Hi All. I have an 12 yr old daughter who suffers with ch.

I didn't know at the time, but looking back I'm sure she was born with this. I remember her, tiny, in her cot, sound asleep, like an angel. Then as if a demon or satan himself had entered the room, that only she could sense, she would wake up screaming with an inconsolable cry that I couldn't take away or understand, no matter what I tried. As suddenly as the demon would come, so he would flee the room. She would, without memory, fall back to sleep in a turn of a second.
Please no judgement or crazy thoughts of me, although through reading all your posts, I think I'm safe. I inquired about an exorcist, as that is how 'freaky' it was, how it would come and go and months/years in between of it happening again, and there was no repeatable pattern, or so I thought at the time.

As the years have passed her ch has morphed from different patterns to different lengths of time in between attacks, with different meds and tricks along the way.

Off topic, this is the first time I have been able to use words (all learnt on here) to explain this, and i know it will be understood. Must mention how 'weird' it has been explaining this to teachers, friends, family. If I didn't have a daughter with ch... i don't think I would ever have known about it. I have not met anyone, or know of anyone who suffers from this here. The was a message somewhere that newbies should let 'you' know the history and story of a new ch sufferer, but not sure where to post or write this?

Just reading through the message boards, all the links.... I have already learnt LOADS!!!!!! She has been in a cylce, having an attack for the last 6 days, the worst she has had in over a year. I think its close to the end now. During this last attack i have been close to this forum and the posts. Her and i have discussed the Kip scale and terminology we can use so I can understand how she feels, when she feels, and basically do what I can to 'fix' her. I actually can't explain how awesome it has been talking with her about this after being on here. We understand each other so much better now when she is going though this.

MumB

Hi Mum...Welcome! You done found the RIGHT place....and you already know it!!!

First...what Peter said...absolutely...

This one made me cry...I'd rather jump in a wood chipper than see a child with CH...
and exorcism sounds about right...we call it "the beast" for a reason...it seems alive,
evil, and otherworldly...............

Best

Jon

Part 2 (wasn't sending)

She would often miss school because of ch. A definite trigger each and every year was sports day and gala. Bear in mind we are in SA so temps reaching 38 deg on average days. So my thinking, heat, dehydration, screaming and shouting, over exertion etc. So i banned her from participating. The rotten school insisted she still be present on the side lines. This didn't work.. her friends were dancing and signing their war cries, friends needed encouragement, excitement was there... how could we expect her to sit motionless and not get involved. Each time i wrote to say she will not be attending, each time they responded it was COMPULSORY!. So of course, fingers to them! I moved her the following year.
I eventually found a great Pediatrician, at about age 7, who agreed that she had the symptoms and did indeed suffer from Cluster headaches. Explaining there was no 'test' as such for CH, basically they would take the history. This would form a patter/symptoms to indicate CH. Other options to look at was a brain tumor (can you imagine what went through my mind). That's it!!! She has a brain tumor!!!!!!! I am going to loose my child!!
Injecting myself with a pretend, calm the F down injection, i listened further. The likely hood of her having a brain tumor vs ch was of course extremely low. He suggested we get a CT and a MRI. Not having medical aid, we couldn't afford the private hospitals, and of course a government hospital visit was usually followed shortly by a funeral, and you were only going to get those scans if it was life threatening.

One day out at the shops, age 10 plus, and it started. I didn't have any Myprodol on me. Off to the drug isle, there was a selection of Disprin, Ponado and Grandpa. Fearing in the back of my mind this wasn't going to work, disprin was week, she had tried most adult meds, there was no way this disprin was going to work. We won't catch it in time, she's going to have a full blown attack for days, miss school, miss her concert. She couldn't deal with this again!

So with disprin as the best choice of drug available, I opened the packet and the 'not yet paid for' water, and I gave her two tabs.

We of course left the shopping and headed home to Myprodol. As much as I was trying to stay calm, and seemed successful at doing so, I could see her anxiety was building. The look in her eyes, fighting the acceptance of what she knew could well be coming. The anxiety was peaking, the pain was coming, she was freaking out because we weren't getting home soon enough, it reached a 6/8, couldnt really tell between the fear or the pain.

I could NOT BELIEVE IT... by the time we where were home she said she was feeling tired but the pain had subsided. She lay down and passed out. She woke up at a 0......????? No..... it couldn't have worked?? and so well??? The attack did come again a few hours later, mild, about a 4/5. Then with even more hours in between, another one, at a 3. By this time I had come down to 1 Disprin. Then it disappeared. OMG. Disprin!!!!!!! As elated as i was that a seemingly harmless drug, cheap, available, was actually working, I had a very opposite motherly feeling. This many years I had pumped her with stuff that no child should have. My chest would be bruised from crying from seeing her in pain, never mind the pain she was experiencing all this time. And it was Disprin! Why hadn't i tried it before? Why did i just dismiss it? If i had just tried Disprin, something so common..... ( i have been told since by another GP, that Disprin given to kids can be super harmful - which is against what almost every mother from the 80's would tell you - ie. my mother. Apparently that's all she ever gave me, swore by it. Go figure?

Part 4

Then recently - last week - Sunday through to Friday the demon returned!! Disprin wasn't working. Through research I found dividing doses and giving it over 10 min intervals, works. It takes longer, has the same end result, but is actually less medication overall, saving her tummy lining. So this last attack we have experimented with different doses of migril and disprin and the combinations and the time intervals. It has helped manage the pain fairly quickly, but the cycle was set and in full force and back to previous patterns of three times a day. It reached its peak on Thursday night - reaching an 8, fearing a 10. It backed down, with Friday getting better and today nothing!!! The cycle has stopped. Not 1 shadow today - we are back at zero. I hope!

Something i need to mention, not to grose you boys out, medically I am concerned it is linked, and if it is what it may mean for her. She has matured very quickly at got her first period six months ago. So basically at 11yr 6 mnth she matured. No attacks for the last 6 months, so all was cool. This last attack, she started her period on the Wednesday, the ch started late Saturday night. Days apart.... but though it was worth a mention.

On that splendid note, it has been awesome to splurge this all out.....p hhheeeww.

If you have gotten all the way to this part - THANK YOU so much for reading our story. xoxo

Wow, didn't think I had so much to say.

Hi and welcome

As both Jon and Peter have said, it is painful reading about a child going through all she is doing. It can be tough enough dealing with severe headaches as an adult, but for a child, well it must be so much tougher. Plus it is very obvious from your posts how tough it is for you too.

Your posts have a lot of detail about the effect of the headaches, but very little detail of the diagnosis other than you and a friend doing a "diagnosis" of CH, with "many doctors" saying migraine.

Diagnosing and treating complex, severe headaches is very hard to do. Family doctors (GPs), even most neurologist don't have the skills or experience, which is why we always strongly advise people to work with a headache specialist.

The standard definition of CH (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ) has some straightforward diagnostic criteria, but the last one is ruling out every other possible cause. This is why you've been suggested you get a CT / MRI done to rule out many other causes of the same symptoms.

So much of what you have written sounds to match classical CH, like the cycles, clockwork timing, pain levels, screaming and ranting, kicking legs, but other symptoms like sleep helping and responding to mild pain killers does not (which are more aligned with migraine). However it can often take time for all the classical CH symptoms to establish, plus it is likely that for a child it might be different to how some symptoms establish themselves.

It is also possible that she has more than one headache type, which could be why there are CH symptoms and migraine symptoms. I'm one of the "lucky" ones with CH and migraine, which can result in headaches that don't quite match either set of classic symptoms.

For medication, you've only mentioned pain killer type medication as a way to abort / manage the headache. Typically with CH we take a preventive (verapamil, lithium, topamax or similar) plus use abortives to kill off a CH (oxygen, imitrex, sumatriptan, etc.). Since you've not mentioned any of these, are these the hard stuff / adult meds you refer to or have they not been suggested as options?

If there is some element of migraine, then I'd avoid taking any medication which contains codeine, like the Myprodol you mentioned. From personal experience plus talking to others with migraine, codeine seems to increase the frequency of migraines and their severity.

For the question around periods, this will be linked to hormone changes in some way. Over the years several women have pointed out that when they are pregnant (another time with significant hormone changes) they often find it stops their CH for many months.

I really do hope that you are able to get your daughter's headaches under control and soon.

Hi Mark

Thanks! Have been reading about the vit D3, need and will read more, thank you for your suggestion.

Hi Peter.

Sorry, the most important was the Neurologist. Yes I have been searching, and saving. This is on the cards asap.

Thanks

Hi there,

My girls are in their 30's now.....just spent the afternoon swimming with my 2 grandchildren.....that's what I meant by " it gets better".

Nobody in my family has CH and I come from a large family. There can be a heritary connection but not in my case, thankfully, because I wouldn't wish it on them.

Our good friend Batch, a fellow sufferer, has spent years devising the anti-inflammatory  plan and it certainly worked for me and many many others here.

Anti-inflammatory, D3....it's the same thing and best described in part 2 of the link I sent you in my earlier post.

That's why you see his named referred to by so many.

I would ask you ask your Doctor about home Oxygen. Again, it has to be taken at 15 litres per minute flow rate, but it is a standard abort for CH.

Keep the posts coming.

Peter.