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Post Cvt Headache Survey

This survey is part of an initiative by the International Cerebral Venous Thrombosis (CVT) Consortium to characterise current clinical practice in the assessment and management of post-CVT headache. There are no right or wrong answers - we are interested in what you actually do in your practice, not in guideline recommendations. The survey takes approximately 8-10 minutes to complete. All responses are anonymous.

Thanks for answering!

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This survey is conducted for research purposes. If the results are published, authorship will be determined according to the ICMJE recommendations (icmje.org). Providing survey responses alone does not meet authorship criteria. Respondents may be acknowledged in the Acknowledgments section of any resulting publication. If you have already completed this survey and wish to be included in the Acknowledgments, please contact us directly at: mhernandez@igtp.cat

Q1. Country of practice:

Q2. Type of centre:

Academic / tertiary hospital

Community / district hospital

Dedicated stroke centre

Private practice

Other

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If other, please specify:

Q3. Specialty:

Vascular neurology

General neurology

Stroke neurology

Neurology trainee

Headache specialist / neurologist

Other

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If other, please specify:

Q4. Years of experience in neurology:

< 5 years

5-15 years

> 15 years

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Q5. Approximate number of new CVT cases you personally manage per year:

< 5

5-15

16-30

> 30

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Note: Questions in this section refer to the acute CVT admission.

Q6. Do you routinely assess pre-existing headache history at CVT admission?

Yes, systematically (structured interview or questionnaire)

Yes, informally as part of clinical history

Only if the patient reports it spontaneously

No, not routinely

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Q7. Which features of acute CVT headache do you routinely document at admission? (select all that apply)

Onset pattern (thunderclap vs progressive)

Severity (numeric scale)

Location / laterality

Positional component

Associated symptoms (nausea, vomiting, photophobia)

Signs of raised ICP (papilledema, sixth nerve palsy)

Relation to Valsalva

I do not systematically document headache at admission

Q8. How do you manage acute CVT headache? (select all that apply)

NSAIDs (ibuprofen, naproxen)

Paracetamol / Acetaminophen

Opioids

Acetazolamide (for raised ICP)

Lumbar puncture (for raised ICP)

Patient's usual headache treatment (if pre-existing)

No specific protocol - symptomatic management only

Note: Questions in this section refer to the standard 3-month post-CVT follow-up visit.

Q9. At the 3-month post-CVT visit, how does headache typically come up? (select one)

I ask about it routinely in all CVT patients

I ask only if the patient looks symptomatic

The patient usually brings it up spontaneously

It is not usually addressed unless it is the main complaint

I do not have a routine 3-month visit for CVT

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Q10. If headache is present, which characteristics do you routinely document? (select all that apply)

Frequency (days/month)

Intensity (numeric scale)

Quality / Character

Location

Associated symptoms (nausea, photo/phonophobia)

Worsening with Valsalva / positional component

Impact on daily activities / work

Analgesic use and frequency

History of headache prior to CVT

Mood / anxiety symptoms

Duration of individual headache episodes

Episodic or constant pattern

Pulsatile tinnitus

Fundus examination / papilledema

I do not routinely document headache characteristics

Q11. Do you use any validated tool to assess headache burden? (select all that apply)

HIT-6 (Headache Impact Test)

MIDAS (Migraine Disability Assessment)

ICHD-3 diagnostic criteria

Headache diary

HADS (Hospital Anxiety and Depression Scale)

Unstructured clinical interview

I do not use a specific tool

Q12. Do you attempt to classify post-CVT headache using ICHD-3 criteria?

Yes, systematically

Yes, but only if phenotype is clear

No - I manage it as a generic headache disorder

No - I am unsure how to classify it

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Note: Vignettes describe real patients. Please respond based on what you would do in your usual practice, not on what you think is the 'correct' answer.

VIGNETTE 1

35-year-old woman · 3 months post-CVT (superior sagittal sinus) · Fully anticoagulated (rivaroxaban) · mRS 0
At the visit she mentions bilateral pressing headache, 6/10 intensity, occurring 12 days/month, partially relieved by ibuprofen. No papilledema. No focal signs. No prior headache history.

Q1a. What would you do at this visit? (select all that apply)

Reassure and watchful waiting

Start acute symptomatic treatment

Start preventive treatment

Request additional imaging (MRI/MRV/CT venography)

Request lumbar puncture to rule out raised ICP

Refer to headache specialist

Screen for depression / anxiety

Modify anticoagulation

Other

If other, please specify:

Q1b. If you would start preventive treatment, which would you choose first? (select one)

Amitriptyline

Topiramate

Beta-blocker (propranolol, metoprolol)

Acetazolamide (if raised ICP suspected)

Calcium channel blocker (flunarizine)

CGRP antagonist (erenumab, fremanezumab, galcanezumab, eptinezumab)

Venlafaxine

Candesartan

I would not start preventive treatment at this point

Other

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If other, please specify:

VIGNETTE 2

42-year-old woman · 6 months post-CVT (transverse sinus) · mRS 0 · Anticoagulation stopped at 6 months (no thrombophilia) · History of migraine without aura before CVT
She reports that her migraine has worsened since CVT: now 18 days/month (previously 4-6/month), pulsating, moderate-severe, with nausea and photophobia. She has used triptans on 14 of those days. MRI and MRV: complete recanalization, no new lesions.

Q2a. What is your main diagnosis? (select one)

Worsening of pre-existing migraine triggered by CVT

Medication-overuse headache (triptan overuse)

Both: worsened migraine + medication overuse

Persistent post-CVT headache with migraine phenotype

I am not sure

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Q2b. What would you do? (select all that apply)

Withdraw triptans and manage overuse headache

Start / optimize migraine preventive treatment

Request further investigation (LP, neuroimaging)

Screen for mood disorder

Restart anticoagulation

Refer to headache specialist

Other

If other, please specify:

Q13. Which factors make you decide to start preventive treatment for post-CVT headache? (select all that apply)

Number of headache days per month

Headache intensity

Impact on daily activities or work

Headache phenotype (migraine vs tension-type vs intracranial hypertension)

Presence of medication overuse

Patient's explicit request

Mood / anxiety comorbidity

Failure of acute treatment

I rarely start preventive treatment for post-CVT headache

Other

If other, please specify:

Q14. If you use headache days/month as a criterion, what is your usual threshold for starting preventive treatment?

>= 4 days/month

>= 6 days/month

>= 8 days/month

>= 10 days/month

>= 15 days/month

Variable - depends on severity and impact

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Q15. How do you choose which preventive drug to use? (select all that apply)

Based on headache phenotype (migraine: beta-blocker/topiramate; tension-type: amitriptyline; intracranial hypertension: acetazolamide)

I use the same first-line drug regardless of phenotype

Based on patient comorbidities (depression, hypertension, weight)

I extrapolate from primary headache guidelines

I refer to a headache specialist for this decision

I do not prescribe preventive treatment

Q16a. Which ACUTE treatments have you used for post-CVT headache in the past 2 years? (select all that apply)

NSAIDs (ibuprofen, naproxen)

Paracetamol / Acetaminophen

Triptans

Opioids

Acetazolamide (for raised ICP)

Lumbar puncture (for raised ICP)

None - I do not prescribe acute treatment

Q16b. Which PREVENTIVE treatments have you used for post-CVT headache in the past 2 years? (select all that apply)

Amitriptyline / nortriptyline

Topiramate

Beta-blocker (propranolol, metoprolol)

Flunarizine / Calcium channel blocker

CGRP antagonist (erenumab, fremanezumab, galcanezumab, eptinezumab)

Acetazolamide (for suspected raised ICP)

Venlafaxine / Duloxetine

Melatonin

Botulinum toxin type A

Lumbar puncture (therapeutic, for raised ICP)

Candesartan

None - I refer to headache specialist

None - I do not treat preventively

Q17. Do you routinely screen for medication-overuse headache in post-CVT patients?

Yes, always

Yes, if the patient uses analgesics frequently

No, but I would address it if raised

No, I do not usually assess this

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Q18. At which time points do you specifically ask about headache in CVT patients? (select all that apply)

Hospital discharge

1 month

3 months

6 months

1 year

Every visit until resolution

Only if the patient reports it

Q19. Do you have access to a headache specialist for consultation in your centre?

Yes, routinely

Yes, but waiting time > 3 months

No - I manage headache myself

No - I refer to external centre

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Q20. What are the main barriers you face when managing post-CVT headache? (select all that apply)

Lack of specific evidence / guidelines

Uncertainty about how to classify the headache

Patients do not report headache spontaneously

Concerns about drug interactions with anticoagulation

Limited consultation time

No access to headache specialist

Lack of validated outcome measures

Low perceived priority compared to other CVT sequelae

Other

If other, please specify:

Q21. What would most improve your management of post-CVT headache? (free text)

Expandir

If the results of this survey are published, would you like your name to be included in the Acknowledgments section?

Sí

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Please provide your name and affiliation

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