Cluster Headache Community

Cluster Headache Community Clusterheadache Community is an excellent, updated resource for cluster headache patients. Accurate information & support readily available. Donations are always greatly appreciated.

Operating as usual

09/28/2021

Happy 13th
Anniversary
Clusterheadache
Community

09/28/2021

Happy 13th Anniversary
Clusterheadache Community 🥳

07/02/2021

Let's CELEBRATE!!!

Our community has been advocating hard since 2011 to reverse a CMS (Centers for Medicare & Medicaid Services) policy that did not allow for coverage of home use of oxygen as a treatment for Cluster Headache. Someday we’ll recap all the steps involved in this long journey.

Today, we share some long overdue good news. CMS has published their response to our appeal via a “Proposed Decision Memo”. They “propose[s] to modify its NCD for Home Use of Oxygen at section 240.2 of the Medicare NCD Manual to expand patient access to oxygen and oxygen equipment in the home, and to permit contractors to cover the use of home oxygen and oxygen equipment in order to treat CH and other acute conditions.”

https://www.cms.gov/medicare-coverage-database/details/nca-proposed-decision-memo.aspx?NCAId=301

Join us. Don’t suffer alone.
04/12/2021

Join us.
Don’t suffer alone.

Join us.
Don’t suffer alone.

03/21/2021
#internationalwomensday2021
03/08/2021

#internationalwomensday2021

Today we celebrate International Women’s Day and all strong women involved in our reseach🧠💪🏼!
#internationellakvinnodagen #internationalwomensday #iwd2021 #karolinskainstitutet #biomedicum #carminebelinlab

02/18/2021

Shoutout to @alaznegonzalez
“What If”
❣️
💜
❣️
Thank you for always #sharing, #caring #supporting & doing #whatyoudo !!
The entire #ClusterheadacheCommunity appreciates you❣️
.
.
.
.
#EvenIf #clusterheadache
#tinysparkle #lefteye #communitysupport #trigeminalautonomiccephalalgia
#friendssupportingfriends

Shoutout to @alaznegonzalez  “What If”❣️💜 ❣️Thank you for always #sharing, #caring #supporting & doing #whatyoudo !!The ...
02/18/2021

Shoutout to @alaznegonzalez
“What If”
❣️
💜
❣️
Thank you for always #sharing, #caring #supporting & doing #whatyoudo !!
The entire #ClusterheadacheCommunity appreciates you❣️
.
.
.
.
#EvenIf #clusterheadache
#tinysparkle #lefteye #communitysupport #trigeminalautonomiccephalalgia
#friendssupportingfriends

Shoutout to @alaznegonzalez
“What If”
❣️
💜
❣️
Thank you for always #sharing, #caring #supporting & doing #whatyoudo !!
The entire #ClusterheadacheCommunity appreciates you❣️
.
.
.
.
#EvenIf #clusterheadache
#tinysparkle #lefteye #communitysupport #trigeminalautonomiccephalalgia
#friendssupportingfriends

ATTN: 🥳🤕💜Migraneurs
10/03/2020

ATTN: 🥳🤕💜
Migraneurs

If you have tried any of the new migraine medications and would like to share your experience, CMA is looking for contributions for the blog. Please contact Kristen at [email protected]

Migraine World Summit
09/15/2020

Migraine World Summit

Patients with Cluster Headache need your help today!

A letter sharing new data that supports the coverage of home-use high-flow oxygen to treat cluster headache has been created to be sent to Centers for Medicare & Medicaid Services (CMS) on 9/16/20. This letter is for all migraine and headache community members and supporters to advocate for policy change on this crucial treatment option.

You can read the Sign-On letter at http://bit.ly/clusterletter916 .
Be an advocate and SIGN THE LETTER electronically. It takes about 1 minute and can be found here- http://bit.ly/cluster916

If you'd like to take additional steps, please consider submitting a comment to CMS that expresses your support for this policy reconsideration at http://bit.ly/clustersupport916

We appreciate your support!

#o2forCluster #cluster #clusterheadache #oxygen #oxygentreatment #suicideheadache #migrainesupport

US citizens, take action now. Here's how;"Through our platform here, please request that your Representative and/or Sena...
02/27/2020
Advocate For Funding of Training For More Migraine & Headache Disease Doctors

US citizens, take action now. Here's how;

"Through our platform here, please request that your Representative and/or Senator support the Opioid Workforce Act (H.R.3414) and vote to amend the bill to ensure federal funding of UCNS accredited Headache Medicine Fellowships.

You will be requesting this following from your Representative and/or Senator: "I strongly urge you to vote to amend the Opioid Workforce Act (H.R. 3414 / S.2892) to ensure federal funding of UCNS accredited Headache Medicine Fellowships."

We urgently need your help with a specific and vital request. Your Representative and/or Senator in Congress is a member of a key committee that is just about to review a bill that could greatly increase the number of doctors trained to treat...

Advocacy matters!  Many cluster headache patients cannot take triptans. These new medications need to be accessible and ...
12/02/2019
Migraine World Summit

Advocacy matters! Many cluster headache patients cannot take triptans. These new medications need to be accessible and affordable. Contribute to the efforts by commenting before the deadline, December 6th, 2019.

You are likely uniquely qualified to explain the impact of living with migraine disease and the need for access to new medicines. We all deserve better.

Three new acute (aka rescue) migraine medicines are expected to become available in early 2020. We are asking people living with migraine to write the Institute for Clinical and Economic Review (ICER) to help them better understand this disease. ICER’s assessments of medicines are used by many insurance companies in determining if they will cover and enable patient access.

Comments from patients are accepted now until December 6. Together with the Headache and Migraine Policy Forum, we have created a Patient Guidethat explains how to submit comments and what you should include in your migraine story. (There is even an Example Letter that you can copy-paste and then fill in the blanks - So EASY!)

The migraine community is getting stronger and we are expecting hundreds of letters to be submitted. Please add your story to this wave of support for access to new medicines!

You can view the ICER Patient Guide here: https://www.headachemigraineforum.org/icer-2020

CHAMP - Coalition For Headache And Migraine Patients
11/23/2019

CHAMP - Coalition For Headache And Migraine Patients

Your input is needed! Take the CHAMP Patient Access Survey to anonymously share your experience living with headache, migraine or cluster diseases. Your voice will help advance research and improve access to appropriate care and therapies.

Bonus: Enter the drawing for a $25 Amazon gift card.

Let your voice be heard:
https://tinyurl.com/champsurvey19

Questions? Contact: [email protected]

09/05/2019
09/05/2019
05/09/2019
Hi everyone, a bit off topic but an important subject for me and my fellow admins. Could I have your vote? I am proud an...
05/07/2019
Organisasjonen Tilknytningsomsorg

Hi everyone, a bit off topic but an important subject for me and my fellow admins.
Could I have your vote?
I am proud and humble to have been nominated for the generosity prize for my work with the organization "Attachment Care". The organization want to be a support for children and parents in the "invisible poor" group; There are many children who are not allowed to attend leisure activities or go to a birthday party because parents have to prioritize buying dinner.
Please see the attached link, sadly its only in norwegian but I will post a translation in the comment field. Push the red wide button below the text to vote. The price I can win goes in full to the organization.
Thank you! Cecilie

Tilknytningsomsorg arbeider for å fremme positivt foreldreskap, hjelp til utfordringer med søvn, støtte til foreldre som har det vanskelig og fokus på barn og barns oppvekst. Hva er så tilknytningsomsorg? Tilknytningsomsorg baserer seg på et menneskesyn som ser alle mennesker som likeverdige, ...

12/06/2018

🔊Any Arizona Clusterheads
wanting to meetup?
(everyone is Welcome, of course!!)

Please comment below w your name
& we’ll be contacting you after New Years!

11/09/2018
Timeline Photos
10/19/2018

Timeline Photos

A screwdriver through my eyeball: the true pain of a cluster headache
09/27/2018
A screwdriver through my eyeball: the true pain of a cluster headache

A screwdriver through my eyeball: the true pain of a cluster headache

Cluster headaches often top online ‘most painful’ lists, beating gunshot wounds, childbirth and amputation without anaesthetic. What is it like to have ‘the beast’ inside your head? One sufferer shares his story

Don't suffer alone! 🤕💜
09/13/2018

Don't suffer alone! 🤕💜

09/09/2018

Cluster Headache?

Don't suffer alone!

Happy Monday!!🎉Lets DO this!!💜🤓
09/03/2018

Happy Monday!!🎉
Lets DO this!!💜🤓

#coffee

Cluster Headache Community
08/31/2018

Cluster Headache Community

Cluster Headache Community's cover photo
12/31/2017

Cluster Headache Community's cover photo

Cluster Headache Community
10/05/2017

Cluster Headache Community

09/15/2017

ARIZONA Clusterheads want to meet up?
Message me- or, join ARIZONA CLUSTERHEADS here on FB!

Cluster Headache Community
09/13/2017

Cluster Headache Community

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Mesa, AZ
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Comments

Got this tattoo to be a way to start talking and explaining what Cluster Headaches are like and so far as start small dialog with a few people I never would have talked with normally and help explain it to those I couldn't find the words to explain it to before. Side note: I'm aware of the errors in the tattoo and am going to get some touch ups done on it.
A small study has shown promising results using GHB (also known as sodium oxybate) for chronic cluster headache.
Hi, everybody! Can I use 5-HTP, L-triptophan and Gaba if I have CH? I want to treat my mood and sleep!
Does anyone here use L-triptophan? Is it good for CH?
Good afternoon, guys! I have been quarantined at home for 9 months. I don't go out for anything, after all here is Rio de Janeiro, Brazil, and it seems that for the vast majority of people the pandemic is over. As I have cluster headache (and still in treatment with MM) I'm a person in the risk group, so I should avoid getting COVID-19 as much as possible. My current problem is that I have been at home for 9 months and I feel that I am getting depressed. I read some texts on the internet that say taking anti depressive is very bad for those who have CH and deals with tryptamines. What do you know about that? Is there a class of antidepressant that people with CH can take without harm? I talked to 4 psychiatrists in Rio de Janeiro (my city) and none of them knows about Cluster and the dangers and side effects of combining tryptamines and SRRIs or SNRIs. Can you help me, please? (Feel free to comment the post or inbox me!)
Since 2014 I have been experiencing a cluster headache. January last year is awesome I took 2 glasses of red wine miraculously never experience again until this moment. Try to take red wine, and thank me later :)
Hello, I have had my first Cluster Headache in 1980, I still remember distinctly the time and place, it felt like the pain of a brain-freeze above my right eye but went on for 20 minutes or so. For the next 10 years I kept getting cycles lasting a few weeks 4 to 5 times a year, the pain was manageable although nasty. With time the pain got stronger and the duration longer, it was hell and that forced me to look for help. I was misdiagnosed, no surprise, and got no help. In the mid ’90 the pain and duration kept increasing and I found myself incapacitated during a good part of the cycle although the frequency of the cycles eventually diminished to twice a year. I given up on doctors by then given that I also didn’t have medical insurance due to pre-existing conditions. Finally in 2008 I stumbled on an article on line on Migraine and CH and realized that I was suffering of CH. Through Obamacare I finally got insured and eventually I found oxygen and later Sumatriptan and since I have been able to manage the awful pain 80% of the time. Only a few weeks ago I thought to look for a CH group on FB and I am grateful to have found this one. Before joining this group I had never known anyone suffering of CH. It is very supporting to know I am not alone, read everyone stories, suggestions and tips. I got a better oxygen mask through this group at Clusterheadaches.com a real step up from what I used. I also found out that psilocybin may work, ironically I use to be quite a stoner as a teenager, I could have avoided decades of pain had I known! I have tried in the last few days micro-dosing although I was near the end of the cycle so I can’t say for sure if I am pain free because of the micro-dosing or the cycle ending. I am sure CH will give me an other chance, thankfully as I age the gap between cycles is growing, I get them now every 18 months. Thank you all and above all thank you to the administrators. CLUSTERHEADACHES.COM Cluster Headaches Worldwide Support Group
Has anyone tried Nurtec? Its for acute migraines but my neurologist put me on it until with sumatriptan until I get my oxygen. It is a 75mg dissolvable tablet. I've taken 3 so far and only 1 has seemed to work. It is very expensive and I only have samples for the time being and don't want to spend an arm and a leg if nobody seems to get any relief from it.
End of cycle 💪 Thanks to everyone for your support and advices
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Is this page still alive ... have been a sufferer for 30 years ... since I was 12 I’ve finally been drove to a point in my life where living in constant fear of a cycle starting has drove me to a breaking point and now with quarantine I have a lot more time to ponder if it’s really worth it , have tried sooooo many rx and doctors neurological professionals and psychiatrists !!! Please I need some relief from this monster I live in fear of
Does anyone out there know about the hot water method? Maybe it only works for me but at onset and during one that would be considered mild on the CH spectrum, super hot shower stream on the eye totally relieves some of the pain. The steam in the nostrils is a bonus as well. Of course its not nearly enouph but it helps a bit. Have any of yall tried this?