What condition(s) do you live with?
Brain Cyst- I have an Arachnoid cyst at my right temporal lobe. It has been ignored for the most part because the standard response has been “they usually don’t cause problems”. At my last neurology appointment, I was booked in for an MRI and referred to a neurosurgeon because of some new symptoms.
Epilepsy – I have nocturnal epilepsy. I also have absence seizures during the daytime, but the night time events are worse. It mostly comes out at night, mostly…
Cluster Headaches (AKA Suicide Headaches) – These are a primary headache disorder and a type of Trigeminal autonomic cephalgia (TAC), the trigeminal nerve is the same nerve that conducts the signals to the brain when you have a brain freeze after eating or drinking something cold.
I mention this because it’s one of the best analogies I can think of for the pain. So, remember your last brain freeze. Now think of what that pain was like. Do you have the memory of the pain? That stabbing behind the eye and the pain at one side of your head. Multiply it by 20 and you are close to what a Cluster Headache is like. I’m literally not bothered when I get a brain freeze/ice cream headache anymore, it’s insignificant compared to a Cluster attack. Some people have bouts of attacks over a period of weeks or months, daily, multiple times a day. These are defined as being episodic. Other people are chronic, this means they don’t get a break any longer than two weeks between bouts. As you can see this isn’t a minor inconvenience like a hangover, it’s a life-changing condition that can have tragic consequences. A cluster attack can last anything from approximately 20 minutes to hours.
When I call them Suicide Headaches it’s not hyperbole. The nickname Suicide Headaches is one that has been earned. People have died by suicide because of this disease. They are incredibly painful, here on my website I compare the pain to an event I really don’t want to repeat again.
Paranoia & Visual & Auditory Hallucinations – I developed these approximately at the same time as the cluster headaches, the absence seizures and most of what I’m still dealing with today. I’m lucky in that my hallucinations are brief and while at times they have been bloody scary each one hasn’t lasted long. Even now I find them very distracting and I have a specific type that, well to be frank, terrifies me. The paranoia is an insidious bastard. It gets under your skin and twists the world. It nearly destroyed my life. When I think back to what I was like at my worst, well I’m surprised I’m still here.
Depression, Anxiety, and Borderline Personality Disorder (BPD) – It basically comes as a package deal. My Borderline Personality Disorder diagnosis is very recent, and we are still unravelling what this means. My mood is a rapid rollercoaster with highs and lows hitting me so quickly that some days I’m exhausted just trying to stay contained. The reason I called them a package deal is that I was given the depression diagnosis years ago. However, recent events have caused my psychiatrist to re-evaluate me.
My symptoms have been a nightmare. It’s such a tangled mess. I’ve bounced around different medical professionals with all of them trying to unravel their specialist area from the rest.
My Cluster Headache (CH) diagnosis alone took five years but that’s not unheard of with CH.
Parasomnia – Firstly, I want to acknowledge that night time events cause people a lot of pain and difficulty in their life. But I’ve saved this one for last for some light-hearted content. I’ve been known to prance around in my sleep, it’s probably related to my epilepsy from what I can gather. On more than one occasion my wife has been woken to see me waving my arms around, walking, and even doing a Tai Chi form. So, there I am standing, stark naked, pulling off snake creeps down, an unfortunate name considering the situation, completely asleep. It took me weeks to live that one down.
How long have you been living with it/them?
Over a decade.
How does it affect you?
With the Cluster Headaches I don’t have good days. I have bad and not so bad. There is a lot more about CH I could go into but it’s beyond the scope of one interview.
A bad day is when I’m dealing with multiple CH attacks throughout the day, my mood is low, and my coordination and speech are unsteady.
So, it’s a case of getting through one attack recovering slightly, and then dealing with the next one. In between there are what we call Shadows, which are low-level persistent pain that ebb and flows until another attack hits.
My worse day, so far, was a few months back. I had an attack wake me at about 6 am and the last one finished at 10 pm.
Once the first one had subsided the next hit at 10 am, then at 12 pm. That subsided and then from 3 pm until 10 pm I was having them for an hour with about a 20-minute break in between attacks. Not a good day.
A not so bad day is a day with lots of Shadows that don’t result in multiple attacks, but I can still get one or two full attacks. However, these tend to be shorter.
I frequently have trouble with my speech, nothing too bad, sometimes I can’t find the right word. We live with it and I go with the flow because the more frustrated I get the worse it can be.
My life has been completely changed by all of this. I don’t go out and while I maintain contact with friends via the internet that’s it.
I did manage some volunteer work with Samaritans at one point. That was because I had the flexibility in choosing my hours and Samaritans were incredibly understanding. But on more than one occasion I got hit with an attack and had to get someone to cover for me.
As for BPD well, my mood switches at a moment’s notice I get highs, but they don’t last very long at all. Long enough for me to have lots of awesome plans then I hit bottom and wonder why I was so bothered by it all.
Emotions are magnified. Right now, I can be objective about how I feel but when I’m having a bad day I don’t recognise that my reaction to an event is disproportionate.
On a bad day I don’t respond well to other people’s emotions, especially anger. My own anger goes inward, and I rage inside. It’s hard to put into words in some ways. It’s a lightning storm building up, a volcano building pressure. Other people’s emotions can hit me hard.
What kinds of methods or treatments do you use to cope? What is most effective? What is least effective?
For CH I’m on oxygen as an abortive, believe it or not it’s fantastic. It doesn’t always work but I do get some relief. I also take medication as a preventative and I use Sumatriptan injections at the onset of an attack, again sometimes it works and sometimes it doesn’t.
OTC painkillers do nothing for CH, all they did was give me medication overuse headaches. I was basically swallowing the damn things like Smarties for five years.
I don’t want to go off on a religious tangent but for my BPD and other mood-related difficulties I have found Buddhist meditation and philosophy very helpful. I’m lucky because my teacher is a Buddhist priest and I am actively involved with the sangha (community).
I’m due to be assessed for therapy for my BPD but I think Buddhism has given me many tools that have helped.
If there was one thing you could say to someone going through the same condition(s) as you, what would it be?
Talk. Please talk. Whether it’s to a family member, a friend, or even a support line like Samaritans 116 123, talk about what you are going through. You will discover that you have immense strength within you but even the strongest of us need to off-load at times.
What would your advice be to people trying to support people with your condition(s)?
Learn as much as you can about the problem. Be it a rare neurological disease like Cluster Headaches or mental ill health. How much you know will dictate how well you can advocate for your loved one.
Listen to the person you are supporting.
We think that we can listen but when we are supporting someone we ought to ensure that the time we give them is well spent. It can be tempting to react based on fear and dismiss their concerns but when we listen fully we ensure that the time is about them and not our fears. I talk about this in my Mindful Listening series.
Make sure you take some time for self-care.
Even if it is only a short walk, a relaxing bath, or a funny film. Supporting someone can be draining, it’s emotionally stressful when we offer ourselves as a sounding board or when we fight for another’s rights. Doing all of that for a loved intensifies the stress.
You are important too, remember that.
What was it like working for Samaritans, helping people with mental health struggles? Were there challenges?
Even though I don’t volunteer now I still consider confidentiality sacred. So, I won’t discuss any specific calls.
If I were to sum my experience up it would be this. It changed my life and myself for the better. It made me a stronger and more compassionate person.
Challenges? Yes. You can’t offer that kind of support without it being challenging but the call is the callers time. I was there for them.
If I had anything that I found very personal or emotionally difficult I knew I had a fantastic support network within the organisation. They really are remarkably caring and supportive of their volunteers.
The training is first rate too. At the time you don’t realise just how good the training is, but it prepares you in so many ways.
Why not subscribe?
Subscribe today to receive a free chapter from my eBook “Pills and Blades”, a subscriber-exclusive podcast episode and more!