After years of nearly constant headaches, the Mayo Clinic has diagnosed me with a condition known as New Daily Persistent Headaches. Does soneone know anything about this condition or where I could learn more about it and its treatment? Thanks.

I don't know anything about Daily Persistent Headaches, but just the title to me sounds like you KNOW you have daily persistent headaches... why do you need someone to tell you that? What you need them to tell you is WHY you have them... what causes the daily persistent headaches? Have they given you any indication of that? It's like someone going into the doctor's and saying "I have a sore back" and the doctor diagnosing them with "Sore Back Disorder". What's the point?

One question though - have you ever been to a TMJ Specialist to be screened for TMJ Disorder? You would have had (at a minimum) some imaging of your jaw joint... tomographs, CT scan, or MRI. Have you had this done, by a jaw joint (TMJ) specialist? TMJ disorder often causes daily headaches, and is also very often misdiagnosed for years with some people who don't have all the other more obvious symptoms.

Just a thought...

Melanie

Melanie, thanks for your response. Perhaps I should have been clearer in my post. New Daily Persistent Headaches is (apparently) a new type of headache – like migraine, tension, cluster, etc.

To the best of my knowledge there is no cause for these headaches. I have had multiple MRI’s, a CAT scan, lumbar punctures, an epidural blood patch, visits to chiropractor, pain management experts, a brain tumor removed and have been on countless different drugs to help manage the pain. I have yet to stoop to acupuncture, but hey that may be worth a try. However, I have not seen anyone about TMJ and I appreciate your suggestion to have this checked out. The only reason I have been given for headaches is that they must be “genetic.”

I have been able to find little information about this new type of headache (i.e., New Daily Persistent Headaches) and am hopeful that I can find something out there.

Thanks again for your response.

Bob

Well, if they can't find a cause other than "it must be genetic" then I'd say go see a TMJ Specialist and get screened. I mean really, it's worth a try even if it's a long shot, since you've never seen a jaw specialist yet. Anyway I have TMJ Disorder and had headaches that would last weeks at a time, never go away, extremely severe, etc. starting at about age 15. I saw doctor after doctor and had a zillion tests and the best they could come up with was headaches due to eye strain. Gimme a break.

Anyway, one day when I was about 20 or so (after 5 years of unexplained headaches), my jaw locked shut. Just woke up one morning and my jaw was locked closed. That's when I realized that I obviously had a jaw problem, started seeing jaw specialists, doing research, etc. and now it's obvious that my headaches are due to my TMJ Disorder. I've got them down to a science... I get a little stiffness in my neck as a warning sign, and within an hour I have a headache. I've done different types of splint therapy (plastic oral appliance) combined with physio, chiro, massage, etc. and now my headaches are not as severe. I had one over the weekend that lasted three days, but I usually get a couple weeks in between where it's not too bad. I still wake up with my jaw locked shut every morning though.

Anyway, I do know some people who had a harder time finding out it was TMJ Disorder that caused their headaches, because if your jaw isn't locking or popping or doing something obvious, it most often can mask itself as the root of headaches. I know of several people who don't have the locking in the jaw but do have severe headaches that took years and years to finally diagnose as jaw related. Most are shocked to realize this, because it doesn't make sense at first that if your jaw feels fine how is it causing all these problems? Well it really just comes down to connectivity. The muscles in your jaw are connected to the muscles that cover your skull. Abnormalities in one leads to pain in the other.

Anyway, if I were you I'd get screened. What have you got to lose? My advise is to go to your dentist and ask for a referral to a TMJ Specialist. Your dentist will be the most knowledgeable on who's the best TMJ doctor in your area.

Good Luck!
Melanie

MelanieB - I've had chronic "daily" headache for years now, seen many doctors, and no relief. I've seen a TMJ specialist already, tried the NTI device and some injections into my jaw, but no help. I still think my chronic headaches may be due to TMJD, since symptoms began after having my wisdom teeth removed. I see your in Canada, and I assume you don't have any recommendations for a TMJ specialist to see in the Michigan area?

Originally posted by MelanieB:
Well, if they can't find a cause other than "it must be genetic" then I'd say go see a TMJ Specialist and get screened. I mean really, it's worth a try even if it's a long shot, since you've never seen a jaw specialist yet. Anyway I have TMJ Disorder and had headaches that would last weeks at a time, never go away, extremely severe, etc. starting at about age 15. I saw doctor after doctor and had a zillion tests and the best they could come up with was headaches due to eye strain. Gimme a break.

Anyway, one day when I was about 20 or so (after 5 years of unexplained headaches), my jaw locked shut. Just woke up one morning and my jaw was locked closed. That's when I realized that I obviously had a jaw problem, started seeing jaw specialists, doing research, etc. and now it's obvious that my headaches are due to my TMJ Disorder. I've got them down to a science... I get a little stiffness in my neck as a warning sign, and within an hour I have a headache. I've done different types of splint therapy (plastic oral appliance) combined with physio, chiro, massage, etc. and now my headaches are not as severe. I had one over the weekend that lasted three days, but I usually get a couple weeks in between where it's not too bad. I still wake up with my jaw locked shut every morning though.

Anyway, I do know some people who had a harder time finding out it was TMJ Disorder that caused their headaches, because if your jaw isn't locking or popping or doing something obvious, it most often can mask itself as the root of headaches. I know of several people who don't have the locking in the jaw but do have severe headaches that took years and years to finally diagnose as jaw related. Most are shocked to realize this, because it doesn't make sense at first that if your jaw feels fine how is it causing all these problems? Well it really just comes down to connectivity. The muscles in your jaw are connected to the muscles that cover your skull. Abnormalities in one leads to pain in the other.

Anyway, if I were you I'd get screened. What have you got to lose? My advise is to go to your dentist and ask for a referral to a TMJ Specialist. Your dentist will be the most knowledgeable on who's the best TMJ doctor in your area.

Good Luck!
Melanie

mbr22 - Sorry, I really don't have any suggestions for a specialist in Michigan! You could try posting on the TMJ Disorder board... I know there are a lot of others there that may know of specialists in your area.

Good luck!
Melanie

PS: If your headaches are due to internal derrangement (displaced meniscus in the jaw joint) then the NTI and/or jaw injections will not help. The NTI is good if your headaches are due to severe bruxism (clenching and grinding your teeth) and the injections may help to relax tense muscles, but if your meniscus is displaced then neither will put it back where it belongs. Have you ever had any imaging done of your jaw joint? Tomographs, CT Scan, or MRI? Imaging of the joint (not just of the head!) can confirm or rule out internal derrangement.

Hi MelanieB --

I've seen many of your posts on the TMJ board. I've had the daily tension/sinus headaches and have been diagnosed with both displaced disks. I have not had an MRI. The docs looked at my xray and did an evaluation. Would you recommend an MRI? I'll ask them at my visit tomorrow -- they are a very good TMJ clinic.

Also, what did you find helps with the headaches. I'm wearing a splint 24/7 which helps with facial pain but the headaches continue. I do chiro, massage 1x month, have my husband massage daily. What are chances of recapture?

Joan

Hi Joan. I've never had an MRI either. A lot of doctors will use tomography instead or as a first look, to determine if the huge expense (and wait) for an MRI is necessary. Tomographs are a special kind of X-ray that looks at your joint in "slices" or cross sections. It's as if you could take the joint space and slice it into several cross sections, from the outside (cheek) inward into your head, like a loaf of bread, and see what's going on in each section. It gives three dimensional data on a two dimensional sheet. Anyway, if the x-rays you mentioned were tomographs, then that's good, but if they are just going by regular x-rays or that panoramic (around your head) x-ray that dentists use, then I'd say that's not quite good enough.

Also, if they do tomographs and then realize by looking at them that they are still unsure of something, then better imaging is probably warranted. Either a CT Scan or MRI might be necessary, CT being less expensive, MRI being the best but the most expensive. But if your doctor hasn't suggested better imaging, then I would assume (if he's a good TMJ doctor) that he's getting enough info from the tomographs and doesn't see the extra $$ for an MRI as being warranted.

Ok so about that splint. How long have you been wearing it 24/7? And have you ever had any imaging done with the splint in your mouth? Sometimes when a splint has been worn for a while (month or two) and there has been no improvement, or if a splint has improved one thing but not another (like with you), then the doctor may want to have imaging done (tomography, CT, or MRI) of you with the splint in your mouth and also with it not in your mouth. That way they can see exactly what impact the splint has on your joint space. So they can see what it's changing that has decreased your facial pain, and also what it is failing to change which has caused your headaches to remain. Make sense? Maybe ask your TMJ doctor about this, see what he thinks. It might be a case of them not quite finding the right splint for you. There are literally hundreds of splints. But most are based on one of only a few "theories" of how the splint should realign things. I know that for me personally, the most accepted theory (centric relation theory, or centric positioning) DOES NOT WORK for me and puts me in a closed lock. So the imaging of your joint with the splint in may be a good tool to determine if the theory behind your splint is appropriate for you. It's kinda like trial and error, which is unfortunate, but sometimes they don't know if something will work until they just try it.

Me, I've tried and ditched three splints now and am on my fourth. I'm ready to ditch #4 as well, but do have a plan for #5. Each of these splints worked on a different theory and has caused different things about my TMJ symptoms to change. One did nothing. Another worked perfectly but then I relapsed (it wasn't permanent). Another was sheer torture and put me in a closed lock with 6 months of one big excruciating headache, face ache, neck pain, etc. And now the latest has helped my headaches tremendously but I'm still having chronic locking. So you can see that there are lots of different splints that work differently for different people!

I'm also on Vioxx, which is an anti-inflamatory based drug (like Ibuprofen, Advil) that I take first thing every morning. It has really helped my headaches. If you don't want to take daily meds, you can try Ibuprofen, maybe ask your doctor for prescription strength. Theres a pain killer called Novaprofen that works well. It's better to get a prescription strength pain killer than to just take lots of over-the-counter. REally, taking one Novaprofen has the same amount of the active drug as taking four Advils. But it's safer to take the one Novaprofen because it has less fillers and other things.

Anyway. Sorry to babble on and on! http://www.healthboards.com/ubb/gabby.gif
I hope I answered your questions.
Melanie

[This message has been edited by MelanieB (edited 01-29-2002).]

MelanieB - I know I've had CT Scans of the head and sinuses, and a panoramic x-ray of jaw, but I don't believe I've had tomographs and for sure no MRI.

Have you tried/familiar with prolotherapy, or radio frequency treatments? My 24/7 headache is killing me! I'm all for trying anything (except invasive surgery) if nothing else but to keep ruling out different treatments until something works.

thanks for your advice!

mbr22, if the scans you had were of your sinuses, then they may not be the best to diagnose your jaw. Have you seen the images? If there is a clear view from the side, of the joint, then they'd be good. Otherwise, I'd say no. I'm not an expert on imaging though... maybe ask your doctor.

I've never tried prolotherapy or radio frequency treatments (never even heard of the latter). Prolo is on my list of things I'll try before surgery though. If nothing else works I'll get to it eventually. What the heck, I've got nothing to lose.

Melanie

JUST WANTED TO LET YOU KNOW THAT I HAVE HAD ALL THE TEST AND THE DOCTORS CAN'T FIND ANYTHING WRONG WITH ME. BUT YET I HAVE HAD HEADACHES 4OR5 TIMES A DAY EVERYDAY SINCE I WAS 12 YEARS OLD. I WISH I KNEW THE REASON FOR MY HEADACHES.

[This message has been edited by moderator1 (edited 10-14-2002).]

I have had migraines for about 12 years. Early headaches were about one each month and graduated to 4 and more a month - some lasting 3 days. Medications included over-the-counter to Imitrex injection. One painful headache day I asked for help on the internet. A lady from Georgia answered that 2X a day taking St. John Wort, Feverfew and Ginko helped her. She suggested taking the herbs at 7am and at 7pm. I did this for about 10 days and then tapered off to taking them once a day. I do not have that type of migraine anymore. I quit taking the herbs after about a month. The headaches were awful - I was sick to my stomach and driving was impossible as tunnel vision and dialation of my pupils made any light painful.

Still have a few headaches - some I blame on barometric pressure changes and a TMJ problem. TMJ specialist/surgeon fit me with an appliance that keeps me from clenching my jaw while sleeping. I periodically go back on the herbs. Hope this is of some help.

------------------

Just a suggestion, but you may want to consider talking to your MD about a prescription medication called Amitriptyline. It used to be used as an anti-depressant, but is now more commonly used to treat migraine headaches.

This was given to me by a specialist to try because I have daily wooziness, which is accompanied in some form with a headache. The doctor thought I might be having Migraine Vertigo headaches, which are migraine headaches but with some form of dizziness being the main factor.

Anyway, I took one-half of a 25 mg pill at dinner time, and within three days my wooziness and headache completely disappeared. I didn't have one headache (not even a TEENY one) the whole time I was on the medication.

I stopped taking the medication because the side effects (for me) was a racing heart beat (a common side effect) and the feeling that my tongue was swollen. After three months, the headaches and wooziness came back.

But I hope this helps. As for herbs, I would never try them (or any medication suggestion) without the advice of a doctor first. I hope this helps you in your quest to feel better.

Take care.

Bob i have a headache almost every day, I'm afraid to say anything because everyone get tried of hearing it,I even drive myself to the er because i'm afraid to tell someone how bad it is. you feel the same way? i'm can't take one more person saying to me , you always hurt.
(i had acupuncture it dosen't hurt.) but sometime if you take to many meds i sure we tried everything you can get a rebound headache

dotstrer42, I'm in the same situation you're in. How long have you had daily headaches and what things have you tried to alleviate them?

Doug

Daily headaches can suggest a syndrome caused by frequently taking painkillers. If this is the case, speak with your doctor about coming off the painkillers. (you may not even have realised that they were a problem). Many people have mentioned the jew issue, and it is a valid one. Relaxation techniques are extremely beneficial in helping to prevent forms of tension headache and migraine. St. john's Wort and anti-depressants work in similar ways, and are a form of treatment (prevention, really) worth discussing with your doctor.My thoughts are with all of yu who suffer from the debilitating condition of recurring headaches, whatever the cause. Best of luck to you all.

When I was younger I would get a headache every afternoon and I just stumbled upon a trick that worked for me and for several other people that I have suggested it to, it may be worth a try...at the onset of the headache take to 'anacin' and drink a coke. Don't just sip the coke you have to do it quickly (well don't do it so quick you barf)heheh but as quick as possible. Something about the caffiene opens up your blood vessels and helps????? I know it is weird --but you might give it a try....let me know if it works?

I don't know whether you have noticed, but caffeine is in a lot of meds specifically for headaches and migraines?

I agree with the last poster too, that taking to many pain meds can actually give you a headache. A common side effect of headache meds is that they produce a headache.

Anyway, feverfew is a very well know and natural remedy that can be taken for migraines. You must take it on a daily basis so that it has a chance to build up in your system.

Also, acupuncture is extremely good and effective for headaches and migraines.

I suffered with migraines for years but a few years ago started haveing a headache, not a full blown migraine, everday. My doctor put me on Atenolol which is usually given to people with high blood pressure. It slows down your heartrate. It takes about 4 days to get into your system when you start. My daily headaches went away and I am so glad. I still have migraines but luckily found a medicine that works for that too. Ask your doctor if you could try this and see if it helps, it worked for me.

Hi,

I have had a constant headache for years now since I was about 15 or 16 years old...I just found out about a year ago it was related to TMJ, you may want to get your tmj joints check out, years ago I never had the pain in my jaw like I do now, or the other signs of tmj.. thats why I thought it couldnt be tmj and all the doctors I saw wanted to say it was something else, and I believe them!! only to find out years later it wasnt what that claim it was...They didnt know what was wrong so they just thought of something that would fit..

Good luck and I hope you can find the real problem to your headaches everyday..If that is not what it really is...I hope you can be cure...it is stressful to have a headache 24-7 http://www.healthboards.com/ubb/frown.gif believe me I understand..

Starr

Hi,
I'm 17 and a college freshmen. I've had a headache all day everyday for a year and a half. After going to several doctors I found out that I have the same thing you are describing (a New Daily Persistant Headache). TMJ is not related to this headache. I know this because I have TMJ and it does not make a difference as I am taking arthritis medications to supress that. I had to go thru three neurologists before finding one that knew what I had. He is one of the sixteen doctors studying this form of headache. His name is Dr. Winner if you want to know. The drugs I am on now for the headache happen to be my arthritis medication as well, called Zanaflex. I suggest you do some research and find a well known neurologist. The guy I am going to is practically famous among physicians, at least the ones that I have spoken with. Some of the things he told me is that:
1. This type of headache has no "cure."
2. Most medications will not get rid of all of the pain (which they don't, unfortunately).
3. Some people have them from 2-5 years and some have them from 20-30 years.
4. They don't know why they are caused, what triggers them, or what makes them go away (if anything).
5. He also said that so many percent of people will experience depression with this headache because it lowers your saritonin (sp?) level, so watch out for that.

The information sounds terribly bad, but either way I hope everything works out for you. --Laura

[This message has been edited by moderator1 (edited 10-14-2002).]