I don't understand specialists grrrrr

[drixhen]

So I saw a new neuro this morning after being on the wiating list for over 7 months to see him. I was referred to him as he is supposed to be one of the best if not the best headache neurologist in the country.

I already have a neuro that I see and have been happy with how things are going. My partner pushed to make sure I saw the new one this morning as I'd waited so long.

I talked openly with him and explained my busting regime. He said he's never heard of pschedelics being used to treat CH and suggested that marijuana was the best alternative treatment he'd heard of.

I don't think I was expecting much and wasn't planning on changing anything but I don't understand how one of the top specialists in the country hasn't heard of busting. I mean half an hour on google on the area of your expertise seems like a reasonable expectation for a specialist.

What's worse is that I suggested he look into it and there didn't seem to be the slightest interest in finding out more.

CH just seems to be an invisible disease for everyone but those it directly affects  :'(

[spiny]

marijuana was the best alternative treatment he'd heard of

What???????? Not really. Migraines much more so than clusters.  Can make your CH hits worse, depending.  >

They don't Google. They just run with their magazines mostly. But, after a day typing in all the patient info, I sort of understand it. 

[drixhen]

For $500 for a half hour consult I think a half hour of googling  over the course of his career is the least you could expect.

Personally I had heard of busting before I even got Clusters - Net Geo doco I think so I kind of expect someone who must be earning close to a million a year for being a migrain and cluster headache specialist should at least know of the alternatives.

How can these people be educated!

[MoxieGirl]

Does pot help with migraines? May have to look into that.

Also, I think  (or maybe presume) a lot of their recommendations are inspired by big pharma's, and like mentioned, peer-reviewed papers. Doesn't mean they are at all in touch with the real world.

I strongly feel like I've exceeded the combined knowledge of my GP AND Neuro when it comes to clusters. Yes, my GP has a close friend with clusters which gives her a better understanding than most, and yes my Neuro is a migraine sufferer, so he 'get's it' better than most as well. But after following their advice and prescriptions for 5 years, I only made significant progress with the condition when I came to this site.

I now find I update my GP with new information each time I see her, which is once or twice a year. I haven't seen my neuro in 3 or 4 years. He just no longer because helpful, so why waste my time?

MG

[spiny]

About three years ago I told my neuro about the D3 regimen. He would not listen. Last fall I listed it on my meds. Lo and behold: He had just read about D in his Neurology magazine. So, that made it medicine, not hearsay and he was rather gung-ho.

I also told him about the new device covered at the conference. That he asked me to email to him.

If it is not signed, sealed, and delivered with a seal of approval or delivered via pharma rep., it may as well not exist for most of them.

Before our new health system went into effect, I got a 30 minute visit. Since, I get 15 and he has to type while talking. But don't worry, soon we will be waiting 2 years to see a specialist.

Take care of yourself because they no longer can.  :-*

[Bejeeber]

I mean half an hour on google on the area of your expertise seems like a reasonable expectation for a specialist.

Yeah that is just so way out of touch with the real world for a specialist to have never even heard of busting???!!! I think it would only take more like half a minute of googling for someone to know more about what's really going on out here than this "top neurologist".

[Pete M]

Still not sure if quitting my 35 year 1 to 2 joint a day habit was a mistake. My cluster headaches started around the same time that I gave up pot. Since that time (mid November 2013) the longest I have gone without a CH is 10 days. I wonder if my long term habit was masking my CH as the only real head pain I used to get was self inflicted hangovers.

As for incorrect diagnosis:

Had some major dental work done shortly after giving up pot. Started getting nasty headaches and told my dental

surgeon and he said "You have Trigeminal Neuralgia". Then someone else in his office said "You need a root canal".

Had the root canal and still got headaches so they sent me to my doctor to get a neurologist appointment for same diagnosis of Trigeminal Neuralgia.

The neurologist said "You have Trigeminal Autonomic Cephalagias (TAC's) here is a prescription for Lamotrigine" (a very powerful medication that can cause seizures)

Not knowing what TAC's were I went home and researched them. I discovered that there are 4 types of TAC's and that the one TAC the best explained my symptoms was CH. Further research showed that Lamotrigine was successful in treating 2 types of TAC's, but not for CH.  Rather than fill the prescription I went back to see him to tell him that my symptoms pointed to CH. The neurologist would not reconsider his original diagnosis and had the nerve to say to me "You must have a really high tolerance for pain because if you truly had CH you would have been so desperate that you would have taken the pills I prescribed you".

I went back to my family doctor to arrange an appointment to see a different neurologist and to ask him for a prescription for Oxygen. He said "You would have to prove (as required by Canadian law) that your body is O2 deficient in order to be approved and you are not, so you won't qualify. I later found out (after I left that appointment I called an oxygen supplier) that he could give me a prescription but that I would have to tell him how to write it up so I could get the correct set up. My doctor did take a look at all the research papers, regarding CH, that I brought along and wrote me a prescription for Verapamil. My research on this shows that the dose is too low (also slow release) to be effective so I decided to hold off on the Verapamil and see what busting will do for me.

My point to all of this is to confirm that even the "experts" aren't very knowledgeable when it comes to CH. I also agree with 'spiny' that we need to advocate for ourselves these days.

[drixhen]

It's crazy because I get to see a free neuro who is great and understands busting. I don't even know why she is free but I think it's to do with seeing her at a hospital. She's referenced the harvard study in her work and gets it.

I see this bloke and he cost a fortune and know half as much.

It really makes me sad how everything is run on profit. I read about the trouble bol 148 is having getting funding and just think if the western world spent less money on bombs and more on caring for people how much better we all would be.

[Bejeeber]

The neurologist would not reconsider his original diagnosis...

Ugh that deadly combo of ignorance plus arrogance seems to be way too pervasive in the medical field worldwide when it comes to CH. Thank gosh for the occasional good doctor here and there, drixhen's first doc being a prime example of the goodness.