Lilly

Dear All, I hope you are well and are having a good (hopefully pain free) day. New to the forum, and also to the cluster diagnosis, I am trying to wrap my head around what is going on with me and would really appreciate if you have the patience to give me your opinion. My profile: Female, 35 years old, mother of one child, history of migraine in the family (mother and aunts) "Cluster headache" history: - September 2018: strong headaches in one side of my head (right side) and a combination of running/stuffed nose. At the time I thought it was a sinus infection but my otorhinolaryngologist dismissed this possibility. The pain lasted 1.5 months and then disappeared. No medication seem to effectively help. - September 2019: right eye swollen, right nostril blocked and headache stronger than last time. I could not stay in bed, could not think straight but sound and light were not a problem. The pain would get better from time to time but there was a permanent pressure behind my eyes. Ibuprofen did not help, aspirin 1000 mg seemed to have helped a bit but naratriptan 2.5 mg tablets (OTC in Germany) seemed to have had most effect. After sinusitis was ruled out, I visited a neurologist and he diagnosed me with a combination of migraine and cluster headache but told me himself the he was not completely sure. He prescribed rizatriptan 10 mg tablets... the tablets helped to cut the pain down to 1 hour (instead of the typical 3 hours that I was facing before) but I had a lot of difficulties to function with more than one tablet a day. This went on for 1 month, then the pain started fading away for two weeks until it disappeared . Forgot to mention, I had an MRI scan, everything normal as well. - December 2019: Exactly 1month after the previous crisis, same thing again... eye swollen, blocked nostril and massive headache. The neurologist, now more certain about the Cluster headache diagnosis, put me on sumatriptan 6mg injection. With Sumatriptan 6 mg I can cut the headache within 20 minutes but have instead chest pains and a feeling that I cannot breath and this goes for 30/45 minutes. Also, after staring on sumatriptan my right eye was no longer swollen but the nose would get blocked before every crisis. I was also very lucky to have two tanks of O2 prescribed. O2 significantly decreases the pain but does not make it go away. - Beginning January 2019: Pain starts fading away - Mid January 2019 until now: pain is back as before - eye swollen, blocked nostril and massive headache. Current approach: Sumatriptan 3 mg injections, O2 and Verapamil 240 mg 1x day. I am taking the Verapamil for two weeks now and I am not seeing improvements in the headaches... but it makes me tired all day. Facts that make me question the diagnosis: 1) I have tried to stay completely without medication to observe the pattern of the pain and it seems to me that I generally have 3x to 4x day peaks of approximately 3 hours. In between I have this strong pressure around and behind my eyes and very few moments totally pain free; 2) the pain is excruciating, but I have never felt like banging my head against a wall (yet), never fainted because of it, and could even do some tasks during crisis...however, I have seen a significant cognitive decline during crisis (difficulties to solve complex problems, to concentrate on conversations and even to form sentences); 3) The swollen eye, dripping nose is very evident at the begging of the cycle and then after some crisis it disappears, leaving behind just the stuffed nose. Questions: 1) Does anyone face a similar case of "atypical" cluster headache? 2) For the chronic patients: how can you keep your normal daily functions? Does the sumatriptan leave your head foggy? :-) I was in sick leave for a while and I am now changing my job, so I have some time off from leftover vacations and over hours...but life needs to continue once I start in my new job and I do not know how. Thank you all very much for your time and please accept my apologies for this huge message and ignorance on the topic. Kind regards, Lilly