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hey everyone, thanks for accepting me into this group i have been misdiagnosed with migraines for years. The past 4 years i have been experiencing what i now know is episodic cluster headaches. it starts off with one attack a day and shortly escalates to 8+ attacks a day. I am on day 14 and going to the emergency department today to beg to see a neuro, get scans done and try the oxygen. I have had scans when i was 15 (25 now) and nothing was found. i have a referral to see a neuro but cant afford it/the wait times are too long for me. i have trialed numerous preventatives, currently trialling Indometacin. i strongly dislike imitrex, sumatriptans etc as they may stop an attack but make the next ones so much worse. my attacks start at 4am and i am falling asleep around 7pm with the help of cannabis/sleeping tablets. thankfully, unlike most of you im still getting around plenty of sleep. of course i am exhausted and completely useless in this state though. i have some connections and may be able to get some MM (or if anyone is in sydney, australia HMU). the only now medicated relief i get is sitting in a super hot bath with a wet cold towel thats been in the fridge wrapped around my head/neck. questions: 1. has anyone tried indometacin and found relief? 2. in regards to oxygen therapy do people here use the CPAP machines or a the emergency 100% canisters? 3. my following medications (which i basically take the max of each day) are: ibproufen, paracetmol, indometacin, panadeine forte (codeine), aspirin, b12 and magnesium vitamins. i also use oils and tiger balms. would any of these interact with MM dosing? 4. does anyone ins SYDNEY AUSTRALIA recommend a neurologist? preferably closer to the northern beaches/cbd?
I only became a member on Clusterbusters for a couple of weeks, but I cannot tell you how important it has been to be a part of this community. Today I took my son to his first appointment with a neurologist specializing in headaches. Quiet, soft spoken and required a little probing from our end but we left with hope. I was so delighted that he actually recommended Clusterbusters as a resource for help. He shared all the options we had to us, wrote a script for O2 with no hesitation, imitrex, and spoke to us about busting with seeds and mushrooms too. He also spoke with great optimism about Aimovig which just got approved in Canada. He said he’s had cluster patients on it during trial with great success! There is hope!! I have to thank CHFather, Batch, and Clusterheadsurvivor for all their support and guidance. I don’t know what I would do without this forum and their support.