First Neurologist Appointment (Rant/Story Time)

[OddNoodle]

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

[Shaun brearley]

So at the end of the  appointment are you diagnosed as CH or Migraine ,as you said that you had been diagnosed by 2 general practitioners plus a primary care doctor with CH ,but Neuro said migraine.  Will make a big difference on the treatment you will receive.  You really need to get an appointment at a headache clinic with a headache specialist.  You know that you have CH  but doctors and neurologist not really best people to diagnose CH . Headache specialist is the place to go 

[OddNoodle]

1 minute ago, Shaun brearley said:

So at the end of the  appointment are you diagnosed as CH or Migraine ,as you said that you had been diagnosed by 2 general practitioners plus a primary care doctor with CH ,but Neuro said migraine.  Will make a big difference on the treatment you will receive.  You really need to get an appointment at a headache clinic with a headache specialist.  You know that you have CH  but doctors and neurologist not really best people to diagnose CH . Headache specialist is the place to go 

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. 

[FunTimes]

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. 

[spiny]

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. 

[OddNoodle]

3 minutes ago, FunTimes said:

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. 

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.

[OddNoodle]

1 minute ago, spiny said:

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. 

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.

[Juss]

At least they were not purported world-renowned experts, pumping you full of massive doses of DHE, Imitrex, and other heart-damaging medications, consequently burying deep into medical records: allergic reactions, Imitrex “serious heart-damaging side effects.” Meanwhile, the hospital covers up, never discloses that you had two myocardial infarcts, aka, two massive heart attacks. Oh, and they never treated them. Oh, and that is from their purported world-renowned neurosurgeons covering a botched ACDF, which caused a severely/significantly compressed spinal cord that when my new neurosurgeon corrects, could paralyze me. 
 

It's okay, they won't like this outcome: they don't know how nasty, dirty, and/or spiteful I can be. FYI: 3 doctors dropped me, now that I have the evidence. Yeah, they are scared. 

 

 

[BoscoPiko]

6 hours ago, OddNoodle said:

All I want is to be followed during my D3 regimen

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

[Pebblesthecorgi]

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.

[Juss]

Any PCP or FNP can write for a 25 Hydroxy D draw (Vitamin D test). Under no circumstances should you need an independent lab. Despite CMS cracking down, I mean pulling licenses (want proof?) for ordering extensive blood work, if there is a good cause-which, in this case, there is you can get a draw.

Even the private sector won't bat an eye. While you are at it, have B-12, crap drawing a blank. Let me see what else, C-Reactive is another. I will have to look. The C-Reactive without the treadmill, btw. 

I will get back to you, in a little, well I am smashed, lol. Been hitting that mason jar a bit much, lol. 

Edit: someone mentioned a good Primary. I second, only a functional nurse practitioner, or even a psych nurse practitioner. My Psych NP is my neurologist and better than Hopkins, Jefferson, Georgetown, UPMC. Want me to keep going? Those neuros just drug you to oblivion or until you are dead. She treats my problems. 

[CHfather]

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.

[BoscoPiko]

16 hours ago, CHfather said:

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.

Makes perfect sense that the ratio would drop with time. I myself am a female. I suppose I got lucky in diagnosis with my neuro. I think an important factor is (can they hear me)! Are they taking a through account of my symptoms? I was diagnosed with migraine for nearly 2 years by female general practitioners Remember you are your best advocate when it comes to your health! I got so fed up with my practioner that I fired her (she tried to tell me I had 2 types of headaches) and that was the end all. I then had an attack that made me believe I was gonna die.  Dialed ER got routed to SF. Then got a smart neurologist that opened the conversation with "description of pain in your words" he instantly said oxygen and you have cluster.   I suppose I got lucky.. 

[spiny]

'Remember you are your best advocate when it comes to your health!'

Always Bosco, always!!!