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New neurologist appointment! Excited to share


kat_92
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Good afternoon all! 
I just had my first appointment with my new neurologist and it went super well. He was on board with my oxygen. I told him about my upcoming flight, and he prescribed Xanax for the anxiety, and gave me a sumatriptan injection (3 mg sample). He also prescribed zomig nasal spray, and something called ergotamine? I can’t find anything on this and clusters. Does anyone have any information on this? He also prescribed a steroid pack in case I get hit while I’m on vacation. Does anyone know of zomig and ergotamine and it’s interfering with busting? 
 

also, he asked me about mushrooms and was on board with this method of prevention. 

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This sounds like a great pre-vacation set up!   Zomig is still in the class of triptans so I believe it may interfere. Not sure about the ergotamine but found this blurb about it online. (Ergotamine is in a class of medications called ergot alkaloids. It works together with caffeine by preventing blood vessels in the head from expanding and causing headaches.) 

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8 hours ago, kat_92 said:

something called ergotamine

Ergotamine is an old one, and one that would seem like it oughta work since as @BoscoPiko noted, it is derived from "the principal alkaloid produced by the ergot fungus", same as LSD.

My personal findings with having tried it many times back in the pre-triptans paleolithic cluster era: It is completely ineffective for cluster aborts, but the inhaler form was terrifically effective for inducing vomiting.

I believe others had similar results, hence it having fallen far by the wayside as a medication another CH'er would recommend. Maybe there is some different version of it now? One version was 'cafergot' (pills), also a real dud back then.

8 hours ago, kat_92 said:

Does anyone know of zomig and ergotamine and it’s interfering with busting?

Yes on Zomig being considered a busting blocker/triptan ( @BoscoPiko for the win again) and I believe the same for ergotamine being a blocker.

8 hours ago, kat_92 said:

also, he asked me about mushrooms and was on board with this method of prevention. 

Super cool, and becoming practically commonplace now!

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40 minutes ago, kat_92 said:

The ergotamine might be my only option since insurance isn’t covering the nasal spray. $1,300 out of pocket I told them where to shove it 

...too bad...like Jeebs said...an old one with limited success. gets tried when "nothing else works". some success with infusions that they do in a hospital setting for intractable and constant hits. overuse has such nasty side effects that it has fallen WAY out of favor. your neuro seems so enlightened that this is surprising...

Edited by jon019
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3 hours ago, kat_92 said:

insurance isn’t covering the nasal spray. $1,300 out of pocket I told them where to shove it 

This is just rubbish and so frustrating! So sorry you are dealing with this. I have your old meds that you accidentally left behind during your previous visit. I can get them back to you if you would like?

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20 hours ago, kat_92 said:

I just had my first appointment with my new neurologist and it went super well.

I went to my first neurologist appointment yesterday and he had no interest in finding a cause or a solution for me. Quote: put Maxalt under your tongue when you're having an attack and then inject 3 times with Emgality and you should be fine until you have another attack about the same time next year. :angry:

He had no interest in previous trauma that I had on my left side about a decade ago or even current symptoms that I am dealing with that may or may not be related. I guess I am on my own and I am glad Cluster Buster is here to help me.

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CHB, that indeed does not sound like a top-flight neurologist.  Was oxygen discussed?  You might want to look at this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/   And of course an MRI should be done, to rule out other situations.

As for causes, I have to say there's not a lot of discussion of that here, either, though many theories get brought up.  Many people with CH remember having had head trauma, but many don't. Most people with CH smoke, but many don't.  Stress?  Psychological trauma?  Weather?  Cellphones?  All discussed.  But no one's gonna know a cause, and knowing it doesn't help much with treatment (some people find they benefit from keeping cellphones away from their cluster side).  

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No MRI just an ultrasound of the arteries on my neck. I had several cat scans done prior, but he had no interest in them either. His attitude was how are you feeling and here take these as prescribed. The only thing he said about oxygen is it's hard to get a prescription approved for that.

He's the nearest neurologist to me and I had to drive almost 3 hours to his office.

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Ugh. That makes me so angry. What he means is, it’s hard to get insurance to PAY for it. He can easily write a script, and you can be a self pay patient. That’s what I am. I pay $78 per tank as I need. That includes delivery and set up. I’m so sick of these doctors 

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12 minutes ago, kat_92 said:

Ugh. That makes me so angry. What he means is, it’s hard to get insurance to PAY for it. He can easily write a script, and you can be a self pay patient. That’s what I am. I pay $78 per tank as I need. That includes delivery and set up. I’m so sick of these doctors 

After you get the script where to you go to get the oxygen? Can it be gotten from a pharmacy like Walmart?

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...look up OXYGEN and/or Durable Medical Equipment for your area. Lincare and Apria are several of the major players....some pharmacies carry O2 but the options are limited and prices higher. don't let anyone talk you into a concentrator...not pure O2 and not enough flow for most...

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