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?

I can understand your desperation, and your need for answers. The sad part is answers are hard to come by with headaches in any form. And your daughter's youth may limit the treatment a doctor is willing to prescribe. Still, I have a question: is the neuro a headache specialist? If not, then you need to find one, or be referred to one. Headaches are so very difficult to pin down.

But let's assume your neuro has some experience and knowledge with complex headaches. Be sure to read this site thoroughly and make notes concerning the interventions available, along with any research you may need to convince your doc. The symptoms you describe have been present at one time or another to most of us, and the fact that they do not manifest in a "usual" cluster pattern is not all that telling. Clusters frequently are all over the place in the beginning.

So read, take notes, determine your neuro's level of experience with complex headaches, and go to the appointment armed and ready to defend your daughter's need. God bless. lance

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

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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

Thank you Lance for your speedy reply and advice. If I feel that this Neurologist is closed minded I will seek another Specialist. I did come across a list of Doctors on a CH web site that I will make use of if necessary. It is difficult to be assertive if you are not sure whether you are on the right track, but I feel a little more confident now.

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. :P

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 was thinking the same thing about asking them to try her out on O2, at a high flow rate, with a non re-breather mask. 

I hope you find some answers for her. 

Jeannie

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.

Quote:

However, the fact that the intense periods don't happen at the same time each day appears to disqualify CH for him.

Not everyone with CH has all the classic symptoms, especially relating to the CHs being at the same time of day. When CH first starts it can often present a confused mix of symptoms, sometimes for an extended period before settling down, only to change again.

The fact that the neuro is ruling out CH just on this basis suggests to me that he is not experienced in dealing with CH.

It also sounds like, as others have commented, that there are multiple headache types in play here so having a good, experienced headache specialist will be vital to determine exactly what is happening and what the appropriate treatment(s) are.

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.

Don't read too much into oxygen not working when tried at the hospital. With using oxygen to kill CHs it is critical to get onto it quickly, so a delay in driving to hospital and getting through the red tape required to get admitted, etc., may well have been enough to make oxygen not work too well.

Also hospitals rarely let people get a good flow rate (15lpm or higher) and a non-rebreather mask, again impacting how well the oxygen can work to kill off the CH (if it is a CH).

There are several people here on the forums from Australia, so by posting which state you're in you may be able to get some suggestions on good neurologists to see.

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.

These were the only doctors listed on the OUCH website for Australia:

Australia 
Prof. Malcolm Horne
Melbourne, Victoria

Prof. James Colebatch, PhD, FRACP
University of New South Wales
Randwick, MSW

Dr. L. Sedal
Richmond, Victoria

Hopefully some of our "down under" CH'ers will pipe in with suggestions.

Joe

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?

Cluster Headaches are a one side attack, it can change sides but is defined by it's one side at a time, with only rare changes. Please have her take the "cluster quiz" below. It will help both of you decide if CH is what she has.

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I know it must be bad. I have a daughter too. Learn all you can.

Don

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:

Steroids In a retrospective study, prednisone (10–80 mg/day) induced a significant reduction (72 % of cases) or a complete remission (58 % of cases) of attacks within 3–10 days in a small sample of CH patients with episodic or chronic form, with the best results obtained for dosagesC40 mg[283].

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