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TOLOSA HUNT SYNDROME
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TOLOSA HUNT SYNDROME





Hello

My wife has been diagnosed with Tolosa Hunt Syndrome and treatment with steroids has not worked.

I would like to hear from anyone who has had this quite rare condition or who knows of anyone who has and also other treatments available.
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Avatar n tn
I was diagnosed with tolosa hunt syndrome in January.  From what I know about the disease, it is a disease of elimination.  Additionally, one of the strongest indicators of it is quick response to the steroids(which I had).  If I were your wife I would insist to be tested for other diseases that can cause those symptoms, since it seems unlikely that she has tolosa hunt and is not responding to the treatment.
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Avatar n tn

Hello Christina

Thank you very much for your quick response.
Do the steroids stop all the pain for you ?
My wife's pain is only relieved during the day after taking the tablets first thing in the morning then from about 5.00pm she has to take pain killers approximately every 4 hours.
She is unable to sleep any more than 4 hours at a time before the pain wakes her up again.
The doctor took her off steroids because they were not working and they are now investigating again.
She has double vision in the eye and a droopy lid which has now completely shut and she is unable to open it.
She is having all the MRI's and Lumbar Punctures again because they are trying to find something else and in the meantime they have put her back on steroids for two weeks to see how that goes.

Lookin forward to your response.

Regards

Bob Enright
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Avatar n tn

Hello Christina

Could you please if you can respond to my queries.

We would be both very appreciative.


Regards

Bob
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Avatar n tn
My name is Connie, and I was diagnosed with Tolosa Hunt Syndrome in January 07. I have responded well to steroids, but it is a slow process for me. I understand there are various other conditions that have similar symptoms. In fact I was initially diagnosed by the GP with Trigeminal Neuralgia, and then Temporal Arteritis, before the Neurologist diagnosed THS.
I hope you have some answers by now for your wife. Good Luck.

I am happy to hear about anyone else who has been diagnosed with Tolosa Hunt Syndrome, given it is such a rare condition.
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Avatar f tn
Hi,
I have been diagnosed with Tolosa Hunt Syndrome in January 20010 all i can say is what a nightmare I have had.
All Doctors have been brillant, so many tests but with the help of steriods and other tablets my progress is very slow !!!! has any one or are suffering with constant ear pain that runs down the sude of the neck ???? have had ear checked an all clear but am now becoming to my wits end with this pain..... anyone please help to make me understand this syndrome


Many Thanks Jenny Holmes
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Avatar m tn
I was diagnosed with probable tolosa hunt in May 2011 afer 8 weeks of agony.  I have been on steroids since May ever time i taper i suffer awful pain.  I recently have begun to suffer from the ear pain that travels into my neck and is extremly painful-I too have had the all clear from Ears Nose Throat doctors but am seeing nurologist again in 10 days-cerrently I am supposed to be on 5mg of prednisolone but have had to increase to 15mg.  I have read about radiation tratment am seroiusly considering it.  I hope you have had some respite from this truely horrendous condition.  best wishes
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Avatar f tn
Hi I was diagnosed with ths in 2013 and I am still not responding to any treatment. I have been on very high doses of prednison for 18 months with no response. At the moment I am on chemotherapy tablets to suppress my immune system and many pain killers including morphine patches. The next stage is radiotherapy to reduce the lesion on the 3rd cranial nerve.
I also have lost all the feeling in my right foot and at the moment I am loosing strength in my other limbs. I get a lot of pain in all my joints which stops me sleeping. The dizziness and sudden pain in my head and eye is so bad at times it knocks me to the ground. Please does anybody else have any of the other problems that I have would be good to hear your stories many thanks
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Avatar f tn
Hi I was diagnosed with ths in 2013 and I am still not responding to any treatment. I have been on very high doses of prednison for 18 months with no response. At the moment I am on chemotherapy tablets to suppress my immune system and many pain killers including morphine patches. The next stage is radiotherapy to reduce the lesion on the 3rd cranial nerve.
I also have lost all the feeling in my right foot and at the moment I am loosing strength in my other limbs. I get a lot of pain in all my joints which stops me sleeping. The dizziness and sudden pain in my head and eye is so bad at times it knocks me to the ground. Please does anybody else have any of the other problems that I have would be good to hear your stories many thanks
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