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I have been there too. I had to bring in my husband to get the Neuro to believe me. Never mind my diagnosis, like yours, had been made by my primary doctor and O2 worked!! It is frustrating and infuriating. Like they think we can't have them as they are so bad a little ole girl certainly would not be able to handle them at all, ya know? Only men can, so only men get them!!!! I agree Fun Times!! That would be fun to do.

Just for shits and giggles it would be great to find a man to go in and see this doc with all the same symptoms exactly as you described and see what that outcome would be. Compare notes and present them to this doc. Not that that would be possible and I am sure someone would have an explanation for the different between the male and female treatments, it would just be nice to shove it up this guys arse.

Bless you, O'N', for somehow keeping a sense of humor about this, and for the good care you have taken of yourself. At the same time, this guy should be reported to someone. He's a disgrace. It's one thing to be ignorant about CH (as so many are), it's another thing to have your head this far up your butt that you can't see daylight. In the great journal article posted here recently (https://www.bmj.com/content/376/bmj-2020-059577), this appears on the first page. Maybe you should send it to him. Or someone. Sex ratios and cluster headache The true sex ratio is unclear, as the sex ratio decreased each decade from the 1960s to the 1990s at a single site, and the male to female ratio was 4.3:1 in a 2008 meta-analysis but 1.3-2.6 in large studies in the 2010s. Previous misdiagnoses in women are one possible reason for the decreasing sex ratio.

@BoscoPikoInteresting and I am too old to keep up with the cool kid's music. Interesting though. Enough to comment.

If you have clusters and have had fatal illness ruled out you will find 99.9% of neurologists to be unhelpful (being nice). You need a primary doc who knows how to read and listen so you can get the appropriate treatments. Appropriate is a reach as there are few good ones but at least lab levels, O2, triptans and steroids as needed. Other than that you can identify the best we know about here.

You could always order a home test kit to check your D levels. The calcium and other levels would need to be done by blood panel. But if you are just curious about where your at with the D level you can sign up to be part of the study (you have to sign up before you can order the kit). Here is the link. https://daction.grassrootshealth.net/tests/?_ga=2.133335374.1521229925.1648752367-772735290.1648752367

Verapamil.. I currently take 360mg a day, 120 3 times a day, I have taken up to 1020 a day. The more I took the more side effects I had. When I was up around the 1020 it was the extended release. Now I take the standard (quick) release and can get good results with a lower dose. I am chronic so I take it all year round and I do play with my dose even though it is bad for you like Shaun said. You should have your doctor monitor you with ekg when making any changes to your does. I have read about some of our ECH friends here only taking it when in cycle and others all year round. I have also heard that it has stopped working after then stop and restart taking it again. That is the nature of the beast, what works today may not work tomorrow. I do not know how much harm the 5hr drinks can do, I have drank upwards of 8 to 10 a day at times when things got bad. The verapamil will also take some time to get into your system before you start to see any results. A lot of times you will get a prednisone dose pack to hold you over for about a week for the verapamil to kick in. Alos not the best for you to use prednisone to often but we do what we gotta do.. Other things to read up on that will help you are the vitamin D3, just vitamins that you should also monitor with occasional blood work to check your levels OXYGEN!! No harm to your body at all and works as the best abortive. Good clean fun!

It means Medicare does not disapprove coverage. It also means O2 is an acceptable option to treat clusters from an agency standpoint. Secondary insurers and primary insurers generally follow medicare guidelines but are not obliged to. Remember all of these insurance companies act like little franchises under one big umbrella. Depending on the employer they are representing, risk group insured are in and state regulations coverage can vary even within what seems like the same organization. It is confusing and totally sucks they can do this. If you are getting pushback you need to keep appealing to the benefits manager at your HR department or case worker until satisfaction is obtained. At this point, based on the medicare ruling, the insurance company is choosing not to cover. Have them do a cost analysis of oxygen verses CGRP drugs or triptans..The way is paved but the fight persists.

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

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.