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What’s your cluster headache base?

It’s my belief that in order for you to be better able to try out the techniques we will discuss here, it’s necessary to know what’s your cluster headache base is. In other words; where are you in your cluster headache journey. Once you know your base, you will better understand yourself and the cluster headache, and you can start to build from there.

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.

Laying the foundation

Diagnose

Since you have found this site, you either have cluster headache or you know someone that does. So I think it’s safe to assume that the diagnosis has been made by a doctor, and you are currently under their supervision, and taking medication. If not, start there; get a diagnosis from a professional.

Doctor
Controversy

Some of the things that I will share here will be controversial, and might even go against everything you know or belief. I’m very aware of that. Yet it’s also true that no doctor can actually help you. The only thing they can help you with is combating the symptoms. Like I said before, my doctor literally told me; “It’s a genetic defect, we don’t know the cause”.

I suggest that you read through the entire cluster headache part of the site. That way, you will know what I did, and what it will take if you decide to try some of the things I describe. Because it will not be easy. You will have to fight for it, and you might get resistance, from your loved ones, and perhaps even your healthcare professionals. As this may require you to rewire your beliefs and convictions on clusters and maybe even life. It did for me.

4 points that will define your cluster headache base

On my journey I have found that a lot of the treatments for us clusterheads are an outward treatment, meaning injections of sumatriptan, taking verapamil or lithium, a gon blockade of the nerves in the neck etc… What I did was very different. I journeyed inward, as it is my belief that there lies the root of my disease. But before we do that, we need to know where we stand on these 4 points;

  1. Phase; in what phase of your cluster headache are you?
  2. Triggers; what are yours and how to find them
  3. Medication; do you have the right meds?
  4. Alternatives on medication?

1 Phase; What phase of your cluster headache are you in?

​To understand your cluster headache base, I think it’s important to recognize what phase of your cluster journey you are in. Every phase is a valid one and everybody moves through them at their own pace. I’ve divided them up into 4 phases;

  1. Denial
  2. Anger
  3. Depressed
  4. Acceptance
​Denial

This is the start for every ClusterViking I believe. We have our first attack, and if we are lucky we are quickly diagnosed. But even when we are not diagnosed we tend to deny that we are sick, that something is wrong. Looking at my own life I have denied my clusters for a very long time, multiple years even, in which I fiercely tried to continue life as I knew it. There is nothing wrong with this, this is actually very logical. It happens to lots of people that fall ill.

Anger

This can go hand in hand with denial, or can come right after denial. You are frustrated and angry. Angry at the world, at your body, at your surroundings and even your loved ones. You feel that it’s unfair that you have to go through this. It’s difficult to see your life coming to a grinding halt whilst the world and the lives of your loved ones continue. You perhaps feel trapped within your body. This is where a victim mind state can manifest. Read more here, or continue reading, I’ll get into that later.

Depressed

Your overall spirit is beaten into a pulp, and you are depressed. Life seems to be pointless, there is only pain. Cluster headache dictates (most of) your life, and you are grieving over the loss of your former life. This takes time, but is necessary. The truth is you can not continue the way you did earlier.

Acceptance

The grieving is finally over. You have come to terms with the fact that you have cluster headache, and that you have a different life now. Life is difficult to manage, and you feel like your back is against the wall. You are surviving.

​Knowing in what phase you are shows you a part of your cluster headache base. You can start doing some of the things I will suggest later on in any phase that you are currently in. Yet I do believe that the best results will be made once you have accepted the cluster headache. That’s the point from which you truly accept that your back is against the wall.

This will motivate you better to accept that the life you knew is over, and you need to chance. But maybe you are able to change in an earlier stage. Because that’s what it will come down to. Taking accountability for the things that you can influence.

2 Triggers; What are they, and how to find them

​Triggers are things that provoke an attack. They are the second part of your cluster headache base. The most commonly known for us is alcohol. The reason why it is important to find out what yours are, is, so you can avoid them.

​When I was diagnosed the neurologist told me about triggers and suggested I keep a dairy to find out what mine were. For multiple reasons I did not do that.

Journal

And that cost me, a lot. I kept walking into the same triggers just because I did not record them. I know it might be difficult to do, it was for me too. It felt like an extra chore to do whilst already living a nightmare. I get it, but please be smart, take notes, make a trigger journal. Log there the date, time, location and what might have been the trigger.

In time, you will start to see a pattern. By avoiding the triggers you will greatly improve your life. And yes it sucks that you can’t have a beer, or that piece of chocolate. But I truly believe we will be able to enjoy those things again, with time perseverance and dedication to ourselves.

You can learn more on 12 commonly known cluster headache triggers here

3 Medication; do you have the right meds?

​The third piece of the cluster headache base is your medication. Getting the right medication is very important. For several years I had medication that actually made the cluster headache worse. But it took me some time before I figured that out though. First I used the sumatriptan injections, and later also the pure oxygen. Both made the attack go away, but the attack would always come back within 2 hours and be twice as severe. Once I quite both those meds, I went from 8 attacks a day to only 1 or 2 attacks a day.

Besides that, my first neurologist proclaimed that sumatriptan was my only weapon against the cluster headache. I did not question him. Once he retired, and I got a new doctor, and a world of new medication became available to me. So please don’t be afraid to open up the conversation with your doctor to discuss alternative prescription medications.

4 Alternatives to medication

As many of you know there are alternatives to be found as an addition to your medical medication. These alternatives are the fourth part of the cluster headache base, and range from crystals to drugs. I would always advise you to communicate open and honest with your doctor when you are trying out these alternatives. Especially when you start to experiment with drugs.

​So what alternatives are there? For me, it came down to these alternatives, but perhaps you have some that I don’t know about yet.

Crystals

Especially the amethyst. These purple crystals have been of help to me when I was just starting out in taking a different approach to my attacks. I used to hold them about 5 cm or 2 inch from the place it hurt the most, and I could feel them absorb some of the pain/energy. Sometimes they even became warm. They changed color after continuous use, and I had to wash them with water to have them regain some of their potential. 

Drugs

Mushrooms. Mushrooms are I think the most commonly used drugs to try and fight clusters, or to break down a cycle. The psilocybin in the mushroom is what seems to have a positive effect on many ClusterVikings. You can use a micro or a macro dose. With a micro dose it will not really affect your ability to function normally.

When you use a macro dose you will experience what is known as a trip. If you are going to do a macro dose then make sure you are at home, feeling well and somewhat rested. Besides that it is always smart to have someone there with you that is sober. Once you get more experience you can use it on your own, yet I’d always advise notifying someone that you will be using.

​LSD. LSD lies within the range of mushrooms, yet is an artificial drug instead of a natural one. The effects are (at least to me) stronger but very similar. LSD can be used with the same purpose as mushrooms. LSD, like mushrooms can be used in a micro or macro dose. With LSD also always inform someone or have a sober person present.

Cannabis. This come either in oil or in a smoke able form. I think most people will know this drug or have heard about it. It can bring relief, yet studies also point out it can damage the nerves. What I have heard from other clusterheads the effect varies. For some it’s a relief, to others it’s a trigger.

Now you have your own cluster headache base

This is the foundation of your cluster headache at this moment. With these 4 point you will create your personal cluster headache base from which you can start to try out different things to see how they develop.

What is my cluster headache base?

My cluster headache base is the following. I have gone through all 4 phases and accepted cluster headache as part of my life. Besides using verapamil on a daily basis, I from time to time, use micro or macro doses of LSD. From the alternatives I’ve tried, LSD has the best effect on my cluster headache.

I fairly know my triggers; Cigarettes, alcohol, histamine, and not eating enough/energy need, those are almost always instant. Besides them; sometimes weed, bright sunlight, naps, old cheese, chocolate, paprika. To log attacks I use the migraine buddy app.

Now you have your own base to start off from. Keep an eye on it as it may develop and change with time.

My personal experience

It took me several years to go through all the phases that I have described. Only looking back was I able to identify them as such. I hope my description of them will help you identify where you are and provide you your own cluster headache base. You can start doing what I did at any point, and I hope that with the knowledge here you are able to better your situation regardless of the phase that you are in.

Knowing the phases you will understand why you feel the way you do, and it might explain some things for you or why things I suggest might not work (yet). But honestly I don’t know. Like I said earlier; if you try this you are a guinea pig, so please inform me on if it’s helpful or not, and we can fine tune from there.

The journey I had with the medication is a whole story in itself. If you are interested I’m willing to share that with you but for the intention of this site it is not necessary. It would only give some insight into me and my journey/life.

Verapamil that has worked very well for me. But the alternative medications have also been of great benefit to me. I have experience with all of them, and it’s my belief that they are of greater use than the regular pharmaceutical drugs. Especially LSD and in a minor way also mushrooms and cannabis. But that is my opinion, not a fact. In time, I might dedicate a separate post to them to describe my personal experiences and what those experience have done for me. Let me know if this is something you are interested in.

Lastly

Now you know what I did with these 4 points, you can make up your own mind. You can decide if there are things I did, that you might want to try out for yourself. Now you might (if you have periodical cluster headache) want to wait until your cycle has stopped before you start implementing some of the techniques discussed later on.

Because you will be more rested when not in a cycle and better able to practice them. Thus, you will be familiar with them as soon as a new cycle begins. But of course it is not necessary, you can start today if you please. But I would advise you read all cluster headache post before you actually start.

Once again I feel obligated to tell you that I’m in no way a medical expert, and I’m still under supervision of a very open-minded neurologist. He knows all about me using said alternatives and is very interested. The 4 points will set a base for you.

For me, from that personal base (only using verapamil and amethyst at first and years later also using mushrooms and LSD) I stared handling the clusters in an unconventional way. And from your personal base, whatever that may be, if you choose, you can start your own alternative approach of clusters. In the next post I’ll describe how I handle the attacks.

Remember friends; you ALWAYS win!