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The Cluster Headache Support Group, Inc.

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Nonprofit Overview

Causes: Health, Neurology & Neuroscience

Mission: The Cluster Headache Support Group, Inc. is a 501(c)3 non-profit organization dedicated to improving the lives of those suffering with Trigeminal Autonomic Cephalgias.

Target demographics: Cluster Headache and other Trigeminal Autonomic Cephalgias

Geographic areas served: Cluster Headache is one of the most painful and debilitating conditions known to medical science, yet most people have never even heard of it. It is rare, occurring in about .1% of the population, and as such has very little support for research and development of new medications. In fact, there are no available preventive medications for this disease that strikes down the sufferer multiple times a day. Please help us raise awareness by wearing this t-shirt, donating toward research and awareness efforts, or at least sharing our link. We'll take all the help we can get!

Community Stories

190 Stories from Volunteers, Donors & Supporters

1 Melissa M.19

Client Served

Rating: 5

Had cluster headaches for 20 years before I found this organization! I no longer feel like a wuss thinking I’m weak and can’t just suck up the pain! I cried the first time I found the group knowing my behavior during attacks was normal and I was not a mental case! This group is phenomenal! Everyone is so real and just want to help each other by sharing experiences on what worked for them and what didn’t. We are all different and not a one size fits all when it comes to abortive meds and tricks. So many fellow sufferers that you no longer feel alone and you are literally talking with hundreds of people (both suffers and caregivers) who understand our crazy emotions when the beast takes control. So much information available on treatments and how to get a proper diagnosis quickly which we all know is key. Thank you to the founders of this group and all those who participate by sharing stories and experiences.

Comments ( 1 )

channah Melissa, Thank you so much for your kind feedback! We are so happy to provide at least a portion of the information and ongoing support you were looking for.

John M.20

Client Served

Rating: 5

...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...

Client Served

Rating: 5

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.

General Member of the Public

Rating: 5

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!

General Member of the Public

Rating: 5

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.

Client Served

Rating: 5

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.

2

Client Served

Rating: 5

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.

1 Gina Keller J.

Client Served

Rating: 5

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.

Lucas D.

General Member of the Public

Rating: 5

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.

Previous Stories
3

General Member of the Public

Rating: 5

They have been great! I have had positive contact with everyone that I have spoken with. They are a great support for people that are dealing with same thing and can relate.

General Member of the Public

Rating: 5

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!

Susan Reinhart K.

Volunteer

Rating: 5

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.

Valerie B.2

Client Served

Rating: 5

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.

1 Adrie M.

General Member of the Public

Rating: 5

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.

Jamie C.2

Client Served

Rating: 5

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.

Laura246

Volunteer

Rating: 5

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.

Review from Guidestar

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2

Volunteer

Rating: 5

I have been a member for several years. I found the non profit when I was searching for answers and desperate for help. These TAC's are known as suicide headaches and I see this non profit support and educate so many who are feeling as desperate as I was originally. Up to date, current medical trials, research and scientific based information can always be found on the site. I learned of the latest ATI neurostimulation trial though CHSG and am now an implant recipient, helping future cluster patients by tracking and sharing my data. I have been a volunteer administrator for a few years, The caring and knowledge of the all volunteer admin team is vast, They will readily support and member while sharing a particular study link to help them member get the correct information. The members will surround, support and lift up fellow members though the rough times as celebrate the victories as well.

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1

General Member of the Public

Rating: 5

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

1

Client Served

Rating: 1

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.

1

Client Served

Rating: 1

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.

Professional with expertise in this field

Rating: 1

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.

Danielle112

Client Served

Rating: 5

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.

Joanne56

General Member of the Public

Rating: 5

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.

Previous Stories
4

General Member of the Public

Rating: 5

Thankfully I found this group. I wasn't sure if I had cluster headaches until I came here and was able to put all the symptoms I'm having together. The information I've received is invaluable and the support so extremely helpful. I would highly recommend this group to anyone looking for answers, information, help and or support.

Nick78

General Member of the Public

Rating: 5

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)

1 Kathleen132

General Member of the Public

Rating: 5

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!

2 Claudia Lily M.

Client Served

Rating: 5

CHSG changed my life. I had been misdiagnosed for 6 years with migraines and sinus headaches and after many failed medications I had turned my back on doctors and on hope itself. Finding CHSG gave me the information and support I needed to find a specialist neurologist and finally get an appropriate treatment plan. I now have assess to the best known treatment for clusters. Life is still difficult, there is no cure, my condition has deteriorated and I spend a good part of each day in pain. BUT I never feel alone and always know that if things get really bad I can reach out to those who truly understand. The admin team are outstanding and devote so much time to supporting the group and sharing information and the group members must be the most compassionate, caring, good humoured and strong individuals I have ever had the pleasure of encountering. No judgement, no pseudoscience, just pure love, support and excellent advice.

Previous Stories
4

General Member of the Public

Rating: 5

I have suffered from CH for six years and have been a member of CHSG for around 3 months. The pain of CH is totally debilitating and the anxiety and depression which accompany this condition can be equally as crippling. For 6 months of the year I am a perfectly healthy, positive, driven person and for the other 6 months I am anxious, depressed and exhausted and spend around 3-8 hours a day writhing in agony. CHSG were a life line for me during my latest cycle which coincided with my final semester at university. With all of the stress and the constant pain, I was questioning my capacity to cope with it all much longer and fear that my mental state was rapidly deteriorating to a dangerous low. CHSG welcomed me with so much warmth and a level of understanding that can not be found amongst non-sufferers. On an emotional level, the group were like a backbone to me, holding me up when I felt at my weakest, encouraging me to hang on for better days. However, CHSG also provide outstanding practical advice. After seeing endless doctors and being misdiagnosed with a whole host of other condition, I had given up on medical help but with the advice and support of CHSG I was finally able to get a referral to a neurologist who specialises in headaches and facial pain. After 6 years of suffering alone, with no form of effective treatment, I am now a member of an amazing support network and am able to reach out to those who understand to offer care and be cared for, I am under a neurologist who is the first of many many doctors I have met to understand this condition and I am armed with a with arsenal of effective medications for when the next cycle hits me.

Coping with the pain and psychological impacts, trying to get a proper diagnosis, to see a good doctor and to get the right medication for CH is a bit like an uphill battle and until I found CHSG I felt that it was a battle I could not win. Now with a small army of clusterheads behind me, willing me on and offering brilliant advice and support, I feel strong enough to face this condition and to take the steps necessary to reduce my pain. CHSG consists of some of the most compassionate, loving and genuinely kind hearted individuals I have ever had the pleasure of encountering and I am very grateful and proud to be a part of the CHSG family.

Writer

Donor

Rating: 5

Without this group I would feel isolated and alone. I live in India and access a lot of my info about my disease from this group. It has helped me advocate for treatment with doctors and my insurance company. Seeing what others go through, which echos my own misery, validates my feelings and provides solace. Just knowing there are others out there like I am helps tremendously in coping with this incredibly awful condition. Thank you CHSG for all your help!

Previous Stories
8

Client Served

Rating: 5

The CHSG has been a vital part of my life with cluster headaches. The members have supported me in my hours/days/months of need with caring messages and more importantly the right information about treatments for this horrible condition. The CHSG has helped me find the right treatment for me and has guided me with scientific evidence for my condition. It is a place to feel loved and for me, it is the place that I finally felt I wasn't alone in my misery!

1 Georgia Kate M.

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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!

1 Derek R.

Donor

Rating: 5

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.

1 martoglio

General Member of the Public

Rating: 5

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.

Previous Stories
7

Volunteer

Rating: 5

I found this group several years ago and it has been wonderful. Our condition is rare enough that you don't know other people who have it. This group provides a safe and friendly place to make you feel that you are not alone. Over time, CHSG has provided treatment options and ventured into finding new areas for research. I am aware that the administration has saved many lives, as our condition is also called "suicide headaches".

1 Charles84

Board Member

Rating: 5

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.

1

Client Served

Rating: 5

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.

1 annmathews

Volunteer

Rating: 5

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.

Previous Stories
4

Volunteer

Rating: 5

CHSG provides me with information and support I wouldn't find elsewhere. I love CHSG. I benefit every day from the online presence and the behind the scenes hard work of the Board and Chris Hannah, President of of CHSG.
I love the objections for 2016 and look for to the great progress I know that will be made.

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Linda469

General Member of the Public

Rating: 5

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.

1

General Member of the Public

Rating: 5

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.

Previous Stories
5

General Member of the Public

Rating: 5

Since I was diagnosed with CCH this group has been my absolute lifeline, it always has up to date information and the most amazing support at anytime day or night. It is a private space for people who are in a very low place at times to post and learn in a caring enviroment Thankyou for everything you have done for me CHSG.

Read more

General Member of the Public

Rating: 5

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.

3 Gratefulrich

Client Served

Rating: 5

It is so easy to feel hopeless with this illness. It is not a common problem and most of the people around me just don't get it. How many times do I have to hear that someone knows how bad it is because they have had headaches. This group is full of people who DO understand. I have a place to get support, I have a place to vent, I have a place to learn from others and, on good days, I have a place to provide support to others. This group has changed my life!

3

General Member of the Public

Rating: 1

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.

Comments ( 1 )

profile

channah 03/05/2017

We are so sorry that you found the information confusing. That is good feedback for the moderators and staff. In fact, many cluster headache sufferers also have migraine headaches so it is inevitable that the topic will come up from time to time. There is actually no such thing as cluster migraine. We do also support all Trigeminal Autonomic Cephalgias, to include SUNCT, SUNA, Hemicrania, etc. Triggers are relevant to both headache types and are important to recognize in order to reduce your number of attacks. They are similar to those of migraine sufferers although migraineurs do react more frequently to bright light (photophobia). As you become more knowledgeable about CH, you are welcome to come back. We tend to have many very knowlegeable members and moderators.

3 Ruth68

General Member of the Public

Rating: 5

The CHSG is a well organized and knowledgable support group. The board members and admins are on top of everything. The members (a/k/a "family") are the most supportive "family" there is. When a post is posted, it is answered or commented on in the blink of an eye. No one is judgmental. We are not alone. Everyone is there for you. The knowledge within the group is amazing. Sadly, the medical field is not seasoned with cluster headaches. We in the CHSG know the pain, feel the pain, feel the isolation , feel the isolation from family and friends, sadness, anger, trials and tribulations, etc. The CHSG is growing by the minute. Thank you Chris Hannah for forming this incredible group. This is my second family I know I can count on.

4 Amelia9

General Member of the Public

Rating: 5

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

3 Sophia12

Volunteer

Rating: 5

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.

4 Steve168

Client Served

Rating: 5

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.

4 Kevin151

Client Served

Rating: 5

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

4 Sheryl17

Board Member

Rating: 5

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.

Previous Stories
12

Volunteer

Rating: 5

I joined CHSG several years ago in search of other people like myself who are intractable and chronic. What I found there was an amazing support system and knowledge of different treatment options coming available. I am very thankful for this organization.

4 Wendy148

General Member of the Public

Rating: 5

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.

4 Kellie F.

General Member of the Public

Rating: 5

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.

3

Client Served

Rating: 5

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.

4 Kellie9

General Member of the Public

Rating: 5

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 .

4

Client Served

Rating: 5

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.

Previous Stories
9

Client Served

Rating: 5

I am so thankful that I found this group on the Internet. I have personally gained more knowledge on a wide variety of treatments and medications through this single group than I have with all of the other sources I've found combined. They are on the forefront of medical studies and are actively continuing to help search for more treatments and hopefully, one day, a cure. They openly share all of that information so those of us who suffer can make informed decisions about our personalized treatment. On top of all of this, the support I have found and have witnessed in them has been profound. I highly encourage anyone with Cluster diagnosis or symptoms of it to check out this group. I know it will not disappoint!

5 Samp76

General Member of the Public

Rating: 5

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.

Previous Stories
8

General Member of the Public

Rating: 5

I can't say enough about this group. They are like family and a safe net for me.
They listen and help anyone with this condition.
I can turn to any person on there for help, it's given. Nothing but praise for them

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4

General Member of the Public

Rating: 5

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.

4 Writer

General Member of the Public

Rating: 5

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

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7

General Member of the Public

Rating: 5

This support group has helped me so much in dealing with my cluster headaches. It was such a relief to find others to talk to who know what I'm going through. I have also found valuable information regarding treatment of the headaches from this site and the people who are a part of it.

4 Apryl Rae S.

Client Served

Rating: 5

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.

4

General Member of the Public

Rating: 5

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!

4

General Member of the Public

Rating: 5

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!!

4

Former staff

Rating: 5

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

5 Emily140

Client Served

Rating: 4

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.

5

Volunteer

Rating: 5

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!!!

3

Client Served

Rating: 1

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.

Comments ( 1 )

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channah 03/31/2016

I'm sorry you had a bad experience. Clearly we were helpful to you for some time. I don't know who you are or what the circumstances were regarding your removal from the group, but generally we have clearly articulated rules of conduct and compassion for others on our sites. We do our best to ensure a safe and respectful environment of real information and courteous discourse.

4 Tina99

General Member of the Public

Rating: 5

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!!

3 Leah46

General Member of the Public

Rating: 5

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.

4 Katrina F.

Client Served

Rating: 5

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.

3 Helene5

General Member of the Public

Rating: 5

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

4 Robert184

Client Served

Rating: 5

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!

4 Carl X Emma M.

General Member of the Public

Rating: 5

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