Some live circumstances lead me to your site.
I really really need your help.
I read a lot of information about cluster headache, and cannot find the main question for me.
Why it can kill? How fast?
Could you please share with me lethal complications from such headaches?
In what cases it can lead to lethal outcome?
How long or fast such headache can broke the heart, for example, and kill.
Sorry for such sad questions. I really need to know the worst ways. It is a question of live or death.

Kind regards and looking forward for your help

The only way cluster headache syndrome has killed, as far as I know, is through suicide. It is a completely non-lethal affliction. Painful as anything, but it does not kill by itself.

Not sure where you're getting your information. If you hang around here, you'll get the real scoop.

Are you looking to killl cluster headaches or find out how cluster headaches kill people??

Brew is right, CH is not a disease that kills people.

As for killing the headaches..... there are a lot of ways.   Oxygen (see link to left) is one.

Please let us know exactly what information you need and I bet we can come up with it.

Oh .. Little Tomato...Don't worry, CH won't kill you.

   If you read all you can here, you will learn ways to deal with it.   There is a lot of ways these folks here can help you,,, most of all just having someone else who knows what you go through.

    Where are you from?   Do you have a good Doctor who prescribes you Oxygen?  That is the best!

Many of us here have lived with this for many many years, so not to worry!

Ask all the Questions you have....No question is left unanswered.                   Lorac

Cluster Headaches will try to break you down...try to break your heart...try to break your spirit...try to make you give up and end it all.
What we do is fight back!!! And for many of us the best thing we have found to fight back is this website!! Congratulations, you found it too!! Here you will find all the answers to all your questions about Clusters. Here you will find hundreds of other people that suffer from the same pain you do...people that really do understand and really do want to help.

You WILL find help here!! Stick around. Tell us more about yourself and your situation. Ask questions. Read!

Welcome. God Bless!

CH will almost kill you if you let it.  They aren't called suicide headaches for nothing.  I can't tell you the number of times that I have thought about ending it all during the dark times.(that is why my husband is not allowed to own a gun).  However, it seems that if you reach out for support,  and you can find tons here on ch.com,  you will start to feel that there are things you can do to help yourself.  There is help out there, even if you have to find it for yourself. 
    Clusters will sink you into a deep depression if you let them.  Every time that starts to happen, you have to ask for help and the good people here will put their arms around you, give you good advice, and pull you back into living again.  Don't give up.

Good luck,
Christine :-* :-*

CH is not a disorder which endangers us in the long run. There is no fatal pathology as part of the disorder.

I can imagine you hearing a story about someone with severe headaches dying of a brain tumor but, in  such a situation, you would not be dealing with cluster headaches.

Your message conveys much anxiety. It would be help us to aid you if you would more fully tell us about the source of your concerns.

Little Tomatoes are some of my favouritest things in the whole world so I HAVE to try and help you! :)

You have had some wonderful advice so far from some terrific and compassionate people. At the risk of sounding rude, and I don't mean to, is there another language it would be easier for you to communicate in? If so please say and we'll see what we can do to help. If you are happy talking in English that's fine! We would love to help you here and I think everyone who has posted so far is very concerned about you and we NEED to know you are okay.

We want to help, let us know how we can

Helen

Thank you very much, for your replies. I really appreciate your help. And I really need help.

Sorry for this strange message. Unfortunately, this is the real case.

I do not know the reason of the problem. As I Understand the headaches are the consequence only. It is visible pain. I do not know what it breaks in the body. I know it DOES. I know it kills.
This is a verdict made by doctor.  The problem it is not me. He do not want to tell me the truth, the only I know He will have several years probably a little bit more.

That is why I am looking for any information when and why the headache pain can occur and what reasons can be. I know this is cluster headaches.

I am sorry for disturbing you, Dears.
I am just looking for the truth hoping somebody knows something very rare information for example.

Sorry again if I mistaken with the forum.

Please believe us that Cluster headaches DO NOT kill.   You were misinformed.

Wish I knew how to help you more.  Where are you from?   We would like to know more about you so maybe we can help you better.

Jeannie

Quite frankly, if the doctor diagnosed cluster headaches and told you they were fatal, THE DOCTOR IS WRONG.  I would get a second opinion immediately.

If the diagnosis was something else, or something IN ADDITION to Cluster Headaches, that's a whole different scenario.

Little Tomato,

We're all very very worried. There is definitely some confusion here with what you have been told. Please come back so we can see if we can help, we will do our best.

Helen

Talk to us LittleTomato - we are either fellow sufferers or friends/family of people suffering from CH. Let us know what part of the world you are in. One of us can call and talk to you privately to answer more questions. Or we can do it via message. It sounds to us as if you have some mis-information, or maybe we don't have enough info to help you.

We are here for you!

Little tomato:  1st, can you tell us what language you speak.  Maybe we can get someone to talk to you in your native tongue. 

2nd, it sounds to me like you think it is cluster headaches but the doctor is saying it is something fatal.

3rd, we are happy to help answer your questions.  Please keep asking..... we will get you whatever answers we can!

Wow this is scary. Little tomato, are you their? allot of us very worried. Please explain more. I've had these for 14 years. I've seen 3 neurologist (sp?) I am positive they are not fatal unless it results in suicide. Please get back to us. We want to help. 

Little Tomato,

Please set your mind at ease.  I've had Cluster Headaches for over 32 years, and if they were fatal I would have been dead a long time ago.  They are severe, possibly the most severe pain known, but they do no direct harm to the body.  The only lasting harm done is due to what we do to ourselves to try to lessen the pain.  You will learn proper methods of dealing with the pain here that will not harm you or your loved one, and you can learn methods of preventing many of the attacks before they happen. 

Please feel free to ask any questions you wish, and be as specific as you can.  We are not Drs., but have dealt with this malady for many years, and have dealt with many Drs. along the way and can share what we have learned from them.

Jerry

Very well said Jerry.

Jrcox 

   

Xin chào cà chua ít
Привет немного томатного

There are many rare things we know of cluster headaches for instance it can be caused by a tumor or disease in the carotid arterie but its rare. The headaches can be a symptom of this.
There is much more we know but you must provide more details as to why you ask these questions so the people above can answer as you need..

For information on cluster headaches this is the best place.

Hola Tomatito, ¿podemos ayudarte?
Saludos
Poli

(looks like spanish/english)

Poli wrote on Nov 17^th, 2009 at 5:49am:

Hola Tomatito, ¿podemos ayudarte? Saludos Poli (looks like spanish/english)

Spanglish

Quote:

I do not know what it breaks in the body. I know it DOES. I know it kills.

All of us who have responded to you are telling you the truth.  It does NOT break anything in the body.  It does NOT kill.   Please believe us.  Any Doctor who would tell you that is VERY, VERY, VERY mis-informed and you should see someone else as soon as possible.

I have had these headaches for 22 years..all of them chronically.  They cause extreme pain.  They cause depression.  They cause life-style changes.  They do NOT cause death. 

Hi Lil Tomato

I think I understand what you are saying......
Do you mean 'kill' in the literal sense of the word or are you using it figuratively?

Clusterheadaches do not make you die...literally.

Clusterheadaches can make you feel as if your life has ended.  You can feel alone, in pain, depressed, hopeless and outright scared.  It can seem like an impossible up-hill battle to get control of them and learn to LIVE with them. 

Rest assured, you won't die from cluster headaches.  If your doctor has said clusters will kill you, he is an absolute baffoon.

Thank you for your warm words. It is really helpful. I am really appreciating your responses.

English is comfortable for me. This is my second language not native. I can do mistakes but I understand every word you say.

Yes, I understand that cluster headaches are not fatal. When I am talking about “kill” I mean real death. Sorry for this 

Unfortunately, I do not know much that is why I need the help.

Actually I do not have much to tell. I have a lot of questions.

There is a young man around 28 years old I love so much and can’t live without him. He has some disease and the headaches ARE the main and painful symptom of this.
I know that is NOT tumor and I know that is rare case.
I know these are cluster headaches.
I know that he do not have much time, several years, probably.
He knows his diagnose and the verdict is sad, and this is not mistake.

He had a lot of terrible stresses in his live and lost the relatives. I know that it was the main reason – terrible stresses, so it can be some nervous problems.

That is why I am looking for any diseases which have cluster headaches in symptom list as main pain.  This is the main question.
Can somebody share with me all the rare cases he/she knows? I will analyze and find the closest and possible one.

I see where the confusion is coming in for you

Cluster Headaches are a condition in their own right, it is thought they can be a secondary condition in some other conditions such as a pituitary tumour. Some people who have had pituitary tumours removed have had a complete cessation of their cluster headaches.

A Pituitary tumour in itself isn't necessarily fatal. Some are operable and some are not. I suppose, depending on where it is and how it could grow it could cause complications which MIGHT lead to death but I don't know. None of us can.

Can your friend get more information for you from his doctor? It's almost impossible to do research when you don't know what you're looking for but my heart goes out to you trying to help and understand so much.

If you can find anything else, let us know. We will move heaven and earth to help you. You have a lot of people praying for you here now and aching to help!

I'm Helen, can we ask your name too?!

Keep updating us - we're all looking several times a day for updates!  :)

Helen

Sure, Helen. My name is Helga.

Nice to meet you and all CH team here.

I undetstand that my information is not enough. I'll try to get more and this site helps me.

Thanks

Hi Helga!

Thank you for being there for your friend.  He is lucky to have you.  It sounds as if you are suffering as much as he.  I hope that you are in some way helped here.  As Helen said, there are many concerned and wanting to help.


Jeannie

Hi Helga

Did your friends Doctor say for sure it was cluster headaches?

If so you need to help him find a new doctor that knows more about cluster headaches.

When I first started having CH's I visited many doctors, no one could figure out what was wrong with me.

Finally I found a doc that knew about CH's and he answered a bunch of my questions. After talking with a professional who knew what a CH was, I was no longer scared and knew that I could beat it and would be able to go on with my life.

What else would you like to know about CH's ? I am not a professional but I have been suffering CH's for many years.

  ch не будет убивать Вас 

Potter wrote on Nov 21^st, 2009 at 2:16pm:

ch не будет убивать Вас

Potter's right.  It won't kill you.  If so, I'd have been dead long ago.

43 years episodic.

Best,

George

Littletomatoes, do you mean you look for diseases that is fatal and gives headaches with pain comparable to Cluster Headaches? Well tumor or Multiple Sclerosis can cause similar pain to Cluster Headaches, is that what you tried to tell/ask us?

Yes, MattyAA.
This is excatly I am looking for.
Thank you very much.

Although unrevealing when having clusters, it is important to initially have head scans done always.

Any neurologist who knows what they're doing will order a brain scan right away before diagnosing cluster headaches.

LittleTomato wrote on Nov 22^nd, 2009 at 3:14pm:

Yes, MattyAA. This is excatly I am looking for. Thank you very much.

Hmm well it is not good your doctor does not want to tell you what kind of diseases it is, if it is fatal indeed, you should go to him and ask about it more, because if it is Multiple Sclerosis with headaches behind eye with very sharp ignited pain then it can be treated and diminished if caught early.

Quote:

There is a young man around 28 years old I love so much and can’t live without him. He has some disease and the headaches ARE the main and painful symptom of this. I know that is NOT tumor and I know that is rare case. I know these are cluster headaches. I know that he do not have much time, several years, probably. He knows his diagnose and the verdict is sad, and this is not mistake. He had a lot of terrible stresses in his live and lost the relatives. I know that it was the main reason – terrible stresses, so it can be some nervous problems. That is why I am looking for any diseases which have cluster headaches in symptom list as main pain.  This is the main question.

I am so glad you came back to talk to us. But I think I am more confused than ever.   You say he WAS diagnosed with Cluster headaches, then we are led to believe the "cluster-like" pain is a result of something else???

Helga, what language do you speak?  I know you said you are comfortable speaking in English but I do believe that some things are being lost in translation.

Please keep posting here.  We want to help.

Linda 

Hello Helga,
I think it would be safe to assume that most, if not all of us suffer from cluster headaches and we don't have a reason why.  For instance, because of a tumor, or an anerisium, etc... (I'm sorry if I am wrong to anyone)

I have not had a doctor tell me I have only so much time left, and others here too can say the same.  If your love has Cluster Headaches only, he has hope to live a long normal life.  He shouldn't have an expiration date stamped on his head.
Did a doctor tell him he has these headaches because of something? Does the doctor know what that something exactly is? 

I don't have "something" that is causing my headaches, I was destined to be built this way.  ;)

I hope all is well with Helga and her Love!!
Angela

Saw you online today.  Where are you?

                       Potter

  Helga, where are you ?  We're worried about you and your friend.


Quote:

I undetstand that my information is not enough. I'll try to get more and this site helps me.

Have you found any more information?

Hi my Dears,
Sorry for late response.

To Linda: Linda, sorry for misunderstanding. It is not the language problems. It is a lot of emotions...
Actually, MattyAA understood my problem. I am looking for  diseases that is fatal and gives headaches with pain like Cluster Headaches.

My love knows his problem, he does not want to tell me the truth. I know several facts and basing on them I am looking for any information which can be the potential answer.

Probably it is stupid, I do not see another way... I found something from your answers. I am in process of studying ....

LittleTomato wrote on Nov 29^th, 2009 at 3:18pm:

Hi my Dears, Sorry for late response. To Linda: Linda, sorry for misunderstanding. It is not the language problems. It is a lot of emotions... Actually, MattyAA understood my problem. I am looking for  diseases that is fatal and gives headaches with pain like Cluster Headaches. My love knows his problem, he does not want to tell me the truth. I know several facts and basing on them I am looking for any information which can be the potential answer. Probably it is stupid, I do not see another way... I found something from your answers. I am in process of studying ....

You need to stop studying and talk to your friend.  Let them tell you what the diagnosis and prognosis are.  You will drive yourself crazy trying to figure it out here or online. 

Until then just be the best friend you can be and remember that all you can do is support them!

Don;t drive yourself crazy with the "could be"s!!

Best of luck

Quote:

You need to stop studying and talk to your friend.  Let them tell you what the diagnosis and prognosis are.  You will drive yourself crazy trying to figure it out here or online.  Until then just be the best friend you can be and remember that all you can do is support them! Don;t drive yourself crazy with the "could be"s!!

Just one of the many many reasons that I love ya Eric.

If Matty , as you say... is correct, with his MS...that you say is "what you are talking about" 


then we wish all of  you well, and hope he gets some treated very soon.  :-/

How is it going for you Littletomatoes? Found any answer, if it is Multiple Sclerosis, it does not mean your love has not much time, if treatment is done quickly, he will live loooong life and symptoms may go away and become less, there are few more neurological fatal diseases with 'Cluster headache' like pain symptoms, but you better talk with doctor instead searching it on googles, you may end up in point where you will be not sure which diseases to pick and suit most, Try to convience your beloved one, or perhaps talk with some doctor telling symptoms of your love. Headache and that it is fatal, perhaps other symptoms that you noticed or your fiancee spoken about or showed when around you.

All in all one thing I am sure of, be it fatal diseases, some kind of treatment must be taken, even if it is worst case, miracles happen.

Little Tomato,
I hope you don't mind if I ask a few questions:
Why do you think your love has a fatal disease--did he tell you that?

As far as cluster headaches go, they are not fatal.  If you are looking for clues, I would say cluster headaches should not be one of the clues.
Some other diseases can have terrible headaches as part of the picture.  Multiple sclerosis for example, but these are NOT cluster headaches.
Again, it sounds like you do not have much information to go on, if your love will not tell you any information, I would try to take a deep breath, it sounds like you are jumping to a conclusion without many, or any, facts.

LittleTomato , everyone you talk with on this thread you made, suffers cluster headaches. None of them are going to die from cluster headaches. If they do, it is because they gave up and crashed a car, jumped off a bridge, or shot themselves.

You need to tell these nice people what you know, about this 28 year old male.

The doctors that are aware of this problem are far and few between.

So there is no 'rare cases' for us to tell you about.

We all hurt in some alike way, and none of are going to die from this problem.

Why leave us all guessing?

Hi, me Dears.
Sorry for rare response. I have some personal problems and do no have time to chart.
To Startlight: "Why do you think your love has a fatal disease--did he tell you that?" - YES, HE DID.

I agree with you that I do not have enough information to search. I think about the variant to visit a doctor. I do not have enough information for him also.

At the moment I have several ideas what it can be. The headaches I see and know when my love feels pain are very similar. Now I understand it is another case or just a symptoms...

Thank you for your help,
Your answers really help me

Helga,

I would have to back up Matty on this also.  My wife has had MS for over 20 yrs, and is still doing fairly well.  She was put on medication early on that helped to control it.  She does have some limitations, but gets along amazingly well.  That said, I know sometimes MS progresses more quickly in some people than in others, but I would not look at a diagnosis of MS as a death sentence.  We all have a death sentence, but it is not necessarily an early one just because of MS.

Jerry