PCP says my headaches can’t be CH’s

[rde050112]

I have been trying to get oxygen from my PCP my last 2-3 cluster periods. My symptoms check literally all the boxes of Cluster headaches but now he says they can’t be CH’s because Imitrex injections help abort the attacks. He claims the injections are not effective for cluster headaches and since they help me he won’t even consider giving me oxygen. 
Am I missing something here? Is this crazy?

[jon019]

....are you female...some behind the times pcp's don't think women get CH...they are frightfully and obviously wrong.

...what's your diagnosis? triptans were developed for migraine (but work for CH too)...is this his hang up?

...i am not recalling the name of standard reference that physicians use...hoping another clusterhead will come along and provide. it says the same as the below .orgs and .gov (not the frequently derided .coms)....i could have filled a page easily. EVERY ONE of them states the standard acute care for CH abort is OXYGEN and TRIPTANS (Imitrex)...

....if there is a way to present this info to your pcp...mail or email or mychart or advocate w/o being present to witness the embarrassment (and therefore reluctance to believe) i would try that. if you have an honest relationship where you can sit and talk openly face to face and present references...go for that (i'm suspecting no...but that's an assumption)....

....i saved this comment til last but i was SHOUTING it upon first reading your post..."get thee a new doc"....sheesh, this is a bizarre thing for him to say. preferably a headache specialist (or at least a pcp willing to listen, learn and provide)....and not just any neuro (who frequently know jack spit about CH)....

Pharmacotherapy for Cluster Headache - PMC (nih.gov) 

Cluster Headache Treatment Options | AMF (americanmigrainefoundation.org)

Cluster headache - Diagnosis and treatment - Mayo Clinic

Management of Cluster Hns use, hieadache (aafp.org)

Cluster Headaches: Symptoms, Causes, Treatments (clevelandclinic.org)

Edited September 1, 2022 by jon019

[snafu]

1 hour ago, rde050112 said:

he says they can’t be CH’s because Imitrex injections help abort the attacks.

what the hell....that's the first time i hear such nonsense. either you take it upon you to educate him, jon019 provided links, or you get yourself a more knowledgeable and up to speed doc.

take care!

[xBoss]

23 years later and I am still self diagnosed. These jokers have no way to tell except to listen to the patients words.

[Bejeeber]

16 hours ago, rde050112 said:

He claims the injections are not effective for cluster headaches and since they help me he won’t even consider giving me oxygen

Wow, that is one terrifically misinformed PCP - what a nightmare. 

[BoscoPiko]

I would be interested to know what this PCP believes is effective for CH????

[Bejeeber]

On 8/31/2022 at 11:17 PM, jon019 said:

i am not recalling the name of standard reference that physicians use...hoping another clusterhead will come along and provide.

Physician's Desk Reference (PDF) perhaps?  [Edit: PDR, doh]

[CHfather]

[Edit: I see that jon has just posted this same info about UpToDate .. .. ..]

 

 am not recalling the name of standard reference that physicians use...hoping another clusterhead will come along and provide.

               Physician's Desk Reference (PDF) perhaps? 

This, as all have said, is one crazy doctor.  PDR, as suggested by Jeebs, might have the info that jon' mentioned (and as jon' said, any sane site will list triptans and oxygen).  The most commonly used online reference/app by doctors is called UpToDate.  Says here (https://nhcps.com/top-12-online-resources-for-medical-professionals/): "UpToDate is considered the go-to source for about 90% of US-based medical centers. A 118-facility study published on PubMed.gov found that most doctors and residents turned to UpToDate before any other resource." 

Edited September 3, 2022 by CHfather

[jon019]

30 minutes ago, Bejeeber said:

Physician's Desk Reference (PDF) perhaps? 

 

EDIT TO ADD,.....SEE ABOVE, posted at same time....CHfather is, as usual, so far ahead of me i don't even see his dust...

 

...nice suggestion.....believe only for drug info tho. before the internet i used to ask med school libraries or my docs office for last years copy. over 20 scripts used in my CH career....it helped to know more than what was on the script bottle. now patient insert sheets cover way more than most folks will ever need....

.....believe what i was referring to is this (never seen myself): 

UpToDate: Industry-leading clinical decision support

When you care for patients, the stakes are high and every decision counts. You need the best evidence and clinical guidance at your fingertips to answer even the most complex questions with confidence.

....subscription service for medical professionals.....this physician should have access either personally or through his practice network. website fwiw:

Evidence-Based Clinical Decision Support System| UpToDate | Wolters Kluwer

Edited September 3, 2022 by jon019

[CHfather]

13 hours ago, jon019 said:

CHfather is, as usual, so far ahead of me i don't even see his dust...

You're looking in the wrong direction.

Edited September 3, 2022 by CHfather

[CHfather]

It occurs to me, FWIW, that your doctor might have CH confused with the hemicranias (continua, paroxysmal), which have symptoms like CH and, indeed, most of the time do not respond to triptans.

[Bejeeber]

20 minutes ago, CHfather said:

your doctor might have CH confused with the hemicranias (continua, paroxysmal), which have symptoms like CH and, indeed, most of the time do not respond to triptans.

Ah ha! This sounds to me like one highly plausible theory from our light years ahead CHfather.

Like your doc could have gotten his CH and his HC transposed.

[BoscoPiko]

1 hour ago, Bejeeber said:

Like your doc could have gotten his CH and his HC transposed.

That would at least make some sense! Good observation @CHfather

[jon019]

3 hours ago, CHfather said:

You're looking in the wrong direction.

.....

[jon019]

3 hours ago, CHfather said:

It occurs to me, FWIW, that your doctor might have CH confused with the hemicranias (continua, paroxysmal), which have symptoms like CH and, indeed, most of the time do not respond to triptans.

THIS!.......please.......

[mit12]

Suffering from Clusters gives us a first hand understanding of what the term practicing medicine means. Most of us on here have been wrongly diagnosed for years and have been through a hand full of doctors. Best advise I can give is keep pushing on, if your doc does is not willing to work with you find another doc. The fact that you found this site is a huge plus as there are so many great people here that can help you in many ways. As for O2 you can go the way I did and rent an O2 welding tank purchase a regulator from Amazon or Ebay and purchase a mask through Clusterbusters. 

[OddNoodle]

On 8/31/2022 at 11:35 PM, rde050112 said:

I have been trying to get oxygen from my PCP my last 2-3 cluster periods. My symptoms check literally all the boxes of Cluster headaches but now he says they can’t be CH’s because Imitrex injections help abort the attacks. He claims the injections are not effective for cluster headaches and since they help me he won’t even consider giving me oxygen. 
Am I missing something here? Is this crazy?

! 
 

i am so annoyed on your behalf!!! I have a similar story although blessed enough that my family doctor prescribed me unlimited oxygen BEFORE I saw a neurologist that then decided women can’t have CH and told me he would never prescribe O2 for it. It so messed up that we have to fight this hard. He wouldn’t even listen when I say oxygen aborts my attacks, he implied I was making it up & it was migraines related to my menstrual cycle.

 

keep us updated!!! Hope you find a better doc soon that actually listens!!