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LDN Saved My Hearing: Sue's Autoimmune Hearing Loss Healed With LDN

Sue Christiance
February 01, 2017

Autoimmune hearing loss:

Autoimmune hearing loss is a rare condition in which the immune system attacks one's hearing. Various antibodies target the inner ear, leading to inflammation, which damages the structures in the ear, causing hearing disturbances and hearing loss.

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Sue, please share a bit about your health history.

I have multiple autoimmune related conditions. I was diagnosed with Crohn’s disease in my early 20’s. As a result of the Crohn’s, I also developed arthritis (not rheumatoid or osteoarthritis, but arthritis specific to Crohn’s), which was very debilitating at certain times. I also experienced iritis (inflammation of the iris in the eyes) and ITP (idiopathic thrombocytopenic purpura – a platelet disorder), also related to Crohn’s. In 2015, I also was diagnosed with breast cancer, which was managed with a lumpectomy.

About 3 years ago, my hearing went away and didn’t come back. That’s when I went to see an ENT (ear, nose, and throat) doctor, who confirmed it was not a regular hearing loss; apparently my immune system was attacking my hearing.

Aside from all that, I had suffered from tinnitus (ringing in the ears) for decades. At one point, I noticed that I was also starting to lose the hearing in my left ear. I would lose the hearing for a day and then it would come back. That happened repeatedly. It was not a profound hearing loss because I could hear noise--I could hear that people were talking to me--but if they were talking into my left ear, I couldn’t distinguish anything they were saying. About 3 years ago, my hearing went away and didn’t come back. That’s when I went to see an ENT (ear, nose, and throat) doctor, who confirmed it was not a regular hearing loss; apparently my immune system was attacking my hearing. I had never heard of autoimmune hearing loss before. My ENT told me that the percentage of people who experience it is quite small.

How did your ENT treat your autoimmune hearing loss?

Originally, he put me on a course of steroids (prednisone) and it worked like a charm. I took the first pill the next morning and by 4pm that day approximately 70% of my hearing had returned. I was thrilled. He tested my hearing again after the steroids, and it had fully returned. So, each time I had a hearing loss episode, I took prednisone. That worked well for about two years.

Then, during one episode, the prednisone hadn’t worked by the 7th day. I took it for an extra day, and a couple hours later, I developed extreme vertigo. The vertigo (dizziness) was so extreme, it left me only able to lie on the floor, not moving, and not opening my eyes. It was horribly debilitating. My ENT doctor said it was most likely a reaction to the prednisone, and that once the vertigo went away, if it didn’t come back, we’d know it was likely due to the prednisone (rather than a condition like Meniere’s disease, which can come and go). The vertigo didn’t come back, so we assumed it to be a reaction to the prednisone. Because of that, prednisone was no longer an option for me. So I was highly motivated to find another treatment option before the next hearing loss episode.

I didn’t find any information about LDN being used specifically for autoimmune hearing loss, but I figured that since it regulates the immune system and was unlikely to do any harm, it was reasonable to try it.
How did you find out about LDN?

Several years ago, I met with a naturopath who discussed LDN with me as a possible treatment for my autoimmune issues. But I subsequently developed breast cancer, so my focus was on that for a while, and the LDN went on the back burner. Later, after the breast cancer had been managed, and finding a new treatment for the hearing loss was the more pressing issue, I started doing online research to see what could be done. While I came across LDN in my research on treatments for autoimmune disease, I didn’t find any information about LDN being used specifically for autoimmune hearing loss, but I figured that since it regulates the immune system and was unlikely to do any harm, it was reasonable to try it. I reached out to my naturopath again and asked for a prescription for LDN.

When did you decide to take LDN and what was your response to it?

Right before I’d have a hearing loss episode, I experienced precursors: first, the tinnitus would get a lot worse, and then things started to sound a bit different. Later, sometimes days later, I would wake up and have no hearing in my ear. So the next time I saw the signs that a hearing loss episode was coming, I took the LDN. I experienced pretty rapid results. Within about 4 days, I noticed a difference in my hearing, and my tinnitus also got so much better.

What dose(s) of LDN do you take?

I started at 2.5 mg of LDN for a couple of weeks, and then went up 0.5 mg every two weeks until I reached 4.5 mg. I’ve stayed at that dose.

I haven’t had an attack of autoimmune hearing loss since I started taking LDN.
Have you had any more hearing loss attacks since starting LDN?

I haven’t had an attack of autoimmune hearing loss since I started taking LDN.

Have you noticed changes in your other autoimmune conditions since going on LDN?

I have a permanent ankle condition (not much cartilage left) that swells sometimes and hurts. I’ve noticed that the swelling is much better since starting LDN. Sleep, I’ve found, is also better. I used to have trouble with waking up in the middle of the night and not being able to go back to sleep. Since starting LDN, that has stopped. I don’t have platelet issues right now. After the lumpectomy for the breast cancer, I didn’t pursue any of the other treatments they recommended for me- so far so good. I also haven’t had any Crohn’s ‘gut’ issues, but it’s also been several years since I had those kinds of problems (well before I started LDN).

I also noticed a feeling of euphoria, starting after being on the LDN for a couple of weeks: not a wild amount of euphoria, just a general feeling of well-being. I just felt better.
Did you experience any side effects from LDN (negative or positive)?

I used to have vivid dreams quite often, but I only have them occasionally now, and they’re not disturbing. I also noticed a feeling of euphoria, starting after being on the LDN for a couple of weeks: not a wild amount of euphoria, just a general feeling of well-being. I just felt better. I actually don’t notice it anymore. I’m not sure if that means it’s gone, or if I’ve simply gotten used to feeling it. I recall reading something a doctor had written about how he used to “pooh-pooh” people who reported this feeling, because there was no way clinically to verify it, but at one point he, for some reason, had to go on LDN himself and noticed that he just felt much better. It makes sense that you’d feel better with a rush of endorphins in your system.

How have your healthcare professionals reacted to your being on LDN?

With each new condition I developed, I would go to a different doctor, and they would be narrowly focused on their specialty, not wanting to hear about anything else. My ENT is the first doctor I’ve ever had who was interested in the autoimmune process, and was interested to hear about low dose naltrexone. When I mentioned to my ENT that I was going to try LDN, he understood immediately the concept of how it works, and encouraged me to try it. He was not open to other things I had suggested, but he was quite open to this. After I told him that I’d had such dramatic results with LDN, my doctor said he would pass on that information to other patients.

When I mentioned to my ENT that I was going to try LDN, he understood immediately the concept of how it works, and encouraged me to try it. He was not open to other things I had suggested, but he was quite open to this. After I told him that I’d had such dramatic results with LDN, my doctor said he would pass on that information to other patients.

I also recently went to see my primary physician (who is an M.D.) and I mentioned to him that I’d gotten LDN through my naturopath, and I started to explain to him what it was. To my surprise, he knew about it. He said he had a patient with multiple sclerosis that had been helped greatly by it, so he was fully willing to write a prescription. Later, when I went to the compounding pharmacy to pick up my LDN, I mentioned to the pharmacist that they must not see a prescription for LDN very often. “To the contrary,” she said, “Many people in the Lake Oswego area are taking LDN, for multiple sclerosis and other disorders.” Despite that, I noticed that there are currently no M.D.’s from this area listed on LDNscience.org’s Find-A-Doctor directory, so I will ask my physician if he’d like to sign up, and I encourage others to do so as well.

Is there anything else you’d like LDNscience readers know?

When I was searching for information about LDN for autoimmune hearing loss, I didn’t find it. That is why I wanted to help spread awareness, in case there is some lonely person out there searching for information.

I think LDN certainly saved my hearing. I don’t know what I would have done if I hadn’t had LDN. The hearing loss probably would have progressed. In fact, what they do now with autoimmune hearing loss, as I understand it, is they just let it progress until it’s bad enough that a cochlear implant is needed. But cochlear implants have problems as well: my ENT told me that while you can hear with it, you can’t enjoy things like music anymore. So, I think that anyone with autoimmune hearing loss who is facing that possibility should really consider low dose naltrexone first. I highly recommend it.

More About Sue:

I’m 74 years old and retired from a career in vocational rehabilitation counseling. My husband and I enjoyed hiking and backpacking, and once took a month to do the John Muir Trail in the Sierra Nevada Mountains. Since retirement and being widowed, I spend time with friends, going to plays and listening to live music. I participate in strength training at the gym and in long form Yang Style Tai Chi and Qigong. I have a daughter and three grandsons and enjoy visiting them where they live in Hawaii. I’m also devoted to my two Labradoodles, who take me for walks daily. I can be reached at [email protected] if you have any questions about my LDN experience.