I also have chronic sinus problems, too. I have to believe that they are related. I have herpes simplex (fever blister) that used to occur under my nose. I wonder if this virus brought about the THS. (Same poster 41 year old female)
I had a bad fever blister under my nose and developed THS. Shockingly, I no longer get fever blisters. I have been on Valcyclovir when I need it. I think the herpes virus triggered the syndrome.
I am now 42yrs and I am permanently blind in my left eye. 4 years ago I experienced a tremendous amount of pain in my head, and felt like a truck was sitting on top of my head squishing me, it also felt at times like there was knives stabbing me and sometimes like acid was being poured on certain spots in my head. At first it started around December where I had major headaches, then in January and February it got worse.
I think it was about March I had an episode of Bell's palsy, where my left side of my face droop down. My regular doctor prescribe prednisone and within a week or so my face pic back up and the pain in my head wasn't so bad.
Within a week or two the pain started up again and it got really bad by the middle of April I began to have double vision, I was been diagnosed with 6 cranial nerve palsy.
At that time my primary physician referred me to an eye doctor, the eye doctor referred me to an opthamologist, and then the opthamologist referred me to a neuro opthamologist. You can only imagine how much time this wasted.
Now during all that time they had me get cat scans, MRI's, body scans and more.
The neuro opthamologist finally ordered an MRI of the brain and orbits.
....... it was at this time that he found a man that needed to be removed or???
Well, while they figured it out it took time and I was waiting on an appointment with a neurologist. In the meantime I was going through more extreme pain and almost passing out from time to time from the pain and dizziness. One day I started losing vision in my left eye I went to the emergency room and they ask me about seeing a neurologist and I explained I had an appointment with one in acouple of days and they told me they cannot do anything for me that I need to wait to see my neurologist.
By the next day I started losing vision in the center of my eye, I told the neurosurgeon this when I seen him in his office and he jumped up out of his chair and said well this can not be a "-------" because your symptoms are increasing too fast.
At this point he left the room and the nurse came in and told me she's going to make an an appointment with the neuro opthamologist.
I started to cry and asked them isn't there anything they can do for me besides send me home. The nurse said that she really could not help me.
Because I cannot drive myself and I about an hour and a half from the hospital so I began calling my neuro opthamologist to get in touch with him, hoping he could help me.
Later that evening he called me back and told me if I can have someone drive me back out there again he will admit me into the hospital.
Well, I could not get a ride out there for 2 days and he knew I was coming. I was seen by him, he check my eyes and noticed I had already lost vision then he told me that he is having me admitted immediately & will start me on steroids ...high doses of steroids.
I was left sitting in the emergency waiting room for about 8 hours. Once again the pain started increasing more and more and more. As I finally got into the door of my room I started going into in an insane amount of pain & then went blind completely in my left eye and my vision has never ever came back.
I know that if the doctor would have made sure they treated me immediately I would not have gone blind, permanently blind! Please do not take this for granted and keep yourself checked constantly and don't let any doctor push you to the side.
4 years later I am still suffering with extreme headaches, sometimes feeling like a knife is stabbing me, sometimes feeling like I am inside of a pressure container, sometimes feeling like little acid drops are dropping on certain parts of my head, sometimes just a regular migraine headache. No... my vision has never came back, and last week I was just told that I have to Tolosa Hunt syndrome.
I think it was about March I had an episode of Bell's palsy, where my left side of my face droop down. My regular doctor prescribe prednisone and within a week or so my face pic back up and the pain in my head wasn't so bad.
Within a week or two the pain started up again and it got really bad by the middle of April I began to have double vision, I was been diagnosed with 6 cranial nerve palsy.
At that time my primary physician referred me to an eye doctor, the eye doctor referred me to an opthamologist, and then the opthamologist referred me to a neuro opthamologist. You can only imagine how much time this wasted.
Now during all that time they had me get cat scans, MRI's, body scans and more.
The neuro opthamologist finally ordered an MRI of the brain and orbits.
....... it was at this time that he found a man that needed to be removed or???
Well, while they figured it out it took time and I was waiting on an appointment with a neurologist. In the meantime I was going through more extreme pain and almost passing out from time to time from the pain and dizziness. One day I started losing vision in my left eye I went to the emergency room and they ask me about seeing a neurologist and I explained I had an appointment with one in acouple of days and they told me they cannot do anything for me that I need to wait to see my neurologist.
By the next day I started losing vision in the center of my eye, I told the neurosurgeon this when I seen him in his office and he jumped up out of his chair and said well this can not be a "-------" because your symptoms are increasing too fast.
At this point he left the room and the nurse came in and told me she's going to make an an appointment with the neuro opthamologist.
I started to cry and asked them isn't there anything they can do for me besides send me home. The nurse said that she really could not help me.
Because I cannot drive myself and I about an hour and a half from the hospital so I began calling my neuro opthamologist to get in touch with him, hoping he could help me.
Later that evening he called me back and told me if I can have someone drive me back out there again he will admit me into the hospital.
Well, I could not get a ride out there for 2 days and he knew I was coming. I was seen by him, he check my eyes and noticed I had already lost vision then he told me that he is having me admitted immediately & will start me on steroids ...high doses of steroids.
I was left sitting in the emergency waiting room for about 8 hours. Once again the pain started increasing more and more and more. As I finally got into the door of my room I started going into in an insane amount of pain & then went blind completely in my left eye and my vision has never ever came back.
I know that if the doctor would have made sure they treated me immediately I would not have gone blind, permanently blind! Please do not take this for granted and keep yourself checked constantly and don't let any doctor push you to the side.
4 years later I am still suffering with extreme headaches, sometimes feeling like a knife is stabbing me, sometimes feeling like I am inside of a pressure container, sometimes feeling like little acid drops are dropping on certain parts of my head, sometimes just a regular migraine headache. No... my vision has never came back, and last week I was just told that I have to Tolosa Hunt syndrome.
I was diagnosed with Tolusa Hunt Syndrome November of 2014. Long story short, I was admitted to the hospital with pain to the left side of my face namely right behind the left brow. They put me on Morphine for the pain. I went through MRI, CT scan, blood work only to rule out any other possibilities. I was referred through a Neurologist to a top notch Neuro-Ophthalmologist in Houston. Dr. Rosa Tang. She diagnosed me with Tolosa Hunt Syndrome and began the steriods interveniously immediately. High doses. My eye at that time was off to the right and I was unable to control both eyes. I had to wear a patch over one eye to be able to see. The pain finally subsided after the second day on morphine. Then they switched me to hydrocodone for pain. They also had me on 1000 mg of Valtrex. I had had a flare up of herpes 2 weeks before this happened. I will mention also that I had been under a lot of stress the weeks before the headache on the left side of my eye area. I was released from the hospital after 5 days. They sent me home with 60 mg of Prednisone for 2 months; then 40 mg for 2 weeks; then 20 mg for 2 weeks; then 10 mg for 2 weeks, then stop. Besides all the horrible side effects Prednisone can do to a human body, the stuff worked. I was back to normal. My eyes were normal again. It took my body awhile to get back to normal from the steroids though. But nonetheless it did work.
November 6, 2015 almost a year later, I began to experience symptoms I was all too familiar with! I knew what I was up against this time and sought help immediately. I called Dr. Tang's office but she was not available to see me that day and referred me to another ophthalmologist that she works with. I went in that day and he prescribed 40 mg of Prednisone for 7 days; then 30 mg of Prednisone for 7 days; ;then 20...then 10 mg for 30 days, then stop. I am currently on 30 mg right not on my 12th day of steriods. I feel awful but I have no headaches. I feel I caught it early and I am in better condition than last year when it took me by surprise and didn't know what the hell was happening to me. But this time I'm vigilant and taking it on with caution. I still cannot drive because my eyes are distorted and I see double vision from about 2 feet and further. It's hard for me to focus my eyes. I have to wear a patch over one eye in order to function and see my surroundings better. I also have to mention, that I did have a flare up of herpes like last time right before this happened to me again. In saying this, I do believe that the 2 are related in my experience. Even though these Neuro-ophthalmologist say the opposite,(they say they do NOT have a cause) I say it's pretty cut and dry in my experience. Also, it's caused by stress. These flare ups for me have been stress induced. I may also mention that the more sleep you can get and keep the eyes closed, the better the healing and faster the healing will occur. Surround yourself in relaxation if at all possible. Keep your eyes hydrated. In other words, keep eyes moist don't let them get dry. I found this to be helpful in my experience. Thank you for allowing me to write my experience with Tolosa Hunt Syndrome
November 6, 2015 almost a year later, I began to experience symptoms I was all too familiar with! I knew what I was up against this time and sought help immediately. I called Dr. Tang's office but she was not available to see me that day and referred me to another ophthalmologist that she works with. I went in that day and he prescribed 40 mg of Prednisone for 7 days; then 30 mg of Prednisone for 7 days; ;then 20...then 10 mg for 30 days, then stop. I am currently on 30 mg right not on my 12th day of steriods. I feel awful but I have no headaches. I feel I caught it early and I am in better condition than last year when it took me by surprise and didn't know what the hell was happening to me. But this time I'm vigilant and taking it on with caution. I still cannot drive because my eyes are distorted and I see double vision from about 2 feet and further. It's hard for me to focus my eyes. I have to wear a patch over one eye in order to function and see my surroundings better. I also have to mention, that I did have a flare up of herpes like last time right before this happened to me again. In saying this, I do believe that the 2 are related in my experience. Even though these Neuro-ophthalmologist say the opposite,(they say they do NOT have a cause) I say it's pretty cut and dry in my experience. Also, it's caused by stress. These flare ups for me have been stress induced. I may also mention that the more sleep you can get and keep the eyes closed, the better the healing and faster the healing will occur. Surround yourself in relaxation if at all possible. Keep your eyes hydrated. In other words, keep eyes moist don't let them get dry. I found this to be helpful in my experience. Thank you for allowing me to write my experience with Tolosa Hunt Syndrome
I've also been diagnosed with Tolosa Hunt. This is my second time. Last year was my first time. I'm on prednisone and it's not working. They also just put me on Azathioprine 50 mg. Hoping it works! It's miserable being like this. I'm going to suggest to my neuro the "topiramate" that you mentioned above. Thanks for the tip and advise! How are things now with your eyes? Again thanks!
Hello. I too have been diagnosed with the same. Last year was my first time (December 2014 and back again almost a year later November 2015). Back on Prednisone and they added Azathioprine 50 mg to the cocktail this time. So far, it's not working. still experiencing the double vision. dull ache to the right side behind the right eye. Not severe but dull nonetheless. In the morning is when I see the best. My vision becomes distorted with double vision as the day progresses. I see very well up close up to about 2 to 2.5 feet with no double vision which is great. Anything further, it's a nightmare. I have to wear a patch over one eye to be able to function.
I'm writing to see if you have seen any results with your situation and what medications you are now on for this? Thanks again! Good to know someone else out there that understands and has heard of this rare syndrome! :)
I'm writing to see if you have seen any results with your situation and what medications you are now on for this? Thanks again! Good to know someone else out there that understands and has heard of this rare syndrome! :)
same here. I think THS is triggered by the virus. Same exact thing happened to me. Thanks for sharing.
Hello,
I am a 35 year old active duty soldier. On July 6, 2016 I woke up in the middle of the night with extreme pain behind left eye. So bad I puked. Intially, thought I was just sick until the double vision popped up two days later and the pain did not let up. Had all the test ran and majority came back normal. Initial diagnosis was shingles by the opthomalogist. Was on valtrex and steroid pack (small dose). Symptoms did not change and visited the ER frequently. After a month of trying many different medications and trying to get into a neurologist sooner rather than later, I was able to see a Neruologist at KU Med center. Tolosa Hunt Syndrome is her diagnosis. 80mg x 1 week of presnidone follwed by 60mg x 3 weeks, 40mg x 2 weeks and a follow up at 6 weeks. I do have to wear a patch on left eye, I have numbness over left side of lip, get a tingling sensation around left eye, and of course the pain is horrible like we all know. It has left me in tears at some points. I do take a combination of IB profen, Percocet to ease the pain where I can at least get through the days. Not sure how I can be capable of doing my job and it seems that it typically returns in every comment that has posted. Hoping for the best and everyone to have a full recovery.
Airborne!!
I am a 35 year old active duty soldier. On July 6, 2016 I woke up in the middle of the night with extreme pain behind left eye. So bad I puked. Intially, thought I was just sick until the double vision popped up two days later and the pain did not let up. Had all the test ran and majority came back normal. Initial diagnosis was shingles by the opthomalogist. Was on valtrex and steroid pack (small dose). Symptoms did not change and visited the ER frequently. After a month of trying many different medications and trying to get into a neurologist sooner rather than later, I was able to see a Neruologist at KU Med center. Tolosa Hunt Syndrome is her diagnosis. 80mg x 1 week of presnidone follwed by 60mg x 3 weeks, 40mg x 2 weeks and a follow up at 6 weeks. I do have to wear a patch on left eye, I have numbness over left side of lip, get a tingling sensation around left eye, and of course the pain is horrible like we all know. It has left me in tears at some points. I do take a combination of IB profen, Percocet to ease the pain where I can at least get through the days. Not sure how I can be capable of doing my job and it seems that it typically returns in every comment that has posted. Hoping for the best and everyone to have a full recovery.
Airborne!!
I dont know how long agonthis post was but I have read that aurothtomic arthritis is associated with THS. I was diagnosed on 9 Aug 2016 after a month of test name it and I did it
I am 33 years old and recently diagnosed with Tolosa-Hunt Syndrome. My right eye is still paralyzed. I was wondering how long before it comes back.
Hi,
Your story sounds very familiar to me as my daughter is going through similar experience. How are you now? How did things progress? We are in the UK & do not know of anyone with THS. Kind regards ...
Your story sounds very familiar to me as my daughter is going through similar experience. How are you now? How did things progress? We are in the UK & do not know of anyone with THS. Kind regards ...
Are you still experiencing these symptoms?
I have possible nerve damage from Ramsay Hunt Syndrome with complications of shingles in the inner left ear which affects facial nerves. Can these nerves repair themselves? If so, how long will it take?