Tuesday, February 19, 2013

Fatigue, dispair, exhaustion after cluster headache

Last night was no different than thousands of nights I have had in last 7+ years. Wow hard to believe this summer is number 8. Anyway, I am wiped, worn out, fatigued, and tired today.

So if days like today. I am a tad irritable, a tad short, a tad moody. This is why. I mean no harm, no foul. No disrespect. And not to be a D*ck to anyone. I really don't.

If you truly know me. I love to smile. Today it is hard to smile.....

I know tomorrow is another day. I know I am blessed today but its hard to feel blessed.

I have faith. I have hope that one day this will end. If I am not smiling today, it will be tomorrow.

This video was 1am last night, only a Kip 8.Yes sadly they get far worse than this. It was the tail end of my attack. And as always my beautiful wife is always by my side. She reminds me with her touch on my head how lucky I really am. Why I fight. And continue on.

These attacks yes will make me. a 6ft1 260lb man drop to my knees in an instant wishing I was dead most days. I do not wish these on my worst enemy. Video for educational purpose only not pity.


  1. Bless your heart! That brings tears to my eyes just watching-Im having a tough time myself this past week! Sending you my best, brother! ((Hugs))

  2. You are one strong, inspiring man. As i man myself i rarely cry about anything. Watching innocent people like yourself suffer like this is one of the things that make me cry so bad. I feel so bad for you man, like seriously your such an inspiration to people like us who think breaking a finger or spraining an ankle is bad. Love from the UK man. Stay strong buddy!

    1. Jeff and Shellie, thank you very much.
      Don't laugh I sprained my left ankle and torn all the tendons and ligaments, by falling 6ft into a pit,2 weeks later broke my right hand, 6 months later broke 2 toes, and a rib. All combined dont add up to a mild cluster headache. All those bone breaks, and tears were a walk in the park. I would gladly break a different bone in my body every single day of my life than have 1 more cluster headache.
      For me vanity left a long time ago. I dont mind being the face/voice for us survivors.
      God bless

  3. Hi again Tom, Iv been reading through some YouTube comments and websites with sufferers like yourself to try and help you guys. What i have realized is that whats common with you and other sufferers is some sort of accident in their lifetime. Some have been involved in car crashes, some tripping up and falling (like you said above), and i honestly think that this has a direct link to Cluster headaches.

    Not long ago i read a YouTube comment who is also a sufferer and he said "The cause is whiplash syndrome, which stretches the spinal cord and compresses the brainstem".

    I read a bit about whiplash syndrome and guess what? It links to crash crashes and accidents. Most people who get it can live their whole life not realizing they have it but what i think is that others who have it can get side affects aka "Cluster headaches" like yourself.

    He also said that its defiantly curable by a Chiropractor, but i think you need to find a very knowledgeable Chiropractor that actually knows what hes doing/talking about.

    If have have a visit with a doctor soon, as him where the best Chiropractor in your area is. Try giving that a shot.

    PS. Tom have you tried taking Magic Mushrooms (the drug) before or during an attack, lots of people on YouTube say that can minimize the pain greatly.


    1. Jeff. My fall was years after my attacks started. No other falls prior to clusters.
      My GP,Nuerologist,Nuerosurgeon all said to stay the hell away from chiros. I didnt listen and went anyway.
      No help. And then I had brain surgery 4x.
      I tried every known drug. No help.
      I will never condone or codemn drugs but if you read my blog on my choice to do surgery you will see why I am dead against drugs/
      in my dying breath i will never do illicet drugs.
      Personal choice.
      thanks for writing and caring.
      God Bless

  4. I only found your blog today, but yes i will defiantly read your previous posts. Keep us updated man.


  5. I am in the 8th week of the worst cluster I've had in my 35 years of suffering from them. I have been through two rounds of steroids and am taking tons of verapamil. Woke up with a killer (kip 9) at midnight and am still beaten up. My heart goes out to you -- I just keep hoping that as summer arrives tomorrow, my historically "spring only" clusters will finally disappear. Some day.

  6. Tom I am so thankful I found your blog. I like you suffer from Cluster Headaches as well. I was in remission for about six months and they have now returned. Watching your video looked like I was looking in the mirror. I haven't had any surgeries yet but am trying a new neurologist on July 10. I found your blog by typing in "exhaustion from cluster headaches". I completely understand how they bring you to your knees. Being a Marine (not active anymore but no such thing as an ex-marine) I am not unfamiliar with pain, but unless you experienced one of these people really have no idea. I am a Christian man as well and will be praying for you. Thanks again for your blog.

    1. Semper Fi buddy...oooorah.
      I tried to enlist in Marines when i was 18,wouldn't let me as a canadian.
      sorry to hear they are back. might be a good read on my blogs on Busting.
      If there is anything i can do to help let me know
      Pain Free Wishes

  7. I am a 50 year old woman, recently divorced and living alone for the first time in my life. I started having cluster headaches 5 months ago. It took 4 months to get a diagnosis. I started verapamil 3 weeks ago and have had some improvement; less severity and frequency. My doctor just tells me to wait for the medication to work and is very dismissive when I tell her about my pain. She and two of my other doctors are aware of my pain and of the fact that I have been suicidal, have a plan and the means to carry it out. I have told my son and my Ex that I would only hang around for as long as I can, but eventually I will be out of here. All this and nobody has any better option to suggest to me.

    I am left now with a constant headache with flairs of sharpness. My brain feels like it is rotting like a bruised piece of produce. I'm still waiting to see if it will ever go away. I heard that cluster headaches come in cycles, leading me to believe that it is going to go away eventually. I really cannot entertain the thought of continuing to live in this state for the rest of my life. I really don't feel I have any reason to.

    I am worn out, exhausted and weak all the time. I don't feel strong enough to take care of my personal needs most of the time and my housework has suffered.

    As bad as I feel it doesn't come that close to what you go through in your video. I was suicidal when my headaches were at their peak. I know I would commit suicide if mine ever got to be like yours. I lead a very isolated life. I only have my son, who has his own life to deal with. Suicide is the most reasonable option for somebody who has many chronic illnesses as wellas cluster headaches, and has little reason to live anyway. This a lonely, painful, miserable existence. Just waiting for the day when I am ready to exit. I have a bottle of antifreeze and a bottle of Mountain Dew in my closet. God Bless You for keeping up the fight and having people in your life who care about you and give you a reason to hang on.

    Anonymous name to put the truth out there for others to see and learn about just how bad this is and how people really feel. I am in now way seeking any kind of pity or attention. I am simply being honest about my feelings and intentions in hopes that others may in some way understand just how bad this is; putting into words what is shown in your video.

    1. Hi, thanks for your post. I empathize 100% with you. I beleive you. But your life is way mor eimportant than the pain you endure You are way to valuable to end your life over clusters. I have over 12 years under my belt. And a lifetime ahead of me....There is other options. Get OXYGEN 100% pure oxygen with a non rebreather mask, at 15 litres per minute. NOT a nasal canula. Also there is effective succcess with a vitamin D3 regimine. And most importantly many are finding great relief with psychedelics. Please check out my youtube channel I did a vlog on it. search "ClusterHeadSurvivor" (no spaces)...I do a vlog called People In Pain, about living positive in chronic pain.
      As for being considered chronic or episodic, You will find out in a years time. I was chronic since day 1.
      1. Get prescription for oygen
      2. research and get onto the D3 regimine
      3. educate yourself on shrooms if its an option for you.

      ***Join www.clusterbusters.org ****

      I know it seems really hard. It is...Will it get better? You end all possibilities of making things better by ending your life. Suicide is a permanent decision to a temporary problem.

      Pain Free WIshes

    2. I cant believe I forgot, ORDER immediately my friends book "Cluster Attacks"she is a cluster head as well as her fiance. This book is the cluster bible for any cluster head. The information in this book is invaluable. It covers A-Z....order here www.ashleyhattle.com
      I own the book and recommend every cluster head owns it.Especially neurologists world wide.

  8. I feel your pain I'm 31 and have had cluster headache since I was 18 it's been a few years since I have had them well they are back and man I don't miss them I feel your pain and everybody else's pain it's hard to live when your going threw it, you just want to end it but we can't life goes on in pain..we got this my brothers..