by Neil Bauman, Ph.D., with Susan Stoner
Susan Stoner, a lawyer wrote:
I am writing to you because I have discovered a way to reverse the symptoms of progressive Autoimmune Inner Ear Disease (AIED). After many tests I was diagnosed with bilateral AIED. The tests showed I had the classic heat shock protein in my blood. No treatments worked. Eventually, with the assistance of my oto-neurologist, I underwent plasmapheresis at a local hospital. [Ed. note: plasmapheresis is a procedure, similar to dialysis, that removes antibodies from the bloodstream, thereby preventing them from attacking their targets—in this lady’s case, the inner ear.] I experienced significant temporary improvement but limited long term improvement.
By June of 2006, both ears were involved. Tests showed that, in order for my right ear to hear, the sound needed to be at 66 decibels. My ability to distinguish words was at 8%. My left ear was following suit. We’d began discussing the probability of my needing cochlear implants.
Because I had noticed a marked reduction of the “fullness” aspect of the disease after plasmapheresis, I decided to try lymphatic drainage. [Ed. note: lymphatic drainage is a special type of massage therapy used to stimulate lymph flow in the body and to clear/reduce blockages in the lymphatic system.] I underwent the drainage procedure on a weekly basis. Initially I was very sick after each treatment as my liver tried to process toxins. Each week, however, I experienced improvement in my symptoms.
(Incidentally, prior to the plasmapheresis, I had plantar fasciitis in both feet that wouldn’t get better. One reason I decided to explore the lymphatic drainage approach is that the plantar fasciitis was immediately cured by the plasmapheresis. My problems seemed to stem from undiagnosed/treated Lyme disease in 1992. So, I have systemic autoimmune problems affecting my joints, thyroid, digestive tract and I’ve been diagnosed with Sjogren’s syndrome which is autoimmune and affects eyes, mouth etc. The lymphatic drainage therapy positively affected all of these to a lesser degree.)
After one year, I returned for a hearing test. My left ear was completely normal. I could hear in my right ear at 25 decibels and could distinguish words at 98%. I continue to have mild tinnitus in the right ear.
At two years, I have maintained the improvement. The downside is that I find I must continue the lymphatic drainage therapy to maintain the improvement—although on a greatly reduced schedule. And, insurance won’t pay for it.
My understanding of why lymphatic drainage works is that autoimmune diseases causes swelling which, in turn, causes the lymph system to malfunction. Then the toxins sit in the lymph system instead of getting flushed away through the blood and liver at a normal rate. When the lymphatic massage releases that blockage, those old toxins flood the blood and liver.
I am an attorney. I was facing the end of my career and the likelihood of cochlear implants. This was a terrifying experience and I had to fight very hard to find a solution. It took me seven ear doctors just to get a definitive diagnosis of AIED.
The reason I am writing this is that there are other people who are in the same situation. I believe they should have the choice of exploring the option of lymphatic drainage to reverse their AIED symptoms. Perhaps they will have the same good results I have had.
If you have AIED or other immune system conditions, you might want to investigate for yourself whether lymphatic drainage might help you. Read an excellent article on the lymphatic system here. In fact, you should snoop around the entire lymphnotes website. It contains a wealth of information on lymphatic drainage, and where you can find the professionals that provide lymphatic drainage therapy. For example, this page that lists lymphatic drainage treatment facilities by state.
Dear Susan –
My wife Anita and myself have serious hear problems. Mine is worse than Anita’s I have digital hearing aids but they are not the answer. We are having problems using our phone. We can no longer attend public meetings and visiting with people is not fun anymore. We are not sure what to do. But it seems that there should be something natural that might help restore our hearing. We have been searching everywhere and have not been able to find any help. Being on Social Security limits our possibilities also.
Lymphatic Drainage helped you, and restored your hearing? Was this whole body lymphic treatment or just head area. Are you still taking treatments. We would like to hear more details of your experience if possible. How often did you take treatment? We hope you will be able to recieve this.
Sincerily Yours –
Percy & Anita Wentland –
pawent@nctv.com
I just now stumbled on to your return answer that came up when I typed in my address into the internet for some unknown reason. I am wondering where to find some one who really knows what they are doing. I am wondering if it really is possible that this might help us ? How often were the treatments used ? What do they cost ? We are on Social Security. My how I wish we might find some help. This is an awful experience. Percy & Anita Wentland ~ pawent@nctv.com –
Hi Percy:
You and your wife have hearing loss, but you don’t say what the cause was. IF you have an autoimmune hearing loss, then investigating plasmapheresis and/or lymphatic drainage therapy may be something to investigate.
However, if you have the common sensorineural hearing loss from aging, then these treatments are unlikely to have any effect on your hearing.
Basically there is no medical treatment for this kind of loss. The standard treatment is to get and wear properly fitted hearing aids and supplement these hearing aids with assistive devices in situations where hearing aids don’t work well such as when you are at a distance from the speaker or are in a noisy environment.
An audiologist can help you with adjusting your hearing aids to work the best for you.
You can find a number of good assistive devices (such as I use) to help you hear better in various situations at http://hearinglosshelp.com/shop/.
Regards
Neil
Dear Neil –
We have still not been able to find any help for our hearing. It ruins our very existance. I have been to several ear specialists but they say there is nothing they can do. But no one has ever said anything about a systemic autoimmune problem. – “Sjogrew’s Syndrome. Did Susan Stoner just seem to stumble on to this cause of her ear problem and find help through Lymphatic Drainage ? When I was about 20 years old, I had a severe Strep infection in my throat and ears and had one of them was lanced for drainage. They treated me with Sulphanilamide for several days which had side effects. Maybe this has something to do with my present hearing problem? How can I find out if I have a auto immune problem?
Well, I just now stumbled onto you letter and felt impressed to write you to see if you might have any suggestions. If possible, I would appreciate an answer.
Percy Wentland
4210 Sun Drive NE
Moses Lake, WA 98837
pawent@nctv.com
Hi! I am hoping this story’s comments still gets read. I am experiencing AIED for past 4 years. I am extremely interested in trying your suggestions. Can you tell me more about finding a quality lymphatic drainage facility or person? What am I looking for in that person to ensure they are doing it correctly? Anything else you could provide would be greatly appreciated. I live in NYC so I would think I have a good chance of finding a place that does this or even a person who does this but want to make sure its done correctly. Thank you
Hi Jara, Have you gotten a reply? I live in NYC too and would love to know who to see, Best wishes, Debra
I myself have not found any help for my hearing yet! I still can’t even put on headphones as it causes severe pain in my ears. Can you please tell me the features of a quality lymphatic drainage facility? Frankly, I can only proceed with it if I know what it is and how it is done successfully.
Hi, we have three children aged 7, 9 and 13 who haveall been diagnosed with sensoneural hearing loss in the last 2 months. All three are being treated with steroids by our specialist as he suspects AIED. Their last audiograms showed some improvement so the steroids are continuing. Is this reversible? We are still in shock and feeling a bit lost…
Hi Kitty:
I find it strange that all 3 of your children have a sensorineural hearing loss. This is against the law of averages for both dominant or recessive gene inheritance–although it can happen. Especially since you don’t indicate that either you or your husband have similar hearing losses. Thus I would not expect their hearing losses to be genetic.
I find it stranger that all three of your children have been diagnosed with AIED. It is unusual for children to have AIED. It mostly affects women between the ages of 17 and 42–in fact 65% of all cases of AIED occur in women of those ages.
And stranger yet, is that fact that you didn’t mention any other autoimmune disease in your children. AIED generally occurs in tandem with other autoimmune diseases, not by itself. For example, autoimmune diseases such as Addison’s disease, ankylosing spondylitis, Cogan’s disease, dermatomyositis, Graves’ disease, Guillain-Barre syndrome, Hashimoto’s thyroiditis, insulin-dependent (Type 1) diabetes mellitus, pernicious anemia, polyarteritis nodosa, psoriasis, rheumatoid arthritis, sarcoidosis, scleroderma, Sjoegren’s syndrome (dry eye syndrome), systemic lupus erythematosus (SLE), ulcerative colitis, and Wegener’s granulomatosis often occur and are associated with AIED.
So I’m curious about what factors are common to your kids that caused the hearing loss. Common things could be exposing their ears to loud sounds, taking various ototoxic drugs and medications, viral infections, exposure to various environmental pollutants in the air, ground, water or food, etc.
I really don’t have enough information to help you at this point. You need to figure out a logical reason for their hearing loss so you can stop this process. If you’d like to contact me via email or phone (see the bottom of any page in the Center’s website) I’ll do my best to get you on the right track.
Cordially,
Neil
What I’ve read is that only about a third of sufferers have another autoimmune disease. In my case, it’s a stand-alone condition.
Neil,
I was first diagnosed with Sudden Hearing loss 6 years ago. I lost my hearing when on the descent during a flying trip to California. I have recently lost more hearing and have been told I have I Meniere’s disease. I do have a mild case of hypothryroid and have been on medication for 5 years. I wonder if I, in fact, have AIIE disease. I’m beginning to think most doctors have no idea what has caused my hearing loss. Do you know if this lyphatic drainage would help someone with Meniere’s disease?
Hi Karen:
What does your doctor base his diagnosis of Meniere’s disease on? And why do you think it may be AIED? Do you have another autoimmune disease?
If you really do have Meniere’s disease, rather than use this lymphatic massage method, I suggest you read my comprehensive article on how to get rid of you Meniere’s. You can read this article at http://hearinglosshelp.com/blog/atlas-adjustments-alleviate-menieres-disease/
Cordially,
Neil
I have autoimmune hearing loss. My first reaction to this story was to think it had to be untrue, but I did give lymphatic drainage a shot. No effect. I think this lady had some condition other than AIED.
I’m curious: how do most people with AIED turn out? Some sources lead me to think that most people with this illness go deaf, while others paint a mercifully rosier picture. I’ve had this thing for over a year now (technically for the last eight years if you count that first attack), and I’m surprised I’ve kept most of my hearing this long.
Hi William:
It is always possible that she had some other co-morbid condition, but the fact is that it worked for her and not for you. Perhaps you don’t really have AIED in the first place since you don’t have any other autoimmune condition. Did you have a second opinion regarding your diagnosis?
That you kept your hearing this long also makes me wonder if you really have AIED. But know this, there is a lot of variation in AIED in different people. And as you have read, the results are all over the place.
Cordially,
Neil
I’m not sure what else it would be. My doc has a good reputation, and he’s seen a lot of this. I tested positive for HSP70.
My condition is Meniere’s-like, but without vertigo. I experience sudden hearing loss episodes that can last anywhere between forty minutes and sixteen hours. Each one does a little bit of damage, but the first one of last year virtually wiped out the high frequency hearing in my right ear. My thresholds in that ear are in the fifties and sixties, but when sound is amplified to a volume I can hear, it’s heavily distorted. That’s an understatement, actually; it sounds like air coming out of a tire.
As the condition doesn’t respond to steroids, I’m pretty much at its mercy.
Hi William:
The fact that your “AIED” doesn’t respond to steroids to me is a red flag that you don’t really have AIED. Also, that you describe it as Meniere’s like without the vertigo–in other words cochlear hydrops.
The thing that comes to mind, and one I’d pursue if I were you is that the top two vertebrae in your neck are out, thus putting pressure on the 8th cranial nerve resulting in your symptoms.
I think, given what you have told me, that your C1 and C2 vertebrae are out of alignment. I’d go to a special kind of chiropractor called an upper cervical spine chiropractor. And even with these guys, I’d try to find one that practices the “Blair” method. You will likely find that your problem stems from these vertebrae being out of proper alignment. Doctors and conventional chiropractors are basically clueless about this so they typically won’t be able to help you.
To find a Blair upper cervical chiropractor (or indeed any of the other kinds of upper cervical spine chiropractors relatively near you, go to http://www.upcspine.com, then hover over “Practitioners” and select the continent you are one from the drop down menu.
Find your state or province (if you live in North America and click on “View”. You’ll see a listing of all the Upper Cervical chiropractors in your state. To find a Blair chiropractor look at the heading (about 2 or 3 lines from the bottom of each listing called “Upper cervical approach/technique used:” Look for Blair there. You’ll see other more common ones such as Atlas Orthogonal, NUCCA, Grostic, Knee-Chest, Palmer specific, Orthospinology, and of few others.
Hopefully, there is one not too far from you, but be aware that Blair chiropractors are not very common so it is not unusual that you’d have to travel 200 or more miles to get to one. If the distance is too far, you might want to try one of the others.
I’d ask the Blair chiropractor if he has helped people with Meniere’s before. If he has, he has a good chance of helping you if your C1 and/or C2 vertebrae are off.
I wrote a comprehensive article on the subject that you may find fascinating. It gives the reasons why these two vertebrae being out of oproper alignment can cause such symptoms. You can read it at http://hearinglosshelp.com/blog/atlas-adjustments-alleviate-menieres-disease/
Cordially,
Neil
Thank you for taking the time to write this reply. I will try to find the nearest qualified chiropractor and see if it works out.
I have had severe vertigo and other problems with my ears, including an auto immune disease and fullness in the ears. I was able to receive help for both my neck vertebraes and vertigo by using a chiropractor with 3 years of neurology training. https://www.acnb.org/DoctorLocator.aspx you can find names and locations at that link. The chiropractor neurologists have studied 3 extra years to complete their program. They can diagnose neurological problems that are essential to many chiropractic aliments. I was completely cured of vertigo. (I did not have crystals in the ears.) I hope this helps as additional information for your readers.
Hi Marcie:
Thanks for the information on the chiropractor neurologists.
Incidentally, you do have the crystals (otoconia) in your ears–everybody does. It’s just that yours were not out of place and causing benign paroxysmal positional vertigo. Your vertigo was probably due to your vestibulocochlear nerve being pinched in your C1 and C2 vertebrae.
Incidentally, there are other kinds of special chiropractors too, known as upper cervical spine chiropractor’s. You can learn more about these special kind of chiropractor’s at http://www.upcspine.com/ . They, too, know how to treat vertigo.
Cordially,
Neil
I’d really like to know how this all turned out. My son’s going through this.
Dr. Bauman, isn’t also plausible that William’s non-responsiveness to steroids is simply due to his being past the 30-day treatment window of time for this type of hearing loss? I, too, have symptoms (since February) that are basically Meniere’s without the vertigo and I don’t respond to prednisone. An ENT diagnosed AIED. I saw an upper cervical chiropractor practiced in the Blair method, as you recommended. She charged me $300 for an exam and x-rays only and said my C1 is PROBABLY out of alignment. Probably, I asked? She said she needed to take another x-ray from a different angle to determine for sure if my C1 is out of alignment, but she doesn’t take that x-ray until patients sign up for her $2,800 6-month program. I did not sign up as this business practice seemed somewhat dubious to me.
Hi Amy:
Yes, that is a good possibility since steroids typically only work well in the first two weeks or so after a hearing loss. However, you may still get some benefit up to about 30 days or so.
I’m shocked that your Blair chiropractor rips people off like that. I’d dump her fast! She deserves to go broke for being so greedy. I have no problem with her having a package deal, but she should also charge by the treatment if a person wants to do that.
You got ripped off as she should have taken ALL the necessary x-rays at your first visit. There was no excuse for not doing that. She’s just being greedy and as I see it, unethical to boot.
Cordially,
Neil
You two might be right. After about three weeks on steroids, I had two attacks.
I am beginning to wonder if steroids might, ironically, be the root cause. As more time passes, I learn more about the condition’s patterns.
To my recollection, all of my hearing loss episodes occurred after either taking a large dose of oral or injected steroids followed by no taper, or quickly making a large reduction (60 to 40 per day) while tapering.
The first one of 2015 – the really bad one – occurred after taking a steroid shot for a cold I had. The second occurred after a steroid shot I took for gout. The two that followed occurred after I down shifted from 60 to 40 mg at the urging of one of my doctors. After I bumped back up and tapered at a snail’s pace, the attacks stopped.
I’ve had four full on attacks this year, and all followed large doses of oral steroids. The effect can be delayed for a couple of weeks, so I didn’t notice it at first.
Maybe it’s just a coincidence.
Hi William:
You may be on to something there. Once could be a coincidence–but it is stretching it to have the same coincidence 4 times in a row.
Are you sure you have AIED and not something else?
Cordially,
Neil
I have always doubted the diagnosis, but it’s the only one I was given, so that’s what I tell people I have.
I’m going to try to stay off of prednisone for the next few months and see if that reduces the frequency of the attacks. Should be revealing.
William
To be so rare, I see a lot of people online who claim to have been diagnosed with AIED.
My condition is bilateral, so I sometimes doubt it could be the result of a tilted vertebra. However, I do plan to take some time off to go see a chiropractor in another state.
I would also like to get tested for low CSF pressure.
Hi William:
Rarity is subjective. It may be more common than doctors think. On the other hand, it may be wrongly diagnosed as AIED.
It sure wouldn’t hurt to be checked out by a competent upper cervical spine chiropractor to be sure everything is in alignment. It is possible to be out in such a way that it affects both sides, but it is more common to only affect one side.
Cordially,
Neil
Amy,
Thanks for the comment.
By any chance have you found any supplements or OTC meds that moderate your hearing loss episodes? Just curious.
Hello. I’ve just been told by an ENT consultant that I have permanent hearing loss in my left ear which was probably due to my ulcerative colitis. Reading these comments gives me some hope that with the right guidance it might be possible to retrieve some if not all of my hearing. Am I being over ambitious? Any advice/guidance would be appreciated.
Hi Carolyn:
It’s always possible, but I don’t know how likely it would be in your case. You’d have to find someone knowledgeable in plasmapheresis and lymphatic drainage and see what he says after he has looked at your history.
Cordially,
Neil
Thanks Neil. I’ll explore further.
My AIED was a sudden onset after the second Hepatitis B vaccine in 1998. It also cause rheumatoid arthritis symptoms in my feet at the same time. It took several years to really correlate what happened to me. After much research, there is a small percentage of Caucasians who have an autoimmune response to the Hep B vaccine. The RA and the AIED (I live with a bilateral cookie bite, R>L) has been a struggle and a battle and I keep looking for ways to “fix” it. Diet is the only thing that helps the inflammatory component. My hearing does wax and wane, depending on diet, my hormonal cycle and of all things the lunar cycle. Ugh.
Hello Dr. Bauman,
I have been diagnosed with AIED in both ears. I lost the hearing in the left ear about 1 1/2 years ago. I went to an ENT and had the standard prednisone shots in the ear as well as oral pills, nothing helped. In late Jan. of 2017, I started losing hearing in the right ear so immediately went to another ENT. Got the same treatment as before and slowed down the progression but have ultimately lost 95% hearing in the right ear.
This doctor did some blood tests and it tested positive & I have HSP 70. This ENT set me up with a hearing specialist in Denver right away and on June 21 I had a Cochlear Implant put in my left ear. They will turn it on July14.
I did take 2 Lymph drainage treatments, about a week apart, but they didn’t do anything for me. Do you know how long or how many treatments Susan Stoner took before they produced any results?
Right know my hearing is so bad, I have to use a dictating device on my I-phone about 25-50% of the time to talk to people.
Hi Virgil:
Sorry, I don’t know, but carefully reading what she wrote, I suspect she took a number, and then had to continue “on a reduced schedule” to take more to maintain the gains she had in controlling her AIED. So it seems she took a good number.
Your body is different so may require a different number of treatments.
Cordially,
Neil
Hi Dr Bauman,
I started experiencing hearing loss and fullness in my left ear in Oct. 2016 after having an upper respiratory sinus infection. . I saw my ENT and he referred me to Vanderbilt in Nashville , where I live, to consult with an ENT there. I had the steroid shots in my ear, which did not improve my hearing. I did get a very good hearing aid that helps a lot. Tinnitus started in June, 2017 after my knee surgery. I had to take aspirin so the doctor thinks the aspirin brought on the tinnitus. I was diagnosed with Miniere’s . I have not had any vertigo. I do have a history of ulcerative colitis and had surgery in 2000 at the Cleveland Clinic and now have a j pouch. When I was up in Cleveland for a pouch check recently, my doctor said that my hearing issues could be autoimmune related. My regular ENT and the specialist at Vanderbilt know about my ulcerative colitis history but have never mentioned AIED. I need help in getting them information on AIED so they can find out if this is, in fact, my problem.
Thank you,
Cathy
Hi Cathy:
I find it interesting that you’ve had an autoimmune disease for at least 17 years and probably a lot longer, yet hearing loss only showed up last year–and then only after having a viral infection. Furthermore, Prednisone did not help.
From what I understand, Prednisone typically helps in the case of AIED, so that is one count against your having AIED. Second, it took so long to materialize after your first autoimmune disease. That’s two strikes right there.
You got tinnitus after knee surgery. Aspirin could do that IF you took very high doses of Aspirin–say 6 or more adult aspirin a day. But tinnitus from Aspirin almost always goes away when you stop taking the aspirin. It seems in your case, it didn’t go away. My money would be on any antibiotics you took during/after your knee surgery. THEY could have caused permanent tinnitus and also caused hearing loss.
What symptoms did your doctors base their Meniere’s diagnosis on? The main one is vertigo which you don’t have. Do you have a fluctuating hearing loss–mostly in the lower frequencies?
From what you mention, I don’t see that you have Meniere’s either. I think your ears were attacked by the virus you had in October, 2016. That could account for the hearing loss and feelings of fullness in your ears. Tinnitus would likely have come from any drugs you took and also tinnitus very often accompanies hearing loss.
Personally, I don’t think you have Meniere’s or AIED. But what do I know? I’m not a medical doctor, and I’m working with very limited information–just what you have told me.
Cordially,
Neil
Hello,
Quite interesting, I also had a SNHL in my left ear in Nov 2017 steroid injection in my ear fully returned my hearing. With no vertigo and no tinnitus, I was also diagnosed with MD by two top doctors in Canada. I keep having hearing loss in my left ear but no permanent loss . Today my ENT suggested that I may have an autoimmune condition not AIED.
Have done NUCCA and lymphatic drainage regularly in the last 3 years, no salt , also on anti inflammatory diet. But the fact that I don’t know what I have what is the prognosis, and constant fulness is taking my patience away. Any suggestions would be appreciated.
Hi Rosi:
Why does your doctor think you don’t have AIED–which IS and autoimmune condition? Did he suggest what autoimmune condition he thinks you might have?
Since you are going to a NUCCA upper cervical chiropractor, I don’t see how you can have Meniere’s disease–assuming he is keeping your neck in proper alignment.
When you have an audiogram done while you have hearing loss, what does your audiogram show for hearing loss by frequency?
Is the feeling of fullness constant or only while you have the hearing loss present?
Your answers may help me narrow down what you may have.
Cordially,
Neil
So happy to have found you on here and still responding. My son has suffered 7-8 SSNHL episodes . He takes 48 ml. METROL for about 6-8 weeks and can regain all hearing every time. He took a drag off an ecig and this caused the Sudden Hearing Loss . He has been diagnosed with AIED due to a positive response to steroids. He’s been having hearing drops about once a year. It takes everything out of him. This is affecting his whole life. It started 2 weeks before HS graduation, he’s now 25. Can you give my any answers?
I’d so appreciate it , I’ve gone far and wide to get some answers. I haven’t run across anyone who can recover every time.
I need to add, he has seen a “cranialologist” he’s kinda out there, but when he’s suffering the hearing loss, this can offer a LOT of relief from fullness.
Hi Kim:
Are you saying that he took just one drag of an ecig, and since then he has had 7 or 8 bouts of sudden hearing loss that Methylprednisolone (Medrol) gave him his hearing back?
I’m not aware of ecigs causing autoimmune problems, but I suppose it is possible. If he has sudden hearing loss and the Medrol restores his hearing every time, that does sound like AIED.
Does he have any other immune diseases or conditions? In my experience, typically AIED does not occur alone, so I’d expect another immune disease to also surface. To me that would confirm that the AIED diagnosis was right.
What makes you think it was an ecigarette and not for example the result of a vaccine?
Cordially,
Neil
I had a car accident last December in which I hit the left side of my head quite badly. I was told I had a concussion but it would heal. Ringing in my ears began immediately and has remained. Then in May I suddenly lost my hearing (mostly in the upper ranges). I went to an ent who said I had a virus and he put me on steroids. It brought back the hearing but the ringing remained. In July it happened again and again steroids. Now it has happened again and steroids aren’t working. When I mention my accident to the ent he says there is no way it has anything to do with what is going on. I can’t shake the feeling that all this started with the accident. I have contacted an upper cervical chiropractic however he uses the Nucca method. I live in the middle of nowhere and the closest that does the blair method is hundreds of miles away. Do you think it is worth investigating?
Hi Kristina:
I think it is definitely worth investigating. If there is no Blair chiropractor near you, then go to any upper cervical chiropractor that you can find. They are ALL trained in upper cervical alignment. It’s just that the Blair method is much more gentle than the NUCCA method of treatment in my opinion.
Cordially,
Neil
Dr Bauman,
I live in Kentucky. This in regards to my 17 yr old son. Who has profound hearing ring loss in right ear only. It all started when he was 15. We homeschool and he mentioned that he noticed he could not hear very well out of left ear. Of course pediatrician here we come. same time I’m noticing that he is running to bathroom every time he eats anything. Not gaining weight and acne comes out of nowhere that covers his back and chest and face. So I start researching. Long story short, it’s celiac Disease. Meantime MRI has found 2 cholesterol granulomas in his petrous apex one on each side. Of course Lexington here we come. Well, the whole time his hearing is getting worse. Now he is having diz dizzy spells and vertigo not to mention his left eye is blurry and seeing double. So the professionals rule out granulomas. Lexington doctors state that it’s some kind of one sided Meniere disease. Back home his new doctor says says he doesn’t think so. In the meantime test results show he now has Hashimoto disease. We went to U of L seen Neurotologist. He said no granulomas are not applying pressure. He thinks it might be AIED or GJB2. We’re not sure yet but again his hearing is almost gone in left ear only. The right is fantastic. So my question to you is do you think this could stop whatever it is that is doing this. I just want him to feel better and be able to enjoy life.
I forgot to mention that it is sensorineural hearing loss. And my husband and I have no relatives that we can find that have this. We have one other son that suffers from gluten intolerance. But that is it. I myself have silent celiac disease , Hashimoto disease and suffer with gastroparesis and osteoporosis. They are still testing for other things. My son also has osteoporosis and we both have electrical heart issues. . I know this all sounds so weird. But really I all want is to help him get his hearing back. The Snhl hearing loss was noticed first. Please let me know if you have any suggestions. I have all the records if they would help.
Hi Jody:
I don’t understand why the doctors were “surprised” that it was one-sided Meniere’s disease. If it is Meniere’s, typically it is one-sided. I think it is only about 15% of the time that Meniere’s affects both sides at the same time.
Why does your doctor think it might be the Connexin 26 gene (GJB2)? This normally affects both ears, not just one, and typically shows up close to birth–not 15 years later.
When you say, “Do you think THIS could stop whatever it is”, what are you referring to–plasmapheresis or lymphatic drainage or both or what?
I have no direct experience with the above two conditions apart from reporting what the lady reported to me. I passed it on in the hopes it will help others.
Cordially,
Neil
Thank you so much for responding to me. I feel lost. I just want to help my son.
Okay so a blood test has shown that he has one copy of c.584T>C (p.M195T). (GJB2 gene)
It was the head of the ENT dept at UofK that said it was Meniere’s but that he had other symptoms that did not belong with it that confused him.. So he questioned Meniere’s . Thats when he gave diagnosis of one sided Meniere’s Disease.
But he has had a lot of tests done and if it would help I could share the results with you. I just want to know what has caused this. I want to stop it.
The neurotologist said within the next 5 years he would be completely deaf in left ear. How does he know it wont attack the right ear? And if he knows that why cant we figure out what is causing it so we can stop it?
Yes, i was referring to what Mrs. Stoner had done. But at this point I really dont care what method it is as long as it stops whatever it is thats causing this. I have been to see so many doctors and for some reason they cant figure this thing out.
The audiologist the other day dais that one sided sensorineural hearing loss is not common. if you have any suggestions i mean any at all. Please let me know.
Just to clarify the mistakes from the original statement it is the left ear. Right ear is fantastic. Thanks again Jody
Hi Jody:
How does your neurotologist KNOW that your son will be completely deaf in his left ear in 5 years? Can he foretell the future? The truth is that VERY few people go completely deaf–the ear can still hear some louder sounds, but it is true the hearing that remains may not be very useful because discrimination is so poor so you can’t understand speech. One such lady told me that when a sound is amplified enough to hear she can’t tell whether it is a person talking or a dog barking.
Whether it will attack the other ear is a good question. When you don’t know the cause of the hearing loss in the left ear, you have no way of knowing whether it will affect the other ear in the future or not.
Single-sided sensorineural hearing loss may not be as common as double-sided SHL, but it certainly occurs. I wouldn’t call it rare at all, just less common.
Has you son ever had any head trauma–sports injury to the head, been in a motor vehicle accident, etc.? That may give me a clue as to his condition (or not).
Since he has other immune system diseases, there is a strong possibility that he really does have AIED. I wonder why it waited until he was 15 to show up? Was everything good with his health up to that point?
Cordially,
Neil
I’m sure the Neurotoligist was basing that statement on sons many hearing tests that he has had done in the last year and a half. He also stated that it is permanent and that of course is not what I wanted to hear.
As far as trauma, we were rear ended back around that time however he was in booster seat. I had him checked out by ped. And he said everything looked good.
After that though my son went through this terrible separation anxiety. We had to seek the help of counselor. It was terrible.
At that time his hearing was normal. As fas far as we know. He was 8 then. The following year I started homeschooling .
It was the next year that he noticed his hearing being different. 2009.
That was first doctors appt. Ped said nothing to worry about.
Up until that point he looked great and as far as I know everything was normal. The
Following year ,2010, he started running to bathroom after he would eat. I didn’t know what to think so went back to ped. And he set us up with gastroenterologist. At same time I complained about hearing again and he also set us up with ENT. 2011.
ENT ordered MRI which shows 2 cholesterol granulomas. Same time had a scope done to see he has Celiac Disease. 2012.
At that point ball was dropped because ENT that we were seeing just up and left. So after numerous phone calls I finally found someone else . Now it’s 2015. We were then sent to U of K. Spent a little over a year driving back and forth only to be told by now hearing is to bad for hearing aid and his final diagnosis is one sided Meniere disease. Which leaves us with a lot of questions.. 2017 April is when we found out he had Hashimoto disease. May is when we went to U of K dr and he gave him shot in eardrum to stop tinnitus and vertigo. That worked. Did not restore hearing though.
This is when we decided to get second opinion from U of L dr. Which was last week. And he said either AIED or GJB2. And u know the rest of what he said.
So here we are still not knowing what the heck is going on or what to do. Is there a for sure way to know if it’s AIED. I seen something about shock protein. What is that? His doctor is very close friend. He wants desperately to help him. So if there is test we can do please tell me he also told me to look for autoimmune specialist.
At this point his teeth are in very poor health(rotting out), he has terrible rash on chest , back and face, and there is a round patch of hair that is solid white that just appeared above right eye, lost hearing in left ear, and has 2 granulomas in petrous apex. He was also diagnosed with Irbbb.
I can’t thank you enough for taking the time to listen to me. And giving any advice u can.
Like I said before I have copies of all his records and can send to you if necessary. If you know of specialist or tests we could do that could help just let me know.
I only want to help my son. Thanks
Hi Dr. Bauman – This post is very interesting. I’m wondering if you can just point me in the right direction on how to be tested for AIED. I have had about 2 years of bilateral hearing loss to the point of being at about 50% in both ears. I’ve been trying hearing aids since I’m 60 and still working. I was told that this was just genetic loss. But I do have Hashimoto’s Thyroiditis and one brother and sister that also have Hashimoto’s have some hearing loss also to a lesser degree. Can you just tell me the actual test I should request from my PCP that would indicate if AIED is a possibility and if so, seeing a Neurotologist is the next step? Obviously, time is of the essence since I’ve lost 5 db in the past 6 months and would love to address this immediately. Thanks again for all the great insight here!
Hi Therese:
I’m no expert on the tests the doctors use to determine whether you likely have AIED or not. You need to see an ENT or better yet, an otologist, and see what he says. Your PCP probably doesn’t have a clue.
Do you think you have AIED? Or are there other likely candidates for your hearing loss–such as taking one or more of the many drugs known to cause hearing loss.
What changed say about 3 years ago–anything? Did you have a flair-up of your Hashimoto’s, or did you start taking any new drugs or change the dose on existing ones for example.
At age 60, I’d think you are a bit old to have your first bout of AIED. So you need to look into other possibilities as well.
Cordially,
Neil
Dr. Neil,
I cannot begin to tell you how happy I am to have found this site. Please offer me any advice you have.
I developed one sided hearing loss in my 20’s and went through a lot of testing that resulted in NO diagnosis. I suffered with bilateral hearing loss and each hearing test seemed to suggest that the hearing loss was switching ears. In other words, one time the loss was worse in the right ear and the next it was worse in the left. I saw multiple ENT’s over the years and have been treated with multiple antibiotics for ear infections. I also had sinus surgery to remove multiple polyps from my maxillary sinuses. I finally moved to Colorado and met an exceptional asthma and allergy doctor who helped me immensely. She told me that I have hyperactive sinuses and told me to remove all chemicals and dyes from my home. I also needed to remove anything that is scented. So, I did all of that and over the next 6 months to a year, most of my “allergy” symptoms resolved. However, my ear issues did not resolve. I saw a surgeon who diagnosed Meniere’s without any testing. Since I didn’t trust him, I saw another ENT who diagnosed me with AIED. In December of 2017, I started the prednisone ( 4 week treatment) and my ears have been amazing since then. Even had a hearing test that showed some improvement. I have tried multiple hearing aids without success. Then suddenly, after a recent trip to Georgia, my plugged ears returned with a vengeance. I took Prednisone 20 mg once and had a horrible vertigo that left me vomiting for 4 hours. I thought that was a sign that my ears were unplugging, but not to be. They are as plugged as ever. I have had the Blair treatment but I don’t find it gentle at all! Feels more like he’s breaking my neck!
I am a nurse and this is affecting my ability to do my job.
I am willing to try anything as the plugged feeling in my ears is SO painful. Please offer me any advice that you have.
Dr. Bauman,
I have a 13 year old son who has rapid and significant hearing loss in both ears over the last 5 months. He has gone from “slight” to “moderate”, and after a recent audiology test is now between “severe” and “profound” hearing loss.
He has had a full physical, MRI, multiple EKG’s and seen 2 specialists, neither of which can pinpoint a problem. Mechanicallly everything looks fine. He’s going in for an Auditory Brain Stem Response Test next week. One specialist put him on steroids a week ago, and his last audiology test showed a slight improvement, so now they are leaning towards his hearing loss being auto-immune related.
Given the above, do you think he’s a viable candidate for lymphatic drainage?
Hi John:
Apart from the Prednisone, what makes his doctors think he has an auto-immune disorder? Typically, if you have AIED, you’d also have another immune system disorder. Does he have any other immune system problems?
Did the radiologist specifically check his MRI for evidence of Enlarged Vestibular Aqueducts (LVAS/EVAS)? That might be another possibility–especially if the hearing loss drops in episodes after he has had any head trauma (playing sports, bumping his head) or straining that puts his blood pressure up momentarily such as playing a brass instrument or changes in air pressure.
Is/has he been on any drugs or medications? There are many drugs that can cause hearing loss.
Does he have any balance issues–dizziness, vertigo, feelings of imbalance?
If he is an active boy, then I don’t really think lymphatic drainage is the real answer. If he is a “couch potato”, then maybe.
Does he have any back or neck problems–complain of tight neck, etc.?
As you can see, at this point, I have more questions than answers. The more I know about his situation, the better insight I may have.
Cordially,
Neil
Sincere thanks for the response.
Here’s about as much additional information I have right now.
My son has no other immune system problems that we’re aware of. He’s not inactive, he plays most normal boy organized sports, (soccer, baseball, basketball) and we take week long canoe/hiking trips.
He’s had one slight concussion in the past, a year or so back, but it wasn’t very serious. Never lost consciousness, had a headache for 4-5 days, his doctors are aware of this. He’s not on any other medications. He’s had some antibiotics in the past for ear infections, he’s had about the same amount as our other children.
I can’t say for sure if the MRI was reviewed specifically for Enlarged Vestibular Aqueducts, I’ll have to ask next visit. He does not suffer from imbalance or dizziness. He doesn’t have back or neck problems. He plays a couple instruments, (drums and violin), but always with musicians earplugs, so no loud sounds or air-pressure changes there. He’s starting to experience significant Tinnitis.
Another audiology test is scheduled for tomorrow. (we’ve been getting weekly tests the last 3 weeks) Up until recently, his air conduction and bone conduction results were following the same parallel downward path. Two weeks back, the tests took separate paths, the bone conduction leveled out, while the air conduction continued to get worse. The most recent test, a week ago, showed both bone and air conduction tests were ever so slightly better after a week on steroids. That, I believe, is the thought that it’s possibly auto-immune related.
So we’re still grasping at straws, any thoughts would be appreciated.
Hi John,
My son who is 4.5 years old now has the exact same problems as your son. He was fine until he was 4 years old with normal hearing. Past summer started with a mild hearing loss and in 5 months it has progressed to severe hearing loss on both years. The CT scan looks normal and no other indicators in terms of symptoms. He was on antibiotics last year for ear infection and strep throat.
The specialist put him on steroids currently and we are hoping they see some improvement at least in the next few days.
Do you have any new updates on your son’s condition? Was the diagnosis right – AIED? Curious to know since they both have similar issues.
Dr.Neil,
As mentioned above my son has been diagnosed with bilateral SNHL. We have consulted 5 different doctors and no one is able to find the cause. His condition has been progressively getting worse from mild to severe in just 5 months. One thing to note is gluten intolerant (just like me) and we introduced gluten into his diet 1 year ago when we thought he out grew it. He wasn’t showing any other symptoms and in few months started showing signs of hearing loss. We are not sure if they are related but I guess we cannot rule that out until we find the real cause. Have you seen any such cases from your experience? We really hope we can help him recover at least some hearing and prevent it from getting worse. Any information you have regarding this will be greatly appreciated. Thanks!
Hi Trisha:
I’m curious–did his hearing loss begin after he was on the antibiotics, or before? Anti-biotics are ototoxic so that is a possible cause.
I’ve not heard of gluten intolerance causing hearing loss–at least I can’t remember if I have heard of it.
Cordially,
Neil
Dr. Neil,
Thanks so much for your response.
The antibiotics he had was only Amoxicillin and all the doctors who reviewed his history told us that shouldn’t have affected his hearing. Is that not always true?
Hi Trisha:
I used to think that Amoxicillin was the one penicillin class of drug that was not ototoxic. Now, I’ve changed my mind and find it is the most ototoxic of the drugs in this class. In fact hundreds upon hundreds of people have reported to the FDA that they got hearing loss from taking Amoxicillin. So it is possible that the Amoxicillin caused his hearing loss. I’m not saying it did, but it certainly could have.
Cordially,
Neil
Dr.Neil,
Thats shocking to know. But the last time he took amoxicillin was in May 2018 which is when he had mild hearing loss. But in his latest hearing test in Dec he was in the severe category. If its antibiotics would it continue to progress even after a few months?
Hi Trisha:
It’s possible that the Amoxicillin gave him his mild hearing loss and a) either it caused the progression to severe loss, or b) it is something unrelated. I don’t think the Amoxicillin should be causing more hearing loss 5 months later, but I suppose it could be possible. The drugs that persist in the inner ear for months are the Aminoglycoside antibiotics. So you have to watch those, but I’ve never heard the same for the Penicillins.
Cordially,
Neil
Dr. Neil,
Is there some treatment/cure available if the hearing loss is related to antibiotics? This is keeping us awake all night knowing that his hearing is only getting worse and we are not able to do anything about it.
Hi Trisha:
The obvious answer is to stop taking the antibiotics and use more natural methods if that is possible. If nothing else works but antibiotics, then you have to decide whether you want to be deaf or be dead.
Even if you lose all your hearing due to antibiotics, all is not lost. You could get a cochlear implant and hear again with it. Cochlear implants have helped thousands of people hear again.
Cordially,
Neil
Hi Trisha,
I am just wondering what the current status is with your son since it seems similar to my daughter’s situation. We are at a loss as well. It is so rare and no one has any answer. I have never felt so helpless. All we do is read, read, read on the internet to see if there is something or someone that can help us?
Hi Karen,
Sorry to hear about your situation.
We are still at loss – MRI was done late Jan and nothing found. Nothing is known in terms of the cause. I’m not sure if his hearing is stabilized or worsened. Our next hearing test in only in end of April.
Just hang in there… this might be a very difficult time for the entire family but having hope will keep you going. Keep looking for answers and do keep us posted here if things change. Good luck!
Hi Doctor Neil,
I was diagnosed with lupus a year ago. Then went into remission. A month later I didnt realize I was loosing my hearing due to working in high volume loud places. Long story short first it was one ear, then abruptly the second ear. I finally found a doctor who recommended me to get on a steroid and then the other medication for my lupus. It got me very sick so I stopped the medication. A year later both ears are down to 90%. I am going to look into the lympathic massage along with a holistic doctor as well. I read this article when I was first Diagnosed. And to be honest, it’s the hardest thing to live with. I’m a dancer, mother, manager in a arena. And no one has answers. I too also was diagnosed with Sjogerns. This disorder can make you feel so helpless, especially since NO ONE understands it. And once it has anything to do with hearing loss doctors automatically say there is nothing they can do. Me writing this is my first step to fighting back! And getting my life back.
Hi Dr. Bauman,
My 18 daughter was just recently diagnosed with AIED by a otolaryngologistbecause of sudden bilateral hearing loss.She has had an MRI of the head and everything was clear. She was put on prednisone in December 2018 for a month treatment of 60 mg. She had a slight improvement in one ear. The doctor felt at that time it wasn’t autoimmune and started a ween at 10mg every 3days. Upon reaching 35 in the ween process she noticed he hearing had deteriorated so we immediately took her for a hearing test and it had dropped significantly in both ears. He then bumped the prednisone back up to 60mg and hearing and word recognition returned. She has had extensive bloodwork and it has all been negative showing no other primary source. They have started her on methotrexate and are doing a ween of 5mg of prednisone per week until
Methotrexate is fully in her system. We are having weekly hearing tests and her tones are dropping slightly each week but word regisnition is staying high. We are at a loss right now as to whether this is in fact AIED. We are being told because it is bilateral it is in fact AIED and too because she responded to the steroid treatment. My struggle is the fact that she was had a bad virus from July 2018 to October 2018. She had a round of amoxicillin and it didn’t clear up. She had difficuhearing during her sickness but we suspected it was from the illness. I took her back to the doctor to check her ears to see if there was fluid and he removed a large amount of wax from bothering ears which she had never previously had an issue with. We thought this had to be the reason attributing to the poor hearing but after a week we realized it wasn’t as she started to struggle once again. I then took her to a clinic and she explained her issues and they prescribed doxycycline for 6 weeks. She was on this for a week and a half and couldn’t tolerate it at all. She started having horrible bouts of vertigo and vomiting. 3 episodes in approximately a month span. We had a hearing test shortly after and found out she had moderate loss in each ear. The next day we saw the otolaryngologist and she started the treatment of prednisone. I am just curious as to what your thoughts are? If we should continue the current course of treatment or if you can offer suggestions as to what we may try.
Thank you
Hi Karen:
You don’t mention it, but does your daughter have any other autoimmune system diseases? Often, if you have AIED, you will also have other autoimmune system diseases. If there are no other autoimmune or immune system diseases, then I wonder whether she really has AIED. She might, but it is not as likely.
Certainly viruses could cause hearing loss and various balance problems such as she was having.
Also, Amoxicillin and Doxycycline can also cause hearing loss, vertigo, balance problems, and other ear problems–so those drugs could be the culprits or be contributing to the hearing loss. Amoxicillin is quite a bit more ototoxic than Doxycycline.
Do any of the above ring a bell with you?
Cordially,
Neil
Hi Neil,
No there aren’t any other autoimmune diseases present but our doctor mentioned that they could present at anytime in the future. She was sick with a bad cold and cough last July. She was given a round of amoxicillin in August after it wouldn’t go away. However, we noticed her hearing was bad in July before the antibiotic was given but assumed it was just from her cold. She also had a large amount of wax removed from each ear in August which at that time I felt was surely the cause of the hearing issue. After still not feeling 100% in October she was prescribed doxycycline for 6 weeks. After only a week of taking it she started to have severe vertigo and sore stomach and our doctor advised to stop taking it immediately. We then had the hearing test which determined moderate hearing loss in both ears. She started 60mg of prednisone in December for one month with only a slight improvement and then when weening off had a significant loss in both ears. At this time it was determined it was AIED. She has had an MRI with LVAS/EVAS being ruled out. They started her on methotrexate 7 weeks ago and are currently weening her on prednisone for the second time. She was responding extremely well to 40mg of prednisone and 20mg of methotrexate but since weening to 30 she has had another significant drop in the right ear which was her better ear. So it seems that the prednisone does hold the hearing at a high dose but like many others she isn’t tolerating the prednisone well. She has gained 35 pounds, has sore knees, ribs and back and is extremely irritable. She is starting to become depressed. We are conflicted as to whether we are just prolonging the obvious as we know she cant stay on that dose of prednisone forever. We have weekly hearing tests and just within a few days of her last test a couple of days ago I know it has dropped more because she isn’t hearing well at all. I understand that the antibiotics can cause the loss but would they still continue to present issues this many months after taking them? Do you have any suggestions as to what our next step might be. We are from Canada but willing to travel to the US for treatment if you could recommend anyone or any alternative options. Thank you!
Hi Karen:
If she has AIED, that means that her immune system is out of whack to use a fancy medical term. So one thing to do is find doctor that really understands how to get the immune system functioning correctly again.
The other thing is that as you know, Prednisone isn’t easy on the body and she will have to get off it sometime–the sooner the better it sounds like from what you describe. If she has AIED and stops the Prednisone, you may find her hearing drops more and fairly rapidly until she doesn’t have much hearing left. If that happens, then plan B would be to have her implanted with cochlear implants. She has a good chance of hearing well again with CIs and since her hearing loss is recent, she may be able to hear well right from the get go. I’ve known people with AIED that did very well with their CIs.
Cordially,
Neil
Hi! I was recently diagnosed with cogan syndrome. I had one eye inflammation and a rash on my hands that responded to steroids beautifully. I’m on steroids and methotrexate now and seeing slight improvement in one ear only. The other ear is eligible for cochlear implant. Do you think Lymphatic Drainage is an option for me?
Hi Frieda:
Unless your ear problems are caused by lack of adequate lymphatic drainage, I doubt that lymphatic drainage will make much difference. I have no experience at all with Cogan’s Syndrome and thus don’t have a clue whether lymphatic drainage can help. Wish I did though.
Cordially,
Neil
is the method you are talking about called brushing?
Hi John:
Brushing or dry brushing is a more general term. Lymphatic drainage focuses specifically on the lymphatic system, not the benefits of brushing the whole body.
Cordially,
Neil
I’m finding this thread intruaguing! I’m 41 started tinnitus in one ear end of Oct. MRI and hearing test in Jan. Mild loss of low frequency. Another this week and that has deteriorated RAPIDLY. Diagnosed with AIED and due steroid injection in 2 weeks. ENT doesn’t want to give oral steroids as concerned of the side effects as I’m already on the edge of depression and can’t afford weight gain. I don’t have much information about what is likely no be needed after this. Is there anything I can do to help myself on top of this injection? The procedures this lady presents or diet? Can this injection make things worse? Obviously tinnitus and fullness have spiked due to anxiety. I’d be so grateful for advice. I have flown this week and it’s been worse
Hi Simone:
Why did your doctor assume you have AIED and not Meniere’s disease for example. Meniere’s (or one of its forms such as cochlear hydrops) typically starts with a low-frequency hearing loss. In contrast, most hearing losses begin in the higher frequencies.
What happened back in October that might have caused your tinnitus? Any ideas? What was different? Did you begin any new drugs or medications back in Sept or Oct? Or change the dose on existing ones?
I wonder whether the AIED diagnosis is correct, and treatment needs to be based on what you actually have. Tell me more about your hearing/tinnitus history.
Cordially,
Neil
Hi Dr Bauman
I wonder if you have any advice. I am based in the uk and about 6 weeks ago after a flare up of bad diahorea I developed a loud deep sound in my head and subsequent noise distortion and hearing loss in my right ear. I am already completely deaf in my left ear following measles as a child. It was difficult to get seen but after 2 weeks I saw an otolaryngologist who put me on predisone and my hearing improved. He gave me a preliminary diagnosis of it being migrainous but since then I have continued to have bouts of noise disturbance & ear fullness/blocking & unblocking and the horrible loud noise has returned. I have more hearing tests planned in two weeks & follow up appointment as he thought it might play out to be menieres. I have dizziness on and off but no vertigo. I wonder if this is autoimmune? I have had bowel problems for years and bad acid reflux which worsened after gallbladder removal. I also have Hashimoto’s. I have also noticed symptoms in my neck. I’m very upset because I’m terrified of losing my hearing. There is no one in the uk that practises the Blair technique but I have found someone who is NUCCA trained. As I have one leg much longer than the other and back problems (due to being born with a talipes in my left foot) I am slightly nervous of any readjustments. I wondered if you had any thoughts on this.
Hi Roo:
My first question is what drugs did you take for the diarrhea. Could one of them have caused your ear problems? And also, which drugs were you on at the time. Acid reflux drugs could cause these kinds of problems too, just so you know.
Was the hearing loss you experienced in the low frequencies or in the high frequencies? Typically, if it were Meniere’s disease the initial hearing loss would be in the low frequencies.
Going to a NUCCA chiropractor isn’t a bad thing (I’ve been to one) since there wasn’t a Blair guy close to me either. He can certainly tell you whether your neck is off and get it properly aligned again. Mine was off 6 degrees–3 degrees in one direction and 3 in another direction. He got it down to less that 1 degree and my periodic episodes of vertigo went away and have never returned.
As for one leg being longer than the other, assuming you have your left shoe built up so essentially both legs are the same length, your pelvis and backbone should “hang” straight. If not, I can see a problem. But, in any case, make sure your NUCCA guy knows all about this and ask him to take the x-rays, etc. to see if your upper cervical vertebrae are in proper alignment or not–as well as the rest of your back.
Remember NUCCA guys are also conventional chiropractors and can work on your whole body.
Then you can sit down and discuss with him whether he thinks he can help you and not make things worse in your lower back if that is going to be a problem.
Also, since you already have Hashimoto’s disease, you may have autoimmune inner ear disease (AIED) rather than Meniere’s. But the chiropractor’s x-rays should be able to tell you which is which. For example, if your neck is in proper alignment, then you can rule out Meniere’s, and lean towards AIED.
Cordially,
Neil
I’m just starting having ear problems. It’s been six weeks now pressure in my ears, muffled hearing and now vertigo. Somedays the pressure isnt as bad some days it is. Just finished some steroids, but am having bad pressure today. Trying to figure out were to turn . They have me going next to physical therapist. I was diagnosed a couple years ago with an autoimmune disorder. Any advice would help?
Hi Mandy:
Which autoimmune condition do you have? Did they say you had AIED–autoimmune inner ear disease–at any point in time?
As I understand it, taking steroids stops/reverses AIED–at least while you are taking them. From the little you have said, it doesn’t seem that is the case with you, so maybe you don’t have AIED.
Are you taking any medications?
What happened in the few weeks before your ear problems showed up? What was different? Anything happen?
Cordially,
Neil
Hi, I was recently diagnosed with AIED this past October I am currently on treatment had 2 days of iv infusion and 3 months of prednisone starting at 60mg. Today I had my first lymphatic drainage massage. FYI not many to choose from in my area. She only worked my neck and and around the ear area. Was this the same for you or did you get a body lymphatic massage?
Thanks
Frances
Hi Frances:
I don’t know whether the lady I reported on had whole body or just head and neck lymphatic drainage massage. My thinking is that head and neck is the minimum and may be all you need. However, if your lymphatic system isn’t working optimally, then having a whole body massage could be helpful. Check with your practitioner. Perhaps having regular head and neck treatments with the occasional body treatment thrown in may be efficacious.
Cordially,
Neil
My almost 14 year old daughter was diagnosed with AIED few months back. She has a history of recurring middle ear infections and has had 4 grommets ops from the ages 4-11. She has been wearing bilateral hearing aids for 2 years now; 30% hearing loss. The recurring middle ear infections seems to be a condition she inherited from my husbands side as almost everyone in his family suffered with this as kids and teens; many members of his family have had ear/hearing issues from any early age (7years up). So guessing the AEID is from his side too. The ENT explained to me that AEID
doesn’t follow typical Mendelian genetics and thus very difficult to manage. He also mentioned he has never seen or heard of any patients as young as 13 to be suffering from AEID. The ENT has been treating her with cortisone, gradually reducing the dose and it has been stabilising the hearing; the last few audiogram results have been showing improvement in hearing by 10-15 decibels. He suggested she no longer wear her hearing aids till he can see what threshold of cortisone is required to keep the inflammation at bay. I would like to know if lymphatic drainage is a possible option for her. We live in South Africq so will have to check which facilities offer such treatments. Your expert opinion will be appreciated.
Hi Razia:
When someone is diagnosed with AIED, the first thing I want to know is whether they have any other immune system disease. If not, I wonder whether the diagnosis is correct or not, especially since your daughter is so young. So that would be the first thing I’d want to confirm with a second opinion from a doctor that is skilled in treating AIED.
I don’t see that middle ear infections are in any way related to AIED, but they do result in some degree of conductive hearing loss.
If your daughter has AIED, she should show a sensorineural hearing loss, and if the middle ear infections are still active, a conductive loss as well. This is called a mixed hearing loss.
AIED is typically treated with one of the steroid drugs such as Prednisone.
I’m not an expert on lymphatic drainage and whether it can help with AIED or not.
Cordially,
Neil
My mom has been suffering from B/L hearing loss for the last year. It started after having Covid. She has seen an ENT, tried steroids (had trouble controlling her blood sugar), tubes twice and a turbinate reduction surgery. She has not had success with anything. He has now told her he is out of options and suspects she has “an autoimmune ear condition.” He never came out and said AIED, but that’s what I am assuming. I am on the hunt for a lymphatic drainage specialist for her to see. How should we go about the next steps?
Hi Alexa:
If she lost her hearing a year ago or so, in my opinion it’s far too late to expect any to return. Normally, I tell people that what you have after 30 days is what you re going to have going forward. That’s assuming her hearing loss is a sensorineural hearing loss.
The Covid jab can disregulate your immune system so that it can cause immune system disorders. If that is her case, she could have something that looks much like AIED.
I’m not an expert by any means on lymphatic drainage. I reported what I know on the subject. I don’t know where to tell you to look to find a practitioner.
What is it you expect to happen? Is her hearing still deteriorating? And so you want to stop the progressing hearing loss, or what?
Cordially,
Neil