Brian E McGeeney

[Brian E McGeeney @BrianEMcGeeney]

@tom_sayen #CHtalk and Lyrica is not going to help!!! Good grief

[Brian E McGeeney @BrianEMcGeeney]

@tom_sayen #CHtalk there is a great tendency in the medical community to offer what treatment others are using, without knowledge of what is the evidence. Branded products get advertising and are more well known- does not mean they work!!!!

[Brian E McGeeney @BrianEMcGeeney]

@Cluster_buster @CHtalk again, patients talking some responsibility of writing down past treatments and their experiences with them, and hand to physician; as that gives time back to the physician who can use more time formulating what to do next!

[Brian E McGeeney @BrianEMcGeeney]

@Cluster_buster #CHtalk very true. It is great when a patient hands you a list of past treatments, with comments, keeping it brief (no PhD thesis) so easily read.

[Brian E McGeeney @BrianEMcGeeney]

@MrClusters @Midnight_Furie @AshleyHattle @ADVofSpoonieMom @Cluster_buster @Science37x @jamal_esfahani @TAC_Clusters @ArteCluster @ghostwithinme @GoldenGraine @mrobbinsmd @eileenbunny @CindyAdvocacy @Racer1_NC @Wm_C_Mills Hmm well that is not good
#CHtalk

[Brian E McGeeney @BrianEMcGeeney]

@AshleyHattle @Cluster_buster Improving the general knowledge of non headache specialists is challenging. Teaching them to identify CH is the best thing, as without that, there will be no referral! Maybe patients should have a 1 page summary to hand out!! Maybe an academic article

[Brian E McGeeney @BrianEMcGeeney]

@tom_sayen @Cluster_buster #CHtalk do you mean your specialist or other docs?

[Brian E McGeeney @BrianEMcGeeney]

@Cluster_buster A4 #CHtalk a good history from the patient that confirms the diagnosis of CH! Hence patient should be able to describe what happens etc

[Brian E McGeeney @BrianEMcGeeney]

@Racer1_NC #CHtalk there should be roll of shame for providers who refuse to prescribe. I think that would be fine, as the list is for a very specific identifiable reason

[Brian E McGeeney @BrianEMcGeeney]

@AinslieCourse @AshleyHattle #CHtalk this is new to me as well Ainslie!

[Brian E McGeeney @BrianEMcGeeney]

@AshleyHattle A1 #CHtalk even if the CH is not improving, the treating provider should be continuing to try and help

[Brian E McGeeney @BrianEMcGeeney]

@AshleyHattle @Wm_C_Mills Physicians can counsel patients on the advantages and disadvantages of any treatment, even if schedule 1 illegal (as has been affirmed in courts first amendment right). Or they can admit not knowledge. Any other approach (ignore, fire you, run away) means they are a weasel!

[Brian E McGeeney @BrianEMcGeeney]

@AshleyHattle @Science37x Well I understand there were discussions in Europe about starting a study. Have not heard recently, but Bob Wold would know, and he was positive about the chances of a trial over the summer when discussed

[Brian E McGeeney @BrianEMcGeeney]

@AshleyHattle @CHsupportgroup @Cluster_buster As a patient trying to come to an opinion it is not made any easier with biased experts, conflicted with many industry relationships; I see it but much harder for patients to see

[Brian E McGeeney @BrianEMcGeeney]

@Cluster_buster Well the antibodies- BY FAR, then BOL-148 etc. There is a nasal oxytocin spray in development for migraine that may be useful for CH. Apart from the continued growth in psilocybin studies for a range of indications, that is useful.

[Brian E McGeeney @BrianEMcGeeney]

@CHsupportgroup @Cluster_buster I have a feeling the CGRP antibodies will switch off CH for some, and switch off for weeks. The data on gammacore was poor actually, yet to see the second study however but ACT1 (study) not good. Media quoted experts hopelessly conflicted which can influence opinion!!

[Brian E McGeeney @BrianEMcGeeney]

@CHsupportgroup A characteristic of physicians is when not that familiar with the subject matter, act in a very cautious way.

[Brian E McGeeney @BrianEMcGeeney]

@CHsupportgroup The person saying you must break at 20min had something in mind-might be trying to prevent you continuously using for hours but not going to happen. There is NO REASON TO STOP AT 20min unless you have SEVERE lung disease AND retain CO2 and even then is a question. My thoughts!!