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Relationships and cluster headache

Starting or maintaining relationships and cluster headache are a difficult combination. Starting relationships may never flourish, and existing ones may crumble. Handling that can be tricky.

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.

Love relationships and cluster headache

Having a love relationship can be difficult in itself, let alone when cluster headache comes in to play. When you find a new love, the cluster headache might scare them off. And when you are in a committed relationship and one gets cluster headache, it can break the relationship. Imagine how difficult it must be to see your loved one go through excruciating pain again and again. It asks a lot from our partner. When the relationship can’t withstand the cluster headache, the break-up can affect you even more than it normally would. Relationships and cluster headache are a difficult combination indeed.

The break-up might even make you question if you are good enough and deserving of love. The answer is YES! Of course are you good enough and deserve to be loved. Having cluster headache is never a reason not to deserve love. You always maintain your worth!

My personal experience with relationships and cluster headache

I personally have experience with both. When I got my diagnosis I was in a committed relationship with my then girlfriend. We were about a year in to the relationship when cluster headache hit me. In honesty, I need to tell you that we did have other issues that were putting a strain on us too. But the cluster headache and its severity made everything worse.

Couple watching the sunset

My then GF and me were quite opposite to one and other. I’m introverted, she was extroverted. Like I said before, even the people you live with and love might not totally understand what you are going through. I experienced that with her too. She would always want to go out and do all kinds of stuff, have friends over, party. And why wouldn’t she? We were in our early 20s and life was one big adventure.

But I couldn’t keep up. I tried, oh god I desperately tried. This was my horror year of 8 attacks and sumatriptan shots a day, and I was becoming more of a zombie every day. She had difficulty accepting that, she wanted to enjoy life with me. As did I with her, but it was not possible with that lifestyle. Irritations raised, and I reproached her for continuing with her life as mine stood still. Maybe she too reproached me for not being able to give her what she needed.

It didn’t work

Anyway, the cluster headache in combination with the other problems made that we came to a point where we simply couldn’t continue. So we broke up. For me, it was another loss I needed to deal with, and I took quite a blow to be honest. It made me question if I was worthy of love in the condition I was in. In the aftermath of that break up I decided that if I ever were to find love again, I would go about it differently.

I don’t blame or hold a grudge against my former GF. She did nothing wrong. We were young and put into a situation that was way too big for us to be able to handle. Cluster headache is not only a hell for the ClusterViking, but also to the partner, children and family. When they are unable to deal with cluster headache then that is sad, but very understandable. Relationships and cluster headache don’t always last.

A different approach

After that relationship, I dated some girls. I was always afraid that the cluster headache would scare them off. Often it did. I would let them witness an attack and try and figure out if they would be able to handle this for a longer period. My experience with my ex-girlfriend lead me to believe that most of them wouldn’t, and I didn’t want to go through a similar experience again. So this was my new way of probing to see if I wanted to invest.

Woman leaving a man
New-found love; Arthur

When I first found Arthur I was still very shy about my sexuality and preference. I had moved on from my former relationships and failed dating attempts. Being with him was something I really enjoyed, but I was also very skeptical. Afraid to get hurt once more due to stupid cluster headache.

Once I knew him better, I told him about my cluster headache. Then I let him witness an attack. I explained in detail the restrictions it put on my life and that the future was uncertain for me in regard to work and being able to provide. I also informed him that I was thinking about moving to Brazil to be closer to the equator to relief my cluster headache.

The first few months I engaged in our relationship with the hand brake on. In the back of my head I was always aware that it could become too much for him and that he might leave. Actually I thought that more plausible than him sticking with me. I took this approach hoping it would minimize the emotional damage I would sustain if he decided to leave me.

​Not going anywhere

Lucky for me, my husband did not see my clusters, he saw me. He decided he would stay, and we started to build a life together. Arthur, like me, is more introverted, and he understands my need for rest and quiet. Of course, we still had our moments when he would be bummed out when I couldn’t attend an event. But he never gave me the feeling that it was my fault or that I was the reason he was bummed out.

His learning curve

He did have a big learning curve to make. Finding a way as a partner must be difficult indeed. At first, it seemed to go quite well. But with time cracks started to appear. My cluster headache cycles would cripple me, and I couldn’t work or even do things around the house. And if I did manage to work, I was too exhausted to doe anything else. This meant that he needed to do everything, whilst working a 40-hour work week. This became too much.

Burnout at work

Arthur took too much on and almost got a burnout. He needed to take a step back and get some rest. Because things are well organized here in the Netherlands, he could stay home sick with pay. I wanted to help him get better, but my own situation only let me do so much. Lucky for me Arthur is a very strong person, and he managed to get him self back on track. Some people would have packed their bags and left, but not Arthur. He stayed.

Protect yourselves

We decided that this should and could not happen again. What we needed was to build in safety’s in to our lives and how we handled the cluster headache periods. We did some practical things to make life in those periods easier. We let groceries be delivered. The cleaning of the house was reduced from daily, to a few times a week. We would order in more food. As I would always get attacks at night we agreed that I would go and sleep in the guest bedroom. That way I would be less likely to wake him when I got an attack.

The biggest thing Arthur changed was his view on and approach to his work. He is a very intelligent man and has always held very good jobs. But those jobs also ask a lot from a person. Dedication, commitment, working over hours etc… I told earlier that Arthur gave me the most beautiful gift by taking away my sadness and sorrow. Another beautiful gift was his new approach to his work. There and then he decided that I was more important than his job. That he would continue his work there, but that he would never let it take him near a burn-out again. He chose me over his career.

My learning curve

Besides Arthur, I too, had a learning curve to make. I needed to set clear boundaries with my husband. What I mean by that, is that I needed to learn and dare say no. I needed to learn to say no to him about situations, events and all kinds of things. Not something I enjoy because I love spending time with him. But necessary in order to deal with the cluster headache. This also go’s for social events and keeping a social life. You can read more on that here

Me and Arthur

Closing on Arthur all I can say is that I have tremendous respect for him for sticking with me in the darkest years of my life. Because of him I have found strength I did not know I had. He turned out to be the love of my life, and we have been together for more than 10 years now!

My advice for relationships and cluster headache

So if you are in a relationship, or you are in the market for one, please understand that for our partners this too is a massive challenge. And that no one can say up front if they will have the heart and the character to be able to with stand the cluster headache with you. Be kind to your loved ones and surroundings and try and keep in mind the toll it has on them.

And if you are in the market looking for one, then I would advise you to be open and honest about the cluster headache. Let them witness a full attack. Inform them up front on the restrictions it has on your life, and on theirs when they chose to be with you. Take in account that they might not be able to stay with you, and try and not blame them for it.

I would love to hear from partners of ClusterVikings on how they are dealing with cluster headache and life with a ClusterViking. All the more knowledge is shared in our community the better. Maybe Arthur is willing to talk about his take on life with a ClusterViking too. I’ll ask him and get back to you on that.

In the next post I will go into keeping a social life with cluster headache.

Remember friends, you ALWAYS win!