My name is Ozayr and I live in Cape Town, South Africa.  I am a chronic cluster head since 2012 and been battling the beast for just over 13 years. This is my story…

At age 20 I awoke at around 4am with the worst pain ever. I took some painkillers (in vain) and eventually got back to sleep. When I awoke it was as the pain never happened. I moved to London in 2000 and the following year at age 26 I started waking to this curse of a headache. The headaches occurred throughout the day without warning. I would eat and get a headache. I would shower, exercise, play football and practise kungfu and get a headache. I would be at work and have to get my head under a desk in fear of being noticed. I was fortunate enough to have a considerate boss that would send me home but advise these things can’t continue like this. There were days I would bury my head in snow and place my head on the icy pavements for relief. I have banged my head through the wall (literally, as they dry walls). I have thrown friends, people and anyone else that was in my way, out of my way. I changed my diet. I stopped clubbing/partying, smoking cigarettes and smoking weed. Stopped pills, acid, cocaine, speed (and all other recreational pleasures) and these freaking headaches wouldn’t let me be. I used to storm into Emergency section of hospitals and they would tell me I am crazy to experience such pains. MRIs and xrays turned out negative. At this stage I was on zomig and one day in less than 3 hours I had swallowed 9 tablets with no relief. I was told to seek alternate therapy. I questioned and was given the answer of Chinese medicine, acupuncture. Well I tried it and besides the foul smelling herbs I was given to boil and drink the pain just got worse. I took some time off work so I could get over the headaches or whatever they are. During this time a friend wanted mushrooms and having green fingers I said I would attempt to grow. So, I grew shrooms and about 2 weeks when they were ripe for picking I was told to sample and see if they work.  Well I did more than sample because as time passed after the 1st few I realized my headache is gone, as in GONE! I continued to munch on them and smoked a joint – NO Headache. For the next few years in London I got back to my normal self, working, clubbing, partying, eating mushrooms and acid (amongst others) weekly. (Note I had no clue of clusters and the benefits of LSD. Mushrooms etc.) I was just a weekender and I quickly forgot about the pain I struggled with prior.

I returned to Cape Town, South Africa in May 2005. In July 2005 the bitch of a headache started again. I thought (believed) my headaches were over and only happened in UK due to cold climates. I visited the Dr and by the time I got to him the pain had subsided/passed. He advised I come to him immediately upon the start of the next headache, which I did. He advised it was migraine. From that day on I treated my “migraine” with Migril (ergotamine and caffeine). He found it strange the frequency and severity of the attacks. Migril works and within 20mins the pain subsides if not disappears. Problem is I was taking 4 to 7 tablets a day. I also would take 1 before I slept at night and 1 immediately upon waking in the morning. These attacks would go on for 3-6 months and at most I would get a 1 year break. In 2008 I moved to Durban thinking the headaches would no longer exist. Durban is hot and humid most of the year round. I started experiencing the most intense headaches while living there. After each attack I would literally pass out for about 40 minutes (at most). I would think nothing of it.

In 2010 I got married and all was good. I was headache free until late 2011 when the faeces hit the fan. My wife would see me collapse in pain, screaming and howling before having seizure like and fit like behaviour. I would go to Emergency section of the hospital and they would pump me with morphine. They couldn’t understand how after 2 doses I could still get another “pain” attack. My GP (at the time and an idiot) would sit with me and his journal trying to diagnose. He got it right and for the 1st time I heard the term cluster headache. The idiot knew I was on Ergotamine and then prescribed Verapamil along with Tripeline (25mg). He also added some blood pressure tablets to the mix and it was this cocktail that gave me my 1st heart attack. A week later I had another. I was also given Maxalt and asked again to try Verapamil. I lost most my hair (including body hair) due to lack of ciculation. What hair was left went grey. They messed up my vascular system. I aged like no other. My toe nails fell off and my feet were blue grey. Prior to this I was relatively fit. I mountain biked, climbed and could run up some of our mountain peaks. I then got referred to my 1st neurologist. He is a bigger idiot than the Dr. He did an occipital nerve block procedure when I asked him not to. He prescribed valiums and made my wife believe she caused my headaches. He believes clusters are self-induced and is a psychiatric condition, threatening to put me under anaesthetic as the only way to relieve. The long and the short is I managed to break free from the medical malpractice harness I was being wrapped in. In March 2012 the headaches stopped only to start again September the same year with no break since. I am chronic!

I have returned to a Dr I was with many years prior to these manic days. He has been considerate and supportive. He worked with me, gave me what I asked for. Valiums worked but I was eating them like candy. Since the heart attacks I couldn’t take Ergotamines. After some time my GP referred me to a neurologist. I am now on Lithium. I take between 1600mg to 1900mg daily. It has helped and speeded up my recovery from the previous medical mishaps. My hair is starting to grow again and the color is returning. My nails look like nails again (almost) instead of nut shells/casings. Lithium does work and does stop an attack… well not quite! The headache comes on and just before the pain comes in I start feeling like my face is being electrified. I get the shakes; tongue is thick, mouth dry. During this time I rage and will kill anything in my way. This lasts about 30-40minutes. I then feel a cold sweat and flush like feeling. This happens up to 4 times a day. A good day is once!

In the last year I started eating shrooms and they didn’t work. I ate LSD and this too did not work. I started on LSA (morning glory). This works and I get relief for a maximum of 8 days. I have tried salvia and there’s days it works too. I have followed the guides on cluster busters but unfortunately have no relief. I am lucky I have experimented with psychoactive plants in the past. It made it easier for me but at age 39 its hectic tripping out every week as much as you can to 12-17 hours (morning glory). Oh I laugh but I have a family.

I have had to quit work through this time. I recently started work again but had to relieve myself. I await a medical note from my neurologist to list/state my condition and I should be good to continue and act normal. I have alienated myself from friends and family. I have chased folks away from my home. Those close to me that wanted to assist and help really have no clue. They say they care and invade! My dear wife has stuck with me throughout. When my head goes crazy she quietly disappears. Having said that she encourages me to find a solution. She recently introduced me to a childhood friend of hers who is a Dr. This Dr is a cluster head and so is her dad. Meeting her was overwhelming, disturbing, emotional and trembling.  It is this meet that has pushed me to putting my story out there so others may know and get comfort that there are plenty of us around. We are not strange, off the wall and/or weird! (Ok we are  ) I also has a beautiful baby daughter of 7 months who dotes after me. I want to be better for her!

It is coming winter in South Africa. At present I walk around in short sleeves as heat is a curse. I cant have a hot shower nor wash dishes. Food I am fine with and eat anything. Overpowering scents, smells etc. do my head in. My taste buds are shot and all I favour is chilli. There are days I snow food with salt and there are days the food is salty (when no salt has been added). At times I have supersonic hearing. There are days I have no emotion and feeling for life! I cant exercise and risk enjoying our beautiful outdoors. I pray for the day I am cluster free and will never wish this upon anyone good and bad!

Hi Bob

Spot on and thank you! My GP has 4 patients in total. My Neuro 11. Both are academic. My neuro is 1 of the best if not the best in our country. He has practised in the US and UK at headache clinics. It is confirmed through tests that I am a cluster head. I lived in isolation with my disease as I hate complaining. Quite fitting I am a cynic and always have been. I used to look at the skies and scream "is this all you got? Give me more pain!" My saviour has been the great man above and my thinking. I studied and think ontologically. I am very aware of my behaviour and were it not for my understanding I would of ripped loose a long time ago and probably ended this curse of disease by taking my life. I know why it is called suicide headaches. This site and CB has helped tremendously. My GP welcomes my findings and my neuro clarifies a lot. Logic says for me to look into fixing the serotonin, adrenalin and central nervous system. All these are exhausted and shot after attack. I am also looking at the root problem... liver and the release of histamine. There is a way! Has to be!