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A do-over with cluster headache

In this post I will try and summarize what I’d do if I had a do-over with cluster headache. I hope I can set out a way for you to start implementing the things described in the other posts.

Disclaimer; I am in no way a healthcare professional. Everything I discuss here is based on my personal experience. What I describe are my personal experiences and opinions. What you do with the information on this site is entirely up to you. Things that have worked for me might not work for you, as everyone is different. I would always advise you to keep in contact with your healthcare professionals and be honest with them if and when you decide to try some of the things that I have done.

It has been a long journey

If you have made it through the cluster headache post, you know all the things I have done in the past 15 years to find my way. It has been a difficult and challenging journey to say the least. The time has come now for you to think about all this information, and to decide if this is a path that you might want to explore. The things I did might or might no work for you. There is only one way to find out. It will not be easy, especially at first as you do not have control over the cluster headache yet. So keep that in mind if you decide to try this yourself.

Man on a journey

Things I would immediately do if I had a do-over with cluster headache

A do-over with cluster headache with the knowledge I have now would be very different. I would advise you to do some things differently because I believe that you will gain the benefits sooner that way. I’ll put them in order by number, and you can start to implement them and build from there. This is not set in stone, and you might feel you want to do things in a different order. Feel free to adapt it to your circumstances and life.

1 Deeply think about if you even want to give this a try. If so try and commit to it. Understand that it will not be easy, not only for you but also for your surroundings and loved ones. Inform them on this, and understand that they might object to you doing this. Even once you explained your reasons and motivation. A lot of people are scared of what they do not know and understand, especially when it might go against doctor’s advice too. So be prepared for that, and then decide what you want to do.

2 I would make an appointment with my doctor to talk about wanting to do this, so that they know what you are up to. Ask them for advice about how to gradually quit some meds if that’s something you want to try. Then follow said advice. You might get a response that you shouldn’t do that. It’s up to you to decide what you will do, but always be honest about it with your doctor. Also inform how you can start up the medication if needed.

You know by now what my view on the medication available to us is. But that doesn’t mean that I think they do not have a place and purpose. Understand that if you would quit sumatriptan for a period and sit the attacks out, they should become less frequent. This can take some time though. So I would advise giving it that time (weeks to a month or 2). If nothing has changed then it works differently for you, they can be of great help, so please use them in that case. I find it hard to advise and talk on this topic, as it worked for me but might not for you, so please do what feels right for you. I’m no doctor, I just know my own case. But in my opinion it is definitely worth the try.

3 If you don’t already have one, make a trigger journal where you can log all your attacks and your potential triggers.

4 When they do not know yet, let your social environment experience a cluster attack. That way you will get more understanding from them when you need to cancel on plans.

5 You can immediately start with implementing the breathing techniques I described, both during and outside attacks. I would if I had a do-over with cluster headache. They will help you develop your feeling capability, and they will help you become more calm. You can do them daily as they only need a little focus and effort. You can do this in support of sitting out attacks, or just in general, either way they will always benefit you.

6 Monitor your sleep, try and figure out what amount of sleep is best for your body. This is usually between 7 and 9 hours. Once you know this make sure you get that rest as much as possible.

Woman a sleep

7 On that point, if I had a do-over with cluster headache, I would immediately start with setting a small healthy habit. Making your bed in the morning for instance. You will have completed the first task of the day, and you will get to go to bed in a clean and made bed. From there you can start to build in what ever direction feels right for you.

8 An other thing I would implement instantly is practicing gratitude. Every morning when waking up I always say thanks that I woke up and get to live another day. If I didn’t have a cluster attack that night I also say thanks for that. After that I make my bed. Again a very small thing but very easy to start with, and it has a great impact on the rest of the day.

9 Something a little more challenging is meditation, but this too is something I would try and start with as soon as possible. That’s because it will bring you many benefits, like more calmness, better being able to feel, insights in your life and problems etc. Meditation is difficult and takes discipline to develop, see it as a muscle you want to train. Start small with only a minute, to 5 minutes and build from there. One day will be great the next you will fail. It doesn’t matter all are lessons, just keep going.

10 Think about your life and the things you are happy and unhappy about, make lists. Then think about the life you would want to have and how that will look and feel. Make affirmations that support that future life and start reciting them.

11 If your inner dialogue is mostly negative, try and change it to a positive one. One way of doing that is reciting a mantra 3 times a day. Like; I am good enough, I love myself unconditionally, I am strong and healthy, life gives me endless opportunities etc. Make one for you that is in line with your affirmations.

12 Voice more of your opinion if you are like I used to be. Speak your mind.

13 Do more of the things that you enjoy.

14 Start exercising. This can be anything, even just going for a walk daily.

15 Try and (if needed) adjust your diet to eat more healthy and nutritious foods.

16 Think about your work life and how it affects other parts of your life and your clusters. If possible try and change things when needed.

This is how I would try and start out if I had a do-over with cluster headache. Like I said, change it to what suits your needs and capabilities.

It takes time

Please keep in mind that things will take time to develop and manifest, keeping disciplined about this is key. Having a bad day and not wanting to do it? Do it anyway. Even if it’s just for a minute, at least then you will have done it. When you stop, things will fall back to the way they were before.

Waiting

When you have made lasting changes to your life, which will take a serious amount of time, you will get to a point where you can relax a bit more. Some things you will feel you need to keep doing daily, others you can do less frequent or when you need to. You will know by then what they are. But my advice is to at first, and I’m talking for at least a year, be disciplined and keep grinding. That’s how I would go about it if I were to start over dealing with cluster headache.

Keep in mind that the world you see, is a mirror of who you are internally, and what you believe to be true. It will take time to see the changes you make internally as the world we experience has a delay. So don’t be discouraged when you find your belief has changed, but the outside world has not.

It comes down to a lifestyle change

As you understand this will probably result in a complete lifestyle change. It did for me. Cluster headache might not have gone completely, but you will be better able to handle them, I’m sure of that.

As said before self-love and acceptance for that matter have been of great positive influence on my cluster headache. I also believe those to be beneficial to everyone, ClusterViking or not. That’s why I will go deeper in to things like self-love, meditation, nutrition, exercise, organizing, and books on different parts of this site. But all in due time. So please check them out as they will extend what I have talked about here.

Personal

This is all just based on my personal experiences. And my experiences aren’t complete truths. Things will be different for you. So I would love to hear your stories and the things that work for you. It is my hope to come in to contact with other ClusterVikings who dare take a different approach, what ever that may be. And that together we can create a set of tools for our community that can co-exist with medical science. Hopefully the two can complement each other, resulting in a higher quality of life for all of us.

So please let me know how you fare, what works for you, why that is and what you exactly do. I’d love to be able to get in contact with you and possibly share your success story here with our community.

Remember friends, you ALWAYS win!