Migraine Summit Poses Opportunities For Fibromyalgia and Chronic Fatigue Syndrome Patients

Cort

Founder of Health Rising and Phoenix Rising
Staff member
A Different Kind of Summit

Online Health Summits have become something of a big deal over the past couple of years. They provide patients free access (if they watch them each day) to ideas and therapies they might not have. They've also become somewhat predictable in their lineups of alternative health MD's and practitioners.

[fright]
headache-II.jpg
[/fright] The "Worldwide Migraine Summit" from April 23rd-29th is different. It's got some alternative health practitioners but it's also packed with doctors from prestigious institutions such as the Mayo Clinic, the Cleveland Clinic, UCLA and the Harvard Medical School. Eleven neurologists and four directors of University Departments are speaking.

With support from major non-profit groups such as The American Migraine Foundation, the National Headache Foundation and The Migraine Trust, this Summit is different indeed.

The lead talk on the "Top Ten Myths of Migraine" by a Professor of Neurology will almost explode the myth that migraine is rare. The 2013 Global Burden of Disease Study found that migraine was the sixth highest cause worldwide of years lost due to disability (YLD). Over 36 million Americans are effected. About 15% of women and 6% of men are believed to suffer from migraine and that number goes up considerably for fibromyalgia and chronic fatigue syndrome.

The Fibromyalgia, Chronic Fatigue Syndrome, Migraine Connection

A large Spanish study found that over 50% of fibromyalgia (FM) patients met the criteria for migraine - and many of them likely had no idea that they had this affliction. (More FM patients met the criteria for migraine than for chronic fatigue syndrome.) The penalty for having fibromyalgia and migraine was a harsh one as well which included significantly increased risks of also having chronic fatigue syndrome (ME/CFS) and depression as well as hypertension (p<.004), asthma (p<.01), irritable bowel syndrome (p<.02), and PTSD (p<.005).

Dr. Baraniuk, a chronic fatigue syndrome (ME/CFS), Gulf War Illness and FM researcher believes similar brain issues may underlie all these diseases. Baraniuk has even used migraine medications successfully in ME/CFS patients who don't have migraines.

Other doctors have found treatments used for migraine helpful in ME/CFS/FM as well. Dr. Katherine Downing-Orr and Dr Goldstein before her, uses nimodipine, a calcium channel blocker often used for migraine relief, in her treatment protocol for ME/CFS. Dr. Teitelbaum uses magnesium, a popular supplement in FM and ME/CFS, to help his patients with migraines.

Summit Presentations

Many people with FM or ME/CFS may experience migraines without realizing it which brings us back to the week-long Migraine Summit. It features several talks on diagnosis: "Recognizing and Treating Four Types of Migraines", "Rare Migraine Types: Vestibular, Hemiplegic, and Complications" and "How to Make Sure that You Have Migraine".

Many more talks on a wide variety of treatment options are being given including "Best and Worst Supplements", "Calming the Hypersensitive Brain", "Avoiding the ER", "New Migraine Therapies Under Development", "Neuromodulation Devices That Can Ease Pain", "Best Acute Treatments You May Not Have Tried", "How Sleep can Relieve and Trigger Migraines", "Migraine Treatments for Kids" and others.

Unlike many experts on Online Health Summits, many of the presenters are academics, presumably with nothing to sell.

Register

Registering for the Worldwide Migraine Summit will give you access to the complete talks from each day or you can buy the entire Summit and download all the talks and listen to them at your leisure.

Register and/or buy the 7-day Summit here. (Health Rising will receive a portion of sales of the entire Summit)

More on Migraines, fibromyalgia and chronic fatigue syndrome from Health Rising
 

Attachments

Last edited by a moderator:

Issie

Well-Known Member
FYI- magnesium is a natural calcium modulator. (ie. Calcium channel blocker).
I have FMS and migraine. Didn't realize the connection.
Issie
 

GG

Well-Known Member
Dr. Baraniuk sounds familiar for some reason? What is his 1st name? What state does he practice in?

GG
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Dr. Baraniuk sounds familiar for some reason? What is his 1st name? What state does he practice in?

GG
Baraniuk is a researcher who apparently treats ME/CFS as well. He's in Georgetown in Wash DC
 

GG

Well-Known Member
Baraniuk is a researcher who apparently treats ME/CFS as well. He's in Georgetown in Wash DC
Ah, that is where I have heard this name, considered getting into his recent study with the Exercise, but I don't the friends/social support to have helped make that a reality :(

I think it would be interesting for me to do the 2 CPET test again, been about 7 years now, still exercising and lost a good amount of weight last year, hope to repeat that this year to be in good shape, but still not great lung capacity/endurance.

GG
 

Bertiedog

Member
Severe migraines and vertigo were the very first symptoms for me that came on 2 weeks after I had a nasty bout of the flu and couldn't seem to recover. I was never the same after that and this was in 1979! I didn't really get a diagnosis of ME/CFS until 2000 when the menopause finished me off!

I still suffer with regular nasty migraines especially when in an ME/CFS flare (which I have at the moment). Low dose Lyrica has helped and they aren't quite so painful but still can make me feel very unwell. I do respond well to Imigran as long as I take it early on in the attack.

I have never been sick only on occasion have I felt sick, it's just the pain and occasionally nasty dizziness too that can be almost unbearable at times - well pre Lyrica they were like that.

Thanks Cort for bring this Summit to our attention, I will definitely be listening every day!
Pam
 

h3ro

Active Member
It looks like Nimodipine works TRP channels, TRPA1 in particular. That's really interesting given it fits with NCNED's research.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Severe migraines and vertigo were the very first symptoms for me that came on 2 weeks after I had a nasty bout of the flu and couldn't seem to recover. I was never the same after that and this was in 1979! I didn't really get a diagnosis of ME/CFS until 2000 when the menopause finished me off!

I still suffer with regular nasty migraines especially when in an ME/CFS flare (which I have at the moment). Low dose Lyrica has helped and they aren't quite so painful but still can make me feel very unwell. I do respond well to Imigran as long as I take it early on in the attack.

I have never been sick only on occasion have I felt sick, it's just the pain and occasionally nasty dizziness too that can be almost unbearable at times - well pre Lyrica they were like that.

Thanks Cort for bring this Summit to our attention, I will definitely be listening every day!
Pam
Long time to get a diagnosis! Good luck!
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Ha! Didn't know that....I've been planning to do a blog on that book for years!
It looks like Nimodipine works TRP channels, TRPA1 in particular. That's really interesting given it fits with NCNED's research.
 
Last edited:

grizzly

Member
After reading this I have to highly recommend if you have Fibro, ME/CFS you try to get into one of Dr. Baraniuks studies. He is absolutely amazing. I spent the last 3 1/2 days with him and learned a tremendous amount of information on my illnesses.

He is one of the few doctors who takes the time to explain EVERYTHING to you. If he know the why, he will explain it. If he isn't sure he will tell you. Upon each test I completed he explained the results and would even show me specific point when my body would reach exertional fatigue and explain why it's happening scientifically.

At the end, he DX me with all CFS, ME/CFS criterias, all the Fibro criterias, Post Exertional Fatigue, Autonomic Dysfunction, migraines Typical / A-typical and POTS. He also pointed several points where the VA misdiagnosed me.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
After reading this I have to highly recommend if you have Fibro, ME/CFS you try to get into one of Dr. Baraniuks studies. He is absolutely amazing. I spent the last 3 1/2 days with him and learned a tremendous amount of information on my illnesses.

He is one of the few doctors who takes the time to explain EVERYTHING to you. If he know the why, he will explain it. If he isn't sure he will tell you. Upon each test I completed he explained the results and would even show me specific point when my body would reach exertional fatigue and explain why it's happening scientifically.

At the end, he DX me with all CFS, ME/CFS criterias, all the Fibro criterias, Post Exertional Fatigue, Autonomic Dysfunction, migraines Typical / A-typical and POTS. He also pointed several points where the VA misdiagnosed me.
I love it! I was in one of his studies as well - really enjoyed my time with him. What study are you in?
 

ShyestofFlies

Well-Known Member
Been reading some and it struck me that certain things about the rare hemiplegic migraines in particular have some overlap with some of my crashes that I have identified as the most scary ones (partial paralysis). Given that it has genes I would be interested to see if anyone with ME/CFS has had their data flag for the same genes involved. (Like the 23andme and other "entertainment" genetic tests)
They are:

"FHM may be caused by changes (mutations) in the CACNA1A, ATP1A2, SCN1A, and PRRT2genes. The first three of these genes give the body instructions for making proteins involved in moving charged atoms (ions) across cell membranes. "
From https://rarediseases.info.nih.gov/diseases/10768/hemiplegic-migraine
 

Issie

Well-Known Member
Been reading some and it struck me that certain things about the rare hemiplegic migraines in particular have some overlap with some of my crashes that I have identified as the most scary ones (partial paralysis). Given that it has genes I would be interested to see if anyone with ME/CFS has had their data flag for the same genes involved. (Like the 23andme and other "entertainment" genetic tests)
They are:

"FHM may be caused by changes (mutations) in the CACNA1A, ATP1A2, SCN1A, and PRRT2genes. The first three of these genes give the body instructions for making proteins involved in moving charged atoms (ions) across cell membranes. "
From https://rarediseases.info.nih.gov/diseases/10768/hemiplegic-migraine
I would need to know what the mutations are vs Normal to check mine. But I do know I have issues with calcium and sodium channels. It's also thought that POTS people have issues regulating potassium. Thsee are all being found in a lot of POTS patients.
Issie
 

Get Our Free ME/CFS and FM Blog!



New Threads

Forum Tips

Support Our Work

DO IT MONTHLY

HEALTH RISING IS NOT A 501 (c) 3 NON-PROFIT

Shopping on Amazon.com For HR

Latest Resources

Top