diagnosed with Tolosa Hunt, but not clearing even after steroids

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I was diagnosed with Tolosa Hunt syndrome in August this year after a 10 day spell in hospital. All the usual symptoms: chronic gnawing headache on left side behind my eye and across temples, diplopia in my left eye, loss of sensation in forehead on left. An MRI scan showed inflammation of the cavernous sinus on the left side.

I was prescribed prednisolone, which seemed to easy the pain somewhat, enabling me to sleep, but now I have come to the end of the course of drugs and the headache has returned with force.

I'm due to be having a rescan shortly to see if there has been any effect on the inflammation.

I'd be interested to hear from anybody who has been through this or knows any more than is posted on this thread. Do people ever see a complete recovery from THS and if so, does the damage to the eye movement caused by 6th nerve lesion generally recover?

all my best wishes to anyone else out there going through this...

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  • Posted

    I was diagnosed with ths Sept 2022. I too spent 12 days in hospital with IV treatment. Went home with course of steroids orally and ended back in hospital a week later... after the second week stay things started to look up however the headaches stuck around for about 3 weeks as the swelling went down I continue on neurotin now with imitrex as back up. Today I am taking my second dose of prednisone as ths has made its flare up return. This has only been second time in a year. So not so bad.

    I too hope to connect to others with ths. Me and my neurology team work well together but it would be nice to visit with others that know how I am feeling. Thanks

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  • Posted

    Hello there, I am in exactly the same position as you, although I haven't yet actually finished my course of Prednisolone yet.  I have another week to go as the dose reduces but as you have experienced, my headaches are returning as the doses decrease.  I am due to see the consultant again in a few weeks and I'll keep you posted of anything interesting and relevant that I might discover.  It's an awful condition isn't it?  I do hope we can both come through this eventually.  I was told that my eyesight might return to normal after about 6 months but so far, it has been two months and the eyesight hasn't improved at all.  Grim. I was also told that even if my eyes do recover, I am liable to get recurrances of the syndrome occassionally, which presumably means more steroid treatments complete with all the diabolical side effects...

    My best wishes to you and hope that you make a full recovery soon.

    Rod.

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    • Posted

      hi Rod

      have you regained any lateral eye movement? My eye very slowly regained the ability to move outwards. One of two things was probably happening here

      a. the pressure on the nerve decreased as the inflammation subsided

      b. new nerve function built in to the muscle from existing pathways

      as the movement recovered, I have slowly retrained my eye away from double vision. It has taken about 1 year since protracting the condition, but my eye function is now nearly 100%. The headache still occurs most nights, but isn't nearly as bad as it was originally (I can now counter it with paracetamol or ibuprofen). I also benefit from getting the occasional head massage. I'm fairly convinced that the condition has come about due to tension in my head and jaw caused by work related stress. The head/body massage enables me to now sleep right through without headache. It's slow, but getting better.

      I took three courses of steroids, including one long tail one for about 6 months, I'm now on a drug called Azathioprine...can't really work out whether it's working or not but it's similar in function to steroids and apparently gentler for the body.

      There is a bit of a painful psychological side to the condition as well. It gets to the point where it almost becomes boring/unbelievable to talk about..."how's the head?" ..."well it's agonising every night and I never sleep properly, but you probably now think I'm looking for attention". all I can say is stick with it...there are going to be bad days but there's definitely some light at the end.

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