Cluster headache – do you know what it is?

Cluster Headache

Do you even know what it is?

Cluster Headache, a condition that is extremely rare. A condition that is extremely painful. A condition that not many of us know about. A condition I never knew existed until I was diagnosed with it.

June 11th – 13th 2013, I was on a plane heading back home from an amazing cave diving trip in Mexico. I had an attack which I later learnt was called a ‘Cluster attack’. I was sitting down when suddenly I was hit over the right side of my head with the most incredibly pain. No, I was not actually physically hit by something but it did feel like someone had smacked my right temple with a baseball bat. The pain location was behind the right eye and temple and no-where else. The pain was so intense I vaguely remember much after this point until I was being carried off the plane on a stretcher and taken to the nearest hospital by ambulance. A friend who was travelling with me (who I’m extremely grateful was there) filled in the gaps when the pain levels dropped. I was screaming, crying and rocking and rubbing my head against the back of my chair. They moved me to the front of the plane where I was lucky enough to receive Morphine x2 hits and oxygen until I sort of regained consciousness.  This was the start of a new life for me that consisted of chronic pain and attacks that were so severe that I would be rushed to ER on multiple occasions.

I’m not going to bore you the numerous doctor appointments, hospital doctors and a less than rude Neurologist. I am however going to tell you about the pain and the impact it has had on my life. I will tell you of my lowest times during the past year and the reasons why the name ‘cluster headache’  does not even come close to being a suitable name for what we, as sufferers experience either in the cluster periods or on a daily basis of a chronic sufferer.  I will tell you of MY experience with the condition however will not tell you that my words will explain the pain and suffering of someone else.  I am trying to raise awareness of a disease so rare and so extremely painful known as “Cluster Headache”

If you googled this condition you will come across numerous statements such as “It is one of the most painful conditions known to medical science” and “women who have had children and suffer from this condition will say the pain is worse than child birth” – if this is a common belief to researchers and medical practioners, than why are we left with a the pathetic name of ‘Cluster Headache”? Why are we left with trying to explain to family, friends and co-workers that a headache is ruling our life either intermittently or indefinitely. That a headache is the reason we can’t go out to dinner, again. Or call in sick for work, again. Or not go and see my horse, again!  Are you getting the picture? When you are using the excuse of ‘I have a headache’ so often, people start to roll their eyes and dismiss you. They start not inviting you to go places because they know you ‘wont’ go. They are right though so how can you blame them for that? A ‘simple headache’ is stopping me from planning ahead because no, I have no idea if I will be well enough to go.

After the first time a Cluster headache hit me back in June 2013, I have not been 100% pain free. Again, no I am not exaggerating. If I am having a good day, I will still have a headache but it’s so small in comparison to what I call my ‘daily ache’ that I’m so happy and close to being my normal self than I can completely forgot I have that background pain and can get on with doing as much as I can possibly do before that ends.  My ‘daily ache’ sits between mildly annoying /slightly uncomfortable and moderately uncomfortable/hard to think straight. During the day I will get numerous hits of SUNA attacks, a secondary condition known as Short-lasting Unilateral Nueralgiform Attacks. The attacks last roughly 30-60 seconds and will literally instantly stop me from whatever it is I am doing for the duration of the attack which consists of extremely sharp pains to my right side forehead and behind my eye. My eyesight will blur and all I am thinking about is trying not to pass out. Its takes me a minute or two to recover from these attacks and continue as I was. So if you are talking to me and my head drops and I stop what I am doing for a little while, just be patient please as I am not trying to be rude.

Most days however, my headaches will start to increase and the right side of my face will start to droop. My right eyebrow will drop and my right cheek will go numb. This is a sign that my headache is going to start getting extremely uncomfortable soon and I need to get onto the medication quickly before it does. If the pain responds, then I am having a good day! I can mostly continue working and just get on with my day. My medication is not a couple of Panadol pills. My meds to deal with these raising pain hits are:

  • 3x dissolvable Aspirin Forte tablets
  • 10-45x Tramadol oral drops (for quick absorption)
  • 1-2x tramadol 50mg capsules to top up if required.

The above it pretty much what I take daily, limiting the Tramadol use as much as I can of course to avoid dependency and the side effects which for me are dizziness, light headed feelings like I’m high on something else,  nausea and feeling hung-over when it starts to wear off.

However, if the pain does not respond, I need to get home immediately, take a Sumatriptan tablet, get into bed with my oxygen tank by my side and wait. I have to wait until the pain peaks. This will take 30-80 minutes which consists of uncontrollable crying, shouting and rocking. It hurts to move my eyes, it hurts to move and hurts more to stay still! The pain is located behind my right eye/ temple and right side of forehead. The right side of my face a dropped completely.  I cannot think of anything else but the pain and focusing on not passing out. I have learnt over this year to monitor the pain and as soon as it starts to ‘wave’ – where the pain will ease for a moment before increasing again – then I can turn my oxygen tank on and start deep breathing. The oxygen takes 20 minutes to work and it brings my pain levels down to a point where I can think again and lay down and just stay still. When I can turn the oxygen off, I will usually sleep. I am so unbelievably exhausted by this point that I can do nothing else. My BP has plummeted which is a sign of long-term extreme pain.

I remember the second time I got a Cluster attack, I called my brother to come pick me up and take me to the hospital. I was home alone and was terrified I would do something to physically hurt myself. The pain was so high I could barely walk, I couldn’t open my eyes and was crying so much he had to pull over 3 times so I could vomit.  We got to the ER and I tried to form words and sentences to explain to the triage nurse what was happening. Once I was taken in they took me to a dark room thinking it was a severe migraine. I was put on fluids and then the doctor supplied oxygen which was when I first learnt that this was what I needed all along! Oxygen! They did some tests and when I was able think straight and form real sentences they released me. My head felt so bruised and I was so confused by the whole experience because I actually stayed half-conscious the whole time.

Now, I have experienced migraines before. My Mum also suffers from them. When I was little we went on holiday to Florida. My Mum got a Migraine and said she was standing on the balcony considering climbing over the rail the pain was so bad. My Dad took her to hospital and my brother looked after me and my little sister at the hotel. A few hours later she came back and just slept. She was so exhausted. I think back to this time now and seriously believe she actually experienced a Cluster attack. They gave her a drug which she later explained that – it felt like a wave of coolness coming up her neck, up the back of her head and over the top to the front. The pain was swallowed by the effects of the drug and drifted away rapidly. To this day, we both wish that she could remember the name of that medication!

The Migraines that I have had in the past I used to fear as soon as I realised they were coming. I used to get a visual disturbance about 20 minutes before the pain started. I would take Panadol and hope that I got it in time.  Sometimes, they would get me in my sleep and I would wake up in pain knowing it was too late. I used to dread this happening! The throbbing would come up the back of my head and consume the rest of it. I would vomit every few minutes for about 2 long hours and when it stopped, the throbbing pain would slowly fade. When I get a migraine now (yes, I still have them on top of my ‘daily aches’) I can work through it rather easily and try to laugh at my body because I have 2 different types of headaches hitting me at the same time!  I can’t really explain to you what it feels like to have 2 headaches at the same time so all I’m going to say is, imagine breaking your ankle and then tearing a muscle somewhere else but put both types of pain in one location… yeah…. It sucks doesn’t it?

Trying to live with a chronic illness, disease or any sort of pain is hard on anyone. Most of the time, they can give you the name of it and you will know what it is. However, for us, we tell you we have ‘Cluster Headaches’ and all most of you hear is the ‘headache’ part. All you can think of is the slightly annoying headache you had once that made you feel a little agitated while you were out at dinner. Or the migraine you had which made you lay down in a dark room. I appreciate the fact that every single person reacts differently to pain. I appreciate the fact that Migraines are extremely painful and debilitating. But can you appreciate the fact that, as a chronic sufferer of one of the most painful conditions known to the medical world, I deal with high levels of pain on a daily basis, I have not been 100% pain free in a full year, I am always uncomfortable and agitated at best and my body is riddled with medications that are there to try and keep me functioning. Trying to keep myself in an up-beat, happy, bubbly mood is exhausting so if you catch me on a day when I am just utterly over it and snap at you, please try to remember what I am trying to cope with, what my mind and body are trying to function through.

I try to stay positive and honestly believe that most days I accomplish the positivity and enjoy life. But when I am tired, stressed or just not feeling well, I will feel sorry for myself, I will cry a little and I do just want to be hugged once and just sit there with my amazing partner and watch a movie together, no talking, no moving, just sit there – together and just be.

This year has been extremely tough for me, my partner and family. Everyone around me has been as supportive as they can be and all of them take the time to listen. They take the time to listen to me complain and moan when I’m feeling angry and beaten down by the ever-lasting daily battle with my head.  I am so grateful that they are all here and a part of my life. They have seen me change from the happy, cheerful, bubbly and hyper girl to this rarely energetic and patience-less person I am now.  This condition has stopped me from going out to friends for dinner on most occasions and if I do get there, I can’t stay long. It has stopped me from riding my horse most weekends. It’s stopped me from being me, the majority of the time. There have been a handful of events that I have gone to when I’ve been having a pretty good day and just said ‘stuff it, going to make this count’ and go out and have 1 (or 3) too many drinks and had a blast. Paid for it the next day of course but hey, I’m young I should be out there enjoying myself. I make the most of the opportunities I get like this. I make the most of a day when wake up feeling pretty damn close to pain-free. I think I deserve a break every chance I get.

I wrote this to mark the first anniversary of my battle with this condition. But more importantly, I wrote this to try and raise awareness of the disease called ‘Cluster Headaches”. I wrote this so people can read, share and talk about. I wrote this to try to explain the daily struggle of living with this condition be it Chronic or Episodic. I wrote this to explain why the name of it is just pathetic and does not come close to expressing the pain that comes with the condition. I didn’t know ‘Cluster Headaches’ existed until I did extensive research into my symptoms. I read more and more about it and realised it was such a rare condition that approximately 0.1% of the population knowingly suffer from it. There is probably a fair % more that are suffering from it but don’t yet know what it is. I was lucky, to be diagnosed so quickly. I was diagnosed 8 months in. The average time it takes for diagnoses to occur is 3 to 5 years. The reason for this is because there are a number of conditions which mimic Clusters and partly because the condition is actually not even well known within the GP’s worldwide.

So, if you ever meet someone and learn that they are a sufferer, please remember what you have read here and understand this is roughly what they will be living with. Give them patience, speak softer and above all, listen.

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12 thoughts on “Cluster headache – do you know what it is?

  1. IIIILazAruSIIII

    I have suffered for 13 years.. I had a procedure performed in jo-berg (I’m in Australia) February this year, that involved cauterizing arteries near temple, eyebrows and behind ears, and 6 points embolised inside base of skull. I was awake for all. Have been headache free since then..

    Want to know more…

    Reply
  2. srmdwm

    Thank you for this. I watch my husband have these. I try explaining to doctors. … no is not a migraine. . No is not an allergy headache. It’s ridiculous!!!! I did alot of research because he was willing to try anything that might help because of course what they prescribe for migrations Does not work!!!! He started taking horny goat weed idk that it will work for everyone but add I’m writing this now I swear to you since he’s been talking it it STOPS THE CLUSTERS!!!### when he stops taking them the clusters immediately return! !!! He takes 2 twice a day. I’m not trying to sell a product at all but it has made him pain free and we both are thankful

    Reply
  3. Cristen

    Thank you so much for this amazing summary of “cluster headaches”. I have been suffering daily with them for almost 10 years. I love the way you put it all in to words …it is so hard to explain to those not suffering. Thank you!!!

    Reply
  4. Lou banholzer

    Great story, girl! I was diagnosed in 2008. Life, as I knew it, has never been the same, nor do I believe it ever will, but it’s stories like urs, that in some strange way, make me feel better. Just reading the words, of other people, describing the exact same pain & HELL that I live with, on an everyday basis, somehow gives me comfort! Sounds evil I know, but I’m not meaning it that way at all! Guess it’s just nice knowing that ur not alone in this, which is how I feel during every attack. Its just me against the Demon, then u hear words like urs & it seems, we, the others who have them, are all we have, each other, to help us get thru this everyday battle. Ty, for sharing ur story & I hope it brings some comfort to others, as it did me. Good luck to u & never give up! We can’t let the Demon beat us!

    Reply
  5. B. Jordan

    Thank you for sharing my son has been diagnosed and suffers from this so you have helped me understand more about his condition. 🙂

    Reply
  6. John

    Very good read . God be with you. I have been a chronic cluster head 28 years ( 8 to 10 a day ) No fooling 28 years. I understand this pain

    Reply
  7. Denise

    My husband has been suffering since 2006. Our whole life has been altered. Oxygen therapy seemed to be the most helpful with Tramadol at times. He had been through so many pharmacological treatments and the Doctors had run out of options. He had a nerve block in April. The headache moved just past the point of treatment. In May he had a Gamma Knife procedure done. It was mostly covered by our insurance. I have some copays but I’d rather be paying for that than other things. Although he is not headache free, I do see a great improvement in his status. The neurosurgeon said that he should see results for some time. Told him to give it 4-6 weeks. It has been 4. I’m glad he did it. Thanks for your blog.
    Anyone else suffering out there who cant find a doctor to believe you, KEEP LOOKING!!! We had to go to a bigger city hospital, a University hospital, to get results. There is a diagnosis and some hope.

    Reply

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