Thursday, October 1, 2015

Being a Cluster Head as a dad, son,spouse, friend, and stranger

I often write about the effects that Cluster Headaches has on myself or what it has done to me in my life. What I have not written about is how we are as a Cluster Head by being a parent, child, friend and stranger to others.

First and foremost.
It is not our fault. No that is not a cop out or an excuse for our behavior. It is simply stating we didn't choose to be sick, Nothing that we could have done to prevent this. There is no rhyme no reason why any of us got Cluster Headaches episodic or chronic. Unlike migraines and tension headaches which are traditionally hereditary. Yup. I get those too. All 3 inherently different. (To learn more about the differences read blog " Cluster Headaches are Not Cluster Migraines, Migraines are not Cluster Headaches" ).

One day, we wake up and experience the worlds most painful disease without warning.  We have this attack not know what it is, why its happening or understand the severity because forming a thought is 100% impossible. Our only desire is to have the pain stop. Now some go years or decades before diagnosis. If you are shit lucky. Under 5 years you are diagnosed. Then your body continues to a prescribed funnel for every pharmaceutical known to medical science. Because we have exhausted every single store bought pill. Our lives are forever changed once diagnosed. For me my diagnosis (see blog "My Diagnosis....My Tooth....Where it all began..."). And then we must cope with the disease with knowledge of we have or now a label. Another excellent blog to read is "The 5 Stages of Loss". Because this in itself is a process of accepting we are now sick, all while trying to deal with the disease.

But what I have not blogged about until now is our affect on others. I have discussed many times my abandonment of friends...opps I meant cowards. Which is guaranteed with any disease. We are not alone on this one. But how we are as sick people and how our disease affects people verdantly and inadvertently. It itself is a choice that our loved ones, friends, co workers and strangers react to us.

If you see a person walking on crutches trying to open a door to a store and we are behind them, Would it not be common courtesy to open and hold the door open for them? I know for a fact I would, or at very least offer to ask. So how do we affect others with our disease for a disease that is invisible?  If I was walking to a store and the door had to be opened and someone stood behind me, Chances are if they look at me they do now know I am sick. The onus is now on us to educate others that we are sick and there is NO SHAME in telling or asking for help. Its like my mental illness of PTSD or my wife being BI POLAR. Right now in the media with help from hero's like Clara Hughes a Canadian spreading awareness of mental illness. Its great because its wide spread and she is helping millions of Canadians by being proactive and spreading awareness about all mental illnesses.

I don't think I am saying ride a bike across Canada to say we have Cluster Headaches (or your country) and if you do. Awesome. But its four responsibility to tell others when needed that we are sick and what happens and what to expect and how to help. Its is unfair to get angry at anyone if we did not educate those around us and then have an attack and get no help, shock or disbelief.

I have said it before its perfectly normal and a ok to be radio silent about the disease. But don't expect help or empathy. You don't have to be broadcasting it like me on my blog or TV and social media like I do either. But being open about it may be beneficial to you.

The affect we have on others by being proactive can really help us. Not only be advocating a disease 99% of the world has never heard of but to explain to others what happens or will happen to us. This is an affect that will change the lives of others. Your family, loved ones, friends, colleagues, and strangers may change their opinion about you but that is their doing. They can either be very empathetic, helpful, or down right malicious and cowardly. I have experienced both.

My son at age 6 thought during the first year prior to diagnosis that I was going to die. I felt so helpless during my attacks and people around him had to re assure him I was going to be ok.  In time with explaining to him what was happening. He became and unsung hero to me. Rubbing my back during an attack. Getting me water, etc. Just being there to support, love and care for me, It sometimes took a few attacks in front of them for them to comprehend what was happening to me.

In my single life I hid it for a long long time. Then I would have an attack and the person would bolt. I tried desperately to hide my disease. I tried not to let it affect me. But no matter how hard I tried. I couldn't. It was either that, and never leave the house and be recluse. Something I wasn't.

I, as a son. Can not even fathom how my parents felt. Only helpless seeing their own son suffer horrendously everyday of his life. No parent wants to see their child hurt no matter how old they are. In time they accepted it too and offered to help as much as possible.

I am very blessed to have a wife who met me sick, stuck with me and did not disappear, run, hide, yet run to me when I have attacks. No matter how many sleepless nights I woke her up screaming at the top of my lungs in shear agony she never once complained she was tired or angry. Other people I been with polar opposite. The disease affects my spouse. Just as much as me minus the pain. Yet her pain is in inside watching me.

Work....people I worked with....even videos I made for them to see did not help. Trying to be self employed was worse because I tried so hard to hide it but eventually could no longer. Customers saw right threw me. I could no longer work the older I got the harder my life became. Friends. Sadly, Because I no longer could keep up, cancelled, came late or left early or whatever excuse stopped calling, inviting me.And so on.

My neighbors before diagnosis must have thought I hit my head every night with a hammer and yelled for no reason. Now all my neighbors know I am sick and won't call police if they hear me screaming. And if you are in a relationship and have cluster headaches it will be a true testament to your relationship if that person sticks around.

And lastly. Strangers. You may be in a public setting by yourself and have an attack. I had one in front of 500+ people. The day I believe I lost my vanity.

In essence, there is absolutely NOTHING you can do to others reactions to Cluster Headaches. Not family, not your spouse, not  friends, not co workers, not strangers. It is up to them how to react.
Truth be known that sadly we find out the hard way who really cares and loves for you. I found out who truly loved me and who didn't care about me but only them self. And as upset as you will be.  It is ok because in the end you will find people who really love and care about your well being. It could be a fellow survivor or someone who comes into your life. Do not loose hope.

Many days I thought why me. its not my fault this happens to me but then I think about holding a door open for a guy in crutches. We should be holding the door open for someone who is not using crutches. We do not know what people are going through. In 3 months this year I had lost my dog, and mom. Teenager issues. I mean I just visually look like a big guy but no one knows the torture we endure. No one can see it. So why not educate others, inform them, educate them before an opinion is made. Help others know. Then it is up to them how to deal with us. Perhaps we will see their true colors. They may run and get our oxygen, med's or whatever or run the other way. Either way its a blessing as tough as it may seem at the time. We can not possibly be angry or upset at others for now knowing about our disease if we don't educate them and don't expect people to help if they don't know how to help. Its a heavy burden put on us being sick but also to explain, educate to others how we live sick and need their help. Sometimes the best help is just being a decent human being.


  1. Tom:
    My son is 26 years old and has been a chronic CH suffer for 8 years. We have tried all medications and surgerys including a DBS from Mayo Clinic. This year we have to change the battery in the stimulator and it will cost about $30k to $40k. It only provides about 10% to 15% relief and seems to be decreasing as the body gets used to the voltage. Do you know of anyone who has tried LSA or Mushrooms and if they work. I did find a Harvard Medical study that claims an 85% success rate for LSA with not very many lasting side effects.

    1. Robert, please read the rest of my blog you will find incredible information regarding the medicinal use of mushrooms.