Just bumping this as it is kicking off in a couple of days time and there is a lot of content that will also apply to people with CH too from medical experts in CH.

The talk by Peter Goadsby was excellent, which was no surprise based on the OUCH talks I've seen him done.

He gave some great advice about how to best manage an appointment with a headache specialist.

First off, be prepared with evidence to show the frequency of the headache plus the impact of each. But to avoid pages and pages of data which is beyond what they can easily analyze. What he suggested was to summarize things to show say how many days per month the headaches strike and descriptions of the impacts of typical headaches. This lets the specialist assess this combination rapidly.

Second to have a list of what medications have been tried, their dose and for anything which was stopped the top 3 or so side effects. This lets them see rapidly see what has been properly tried out, what hasn't been to a high enough dose or similar.

This means that the history part can be covered off quickly, leaving most of the appointment to focus on what happens next, not the past.

Whilst the talk was migraine centric, the advice covers any headaches or even any medical appointment.

This is terrific information,  Mike,  and sincere thanks for keeping us up-dated as things roll along. 

I must admit,  though,  I've never been able to watch a video of someone getting hit and would be devastated to learn there was ever a video of me wrestling the monster we know so well.

My hat still comes off to everyone who's ever made a video,  and posted it publicly, as this can only ever lead to better things for us all.

Keep it coming,

B.

I've just got the email for the 2019 summit which is March 20-28 (US dates).

To find out more and to register (for free) visit - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

Whilst most of the talks are about migraine, a lot of the content applies to headaches in general, including CH.

Each day there are 3-4 videos which you can watch for free, so you can see the entire content without paying a cent. However if you miss them you can still see them later but at a charge (it'll be how they cover a lot of their expenses). You get an email with links to the talks and an outline of the talk, so you can pick which one(s) interest you.

The schedule is expected to be released towards the end of this month in early March and will be viewable at - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

And remember for those people in NZ and AU the dates are the 19-27 March

It all happens online for the videos, which follow an interview format in a room, i.e. no obvious audience.

I suspect it happens at the same time as a headache conference which is how they get all the headache specialists together.

Earlier this year they were looking for volunteers to assist (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ).

Onya, Mike. I seem to have missed that one.

There's another couple of topics that interest me, too, regarding the joys of life with multiple headache types.

Paula and Carl are doing a terrific job.

LasVegas wrote on Feb 7^th, 2019 at 4:32pm:

And if you happen to find yourself in Oz anytime I can promise you're welcome here in Cairns in tropical North Queensland.

I'm happy to show any CHead around this little patch of paradise and some have even lived through the experience!


Hey, Mike.  I'm a bit of a techno-cretin so does this mean the inaugural knees-up is also going to be broadcast live and we can see it on our computers?

Certainly I'm a registered passenger but have no idea how to drive the thing.

The schedule has been published - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Note that the dates are US dates (EST time zone) - Kiwis / Aussies will need to add a day (i.e. day 1 is our Thursday 21st March).

Ones I'm interested in I've highlighted, covering my interest in CH, migraine, headache impacts and research.


Quote:


Remember that you need to watch the video on the day to be able to access the content free.

Hey,  Mike.  I'm a self-confessed techno-cretin but I'm dead keen to watch some of the stuff happening at this conference  -  especially the bits for those of us who get to enjoy more than the one type of nightmare.

I've no idea about this Facebook stuff,  which I'm told is for the best,  and as for live-streaming I really thought that was a great way to catch trout.

You're a bit of a wizz at these things so what's the chance you could post links here at ch.com for the parts of this summit that might be of interest to us ClusterHeads?

I'll be happy to show my gratitude in the usual way next time we're both sitting in the same pub.

I'm confused, just tried again and it didn't need me to register.

Some notes, not perfectly formatted...

How to Get the Most from Your Doctor

Good advice for new people, especially the importance of a headache diary, plus making a one page summary and not 50 pages of A4. This advice covers any headache type or even other medical issues where we need to communicate the significance and frequency of impacts. The value of bringing a partner / wife / husband with you to an appointment so they really understand what is happening, especially if they are skeptical. People really should have prepared questions plus take notes (otherwise only around 10% is remembered!). Although this doctor takes notes for the patient so they concentrate on what is being said (not your average doctor). Or ask if you can record the appointment using your phone (not all may agree). Get a doctor who listens, takes time and doesn't just do "...here is paracetamol..." or similar. And if you don't get one who works well, seek out another and if necessary repeat until you get someone.

And the most important thing of all is getting an accurate diagnosis as so much is dependent on that, especially for the more complex headache types / combinations of them.

Plus you, the patient, need to take charge of your life and your medical conditions.

The talks, at least today's, are 30+ minutes long, so will be hard to get through them all, so be selective, listen to the first few minutes and see what will be best for you in the time you've got available.

Just watching that one too.

A great presentation and well worth watching it if you can (would be good if some doctors watched it too as many would learn a lot).

A new definition of chronic, where you go for 12 months without a three month (was one) break.

O2 as an abortive is also carried by the blood plasma, not just the hemoglobin.

Nasal lidocaine and ketamine can be used as an abortive.

He isn't a fan of verapamil as it doesn't work that well, but it is the "gold standard", with poor evidence. Similarly with anti-convulsants and anti-seizure medications. He suggests melatonin as an option. But all of these don't have FDA approvals or a lot of evidence.

The FDA may give approval for the CGRP medication for episodic CH as a preventive.

Interesting discussion around LSD and mushrooms working as a preventive, working better than mainstream medication.

He talked about a device (Gammacore) which works for episodic, not for chronic, although he didn't seem to be a great advocate.

Another device is implanted and during an attack is activated using an external device. It is still in development and is not yet improved, but he is watching how it progresses.

But nothing comes close to O2 / sumatriptan injections or nasal spray.

Diet isn't something he links to CH.

Kudzu was mentioned, with reported benefits, but no real evidence based medication.

D3 got a good mention too, not just for CH but also multiple others too, plus the importance of blood tests.

He also praised how well people with CH reacting to meeting others with it.

He recommended a book - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

I could have listened to him for hours.

He practices in Boston, so for anyone near there he would make a great headache specialist.