Tolosa-Hunt Syndrome is a rare disorder characterized by headaches, along with weakness and paralysis of particular eye muscles.
Hi there, My name is Maria. Im a 41yr old female living in New Zealand. I have been tentively diagnosed with Tolosa-Hunt. It started in Feb last year. I had what felt like sinus pain in my forehead and down the right side of my nose. Then the headaches started and then double vision and tunnel vision. The pain was extreme!! I went to my Doctor, had eye tests, got a 2nd opinion, even tried acupunture. I was told i was having migranes and was put on different medications for months none of which worked. My GP wrote to the Neurologists at the hospital but they wouldn't see me. Eventually my GP told me to go into hospital and told me what to say. They did a CAT scan but nothing was picked up. I kept saying it feels like something behind my eye. I was discharged with more migrane medication. I was very unwell at this stage still working trying to carry on. I asked my GP whatelse can i do!! Pay for a MRI scan so thats what i did and they picked it up straight away. I have been on oral steriods for 11mths. I have been tapered off them several times but the pain and problems increase. As you know they really don't know much about this disease. At the moment i have two neurologists and two ophthalmologist trying to decide the best plan of attack for me. I have recently been told it is likely im going to require many years of treatment!! I am more than happy to go into more detail re treatment etc. I hope this message finds you and you and your family are well. Kindest regards Maria
Hi, I am 30 years old and was diagnosed with Tolosa Hunt Syndrome last year. I was thirty-five weeks pregnant with twins when I began having severe headaches. I attributed them to pregnancy migraines or my neck being out of place. Then, I began having double vision and loss of vision. I was so sick from the headaches that I didn't give the vision problem much thought. I went to my optometrist who referred me to a neurologist, but I couldn't get an appointment for another couple weeks. I went to the ER (at my family's insistence) and the OB on call said the babies were fine and gave me some Tylenol with Codeine for the headache. He seemed baffled by the double vision, but didn't do any tests (my regular OB was out of town that weekend). After a week of these symptoms, I finally contacted my OB who requested that I go to the hospital immediately. I was actually in labor - I had NO idea I was because I'd been having contractions throughout the pregnancy and was in so much pain from the headaches that I didn't realize how often I was having them. My OB did an emergency c-section within a few hours - two weeks earlier than planned. My blood pressure sky rocketed and they thought I had pre-eclampsia. They ultrasounded my legs and artery in my neck for clots. The next morning they did a CAT Scan and MRI to look for clots. My sons couldn't breathe on their own and were being shipped to a NICU downstate - the doctors decided to ship me too because they couldn't figure out what was wrong with me. When I got to the hospital, they did an MRI, Lumbar Puncture, took 12 vials of blood, EEG, and x-rays. There were 5 neurologists standing around me looking in my eyes and asking me questions. They tentatively diagnosed me with Tolosa Hunt Syndrome, which they admitted they did not know a lot about since it is very rare (1 in a million people get it). They described it as inflammation of the optic nerves in my left eye. I was treated with massive doses of IV steroids for 5 days. Then, I was given pills to take. Their goal was to taper me off the steroids (I took 7 pills one week, 6 the next, 5 the next, etc.). They were optimistic that my vision would return to normal (I really wasn't). It did after about 1 month. It was gradual. The neurologists could not tell me what caused the syndrome - they mentioned maybe a compromised immune system from the pregnancy, but could not pinpoint it exactly. I am hoping maybe someone else with Tolosa Hunt could share their story. I am wondering what the chances of it coming back are - or if it was a sole incident brought on by the twin pregnancy. A year later, I am now having some other problems that may or may not be related to this. There is so little information out there that even the specialists can't help me. Again, my symptoms were: severe headache, loss of vision, double vision, drooping eyelid, dialated pupil
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.
Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.
Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.FIND YOUR COMMUNITY
Our rare disease resources include e-books and podcasts
Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.