New Daily Persistent Headache Support Group

Hi everybody,

I have a question which I thought would best be asked here, simply because this seems to be the place with the most people who are aware of NDPH.

My daughter (Jess, now aged 17 1/2) has been suffering with NDPH since Jan 12 2011. Almost 18 months of hell.

As with many of you, this has totally devastated her life, no school since that day and her friends have mostly disappeared now

We are still no nearer to finding a "solution" (as with most of you it seems) and are almost at the point where the neurologist is telling us she just has to accept this life, and deal with it as best she can. How awful for a 17 year old to be told this..

She has been though just about every single drug/treatment that most of you have no doubt also tried at some point or another, as well as botox injections and nerve block injections, DHE of course, steroids, etc etc, all to no avail.

She is currently whimpering in pain in the room next to me as she has an awful head cold (and has been coughing, chest infection too) and the oxycodone that she takes 5 times during the day seems to be less effective during this cold (any who knows, maybe the antibiotics are just making it worse..)

I occasionally see "success stories", "my NDPH has gone" etc but there's seems to be no coordinated way to record these, perhaps with correlating (or at least categorising) which different treatments are benficial or not.

Maybe the medical word has such a "database", but all I ever see are occasional names of doctors who are "aware" of NDPH, have a name in the area and perhaps have some favorite treatments that help etc but this is hardly scientific.. Not all neurologists we have met are even aware of NDPH it seems (in the UK..)

So, I am wondering if there is any point in making a website for NDPH, recording people's stories, what treatments they have had and which, if any, helped?

If I was going to criticise this, I would also say this is also not scientific, but surely we could get some doctors on board to advise on what information should be recorded so at least theres some chance of the data being useful? (some doctors have posted here, I remember Dr. Singer's article, for example)

Comments/opinions?

Thanks, Kevin

I think it would be great to do this for our benefit, but due to it not being corroborated/verified, I don't think it would be of much help to the doctors. As far as I know there are some doctors doing some small NDPH treatment studies (as well as trying to pinpoint what causes it). I think from what we know so far there isn't any consistency in patient's responses to treatments. Some of these doctors who treat NDPH patients do communicate with each other.

You are right that this diagnosis is not recognized everywhere. It is a new subset of Chronic Daily Headache, only recognized in the last 10 years or so. Even if a doctor knows of it, they may not think of it too different than CDH as the current treatment is much the same. The main differences are the onset of NDPH and that it is more stubborn. I do think the data differs for NDPH than CDH and chronic migraine as we are less likely to respond to treatments.

As for your daughter, I would think there are some meds they haven't tried. A lot of them take 3 months, so at 18 months, how many preventatives could she really have tried? I would push to find a doctor who won't give up. Although I believe in being accepting of the new reality, as I think that helps the patient cope, I don't think there is ever a true end of the road with treatments. There are always similar meds to try, treatments to be combined, alternative treatments, etc.

You nay want to consider a surgical option for her such as a nerve stim (Reed procedure) or decompression surgery (Dr. Perry/Blake or Dudic). Since she is already on daily pain meds, these can be optimized by increasing the dose if needed and moving to a long acting med. With the short acting Percocet, there is a lot of ups & downs in the relief. A long acting med would be taken less often and have a more stable level in the system. Short acting meds are designed to be taken daily, only as needed.

I also resorted to pain meds (about 3-4 years into my journey; now at 6.5 years). I've also continued other treatments to some effect. There are some varied opinions on opiates...most are against them, citing rebound, increased sensitivity to pain, hyperalgesia, and preventatives not working while on them. Not sure if I agree with that, but I do think that daily pain meds should be more of a last resort. Is she seeing a pain specialist, or is her neuro or family doctor prescribing them?

A pain specialist will be best suited for prescribing them and may even have more treatment ideas, as a good one also recommends various injections, surgical treatments, adjunct meds (similar to preventatives a neuro prescribes), and alternative treatments. I also get a very big exacerbation in my head pain with a sinus infection or cold. One of the pros of being on a long acting pain med is typically a short acting pain med is used with it, for breakthrough pain. The long acting med covers a percent of the baseline pain (50% is a good goal), and then you take the short acting med with pain spikes.

So I'll end up taking a lot more meds with a cold or sinus infection. That way you can also try to get ahead of the pain better. With her age opiate tolerance is going to be a huge problem. It will require a lot of dose escalation. Honestly, she probably will never get the same relief she may have got in the very beginning of taking the pain meds.

Its been a huge battle for me as I started taking the short acting meds a few days a week from nearly the beginning of my headache. Now I am on very high doses, am not getting very good relief, and the doctors don't know too much else what to do as they aren't comfortable with escalating the dose too much more. Although there is not a dose ceiling with the meds, at some point the side effects get to the point you can't go any higher (sometimes dangerous ones such as sedation and breathing problems).

Therefore they have their limits as there has to be somewhere to go in the future. I also get days that no amount of pain meds will touch the pain. I hope your daughter finds some relief soon. How much do the pain meds help on a typical day? Age is on her side. It seems that younger patients have a better chance of remission. Have they tried something more aggressive such as admitting her to the hospital to try IV meds? lot of us don't get that opportunity though. Hang in there! I know it must be heart breaking to see your daughter like this. Best wishes.

Hi sachs650 I am so sorry to hear of your daughter's relentless pain. It is so hard to watch our kids suffer so much!

Kate had a lot of good points in her post. There are lots of treatment options out there. It is a lot of trial and error, and finding a good neurologist who is a headache specialist, and/or a pain management specialist is crucial. Others have gotten relief from seeing a Lyme specialist.

My daughter was almost 15 when she woke up with her headache (a little over 4 years ago). She has settled on a medication that is very, very slowly helping her. For her, the ticket is Sibelium. AC now even has times during the day where she is actually headache free. As you can imagine, starting to have breaks from this 24/7 headache is a miracle in and of itself.

Please do not give up hope!