Teen with Possible TMJD and Chronic Headaches! - HELP!
For about 2.5 years, I have been suffering with chronic daily headache. The headaches have been progressively getting worse with fluctuating intensity: some days better, some days worse.
When I wake up, the headache is the most intense. I feel exhausted and unable to do anything with no appetite. The pain is equally distributed behind my eyes, and on my forehead. After about a few hours, I feel a bit better, but I still have the headache. Around half way through the day, my headache reaches a second climax, and I feel unable to do the majority of my school activities. Near the end of the day, the headache gets progressively better, until it is at its best right before bed. Before bed, I still have the headache, but I am more able and alert than any other time during the day. Then I go back to sleep, and the headache resumes. Because of this never ending hell, I have missed an immense amount of school, and I have been unable to participate in school activities that I would love to join. Also worth mentioning, eating makes the headache much worse. About 30 minutes after eating, the headache worsens quite a lot.
I am currently taking no medications, and I rarely take pain relievers because they don't work. Acetaminophen, Ibuprofen, and Aspirin do not work on me, and relieve little to no pain. Just out of curiosity, I tried antihistamines like Benadryl with no success either, and caffeine, like coffee, doesn't help either. In case you're wondering, I don't drink coffee.
What I have tested for:
Head MRI - Normal
3 Blood tests - Normal, no infections, but elevated bilirubin levels and low alkaline phosphates (which I have no explanation for)
Sleep patterns - I have tried sleeping more, sleeping less, sleeping at the same time, with no improvement
Water intake - I have tried drinking more, drinking less, and drinking regularly with no improvement
Health - I am a healthy weight, with normal blood pressure and blood sugar, but I have lost 10 pounds since last year, even though I grew a few inches, and I have had trouble gaining weight.
Food - I have tried eating a low sugar, low fat, low salt vegan diet for 2 weeks with no improvement
Oxygen levels during sleep - I underwent a sleep study, and it revealed that I have no sleep disorders except I twitch my leg and move a lot when I sleep, but that is not a big problem.
Allergies - I have tried cutting out milk, nuts, and other common food allergies with no improvement. I have seen an allergist; however, she did not recommend skin testing, so I am unsure if I have allergies to maybe dust mites
Eating times - I have tried eating at regular intervals, not eating before bed, eating after waking up, and various other patterns with no improvement
Body Temperature - I bought a thermometer to see if I had irregular internal temperature, and it was always normal
Stress - I do experience stress every once in a while; however, overall, I am not a stressed person
Eye strain - I stopped using my computer for 2 weeks and I read as minimally as I could, with no improvement. I saw an eye doctor who said that my eyes and eye muscles were completely normal.
Teeth - I don't clench my teeth, and I tried sleeping with a mouth guard with no success
Deficiencies - I have tried taking iron supplements (even though my iron, folic acid, and B12 deficiency tests were normal) with no success. I have also tried Zinc, Magnesium, Vitamin D-3, Panothenic Acid (B5), Calcium, Omega Fats, and daily multivitamins with no success.
I would greatly appreciate if anyone could provide input and help me! I should not be experiencing this nightmare at 15 years old (BTW, I am a male), and I am desperate to find the cause and regain my life back. I have seen at least 6 doctors (not all headache specialists) with no avail, and I am incredibly frustrated. Does anyone think I have TMJD?
Once again, thanks!
The following user gives a hug of support to icomputered: judye (06-03-2012)
Re: Teen with Possible TMJD and Chronic Headaches! - HELP!
So sorry to hear about what you have been going through – especially at such a young age. I would like to share my experience on a few things so hopefully you won't go through what so many people on this site (including myself) have gone through, namely not getting to the right specialist and not getting the right treatment. Really hard to say if it’s TMJ or not, but the fact that your pain worsens after eating incates that the jaw is involved somehow.
In my opinion, the most important thing is to find the absolute best modern neuromuscular dentist in your state and get his/her opinion. One word of advice about this: we live in a society where most fields are now standardized and generally, to practice within that field, you have to be competent. This means that when we go to a specialist, we can assume they will recommend the best practices in their field. This is an assumption we make about our TMJ specialists but the field of TMJ has not been standardized yet. The field has yet to agree on best practices (in fact there’s serious disagreement!). There are these two very different camps (traditional and modern), but even within those two camps, specialists practice very, very differently. This makes the likelihood of getting the wrong treatment quite high and finding the right treatment for you much harder than you’d expect (or possibly than you even know!).
The point of my saying all this is that if you are really suffering from TMJD, or something like it, just going to the local specialist or the first person who comes recommended may not be helpful for you – in fact, it could wind up being harmful. See your city’s best headache specialist – ask to be on his cancellation list if they quote you a year’s wait. Travel to the most well-reputed modern neuromuscular dentist in your state or province and don't decide on a treatment until you do. Ask your parents or caregivers to do extensive research on who to see - don't rely on the local specialist. I have a suggestion to help you in this regard, but you'd need to PM me for me to give it to you.
For the time being, do everything you can to minimize your pain. Here are a few ideas...
1) There are many other treatment that can help. I saw an excellent naturopath/Dr. of Chinese Medicine (he's qualified for both). See someone well reputed. My whole system was really taxed, adrenals shot etc, and someone in this area can really help in a way that western doctors can't (they might just offer antidepressants!)
I tried a variety of physio, chiro and acupuncture but none of them helped until I found ones that actually specialized in TMJ/orofacial issues. Once I found excellent practitioners who really knew about TMJ and how to help that condition specifically, I finally got help from these treatments.
2) Diet – Eating regular foods can exacerbate your pain, so have you gone to soft foods yet? If you are on a soft food or liquid diet (or regular food diet, student diet?) you may not be getting adequate nutrition and this can contribute to unwellness. There are also supplements, like magnesium, that can help with headaches.
3) Posture – poor alignment really contributes to TMJD. Being a student, you may be hunched over books a lot and this could be worsening your situation. I saw an excellent TMJ physio who really helped me. For me, staying in a correct postural alignment is really important in keeping out of pain and fatigue. The physio also guided me toward relaxing the muscles through application of moist heat (dry heat is less effective), jaw exercises and diaphragmatic breathing. All this helps loosen up tight muscles that contribute to pain and fatigue. Trigger points are usually a problem for people with TMJ and lock pain into place so this may be something that is worth addressing.
4) Night clenching:
I didn’t think I clenched either – but turns out I was wrong. I’d look further into this as you are waking up in so much pain. If you are in fact clenching, there is a variety of things you can do to improve it (feel free to ask if you’d like details).
5) Ultra low frequency tens machine for the jaw. This can really help your muscles to relax. They can cost a pretty penny and aren't always covered though. Most good NM dentists will have a home version that they allow their patients to try out for a while. Perhaps you could try this and see if it helps.
6) pain killers – none of the pain killers you mentioned worked for me either. The only thing that was able to dent my pain was oxcodone, which I was extremely careful about using. I found I could take 5mg – very small amount and make it more effective by adding caffeine. First you may want to try AC&C or Tylenol 3’s from your doctor.
I really hope you can get some answers soon and find some relief in the meantime. Try and remember there are people like me who have been mired in pain, fearing there was no way out, but have found relief and recovered. It’s a tough road, especially when you are suffering, but don’t give up. Find the best specialists, travel if necessary, and try as many things as possible to help relieve your pain until you do. Hopefully, it’s not too long before your biggest issue is deciding which school club to join I’m pulling for you – hang in there!
The Following 2 Users Say Thank You to judye For This Useful Post: icomputered (06-03-2012), MissyJ (06-03-2012)