Hello. I am very new to all of this, so please bare with me! I am female and nearly 25 years old.

I was released from the hospital today and have been told I have developed Cluster headaches. The Neurologist gave me the OUCH website to look at, and I found this website from there - it is nice to see that there is a community with such a wealth of information.

My story so far - I have normally suffered from migraines about 1 to 2 every month. I could just about tolerate them without too much of a trouble (I found the aura to be the worst and that did not last too long) 4 weeks ago, I had a very nasty spout of flu (maybe Swine Flu) and was in bed for a week, with a bad tension headache/migraines and other symptoms. As the symptoms of flu went away, the headaches remained (I also had very painful ears and ringing with the headaches)

What was so different on the second week however, was when I was woken up in the night. My eyes were running, nose was stuffy and I have the most vile pain inside of my left eye and down the bridge of my nose, like someone was stabbing me violently. I got up and paced around the house as the excruciating stabbing pains continued. It didn’t last very long and then went. When I went to sleep the next night, nothing happened so I assumed it was a bad migraine (I knew it wasn’t anything like a migraine as it felt so very different). However I got it again the following night and it seemed worse and then every other night it returned for a week (as well as migraines inbetween and a constant sore tension headache). One attack left my eye so red/swollen it looked bruised after and looked like someone had punched me.

After the 4th week my partner insisted I went to hospital and I was terrified I had something wrong with my brain. The constant headache and migraines didn't scare me, it was going to sleep. I couldn't do anything with the pain but pace around mumbling loudly to myself - I felt very lost. I had been seeing my doctor, who was trying to be helpful but he just didn’t know what to do (any tablets he gave me were next to useless and I could only take them when I had an attack rather than prevention before sleep)

I went to A&E Monday and was admitted to the Neurological ward. I had loads of tests done, including CT and eye tests (my pupils change size quite a lot and sometimes both are different). I experienced one of these bad attacks in the night - I rocked on my hospital bed as the pain hit me again - two nurses didn't know what to do, they offered me codiene but what was the point, the pain would be gone before they had chance to do anything. I saw a Neurologist the next morning and we went through everything - he thinks as I had a bad case of flu and was very ill, I have developed Cluster Headaches and as the clusters are now less frequent (every 4 days now) he thinks I am coming off an episode. I have been given a medication to squirt up my nose to assist and will be going in on Monday for another drug which requires me to inject myself. I will also be discussing Oxygen at my first outpatient appointment which has been made for me by the Neurologist. I will also be doing a headache diary to try and see if there are triggers (apart from getting flu!)

I took the quiz and answered no to most of the first 8 and yes to all but the droppy eye (I have watery eyes instead)

Many thanks for your patience in reading my long post and I hope it makes sense!

Thanks for your reply Callico.

I will certainly look into buying the oxygen mask that you suggested, I have had a read around the board and have seen that the mask itself makes a huge difference.

My Neurologist seemed to know quite a lot about Clusters, which seems to be lucky from what I have now read and I can see working with him to be easier than my GP who no doubt will palm it off (I have a few allergies that make my tongue and throat swell, and he never seemed bothered about giving me an epi pen to carry around just in case - so I insisted as the hospital wanted me to have one.) The Neurologist also strongly suggested I tell my work, family and GP about the OUCH website so they can all understand what it is.

I do indeed have some questions and in the future I do like the idea of helping others so I will try and get as clued up as I can over a period of time.

I wonder really what 'shadows' are. I do have a permenant tension type headache all day and sometimes it feels worse around my left eye/bridge of my nose and my pupil gets smaller or bigger, but the pain is throbbing rather than a stabbing typ pain.

Sometimes when I have an attack in the night my temp is high for some hours afterwards, even in the morning. The hospital took my blankets off of me because it was high, despite that fact I felt so cold. Do you think this be connected enough to put in a headache diary or do you think this is just me rather than the cluster?

I have had up to KIP7, is this something that remains constant with each cycle or does this really range differently with each new cycle?

Thanks again

Thanks for you reply again - I am thankful to you for answering my questions.

I am writing everything down in a diary so I think until I have a decent amount of information to look at, I don't think I can say 'that is a shadow' if that makes sense? I don't want to lable something if it could be something else - I do have a few allergies, but I eat a very varied diet so I am not sure if I should have a constant headache as in the past they have come and gone depending on what I have eaten.

I do not lie down at all when I have had a CH at night, I can't bare it!  The only time I was not pacing around was in hospital but I was sat cross legged in the middle of the bed rocking and flexing my fingers. I didn't explain myself very well in my last post - sorry about that! I had a high temp the morning after a CH whilst in hospital and the nurses took my blankets off of me then.

The KP scale is a good idea too as when I was in hospital all I could describe a CH was off the scale of the 1-10 smiley face chart that hospitals have (I had already described bad migraine pain as 7, how could a CH just be 10? ) I think the doctor I am working with knows of OUCH well so I am sure he will appreciate the KP scale when I use this in a diary. I am thankful that I have not had higher than KP7 this cycle, but now realise that next time it could be very different.

Thank you very much for the letter from the OUCH website too - that is fantastic and I will certainly use it! A friend took me to my doctors appointment as I was having a migraine and couldn't see and as we were waiting she said 'oh dear now I have a headache' and she has not even had a migraine before and I thought to myself 'HA if only you knew!!' (not that I would wish any pain on anyone of course, but with this letter hopefully people can be a bit more sensitive)

Are you a teacher? How do you find your work collegues react to CH?