Tolosa-Hunt syndrome

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Disease Profile Top Comorbidities Top Medications

Names	Tolosa-Hunt syndrome Non-specific inflammation of the cavernous sinus Non-specific inflammation of the superior orbital fissure Painful Ophthalmoplegia Reflex sympathetic dystrophy Abbreviations: THS Category: Nervous System
Prevalence	Published: 300 cases in the US (Iaconetta 2005). ARI Data: Insufficient data available at this time.
Age of Onset	No data.
Description	Patients with Tolosa-Hunt syndrome experience episodes of severe headaches surrounding the eyes, along with restricted eye movement that is painful (ophthalmoplegia). Normally, only one eye is affected and will frequently appear protruded. Symptoms may also include nerve abnormalities, such as eyelid drooping, double vision, large pupil, and numbness of the face. This disorder typically occurs in relapsing flares. The cause of Tolosa-Hunt syndrome is unknown but is associated with the inflammation within the eyes and may be autoimmune. Not confirmed as an autoimmune or autoinflammatory disease. No ICD-10 Code. SNOMED Code: 95794005
Patient Groups	Tolosa-Hunt Syndrome Support Page (Facebook)
Bloggers	Click here to tell us about a blogger that writes about Tolosa-Hunt syndrome.
Symptoms	PainConstant pain behind the eyeDouble visionVision problemsHeadache
Resources	Link to Clinical Trials Link to PubMed
References	Link to Cleveland Clinic
	Profile by: Autoimmune Registry Profile updated September 2024 Charts generated Feb 19, 2025 at 06:51 PM ET

Tolosa-Hunt syndrome sex breakdown

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Tolosa-Hunt syndrome age breakdown

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Patient ethnicities

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Data Source: Graphs on this page represent data in electronic health records and self-reported survey results from the All of Us research database. As of July 2024, there are 451,000 sets of electronic health records and over 560,000 participants who have completed initial survey questions. This dataset, however, may not be representative of the US population. A snapshot of the data can be found here. To protect participant anonymity, results derived from fewer than 20 participants are not graphed.
The All of Us Research Program is supported by the National Institutes of Health, Office of the Director: Regional Medical Centers: 1 OT2 OD026549; 1 OT2 OD026554; 1 OT2 OD026557; 1 OT2 OD026556; 1 OT2 OD026550; 1 OT2 OD 026552; 1 OT2 OD026553; 1 OT2 OD026548; 1 OT2 OD026551; 1 OT2 OD026555; IAA #: AOD 16037; Federally Qualified Health Centers: HHSN 263201600085U; Data and Research Center: 5 U2C OD023196; Biobank: 1 U24 OD023121; The Participant Center: U24 OD023176; Participant Technology Systems Center: 1 U24 OD023163; Communications and Engagement: 3 OT2 OD023205; 3 OT2 OD023206; and Community Partners: 1 OT2 OD025277; 3 OT2 OD025315; 1 OT2 OD025337; 1 OT2 OD025276. In addition, the All of Us Research Program would not be possible without the partnership of its participants.

Tolosa-Hunt syndrome top comorbidities/symptoms

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Tolosa-Hunt syndrome top autoimmune comorbidities

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* Disease is suspected as autoimmune, but unconfirmed.
Data Source: Graphs on this page represent data in electronic health records from the All of Us research database. As of July 2024, there are 451,000 sets of electronic health records collected from participants. In the United States, because electronic health records use billing codes for diagnoses, some conditions may not be perfectly captured by these data, especially if the condition is rare. A snapshot of the data can be found here. To protect participant anonymity, results derived from fewer than 20 participants are not graphed.
The All of Us Research Program is supported by the National Institutes of Health, Office of the Director: Regional Medical Centers: 1 OT2 OD026549; 1 OT2 OD026554; 1 OT2 OD026557; 1 OT2 OD026556; 1 OT2 OD026550; 1 OT2 OD 026552; 1 OT2 OD026553; 1 OT2 OD026548; 1 OT2 OD026551; 1 OT2 OD026555; IAA #: AOD 16037; Federally Qualified Health Centers: HHSN 263201600085U; Data and Research Center: 5 U2C OD023196; Biobank: 1 U24 OD023121; The Participant Center: U24 OD023176; Participant Technology Systems Center: 1 U24 OD023163; Communications and Engagement: 3 OT2 OD023205; 3 OT2 OD023206; and Community Partners: 1 OT2 OD025277; 3 OT2 OD025315; 1 OT2 OD025337; 1 OT2 OD025276. In addition, the All of Us Research Program would not be possible without the partnership of its participants.
Anti-inflammatory / specialty medications and supplements

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Tolosa-Hunt syndrome top immunosuppressants / autoimmune therapies

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* Biologic medications.
Data Source: Graphs on this page represent data in electronic health records from the All of Us research database. As of July 2024, there are 451,000 sets of electronic health records collected from participants. A snapshot of the data can be found here. To protect participant anonymity, results derived from fewer than 20 participants are not graphed.
The All of Us Research Program is supported by the National Institutes of Health, Office of the Director: Regional Medical Centers: 1 OT2 OD026549; 1 OT2 OD026554; 1 OT2 OD026557; 1 OT2 OD026556; 1 OT2 OD026550; 1 OT2 OD 026552; 1 OT2 OD026553; 1 OT2 OD026548; 1 OT2 OD026551; 1 OT2 OD026555; IAA #: AOD 16037; Federally Qualified Health Centers: HHSN 263201600085U; Data and Research Center: 5 U2C OD023196; Biobank: 1 U24 OD023121; The Participant Center: U24 OD023176; Participant Technology Systems Center: 1 U24 OD023163; Communications and Engagement: 3 OT2 OD023205; 3 OT2 OD023206; and Community Partners: 1 OT2 OD025277; 3 OT2 OD025315; 1 OT2 OD025337; 1 OT2 OD025276. In addition, the All of Us Research Program would not be possible without the partnership of its participants.
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Patient-reported 7-day average pain
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Patient-reported 7-day average fatigue
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General physical health
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General mental health
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Social and relationship satisfaction
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General quality of life
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Ability to carry out social roles and activities
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Data Source: Graphs on this page represent data in self-reported survey results from the All of Us research database. As of July 2024, there are 560,000 participants who have completed these surveys. This dataset, however, may not be representative of the US population. A snapshot of the data can be found here. To protect participant anonymity, results derived from fewer than 20 participants are not graphed.
The All of Us Research Program is supported by the National Institutes of Health, Office of the Director: Regional Medical Centers: 1 OT2 OD026549; 1 OT2 OD026554; 1 OT2 OD026557; 1 OT2 OD026556; 1 OT2 OD026550; 1 OT2 OD 026552; 1 OT2 OD026553; 1 OT2 OD026548; 1 OT2 OD026551; 1 OT2 OD026555; IAA #: AOD 16037; Federally Qualified Health Centers: HHSN 263201600085U; Data and Research Center: 5 U2C OD023196; Biobank: 1 U24 OD023121; The Participant Center: U24 OD023176; Participant Technology Systems Center: 1 U24 OD023163; Communications and Engagement: 3 OT2 OD023205; 3 OT2 OD023206; and Community Partners: 1 OT2 OD025277; 3 OT2 OD025315; 1 OT2 OD025337; 1 OT2 OD025276. In addition, the All of Us Research Program would not be possible without the partnership of its participants.
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Concerns about ability to pay
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Feeling unheard by healthcare providers
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Patient employment status
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Patient insurance coverage
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Join the registry!

Data Source: Graphs on this page represent data in electronic health records and self-reported survey results from the All of Us research database. As of July 2024, there are 451,000 sets of electronic health records and over 560,000 participants who have completed initial survey questions. This dataset, however, may not be representative of the US population. A snapshot of the data can be found here. To protect participant anonymity, results derived from fewer than 20 participants are not graphed.
The All of Us Research Program is supported by the National Institutes of Health, Office of the Director: Regional Medical Centers: 1 OT2 OD026549; 1 OT2 OD026554; 1 OT2 OD026557; 1 OT2 OD026556; 1 OT2 OD026550; 1 OT2 OD 026552; 1 OT2 OD026553; 1 OT2 OD026548; 1 OT2 OD026551; 1 OT2 OD026555; IAA #: AOD 16037; Federally Qualified Health Centers: HHSN 263201600085U; Data and Research Center: 5 U2C OD023196; Biobank: 1 U24 OD023121; The Participant Center: U24 OD023176; Participant Technology Systems Center: 1 U24 OD023163; Communications and Engagement: 3 OT2 OD023205; 3 OT2 OD023206; and Community Partners: 1 OT2 OD025277; 3 OT2 OD025315; 1 OT2 OD025337; 1 OT2 OD025276. In addition, the All of Us Research Program would not be possible without the partnership of its participants.