Scheuermann’s Kyphosis: The Hidden Cause of a 25-Year Headache

I have had a headache every single day for 25 years. I am not talking about the ache behind your eyes because you’ve been staring at the screen or the thump in your brow due to allergies. No, I am talking about pain from eyebrow to crown and straight down the back of your head, through your neck and shoulders, down every inch of your spine all the way to your tailbone type of headache. For 25 years. That is 9,148 days ( as of this revision, including leap years!).

It’s a lot. It has taken a lot of effort to be able to function daily and work from 9-5 M-F. However, with a lot of research, hard work, and tears, I have made it to the point that most days just aren’t too bad.

There are many things I have learned along the way, and I hope that my story will encourage you or someone you know to push through the pain to find an answer because I almost didn’t.

Medical Professionals

I have been to so many doctors, I was beginning to feel like one. And I was in one doctor’s office so often that I quite often joked that I needed to have my own desk!

Type of Healers I have seen:

I saw a primary physician who sent me to an ophthalmologist. The ophthalmologist recognized that I had one eye that continually turned in and that “could” be the cause of my headaches. Except I had been dealing with the “lazy eye” since I was a baby and had surgery for it. The headaches started way after that. However, I took that into consideration and stopped wearing my contacts and got new glasses. The headaches didn’t go away.

The primary then sent me to an obstetrician. She told me that my headaches were because I had Poly Cystic Ovarian Syndrome (PCOS). Again, this was something I knew. And again, I took this into consideration and let the doctor put me on various medications to regulate my cycles and stop the hormone imbalance that I was having because of the disease. And again, the headaches didn’t go away.

With each doctor, the diagnosis list got longer. With each doctor, so did the list of medications that did not work for whatever reason.

Chiropractic Disaster

The biggest mistake I ever made, though I didn’t know it at the time, was going to a chiropractor for treatment. Initially, the adjustments made me feel better. But the headaches never went away. My guy wanted to see me three times a week to “get me realigned.” He told me it would “take time to fix what’s out of whack.”

When I told him I couldn’t make that trip every other day, he insisted that I would feel better in the long run. I went three times a week for five months. Since chiropractic practice was still considered “alternative medicine” at the time, I was paying out of pocket for my treatments. Finally, I told the doctor that I could not afford to go three times a week and he slowly (over the course of 8 months) reduced me to once a month. The less often I went, the better I physically and financially felt. Yet again, the headaches didn’t go away.

However, now I had a new problem. The lower and upper areas of my back always felt like they were on fire! I could sit perfectly still and get a sudden, sharp pain in one area and sometimes both. I returned to the chiropractor a few more times, and it only worsened. And then I realized that the pain “twinges” in my back were increasing the headache back to the original point of pain. I was back to not being able to function because now, not only did my head hurt, but my entire body!

What was going on???

Diagnoses

For the first five years, I was bedridden because of my headache. My kid was 4 ½ and I was trying to be a stay-at-home mom and take care of my child, but I could barely open my eyes, let alone spend time teaching the kid how to recognize his alphabet and numbers.

My then-husband finally got a job that gave us decent insurance and I started seeing doctors to try and figure out what was wrong. The list of diagnoses was endless. Here are just a few of my favorites in alphabetical order:

The list went on like that and continued to grow longer with every doctor, specialist, practitioner, and quack willing to try to help me for several years. Each doctor would supply a different, sometimes more unbelievable diagnosis than the last. It all boiled down to nobody could figure out what was wrong.

Medications

I had one primary physician who gave me just about every drug known to man at that time for a headache. Each drug produced side effects that were worse than the headache. Some made me break out in hives (any type of opioid). Others made me so tired that all I did was sleep (more than I had been to avoid the migraine). Trying to be a mom of a soon-to-be grade schooler did not work when I was sleeping 15 out of 24 hours a day.

I had the means and opportunity to find the answers so I could be a good mom, but I needed to actually be able to function. Still, I ended up with a medication list longer than my arm:

Medications I tried:

I Keep Carrying On, Headache and All

By the time I decided to no longer see the chiropractor, my husband and I split up. I no longer had decent health insurance and I needed to force myself to go to four different jobs just to keep my kid and me fed. It is amazing how you can push through the pain when there’s nobody but you to support yourself and a child.

I worked that way for five years. I slept as much as I could and ate as healthfully as possible. The headache was always there. There were even times I had to be at work in the public eye with a migraine so bad I couldn’t see the computer screen in front of me. But I had a child to feed. I needed to work to feed both of us and provide a place for us to live.

When I moved to a new state and finally found a job that supported me (I had healthcare for the first time in 7 years), I started going back to the doctor to see if things had improved in the migraine care world.

They hadn’t. Not really.

However, after several years of going through the same exact process I had while in Michigan, I got one diagnosis that made sense!

Scheuermann’s Kyphoisis

I fell through a deck and went to the doctor to check for injuries. He sent me for an MRI and X-rays. Both confirmed something I had never heard of before Scheuermann’s Kyphosis.

Scheuermann’s kyphosis is a condition that causes the spine to curve abnormally forward. It is most common in the upper back, but it can also affect the lower back. The condition is characterized by wedge-shaped vertebrae, which are caused by abnormal growth during adolescence.

Scheuermann’s is a round-shouldered or humped deformity of the spine that develops in early adolescence. This condition has been reported to occur in 0.4% to 8% of the general population, with an equal distribution between sexes. A diagnosis of Scheuermann’s disease is often found in a clinical examination.

Unfortunately, parents of children with this condition often mistake it for poor posture. This was the case with me. My parents constantly yelled at me to “straighten up,” “don’t slouch,” and “stand up straight!” Even when I told them it hurt to stand up straight, they told me to stop complaining and that I would thank them when I was older for having good posture.

Today, I have better posture than I ever thought possible, but there are still days when I have to sit hunched over because it hurts too much to sit up straight. Sometimes, sitting up tall even triggers a migraine!

I know that my parents were just trying to help, but I wish they had been more understanding.

Symptoms of Scheuermann’s kyphosis can include:

• Hunchback or round-shouldered appearance
• Pain in the upper or lower back or both
• Difficulty breathing
• Fatigue
• Reduced range of motion in the upper back

Scheuermann’s disease can cause headaches. The abnormal curvature of the spine in Scheuermann’s disease can put pressure on the nerves and muscles in the neck and back, which can lead to headaches. Headaches are also more common in people with Scheuermann’s disease because they are more likely to have poor posture, which can also lead to headaches.

A study published in the journal “Pain” in 2008 found that people with Scheuermann’s disease were more likely to experience a headache or migraine than people without the condition. The study also found that the severity of the disease was related to the severity of the migraines.

If you have Scheuermann’s disease and you are experiencing a chronic headache or migraine, it is important to see a doctor to rule out any other probable causes. Once any other potential causes have been ruled out, your doctor may recommend treatment options for your headaches, such as medication, lifestyle changes, or surgery.

Tips to help prevent headaches caused by Scheuermann’s disease:

• Maintain good posture. This means keeping your head up, your shoulders back, and your spine straight.
• Get regular exercise. Exercise can help to strengthen your muscles and improve your posture.
• Stretch regularly. Stretching can help to improve your flexibility and reduce muscle tension.
• Avoid sitting or standing for long periods of time. If you must sit or stand for long periods of time, take breaks to move around and stretch.
• Use a supportive mattress and pillow. This will help to keep your spine in alignment while you sleep.
• See a doctor if you are experiencing migraines. Your doctor can help to diagnose the cause of your migraines and recommend treatment options.

Conclusion

In the end, I finally know what has been causing my headaches for so long. I wish that there had been more information available about this condition when I was younger, but I am grateful that I know now. Knowing what is causing my headaches has helped me to manage them better. I am now more mindful of my posture and I make sure to get up and move around regularly. My research keeps me looking for support or even someday, the cure. I am also hopeful that with the right treatment, I will be able to find relief from my headaches and migraines.

I wanted to share my story with others who are suffering from chronic headache pain. There is hope for you. With the right treatment and support, you can find relief and improve your quality of life.