It's about 1:25 in the morning here and I woke up about 45 minutes ago with ringing in my right ear. I don't know how long it was going on but I know it was for a while because I was having a dream about ringing in my ear and I was on the message boards asking for help like I'm doing now so I think the ringing triggered the dream. This happened once before for about 15 minutes shortly after I started the RA meds and the RD said if it happens again to call him. I can't call him now and it's a weekend. I hope there will be someone on call because I'm not sure what to do. I think the Plaquenil is what's causing this, I can't remember from the last time, but I'm going to do a search while I wait for someone here to respond, hopefully with some information. I'm terrified of this ringing because I'm already totally deaf in my left ear from either a virus or an autoimmune inner ear disease (they're just not sure) and I have bad tinnitis in that ear that only quiets down when I'm in a totally quiet environment for a while and comes back and gets louder and louder, the louder my environment. If this doesn't stop, I'm in big trouble. It's so hard for me to hear now because of the noisy left ear. If my good ear is damaged I don't know how I'll deal with it. Has this happened to anyone out there? Did the tinnitus go away when you stopped the medicaton? I'm going to research this now but I hope there's someone out there who can give me some answers before I call the RD in the morning, if I can even get him.
Hi Milly. I just looked it up and it seems it's the Plaquenil. MTX is presecribed for tinnitus, so I guess that's not it. I think the only thing the emergency room would do is tell me not to take any more Plaq. and talk to my doctor. You can be sure I won't take any more of it until then. If I can't get hold of someone this morning I will call the emergency room and talk to a doctor there. That's a good idea. I didn't even consider that as an alternative. I just pray this will stop if I don't take anymore Plaq. I can't afford any more hearing loss. I'm already handicapped because of my left ear. I'm totally deaf for all intents and purposes now if I'm in a noisy room because the tinnitus in my left ear gets so loud, it just roars, and I can't hear a thing in my right ear because there's so much noise going on in my head.
OK, I guess everyone's busy or asleep. I'm going to watch TV and hopefully drown out this noise. I doubt I'll sleep but I'm going to try. Jesse, honey. The emergency room isn't a bad idea, at least calling them. God, that sounds really disturbing to have that going on in your ear. I hope you get some sleep, darling.
Aspirin can cause ringing in the ears. Let us know what the docs says.
Hugs,
Pip
Jesse, that would drive me crazy. I hope you get some relief soon. I didn't know they precribed MTX for tinnitus. But I see you're already taking it, wonder why it isn't helping.Jesse -
I found this because I knew about what your're going thru because a friend had the same thing happen to her.
http://www.lhh.org/about_hearing_loss/understanding/Ototoxic Brochure.pdf
Read the last paragraph on the bottom of the page - this is screaming 'jarisch-herxheimer' reaction. I'll keep searching.
If it is a herx - your hearing may IMPROVE!
Pip
P.S. Can you edit the Thread title to say 'hearing' - almost every drug we're on or I've seen mentioned on AI is on this list!
Jesse~ I cant give any advice since I havent expierenced that before. I would try and get ahold of a dr and if not talk to someone in the ER. Let us know what they say and I hope it gets better for you sweetie!Look what I found!
http://chambermusictoday.blogspot.com/2007/11/neuroprotectiv e-approaches-for.html
Do you have labs of your recent mineral panels? Look at the 2nd list!
The list on the bottom shows where he got the info - so I'll continue searching - moron didn't anotate it.
Pip
Jesse, I'm so sorry you're going through this especially with the hearing loss you already have. I have had tinnitus on and off attributed to several of the meds I take, especially the NSAIDs. Sometimes it lasts a couple of hours, other times 2 weeks, but so far it has always gone away without me stopping any meds. I honestly live in fear that it will start up and not go away again...I've just forgotten because it hasn't happened in awhile. I did some research on treatment and it seems the only thing that is truly helping people is a hearing aid that provides a counteracting noise frequency to mask the problem.
I hope this is a very temporary problem for you and that your doctor, or the ER, have some answers.
Thanks, everyone, for your advice and support. The ringing has stopped but I'm still not sure what to do about the Plaquenil. I haven't taken it this morning but my husband thinks it's a mistake to just stop it cold turkey until Monday. This is a man who HATES drugs and will not even take an aspirin.
I couldn't believe it when I called the RD office this morning and there is NO ONE on call. "If this is a medical emergency, call 911. Otherwise please call during office hours." Since the ringing has stopped I don't think a trip to the emergency room is appropriate, but they won't talk to me over the phone and give me any advice without seeing me. I guess liability is an issue. My concern at this point is, do I stop the Plaquenil until Monday or not? I may just take one tonight and one tomorrow, effectively cutting the dosage in half. If the dosage is causing the problem, maybe the reduced dose will keep it from coming back until I can talk to the doctor. I can deal with the ringing, it's the potential for damage that has me so spooked. I'm so angry. I've never dealt with an office before where there was no one on call. Even my dentist checks for messages, but that was in NJ. Maybe it's different here in NC.
Pip, those links were amazing. Where do you find this stuff? I couldn't believe the number of drugs that can cause this problem. I wouldn't be freaking out over this if I wasn't already half deaf. I can't take a chance on any more hearing loss. Pip, I printed out the list of drugs, but couldn't find the last paragraph you were talking about on the last page and an attempt to cut and paste the link didn't help either. I'm going to Google Jarisch-herxheimer and see what comes up. Thank you for taking the time to research this for me.
I don't take aspirin and I don't have any mineral blood work to determine if that might have any connection. At least I don't think I do. I don't really know what mineral panels are.
Innerglow, thanks for the information about your own experience. It calmed my panic a little, thinking it may be more common than I first thought and not as bad as I fear. I have decided I'm going to go to an ENT and get a complete checkup and give him my hearing/autoimmune history and see what he advises.
I ran out of space on my last post but I just wanted to tell you what a comfort this board has been for me, especially today. When my doctor wasn't there for me, you were. Even when most everyone was asleep and I couldn't get immediate answers, I knew that there would be someone responding and helping me through this in a few hours. The experience and advice of the veterans here is so valuable because you've been there/done that and can tell me things the doctor can't. Even my family and friends can't help me the way you can. That's no small thing.
Damn, it just came back, but only for a short time, then faded. What's going on?? Maybe I won't take any Plaquenil at all.
I know sometimes meds bother my ears. I do not have that much ringing in the ears, mine is mild and fleeting. You may also want to check anyway to see if you have an infection in your ears. Sometimes the nerves get infected and you can not feel the pain and you can have temporary hearing loss from that. Part of my ear problems are from the RA, part from meds, part from sinuses. They where going to send my to a balance clinic several years ago to check for maniers desease. You should see an ear specialist if you are having hearing problems, you maybe able to get some of this hearing back. And try cutting back on sodium. That is the first thing the balance clinic told me. Anyway i suffered hearing loss about ten years ago, but mine came back. Some odd condition that came and went ? I never followed up the balance clinic as mine self resolved about nine months after it had started. I still have some problems but they are mild in comparison to what ever was going on 10 years ago.
Jesse -
I've gotten quite good at Googling. LOL
OK - here's the last paragraph -
(Ironically, several of these drugs found
to cause tinnitus, are also used to treat
tinnitus (e.g., amitryptiline, benzodiazepine
class, carbamazapine, furosemide, lidocaine,
prednisone).
I kept searching and found something amazing. There are a lot of references to antibiotics causing hearing damage - and a lot of references to treating the damage with antibiotics. Plaq is an anti-something or other (Buckeye knows, I just forgot) which can kill off microbes too. If you look at the list of drugs that cause hearing damage - a lot of them work as immunemodulators. So...is it true damage...or an unaddressed infection?
I was able to find references to Minocin that say it helps protect the hair follicle in the ear. And myco's can live in hair follicles - hence vitiligo.
Have you ever had menengitis?
I do know how hard emotionally it is to be without hearing. My friend say's it's so lonely. But if there's a chance your hearing could come back, you might consider going on with the Plaq. There are tons of ancedotal and case studies linking infection to hearing loss, balance problems, etc. All side effects with Minocin. The only person who can make that decision is you.
Hugs,
Pip
Jesse,
I've had ringing in the ears before and seems like it is usually my left ear. I think that my problems have been excessive ear wax. I asked my gp about having so much earwax and he said some make some and some make too much, probably not the best answer but he gave me a large plastic syringe with a long plastic thin hose and told me to mix (i think) 50-50 close to body temperature water and hydrogen peroxide. Read this if you want:
Ringing in the ears, or tinnitus, is a condition in which people hear constant or periodic sound not caused by an outside source. The sound can also be described as a ringing, buzzing, or clicking noise that occurs inside the head. Ringing in the ears can be heard in one or both ears, and in the head, and its pitch may be low or high.
Almost everyone has had a form of ringing in the ears where ringing is heard for several minutes, such as after a firecracker explodes. While this ringing usually goes away in a few minutes or a few hours, it may come back as persistent ringing in the ears years later. Of the 30 to 36 million Americans who have ringing in the ears, seven million cases are so severe that those affected have difficulty performing the activities of daily life. However, most cases of tinnitus are mild.
Tinnitus is usually a symptom of another physical or psychological problem. It can be a symptom of ear conditions, such as infections or foreign objects or wax in the ear, heart disease, chronic stress, or persistent allergies. Additionally, it may represent a side effect from certain medicines (such as aspirin) or be a manifestation of excessive caffeine, nicotine, or alcohol intake.
Tinnitus is also linked to hearing loss, although not everyone who has tinnitus experiences a loss of hearing.
The mechanism that causes tinnitus is not known. Younger people tend to have tinnitus as a result of exposure to loud noise. Older people who experience tinnitus often have a certain amount of hearing impairment related to the natural aging process.
Currently, there is no cure for tinnitus. Tinnitus is usually treated by addressing the underlying cause. Because it cannot be cured, treatments are offered to help the patient tolerate the noise.
Exposure to a loud noise may predispose people to tinnitus [Table 1]. Long exposure to loud noise may cause people to hear sounds that do not exist in the external environment. Loud noises that contribute to tinnitus may be from a rock concert, a firecracker, a gunshot, a lawnmower, or an explosion. The sound may be either a single exposure (such as an explosion) or a continuous one (such as working in a woodworking shop or at a construction site) that damages the hair cells and nerves in the ear.
Existing physical conditions, such as ear infections or allergies, may cause tinnitus. Ear conditions such as wax build-up, infection, or a hole in the eardrum, as well as heart conditions, allergies, tumors, and injury to the head or neck can cause tinnitus, although researchers still do not understand why. Because tinnitus may be the first sign of a serious illness (for example, a tumor or aneurysm), it is important to discover the underlying physical condition that may be causing it.
Tinnitus may be a side effect of certain medications or alcohol. Tinnitus may be a side effect of drugs, including alcohol, aspirin, sedatives, antibiotics, antidepressants, stimulants, or anti-inflammatories. When tinnitus occurs as a drug side effect, it may cease when you stop taking the medication; however, it sometimes persists.
| Environmental noise | Physical conditions | Drugs |
|---|---|---|
| Construction machinery | Allergies | Alcohol |
| Power tools | Anxiety/stress | Antidepressants |
| Lawn mowers | Diabetes | Anti-inflammatories |
| Woodworking tools | Ear conditions (ear wax, hole in eardrums) | Aspirin |
| Explosions | Heart disease | Sedatives |
| Firecrackers | Injury to head or neck | Stimulants (e.g., coffee, tea, cola, tobacco) |
| Gunshots | Thyroid condition | |
| Rock concerts/ loud musical events | Tumor |
People with tinnitus suffer from hearing noise inside their head. The noise sounds like a ringing, buzzing, clicking, blowing, hissing, whistling, roaring, or pulsating sound. The sound may be constant or may come and go, and can affect one or both ears.
Sometimes, hearing loss accompanies tinnitus. Tinnitus is a symptom of some people who have hearing loss; however, not everyone with tinnitus has hearing loss or will develop a loss of hearing.
If you are exposed to either prolonged or intermittent loud noise, you may be predisposed to tinnitus. Although no one really knows what causes tinnitus, people who have been exposed to loud noises often develop symptoms of tinnitus. According to some experts, 90% of those with tinnitus have some degree of noise-induced hearing loss. While expert opinion differs on the exact noise level at which hearing loss occurs, it’s safe to say that prolonged exposure to noises louder than 85 decibels will cause hearing loss. For reference, normal conversation is around 60 decibels, city traffic noise is 80 decibels, and a hair dryer gives off 90 decibels.
If you have a medical condition such as heart disease, ear or sinus infection, thyroid disorders, head or neck trauma, or head tumors, you may be predisposed to tinnitus. Tinnitus can be caused by a variety of medical conditions that vary in severity from wax buildup in the ear to tumors and heart disease. Certain medications, such as some antibiotics (neomycin, streptomycin, and viomycin), indomethacin (an anti-inflammatory taken for rheumatoid arthritis), and quinine (taken to prevent malaria), may also activate tinnitus symptoms.
If you hear sounds such as ringing in your ears, you may have tinnitus. Your doctor will do tests to see if the noise you hear is related to an underlying medical condition. He or she may also refer you to a specialist for a more detailed examination of your ears. The sounds you hear may vary in pitch and sound like ringing, hissing, roaring, whistling, or buzzing. The sounds may be continuous or periodic. While a diagnosis of tinnitus is based on your own subjective experience, your doctor will do an exam and order tests to see if the sound is related to an underlying problem such as high blood pressure, kidney disorders, diet, or allergies.
Doctors who specialize in the ears and hearing will further evaluate your hearing [Figure 1]. Your doctor may refer you to an ear, nose, and throat doctor (otolaryngologist), who can do a more detailed exam to find out what is causing your tinnitus. Either the otolaryngologist or another specialist — an audiologist — will do a comprehensive hearing assessment. If indicated, the doctor will try to determine whether your tinnitus is associated with your inner ear or the acoustic nerve. This is important because unilateral hearing loss damage may indicate the presence of a tumor.
Figure 1. Anatomy of the ear Tinnitus can result from problems with either the middle or the inner ear. Hearing a pulsing, throbbing sound may be a sign of heart disease. If you hear a pulsing sound, you may have pulsatile tinnitus, in which case your doctor may order an angiogram. An angiogram is a type of x-ray taken after a special dye is injected into your blood vessels. These x-rays allow the doctor to check for blockage in your arteries, aneurysms (a weak spot in a vein or artery that balloons out and may burst), or small tumors in your veins. Special imaging tests, such as an MRI or a CT scan, allow the doctor to see the structure of your head, brain, and ears. Avoid exposure to loud noises and wear earplugs when you cannot avoid loud noises. Cotton balls do not provide adequate protection and may become lodged in your ear canal. A variety of affordable and comfortable ear protection devices are available today. Over-the-counter earplugs can be purchased at most drugstores and certain sporting goods stores. They range from the conventional foam variety to rubber, silicone, and wax. Besides being easy to find, easy to wear, and disposable, they provide important help in reducing the dangers of exposure to excessive levels of noise. Exposure to loud noise on a continuous or one-time basis causes symptoms of tinnitus and/or hearing loss. Some loud noises are worse than others and are more important to avoid [Table 2]. Specialists think that exposure to noise louder than 110 decibels (the noise from a snowmobile is 120 decibels) for more than one minute will result in permanent hearing loss. Prolonged exposure to noise of 90 decibels (the sound of a lawn mower) will result in gradual hearing loss. Very loud noises, such as that of a firing range or an airport runway, require special ear protection. Speak to your doctor about having special ear plugs made if you're exposed to very loud noises on a regular basis.Prevention and Screening
Table 2. Decibel Comparison of Common Noises
| Noise | Decibel (loudest possible: 196 dB) |
|---|---|
| Normal conversation at three to five feet | 60 to 70 dB |
| City traffic inside car | 85 dB |
| Train whistle at 500 feet | 90 dB |
| Subway train at 200 feet | 95 dB |
| Power mower | 107 dB |
| Jet engine at 100 feet | 140 dB |
| Normal piano practice | 60 to 70 dB |
| Average walkman volume setting | 95 dB |
| Symphonic music peak | 120 to 137 dB |
| Rock music amplified at four to six feet | 120 dB |
| Rock music peak | 150 dB |
Data from a study by Marshall Chasin , M.Sc., Aud(C), FAAA, Center for Human Performance & Health Promotion, Ontario, Canada.
Decrease your intake of salt and stimulants. Salt decreases blood circulation and can cause fluid to build up in your middle ear. Coffee, tea, cola, and tobacco can aggravate tinnitus symptoms.
Exercise daily and get enough rest to avoid becoming fatigued. Daily exercise improves circulation, lessens stress, and may improve tinnitus symptoms.
Wear ear protection when in environments where you will be exposed to loud noise. Ear protection such as earmuffs or earplugs should be worn in situations in which loud noise and ear damage is likely (e.g., occupational settings and rock concerts). Do not use cotton balls because they do not provide adequate sound protection and may get lodged in the ear canal.
Avoid drugs that cause symptoms of tinnitus (e.g., caffeine, tobacco, and certain medications such as aspirin). Medications that may cause a person to hear ringing in the ears are:
If you take use any of these drugs and your ears start ringing, call your doctor and ask him or her to re-evaluate the drug dosage. In addition, stimulants that can cause tinnitus symptoms include tobacco products and products that contain caffeine, such as coffee, tea, chocolate, and cola.
Your doctor is the best source of information on the drug treatment choices available to you.
If you have tinnitus, you may find that masking it with another sound gives you some relief. Because tinnitus is often more noticeable in a quiet environment, masking produces a competing sound at a constant, low level and makes the tinnitus less noticeable. Masking noises include a ticking clock, music, a ceiling fan, or radio static (e.g., white noise). A tinnitus masker is an electronic device that looks like a hearing aid and produces to cover up the tinnitus noise. Maskers allow people to ignore the tinnitus, which helps them to concentrate or fall sleep.
If your tinnitus is associated with hearing loss, you may be fitted with a hearing aid(s). Sometimes, patients with tinnitus also have hearing loss. For such patients, a hearing aid may reduce the tinnitus ringing or cause it to stop temporarily. Setting the hearing aid to an extremely loud level can make the tinnitus worse.
A hearing aid combined with a masker can produce a competing but pleasant sound that can distract you from the noise you hear in your head. This combination is recommended usually for people who have both hearing loss and tinnitus.
If you have tinnitus, you may want to seek outside support. A counselor or self-help group can help you learn to tolerate the tinnitus and advise you on what steps you can take to reduce the impact of symptoms on your life. The American Tinnitus Association (www.ata.org) is a good place to begin your search for help and to learn more about research advancements.
If you have tinnitus, you may want to consider biofeedback or relaxation training. Biofeedback involves monitoring the patients’ responses (e.g., tightness of a muscle) to a stimulus, and altering their response through relaxation. By lowering the blood pressure and relaxing the tense muscles, biofeedback aims to increase concentration and relaxation to help a person control their circulation and muscle groups, respectively. Biofeedback may be useful in cases of persistent tinnitus, or in cases in which patients are emotionally stressed. You may also want to investigate the new form of therapy available for chronic tinnitus sufferers called Tinnitus Retraining Therapy (TRT). This therapy focuses on retraining the way the mind processes the sounds of tinnitus. The goal of TRT is to reduce the patient's reactions to tinnitus and decrease the overall perception of tinnitus.
Ginkgo biloba and vitamin A may help reduce symptoms of tinnitus.
These alternative therapies have not been tested using FDA standards and have therefore not been proven effective. Alternative therapies should never be used as a substitute for a doctor’s care. Be sure to get your doctor’s approval before using alternative treatments because of the possibility of interactions with other medicines.
In mild cases, tinnitus often goes untreated. Mild cases of tinnitus may either come and go or present as a single episode of ringing that can be tolerated.
In a few cases, treating the underlying problem that is causing the tinnitus will eliminate the ringing completely. In cases in which tinnitus is persistent and severe, it can interfere with daily life. Medications offered for tinnitus are usually intended to treat the underlying condition. Sometimes, a medicine may help reduce or eliminate the noise. The treatments offered to help people cope with tinnitus are:
Lifestyle changes can help you to reduce the severity of the tinnitus symptoms. The choice of treatment is based on your age, health, and severity of symptoms. In severe cases, tinnitus can prevent people from performing their usual daily activities and from getting enough sleep and rest.
Contact your physician if your tinnitus symptoms get worse. Hearing problems that are persistent and affect your lifestyle may be related to an underlying condition. If your initial treatment does not provide sufficient relief from tinnitus, your doctor may re-evaluate the diagnosis and treatment strategy.
Report any drug side effects or complications to your physician promptly. Drugs prescribed for underlying conditions may have side effects that can potentially aggravate tinnitus symptoms.
Jesse,
I had it really bad with Plaquinil. Since I also had bad stomach problems with Plaq I decided it wasn't worth it. It won't hurt you to stop taking plaq without weaning. I stopped and immediately the ringing went away and so did all my stomach problems.
I still get Tinnitus from time to time, but not nearly so bad as when I was on Plaq. Of course, I would never want to tell you to do something without speaking to your doctor. I just wanted you to take a little comfort that it could be caused by the plaquinil and if so will get better immediately once you come off the drug.
Good luck and I hope you can talk to your doc on Monday.
Crispy
Milly, Pip, Levlarry, Innerglow, Crispy, thank you so much for taking the time to help me. The ringing continues to come and go but for very short periods now and much less loud. My research seems to indicate I could easily lower the dose of Plaq. without any problem but didn't say whether or not it's OK to stop altogether. Crispy's experience makes me think I'm might just stop it until Monday. Don't worry, I know this is my decision and if it's a bad one, it's my problem, but I appreciate you telling me your experiences.
The RD hesitated to stop the Plaq. the last time because if the hearing loss on the left side was from autoimmune inner ear disease, he wanted the protection of the drugs for the other ear. That episode only lasted 15 minutes and wasn't nearly as loud as this time. Damned if I do and damned if I don't. It's ironic that some drugs can cause or help tinnitus as well. Geeze, I'm so confused.
Right now I'm searching for a good ENT. I have a list from the insurance co. but am having difficulty getting information on which are the best ones. I have a rating site but that's not very complete. Can anyone give me some good sites for finding the best doctors in the country?
Well alright then ask the pharmacy about something to clean the wax out of your ears. Please check to make sure there is no infection. And try to cut back on sodium. It could take a week or so for results. But if your ears keep ringing it's going to drive you nuts. I would explore all options. My neck and spine swell and i have alot of buldged disk i know this adds to my problems alot, my head is simply under alot of pressure so these are just the things i do to deal with it. And i do have less sever symptoms than i used to but the swelling from the RA i think is my main problem so if you are swelling we need to address that also. It gets so complicated sometimes. And the doctors well. That agravates me. They say go to the eroom the eroom says wait and see your doctor monday as if i can always get in on monday, because they never want to change any of my meds. I carry all my blood work in my purse now in case i have to go to the eroom scince they did not believe i had RA last time i went.
Well now lets not try to make any bad decisions on are own. At least go to the eroom before you do that. They could at least run some blood work to check for infection and maybe you can talk them into running a mineral panel while your there. It could well be the meds but you already have a hearing problem before taking this med so please make sure you are alright. But continue searching for the best ent and you may need a referal.Milly, what you said about your neck swelling is interesting. I also have bulging disc, osteophyte problems in the cervical spine and my neck was stiff this morning. I wonder if there's a connection? Another question for the ENT/RD. My throat feels swollen at times too, like now and it makes it difficult to swallow some things. I know from a past question on these boards that this something others here have experienced. No doubt it's time to see an ENT. It's such a slow process trying to get ratings on Google. So many want big bucks for a report and I don't even know how good it will be. I'll keep searching for some free info if I can get it. I'll watch my salt but I really don't think this is an ear wax problem, but who knows. I just hope I can get in to see the ENT soon. No ringing right now. Hope it lasts. I was able to get used to the tinnitus in my left ear but it's not ringing, it's a static or roar or clicking which overall isn't as annoying as the ringing. Ringing is really hard to ignore. I would ask the RD for a reveral to an ent that is experienced in AI desease. And then give me the ent's phone number so i can go see him to. Hope you feel better.Yes, I guess I should ask the RD for a referral. I kind of have this prejudice that they refer their buddies, but maybe I should at least ask him about a name I came up with and see what he says and who else he would recommend.
I really hesitate to go to the ER since the ringing has stopped. If it starts again, I'll take the hint and go. Still haven't decided if I should also skip the p.m. Plaquenil. Tough decision.
Edited to add: Milly, do you live in NC too or were you kidding about wanting the name of the doctor I get? I'd be happy to share.
Good prejudice - they do refer to their buddies. :-)
Jesse, there was a post a while back on how to check out MD's. I think I started the thread and people here jumped in with other suggestions. Something like 'how does your MD measure up' or 'rate'. I think it was an LA Times article with links to info.
Pip
Yes, Pip, I put that in Favorites but none of the names of doctors I entered came up. If he/she wasn't rated by any of the patients, that doctor was not in the data base. No luck there. I found one who at least is Board Certified and studied at good schools. I have a couple of feelers out for people who may know him and his reputation.Could you find the thread here? I can't. :-) Anyway, there were other suggestions by people too - just can't remember what they were.
Did you ever have menengitis? I found a lot of links to reconstructing hearing after people lost hearing from that. I know it's a long shot that you had it...but it was cool reading and a possiblity.
Pip
Jesse88 i was sort of kidding but i might go to NC for a good ENT. I would like one that was a buddy to a reume myself one that knew something about AI. Also check your messages i sent you another pm. See i am thinking i really have a good ent but i never had a dx or bloodwork to back me up and he always said your dizzy from something else not your ears. And he was apparently correct. I always figured the dizzy went along the other ear problems. The actual joint that connects your neck to your back, I swell so very badly there and on mri at first my ortho surgen thought it was an old injury a herniated disk and sent me to a spine specialist and the spine specialist said no it's not a herniated disk you have a schmores node probably a birth defect but you have terrible arthritis all around this disk and all in your muscles and it is actually very very bad, that is why they thought it was herniated and an old injury and he sent me to a reume and i took the films and i got a fibro dx, all in one ortho clinic i had a surgen a spine specialist , and an upper body specialist. The spine specialist said i had arthritis and fibro, the surgen said i had RA systemic everywhere, everyjoint and muscle and the upper body specialist said fibro. But i could symetrically not lift either one of my arms at the time. Two reumes said fibro. But yes i think neck and spine problems effect your ears alot. But i do not think it would cause hearing loss if that makes you feel any better. It may cause ringing in the ears i think my pred does a bit of that maybe? But my ears have been inflamed on and off scince the start of this flare they usually just sort of itch when inflamed and hurt when infected. Some times they do not hurt until after taking antibiotics for a few days because the nerve that controls pain to the ears gets infected but i often experience temporary hearing loss when they get that bad. So now all of my blood work says RA. So i am going to make sure and ask the rueme about my ears also. My ent i sent him an mri of my brain that my neuro took as we were fighting over my ears making me dizzy and i got so sick i had to get my gallbladder out and i never called him back to see what it he found out. Well i had black sout come out of my furnace right after i had my gallbladder out and i was very busy and had a lump in my breast and just chalked it up to carbon monoxide poisoning at the time. I had seen the ent for years and he always said it is something else. So he could be right it could be the RA.Milly, I sent you a PM in response to yours. I just heard from a friend who has given us good recommendations in the past and said the ENT I found is excellent. I'll let you know if he's knowledgable about RA and give you his number if you decide to go ahead and see him. I'm calling first thing in the morning to get an appointment ASAP, even before I call the RD. Geeze, I feel like the walking wounded with all these doctors calls and appointments.
Pip, I've never had mennigitis. and no, I couldn't find the thread either. If YOU couldn't find it (you can find just about anything) I don't feel too stupid that I couldn't either.
I decided to take half my usual dose of Plaq. and slept well last night with no ringing. Unfortunately, today my left arm and shoulder is aching with spasms. I'm not sure if I'm feeling the reduced dose so soon or if it's a coinicidence. How long does it usually take to feel different when stopping Plaq.....anybody know? I'm so worried about this. If I have to stop the Plaq. to save my ear, what about my disease issues? How do I choose? I can't take sulfa drugs. Hopefully there is something else I can take that's not hard on the ears. Thanks for listening. I don't want to over burden my poor husband any more. He listens to me enough. Gotta divide up the whining, right?
Maybe I'm making a mistake here, but I'm counting Plaq like the antibiotics because they work in a similar way. I'm going to try and say what I got from all the searching.
The thing that freaked me out is that the list on the top is mostly drugs we take. Other articles said basically they use the same drugs that treat AI hearing loss as CAUSE the hearing loss. Pred can cause it and Pred can treat it. There are references to docs that use Mino to treat it - and links that say it causes it.
This, to me, is exactly the issues we have in our bodies attack us vs. attacking a intracellular infection.
There were references to the dosage being the key. The higher the dose the more the chance of hearing damage. Whatever med you do, you do not want to do high doses. JMHO. If you ever consider antibiotics - you would not want to do the Harvard Protocol (daily) you'd want the Dr. Brown protocol - (M,W,F).
You need to pull your old records - what exactly happened? Was it the inner ear? The cochlea (spelling)? The hair? This is really important in figuring out what your danger is from and what could help.
If the hair cells were killed off - I'd keep going with the Plaq and or the Mino - and that's just me. As you know, I'm totally into the infection connection and Mino offers protection to the hair folicles. It could get worse before it gets better...but hope is hope. If it were the others, then knowing for sure can really help me with the researching. Can you go get the info on Monday?
There were a ton of references to mycoplasma being present in the inner ear. The biggest offender seemed to be strep. Which makes sense as it's darn close to the tonsils.
I've been debating whether or not to post this as, coming now, it sounds like so much BS - but I'm partially deaf. I miss middle ranges. I can hear anything at the top and the bottom of the scale but the middle ranges get muffled and if somebody isn't facing me I have trouble understanding everything they say especially if there is running water of something similar in the way. I am very loud by the end of the say. LOL
For the last week I've noticed that I'm hearing better. Not perfect, and not enough to post that 'Mino cured my hearing!' - but enough so that I've been going around 'yawning' as something is popping in my ears. Heck, I didn't even suspect the Mino until I started researching. This probably makes no sense, but I'm trying to explain.
So, I see your post and wonder and start researching and...I had strep all the time as a kid.
And I was hoping you had menengitis - they found those guys had a hole that developed from the infection and when they stapled it and packed it with muscle, the hearing came back. Anybody look for a hole?
Pip
P.S. I'd chose no pain over the hearing, but that's me. My friend would chose the hearing over the pain.Jesse,
I don't think that changing 1 dose to half what you were taking would do a thing to symptoms overnight. Since it sometimes takes plaquinil 6 months to begin working, one half dose lighter, does not seem to be enough to make a difference.
But, being so stressed about this new hearing problem, could be a huge problem in having more pain and especially muscle spasms and muscle pain. When we are stressed all our muscles tense up badly. If you have muscle relaxers take them regularly at the moment and try to relax. Do you take baths? That is the first thing I do when the muscle spasms get bad.
Geez, I sound preachy don't I? Sorry for that, just feel so bad for you and wanted to help. So, forgive the preachiness, please?
xoxo
edited stupid spelling errors
Pip, I'm ashamed to say I don't know exactly what part of my ear is damaged. The records are in NJ. The deafness happened suddenly several years ago. At the time they thought it was a virus because I had been sick with a terrible head cold and conjuctivitis in my left eye and three months later I went deaf in the left ear. I always wondered how it could take three months for the virus to destroy the ear, but that's what they said at the time. The second opinion ENT concurred. But now with all this going on, the RD thought there might be a connection but he's not sure. In any event, he wanted me to stay on the drugs if for no other reason than to protect my right ear, if it is autoimmune inner ear disease that deafened the left one. At this stage, I doubt antibiotics or anything else will help the left ear. I was put on steroids and tried accupuncture and nothing helped. I can only hope to protect the right ear, which is why anything remotely wrong with it puts me in a panic. No more ringing today, thank God.
I will ask the new ENT what part of the ear is usually damaged with my kind of loss when it's either a virus or auto. inner ear disease. If needed, I'll have my old records pulled and sent to him. Wouldn't it be wonderful if an antibiotic could make a difference, even after several years? I don't dare hope for that but stranger things have happened.
I also was floored and so confused about how the same drugs that can cause hearing loss can also treat it. Unbelievable. Do you consider 400 mg. daily of Plaq. a high enough dose to be dangerous ear-wise?
BTW, nothing you post sounds like BS. You've done a lot of research and you really know your stuff. Your willingness to research and secure information on my behalf has been a great comfort. You have a very generous spirit. Thank you and thank you to everyone who has been helping me through this scary weekend. It would have been SO much more difficult if I couldn't vent my fears and anxiety.
Pip, I'm really excited about the improvement you've had with your hearing loss. It sounds like you don't have any long term or permanent damage so there's great hope for you. Even a small change is wonderful!!! I am so so happy for you. I hope it continues until your hearing is back to normal. Please continue to update us on all your AP improvements as they happen.Jesse, I'm a bit late in coming to this post. I hope you are doing much better now. I hope you find some information from the doctor. I wish you perfect health! love, jTomorrow, why don't you call the hospital and MD's office that have your records. Send them to yourself so you can start a binder of your info. You never know when you'll need it again. Hospitals have whole departments that process those requests. Call and ask them to fax you the release of information paperwork. Then fax it back. Get everthing anybody has - doctor's notes, X-rays, MRI's whatever - somebody had to look in there and I'd bet the farm they took pictures.
I'm not trying to get your hopes up but...there looks like there are 2 things that could have happened to remotely be called AI. 1) it's the interior bones and/or cochlea (spelling) and if they were destroyed like joints get destroyed - there is some cool research coming out on cochlear implants. #2 is my favorite - the hair follicles get wizzened and kind of die off. That's the one I'm hoping for (for you). Here - and I know I'm stretching - if it's like vitiligo (my baby has that) then the microbes get in the hair follicle and screw up the root. Sometimes the root dies - and sometimes they co-exist in there. My daughter has baby fine body hair still growing out of the white patches on her skin. If something like that is going on - then - in theory - you could try something to see if you get hearing back. I mean, what do you have to lose?
And - why would a virus/bacteria (isn't conjunctivitis bacterial?) make a small hole for menengitis and not for something else? Maybe there's a hole and you have to get somebody to go in and look again. I mean - why not? They know a lot more now than they did even 10 years ago.
As an interesting note - they can even repair broken ear drums now - my Mom went in over 60 YEARS after her's burst and they thought they might be able to get it repaired. They weren't able too...but told her to hang on...they were working on something else.
Hugs,
Pip
I was just looking at the list of auto immune deseases. Wow there is an auto immune inner ear disease. Wonder if that is why my ear drums are always inflammed? Guess i will research that one.All right i am a little slow just read the other post you are already on to that inner ear disease thing. But i am going to check it out. My ear is not so bad today, yesterday it was.Milly, yes, yes, yes, please get that checked out. I had no idea there was such a thing as AI inner ear disease until recently. Don't mess.
Juliah, thank you for your comforting words. It really does help.
Pip, I am going to call the ENT who treated me for the hearing loss. I'll ask him to send all the records to the ENT I'm going to see next Wed. I'm pleased I was able to get an appointment so soon, thought I'd have to wait at least a couple of weeks and they promised to get me in sooner if there's a cancellation. No more ringing so I feel like I can wait till then. I remember when I lost my hearing last time I was able to get in to the doctor within a couple of hours but it didn't help anyway. Fortunately, I don't think it's as urgent this time because I can hear OK.
I'm waiting for a call back from the RD about the drugs.
Ok, but get the records yourself if you can from the 2nd ENT. You'd be surprised at how much they miss when you look at the stuff yourself. For example - I had something going on with my thyroid when I was first getting sick - but the docs said it wasn't related. Well, duh, it is too. If I would have seen that I might have been able to head some of this off.
Or maybe not, but we'll never know.
Pip
Well, no luck with the records other than what I already have. Apparently the ENT doctor has retired. He treated me eight years ago and his office is no longer in the same place and I can't even find him listed anywhere on the internet. I have all of my hearing tests from 1999 to 2003 and the MRI that was taken to rule out a tumor. But I don't have the written file other than the notes mentioning steroids on the audiologist's notes.
The RD just called. He didn't think the dosage of Plaq. I take would cause the ringing and said it might be the disease process. Not good. I don't want to hear that. (no pun intended) I want to hear it's a drug causing it and I can control it. He doesn't want me to stop the Plaq. altogether and said to stay with the half dose until I see the ENT and don't stop the MTX (I didn't). He also gave me a prescription of prednisone to use if I lose my hearing during the holiday. He said to fill it and have it ready in case I need it. I'm grateful for that, it's what the ENT gave me years ago. I'm really worried he's right and this disease might be affecting my good ear. I'm going to start a separate thread to ask for others' hearing experiences with AI. Thanks for listening.