Couldn't find what you looking for?

TRY OUR SEARCH!

:-( I am25 years old and recently diagnosed with tolosa hunt syndrome. I am in alot of pain and taking predisone. It doesnt seem to be working. I am experiencing double vision and blurred vision. I am scared I am going blind. Is there a cure for this?

Loading...

im a 36 old male also with toloso hunt syndrome i would ask your physician to get you off predisone, to many unnecessary side effects and look for other options, i've tried everything in the past from immatrix, to naproxen, to accupuncture, and i recently have been perscribed a medicine called topiramate and its workings wonders for me i haven't had a headache in months. its been a godsend for me. this is just a suggestion, but if it works why not give it a try, just ask and see what they suggest or recommend, from one sufferer whos been there to another hang in there. hey we should start a web site or a blog, cause from what i understand there not alot of us out there.
Reply

Loading...

to the 25 yr old with tolosa hunt - have you recieved any relief and if so has it relapsed? Just might have some ideas from my own personal experiences with this same condition. posted 4-01-08
Reply

Loading...

In response to any of you who have been diagnosed with Tolosa Hunt. Any info you could provide as to how you are responding would be greatly appreciated. I was diagnosed on October 07. Have been on prednisone since. I have tapered down, but am still not able to get off with returning pain. Any of you have the same symptoms?

Thanks

Ski
Reply

Loading...

There is a treatment for this through steroids. Please contact neurosurgeon.
Reply

Loading...

I am a 37 year old female who has recently been diagnosed with Tolosa Hunts Syndrome sometime in late May of 2008. As most of you know, there isn't a lot of knowledge regarding Tolosa Hunts Syndrome and it is quite frustrating. I wanted to share my story in the hopes that this may help anyone or aid toward future research of this condition. It is quite painful and inconvenient to say the least but it could be worse as you'll find out.

I fell very ill for three days with what seemed like the flu a week before thanks giving in 2008. My symptoms were nausea associated with vomiting, extreme diarrhea, extreme exhaustion, headache and fever. On day two of the 'flu like' symptoms I noticed that I couldn't see anything out of my left eye. The contrast was off, couldn't interpret certain colors, there was some swelling, drooping of my face on the left side, quite a bit of pain in and around my eye, ear, neck, base of my scull, jaw, and in the front part of my face (left nasal area and teeth). I had some stabbing type of pain in my head. I also had numbness with periodic tingling on the left side of my face as well, however, seemed to primarily be on the left side of my forehead and by my temple. I went to my primary care physician who referred me to an eye dr. The eye dr ran a series of field tests and determined that my pupil wasn't dilating properly and that my vision was 20 over 200. My eye Dr asked me to get an MRI and referred me to an eye specialist. The eye specialist did a similar exam and read the MRI. Her findings were that I had optic neuritis and my MRI was abnormal. I was referred to get a MRA, blood work, and to start a high dose steroid treatment for the optic neuritis at the local emergency room right away. After all was done I was diagnosed with a left internal carotid artery aneurysm. I was called the next morning by a surgeon and admitted to a hospital the day after thanks giving for surgery that was to take place sometime over the weekend. Before the 'surgery' I had a CTA scan for the surgical team to have a better look at my situation. The Dr read my CTA and determined that NOW there wasn't an aneurysm in my carotid artery and told me that he wasn't the appropriate person to assess my situation. Not cool of the surgeon however Woohoo! No aneurism! But what’s wrong with me I thought? What do I do now?

My vision got better due to the steroid treatment (I had only one treatment of several recommended this was interrupted as they ‘thought’ I had the aneurism)

Shortly after my release from the hospital I had another bad flare up about a week later. I went through some of the same processes to find a wonderful neurologist who did a series of tests which involved, MRI, Spinal Tap, and extensive lab work. Everything came back very normal... Nevertheless, I show physical characteristics and cant deny the symptoms I have. My neurologist has been working closely with an neurological ophthalmologist and they are in agreement that I have Tolosa Hunts Syndrome. Odd thing is that the Tolosa hasn't backed off - seems to be chronic and stress is a factor. When I'm really stressed it does make the flare up worse. My flare ups are never convenient and have had me in the emergency room frequently. I have been treated with morphine and other pain medication to get me through the tough days and high dose steroids starting at 60mg (3x20mg) for five days, then 40mg (2x20mg) for 5 days and then 20mg (1x20) for five days. There have been other variations of this regiment. (Note: Prednisone makes me feel like I'm coming out of my skin with agitation/anxiety. I have prescribed xanex to help balance this, however I rarely take it as I am concerned with the addictive nature of this drug) The most difficult part of this is when I start tapering off the steroids because I'm hoping it has cured me for a little bit giving me some time to feel normal or better however this isn't the case. The flare up happens again and then I have to start over with the high end dose of steroids. My symptoms have been worsening and have included the following - more severe swelling of the left side of my face. It's very noticeable in my jaw, cheek around my eye. My eye sometimes almost swells shut, pupil looks abnormal, tear duct leaks for up to an hour at a time. Pain that was mainly in my head, ear, eye, face, neck, etc has now spread to my left joints i.e. ankle, knee, hip, shoulder, elbow, wrist, hand, and also in worse cases in the muscles. On an occasion it seems that the pain is radiating to my right side. Additionally I have had some speech problems from time to time, issues with focusing or remembering things, and mild fever. Very frustrating since my job is detailed oriented. Lastly, the exhaustion that’s associated with it is not one to be worked around. It stops me in my tracks.

Something’s my Dr has requested of me is to eliminate stress, keep a healthy weight, no drugs, smoking, or alcohol, start exercise, get good rest and keep a healthy diet.

I have to say that I am pleased that I do not have the aneurism! Tolosa is the better of the evils but it is not a blast especially with how little drs know about it. For example: After I had been diagnosed I ended up in the ER with a flare up. I told him what I had and he had to do a Google search to figure out how to help me. Goodtimes.

I'll keep you all posted on future treatments as my next step is to see the neurological opthomoligst (sp)for a path forward.

I'll keep you all in my prayers!
Reply

Loading...

My 63 y/o husband just released after 2 days from hospital today (Christmas) with diagnosis of Atypical Headache, Diplopia < L 4th N Palsy => suspicious for Tolosa Hunt Syndrome.

No prior history of headache, smoking, alcohol. Headache began in late Sept/early Oct. Became severe w/i last 2 wks. Started w/trip to Internist mid Dec, thought sinus infection but had double vision down low, scheduled repeat visit for following Tues. Ended up in ER on Monday night, CT scan showed nothing remarkable. Saw Internist' PA on Tuesday, she wanted to run MRI STAT, but the office assistant said that the internist said we didn't need the MRI STAT. Meantime, my husband is about ready to claw his eyeball out. And since we were going to Allergy doctor the next day, they didn't want to give any pain meds.

We followed up next day with Allergy doctor, who did a C/T scan in his office (which looked good) but called in favor with neurologist to see husband immediately. Neurologist ordered Lumbar Puncture & MRIs w & w/o contrast STAT and called in favor to get ophthalmologist to see ASAP. Neurologist staff said they'd call in a prescription for some steriods, but go get the tests, they'd call us with the results, & come back and see us in Feb. February???? I asked about pain med. They said don't worry they'd let us know after they saw the results.

Ophthalmologist diagnosed diplopia and 4th Nerve disease & said we needed to be referred back to Neurologist before Fed. He called neurologist. Husband sees neurologist & ophthalmologist and has lumbar puncture and MRIs all the same day Wed. My husband still in horrible pain. I called neurologist office asking about pain and what to do. No one ever calls me until the next day. They finally call and say just start taking the steroids and if we run out of pain medicine from our emergency room visit, I can call the office, the doctor will be out, but they can handle it.

Monday morning, Dec 20, we are out of pain med, neurologist is on vacation. The partner doesn't talk to me but decides to give him divalproex ER and refills only the ultram from the ER (but not the torodol). I pick up the ultram. My husband takes the ultram and it makes his headache (or his eyeache, more specifically) increase dramatically! I try to call the doctors office but they do not have an answering service. I call back the next day and inquire about their after hours policy, they say you just have to go to the ER. I've decided we are on the wrong track for solving my husband's problem. I ask if I could possibly get a copy of his spinal tap report, his MRI reports, ophthalmology reports in case we end up going to the ER over the Christmas holidays. They agree. I go to pick them up and while en route place a call to my own neurologist (across town, that I haven't seen in 6 years) and beg them to see a new patient tomorrow even though they have no openings. They agree.

My husband is seen, the history is carefully listened to, in office neuro evaluations performed, she reviewed the reports I brought with us, went back into her office for a few minutes and came back saying she thought she new what was going on but he needed to be admitted to the hospital to get on a low dose of morphine immediately (he did not like the idea of morphine) to try to break the pain cycle, then run another very specifically sliced MRI looking for something in particular for which she thought he would need high doses of steroids.

Bingo! He was admitted to the hospital, placed on morphine, the MRIs were run and look fine, along with some other tests (there is another item that needs to be ruled out but another specialist believes it is a red herring. She states that Tolosa Hunt can present with every test coming back normal, so it is a matter of ruling all else out. The main thing is to break the pain and then work on the inflammation. She put him on IV steroids as soon as the MRIs came back ok. By the next morning, she transitioned my husband from morphine to norco (hydrocodone) and began determining what the dosage level he needed to be able to be pain free while we wait for the steroids to do their job. It only took 24 hours to tweak the pain dosage and we were able to be discharged. The prednisone she prescribed is 100 mg for 5 days, then 60 mg per day until further notice. She does want to see us back in 1 1/2 wks to evaluate if this therapy is appropriate. Obviously, if his condition deteriorates, we would contact her sooner. As a side note, my neurologist suffers from migraines herself, so perhaps this may give her some special insight into the agony that patients feel when they have "brain pain". (Her attitude was quite different that the other 2 neurologists we first dealt with - maybe they've never "felt" any brain pain, they've only learned about it!)

Another interesting note, one of the internists on duty stated she had only seen one case of Tolosa Hunt in her entire career and that was when she was a resident.

From what I have now read online, I suspect within a couple of weeks, we will know for sure if my husband actually has Tolosa Hunt or not. I hope to be able to report back that her aggressive treatment has helped. I can state that she aggressively treated me in 2003 for an intractable migraine that had me hospitalized for 11+ days and in pain for 4 more months. She thought I would never recover, but she put me on a drug cocktail and slowly weaned me off and to this day, I rarely ever have a migraine. She is pretty top notch in my book! I will be praying for all of you! :-D
Reply

Loading...

I was informed that I had THS back in January and have been on steriods since.  They do not seems to help at all.  Was informed that the headaches would go away after about 8 weeks and I still have them.  What do you suggest?  I have seen 6 different doctors since January and one a specialist.  Can't get a straight answer out of them.  I have double vision all the time and sometimes I don't think the eye is working at all.  How have others dealt with this problem?
Reply

Loading...

i got ths was in pred for 5 months (DID NOT MISS ONE DOSE) 60 mg, was hungry cause refuse to gain weight (never being fat) HATE PREDNISONE but got cure 100% so far if i get it again willrather keep my eye close than take pred got ALL of side effect, if u are taking pred hadnot choice to finishbut dont miss any DOSES
Reply

Loading...

I was diagnosed with inflammatory third nerve in my left eye in February 2011.  I had been unwell for a few days before - flu like - and woke up one morning with double vision which gradually got worse through the next day or two and then the PAIN!! Terrible, boring pain in the middle of my eye - described it to my doctor as a red hot knife being stabbed into it.   After two weeks of CT and MRI scans, spinal tap, blood tests and chest x-ray to check for sarcoids - my eye doctor put me on prednisone 5mg x 8 per day and tapered it over the next few months.   Almost immediately I felt relief from the pain but the double vision took about 3 months to correct itself.  I finally came off the pred in the October 2011 and in the spring of 2012 I had exactly the same problem in my right eye this time and immediately was put back on high dose pred and now after almost a year am down to 5mg x 1 daily.   Still have mild pain in both eyes and especially when I'm tired etc. 

I had a terrible bout of chicken pox when I was 15 and had about 3 years of post viral illness. When I was in my 20s I had Bell's Palsy on each side of my face which started off with the same flu like symtoms and the stabbing, knifelike pain, this time in my temples. 

I was exposed to shingles on both occaisions with the inflammatory third nerve and when I mentioned this to my doctor he didnt seem to think this was related.  I definitely do however think there is a connection with the Shingles virus and cranial nerve palsies and would be very interested to hear if someone else has had both Bells Palsy and Tolosa Hunt.  

Reply

Loading...

Finally ive found others with this bizzare condition. I was diagnosed when i was 16years old (10years aago). I went from doctors practically telling me i was imagining the pain behind my eye to them rushing me in after my mri scan. I am sick and tired of going to bloody accident and emergency and doctors telling me they dont know what to do with me and asking me what i think they should do!!!

So one day i wwoke up myface completely paralysed droopey eye, smile to one side of my face and its never been the same since :( the pain as im sure you all know felt likie i was being constantly stabbed in the eye, double vision etc

so i tried steroids which worked for a while whilst making me fat, aggressive and all the rest. Amuno suppressants which caused constant abcessess where i was having surgery every 4 weeks to remove them. So i took myself of everything and was fine for 2 years. UNTIL NOW..... pains back, face feels like i have been punched in it, stiff neck, blurred vision i really have had enough its getting me so down.

Has anybody tried medication i havent????

Reply

Loading...

I am a 31 yr old female diagnoseed in June of 2012 with possible Tulosa-Hunt by my docs in Texas and docs at The Mayo Clinic in Rochester. None of them will commit to the diagnosis ssince it is only a diagnosis of exclusion. My story starts alot like all of yours. I had jaw pain first in Feb. then the right-side facial paralysis & conjunctivitis in April, saw a neurologist who said Bell's but I had no drooping. She said migraines, sent me to an opthamologist to be sure, treated me with infusions that made things way worse and then virtually checked out of my situation. Then in June, my right eye paralyzed and torqued so everything was at a 45 degree angle; my neurologist didn't return my phone calls and my gynecologist ended up finding me a new neurologist when I went in for an annual and had to explain I wasn't looking at her funny on purpose. Got hospitalized immediately and for a week, blasted with steroids, tests, antibiotics etc. New MRI, spinal CT scan...Big ole mass in right cavernous siunus. New neurologist is a God-send because he cares and diagnoses me with Tulosa-Hunt "for lack of a better option and because all other tests came back negative," but wants me to go to Scott & White to see a neuro-opthamologist to get a second opinion. Went home on 60 mg of prednisone. Neuro-opthamologist says its way too big of a mass to be THS & swears its got to be lymphoma & sends me to oncologist. Oncologist does new spinal and PET scan. Spinal came back with "abnormal bodies" but they werw undefinable and PET scan came back negative so he suggested Mayo Clinic. Stay on the steroids, they said. I had some relief and got my vision back but the headaches, light sensitivity and pain was still unseemly. We made the trip up there in March of 2013 and they also thought that the best diagnosis was likely THS but by then I had been on 60 mg of prednisone since Nov. 2012 because both attempts to taper down in Aug and Oct had failed miserably. MRI showed "mostly resolved" brain mass so Mayo insisted on tapering down. I had to go on short term disability to do it. Got down to 10 mg by Dec finally and the left side of my face went numb. Jan 2014 MRI showed right side back up and a new mass in the left cavernous sinus. I FLIPPED OUT on all my doctors. Back up to 60 mg. They have since put me on Cellsept an immuno suppressive mild chemo and down to 30 mg of prednisone and it seems to help - sort of. A rheumatologist is monitoring it because its typically used for lupis. Less bad days anyway but the bad days are still realky bad. Topimirase also masks the pain really well but if you miss a dose, you're done so I use "masks" appropriately here. I did have to give up having kids on the Cellsept though...which is a major bummer but with no consistent quality of life, not like that was going to happen anyway. I go back to Mayo next week for the first MRI on the Cellsept and to meet with a ENT-neurosurgeon who maybe willing to go in there and take a look, if not get a peice - which we all know is unlikely. We shall see though. I'd be happy to guinea pig for us all to have some answers.
Reply

Loading...

I was diagnosed 3 years ago, a couple months after I started having facial nerve pain on the left half of my face. 

The inflammation on the MRI went away with prednisone but the pain didn't improve much, 3 years later it's still agonizing and never stops. My eye waters and I get a stabbing feeling deep behind when I move it left/right/up/down. 

I take 175mg nortriptyline and 600mg effexor for the nerve pain, but still have bad days of pain. 



Reply

Loading...


I am 57 now and have had Tolosa Hunt syndrome twice, first time was in my mid thrities with a dime sized (17.09mm) mass at the back of my eye socket, the most recent being 11/2014 with a much smaller mass, only 7mm, same place as before. I took prednisone at 60 mg daily for over two months after getting out of the hospital this time, then decreased until I was only taking 10mg a day. While the side effects were horrendous, the steroid did work and I was able to see again normally but was still on the 10 mg dose because symptoms were not completely gone. I still had some numbness and intermittent stabbing pains above and around my eye. At least until a week ago when my eyes got out of sync again. Not as bad as the first time or last November as I can move my eye and couldn't either time before, but still difficult. The only reason I can come up with for this fast recurrence is my allergies being very severe this season due to extreme local flooding and weather changes. I have read everything I can find about it, and nothing mentions allergies and sinus problems as a cause so I'm grasping. My vision has not been changed, it's just that my eyes don't sync and in order to function and work, I have to wear a patch.

I don't know if you'll even get this response, but reaching out to others with this condition, especially as it has recurred twice since the original diagnosis is important. It scares me too and if I could retire I would so it wouldn't be such an issue. I get tired of all the side effects of the steroids, and never knowing when or if it will pop up again. Best of luck to you on your journey, I hope yours has dissipated and stays gone.
Reply

Loading...

I am a 41 year old female. I was diagnosed with Tolosa-Hunt in April 2014 after a four day hospital stay. I was on IV steroids for a week and then 60 mg, etc. I tapered all the way down to 3 mg every other day when I relapsed in May 2015. My condition is definitely affected by stress. Both occurrences were immediately after standardized testing.

I would love to be off of steroids. I used to be fairly thin, but it is hard for me to remember what I looked like before because I have gained 25lbs. I am able to carry on daily functions, etc. I am even working out now. I just pray that this is not a chronic condition for me. I have had tons of tests. Everything has come out clean except for the fact that I have inflammation of the right cavernous sinus.

I wish more people were on-line. It sucks to have something so rare that even your doctors have to google it.

Reply

Loading...