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Old 08-12-2005, 12:44 PM   #1
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New Daily Persistant Headache? TMJ?

I posted this on the headache forum a few days ago, and since TMJ seems to be a part of my problem, someone suggested I post here too.

----------

I have had a constant dull headache for 2 years and 4 months now. I have been seeing doctors ever since I got it, and recently it has been diagnosed as a New Daily Persistent Headache.

Symptoms
- Constant mild dull pain across entire head (tension-like, squeezing, etc)
- Intensity of pain is 3-4 out of 10
- Sensitivity to light
- Plugged ears (varies in degree)
- Pain seems "focused" over forehead
- Pain also behind eyes, nose
- Pain and soreness around jaw
- Neck muscles are tight as well
- Headache seems worse in morning
- Pain is there 24/7 and has never gone away
- Right nostil seems less open than left (no congestion at all though)
- Upset stomach/indigestion/heartburn at times, more so lately

Here is some history about it (in chronological order):
- It started suddenly approx. 1 month before graduating from college.
- Initially treated as sinus infection with nasal spray and antibiotics. Then treated as migraine with Depakote. No effect in either case.
- Diagnosed by another doctor as tension headache
- Saw neurologist, optomotrist, opthomologist who all found nothing wrong
- Dentist said I am probably clenching/grinding and made nightguard, which brought the intensity down. He also presciped Nortriptyline, which had no effect.
- Within past year have been seeing TMJ specialist who made day and night guards. They seem to help a little, but not much.
- Have being doing physical therapy once a week. He releases the neck muscles, but they don't stay released. We've also done exercises to improve movement -- range of neck movement and motion while walking went from very rigid and stiff to very relaxed with excellent range. None of this has made a dent in the headache though.
- Took a yoga/breathing/relaxation course about a month ago. So far no effect on headache from doing these exercises on a regular basis.
- Recently tried acupuncture. Noticed no effect, although it was only one session. I may go back for more sessions.
- Food allergy was suggested by a few people. I tried no dairy for a few days, but there was no effect. I am considering getting tested for all allergies just to see.

The last visit to the TMJ specialist -- actually the Craniofacial Pain Center at Tufts Dental School -- one of the doctors diagnosed it as New Daily Persistant Headache. He prescribed Indomethacin which actually made the headache worse -- more throbbling, less dull, especially when moving my head around.

I have been doing research online, and pretty much everything I read says it has an unknown cause and is resistant to treatment. This certainly seems like what I have. It also seems to be that it goes away for most people as quickly as it started, for no apparent reason, but can last from 2 years up to an indefinite amount of time.

Does anyone else have a headache like this? Have you found anything that helps it or makes it go away?

I'm really reaching a point of total frustration, as I spend more time and money to try to figure this out with little to no success. I am still young (23) and having a constant headache with no end in sight is really a rather depressing proposition.

----------

I have since stopped taking indomethacin, since it was making things worse. I just switched to an NTI-style appliance at night instead of a flat-style one. Only one night so far, and I didn't notice any difference. I'm going to give it more time of course.

A few people suggested that allergies might be playing a role in this, keeping the headache and muscle tension in place. I plan on going to an allergist within the next few weeks. Also, I plan on trying biofeedback as recommended by my doctor.

I would greatly appreciate any thoughts or advice as to what's going on here. It's very puzzling.

 
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Old 08-12-2005, 06:41 PM   #2
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Re: New Daily Persistant Headache? TMJ?

I've had the same deal, where it really will bug me for about 6 months, then take a break, and then 3, take a break, 2, take a break, you get the point. Anyway, I've had that going on for 1 1/2 years or so, it just suddenly appeared, and I had no idea what would bring it on or why, or even if that was actually possible. But then I found someone else who has the same problem. so once I found out what it was that made it a bit easier to deal with. Trying to reduce stress also helps, and finding ways to keep your mind off of it. Like my tinnitus, (ringing in the ears) it drives me nuts when I'm laying in a completely quiet room, or when I think about it. So, hopefully that helped, reduce stress, and find ways to keep your mind off of it. and just wait it out. I don't think they've really found anything for us yet

 
Old 08-12-2005, 09:35 PM   #3
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Re: New Daily Persistant Headache? TMJ?

Thanks for your response. It's encouraging to hear that there are other people in similar situations. Stress definitely does make sense, and I've always suspected that that was at least part of it. I would consider the month before graduating college pretty much the most stressful time in my life so far, which is when the headache started. Also, in general I find that my mind is always thinking about things. I often find myself thinking about how to solve problems greater than myself, and potentially driving myself crazy in the process! I've been looking for ways to stop worrying about things and just focus on the present moment more often. The yoga/breathing class taught some techniques for calming the mind, so that is definitely something I will continue to do.

 
Old 08-13-2005, 05:32 AM   #4
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Re: New Daily Persistant Headache? TMJ?

i have the same problem for the last 3 yrs and im only 20!its stopped me fropm doing what i most love-play music-first a jaw injury,then tthe jaw injury is causing neck and back problems which have given me phantom tendonitis in my left(and most used arm!I am sick of this and i think its bl888dy ridiculous that in this day and age there is no relief for this
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Old 08-13-2005, 07:25 PM   #5
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Re: New Daily Persistant Headache? TMJ?

Yeah, being 17 with this, it is rather difficult to have a life at times, and to do the things you love, like music, with the clarinet, and TMJD, they def. do not mix, but because I love it I go through the painful shots to reduce and get rid of pain (for about 6 months). And headaches and Band? but I love band. so I go through the pain. Is that horrible? I know I've missed some days because of pain, or headaches, but the teachers understand.
Sometimes you just wanna scream though. when it's dragged on so long. But that's when you gotta get out there and do something, something you love, or something that you know will help, even if it is temporary relief.

 
Old 08-27-2005, 10:12 PM   #6
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Re: New Daily Persistant Headache? TMJ?

cden, it's like you've written out my 3 year history as well. I almost did a double-take to see if I had written your post one night when I was intoxicated or something. What's oddly reminiscent is your stomach problems, which began 6 months ago for me (probably due to too much Advil).

I hope you find some solutions, because I would directly benefit. I'm finally starting a new approach--I saw a pain doctor and was given muscle relaxers... but after 3 days things have actually gotten worse.

I'd recommend staying clear of caffeine, decongestants, tobacco, or too much alcohol. Also, a consistent sleeping pattern has made the difference for me. Lastly, maybe try some sort of adventure, like a weekend hike or something. I find that being out in nature and only worrying about camp sites and my next meal will clear my headaches for the next week.

Let us know if you find any solutions!
~adam

 
Old 08-27-2005, 10:24 PM   #7
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Re: New Daily Persistant Headache? TMJ?

Adam,

I never really thought about sleep as being something that's contributing, but it certainly would make sense. I do tend to not sleep enough (not because I can't, but because I stay up too late). I tend to sleep in on the weekends and then go to bed too late on the weekdays, getting only 6-7 hours on average. I will try to get a more consistent 8-9 hours of sleep and not vary in my sleep and wake-up times. Is this what you meant as well?

Oh and I will definitely keep you updated if I figure anything out that helps!

 
Old 09-04-2005, 11:21 PM   #8
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Re: New Daily Persistant Headache? TMJ?

WOW! Sorry of I write too much, but I am rather passionate about this subject because it troubled me for over a year. I am glad to hear that I am not the only one with these symptoms! I am 20 years old, junior in college, and it seems to be some kind of epidemic that is facing our age group. I have experienced the same exact symptoms- the dull headache that you wake up with, the inability to focus, sensitivity to light, plugged ears, stuffy nose(but not really), and the really really tight neck muscles. I am glad to know that I am not the only one who experiences these problems. I have also recently had the heartburn as well. In my case, the headache is predominantly on one side of the head, my right side, so I don't know if that is the case with you.

I saw an allergist, endocronologist, ENT specialist, pediatrician, acupuncturist, neurologist, dentist, orthodontist, opthomologist, everyone! I even had my wisdom teeth removed, although I now just wonder if that was a way for the dental surgeon to make more money. I have had this problem for a year, with blurred vision which has inhibited my ability to focus at USC. My grades dropped because of this, and I have had to take a semester off. Fortunately, I have recently gotten a handle on this, and I hope that what I am doing can provide you relief as well. I have been able to reduce my headaches by 95%, and the blurred vision, ear and nose congestion is nearly gone.

I have never been diagnosed as New Daily Persistent Headache, but that is certainly a great evaluation of the symptoms. Haha! In my case, I have found that there are several causes to these problems:

1) Bruxism- grinding your teeth constantly day and night, unconsciously.
2) Clenching- day and night, unconsciously
3) Allergies
4) Diet
5) Stress
6) Unnatural Bite
7) Drugs, Preservatives, Caffeine, Sugar

First of all. Stop taking unnecessary medications!!! I took sinus medications, migraine medications, nose sprays, antibiotics, and there is no reason to force your body to take these things, WHEN THEY DON'T HELP! STOP WASTING YOUR MONEY GOING TO HUNDREDS OF DIFFERENT DOCTORS WHEN THEY CANNOT DIAGNOSE YOUR PROBLEMS!

You must make an extra effort to not move your jaw during the day. Do not swing it side to side, do not lift it up and down excessively, do not eat foods that require a lot of biting such as bagels, and chips, and definitely DO NOT BRUX OR CLENCH WHEN YOU ARE AWAKE!!! I have found that I do this unconsciously when I am stressed, nervous, overworked, etc. It is at first hard to do, especially when your whole entire head is sore, but it must be done.

Make sure that your orthodontist has fixed your bite so that it is even. In my case, I had worn a retainer at night for 4 years, and I think that during the night my body unconsciously would try to remove the retainer from my teeth, contributing to my clenching and grinding while I slept. I immediately stopped wearing the retainer, and working with my orthdontist, I have managed to make my bite more even. Part of the problem was that there was a little slide going on in my mouth. 1/10 of a millimeter can make you brux harder and slide around on your teeth. If your teeth feel like they don't fit exactly together, talk with your orthodontist or dentist. In my case, he shaved off some of the enamel from my teeth to make the bite more even. This has helped me alot.

In regards to the night guard, don't use anything that the dentist or orthodontist gives you. They gave me a night guard, to prevent me from bruxing during the night. They took impressions of my teeth, sent it to a lab, which made a little night guard which fitted onto my top teeth. IT WAS WORTHLESS AND A WASTE OF MY MONEY! I still woke up in the morning with the same headache. Furthermore, the thing didn't fit on my teeth exactly, and actually put pressure on my tooth, in which I woke up with a sore tooth! GO TO THE STORE AND BUY ONE! I bought this thing from the store for $20, which works the best. It is a big cumbersome thing that you fit to your mouth by heating it and making your own impression of your mouth. It is great because it is large and just absorbs all of the force from your jaw clenching down while you sleep. I have also found that sleeping on my back rather than my stomach helps to prevent the clenching during the night. However, I usually wake up on my stomach biting down as hard as I can. The over the counter night guard fits right between your teeth and works very well to prevent you from clenching and bruxing all night long. I would recommend using one of these larger night guards than the small ones that some delicately fit onto your teeth.


Keep doing your yoga/breathing exercises. Do not lift heavy weights because that will only make your muscles more tight. I have found that yoga and light exercises or cardio like running or swimming is the best. I lifted weights and my whole entire neck became like a rock and the headache intensified. Acupuncture probably helped me the most, and I am still working with an acupuncturist/qiqong therapist. This has been the only thing that helped me. Before I got the nightguard, and learned of the bruxing and clenching, I had reduced the headache by 75% simply by doing yoga/ Qiqong/ Tai Chi/ standing meditation/ acupuncture. IT IS IMPERATIVE THAT YOU DO THIS DAILY! If you are not hip to Chinese medicine, it is really amazing. This is the only thing that was able to provide me with relief. The yoga is great, but refrain from the head stands and things that will put pressure on your head. The yoga helped me alot to relax and release tension from my muscles. It is really a powerful way to help stress and tension which in my case was held in my head, neck, and jaw.

However, the most important thing to do is the standing meditation. This may seem boring at first, but once you get into it, you will realize how powerful it is. Just stand with you feet shoulder width apart, raise your hands in front of you, and hold them about 5" apart. Bent your knees slightly, straighten your back(so you don't have the natural curve), and concentrate on your energy(called qi or life force in Chinese Medicine). Do this for 2 minutes, and work up to 20 minutes every day. You will feel the electric current in your hands and around your body, and it is amazing how it will just move all of your headache out of your head. Just focus and imagine all of the pain in your head moving all the way down and going into the ground. I also recommend reading books on Qiqong or energy healing.

Furthermore, I had allergy problems which I think were contributing to this. I had hives, and I was given an antihistamine for 2 years. I think part of the problem was that I had been taking this drug for 2 years, and toxicity as been shown to cause anxiety, and nervousness. I later found that the hives were caused by food preservatives, and artificial sweeteners which I had totally cut from my diet. If you think that part of your problems are caused by allergies don't waste your money going to an allergist as he will probably put you on drugs for 2 years and then tell you that he can't perform a test for food preservatives. Simply do not eat preservatives and caffeine. I have removed these items from my diet, in addition to doing the other types of therapy, and my symptoms are finally going away. It is really hard not to eat preservatives, because they are in everything, but they have been shown to cause deformities in rats and their children. The FDA approved them in low dosages, but there are is still much research to be done in this field. Some preservatives include sodium benzoate, BHT, BHA, calcium disodium edta, sodium bisulfite, sodium sorbate, and benzoic acid. These are the most common. I also stopped drinking caffeine which I think can contribute to the stress to your body, the nervousness, and the bruxing and clenching. I also stopped smoking and drinking wine which I did infrequently.

These are the things that helped me. I hope they can help you as well, and hang in there, I was in the exact same position that you are in. Fortunately, I figured this out before my bank account went totally dry after paying all the doctors bills. Good luck my fellow New Daily Persistant Headache Sufferer!

 
Old 09-05-2005, 04:36 PM   #9
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Re: New Daily Persistant Headache? TMJ?

kpdaniel, thanks for the advice. The more I hear from people, the more I realize that a LOT of young people have the same problem. Everything you said makes a lot of sense, and I will try to do as many of the things you listed as I can.

Right now I am trying the migraine diet described in the book "Heal Your Headache: "The 1 2 3 Program for Taking Charge of Your Pain". This book was recommended to me by a person in the headache forum ( http://www.healthboards.com/boards/showthread.php?t=312308&page=3 ) and says a lot of the same things you said about food and medicine. Step 1 is to eliminate all quick-fix medications, as they cause rebound headaches. Step 2 is to eliminate all migraine trigger foods, such as caffeine, citrus fruits, alcohol, etc. The book says that the migrane mechanism causes most headaches, meaning that there are triggers, including stress and food, and that when these triggers go above your threshold, symptoms occur such as headache, photophobia, and a wide variety of other symptoms. Step 3 is preventative medicine, such as amitryptiline, but is not always needed.

So I've done step 1 and am in the process of doing step 2 for 2 months to see if it helps.

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Old 09-19-2005, 07:16 AM   #10
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Re: New Daily Persistant Headache? TMJ?

I could have written your EXACT same post. I too am trying to figure out what this is. my eyes water and burn 24/7 :

 
Old 09-20-2005, 12:28 AM   #11
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Re: New Daily Persistant Headache? TMJ?

why not wear a mouth guard for this? either you go to the dentist and get one made or go to wal-mart and buy one for a dollar at get the same effect. i clinch and grind my teeth at night. occasionally i get symptoms of TMJ but it doesn't usually last very long.

 
Old 09-06-2006, 12:26 PM   #12
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Re: New Daily Persistant Headache? TMJ?

Hi folks, I have the same NDPH - New Daily Persistent HEadache, 18 months, started at a very stressful time at university, very suddenly.

Had MRI scan - no probs. Also tried Acupuncture, hypnosis....no joy. HAd Epilim tablets for a while but they changed my personality and did not get rid of the constant dull pai above my left eye, and then most of the time pains abouve each eye.

arghhhhh!

I'm also off caffine, doesn't seem to make a difference.

Probably is stress related, but life has calmed down now i have a full time job. If anyone heres of a cure/reason for it going pleeeease post it here!!!!
I'mn from the UK and haven't met anyone else with the problem. I'm only 25 and its wrecking my life. I'm on pause.

What is TMJ??

Good luck folks.

Heloise.

 
Old 09-09-2006, 02:34 AM   #13
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Re: New Daily Persistant Headache? TMJ?

Anyone tried the Paul Bacho book re tension headache relief???????

p.s. alcohol makes it worse...but this morning I massaged the base of my head above the neck and it took away some of the intensity.....TRY IT!!

 
Old 09-30-2006, 08:56 AM   #14
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Re: New Daily Persistant Headache? TMJ?

Ditto.

For me, onset was COMPLETELY sudden. At age 15, a month after breaking my arm, the 10-year anniversary of one of my parents' death, my first suspension from school, and breaking a guitar string on stage, I was falling asleep- and suddenly felt l like I had been knocked, hard, in the back of my head.

Ever since then- I'm presently 19- I've been dizzy and headache-ridden. The intensity varies, but it's omnipresent. I've had an MRI and a battery of nervous-system tests. It seems like every doctor's given up on me before I've given up on him/her.

After two years of that, I turned to drugs and alcohol to remediate- or distract from- the subjective effects of the headache. The net results are higher highs and lower lows. I also have a hunch that these persistent headaches cause long-term, structural neurotoxic damage- and I'm sure my drug habit can only exacerbate this.

I'm not at my wit's end. I'm at the end of my wit's end. This headache has snatched from me my ambition, willpower, and raison d'etre. It's indescribably significant to me to hear others going through what I am.

Here's a bit of hope- adolescent-onset NDPH often disappears after 5 years. Feel relieved?

-M

 
Old 03-01-2007, 11:35 AM   #15
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Re: New Daily Persistant Headache? TMJ?

Hi. I want to follow up on Heloise's question. Has anyone tried Paul Bacho's book (I don't remember the exact title- but it is something like "Get Rid of Your Chronic Daily Heacache Permantly). I am trying to find out whether I should buy the book. Thanks! MJ

 
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