OddNoodle

! i am so annoyed on your behalf!!! I have a similar story although blessed enough that my family doctor prescribed me unlimited oxygen BEFORE I saw a neurologist that then decided women can’t have CH and told me he would never prescribe O2 for it. It so messed up that we have to fight this hard. He wouldn’t even listen when I say oxygen aborts my attacks, he implied I was making it up & it was migraines related to my menstrual cycle. keep us updated!!! Hope you find a better doc soon that actually listens!!

For all his flaws, at least when I’ll go back to my primary doctor repeating my experience with the neuro, I believe he will roll his eyes, call him an idiot and write me a referral for my friend’s neurologist. Fingers crossed anyways!! All I want is to be followed during my D3 regimen but for that, my primary doctor agrees that its hocus pocus, so he unfortunately isn’t any help in that regard. Can’t win em all.

I mean truly!!! I was just so baffled when I said oxygen works for me, his reply was that is doesn’t usually work for migraines but that still didn’t light his bulb Funnily enough he told me he follows about 4-5 guys with Clusters so you’d think he would recognize it, geez.

It was mostly just to vent about this useless appointment. I will be going to another neurologist, one of my good friend has a trusted one in the city we live in - I will be asking my primary care doctor for a referral to him next.

Hello hello! I’ve posted a couple of times before and was always blown away by the love & support of this place! I’ve been suffering from Cluster Headaches since 2016 and diagnosed by two different General Practionners including my primary care doctor, and was put on the list to meet with a neurologist in 2018. I never got a call back, but my doctor prescribed me oxygen in 2021, made the demand again for a neurologist to see me and finally, monday I saw one, and I just wanted to share the hilarity that was this nonsense, if anyone was looking for a funny anecdote to read. First, as soon as he walked in, after shaking my hand, he insisted that women don’t really have cluster headaches so I probably have migraines. Just. I’m F30. Right off the bat. No talking to me nothing. And that just set the tone for the whole appointment. First he tells me I most likely have noticed my headaches starting after eating one of the classic migraine triggers “dark chocolate, citrus, aged cheese”. I said no, that it was about 80% of my diet without incident. Unphased, he whips out his book with cluster headaches VS migraines symptoms, I fit all but of the cluster, none of the migraine, but he insist again I probably have migraines, saying another of my trigger must be twisting my neck in a certain way. When I say no, he starts pressed the back of my neck saying, but when you bend over and do something doesn’t it start right around here? Again, no that’s not one of my triggers. Unless I have shadows, then I do avoid being upside down with a passion of course. He follows with “anyways, migraines are hereditary, you probably have some in your family!” I say no, none. He insists “not even an uncle?” It was just such a bizarre waltz where I was like, when I am in pain X happens and him being “yeah it fits the cluster profiles but they are probably migraines cause women don’t get clusters”. I asked if oxygen break migraines cause I helps my clusters and he said “no, not really. They are really interesting migraines your migraines.” He also noted that I probably don’t have clusters cause I haven’t filmed myself while in pain (?) saying most people do cause its SO INTENSE. And I am like. Yes. I know its intense, I have them. He said no, but you probably lie down in the dark and quiet during an episode. I said no I preferred pacing around (and refraining from punching myself in the face). And he explained that clusters were called suicide headaches, so I probably don’t have them cause thats how painful they are. I said I always considered offing myself when the pain is 10/10, which, thankfully, I have at most once or twice a year, otherwise I hover between 5-8/10. He was not convinced. I also asked to be followed during my D3 regimen because its something that has helped in the past, but I feel I should be seen during it because I am prone to dizzy spells. He scoffed that it was unsafe and Vitamin D is “just a trend” and he couldn’t prescribe me something dangerous just because I read it on the internet. His prescription for me? Zomeg and Indocid. ANYWAYS, all of this to share the good news to all other born female humans on the sub : you don’t have clusters!! Women don’t have that!! Stop being silly and take advils. Haha, wishing a happy day to us all! much love, oddnoodle