Maria's Hyperacusis & Tinnitus Story - Success!

Having no quality of life, to living normally again

Maria's Hyperacusis & Tinntius Story

Success!

  Maria is a lovely middle-aged women from Sweden, she acquired pain hyperacusis, severe reactive tinnitus, and loudness hyperacusis about a year after being pregnant. She was put onto many medications after her c-section, about twenty of them spread out, she says. Some of these medications have bruxism (grinding teeth) as a side effect, and she believed she got TMJD (temporomandibular joint disorder) from some of the medications. She also fell really hard onto the ground, on the side of her face, about nine years before all of this, and the combination of everything she believed caused her auditory symptoms. It all started with Tinnitus, and within a few months down the road, pain & loudness hyperacusis kicked in. She was getting pain from sounds, and everything sounded twice as loud as it should. She was also getting pain in her mouth, on her tongue, and even in the back of her throat.  

In the first- and second-year Maria only got worse, sound was hitting her from everywhere, from her children's voices, and their activities, outdoor noises etc. She tried to wear ear plugs to block sound out, unfortunately they made the pain in her ears and head worsen. Same with wearing protective earmuffs. She wore earmuffs mainly to sleep, so she could not have sound disturb her during her unconscious hours. She whispered very quietly to put her children to bed, to read them bedtime stories, and it was all too much for her, the pain was atrocious. She needed to find a solution to this awful problem. In the first year she had a two-week period in which, she was feeling better, and it came out of nowhere, so she thought she was getting better, only for the monster to return. Doctors did not believe her, and thought it was some kind of depression, which makes no sense. Maria was desperate and needed to find a solution. Her children were her main inspiration, to be a mother to the kids she loves so much. She plowed through, and did not stop until she found help. She tried a muscle relaxant medication in early 2024, in which helped her auditory a bit, it made her feel very nauseous though, so she discontinued the medication. Maria was living the worst nightmare imaginable, and she was contemplating suicide, she could not follow through though, because she loves life to much, and she needed to fight for her children. She could not be around her kids, like she wanted to be. Her youngest son went to live with his grandfather for some time, and her other children got taken away from social services. Maria was even pushed to live on her own for a bit without anyone, because of her ailments. Everything was hard, even with her partner as well, things were just a mess with her health, and a mess for the whole family.  

Maria fought with many doctors and specialists to try to figure out what the problem was, and none of them would really listen to her, all they did was gaslight her, and gaslight her some more, which made her furious, ignoring what she was going through. She told them that she had extreme pain in her ears, from everyday normal sounds, the pain happened more so from her speaking, she thinks one of the reasons is because of the TMJD, and having to move her jaw around, a mechanical dysfunction. She also concluded that she may have Eagle's syndrome, a rare condition characterized by pain in the face, neck, or throat, caused by an elongated or abnormally shaped styloid process (a small, bony projection beneath the ear) or a calcified stylohyoid ligament. This abnormality can irritate or compress nearby nerves and blood vessels, leading to various symptoms such as auditory issues. The pain was burning all over her face, ears and head, and felt like acid was pouring deep into her ears, had a burning mouth, pain at the back of the tongue, and things only escalated. Tinnitus got worse and worse, same with hyperacusis. She even had extreme pain in her skull, imagine that! She could not do anything with her children, go to the park, sit and talk to them normally without extreme pain etc.  

The following are posts Maria made in a Hyperacusis group on Facebook in 2021 & 2022, and just goes to show how detrimental these conditions really are, and how long she suffered for. How the "PHYSICAL TORMENT", can change one's well being. I know that anybody who has Hyperacusis & Tinnitus at any level. Mild, moderate, severe or catastrophic, would not wish the condtions, even on their worst enemy. The ailments may be invisible, they are exceedingly horrendous though,  absolute zero exaggeration!

Maria finally got through to doctor's and specialists to get imaging done. She begged for a CT scan to be done of the C-Spine, and surrounding structures of the skull, base, and neck area including the Styloids, for Eagles's Syndome. An MRI would be too noisy, and could worsen her auditory ailments, and more than likely permanently, the MRI is the only imaging procedure to show if the discs are off with TMJD, far to risky with hyperacusis & tinnitus. Maria says from the results from her CT scan, she could visually see Eagle's syndrome, as she did her own online research to see what it looked like. She says the doctors did not want to admit it; they said that whatever she was looking at looked normal. The doctors said that she might have slight TMJD, that was it though. She had to plead hard to see an Eagle's syndrome specialist, they denied her.  

Maria's CT Scan images

C- Spine & surrounding structures of the skull, base and neck area, including the styloids for Eagle's Syndrome

Maria took it upon herself to seek out a professional who knows how to treat Eagle's syndrome. She had a video consultation with a doctor in Germany named Dr. Nils Heim, and he helped her to diagnose Eagle's. The doctor said that from her CT scan, she has very thick styloids, and on both sides of the head. There were a lot of nerves, and tissues in the area compressing, and damage was present. Not many doctors on the planet know much about Eagle's, so Maria was very fortunate to find this specialist in Germany to help.   

She moved to another town in Sweden, to get surgery done. As she could not get the doctors in her own town to refer her to a specialist for Eagle's. She found a surgeon to do the procedure, Dr. Fredrick Landstrom, at the University Hospital in Orebro, Sweden. She consulted with the specialist, and he agreed to perform a styloidectomy (Take away the Styloid) This was in April of 2024, for her right styloid. Maria told the doctor that she did not want to take any ototoxic medications following surgery, as they recommended NSAIDS (Anti-inflammatories), so they gave her the Stellate Ganglion Nerve Block injection instead to control her pain. Following surgery Maria felt a lot better, after about three weeks, she believes a lot of relief was from the SGB Nerve Block, with the surgery combined, and she felt even better down the line, she really and truly thought that the surgery saved her entire life. A few months forward in August of 2024, she started to not feel well again, and had returning symptoms, pain was back. Maybe because she was living normally again, with her kids, doing things, going out etc. Or maybe it was because the styloid on the left side was still present. Everything in the area of the neck, head, ears etc. it's all connected, and with her having TMJD as well, things must have been out of line. Her C1 & C2, also known as the atlas and axis respectively, is the first two vertebrae in the cervical spine (neck), is crucial for head movement and support, as well as protecting the spinal cord. The C1 & C2 were rotated, as seen on the CT scan, and doctors didn't do anything about it. She engaged in Physical therapy, to help with all of this. Physical therapy was very important to Maria, and helped a lot. Maria also engaged in self-massage therapy, she had a cushion that massages, and she would use it on her shoulders and other areas. She has forward head posture as well, so the massage also helped in that department, she would massage for hours and hours, and would not stop.  

She consulted the surgeon about her returning pain, and he agreed to do the surgery again, this time on the left side, to remove the left styloid. This was in September of 2024, and was a success. Subsequent she also took a medication called clomipramine starting in January 2025, which is a tricyclic antidepressant (TCA) that primarily exerts therapeutic effects through potent serotonin reuptake inhibition, it is also used off label for pain, hyperacusis and tinnitus (hyperacusis & tinnitus patient's have figured out on their own), and many have seen relief from it. She started on the lowest dose 10 mg, three weeks later to 20 mg, three weeks later up to 50 mg, and now she is on 100 mg. Her plan is to increase to 150mg, she is not there yet though. With each increase of the medicine her tinnitus would raise for about a week, then it would settle back to baseline, and with each increase her Hyperacusis was getting better as well. Maria experiences restless leg syndrome, and insomnia from the medication, the benefits far outweigh the side-effects though.  

Maria believes it is the surgeries that has really helped her to make progress with her auditory conditions, to better live again, and addressing her co-factors as well, plus the medication, the whole combination She still has issues with her TMJD, that are not addressed, so she gets pain & tinnitus from moving her jaw around to talk and eat, but not from sound. She has slight tinnitus; she can live with it though.  Maria also had her upper right wisdom tooth removed, as she and the dentist, beleived it was infected, so this may have contributed to her healing as well. 

Maria is mostly pain free now and can live a normal hearing life again. She can go out with her family, has a better relationship with her partner. She can go to events, restaurants, and sound does not cause her pain or discomfort at all, also does not affect her tinnitus, and she wears no hearing protection. What a miracle! 

Maria encourages everyone to fight, and to not stop. A lot of people have a different root (s). So get to those doctor's appointments, if you are able, and find out what is going on. Even if you have to fight, and beg them for what you need. She did, and succeeded!

Her children were taken away from social services, because she lost her health, she was in a deep hole, and tried her best to fight with legalities in court. They thought that what she was going through was "mental", they did not believe that Pain Hyperacusis, Loudness Hyperacusis & Tinnitus could affect her in such a "physical" way. Maria had to prove that what she had was a "physcial problem" from medical records, she was able to do that, eventually. Then social services, said in court, seeing that she has a mental problem, and a physical problem with her ears, that she was totally unfit to be a mother to her children. Maria and her lawyer defended, and mentioned that there is a father who can take care of them as well, with both Maria and the father being together. It is total discrimination taking her children away, when there was a healthy father in the mix as well. At the end of the day, she healed her Hyperacusis, and Tinnitus to a point where she can live normally again, and once that happened, her mental health got better, and she proved it was the physical health, that made her mental health worse. It took a hard long fight, eventually she got the kids back though, simply amazing! 

The day she officially got her kids back!

Enjoying good times at the beach with her sons

Let Maria be an incredible inspiration to us all, she fought so hard until things got better, and she didn’t take no for an answer! Maria was an extremely severe case, having basically no quality of life, could not leave her apartment, and she got EVERYTHING BACK!  Because she is a true warrior, who fought and fought for her life, and WON! 

UPDATE:

Maria is now pregnant with her fourth baby coming soon, this story goes to show you that going from a highly severe case to healing, and now pretty much healed, that it is possible for some severe cases to get better with the right treatment protocols, it's all individual, and I pray and hope that we can all find our own way to getting better.

We all have a different path with Hyperacusis & Tinnitus, as there are different roots with these ailments. If you think that you have a similar case as Maria, hopefully this success story, can be of help. I think it is of help for us all no matter what, as Maria did not stop to look for answers, kept fighting, and made victory! I think we can all do the same to a degree, and just hopefully, just hopefully we all may get better one day, like Maria!

Maria is welcoming anyone to contact her, whether it to be patients with Hyperacusis & Tinnitus, their familes, and even medical doctors. She is willing to explain her experience, so people can better understand, and hopefull take the right actions, subsequent. 

May this story be of significant hope for everyone suffering! Victory!