1. Community
  2. Brain and nerves
  3. Neurological Disorders

I am writing this on behalf of my wife who has just been diagnosed with Tolosa-Hunt syndrome

Posted , 5 users are following.

Guest
Guest

I am writing this on behalf of my wife who has just been diagnosed with THS. She complained of a severe headache/eyeache behind her right eye in November 2006. When she went to her local doctor he initially diagonsed it as a sinus problem and sent her away with the usual sinus relief medication. The ache did not disappear so she went back to the doctor who then said that her back teeth could be infected and sent her to the dentist. The dentist checked all her teeth and insisted that the problem was not caused by her teeth. She then was referred to an ophthalmologist who checked her eyes and concluded that he could not see a problem with her righteye. The pain was so severe that she was unable to sleep at night and the pain was there 24 hours a day. Also her appetite was effected as she could not eat and her weight began to drop.Then her right eye turned into the corner and she had double vision so she went back to the doctor and as luck had it he was off sick and the locom doctor took one look at her right eye and told her she would need to go to the hospital to see a neurologist. the neurologist gave her a Lumbar Puncture and MRI to see if it would reveal any signs or symptoms of trouble. He then immediately admitted her into hospital for further tests. She was in hospital for 6 days when the head neurologist although not completely happy diagonsed her condition as THS and immediately put her on a course of steroids. This had an almost immediate effect in that the pain seemed to diminish and she was the released from hospital after 6 days and given a course of Steroids to continue when she got home. The dose was supposed to be decreased slowly so as to completely wean her off altogether. Initially she was on 3 x 25mg Prednisolone tablets a day and that was to be reduced to 3 tablets every second day. As soon as she stopped taking 3 a day the pain came back as severe as in the beginning. She then had an appointment with the opthalmologist who querried the dose with the assistant neurologist who admitted that he had weaned her off too quickly and immediately put her back on 3 one day and 1 the next day. Although the pain was still there it seemed to be worse on the 1 tablet days. She has an appointment this week again with the Neurologist who is going to discuss her condition with her.

I will keep you informed of her progress.

She sends all her best wishes to the other suffers as she knows what they are going through.

[i:2cb833f2fa]This message was automatically imported from the original Patient Experience[/i:2cb833f2fa]

0 likes, 3 replies

3 Replies

  • stephanie16445
    stephanie16445 Guest

    Posted

    May I asked what part of the country that you live inand if you were also told this is a rare condition.my daughter is 8 years old and has just been diagnosed with Tolosa hunt she was originally given 400 milligrams of IV steroids for two days she then went in to a steroid psychosis they realized it was too much for such a small child they then dropped her immediately down to 80 milligrams for two days 60 milligrams for 2 days she is now been on 40 and we will continue to go down. She has also just gotten out of a six and a half day stay in the hospital the only thing that has subsided is the extreme pain in her head with all of this aggressive steroid treatment she is like a bouncing ball and nothing about her eyesight has changed she continues to see double have blurred visionand complain of extreme pain in one eye I I am looking into a second opinion now you were just the first person that I found was diagnosed with the same thing anything you could tell me would helpmy name is Stephanie my daughter's name is Aylana...Best wishes for you..please help me help my baby..scared mom.
  • yellowcommando
    yellowcommando Guest

    Posted

    Hello Stephany,

    I too have had the same treatment as your daughter, IV steriods of 1000 mg a day.

    They didn't work for me.

    My condition is being monitored, and I am learning to manage and live with.

    I'd like to include my email address, but I don't think it's alowed?

     

  • sunflowersd2001
    sunflowersd2001 Guest

    Posted

    Hello I too have Tolosa hunt I have had fir two and half years. Only thing that has worked is prednisone booster 50mg for five days no taper up or off. I'm currently on day three again. However have roughly one glare up a year. Hope your wife is feeling better.
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.