I need help. My 16 year old daughter has had a headache now for 85 days. It moves around her head at random, sometimes staying put in one place for several hours, other times darting about quite rapidly; sometimes extremely intense for up to several hours at a time. Sometimes quite bad for a few days without respite. She says that at times it feels as though there is something inside her head that is trying to get out. It throbs at her temples or she has a feeling of great pressure against her skull and has described the feeling of someone sticking pins into the backs of her eyes. It might settle to one area of her head for several hours or a day and not be so intensely painful.  She describes it as "just chilling!" Her pupils are quite dilated most of the time although they are reactive to light. She is beginning to struggle at school as she finds it extremely difficult to concentrate or understand the work; she is having trouble remembering things and can't tell whether she is hot or cold. She has tried Asprin, Panadol, Ibobrufen, Ibobrufen with Codeine, Panadeine Forte, Mersyndol and Zomig and none of them have had the slightest effect on the headache. The Neurologist put her on a short course of Cortisone which also had absolutely no effect. The Neurologist says maybe Migraine, maybe Cluster Headaches. However, the fact that the intense periods don't happen at the same time each day appears to disqualify CH for him. All the data I have read about CH mentions the regularity of the episodes, so my question is "Does anybody out there have CH which behaves like my daughters?" I have read about all the different types of headaches and migraines and CH seems to be the only one with similarities. She has suffered with Migraines since she was a toddler and had a very bad year when she reached puberty but they have been quite settled for the last 3 years. Her migraines consisted of typical sensitivity to light, noise and smells, and she would lay in a dark, quiet room for relief. However, thinking back during that year she did experience several 'migraines' that lasted for 10 -14 days and didn't respond to medication. At the time she also avoided a quiet room as she said that 'silence' hurt more. Were these really migraine! She had an MRI 2 weeks ago and we are due to see the Neurologist tomorrow. I am desperate for answers or advice. Am I on the right/wrong track? Please help?

The only thing I can add to Wimseys advice is if you are not already having her keep a DETAILED headache diary, do so. A daily journal of whne the headache starts, how long they last how fast the pain builds, how high the pain builds, how long it stays at peak, how fast it  retreats, any side ffecys, auras, drooping watery eyes, sinus issues, any triggers food or environmental that you have discovered, as many details as you can.

It sounds to me...a pure, uneducated layman......that your daughter may be suffering from a multiple diagnosis. Some of what you describe is migrain sounding, some is CH, and some even what we call CPH. So Wimseys advice, to work with a headache specialist neurologist, becomes critical. I stole the following from Bob Johnson, he doesn't mind! Doctors get about 4 hours total training in all headache types in doctor school....your garden variety neuro doesn't get much more so a specialist becomes a MUCHG better option for such a complex condition as your daughters:

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.


2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor

Good luck. I'm dad to two grown daughters, watching them suffer ANY pain is just heartbreaking.

Joe

Now the age might be an issue, that has to be up to doctors to look into..

Ofc it's the specialists that need to figure this out and it is all VERY difficult, bt till they've sorted it out properly..

My 5 cents would be next time she gets a really serious one, drag her to the ER, tell them she's seein a neurologist but they're not yet sure WHAT it is but one of the things suspected is CH.

Demand that they test to give her oxygen at a high flow rate (7-13 litres/min is recommended by most doctors and studies however some need 15+). Ask them to keep her on it for 15-20 min and see if it has ANY effect.

Maybe you'll be able to temporarily reduce her suffering, and maybe you'll find something that might work. Oxygen has effect on appxorx. 70% of cases.

Other than that... tried bamyl with coffeine integrated?

I have a condition that sounds very similar to what she has and it's a combination of diagnoses, CH being one of them so I have some (unfortunate) experience with complex headache issues and yes they can definitely be there more than one.

Has she ever had any sensation of tingling, numbing, loss of movement, thought that "I was going to say something but uhm... I just didn't" or similar "I was going to scratch my  leg from that itch but it just didn't happen". How about nausea etc. The more extra symptoms you can pin (or rule out) the easier it'll  be for your doctor.

So ye a headache diary but not just on the headache but anything extra that coexists as well. Also ask her if she has shorter attacks as well that she might just not bother mentioning.

Could also be a tension headache there if she complains about something like it feels like someone putting a tight tiara over her forehead.

To be honest I recognise a lot of what she's describing and I got a combo of tension headache, cluster headache and basilar migraine.

Thing is it could also be a number of other things, that's the tricky part.

Have they done a MR? An EEG (here my knowledge of the English language fails me but to track the electro stuff in the brain) and done proper blood samples?

Has she tested acetylsalicylic acid with a coffeine component?

There's also unfortunately a high risk that her condition will be dismissed cos she's a female teenager. Med staff don't seem to think you're really in pain till you're a proper adult.

Just MAKE them test her properly, starting with the MR tbh, once you can rule that out you can at least start narrowing it down slightly. Don't allow doctors to dismiss it if you who've seen it feel it's this severe.

I would disagree with you on one point: when you are in doubt and you have a rigid doctor--THAT is the time to make a change!

Headaches are far more complex than most people understand and few know how little medical education general neurologists have in headache.

It's entirely possible to have a headache which shows a mixture of migraine and cluster features. This makes both Dx and treatment more conplex and the services of a specialist more useful.

Thank you to everyone who replied to me. Apologies for the delay - we are in Australia and it's morning here now. I did take her to the hospital last week and tried the O2 Without success. In fact, that night she had one of the worst episodes of all. Whether it's a coincidence or not we cannot determine on one trial. It is so frustrating that nothing offers her even the slightest relief. I am grateful for all the advice and feel more empowered to deal with the neurologist this afternoon. I will post again tonight.

We had to reschedule the appointment for tomorrow morning as she spent the day vomiting and was too unwell to attend.
We live on the south coast of New South Wales about 3 hours south of Sydney, so the names of any headache specialists in Sydney would be wonderful.

Well, we saw the Neurologist yesterday and apart from finding out that the MRI was clear it was a complete waste of time. He is convinced that it is not CH because it didn't respond to the Prednisolone - that is definitive according to him. He said she has a tension headache and should go for a walk!!!!!!!!!
As to the enlarged pupils, the only comment was that it used to be considered a sign of beauty!!!!!!
So, my next move is to make an appointment with a headache specialist and hopefully get some answers. However, that doesn't help with the pain now. Has anyone tried Acupuncture or Bowen therapy? Has anyone had any success with Chinese Medicine?

From an excellent journal article posted by Bob - Italian guidelines for primary headaches: 2012 revised version - J Headache Pain (2012) 13 (Suppl 2):S31–S70:

Quote:


72% is not 100%, so your neurologist isn't correct.