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!