (just switched from Cymbalta back to Zoloft, too). Really nervous about the C.
MBPP - I do not sleep either ... that is where extra Clonazepam comes in ... Not sure I should give Lyrica another shot .. I know I could replace C with Lyrica after trying it once (I think) - that stuff is strong (at least for me) and I kept symptoms for almost 24 hours. Was not sure what to expect since he only gave it to me for sleep lol. Your thoughts?
MBPP said:
Hey Heymj, I think am going to stick with it for a while. It has only been a few days so I am hoping that the yucky side effects will go away and I will get some benefit from it. I surely am tired of being sick. I am an antidepressant, have been for years, and I take halcion for sleep. If I didn't take something for sleep, I would NEVER sleep. Have a great day.
heymj said:I had some weird mental symptoms when I first started taking plaquenil. I almost quit, too, but the really bad emotional stuff went away in a few days. Mine was mainly anxiety, and my doctor prescribed Xanax for that. It seemed to help. Of course, it took six months before I really noticed any difference, but it was worth it. I do feel like I have a bit more energy and less pain/swelling in joints. Maybe try again but get some fast acting antidepressive to take with it. Elavil works pretty fast and helps with sleep, and neuro pain as well. good luck with this!
Tootles,
Please be very careful when and if you try to get off the clonazepam. It is some wicked stuff. My doc (not the one who prescribed it) sent me to an outpatient place for two weeks. I went every day for 8 hours (except on the weekends) and got intensive group therapy while there. I don’t think the therapy was necessary nor do I think that it was a good fit for me as they treated mostly addiction and mine was a physical dependence and not an addiction. Anyway, the process was very slow- it took me about 8 months to get all the way off it. I did not replace it with anything else although they did up the Zoloft I was already on. You can expect a lot of anxiety, insomnia, body aches, tight muscles, etc. From what I have been told, a lot of people take 1 mg a day for many years and that is not a bad thing. But then, the doctor who prescribed the 4 mg a day told me there was no problem with that whereas my new doc had an absolute s*** fit when he heard I was on 4 mg. I would not try to wean myself off of any of the meds without a doctor supervising. I was just switched from Zoloft to Effexor and got sick as a dog- doc was going to put me in the hospital. Needless to say, I switched back. The docs will all tell you that there are no withdrawal symptoms from antidepressants but they are dead wrong, and the withdrawal symptoms can be quite severe, even fatal. If you do decide to wean off clonazepam, go slowly. I went from 4 to 3, then down by .5’s. when I got to 1, I went down by .25’s until I was off. A long and painful and scary process. I would definitively ask my doc why he thinks you need to be off it. Another thing I have read is that clonazepam and other benzos can be helpful with muscle cramps, spasms and tightness. And it is the med of choice for restless leg syndrome. Sorry for the ramble. Let me know if you have any other questions. Have a great day.
Tootles said:
MBPP - I do not sleep either ... that is where extra Clonazepam comes in ... Not sure I should give Lyrica another shot .. I know I could replace C with Lyrica after trying it once (I think) - that stuff is strong (at least for me) and I kept symptoms for almost 24 hours. Was not sure what to expect since he only gave it to me for sleep lol. Your thoughts?
MBPP said:Hey Heymj, I think am going to stick with it for a while. It has only been a few days so I am hoping that the yucky side effects will go away and I will get some benefit from it. I surely am tired of being sick. I am an antidepressant, have been for years, and I take halcion for sleep. If I didn't take something for sleep, I would NEVER sleep. Have a great day.
heymj said:I had some weird mental symptoms when I first started taking plaquenil. I almost quit, too, but the really bad emotional stuff went away in a few days. Mine was mainly anxiety, and my doctor prescribed Xanax for that. It seemed to help. Of course, it took six months before I really noticed any difference, but it was worth it. I do feel like I have a bit more energy and less pain/swelling in joints. Maybe try again but get some fast acting antidepressive to take with it. Elavil works pretty fast and helps with sleep, and neuro pain as well. good luck with this!
When I mentioned I was having hearing problems to my Rheumy...he sent me to an ENT immediately because he said ear problems are usually more serious with lupus. It turned out I had a large tumor in my ear and needed immediate surgery. The surgery was NOT at all painful...( and let me tell you...my pre-surgery imagination hurt me...while my actual surgery did not!). I can now hear beautifully...and my lupus flares dropped way down in severity and number...so for me...it was a definite win...and I am grateful to both doctors for taking me at my words and acting immediately. They said the tumor had BEEN growing in there undetected for up to 20 years...mastoid tumor...and it had eaten away part of my ear canal. They had to rebuild the wall of my ear. Let me repeat for those of you who have ear issues and put off going to an ENT or telling your other lupus Dr.s about it. I NEVER had an earache. It was just in there destroying my ear unbeknownst to me...and until my hearing was affected...I had no clue. ALSO LET ME REPEAT...THE EAR SURGERY DID NOT HURT AT ALL... NOT ONE LITTLE TINY TWINGE. I WAS TOTALLY AMAZED!
i have had a phantom ear ache for YEARS! had a hearing test a couple of years ago at an ENT and they acted like I was looney. I think I may be looney too. I have noticed that my ear buds will not stay in my left ear because the bone/cartilage part that it pushes up against is a smaller area than the other ear. In fact, I have an ear ache and popping today. frustrating... pretty sure they would have found a tumor if I had one. So glad you are doing better!
KarenK said:
When I mentioned I was having hearing problems to my Rheumy...he sent me to an ENT immediately because he said ear problems are usually more serious with lupus. It turned out I had a large tumor in my ear and needed immediate surgery. The surgery was NOT at all painful...( and let me tell you...my pre-surgery imagination hurt me...while my actual surgery did not!). I can now hear beautifully...and my lupus flares dropped way down in severity and number...so for me...it was a definite win...and I am grateful to both doctors for taking me at my words and acting immediately. They said the tumor had BEEN growing in there undetected for up to 20 years...mastoid tumor...and it had eaten away part of my ear canal. They had to rebuild the wall of my ear. Let me repeat for those of you who have ear issues and put off going to an ENT or telling your other lupus Dr.s about it. I NEVER had an earache. It was just in there destroying my ear unbeknownst to me...and until my hearing was affected...I had no clue. ALSO LET ME REPEAT...THE EAR SURGERY DID NOT HURT AT ALL... NOT ONE LITTLE TINY TWINGE. I WAS TOTALLY AMAZED!
I have the fullness in my ear feeling, and the pain there too. I just figured it was from my lymphatic system being constantly enflamed. Tonsils always swollen, always have a fever…etc. but as for the jaw pain, the only time I get that is if I don’t wear my night guard. I grind my teeth, which causes massive pain in my jaw and other bones. But your pain may be nurses, not bone. It may be some kind of inflammation in that area. Or it could be connected to an inflammation of your
Lymphatic system. Fun, right?!
Yep,a ll so fun! I am considering going to the net again. The last time I went they just did balance/equilibrium tests because of my dizziness and being off balance. They determined that I have Central Disequilibrium. Duh! What causes it? They had no answers. But my right ear always feels full and swollen. Guess it is time for another trip to the weirdo ENT. LOL
I get phantom ear pain a lot I also get major wax build up and I am 33 and have the hearing of a 56 yr old!!!