Monday, January 21, 2013

Inhumane pain-explaining Cluster Headaches to non sufferer

Cluster Headaches aka Suicide Headaches, formerly Horton's Neuralgia.

How does one with Cluster Headaches explain to a non Cluster Headache person?

To be perfectly honest there are many I have heard over the years. From Suicide Headache, Ice Cream headache, Ice pic headache and more

It has been described as 30x more painful than child birth. Described as worse than being burned alive. Similar to being shot point blank and living.

Imagine this, and being chronic like me.

How can we describe it? Some have said its like a drill being drilled into our eye. The devil ripping out eye out.

Its inhumane(my opinion), unfair,unjust,cruel, and ad Dr.Peter Goadsby professor in neurology describes it....."Worlds Most Painful disease known to Medical Science".

As a chronic survivor. I can honestly say after breaking 4 bones in 1 year. Having torn all the ligaments and tendons in my left ankle and stuck using a cane for almost 2 years and with all the cuts,bumps,bruises,operations I have had in my entire lifetime. It does not even compare to one single Cluster Headache. Not even a bad one.

I hope this gives an iota of insight into what we experience.
Not all our attacks are the same. Some range from being able to concentrate and have a conversation to putting my head through drywall and ripping my head board off my bed for semi bad attacks to not being able to control a single thought other than scream in pure agony as I roll around on the floor at the top of my lungs uncontrollably. If my house was on fire I would burn to death.
It is 100% impossible during a severe attack to do anything.

There is no such thing as go lie down, take a pill, be quiet or anything to help. Being sound asleep in rem sleep and being woken up like a Firetruck run me over or being at a rock concert has no significance to when or where these attacks are worse or have any affect on severity.

The problem with Cluster Headaches as I said this before as quoted from my hero "Michael J. Fox" is that its like standing in the middle of the street with cement shoes and you see a bus coming. You know its gonna hit you., you just don't know how hard.!

My attacks start in my right upper gum of my teeth in the trigeminal nerve area. Then within 20 minutes of a slight shadow affect will run to my right eye. I never know how bad the attack will be or how long it will last. Anywhere from 30 min to 3 hours long. On average, minimum 1-1.5 hours.
The attack on rare occasions comes full tilt about 10 min and hammers me hard sometimes. If I am in public, I like to leave and hide as fast as possible. For me vanity went out the window a long time ago. BUT it can scare children and some people with them not knowing what I am going through. I had a public display once in front of 500+ people at a car show and it was embarrassing to say the least. My feelings hurt far worse after as no one came up and asked if i was OK or needed help.

The body or mine at least goes into fight stance. I have never been a flight type of guy so naturally I fight my attacks. I don't know any different. A 1 hour attack feels like a sold 8 hour shift at a factory from fatigue. A 3 hour attack and I could be lazy for days from pure exhaustion. Taking certain medications cause rebounds and makes me sick on top of the attacks.

I have tried to even my sweet wife, my son who is my pride and joy and they can not comprehend what I am telling them. I have tried to explain to friends. No success. Hard headed, no compassion makes it tougher to explain as they don't care. Very few people(on 1 hand I can count) that I am not related to actually give a crap or try to understand. I have lost friends over the disease and heck its OK because they were never true friends anyway. Only cowards. They wouldn't last 30 seconds with an attack before putting a bullet in there own heads.

On 2 occasions I have heard of suicide first hand. I read somewhere there is over a 75% suicide rate with the disease. I have written in my blogs about this.See blog RIP. If a human being commits suicide over this disease than that should be enough proof its serious and evident.

I am not writing this blog today in spite of anyone nor am I asking for 1% pity. I have never sought pity at all for any reason. However I am writing this blog today so that other survivors whom have friends, family, co-workers read this so they have a 3rd party first hand experience proof that what we have is 100% for real.

I was contacted 2x in one week about this. One was a little child surviving these attacks. No one believe him not even the school nurse. Kid was told they were just exaggerating a simple headache. Disrupting the class and was on verge of suspension. 2nd was a high school kid. Same thing. Loosing friends fast. Family in disbelief and shock. I hope this blog today verifies 1st hand the severity of the disease.
By all means do not read this blog and think we need or want pity. Not the case. Understanding and compassion absolutely. I also recommend reading my other blogs on how to cope and live with this dreaded disease as well and not just focus on the bad.

Most of my blogs I try to write inspirational, be positive, uplifting and think outside the box. Today, with sadness I must tell the bad side to the actual attack. There is allot more this disease has robbed me health, ex wife,friends, work, and more. But this isn't about that. I want to clarify how severe this disease is, what it does, and how it feels. We seek no pity. Just understand what we are dealing with is the worlds most painful disease on the planet.

Showing, love and compassion goes along way.
Here is a video from Dr. Peter Goadsby explaining the medical standpoint of the disease.
Please again share my blog and lets spread awareness, despite today's horrific negative blog I hope it turns opposite and helps others that are surviving and trying to explain to others.



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  2. As a chronic cluster headache sufferer of 8years now,I totally agree.I,'ve lost everything to this disease. My relationship, my family life,my career,any form of social life,and my dignity. I have failed to secure any type of disability benefits and I cannot afford to join any support group or organization. Not only have I been a daily chronic sufferer with no break for the past 8years,I also have to shoplift food daily so I can pay my bills. Looking at the big picture I think poor people with this condition would probably be better off if they was humanely put too sleep as to stop any long term physical and mental torture!

    1. Depending on where you're located at, it is possible to get disability for cluster headaches. I know, I'm on full disability due to chronic clusters. You also don't need any money to join a support group. There are many free support groups online with people going thru this same shit. Come and join us for free on Facebook and learn alot more: Also, Learning how to cope with this horrible crap is a thing you can and must do. You can't let clusters rule your life ... come and learn how to deal with it so you can LIVE your life.

    2. I've been having these things since early September of 2016. They are far above and beyond any pain I have ever felt; they are literally hell on earth personified. My doctor prescribed me lidocaine nose drops, which help about 25% of the time, roughly. I keep a journal of what time they start/stop, and the severity. Each month is the same thing: more headaches than the previous month and more intense (as hard as that is to imagine). For example, today is the 21st of January, and I've already had more attacks than I had in December. All I know is, this has got to stop. My life revolves around recovering from these terrible things, as they leave me totally exhausted. For those of you out there who also suffer from these horrific things, know that you're not alone, and even though we've never met, I sincerely mean it when I say my heart goes out to you.

  3. It's time for a blog titled "Coping with Clusters" bro. Thanks Tom

  4. Just finished up with one. Its 330 in the morning. Nobody that is up at 330 in the morning is thinking happy thoughts....

  5. Hoping you're doing better. Getting hit hard here. Out of meds soon. Insurance won't pay. Life's a beach.
    "Sleep. Those little slices of death. How I loathe them." - Edgar Allen Po