Jump to content

Talking to my doc


Blitz
 Share

Recommended Posts

How do I get my doctor to stop talking about migraine treatments without being rude?  Every time he says "I heard such and such is working for migraine" i just want to strangle him.  I have said countless times that CH is not migraines.  I'm at my wits end here.

Link to comment
Share on other sites

Uff.. That's a tough one if your doc is under the impression that you only have migraine? Has he diagnosed you with CH? I suppose you could go into a very detailed version of your attacks in an effort to get him/her to see the difference but if the doc is not familiar with CH that may be a fruitless effort. You should be able to find and bring a printout of what CH is with you on your next visit (not sure how much that would help either). You may want to look for a local headache specialist as you would most likely have better luck getting the correct diagnosis (if you have not been). I do however, believe that many of the medications that are used for CH are somewhat similar to those for migraine with a few exceptions so that may be why your doc keeps talking migraine?.. Not sure if this was all that helpful but hopefully some of the more experienced will chime in here soon.

  • Like 3
Link to comment
Share on other sites

I figure if your doc is not a headache specialist, he is unlikely to have much (or any) clinical experience with CH, hence his references to what he knows - migraine.

It sounds like he is not super into researching CH so far, so I'm gonna second the suggestion of @BoscoPiko to seek out a headache specialist if at all possible. And yep, triptans and stuff are prescribed for both migraines and CH, but everyone and their clusterhead mom will tell you that one of the best things you can have prescribed by a doctor is the more CH-centric oxygen for aborting attacks.

Then a lot of people 'round here (I'm one of them) and their clusterhead dad will tell you the D3 regimen and busting can be very effective, non toxic ways to prevent CH whilst bypassing the pharmaceutical RX routine and doctors in general.

 

  • Like 4
Link to comment
Share on other sites

....need.new.doc...

...preferably a HA specialist, at worst a open minded pcp who will respond positively to your needs (knowledge of which you may have to supply). nearly every clusterhead knows far more re CH than most docs, including neuros, will ever know. most doctors now have neither the time nor desire to become a student of CH for you, its a rare condition. you are the advocate....

  • Like 5
Link to comment
Share on other sites

19 minutes ago, jon019 said:

....need.new.doc...

...preferably a HA specialist, at worst a open minded pcp who will respond positively to your needs (knowledge of which you may have to supply). nearly every clusterhead knows far more re CH than most docs, including neuros, will ever know. most doctors now have neither the time nor desire to become a student of CH for you, its a rare condition. you are the advocate....

Well said.

  • Like 3
Link to comment
Share on other sites

Is it that your doc doesn't know you have CH, or that he knows that you have CH but keeps endorsing/prescribing migraine meds?  Has he prescribed oxygen?  Has he prescribed Imitrex, or verapamil, or one of the new CGRP meds (such as Emgality, Aimovig, or others), all of which are also treatments for CH?

What are you doing beyond pharma meds?  D3 regimen?  Busting?

Most CH patients, as has been suggested, have very little need for doctors. If you can get an oxygen prescription, that's good, but you don't need it to have an O2 system.  A prescription for an injected or nasal triptan can be very good to have, but those are also migraine meds.  And I think everyone probably ought to try one of the CGRP meds (also essentially migraine meds, with boosted dosage for CH), but others disagree with me about that. Beyond those things (and maybe a course of prednisone to interrupt a cycle), the OTC D3 regimen is much better (more effective; fewer side effects) for most people than verapamil as a preventive;  the D3-related anti-inflammatory practices (including the "Full Monty") can often stop a cycle; the best abortive, oxygen, can be set up without a prescription, as I've said; and busting is great if you are open to it.

 

  • Like 4
Link to comment
Share on other sites

13 minutes ago, CHfather said:

Is it that your doc doesn't know you have CH, or that he knows that you have CH but keeps endorsing/prescribing migraine meds?  Has he prescribed oxygen?  Has he prescribed Imitrex, or verapamil, or one of the new CGRP meds (such as Emgality, Aimovig, or others), all of which are also treatments for CH?

What are you doing beyond pharma meds?  D3 regimen?  Busting?

Most CH patients, as has been suggested, have very little need for doctors. If you can get an oxygen prescription, that's good, but you don't need it to have an O2 system.  A prescription for an injected or nasal triptan can be very good to have, but those are also migraine meds.  And I think everyone probably ought to try one of the CGRP meds (also essentially migraine meds, with boosted dosage for CH), but others disagree with me about that. Beyond those things (and maybe a course of prednisone to interrupt a cycle), the OTC D3 regimen is much better (more effective; fewer side effects) for most people than verapamil as a preventive;  the D3-related anti-inflammatory practices (including the "Full Monty") can often stop a cycle; the best abortive, oxygen, can be set up without a prescription, as I've said; and busting is great if you are open to it.

 

You know I was really hoping for this rt here.. I am terrible at articulation but you @CHfather not so much. Good questions and response. I'll get better as long as I continue to educate.  Thanks for piping in to this new suffering individual.. 

  • Like 2
Link to comment
Share on other sites

Oh I've been diagnosed for 13 years.  Tried it all.  He is actually a pain specialist because I broke my neck a year ago.  I'm one of those people that oxygen doesn't work for and much of the other stuff can't be done because of other health problems that disqualify me.  He thinks he's helping, I know he does.  He just doesn't get it.  I'm ready to just ask him about prostate cancer treatments, so when he asks "Why, you don't have prostate cancer", I can respond that i don't have migraines either.  

Until I can convince them my other problems have been misdiagnosed I can't really proceed and I know that.  Pretty much my regimen is cussing and blasting music and eating zip fizz.

Link to comment
Share on other sites

I have found that having Clusters teaches us why they say Doctors are “practicing medicine”! Over the last 45+ years I have heard try this and tell me what it does far to many times. 

  • Like 3
Link to comment
Share on other sites

12 hours ago, Blitz said:

I'm ready to just ask him about prostate cancer treatments, so when he asks "Why, you don't have prostate cancer", I can respond that i don't have migraines either.  

Yes, do that!!! Perhaps it will open his ears to what you are saying. Good grief.

O2: Tell us how you were instructed to use it please. That makes all the difference in the world. What flow rate, mask type, time, etc. It ALL matters. Do you utilize caffeine for your hits? Energy drinks or coffee? 

He may be a pain specialist, but that is NOT a Neuro and he likely has no idea regarding Clusters. They are not his forte. 

Have you read about the D3 Regimen? Cheap, easy, no doc, and good for you.

  • Like 3
Link to comment
Share on other sites

16 minutes ago, xBoss said:

The crazy thing about CH is it can only be diagnosed and treated from the patients words.

...as bad as it sounds, i always shout a YEAH! when the rare clusterhead reports being hit IN the doc office. this is an illness whose effects must truly be witnessed to be believed....otherwise they think you are exaggerating/drug seeking/crazy......  as we are left to describe the indescribable to the unbelieving...

  • Like 3
  • Thanks 1
Link to comment
Share on other sites

3 hours ago, jon019 said:

drug seeking/crazy......  as we are left to describe the indescribable to the unbelieving

Oh yes @jon019ive been accused of being a drug addict on a few visits to the Emergency department in my time . Just so glad I don't have the need for the place anymore  . 

  • Like 4
Link to comment
Share on other sites

9 hours ago, Shaun brearley said:

ive been accused of being a drug addict

Crazy thing is that most of us cluster heads wouldn't touch half of what the common day doctor is willing to prescribe for pain as it does nothing for our sort of pain. 

  • Like 3
Link to comment
Share on other sites

4 hours ago, BoscoPiko said:

Crazy thing is that most of us cluster heads wouldn't touch half of what the common day doctor is willing to prescribe for pain as it does nothing for our sort of pain. 

@BoscoPikoso true I remember going to A&E  loads of times and all they wanted to give me was morphine at stupid doses just to shut me up . I'd be back in A&E 5 or 6 hours later with another attack , and again pump me full of morphine , but when I  end up in A&E 5  times in 3 days they start throwing around this drug addict theme and that I  haven't really got anything wrong with me . Oh and by the way morphine does f--- all for CH pain 

  • Like 2
Link to comment
Share on other sites

1 hour ago, Shaun brearley said:

Oh and by the way morphine does f--- all for CH pain 

...no truer words! 20 years ago, in the depths of intense CH, i had access to pure morphine. it didn't even TOUCH the pain of CH, but twice, and twice only, i took enough to knock me out because i was f'ing desperate. it was a wake up call to get this shit under control. morphine is definitely NOT the kind of drug to be self medicating with, especially under duress and w/o full mental faculties. thereafter got a number of years of good success with verapamil and oxygen, until ultimately dialing in the O2, energy drinks, D3 regimen....and a zomig ns in pocket as pacifier....

Edited by jon019
  • Like 4
Link to comment
Share on other sites

It's a baffling but stark reality that none of what has helped many of us thus far, has come from a doctor. That in itself speaks unnecessary vocalized volumes... I have always wished that I could get paired up with a doctor that had CH but due to it's rare nature I've had no luck. The best I've gotten has come from none other that the amazing folks on here.  If your brain is real mean to you,  this place is a library full of real methods and means.

  • Like 2
Link to comment
Share on other sites

i am convinced that the drugs the docs pushed (verapamil, triptans) made my bouts worse. 

big pharma has done nothing for me except make the only drug that helps me illegal. too bad lsd wasn't profitable enough for sandoz. it sucks but such is life.

about 10 years ago i decided to stop all medication preventative and abortive. i stick to O2, Red Bull, D3 and Psychs.

So far i'm managing this godforsaken disease better myself than all the highly educated neurologists i have been to.

i am not disregarding medicine and science, it's just that in this case science hasn't done shit for me. i don't expect huge changes either. 

even with bigger groups of sufferers (migraine) medicine is fishing in murky waters and throwing everything but the kitchen sink aht the patients...  

 

  • Like 4
Link to comment
Share on other sites

Funny, Jon talks about having a hit in the office to show them the pain that we endure. I would love to have one in front of my Neuro. He is kind and good, but has no idea. 

Most of our meds are actually hand-me-downs from migraine treatment. Some work, at  a different dosage, others work not at all.

We are too large of a patient population to be called an Orphan Disease and get special treatment. We don't fit in any box and we get almost NO research into what might help us. So, we ride on the coattails of Migraine. Heck, even our use of MM is migrating to the Migraine community and LSD testing is sort of being taken over by other illnesses since it is in testing now for PTSD, Clusters, and Migraine. Migraine is the one that catches the public eye.

I had to take my husband for my second Neuro visit to kill the 'migraine' mission the doc was convinced was the right path. My descriptions mattered not to him. Female = Migraine. After my husband told him he was sick of loosing his wife at 8pm every night, he perked up and listened to me. 

Yes, they want to peg Migraine and I think it is because it is easier to successfully treat than CH. Most are in over their heads sadly. 

  • Like 4
Link to comment
Share on other sites

13 hours ago, BoscoPiko said:

It's a baffling but stark reality that none of what has helped many of us thus far, has come from a doctor. That in itself speaks unnecessary vocalized volumes... I have always wished that I could get paired up with a doctor that had CH but due to it's rare nature I've had no luck. The best I've gotten has come from none other that the amazing folks on here.  If your brain is real mean to you,  this place is a library full of real methods and means.

Wonder why this posted twice? Maybe a mod can delete one?

Link to comment
Share on other sites

1 hour ago, Bejeeber said:

Deleted. I had thought maybe you just wanted to doubly emphasize your point. :lol: Seriously though, dunno why the pesky double posts happen. :mellow:

LOL. I'm not even sure how I did it? Thank you Jeeb.

  • Like 1
Link to comment
Share on other sites

On 6/21/2022 at 2:05 PM, spiny said:

Yes, do that!!! Perhaps it will open his ears to what you are saying. Good grief.

O2: Tell us how you were instructed to use it please. That makes all the difference in the world. What flow rate, mask type, time, etc. It ALL matters. Do you utilize caffeine for your hits? Energy drinks or coffee? 

He may be a pain specialist, but that is NOT a Neuro and he likely has no idea regarding Clusters. They are not his forte. 

Have you read about the D3 Regimen? Cheap, easy, no doc, and good for you.

I had a headache specialist neuro who himself was diagnosed with CH from 2015-2020 but he died from the pandemic.  It was the high flow oxygen.  I am trying to wean myself off relying on energy drinks because of my kidneys.  Yes I know its give and take.  The best thing I've found is massive B vitamin energy drinks.  I mean other than cocaine.

Link to comment
Share on other sites

17 hours ago, spiny said:

Funny, Jon talks about having a hit in the office to show them the pain that we endure. I would love to have one in front of my Neuro. He is kind and good, but has no idea. 

That has happened to me twice. Both times i had to fight the doc and the nurse to up the o2 flow to 12 because "protocol says 8l/m" is enough. i was screaming in pain and they were watching me like scared deer watching headlights. it was funny, really.

  • Haha 1
Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
 Share

×
×
  • Create New...