Hi all, my name is James and I am 27 years old. I live in London,UK. Firstly it is amazing to see the amount of information on this site and I am truly grateful to those that have participated in making this an extremely helpful, informative and amazing website. I have been reading from this website for a while and when I first found it, felt a wave of emotion come over me knowing that there were/are others out there experiencing the same symptoms.You have all been a great help to me already without knowing it, so thanks. My apologies for not participating sooner. I am very bad at writing posts and keeping to these types of things.
I am an episodic sufferer of cluster headaches which started when I was 21 years old. I am now currently in my third cycle. The first lasted 10 weeks and the second 8.
At first I thought that it was my tooth that was causing the problem as the attacks didn’t last that long and the pain was around a kip 5. I went to the dentist and begged him to take out the tooth he thought might be giving me the problem. He suggested it was my upper right wisdom causing me the problems so he took it out.... The tooth wasn’t the problem.
In the coming days the bouts of pain were becoming much worse waking me up from deep sleep at 6am everyday and causing me to pace around my room.
I was sharing a room with my brother at the time and remember him going ‘it can’t be that bad..common mate’, I in turn went to his temple and pressed my knuckle very hard against it shouting that this is only part of what this feels like! He reacted very well (bless him) and just told me to calm down. I left the room and started pacing around the house like a lunatic and screaming. That was my first kip 9 attack.
I seriously thought something was majorly wrong with me and saw a number of docs who told me that I could have an aneurism, MS or could be going blind...they prescribed me pain meds which I wasn’t sure were working as the pain would always suddenly stop (which i attributed to the pain meds).
After an MRI, ECG, EEG I was diagnosed with cluster headaches by a good neurologist who was familiar with the condition. I was placed on verapamil 80mg 3 times a day. After a week of it not working, my doc stopped the meds and gave me some more imigran injections but I felt the attacks fading at this time anyway (9 weeks already) and decided to just stick with the imigran and wait. They disappeared within the week!
Fast forward 2 and half years and I am backpacking in Colombia when I get my first attack. I knew what was happening right away and went straight to the pharmacy to get some imigran injections. Unfortunately they only have it in nasal from in south america so I bought as many as they had.
I then booked an appointment to see a neurologist who was ecstatic to have a Clusterhead guinea-pig at his disposal and was quick to prescribe me a number of medications including : Amiptriptyline, Prednisone, Lidocaine drops (4%), Clonazepam, Percocet and Oxycodone for when all else failed. Oxygen was very difficult and expensive to get hold of in Colombia as one might imagine...
I really suffered greatly during that cycle, getting upto 8 attacks in a day from around weeks 5 to 7 (I won’t go into full detail). I was overdosing on imigran and painkillers (silly me) and onw would often find me doing star-jumps on the balcony every morning from 5 am till 7. The village I was in thought I was mad and when I told them that cluster headaches were the reason for these autistic looking attacks, they laughed and said its all in my mind and that i was crazy. Obviously I don’t need to go into detail of how it feels when everyone around you just thinks its a simple headache and tells you to get on with it etc etc. This is not even a headache ffs!
A friend ( a hippy artist from the beach) who was helping me through suggested I go to see a proper witch doctor in the mountains. At that point I really would’ve tried anything. He told me that she was the real deal but we would have to hike there and we would need to wait for his cousins to come with us for protection.
Few mornings later they arrived to take me to ‘the shaman’. I was met by an elderly woman with the friendliest calmest energy, guarded by a blind looking man with a scarred face. After a brief introduction she asked me if my condition was caused by cocaine/drugs. I informed her that it most certainly wasn’t and with her hand on my forehead she told me that she could stop the cycle but not cure the disease...(I hadn’t told her what was wrong at that point) I thanked her for her words and she got to work preparing.
I was stripped to my underpants and sat on a plastic stool in the middle of this small jungle hut with herbs and remedies everywhere (the stuff you go through when you are in pain is almost funny). She had a ready made concoction of herbs, rum and water in an old squeezy ketchup bottle you find in hot dog stands (love the 21st century..) and started spraying it all over me whilst chanting.
She then walked around me in circles chanting and imprinting some symbols all around my head. It was all a bit strange but I decided to go with it. 10 minutes later, it was all over and she told me it was gone... I thanked her and took out 50 dollars to give to her. She declined immediately and said she would’ve only healed me if she could and that a true healer does not do it for money. Besides I was her first foreigner and she was proud to have treated me.I thanked her for her efforts and hospitality and eventually went on my way.
I took all this treatment with a pinch of salt but all the locals swear by it so there was no reason in not trying it... Fast forward one day and no more headaches! I was pain free!! I couldnt believe it and am not sure whether I really do (as I was already in week 7...) but whatever, something worked and I could at least get some sleep and start traveling again!
2 years later and they are back!! Was awoken by the beast at 7 am...had no meds so just tried to run it off. Nothing for 5 more days and now the cycle has started again...I am currently at day 13 of my cycle and tomorrow I will try an injection to the occipital nerve which my new neuroligist advised I try. She advised this on the grounds that she believes it can terminate the cycle and has had good results with other clusterheads.
All I really wanted to use this time round were the injections of sumaptriptan and O2. The O2 is proving very difficult to get and is very expensive as not covered at that pressure under the NHS (national health service).Any advice on how to obtain the O2 in the UK would be much appreciated.
I have documented this cycle fully and would be happy to share my graph/diary. I am also looking into perhaps trying the clusterbuster method against the advice of my neurologist who says they are addictive and have abuse potential. I just feel as though I’ve tried so many meds (i’ve also contracted lots of tropical diseases on my travels..) and just don’t want to put anymore in me! A different approach seems needed...I will try to keep a positive attitude this cycle, it will not beat my mind as well as my head this time round.
Thats more or less the factual part of my story. Thanks for reading it.
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