I just got an email from my family this morning saying they didnt want to hear from me anymore. This is because I was looking for shrooms and lsd via facebook and my friends and family on there. I explained why I needed them and I do not hide the pain I am in. So because I am damaging the innocence of children by talking about it and asking for help I have been disowned. I have also been ridiculed and aggrivated by my mans family here in Denmark for the same reason. I have been called retarded, attention seeking, a drug seeker, not good enough for him and lots of other nasty things. All this after my neurologist took away my 02 and told me there was no hope or help for people like me. I also have trigeminal neuralgia on both sides of my face, migraines and chronic persistent daily headache. None of the medications that I was given helped at all. It is a constant battle just to fight the pain and stay alive. I really didnt need to be disowned or ridiculed for my pain. I have made it known to my family that I dont approve of being judged that way. They all know that I would never ask for things like that if I wasnt sure it would help. I begged for help and acceptance and this is what I get. I am going back to bed so I dont go for a long walk to the train station and jump in front of one. No I am not kidding and I am really upset. No hope and no support from family will make a person really depressed and suicidal. My man heard about this and ran outside to work in the yard. He doesnt want to hear it either. Life truly sucks. Sophia

Sophia, so very sorry to hear that your family is turning their backs on you, I do not know what to say other than you have all of us here 24/7 for you.

Why do people do this? I get the  ::) at my workplace, mainly because they have not seen me get hit there so they just don't get it I guess.. My family is about the same way, except for my Mom, who, of all people, did not scoff at me trying the srooms, which did not work for me this time, but may try again another cycle.

hang in there Sophia, you are a Clusterhead which makes us a strong as anybody out there. You can get over these hurdles with all of us behind you!

  Barry [smiley=hug.gif]

I can't even begin to imagine how all of this must make you feel.

The CH family will not disown you, Sophia.

Hang in there - you are stronger than you think you are.  

Hugs
Carol

Sophia; you have a family right here that wants to hear from you. At least you don't have to go through that frustrating crap of explaining what this is. They never get it.

Keep posting, Kid.

Charlie

I believe this is a very common problem for CH sufferers. Family and friends can not logically understand our pain. They think that if we are in that much pain then we should die from it. This leads to the conclusion that it is a mental problem.

In reality, before I had CH, I couldn't understand. I thought someone with headaches of any kind had some type of mental issue or treatable brain disorder. I was wrong! So are they.

Along with the pain of CH, being misunderstood and doubted, can make us feel alone and damaged. Yes me also. Never forget you have people that do understand right here. Please...

Don

i've pretty given up on people that don't understand. it doesn't even make me mad anymore. most importantly you have to deal with your affliction. when you get that figured out and under control then you can mend fences with your folks. if you try to juggle all of these things at once its going to drive you crazy if you aren't all ready.  i'm sure things will work out in time.

Thank you all for caring. I am scared to open my email and read the lastest things they write me. Beginning now I am deleting them and blocking them from my inbox. I am truly afraid I am losing my mind. I will ask my doc about a therapist and will call around to the local hospitals to see if I can find a support group. I am afraid I will jump in front of a train or take an overdose without the help I need. So I will find it asap! I wish my family would understand that I just need them to love me and try to understand and not keep blaming me for my disease and the pain it causes and the desperate measures I feel forced to go to. I honestly dont try and say my pain and situation is worse than anyone elses. I dont try to act crazy. Maybe someday I will get that from them. In the meantime I am grateful to all of you. I will try to be as supportive to others as you are to me. That way I can keep the understanding rolling. We all need it. Big hugs from a very lonely Sophia

i am so sorry for this.
Keep the spirit up no matter what and take care of yourself.

Just your latest post proves you are strong.  And still thinking clearly.  Follow through and talk to a therapist like you said.  Someone neutral would be a nice outlet.  I can relate to how alone you feel when it comes to your family treating you crazy, my dad, his wife, and siblings were wanting to have me committed cause they thought my CH's were a reason to send me off there.  It's a lonely hurt feeling.  But try your best not to drown in that despair and hurt.  And yes do NOT open your email.  That's just concentrating on continuing getting hurt.  I would delete that account.  In my opinion. I got alot of mean emails that I conitinued to read and in hindsight I shouldn't have.  Maybe when you are in a better place you could reconnect with your family later on if you choose.  So that's my advice.  I didn't go exactly through what you are, but I thought maybe I could pull out a few similarities and share with you and it may help.  If not atleast know this........

Hang in there please, as alone you may feel, you truly are not!!!

Sophia wrote on Jun 1^st, 2009 at 8:53am:

I wish my family would understand that I just need them to love me and try to understand and not keep blaming me for my disease and the pain it causes and the desperate measures I feel forced to go to.

That statement got to me.  Sophia you are not crazy, you are not alone, and you are not to blame.  Them taking that point of view is equal to a CHer blaming their parents for them having the disease, for the simple means of genetics;  

You have no control over this thing being in your life;  what you do have control over, however, is how you react to it, how you deal with it, and what you choose to make of your life in spite of it.

If your family cannot be supportive and loving, even if they don't understand, then it's time to do as you have been advised, and either eliminate (for now) the contact with them, or at least minimize it to the barest necessity.  

Focus on you, keep yourself looking for help for both CH and whatever else may present itself as a result of the situation.  Do not withdraw from the world, reach out to us here, we DO understand, and we can and will support all who suffer in whatever way we can.  There is always hope, because the sun will always rise on a new day.  Hope will only end when life ends, and you are much stronger than you believe yourself to be right now;  You CAN and WILL succeed in taming this beast, and you will be able to sort out any family issues from a position of strength and certainty within your own heart.  

For now, leave that nastiness aside, and stay focused on yourself, and getting the help and treatment you need.

People fear what they don't understand;  it sounds to me like your family is very fearful because of your condition and their lack of knowledge on the subject.  Time is your best ally in this situation;  

Cat

Sophia if you want to talk pm me your phone number and times which are better for you to speak. I'll call you happily, you're not alone, you've only got to come here and we'll all support you. We know the dark places too. We'll help you find your way back out into the sunshine.

Don't give up on US

love
Helen

:'(

I'm so sorry to hear this Sophia.  Know that you are not alone and we here do understand what you are going through.  

I do hope you family comes around for you.

Hugs,
Beth

Thought long and hard about your post Sophia and felt I needed to reply.
The despair all of us go through on this site at some time or another is well understood so you’re not alone even if you think you are.
Just glad you found this forum, I’m new like you compared to other members as you will undoubtedly find through reading their posts and it’s helped me just to know someone understands.
This is like a little sanctuary to me and whether you just look or add something you will find plenty of information but most of all Love and support off those in the same boat.
Colin.
Keep that chin up.

Hang on, Sophia. Sounds like you know what might help you, and you are pursuing it. Good for you!

I think the family needs some communication, facts, science. If they don't buy in after that, they can bite it.

Good luck, sugar. :)

Can only offer hugs to ya.

Definitely seek a therapist, there are therapists who also deal in pain management which will help you in coping with the physical pain you are dealing with and the added emotional pain that was just placed upon you.

good luck

Eric

Stay strong and take care of yourself.

Society has conditioned people for decades and convinced them that these medicines will turn people violent and permanently crazy.  And the law doesn't really approve, to put it mildly.  So from that perspective, it is not surprising that some people shun others who have expressed interest in taking them. This is not to excuse anyone's actions, merely trying to understand it.  They have not researched it and are operating on a different set of "facts" and strong emotional bias on this issue.  Maybe someday in the future, when they see you healthy and doing well and successful in life, it may be possible to have a reconciliation.  But for the time being, focus on yourself and what you need to do.

And be careful of myfacebookspace and twitcher - what used to be a passing comment that disappeared immediately becomes etched on the internet for all to read - that is a lesson many of have to deal with from time to time.    ;)

You all are WONDERFUL! All very nice people and thank you so very very much for telling me what I already know and just needed to hear again..... I am not crazy (well much anyway) but Cluster Headaches are and it is ok to act nuts from time to time. I only opened one email from a cousin who is a hospice nurse and she said she would think about some book titles to email me for helping myself right now. I am going to limit my interaction with my family. I think maybe a once every 2 or 3 months email to let them know I did not off myself is safe enough. So at the end of the summer I will try again with the emails. It is very unfortunate that I am so busy with school this week and my next weekday off is next Monday. I plan on calling 3 different hospitals to try and find a support group for either CH or chronic pain. If I cant find one then I plan on doing my best to start one. I have a friend here who is a priest and she may let me use her church for a meeting place. I refuse to roll over and have the word doormat tattooed on my back. I hope we ALL have an either low pain or a pain free day depending on our situations and Big American Bear Hugs all around! Nobody hugs like Americans in my opinion and I am happily hugging all my friends and family thats left. Including my CH family. Sorry for being so sappy but I think it is reaction after the hatemail and knowing that I am not a pain in the part you sit on. Just in the head. Sophia :)

Sophia, Here's something to work on for awhile...you never know:

Dr. Wright’s Circulatory Technique

What follows is a technique learned from a neurologist:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I hope this technique is helpful and I wish you the best of luck

Charlie      

"Hang in there please, as alone you may feel, you truly are not!!! "

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