The Cluster Headache Support Group, Inc.

Cluster headaches and the effects it have over my life I have tried everything the emergency room is my only outlet to have relief from this monstrous experience I see I am not the only one with this experience my started in 2009 and it been hard this week and it's very overwhelming I am hoping it's seasonal this time because I can't be able to do my job and that stressful by it self no job and insurance pray for me and the cluster family

...when you have cluster headache you feel ALONE...having folks who "get it" is many times more important than any medication. the folks in this family get it...and want to help...

I can't sat enough about this group. I am a lifetime headache sufferer. Diagnosed with clusters about 6 years ago. I thought I was going to die before I was diagnosed. The ERs and doctors don't know how to treat this disorder. This support group helped me with the resources and morale boost I needed to get through my darkest times. I am on a treatment on the path to pain free days. I am forever grateful.

CHSG is a lifesaver. I've had cluster headaches for 16 years, 15 before finding CHSG. The support, information, research, and education I found through their website and Facebook support group has completely changed the trajectory of my disease and my ability to cope with this debilitating condition. I owe my life to CHSG!

I am thankful every day for this group! I would be totally lost without the valuable information provided and suppoet given by all of the members. We all support each other like a family and look out for each other. And the medical information and support from CHSG is great! Thank you so much CHSG for your help nd guidance to me and all of us through this awful illness we have to deal with.

Over the years, this group has grown and has provided a safe place for people to come and get reliable science backed information. It is a very supportive and encouraging group that you’ll find great diversity in people and walks if life that CH has affected. A common ground we all walk on brings us together for an understanding that nobody gets except the CH sufferer or supporter of a CH sufferer. Someone is always there and encouraging you to keep going, don’t give up and to try something different or to just bend an ear. With a global outreach now, it seams someone will always be near or have something in common with you. You are never truly alone here.

For seven years I've suffered alone until I found this group. That alone helped me in ways that only a sufferer will be able to undersand. Helping me get the right mask for O2 and a genuine understanding of how I feel when I felt completely alone. I have no doubt that this group has saved people from suicidal thoughts as I know it has for me.

I can't begin to say what this group has done for me. It's filled with the latest updates and findings on both CH and treatments. It sorts out all the nonsense remedies It has provided me a support system. A group of others who can truly understand what I am going thru. Clusters can make you feel alone and isolated. I no longer feel that way. It's given me a network of friends and support that I never imagined I could or would have. CHSG has literally saved my sanity and my life. I've had cluster headaches for 29 years. I have always felt alone, afraid, and honestly like a freak. I've never felt any of those emotions since joining CHSG.

This group has taught me so much about this disease. I have received so much support to pick me up through the bad days and a place to laugh in the good. I have met some great people and glad to call them friends.

This group provides a great place for people to come seeking support and to know they are not alone in the world, with this rare and painful disease. That someone else understands what they are going through. Virtually any time of day when you need a friend, an ear, advice, you’ll find it here!

CHSG is an amazing support group. I have been a member since 2014 and am amazed at how much I continue to learn from fellow patients, supporters, and neurologists, specifically headache specialists. Members are like family to me.

CHSG has helped me in many ways. Sending me a better oxygen mask when I didn't have the money, information on new treatment options and lots of support. Before finding CHSG, I was misdiagnosed and dealing with doctors that didn't know how to treat CH.

I've suffered from cluster headaches for 11 years. Until I found CHSG I had no idea there were others. Now I have a supportive community that helps each other at our lowest points and celebrates our pain free days together. What anyone else would think are mediocre every day things like sitting through a movie with both eyes open and pain free is a huge deal and sometimes our best friends dont understand but we do. We are stronger together and I am happier and grateful could not come close to describing my feelings about this group. I made it through another cycle when I wasn't sure this time I would. They saved me.

CHSG is an organization that you can’t put a price on. They help people who are desperate and at breaking point because medical science can’t fix them. Not only do they improve everyone’s life who is suffering, they are truly saving lives by helping them find the right medical professionals and by offering support to those who can’t take the pain and disruption anymore.

CHSG is a caring, supportive and informative organization. They always have up-to-date information to share and keep the members informed of any trials that are recruiting. The redesigned website is packed full of useful information and clearly states the mission.

I have suffered from Cluster Headaches for 7 years,had to wait 4 years for an official diognosis.
I have paid privately to see Specalists without succes.
Since I joined this group I have gained huge knoledge and incredible advice and peace of mine that We are not alone and the great people here are there to help eachother even though they are suffering.
Thankyou so much.
Kevin Francis

At first I thought this group was so supportive and helpful. Occasionally I watched them ban someone for subjects they didn’t like. I said nothing. Thought they had done something wrong & probably deserved it. Unkind of me, I know.
Then they wouldn’t allow sufferers who didn’t speak English to post, even though there is auto translate feature and other sufferers who spoke their language. Cluster Headache is not exclusive condition only for English speakers. I still said nothing, even though little things I saw bothered me.
Then they banned me, without message or notice, for talking about Vitamin D3. Yes, you heard me, D3. No warning, nothing illegal. The same D3 they have listed in their own files.
I understand and respect rules for safety, but I can not abide censorship. They have a section justifying and denying censorship in their files. I wondered, at the time, why they felt the need to justify themselves & deny it. Now I understand why.
Sufferers need to toss ideas around with painful, often chronic, conditions. Some work, some don’t. Not every idea is automatically illegal. In my opinion, if rigid oppression of ideas and pharma group think is what you are looking for, this group is for you. If you need kindness without judgement or censorship, I’d look elsewhere. Ty for reading this and may you be pain free.

This group is ruled with an iron fist to the detriment of its members. I was extremely involved with the community as it started off, but I left voluntarily after seeing the following: censoring of legitimate treatment options, verbal abuse of members who don't toe the official line, incorrect information, people being booted from the group for being suicidal (CH are nicknamed "SUICIDE headaches), and more.

Furthermore, I was told directly by a former board member that they work hard to clear out negative comments from this space, creating a really stilted impression of what they do. For every person they have helped, it seems they have booted three more. There are no firm guidelines on what will get you kicked out; it is purely at the whim of the board. This is their prerogative, but it's also something I feel that incoming members should be aware of.

Cluster patients need all the help they can get. There are other places to find it if you have found yourself at the bad end of this group, which it seems so many do eventually. One thing that has amazed me is how many long-time group members and even board members ultimately come to see it as a really toxic place.

Undoubtedly, they have helped people. For myself and others I know with cluster headaches, the excess stress this group causes along with its unwillingness to discuss legitimate treatments that fall out of their "approved" list, make it wholly not worth the trouble.

Just a godawful group who blocks any and all minor dissenters. Have probably killed people with this practices. Stay away. Otherwise, believe me, eventually you will be kicked to the curb. The former president left a terrible mark on this organization.

I have been suffering from Cluster Headaches since 2013. I am a working professional in the medical field, a wife, and a proud mother of a very active toddler. Very recently I found CHSG and am immensely greatful that I did. It gives you a community of people who are going through the same struggles of daily living. They offer a wealth of information and an immediate connection to resources that I was unable to find after years searching on my own. Most of all when you are living a life day in and day out full of pain. It is easy to get overwhelmed and feel alone and as if there is no one out there that can possibly understand what you are going through. CHSG gave me that. Continues to give me that. A connection. Let's me know that no matter how bad it gets there is a place that I can go for support, encouragement, and guidance.

One of the best cluster headache groups I've found. Extremely informative and very helpful. I would recommend this group to anyone who want to know more or receive help for their cluster headaches.

Hi, I have been suffering from cluster head aches for as long as I can remember but I only recently discovered CHSG. The support and information I have received from this group has been awesome to say the least especially at 3am when the beast has kicked in. Just knowing there are other people who understand what you are going through is a great help and long may it continue.. Thanks CHSG .. Nick (UK)

Before I joined this group, I had google. That's it. No one could explain what was happening to me. I self diagnosed, and joined this group to find many knowledgeable people, and open arms and hearts aplenty. I learned everything I know about my condition here first. This group lead me to getting a diagnosis after 8 years! Thank you for all that you do!

When I was diagnosed with Chronic CH even my doctors didn't really know what it was or understand that amount of pain I was going through. I felt scared and alone until I found this support group. I feel safe, supported and no longer alone and in this fight. It has pulled me out of some dark places and has truly been a life saver, I don't know what I would do without knowing I have this amazing support group behind me.

Have learned so much about this horrible condition that my husband suffers from, when most people don't know much about it. Forever grateful for this support group!

CHSG has been an incredible source for myself and my personal supporters to enrich my life with tips, advice, and general emotional support as I've struggled with this disease. The members suggestions on any and all of the ways to cope and handle life have been nothing short of a true blessing as I continue to cope with this in my life. I am so thankful for this group and all of the members.

CHSG provides the support that so often is missing from family and friends. It relieves the isolation felt by so many with this terrible condition. By being able to express feelings and fears, many of the group have gained the knowledge and confidence to obtain proper treatment and live a better life.

Imagine a world where you contract a rare disease. That world is much different than the world you live-in. In your world, you get sick, go to a doctor who knows you and your illness. You discuss treatment options and you are on your way to a better you. In the rare disease world, finding a doctor who knows the illness and can identify treatment options is a challenge. Sometimes, just finding out information about your illness can be daunting in the "rare disease" world. This is where the "Cluster Headache Support Group" helps. They have experts and a worldwide community that educate and inform people with the rare disease known as "cluster headaches". In addition to education, CHSG partners with the "healthcare" community to support studies to further the cause of finding treatment options, and one day possibly a cure. They are the "voice" in the darkness that help people in great pain, afflicted with this disease. They participate in hearings to Congress for research dollars to further study the causes of this disease. While keeping their fingers on the pulse of the healthcare community to pass along any and all information to its members. I was diagnosed with cluster headaches in 1998, chronic in 2011. I have been unemployed disabled since 2012. They were the "only" voice to help when other could not. Helping me to sift through the language of healthcare and interpret the jargon. I don't know where I would be without there guidance and compassion.

I honestly don't know what I would do without this group. So many doctors are clueless regarding Cluster Headaches, so to be able to talk to people who understand and know what you're experiencing is so incredible. I have learned SO much from the people in this group and other ways that I can help manage the pain. Not only is this a source of invaluable information but it's a source of incredible support and understanding. I am so beyond thankful for this group and the people in it.

I love CHSG. I am both a member and a moderator of the Facebook support group. CHSG has helped provide me with support, knowledge, refuge and friendships.
CHSG has done so much to help raise awareness for cluster headaches and I am excited to see what's around the corner.
CHSG is awesome.

It is so good to know I am not alone and it is so great to know what everyone else is doing to combat it.

There really are not any words to describe the help and support CHSG gives to everyone of its members, it also helps to connect people who are suffering this horrendous condition with each other. I will never be able to thank Chris Hannah enough for founding it, after my initial diagnosis of CCH I really had no idea of treatment options or pathways to take to ensure I got the right treatment CHSG provided all of this and more. The Admins work tirelessly to help keep it a safe environment for sufferers to visit, whilst also being a mine of information and support themselves. Thank you so much my clusterheadache journey has been made much easier by you all.

When I was diagnosed with cluster headaches this past fall, I was at the lowest point of my life. I was experiencing debilitating pain and was given a very bleak picture of my treatment options. If not for finding the Cluster Headache Support Group, I'm not sure how I could have coped. The wealth of information they've shared with me has helped me to understand my diagnosis, and to weigh the benefits and risks of all available treatment options. I feel empowered, rather than helpless. Beyoncé impacting my own health, CHSG has helped me to educate my family and friends through their awareness video. They are the absolute best resource for coping with cluster headaches, both personally and as a support person of a sufferer.

This support group is suppose to be for people with cluster headaches but has turned into a forum for migraines. The majority of the group appears to have cluster migraines and most of the posts have references for people with migraines and not clusters. The admin is even posting links to her blogs which is migraine based which she gains financially by how many people she gets to view her blogs. If someone is obviously referring to their migraines such as 17 hours or 9 days of headaches no one corrects them that cluster headaches don't last that long. They also talk about triggers that are migraine related and not cluster headache. The admin even said in one post that cluster headaches have very few triggers yet no one says anything when a long dragged out post on triggers is made. They really need to change their name to cluster migraines as that is the information that is being supported in this group. As a person with only cluster headaches this information is very confusing to say the least but also I honestly don't feel like I fit into this group at all. I hate to see new members getting the wrong info regarding their condition but that is exactly what is now happening in this group ever since the former admin stepped down. They need to keep migraine information out of this forum or change the name.

I have suffered with cluster headaches for 14 years and still going. Without this group I would few hopeless and alone in this. Knowing there are people out there who suffer from the same pain help me overcome and be strong and hang in there. Admin has been very helpful as well as the public helping me and guiding me through it all.
Thanks again

Hello I am episodic, was diagnosed this past cycle by a neurologist with CH. They started about 8 years ago and come every two years, lasting around 8 weeks. The ClusterHeadache Support Group has helped me a countless number of times and would love to donate to this nonprofit. Thank you all for your hard work.

This group encouraged me to look at different treatment options and work with my doctor and neurologist to try to find the treatments that would work best for me. At a time when I was at my lowest ebb, it was this group that helped me work through that too. I will forever be grateful for that.

Best support group ever for people with the worst headache disorder ever. So glad I found them. Might have literally saved my life.

I have met some of my closest friends in this group, need I say more. People who are there for you anytime day or night, and good or bad times.

Best non profit group ever for cluster headache survivors. So caring and informative. Before this group I was ready to just lay down a quit, I literally had no fight or hope left. Just having people that understand and push you to continue to fight for some normalcy in life makes all the difference in the world. I am standing strong and fighting the fight because of this group and the wonderful people it is made up of.

I was so isolated before I found this support group. I didn't know anyone with cluster headaches and I just figured my only option was to suffer in silence and try and deal with the pain all by myself and all alone. Everyone from the administrators to the other participants have been so helpful and so welcoming and I am picking up tips and treatments to try. It is like having a virtual advocate who can help and coach with problems and issues. I'm so glad to have found such a support.

This group operates 24/7 including holidays and weekends to support individuals with clusters and their families. They provide emotional support as well as educating the community about these.

I have been a chronic cluster headache sufferer for 4 years, and this group has changed my life in so many ways. starting off with the great advice given by our administration. All the way to being able to talk to others with the same condition. I would not be as hopefull as I am if I didn't have this group. It has opened my eyes to opportunities, and hope that I would have thought never existed. This group has literally changed my life forever .

CHSG is truly invaluable to me and so many others. The support, resources, information, compassion etc are one of a kind. This is a disease with no current cure that brings people to their knees in desperation for relief. I love how CHSG has continual contact and meaningful interactions with leading experts/pharmaceutical companies, hospitals, physicians etc who are working to develop treatments for us. You can also find plenty of supporters as part of the group who are there trying to soak up every bit of information they can to better support their loved one who is affected with this disease. It's just a well rounded, meaningful group with REAL purpose. The founder, Chris, and other admins go above and beyond to actively support each member regardless of their level of need. The atmosphere is warm and inviting. They are constantly posting suggestions, references, real information, trials, concrete data, and just the most kind words that we need to hear in our darkest moments. They are involved and it's easy to see how much they truly care about each one of us. Sure there are other groups out there. However, I've discovered many of them discuss and even encourage relief without limits. Meaning, things that are not legal or ethical, or safe etc. We ALL know the desperation for relief, but the last thing I want to do is jeopardize my family, my health further, and my life by trying something that is at best extremely risky, at worst, illegal. I appreciate a group that is making meaningful strides in obtaining effective, legal treatments for those like me. I have been blessed immensely every day since I decided to join CHSG. If I ever met a fellow sufferer, and I sure hope I never do, the first thing I would do is direct him/her to CHSG. It is literally a life saver with a wealth of helpful information comprised of the absolute most caring individuals.

All I can honestly say is this group has been a total godsend to me. Without the support I don't think I'd have coped with clusters at all.
I can not recommended this group enough.

Being apart of this group has quite literally saved my life! I had attempted to take my life in the summer of 2015 and then found this support group. What Chris and all the others have created here is simply amazing. It's a safe place where we as cluster sufferers can go to get advice (medical and personal) with no judgement at all, because we truly know what each other is going through when no one else around us can even comprehend or fathom the amount of pain that we endure. I'm a chronic sufferer and thank God everyday that I found the cluster headaches support group!
Thanks to Chris and all the others involved, I still am here breathing and staying optimistic that someday we will find a cure or at least a way to tolerate this debilitating neurological disease.

Awesome support group! It is nice to have somewhere to go where you know your pain is understood.

This group is quite honestly a life saver. When dealing with something rare, and often isolating, it is beyond helpful to have a place where the experienced can interact with the novice as it were. One of my favorite aspects is the professionalism I've seen here. All to often we are bombarded by patently goofy ideas from well meaning people - it is a Godsend to have a place to go for real information. And, beyond that, these are fellow people in pain twisting that pain into something productive. It is inspirational, and I hope to add myself to the ranks soon. If you're in the habit of "looking for the helpers" - they're here. They have ice packs on their heads and are dragging o2 canisters, but they are here.

I am the wife of a Cluster Head, and even I have found support in this group! I was so frustrated trying to research every piece of information on my own, until I joined... They have been nothing but helpful and patient with my questions, it's great to hear from other people who actually understand what my husband is going through!

This group is amazing! Very informative. A group where people offer support one day, and receive it the next. It has been a life saver for me. Going to a new doctor fully armed with good information has changed the way i manage my medical treatment. I no longer feel alone!!

I've been a member of GHSG for years. It offers a space which is warm, friendly, informative and truly supportive. I've seen so many members arrive at times of real crisis and find comfort and friendship there. A really valuable group

When first diagnosed this group was my lifeline to sanity. It helped me find others who could mentor me, answer questions and find the tricks I needed to keep my sanity as I waded through meds, O2, the healthcare and insurance system. Now as a longer term member I've made friends and kept up on the research which I bring to my providers. This community is my lifeline to managing this horrible disease. I have hope because of it.

CHSG is the BEST group around! I've learned so much, on how to deal with the clusters & I have made some life long friends on there as well!!!

What a terrible group! You can be a member for years and years, put your blood sweat and tears into helping the community, and the moment you say "I disagree," the president sends his attack dogs on you. You will be eviscerated in public, humiliated, and then kicked to the curb. I wouldn't be at all surprised if we have lost people to these terrible practices, which have no place in a support group for "suicide headaches." CHSG's practices have the potential to be life-threateningly dangerous to those in particularly vulnerable spots with this condition. Do yourself a favor and stay away. You will find more help elsewhere.

I would be no where without this group. Ive learned more in it than from some of the doctor's I've seen.
Everyone is so supportive! I love that!!

I suffered from a chronic cluster headache for over 3 years. I've had them the past two years intermittently. Which still sucks but is better than no relief. This group was helpful. First, just to know that I was not alone, was comforting. To be able to talk to and get input from people who understand is a great relief.

This group is so amazing, so awesome and very helpful. I found them in January. I been a CH for 13 years and this is the first group that truly and passionately understands me. We all are one and we all go through the same thing. HATS OFF to the leaders. Thank you for all the information you provide. Hope you get all the help you need.

This group is so helpful, gives informative answers and help to people suffering from Clusterhead Attacks - and seeing the posts - you realise you are not alone in this miserable world of cycles. It is a fantastic support group

I have suffered for over twenty years with Cluster headaches. This site has helped me understand newer proven methods and tried and true methods for treatments. At times it does feel like a family and some of the names become familiar over the years,this becomes helpful as you learn who is there for you in a great time of stress and pain. Newer people to the site sometimes follow advise because of desperation caused by the pain.Not tried and true.The site is here to help,not push a method of treatment. The advise can be calming in time of need. Continue the fight…Don't give up!

Very helpful site, full of friendly people and useful information about the condition

I have suffered with cluster headaches for too many yrs. In my community I have NEVER met another person that has experienced the pain, stress on the job, or with family stress during these horrible horrible headaches. It's wonderful to know whatever you say is understood. This group is very supportive which was very nessessary in my time of need. Thank you very much♡♡♡♡

Amazing helpful informative site unable to live without the support I have

I suffered ch for 12 years ,no meds, isolated due to people,gps etc not understanding ! Since joining this group I learnt about o2 and sumatriptan injections and the feeling of isolation has gone ..I have many friends on this site that don't need an explanation of the pain. This site has saved my life . Thank you x

I have been suffering with CH for 14 months now. I recently found the site as I was looking for anything helpful or hopeful about what is going on with me. I was grateful to find there are solutions I was not aware of. I now feel better informed for when I go for my first neurologist appointment in 14 years next month. The information on CHSG was clear, easy to read, and informative. I was also able join their Facebook group and actually talk to other people...just knowing someone else is out there with this kind of thing gave me comfort. They are helping me in so many ways as I struggle to find a solution for my head. Xo

This group has literally changed my life. I have had CH since 1983. I felt very alone and desperate for releaf.
The support and knowledge from this group is AMAZING and a life saver!❤

Until I found this group I thought I was alone with these awful headaches. I have found some of the most knowledgeable and compassionate and upbeat people here. I have found so much more information and tips than I have ever received from my Doctors. It is a great sight...
Mary Ozanich Johnson

I was dismayed to see that there have recently been many negative reviews about CHSG on this site. Those reviews do not directly address the issue that those who were dissatisfied felt that way because CHSG is devoted to discussing treatment options that are based in scientifically sound research and not those that offer unproven and often false hope to sufferers. It is a feature of this disease that sufferers will seek any remedy at all, so it is natural that some people will take it very personally if their choices are questioned. However, that does not mean that a non-profit that is devoted to a medical issue should be required to entertain any option that someone brings up. That has the potential to become extremely dangerous, especially to such a vulnerable group of relief-seeking sufferers as us. Recently, someone who claimed to be a sufferer on the Facebook page said he was leaving the group because he "found the cure." One of the CHSG administrators posted very soon after that that this was a ruse to lead us to a website where the "cure" could be purchased. The sad reality is that THERE IS NO CURE. I am grateful that the leadership of the group is doing their best to keep snake oil salesmen away from us. They keep their heads even when we start to lose ours. I invite anyone on this site to read the negative reviews closely and take note of the consistent theme that the CHSG is a group that is closed to those who insist beyond reason that we all take their non-scientific and potentially dangerous viewpoints seriously. That is a universal positive, and as far as I'm concerned, those negative reviews read like 5-star reviews to me.

I am so very grateful for The Cluster Headache Support Group, Inc. I'm finally at ease with a group of other people that are going through the same illness as myself. This is a disease that takes your life away from you in every aspect and leaves you feeling helpless and very alone. Your family and friends try to understand, but they really don't, and the medications that a person must go through will leave you on a roller coaster that is a much larger ride than anyone is prepared to go on. To finally find a community of people that share the same experiences that I am going through is a breath of fresh air. Even on a day that my pain has me bedridden, to be able to talk to someone going through the same thing that understands how I feel is reassuring that I'm not alone and other people are fighting this demon.

I've suffered from Chronic Cluster Headaches for 6 years and the CH Support group has been extremely helpful. They are always there when I need them and are very understanding about a condition that most people know nothing about. I am very thankful to be able to have others out there to relate to exactly what I'm going through.

I need more stars!!! I've suffered with Ch for 21 years and have never had proper treatment for them and have just had to deal with them! I had just started another bout and I joined this group as a last resort to find some help and oh my did they help. I have now due to the incredible wealth of knowledge on this page got the treatment I need and more on the way and am being referred to a neuro. If you ask a question minutes later there are loads of responses helpful and caring and it's just incredible, I feel I belong to a family here! The genuine love and support for everyone is just amazing. Thank you for turning mine and my families lives around now I can control the beast I can start being the same mum and partner during my cycles too I really can't thank you enough X

On days when I feel no one understands, all I have to do is hop on the computer and I know I'm not alone. I am usually pretty quiet and I hate asking for help but I have 0% doubt about getting it if I reach out. We are a family and we respect one another. It's nice to have that support.

Hi
As a support person I have found this site invaluable. It has provided me with information to help my partner and support when I feel absolutely hopeless.

It is one of the best support sites I have found and I do a lot of research to try and understand this dreadful condition. I have also seen the good this site does for others!

I thought I was alone. I certainly felt alone. But thanks to this group of people I know I'm not. They've held my hand through hard nights and days and we give eachother hope.

I joined this group just 3 months ago. With that short period I have learned so much. I do not feel that much guilt because I have this illness. The support you get is amazing and genuine. With little known about this illness, to find people knows what you are going through is a priceless gift. I owed this group soooo much. Because of this group I became kind to myself. God Bless!

I am recently diagnosed with Cluster Headaches and I don't know what I would do without this amazing support group. They have helped me through my darkest hours. I love this group!

Cluster headache support group is the best support group on the net, period. Anytime I have a question or just need someone to talk to they always have my back! Love them!!

I'm a long time sufferer of cch. I can't thank this support group enough. I honestly don't know where I would be without the support and knowledge they have given me . From the bottom of my heart,I thank you . Deb x

Would be lost without this site. The admins have helped me so much with the information on this awful illness and lovely fellow sufferers sharing their experiences. Great support is given to everyone.

For over two decades I have managed to survive, alone with this beast. In the year passed however I finally met a fellow CH sufferer, and found this support group. A big thank you for the informative help and advice. The strength I have gained from knowing I am not alone in this situation has given me a great deal of support.

I've lived with CH for over 17 years and always felt alone. My neurologist recommend this support group and I'm so glad he did. I know I always have someone there no matter what time of day or night, who understands exactly what I'm going through. Massive thanks to Chris & all the admin

I just joined this group just this year as a wife of a CH sufferer. We have found some very useful information from this site and love the support everyone gives one another.
Thanks to everyone that's made this site possible..

As a Chronic cluster suffer this site not only has shared many of other suffers with me that I can talk to and learn of the things that have helped them because everyone who has these clusters know not one person reacts the same as another to medication. On top of that I have shared this with family and friends so they can see that I am not alone in this and when they see someone posting the exact same things that I go thru . It shows that it really is real and makes them more aware.

This support group is great! I've been suffering with a form of CH since having a brain tumor removed in 2012. The group has been very understanding, provide lots of great advice and emotional support.

Amazing support through dark times... Thank You All

Myself like many others have had this dreaded condition for many years before finding this group and being able to discuss and share with others what we are going thru. Early on I would do my own research and during this time felt very ALONE in my quest to take on the beast and then discovered this group. It's a place where all can share experiences, provide others with much needed support and I'm sure in most cases learn more about CH's then most will ever learn from physicians on a verity of medications and treatments that are available providing a great head start with information to help decide a path for choice of Dr's and best chance for relief. That alone is priceless for many. Chris and the admin team are a very knowledgable companionate bunch, dedicated to helping others and deserve much respect and gratitude for their efforts.

I've had clusters since 1977 and was diagnosed in 2002. My wife found this group, at first I didn't want to talk about it, but my wife would tell me about conversations going on and they were enlightening, so I jumped on board. We share our experiences, what works what doesn't, the compassion for the condition we share means the world to me

I was completely in the dark with lack of both support and information. In the very short time I have been in this group I've had overwhelming support and advice. The people are caring and understanding. The pain we suffer on a daily basis is debilitating and if you don't suffer with chronic cluster headaches( and I hope you never will) you could never understand. Great group of people all with the strength to go on. Suicide headaches have satistics. And we are survivors. Stay strong.

I have been a sufferer of cluster headaches for over 20 years. Until joining this group I felt totally isolated. The support has been awesome!

With the support of this Charity, I still have my life and family... Without them I would of taken my own life because with this illness sometimes you just don't want to survive. Thank you so much for been there for me.

Have to be honest here this group has been more than helpful in managing this nasty condition that very little is known about. It's sharing people's coping mechanisms and their experiences with medication that will one day help to find a real cure for cluster headaches.

The cluster headache support group has helped save my life. Living with a rare, extremely painful condition is extremely isolating and depressing. This group provides quality information and a support network that "never sleeps". No matter what you are going through, you are never along and untested methods will not be recommended.

We have been a part of this group for a few years. We have found them to be informative, sympathetic, and compassionate. We support each other and gain support when we need it. This is my go to place when ever I'm in need whether it is personal or something in general.

I've suffered for 21 years and finding this group was the only thing that kept me sane. It's legit,genuine, and the support I top notch!

I am a new member to the group. I have a daughter who suffers from cluster migraines and I have found this sight insightful and has given me a much better understanding which in return helps me support my daughter.

I've been a Chronic cluster headache sufferer for 10+ years, member of a Belgian group already and recently became a member of The Cluster Headache Support Group as well, looking for as much information and support as possible, not only national but international. This group has (as has the Belgian group by the way) wonderful admins (sufferers themselves) who put a great deal of time and effort into surveying the site, watching closely that the rules aren't violated, and the rules are simple: "be nice and supportive, and don't bring people down or give false hope". This group is very empathetic and informative and humor is never far away either. I am honored to be a member.

I have been suffering from cluster headaches for seven years now. CHSG is my daily source of connection, information and support to help me in this brutal battle. The information on treatments and coping tools is awesome! Many of the folks there have become my friends. I find support and encouragement every time I look to CHSG.

Can't praise this group high enough. An incredibly valuable asset for those that suffer. Keep up the good work!

I am so greatfull for ch support gp, as a sufferer for 8 yrs and I was in the dark for 6 of those years, I was suicidal until I finally got the correct diagnosis.
When u get the diagnosis then u would think great I can finally get help and support from the doctor hospital what ever u had to do, but what u realise after a short time is there is no awareness no information no doctors with experience to help you.
So as I went thru a few diagnosis before they come to chronic cluster headaches there is always that doubt what this is not what I had, it must be brain tuma or something as the pain was so excrutiating, so when I finally come across this sight on face book to my surprise,as I had searched everywhere for info but I got it on Facebook, I could finally speak and read other people's experience with this terrable I'llness, and finally u can relax a little and accept what this is the Illness u have and there are other people who understand, this sight has helped me more than any doctor and the support I have witnessed from the Cch support gp during life and death situations is amazing , this sight is so much more than just a support gp it is information for people who no nothing yet about this illness and trust me those times were the scariest for me, so I thank this sight for being here, and if I didn't find this sight I would still be in that bad place of thinking the doctors r wrong again or would I even b here thanks to the Cch support go

There are so many who suffer from this condition, yet the medical field is sadly lacking in information about it, particularly when everyone responds so differently to the treatments offered, whether they be medication, supplements or procedures. To have a place to go to get information, share stories and most of all support one another is fantastic.

One site shouldn't bash another site. As you have said, you're not the site for all CH sufferers. Some sites offer different things than you do. That's not bad, just different. Don't bash other CH sites. It's not a competition.

At the time I joined this group (now over 2 years ago) I had suffered from episodic clusters for over 35 years. I've learned so much since the day I joined. This group is a godsend to me. The caring and knowledgeable people that run this group as well as those members that participate daily are worth their weight in gold.

I have been part of this group for a while now. After suffering for 19yrs and being passed from pillar to post...I have had several phone calls and messages with this group and from that I have eventually got into the Walton centre Liverpool...I could not be more over the moon if I tried. They have been so helpful, given me so much advice and been there every step of the way...

The group has been extremely helpful, providing valuable information at a very stressful and worrying time in my daughter's diagnosis of cluster headaches. I am grateful for all their time and energy spent in helping others with this awful condition.

Being able to talk to people in the same situation as me, who understand the pain I go through, this site has literally saved my life

This group has helped me understand CH more than any doctor that I have seen. They are there when for you when you you feel like no one else understands. I have learned of things that can help prevent triggers from other members.

Thank You! I have learned so much from this site. And it has helped me to have people who understand what I'm going through. It's very frustrating to have CH. we need to spread awareness. I suffered for 3 years before I finally was diagnosed. Now I do my best to spread the word about CH. The CHSG is an important establishment that can save lifes. CH is deadly painful and people need to know there is hope.

This support group helps me daily and help me to share knowledge with fellow sufferers in a sane, controlled and private space. Thanks to all the work that do admins on the page/website. Previous bad reviews come from frustrated people without empathise. Well, screw them and keep on doin an awesome job.

I joined this group initially because I suffer from chronic cluster headaches. On November 30th, 2015 at approximately 5pmish, their "president" made a post about another Facebook GROUP, (not a non profit) alleging that they were purposely posting bad reviews on this site. Out of 46 reviews, 43 reviews were 5 stars. But the 2 non 5 star reviews were enough for him to post negatively about the other FB group, and added a link to this site to encourage members post reviews. Since I thought 43 out of 45 reviews were 5 stars, I simply asked what the big deal was, considering most businesses cant obtain that kind of high ratings. Once I asked, I was questioned, questioned about why I was in their group (had been for years). I was accused by their president of having "issues"...I was immediately told that they had no obligation to me or me to them and immediately was accused of having s bad opinion of them (which I did not at the time). I explained I had had a bad experience with one of the admins, and you know, everyone is human. I asked why we ALL couldn't come together since Cluster Headaches is such a debilitating disease. I thought, the more people, the more ideas, would lead to a better treatment approach.
When I stated I had shared my story (within this group, which everyone does) before, and my only issue was the pain, the president replied with "I was never made aware of any issue you had before now, but you seem to have many." He was on my friends list on my personal FB page and he and I had talked briefly in the past. I felt insulted and that he was attempting to discredit me. I also asked why a non profit support group would get so bent out shape over 3 negative reviews. At that point, other members were responding and trying to deflect by explaining how a non profit works. Since I'm the Vice President of a non profit youth sports organization, I do know how it works. I was trying to get answers as to why the president was so upset over 3 bad reviews? Their were several exchanges, mine were cordial, his not so much. I went to reply and i couldn't. That is because he removed me from the group without warning. If asking legitimate questions, gets you booted from a FB group, a) I really don't want to be there, and b) I feel badly for all the other members that may be to afraid to ask a question.
Their president was very rude, as was on of the female admins who sent me a private IM warning me to watch what I say...what??
Apparently, this is still happening to many individuals...individuals in pain looking for answers. I should have reviewed last year, but I'm tired of seeing people get harassed and hurt feelings.
Just as a disclaimer, I am in SEVERAL Facebook groups dealing with cluster headaches and facial pain. I am not an administrator of any FB group, I am not an administrator for ANY non profits dealing with cluster heads....I was just a regular person, a patient per se.
I still suffer from Cluster Headaches....since the age of 4, so about 37 years. All I want is a cure, or an effective treatment option.
I've nothing to hide - Candi L

I only put one star because that is the lowest rating i could do, low like the imbeciles that run your page. I would call it a nfo but it is not. You do nothing. Infact you kick people off the page when they require too much support. This page is useful if you want a generic list medications they tell anyone to use. In fact I will post one such message pasted below. Read it your self. I stand by what I say, if someone wants to argue or discuss the uselessness of this page hit me up my fb is nicole dineley and email is nicole duxbury@gmail.com.

Hi Nicole. I need to have a word with you about the recent posting you have been doing in the private discussion group.

It appears that you have been dealing with a lot of challenges all one on top of another lately. I can absolutely relate to that. It seems that for the last several months, along with dealing with Keith's cch, we have had a number of setbacks on several fronts. It seems that just as one crisis gets sorted out (OR NOT), another rears it's ugly head.

Frankly, for a while, I've felt like the Universe is out to get me!

But the thing is, while all of these stressors are amplified by the circumstance of Keith having CH, and many of them are directly related to his condition, they are not all really appropriate for the pdg.

Several members of the leadership and the membership at large have expressed concern for you, both publicly to you, and in private to the administrative team. Some of your posts have upset members, some to the point of leaving the group.

The CHSG private discussion group exists to provide information and support to CH patients and their closest supporters, but on topic. Certainly, we veer off topic at times (occasional injection of humor for example), but we try to maintain a consistent content.

The administrative team has, on a couple of occasions, felt it prudent to reach out to a member and offer guidance on how best to utilize the group in a way that provides give and take. One thing that certainly angers many is too many posts that clog up their feed when they are looking for advice. Some things are better left on personal pages. Another issue is that this is a group of people who are all dealing with profound pain and many issues that are either caused by, or compounded by that pain. I know people who have lost their families, lost their livelihoods, lost their homes, and lost their lives to this condition. And we certainly, as a peer support group, want to give people an outlet and provide support, but we also try to maintain a calm and positive space.

CHSG cannot be everything to all people. And so, the leadership puts forth a great deal of effort to make it a place where we can do a lot of good for the most people. But we are not professional counselors, and often find ourselves concerned that the needs of a member are more pressing than what we may provide.

As I said, I have been struggling quite a bit myself for a while now. But rather than fill the feed in CHSG with every one of the significant challenges my family and I have faced, I have also reached out to friends I have made in the group for some of them, family members for others, muggle friends for others, and used my own timeline for others. And yes, I have also used the group for support as well, because there are some things that ONLY THEY can understand. But the rest of it? Not so much.

It has been very difficult for me to write this to you, but I hope you will take it in the spirit in which is was written - a spirit of guidance and an effort to preserve your activity in CHSG participating in the give and take of support that we enjoy there.

This group is wonderful and supportive. They are on top of all leading research in the medical field related to CH. They keep each other supported, share insights and tips on coping and new treatment options ie combinations as well as provide a safe place to vent when overwhelmed.

Being able to connect with people who understand has given me the strength I need to go on. This is a great organisation.

I discovered The Cluster Headache Support Group through Facebook about 3 years ago. I've suffered from episodic Cluster Headaches for close to 20 years and nobody in my life understands the intense impact that it has on my life, not even my doctors. I've found this group to be filled with positivity, encouragement, and the most honest and caring people (including the fantastic moderators) I could ask to have on my side as a CH sufferer. CHSG is a valuable organization that distributes research-based medical information, informs us of medical trials and new discoveries, and we share the frustration about the lack of a cure for our condition. CHSG may have a "private" Facebook support forum to establish some privacy, but their advocacy goes far beyond just a Facebook group; there is a wonderful website www.chsg.org that has numerous resources for sufferers and the people who care for us or work with us so they, too, can better understand CH.

I have had Cluster Headache Illness for 41 years and am treated by the US MD who 1st prescribed oxygen for CH. I chose the Cluster Headache Support Group for compelling reasons: it does NOT offer medical advice, it is administered carefully to promote personal experiences of sufferers and those who care for people with CH; further, it encourages mutual support and discussion that adhere to the mission of raising awareness and advocating for best patient treatment and care; finally, the group is compassionate, and accesses and shares freely a database of current best-practices (from credible sources) and guides, and visual links to cope with CH and raise prospects for improved treatment and reconignition as disease - it's not just a headache - by employers, insurance cos, medical providers, as well as friends and family. CH is a rare disease. Historically, its suffereres are under-recognized, their symptoms undiagnosed for years if not decades. The group better than any I have tried is finally bringing CH to light; thus, for the fitst time in 41 years of having CH I no longer feel alone. I am supported and I hope support others through this peerless organization.

This group has truly been a life saver for myself and many others. There is an incredible amount of information available on their site for a condition that still has no cure.

Cluster headaches are the most painful debilitating illnesses ever. This site is full of helpful information as well as support and advice. Our family is so very thankful to the administrators and members of the site for providing this invaluable resource. Mrs Given

This is a very supportive and informative group. I would be a bit lost without them.

The cluster headache support group has been the most amazing addition to my life! When I was at my lowest point due to the horrific headaches, the support from them really helped. This group is honestly life saving and I truly appreciate every thing they do!!
Tina

A really caring community and a great catalyst to further research of a potentially debilitating condition where few other resources and answers exist.

I've only been a member for two days and already I have so many more answers than my current doctors are able to give me. Support and encouragement helps me know that I am not alone, and sometimes my dark thoughts are more normal that I believed.
This is a great group.

I have been a member for a while now. I have been a chronic cluster sufferer for ver 3 years. The Cluster Headache Support Group has been an excellent source of information and education. Members have been emotionally supportive in a positive manner. The administrators are very proactive and always encourage us to do our own research. They do an excellent job of directing others to material for review and do not attempt to influence anyone to their point of view. I have noticed a few occasions where members have become negative in attitude or comments and administration is quick to remind us to maintain a positive focus. I recommend the group HIGHLY to anyone associated with cluster headaches.

Honest, good information and very supportive. Inclusive and compassionate.

Cluster headaches are so severe that they eventually take over your life. You never know when they will hit, or how long they will last. Struggling to find a way to manage this illness can be very challenging. My personal experience lead me to fear being in public, alienate myself from my friends and family, and almost lose my job. People who do not suffer from this illness have no comprehension as to how severe the pain is, therefore lack empathy and understanding, when dealing with a person who does. I was very suicidal when I found this group and considered ending my life because I just couldn't handle the pain and suffering anymore. Feeling like I was alone only made matters worse. Sharing my experience, getting advice, and having others validate my frustrations, has saved my life. Yes, I still struggle from time to time, with the pain but at least I know I'm not alone. For that, I am eternally grateful! I have met some amazing people through this site, even if not in person, and all I can say is "THANK YOU"!! I'm here today because of you!!

Sincerely,
Winslow Ross

Tremendous support through some of the worst times of my life.

Great place to find info and comfort from other Cluster Headache sufferers. So glad this exists!♡

This is an amazing group of people who have helped me on many occasions. I have been struggling with cluster headaches for going on 12 years now and until I found this group I struggled to find things to help me cope and find medicines that worked for me. If it weren't for them I would still be lost and in pain not knowing what medication I should be taking or asking my doctor for.

This organisation and support is invaluable. It's guidelines and boundaries ensure that the friendly support is backed up with evidence based treatments. In some cases, this organisation is literally a lifesaver.

As a doctor and cluater headache patient I want to thank this group tu support people from all the world with this terrible condition

I have been a member of the Facebook CHSG support group for a few years now. I have only 100% great experiences from all the admins and other members of this group. They are so supportive in every way. I have seen these people go to extraordinary efforts to support others in dire need all around the world.. Thumbs up!!!

This group supports people with CH , an extremely painful often debilitating rare neurological disease . Even though it is has headache in the name it is anything but a simple headache. For many people finding a group such as this is a lifesaver - knowing they aren't the only one suffering with such an ailment. Sharing new knowledge and education about what's new in the medical field is an amazing tool to have and this group provides that.

I have suffered from cluster headaches for more than twenty years. Fortunately I have had excellent care both locally and out of town with headache specialists. I have had a couple of long term admits to a top notch headache facility and learned much over the years. I have participated in many in person support groups with neurologists, psychologists, pharmacists, nurses, and other patients. These have all been extremely helpful but none of this can begin to compare to the ongoing knowledge base and support that I can participate in at CHSG.

A site that is supposed to be a "support" group doesn't do anything aside from supporting their own pockets with the money they draw through other suspect means. Mr President Chris Hannah has stolen CH websites, withheld CH research which was painstakingly gathered over years and years and suppresses freedom of speech on the CHSG Facebook page. Everyone is left to suffer with lots of well wishes. Its a shame that so many on that page will never experience what its like to be pain free while remaining uninformed. I urge them all to seek out other sources of information and do their own research rather than rely on these people.

Brilliant support group. The people are amazing and so supportive. For someone who suffers such a debilitating invisible illness this group is a God send. Not only can I connect with others who 100% know exactly what I'm going through and can help me through the tough times but I can also support people in return.

The Clusters Headache Support Group (CHSG) has made a profound difference in not only my life, but the lives of those who support me. As a former prosecutor, I find it refreshing to get scientifically factual information supported by research. I also appreciate not having unsafe and unverified, except anecdotal, pushed upon me as a cure all. CHSG entitles everyone to their opinion. CHSG provides support and an unbiased avenue to seek support from other sufferers. CHSG does not have an agenda, especially one espousing the use of illegal substances.

As a cluster headache sufferer the information provided by this group was invaluable.

I have unfortunately had dealings with CHSG and not in a positive way. CHSG like to bully people when they are down and I have been on the receiving end of this where their 'president' thought it okay to try and bully me via private messages. The group is censored so no one is allowed to speak freely without retribution. Shame on them.

CHSG, through its private Facebook page, censors its members and does not permit open discussion or dissenting opinions.
Members are bullied and threatened into donations. Members are coerced into signing up for their 'spiral patient registry' on the auspice of ground breaking leading edge research. What is the list really for? With all this personal medical information, who is the list shared (or sold) with?
It is their way or the highway. How much relief can a sufferer truly get from 'pain free wishes'. What new original tools have they provided anyone in the way of support? What research have they funded?
Idle personal threats of liable lawsuits are thrown around as means of control.
There are some great support groups out there. Sadly, for those that drink CHSG kool-aid, this is not one of them.

I have had nothing but positive experiences with this group of people!!!

This wonderful group saved my life and my sanity. I am forever blessed and grateful for them.
I rate them 5 stars!

The group is supportive and never judgmental. There is always someone there to remind me that I am not alone with this excruciating, debilitating pain. When there are new clinical trials the dmin posts them which I find helpful because even if there is not one in my area, something is being done to try to help us. I have been in other cluster headache support groups and some people can be very angry and negative. That doesn't happen in our group. There are always several admins around to moderate. I have been days when I think I can't deal with condition anymore. I just want to be done with it all. I am not suicidal, just tired of being tired and in pain.At times like these, I am so grateful that others understand andnot just one person. Each post gets a lot of responses. It's like a family.

The Cluster Headache Support Group has been absolutly wonderful in helping hundreds of people who are struggling with this debilitating yet hidden disease. We all need to vent our frustration with the incredible pain this disease causes, and the way we are treated by those in the medical community who do not understand. Many of us have lost jobs, family and friends as well as freedom to live a normal life. This group provides a forum for people to have support for these frustrations, from people who are there themselves. Thank you CHSG.

I am a Cluster Headache Sufferer and I cannot applaud this organisation enough for the support it has given me in dealing my illnes. Before discovering the Clustor Headache Support Group I felt alone and isolated and that nobody understood how I felt. I know have a family of people who understand and who I can share advice about how to cope with the daily challenges all suffers have to face. Cluster headaches make your feel very isolated and alone, this charity has brought many people together so we are now facing this terrible illness together.

A truly lifesaving, life changing Nonprofit group!

I found out I was not the only one...
Welcomed like Family the Support and Knowledge sharing is so Real!! Also when someone finds out about a trial.. Everyone gets the News!! IAM NOT ALONE ANYMORE
I represented CHSG to get Cluster Headache into NORD myself.. I believe this strongly in what Chris the founder wanted/wants it doesn't sway!! This group of Family have pulled me out of some HELLISH TIMES can't say thank enough... Hey I love this group of WINNING WARRIORS... Anita

Great to connect with others with your rare, chronic disease. Ability to compare treatment modalities, successes and failures. Wonderful emotional support. Also great educational tool.

I have recently been suffering with Cluster headaches and a friend suggested this support group. I hesitated because I felt how could a support group help me. I was so wrong. I have learned so much about this illness and many different medications, therapies and meditations to help me, but most of all the love and support from the people in the group. When me or anyone else in the group is having one of our "attacks" you can almost feel their arms around you holding you. Their words help you to keep going. Please help and do everything you can to support and keep this group going. Thank you.

This is a wonderful group for support and information. I have learned a lot about treatment options for my cluster headaches. It means a lot to have a community of people who are similarly afflicted.

I am a chronic cluster headache sufferer, but didn't know anyone else who suffered with it until I met this group! I have gotten such good advice and support from the people who understand! This group is looking for a cure for this, and boy is it sorely needed. This is one of those unseen illnesses but it wreaks terrible havoc. It's an awful thing to be in that much pain!

This group really helped me learn the most about my medical condition. I really appreciate the support I get from the members, because they have been there before. Without them the condition would be worse because of the lack of patient advocates and extremely knowledgeable members.

I have had cluster headaches since I was 17. That's 30 years (omg). When I found the Clusterheadache Support a Group a few years ago it was the first time I ever got to talk to someone else who truly understood what we go through. It was absolutely life changing. The support and understanding of other sufferers has brought me so much peace. I even joined the board last year to try to return some of that energy I have been given. It is a truly remarkable community and I have even been able to meet other members. Watching them have attacks was profound as I had never had to witness one. Made me go let my friends and supporters over the years how much more appreciation I had for them. So having a community that braces and supports both the caregivers and the sufferers is paramount to me. If you suffer from CH or support someone who does I can't recommend strongly enough.

I found the Cluster Headache Support Group on Facebook and I am happy I met all the people there.
Only people who suffer from Cluster Headache really understand what the pain is, how it feels to live a life dominated by pain and ways to treat them as good and as bad as possible.
They just make a difference in my life...

CHSG does a great job. Raising awareness of our rare condition, assisting research, and support and friendship for sufferers and our loved ones. Always there, no matter how I feel, where I am, or what time. Someone to reach out for in the darkness.

Cluster Headache Support Group helped me obtain the proper diagnosis and necessary oxygen treatment from my neurologist.
Their Facebook discussion group has given a lot of valuable cutting edge treatments and medical studies to better the lives of CH survivors.
Their family-like encouragement in the private discussion group has SAVED LIVES!

I became aware of Cluster Headache when a dear friend was diagnosed with this debilitating. Through the Cluster Headache Support Group I have become more aware of the medical treatments available for people who suffer with cluster headaches including educational support and information for family
and friends of cluster headache patients.

Thought I was alone in my suffering this site had helped me on numerous occasions from getting information on my condition, support when I am at my lowest and just being able to actually communicate with people who understand my pain and suffering. We're like a family Of 5,000 plus who we can turn to when we don't want to sound like a broken record to those closest to us

I found CHSG 3 years ago, they were my life saver with all the support and advice they gave me. I have survived episodic cluster headaches for 25yrs alone, until I found these guys. Totally amazing group of people. Thank you all so much.
Many thanks and pf'wishes Elaine
N.Ireland

I have cluster headaches and had a lot of help from this group

This organisation is in a category of its own ! It has been a blessing meeting and speaking with other Clusterheadache sufferers and Their carers. The Information I got there has litteraly Saved my life and helps keep me Sane ... And in the process I get to help others improve their quality of Life by sharing my experiences. honestly 5 stars won't cut it ...

As a cluster headache sufferer, this group has been amazing. Finally, I do not feel completely alone in my condition which I did for 13 years previous. I have only posted once but the response was really supportive so thank you.

Being able to connect with others who share the same illness is very helpful for getting thrue the episodes
So valuable for the likes of us getting the latest info on medication and other treatments

I am a sufferer and the organization has helped me with treatment options and advice. They have also given me direction in the middle of the night when no one else was available and I felt hopeless and helpless. I know they have saved several lives (and I am probably underestimating this). Daily, they provide support for many people almost immediately. I can't express how grateful I am for this group.

The Cluster Headache Support Group has provided me with invaluable information that I had not been able to find elsewhere, is providing amazing support, and is one of the largest organisations (globally) to drive initiatives for awareness and the search for a cure of far too unknown and utterly underestimated disease. A very caring organisation relying fully on volunteers, I keep being impressed with their professionalism.

This is by far the largest non-profit organization working toward better treatment options for cluster headache, specificially. It is also the most giving and caring organization I have had the pleasure to engage with, and they do it all on a volunteer basis. Great information, education, support, and a broad range of research activities!