New Daily Persistent Headache Support Group

Hi everyone,

It's nice to have found a group of people who knows exactly what I'm going through. I haven't met anyone else with this condition or that realizes that something like it even exists.

My headache started on January 6, 2011. I haven't officially been diagnosed with NDPH (I don't think my neuro is very familiar with it), but from the research that I've done I think that is what it is. In December 2010 I had what I thought was a really bad cold, turns out it was a sinus infection. It cleared up and I felt fine, and then suddenly I woke up with a headache that has never gone away.

I've tried countless medications that have not had any effect and every test or scan has come up normal. I've seen two neurologists, a headache specialist (though only saw her once), a naturopathic doctor, and a chiropractor, all with no success. I have most recently tried botox which didn't help, and I just finished an "elimination" diet where I cut out every possible headache triggering food to see if it was diet related (gluten, soy, dairy, most meats, certain fruits and vegetables, sugar, anything processed). The diet ended up doing more harm than good as my headache has been much worse than its normal range of 3-5 and I'm anxiously hoping it will go back down now that I have stopped the diet.

I have an appointment on Tuesday to try botox again. If that doesn't work, I don't know what else there is left to do.

I live in Seattle (new to the area), so if anyone knows of a good doctor I would be greatly appreciative. My insurance will only let me see their own doctors, but if there is a specialist out there that might be able to help, then I will fight to be able to see them. I'm anxious to peruse this site more and participate.

Personally, I'm female and 27, and I work in higher education. I have the greatest family and boyfriend that have been nothing but supportive throughout this whole ordeal.

Welcome! I am also in the Seattle area. It is good you have tried this much so far. It can take a lot of trial and error to find something to help knock the pain down some. Mine also started with a sinus infection; I was 19 and in college (now 26). Unfortunately the best NDPH doctor in the area just retired (Dr. Singer). The next best are probably the big name headache clinics at Univ WA, Swedish, etc. I prefer the individual attention of a private practice though...often the big name places have a long wait time and may not even see you on a continuing basis. However, I have not been to any other headache specialist in the area besides Dr. Singer as I did a lot of that in AZ before I moved to WA. Since being here I've basically been under the care of my primary doctor, and more recently, a pain specialist.

It can take 3 rounds of botox 3 months apart to see a result, but I don't think any certain treatment has better luck than another. I'd keep working with the headache specialist and try treatments; as soon as one has been given enough time (often the meds need 3 months), try another one. The alternative stuff is also a good idea...I think the most likely to help and least likely to cause harm are physical and massage therapy.

A lot of doctors don't recognize NDPH as it is a newer diagnosis. Many still would call it Chronic Daily Headache, even though NDPH is actually a type of NDPH. Although having a diagnosis is important as far as an "answer" (although we still don't know the cause/s of NDPH), the treatment is much the same as CDH and any other headache condition. The main difference is that NDPH is known to be more stubborn. There are always more treatments to try. Many are similar to others or more off the wall / dangerous.

Looking forward to seeing you around here more. I definitely know what you mean about folks who know exactly what you are going through. I have a very supportive hubby but he'll never really get it. Chronic pain in the head to me seems worse than any other type as it affects your concentration; I literally can't think straight much of the time. Hang in there! It gets better. It may still subside on its own, you will learn to cope, and most folks eventually find something to help the pain some. Best wishes.

Yeah, my neurologist just calls it Chronic Daily Tension Headache.

The specialist that I saw was at Swedish and I wasn't living here at the time. It was more of a consultation and she determined that there wasn't much more she could do for me that my home neurologist wasn't already doing. I only saw her three months into the headache so that might have attributed to her skepticism. I just started seeing my current neurologist in January after I moved and she was the first to suggest botox so I'll see what else she wants to try after that. The first round of botox didn't provide any relief and I found the process itself very painful, but I'm willing to try it again even just to rule it out.

I was also diagnosed with a sinus infection shortly before my headache started in Oct 2009. My neuro put me on amitriptyline and topamax within the first 6 months and after 1 year I added doxycycline and singulair to the mix. Doxy and singulair are Dr Todd Rozen's protocol and are used for there anti-inflammatory properties. The combo had a significant effect on my overall health as I used to feel like I was suffering from CFS. It also helped my headache, keeping it around 2-3/10 most days with the occasional menstrual related flare up.

Immunosuppression is a well documented treatment for NDPH, and Dr Todd Rozen's protocol and steroids such as oral prednisolone and IV methylprednisolone fall into this category. Both are effective on my headache, but unfortunately steriods can not be used long term because of serious side effects such as osteoporosis. I now also suffer from severe menstrual migraine and so need to find a medication that can help it. I will be trialing tamoxifen during this cycle to see if it helps.

What level is your daily headache or does it constantly fluctuate? Maybe it is worth giving immunosuppression a go? Best wishes.

Hi and welcome!

It does sound like you NDPH, but most doctors use Chronic Daily Headache as the main diagnosis. The main difference is sudden onset and NDPH is more likely to be 24/7 pain. NDPH is also harder to treat.

It sounds like you have made some progress trying out some treatments. Botox is a good option, but it doesn't work for most of us. The elimination diets rarely work (they work better for migraine) but it is worth trying.

Your post doesn't mention which preventatives you've tried. There are a lot of meds out there and it takes years to work through them all, so don't give up hope. There is still lots for you to try. Things that people normally start out on are steroids, topamax, amitryptiline or depakote. There are lots and lots of other though. Have you tried any triptans yet? Some people find they give temporary relief from pain spikes.

It's great to hear you have a supportive partner. It really does make all the difference!

Please feel free to ask any questions you have, everyone is happy to help.

Thank you for all of the suggestions! I'm going to look into Dr. Rozen and bring up some of those treatment ideas with my doctor tomorrow. On a normal day, my headache is usually about 3-4. It is generally lower in the morning when I first wake up and builds throughout the day. After I started week two of the elimination diet though, my headache spiked to a constant 7-8 and hasn't gone below a 5 since (that was a week ago).

I have tried topamax, amitryptiline, and depakote. I only noticed any actual change with topamax where it seemed like there were longer intervals of time between my bad days.

I tried Imitrex once at the ER through an injection, but I had a bad reaction to it and it didn't relieve the headache. I've also tried Maxalt which did nothing.

My chiropractor recommended that I see a TMJ specialist because I have that and I clench my teeth when I sleep. I recently started wearing a night guard but haven't noticed any difference with the headache.

So were there no other changes besides the diet? Even a change awhile back could have taken awhile to kick in. Otherwise, maybe something in your typical diet was somehow keeping your pain down. I've heard of certain foods fighting inflammation. Or, did you give up caffeine or sugar? I've heard the withdrawals from those can last for weeks for some sensitive folks. Many of us have sensitivities to meds, foods, the environment, etc, we developed shortly before or after the headache.

There are more Triptans to try but most of us don't respond to them. Analgesics in general seem pretty hit or miss (even narcotics). I think TMJ can exacerbate NDPH, but I'm not convined that it can present as a sudden onset daily headache...I think you'd see some build up (plus it would be worse right when you wake up due to clenching during the night). Some claim to be cured by a mouthguard (among other things), but its not in the majority to find something like this, and I wonder if some of the folks had CDH, not NDPH (ie. not sudden onset).

Has the chiro helped? I've tried it in the past and it caused me pain with each adjustment. I kept going as the practitioner kept saying they could cure me. I've since learned that chiro can be dangerous (some folks end up with permanent injury) so its not something I'd recommend. I'd proceed with caution. Over the years I've learned to run away from practitioners who claim they can cure you...what you want to hear is that they will try to help your pain.

There are more meds to try, but those are three good ones to start. Make sure your doctor kept you on them long enough...many of these take 3 months after tapering up. I imagine you're in a bit of a waiting game on the round of Botox you have tomorrow, but after that, I hope your doctor has a treatment in mind. Best wishes.

No other changes except the diet. The diet also wreaked havoc on my stomach and I've developed severe nausea and heartburn. I've actually had some bouts of nausea for a few months now, but nothing as bad as this. So I think that this combined with the increased headache are all due to the diet. I wasn't a caffeine drinker to begin with and didn't eat a large amount of sugar either. I didn't eat anything weird on the diet- chicken, salmon, quinoa, brown rice, veggies, fruit, etc. Stuff that was all part of my normal diet to begin with. I'm going to make an appointment with my primary to discuss these issues.

I've had the TMJ for years, way before the headache. It has never been that much of a bother to me, but the clenching is new (post-headache). I don't think it is related to the headache, but I'll probably at least have a longer conversation about it with my regular dentist at my next cleaning.

The chiropractor didn't help at all. I arranged to do a standard 12-session course of treatment, but on session 11 he told me that the headache wasn't anything he could fix and that I didn't need to come in for #12.

For the headache, I've also tried Toradol (injected), Butalbit, Diamox, and Nadolol. I've never been kept on a med as long as 3 months. I'd be willing to try a few again for longer, particularly Topamax, because none of the meds caused any extreme negative side effects for me. There were some that made me feel stupid where I couldn't come up with words in conversation (I think that was the Topamax), but there's no way I can continue with my head at this level everyday. I'll bring it up with the neuro tomorrow.

I've also tried acupuncture and massage therapy to no avail. I was really hoping massage would do something because I wouldn't have minded at all having to get those consistently.

Since NDPH can stem from a sinus infection, has anyone had any relief treating the sinuses? I've been thinking about setting up an appointment with an ENT because I've been having intermittent ear problems anyway (I know, I'm a mess), so I figured I could at least mention the headache and the sinus infection and see what they say. The naturopathic doctor that I saw was convinced it had to do with my sinuses, but his method of treatment involved shoving balloons up my nose and inflating them. To this day, the most painful thing I've ever experienced.

I feel like I'm blabbing on, but it is really nice to put everything into words. I'm hoping that the appointment goes well tomorrow. I feel like I'm armed with a lot of new knowledge since joining this group. Thank you everyone for listening, and have a good night!

Well at least they told you instead of stringing you along and that it didn't seem to cause damage. Another thing to check off the list. Sometimes it tough to know whether things are completely eliminated or not (such as dietary). That is quite a strange response to the diet. I'm sure a nutrition expert could compare that diet to your typical one and come up for some scientific explanation, but I sure don't know. I can give you a personal story for me though.

I have bacterial overgrowth in my small intestine I've been battling for awhile on top of the constipation. I had always been told a high fiber diet was the way to go (whole grains), in addition to the healthy fruits & veggies. Turns out that was causing me way more stomach problems then I get on a low fiber & fructose diet.

I took whole grains completely out of my diet. Its actually very tough to find simple carbs in products like cereal nowadays. Also cut out Splenda and replaced it with aspartame or stevia. Who would have thought that one? Since hubby is diabetic over the years I had just started using a lot of stuff with Splenda so we wouldn't buy two of stuff. I also limit fibers to one serving of nuts a day, one serving of fruit a day, and a few servings of lower fiber veggies. The nausea, cramps, and bloating have been cut by probably 70%. Not too bad of a diet to follow, even with my self imposed restrictions from being a picky eater (basically vegetarian and there are a lot of veggies I actually don't like).

Thank goodness my doctor told me about this. We had been battling it with antibiotics but the symptoms kept coming back. I was getting disabling attacks of it at times. She recommended a book called the IBS Solution. It has a very stringent diet plan. From that I figured out what could actually be doable for me and it has turned out to be very helpful. Thought I'd give this as an example of how sometimes diet can make a huge difference. There is one person who was recently writing it helped her daughter's headache a lot, but before that I hadn't heard of too much success with the headache (just other health stuff).

Definitely ask your doctor/s about the length of time for trying meds. I know for sure that ones like Topamax should be tried that long (but of course not a pain med, and I think beta blockers are a shorter trial such as 1 month). Too often I here of someone a year into their headache who says they have tried 10 preventatives...makes your wonder what their doctor is thinking! Even if they started two at once (which is a no no if you want to know what is helping/hurting), that still doesn't work for most of these.

It seems like very few have got help from the sinuses even if their headache started with a sinus infection (like mine). For true NDPH, causes like this would be ruled out; the actual cause is unknown, but its thought the illness or whatever trigger changes something in the brain that causes the pain switch to be stuck on (what I think is a good way to describe it). I do think it is good to see at least one sinus specialist like an ENT though. Especially at the beginning of the headache is common to have these weird symptoms that may or may not be related to the headache. Sometimes they subside, are an indication that the headache is part of a bigger medical problem, are a sign of a secondary medical problem, etc.

They can do some imaging, exam, history, and give you a pretty quick opinion. Keep in mind they will often recommend surgery to see if it would help. If so, please get multple opinions as to if that is the best route. Sometimes surgery can actually make the headache worse or add new sinus problems. I have nasal problems on top of my NDPH (non allergic rhinitis) and my ENT suggested something surgical to help, but I just don't see that as a good idea for what to me are annoying symptoms (as both me and the doctors don't think mine is from my sinuses).

The balloon inflation treatment sounds like torture! What was that supposed to accomplish? My goodness. A neti pot is one of those random things you can try for the headache/sinuses/ears. I think you need to be sure to use distilled water though (but don't need fancy salt). Sometimes I get sinus pain with my headache and I'll take Sudafed (the behind the pharmacy counter kind) and it'll help some. I do limit it to a couple days a week as you can get rebound headache from that, similar to analgesics.

I hope your doctor can work with you better on the treatments. Sounds like you have a lot left to try and that some were stopped prematurely. With meds such as Topamax, take dose increases as slowly as you need. Often doctors push for too quick of a titration, with which you are more likely to have side effects that make you want to stop the med. Try to keep a log of the pain and only do one treatment at a time to get an idea of what could he helping (or hurting). My pain varies a lot day to day and even hour to hour, so I almost do better saying one week was better or worse than the week before (or wha I feel "normal" is). Best wishes.

It's worth investigating the ENT angle further. It probably isn't the cause of the headache but there are group members who have had sinus involvement and have benefitted from sinus surgery. Lots haven't as well, so it can go both ways. It's always worth checking out though.

Re the meds, particularly topamax you normally need to give a good 3 month trial of on a therapeutic dose (150 mg/day is fairly typical) so if you didn't do that then don't rule it out as not working. Amytriptiline and depakote can also take awhile to work so a couple of weeks won't tell you either way whether something has worked or not.

There are lots of antidepressants that are used for headache management such as effexor. Several calcium channel blockers are useful too. Isoptin is one many people try. Meds for neuropathic pain like cymbalta and lyrica and neurontin are also useful for many people. It might be worth looking into some of these to discuss with your doctors.

We are happy to answer any questions you have and there are lots of good posts around on meds that have helped people.