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

Whilst not exactly CH specific, there are people here who have CH + migraine, plus there is a good overlap with a lot of the medication, experts and more, so I thought I'd post about this here.

It's a series of online talks from migraine experts with some familiar from their CH work, like Peter Goadsby.

The talks are free if you watch them when they are given, but if you want to see them later there is a relatively expensive option to get access, with the talks being between 18th and 26th April.

So have a look, see what might interest you and post about what you learn so that others might benefit too.

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.

All headaches are horrible so all information regarding all types of headaches must surely be welcome here.

Thanks for posting,  Mike,  because this allows us to help so many others so much more.

Especially those poor devils who must live with more than just the one type of headache.

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.

I'm just watching a talk by Scott Bruce who is from OUCH UK who is giving a really good description of CH which is exceptionally good at trying to explain what having a CH is like.

For some reason there are tears in my eyes as he is awaking memories, just like when I've seen CH videos on YouTube.

One really good suggestion he had for people to get was diagnosed was to get someone to video one of their CHs, so instead of trying to explain what was happening they can let them watch. Something for the regulars to remember and to suggest to new posters here.

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.

Whilst we often talk here about the importance of having the combination of an effective preventive and effective abortive(s), what several talks have included is covering off the importance of lifestyle too as being equally important. Whilst they were discussing this in respect of migraine, they should also apply to CH too, using SEEDS:

• Sleep - good and consistent quality of sleep
  
• Exercise - daily where possible, but do some during the week
  
• Eat - a healthy diet (mostly) including regular meal times, this also includes keeping hydrated
  
• Diary - keep a headache diary
  
• Stress - reduction where you can
  

We've all seen people post about most of the above, but rarely in combination.

There was also an interesting talk around medical cannabis which highlighted more about how much wasn't known as much as what was known. A lot of this is down to the legal status in most places, with PA being the only state in the US where research can be legally done.

Much of the "it works" / "no it doesn't" can come down to there being multiple different strains, all with different combinations of the many constituents of medical cannabis. So if there isn't a good analysis done of what is being used then attributing success or failure to it is hard.

It was also pointed out that the worst delivery mechanism for it was smoking it, instead there are multiple ways including creams, oils and more that are much more effective and consistent. Plus for people with migraine, smoke can often be a trigger in its own right, so another reason to avoid it being the delivery method of choice.

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

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.

Thanks for that,  Mike.  You're always so helpful and informative.

Now,  I've got my ticket and all that but being something of a techno-cretin myself it would help heaps if you'd keep an eye out the various bits on CH and related HA types and give us all a little reminder in advance.

Things like SUNCT and CPH which commonly travel hand-in-hand with CH and make life so much fun for those who must live with multiple monsters.

Your time and effort is sincerely appreciated by the many victims of CH.com,

Brian in Oz.

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

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

Brian & Mike, is this summit something to attend in person in Australia or New Zealand? I've been researching possible vacation coincidentally right around those 19 - 27 March dates.

-Gregg

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

The 2019 speakers and their topics are now available at - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

Ones which I'll most likely be watching are as below. Whilst most will be linked to migraine, I found last year that most had impacts to multiple headache types including CH:

• Alternative Treatments for Cluster Headache
  
• Controlling Unresponsive Chronic Migraine
  
• Tension Type Headache vs. Migraine
  
• How to Get the Most from Your Doctor
  
• When Migraine Disables But Doesn’t Hurt
  
• Medication for Prevention: Know Your Options
  
• The Latest on Medical Marijuana for Migraine
  
• Botox: Separating Fact from Fiction
  
• How Posture and Massage Affect Migraine
  
• Neck Pain and Migraine: Trigger or Symptom?
  
• How to Interpret Migraine Research
  
• How to Interpret Migraine Research
  
• Clinical Errors that Undermine Migraine Care
  
• Sleep, Insomnia and Energy
  
• Dodging False Promises and Treatment Claims
  
• Migraine and Exercise: Trigger or Preventive?
  
• Hope for Refractory Chronic Migraine
  
• Scans and Tests: Do You Really Need One?
  
• Can A Ketogenic Diet Prevent Migraine?
  
• Treating Each Phase of a Migraine Attack
  
• Understanding Your Workplace Rights
  

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:

Brian & Mike, is this summit something to attend in person in Australia or New Zealand? I've been researching possible vacation coincidentally right around those 19 - 27 March dates.

I got an email this morning which answers the location question:

Quote:

OPENING NIGHT OF THE 2019 SUMMIT UCLA Luskin Conference Center Tuesday, March 19, 2019 4pm - 8pm PST  |  Los Angeles, CA Join us live, IN-PERSON for a very special evening at the inaugural MWSLive, the largest gathering of people with migraine.  Brain-healthy bites and live program featuring two celebrities with migraine and three world-leading experts.  Hurry, limited complimentary tickets available.  Registration is required.

Registration is via the following link and it is showing as a free registration - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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

Brian & Mike, is this summit something to attend in person in Australia or New Zealand? I've been researching possible vacation coincidentally right around those 19 - 27 March dates. -Gregg

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.

AussieBrian wrote on Mar 1^st, 2019 at 11:45pm:

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.

It is a strange thing where they need you to be there in person, so you'd need to be in LA to do the opening night event, but the rest is all online.

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

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:

DAY 1 | ESSENTIALS | WEDNESDAY, MARCH 20, 2019 •      Sleep, Insomnia and Energy Christine Lay, MD, FAHS •      Dodging False Promises and Treatment Claims Elizabeth Leroux, MD, FRCPC •      How to Get the Most from Your Doctor Patricia Pozo Rosich, MD, PhD •      Treating Each Phase of a Migraine Attack Antoinette Maassen van den Brink, PhD DAY 2 | UNDERSTANDING | THURSDAY, MARCH 21, 2019 •      How to Interpret Migraine Research Anders Hougaard MD, PhD •      Scans and Tests: Do You Really Need One? Dimos-Dimitrios Mitsikostas, MD, PhD •      Tension-Type Headache vs. Migraine Lawrence C. Newman, MD •      Clinical Errors that Undermine Migraine Care Zaza Katsarava, MD, PhD DAY 3 | TYPES | FRIDAY, MARCH 22, 2019 •      Alternative Treatments for Cluster Headache Brian E. McGeeney, MD, MPH, MBA •      Diagnosing Pressure Headaches vs. CSF Leaks Deborah Friedman, MD, MPH, FAAN •      Understanding Balance, Vertigo and Dizziness Michael T. Teixido, MD •      When Migraine Disables But Doesn't Hurt Shazia Afridi, MD, PhD DAY 4 | TRIGGERS & SYMPTOMS | SATURDAY, MARCH 23, 2019 •      Drug Interactions with Common Migraine Meds Shivang Joshi, M.D., MPH, RPh •      Neck Pain and Migraine: Trigger or Symptom? Andrew Charles, MD •      Hormonal Contraception and HRT for Migraine Anne MacGregor, MD •      Medication for Prevention: Know Your Options Anna Andreou, PhD DAY 5 | ALTERNATIVE TREATMENTS | SUNDAY, MARCH 24, 2019 •      Can A Ketogenic Diet Prevent Migraine? Angel Moreno, NP •      How Posture and Massage Affect Migraine Mark Braschinsky, MD, PhD •      Migraine and Exercise: Trigger or Preventive? Mattias Linde, MD, PhD •      CGRP and Butterbur: Comparing the Evidence Pierangelo Geppetti, MD DAY 6 | TREATMENTS | MONDAY, MARCH 25, 2019 •      Treatment Spotlight: Drug-Free Devices Amaal Starling, MD •      Botox: Separating Fact from Fiction Andrew Blumenfeld, MD •      Treatment Spotlight: Ditans and Gepants Uwe Reuter, MB, PhD, MBA •      The Latest on Medical Marijuana for Migraine Eric Baron, DO DAY 7 | DIFFICULT CASES | TUESDAY, MARCH 26, 2019 •      The Keys to Better Emergency Care Christopher H. Gottschalk, MD, FAHS •      Controlling Unresponsive Chronic Migraine David Dodick, MD •      Hope for Refractory Chronic Migraine Paolo Martelletti, MD •      Treating Attacks: Real Patient Case Studies Rashmi Halker, MD DAY 8 | LIVING | WEDNESDAY, MARCH 27, 2019 •      Thriving with Multiple Chronic Illnesses Nim Lalvani •      Beware: CGRP Access Challenges Ahead Kevin Lenaburg •      Understanding Your Workplace Rights Stacey Worthy JD •      Beyond Guilt and Shame: One Woman's Journey Jaime Sanders DAY 9 | HIGHLIGHTS WEBINAR | THURSDAY, MARCH 28, 2019 •      Key Takeaways from 2019 Summit Hosts Paula Dumas and Carl Cincinnato

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

Latest email update which could be of interest to anyone relatively close to LA:



Quote:

Do you live in or near LA? If you haven't already signed up and happen to be in the LA area (or can get here), you are warmly invited to attend on March 19th from 4-8pm PST. Food, drinks and goody bags with almost two hundred dollars worth of helpful items will be provided to you FREE to take home. The entire evening is free to attend. But spots are limited to the venue's capacity. Registration is required. Most of the spots have already been booked but there is still time for you and a friend with migraine to join us if you are quick!

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'll pass on the Facebook stuff, I have an account that I check about once every year or two, but otherwise totally avoid it. There will be others here who have more of a clue on it.

For the talks, I got the first days email, but found you need to log in to access it, but I can't find where I've saved my previous password, so I've done a "forgot password", but am yet to get it reset. So I created two more accounts using different emails and no registration emails yet...

Watching the talks is pretty much a case of going to the website (URL above in multiple posts), finding the talk you want to watch, logging in and sitting back to watch experts speak.

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.

If you haven't seen it, watch our own Boston Doc, Dr. Brian McGreeney's presentation on Cluster Headache on the MigraineWorld Summit.  Excellent !!!  He gave a great plug for the Clusterbuster's conference in Dallas, TX this year.  He even talked about vitamin D3 as a CH preventative!

Take care,

V/R, Batch

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

I could have listened to him for hours.

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

There is a 3 hour long video from the opening night event which is now on their website (it was earlier available on Facebook).

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

It is hard keeping up with 2+ hours of headache content a night, so I've been posting notes on the main ones that seem applicable to CH.

Can A Ketogenic Diet Prevent Migraine? - Worth a watch with the interviewee working on his doctorate in this area.

Skipping meals isn't a great idea, especially if you snack on carbs as you get a sugar spike which then drops off as rapidly as it rises.

Food triggers are complex, with not all people being impacted by all the common triggers, even down to even if a food can be a trigger then it isn't always, plus if you've been headache free for a reasonable time then it might stop being a trigger. Most people tend to only have a few triggers, often 4 or less.

Some food triggers might appear to be a trigger, but it could be the symptoms kicking the food craving. Their example was the migraine pro-drome phase makes them crave chocolate so chocolate isn't the trigger, the migraine is triggering chocolate.

The keto diet reduces CGRP, which is possibly how it is impacting headaches.

There is good evidence for it in some areas including obesity, epilepsy and a few other areas, but there isn't much, yet, around headaches.

The interviewee finds it works well for about a third of his patients.

There are multiple studies taking part now to test keto, with one working very well for diabetes.

He also covered how injuries and infections kick off headaches.

Also covered was to balance things out, like regular sleeping times, meal times, food consumption to minimise migraines.

No diet is perfect for all.

Chocolate can be part of a keto diet, just eat the high chocolate chocolate, not the ones full of sugar.

There have been multiple people posting about it on the forums here and there is more and more evidence that it is helping people.

I've been on a keto diet for a few months now. It has helped with my migraines, given me more energy, made me feel better and as a side effect I've lost over 10Kg (which is welcome). I'd strongly recommend people look at this.

Thanks,  Mike. 

I think I've worked out how to open the discussions so I can watch them.  All I've got to do now is wait for my next email with the day's agenda so I can click on the blue bits.

Gotta take my hat off to these people for the incredible work they're doing for everyone who must live with the nightmare of a serious headache syndrome.

It's a sensational effort in spreading the knowledge we all need so much.

I've just realised that by the time I've posted recommendations for videos to watch, it is late night for those in the US, so hopefully my notes help people.

Day 6 - Botox Separating Fact from Fiction

Botox was used first for neurological treatment for an eye condition, which then became a beauty treatment.

People who think they have tried botox for a beauty treatment and find it didn't help migraine, it doesn't mean that it won't work for migraine as the injection points are different.

Botox is blocking the pain / nerve fibres, which blocks the migraine.

About two thirds of his patients are experiencing medication overuse headaches, so the medications people are using, typically triptans, are causing even more headaches. Equally people can be having medication overuse which isn't (yet?) resulting in medication overuse headache (I suspect the same applies with CH too).

Botox is unusual in that it is an FDA approved treatment for chronic migraine (so many of the medications used for migraine and CH are off label - i.e. they were not FDA approved for how they are being used).

A different protocol was used for episodic migraine, which wasn't successful, however cost is likely to prevent another attempt at FDA approval. However the protocol used for chronic should work for episodic.

An interesting discussion around not always staying on a medication long term, but by trying to wean a patient off a medication once the condition it is being treated is controlled you can tell if the medication is still needed. Obviously this doesn't apply to every medical condition, but it will for many.

50% of people using botox for migraine get a 50% improvement, say 20 migraine days to 10 days, with 25% getting a 75% improvement, say 20 days to 5 days. The remaining 25%'s results weren't mentioned.