[shindig]

I was diagnosed with Tolosa Hunt Syndrome on Monday, but it's not improving with treatment.

I had an MRI that showed a mass of inflammation in the cavernous sinus(looked like a jelly bean), on my trigeminal nerve.

Numerous blood tests and a spinal tap ruled out every known cause.

I started prednisone (steroids) 100mg on Monday, and from today on am supposed to take 60mg/day.

I take neurontin 900mg/day for the trigeminal neuralgia from the "inflammation" pushing on my trigeminal nerve.

The neurologist said if they pain hasn't cleared up within 1-2 weeks, to call because he would then diagnose as a tumor, and we'd need to discuss surgery.

I have some of the eye symptoms of tolosa hunt, my eyelid now sags, constant pain around it, painful to look left, right, up, down, double vision when looking side to side.

But the real pain I'm experiencing is now very distinct, and right where the MRI showed a mass. On the inside of my eye by the nose, behind, I have a constant feeling of something in there pushing on everything.

If I look up, down, left, right, it feels as if my eye nerve is rubbing on and irritating something. Every single breathe I take also gives the feeling that my sinus is rubbing against something, further irritating the area. My cheek muscle gives sharp pain starting from the same source. It also gives me a sharp headache instantly when I look up, down, left, right, for a short moment while I'm looking.

It's becoming debilitating. I find myself just laying in bed closing my eyes to reduce the irritation/pain, but can't sleep cause of the steroids, and the pain is very extreme. I can't socialize or work on projects I was working on just a few weeks ago.

I've had constant pain here for 10 months now, it's only progressed and gotten worse. The first doctors wasted months of my time telling me it was migraines, now my eye is permanently disfigured, I don't know if I have the right diagnosis or what else I could possibly do.

[eire2175]

Hi,
I'm so sorry to hear about what struggles you are going through. I've been there as I've had Tolosa-Hunt for 3 years. I didn't get a diagnosis for about 1 year as ruling out every other condition was necessary. You are not alone. And it will get better! And even though I've had it a long time, yours may be shorter, so don't despair!
Everyone's story is different of course, and I can only share mine and what I've learned and done to improve. My onset was sudden and after 3 months had accumulated to 6th, 4th and 7th nerve palsy and severe headache on the left side. The pain was horrible and debilitating. My other main symptom was and still is fatigue. My palsies remitted almost completely after three months and I have only had one relapse of one palsy which remitted in about 1 month with a increase in prednisone. My headaches have gotten significantly better! Let me say that even though I have had this illness for three years, the worst of it is behind me and I truly feel as though I am getting better "for real." You will get there too, but first I just want to share a few things I've learned along the way and hope they are helpful.

1) Get the best medical team together you can and that you feel confident about. By that I mean, you feel comfortable with them, you trust them and believe they are working hard and in always necessary to resolve your problem. If someone or something doesn't feel right; have the courage to get a second opinion, speak up or say no. You said you have a neurologist who is suggesting surgery. Is it a biopsy or more serious procedure he's proposing? Did you have an MRI with contrast to diagnose the problem? (MRI's with contrast give more information). Here's what I would suggest before any surgery options.

a) Get a second opinion, preferably from a Neuro-Opthalmologist rather than a neurologist. Even if you have to travel to get it. These are the specialists that work best with this combined condition and if nerves in your eye start having problems, (hopefully they won't and you haven't so far) you will have access to immediate help and further diagnosis. Before you go, find out if your MRI was read by a regular radiologist or a neuro radiologist. Neuro radiologists are the trained and experienced eyes you need looking at your brain to really identify the problem. Take all your lab results, any tests you had done, and your MRI with you. If you didn't have an MRI with contrast ask if you need one. Have them check your eyes fully, this can provide new information or just reassurance that your eyes are not being affected! If you don't understand what they are saying; ask. Bring someone with you if you can for support and sometimes as the patient we don't hear everything because we are stressed out!

b) Listen to your body and that includes the pain. Your body is telling you things. The specialists that I worked with initially wanted to focus on the problem and didn't really acknowledge the pain as a big symptom that needed to be managed concurrently with the other symptoms and treatment. If your pain is revving up as it sounds like it is, keep a record of it, the characteristics, what makes it worse/better and rate it; 0 being no pain 10 being most severe. Tell every provider you see about it and ask them "what are we going to do to treat it?" Be persistent, emphasizing how debilitated this has made you and how it is worsening. If they are still not very helpful in giving you options; find a good pain management MD (there are holistic ones too) to work with. They are very helpful because they figure out how to help your pain and still understand how all the meds work and treatments you are doing. In reality, it is not fair for you or your body to go on in such pain, it has debilitated you severely, and it can lead to a longer recovery period, depression and other things. Sometimes we have to be really assertive in what we need. It can also help our providers to see us as as sick as we really are so they can get more serious about our treatment. You are not a whiner, only you know what you are going through so voice it. If your interested in what I have done; please contact me. I will discuss with you anything I know and I have done tons of things to get better and collected a lot of information.

c) Prednisone and other treatments. I have a wonderful team that I searched to get because initially I was not getting the answers I wanted and was not feeling good about the providers I had. My Neuro-Opthalmologist is not perfect, but together with my other MDs we have worked hard to get me better. I have been on Prednisone for three years. Prednisone is a love hate relationship. Despite this, all the research I've done and through my own experience, prednisone is the best treatment for this condition. It is the only med that has kept my symptoms at bay and lowered my pain. If you can tolerate it, it can help. Please do some reading about it so you are aware of how it works and the possible side effects you can have both short and long term. There is a big range in side effects from mild to severe but at least you will know that if one comes up it is not a sign of another illness and can make decisions from there about what to do. If it is a worrisome one or more severe call your MD. Also, listen to your body with the taper once you go down on prednisone. If the MD goes to fast and you feel like crap or have a increase in pain/symptoms; call them immediately and discuss what to do. Again, listen to your body and be assertive.

d) Get to know your pharmacist. They are a great resource of information on medications and health questions. They also do the job of making sure all your meds can work together and not cause you more problems. You can ask them anything and often times will tell you the real deal on things that they may not tell most patients.

Best of luck with your treatments, I will hope for a quick recovery for you (take good care of yourself during this time), and please contact me if you want any other information.

[tucker37]

My daughter was diagnosed back in December, we have been going the same path but I need to ask you some things

Originally Posted by eire2175

Hi,
I'm so sorry to hear about what struggles you are going through. I've been there as I've had Tolosa-Hunt for 3 years. I didn't get a diagnosis for about 1 year as ruling out every other condition was necessary. You are not alone. And it will get better! And even though I've had it a long time, yours may be shorter, so don't despair!
Everyone's story is different of course, and I can only share mine and what I've learned and done to improve. My onset was sudden and after 3 months had accumulated to 6th, 4th and 7th nerve palsy and severe headache on the left side. The pain was horrible and debilitating. My other main symptom was and still is fatigue. My palsies remitted almost completely after three months and I have only had one relapse of one palsy which remitted in about 1 month with a increase in prednisone. My headaches have gotten significantly better! Let me say that even though I have had this illness for three years, the worst of it is behind me and I truly feel as though I am getting better "for real." You will get there too, but first I just want to share a few things I've learned along the way and hope they are helpful.

1) Get the best medical team together you can and that you feel confident about. By that I mean, you feel comfortable with them, you trust them and believe they are working hard and in always necessary to resolve your problem. If someone or something doesn't feel right; have the courage to get a second opinion, speak up or say no. You said you have a neurologist who is suggesting surgery. Is it a biopsy or more serious procedure he's proposing? Did you have an MRI with contrast to diagnose the problem? (MRI's with contrast give more information). Here's what I would suggest before any surgery options.

a) Get a second opinion, preferably from a Neuro-Opthalmologist rather than a neurologist. Even if you have to travel to get it. These are the specialists that work best with this combined condition and if nerves in your eye start having problems, (hopefully they won't and you haven't so far) you will have access to immediate help and further diagnosis. Before you go, find out if your MRI was read by a regular radiologist or a neuro radiologist. Neuro radiologists are the trained and experienced eyes you need looking at your brain to really identify the problem. Take all your lab results, any tests you had done, and your MRI with you. If you didn't have an MRI with contrast ask if you need one. Have them check your eyes fully, this can provide new information or just reassurance that your eyes are not being affected! If you don't understand what they are saying; ask. Bring someone with you if you can for support and sometimes as the patient we don't hear everything because we are stressed out!

b) Listen to your body and that includes the pain. Your body is telling you things. The specialists that I worked with initially wanted to focus on the problem and didn't really acknowledge the pain as a big symptom that needed to be managed concurrently with the other symptoms and treatment. If your pain is revving up as it sounds like it is, keep a record of it, the characteristics, what makes it worse/better and rate it; 0 being no pain 10 being most severe. Tell every provider you see about it and ask them "what are we going to do to treat it?" Be persistent, emphasizing how debilitated this has made you and how it is worsening. If they are still not very helpful in giving you options; find a good pain management MD (there are holistic ones too) to work with. They are very helpful because they figure out how to help your pain and still understand how all the meds work and treatments you are doing. In reality, it is not fair for you or your body to go on in such pain, it has debilitated you severely, and it can lead to a longer recovery period, depression and other things. Sometimes we have to be really assertive in what we need. It can also help our providers to see us as as sick as we really are so they can get more serious about our treatment. You are not a whiner, only you know what you are going through so voice it. If your interested in what I have done; please contact me. I will discuss with you anything I know and I have done tons of things to get better and collected a lot of information.

c) Prednisone and other treatments. I have a wonderful team that I searched to get because initially I was not getting the answers I wanted and was not feeling good about the providers I had. My Neuro-Opthalmologist is not perfect, but together with my other MDs we have worked hard to get me better. I have been on Prednisone for three years. Prednisone is a love hate relationship. Despite this, all the research I've done and through my own experience, prednisone is the best treatment for this condition. It is the only med that has kept my symptoms at bay and lowered my pain. If you can tolerate it, it can help. Please do some reading about it so you are aware of how it works and the possible side effects you can have both short and long term. There is a big range in side effects from mild to severe but at least you will know that if one comes up it is not a sign of another illness and can make decisions from there about what to do. If it is a worrisome one or more severe call your MD. Also, listen to your body with the taper once you go down on prednisone. If the MD goes to fast and you feel like crap or have a increase in pain/symptoms; call them immediately and discuss what to do. Again, listen to your body and be assertive.

d) Get to know your pharmacist. They are a great resource of information on medications and health questions. They also do the job of making sure all your meds can work together and not cause you more problems. You can ask them anything and often times will tell you the real deal on things that they may not tell most patients.

Best of luck with your treatments, I will hope for a quick recovery for you (take good care of yourself during this time), and please contact me if you want any other information.

[shindig]

Ugh, it's 2 years after I made this thread and I'm no better off. The inflammation went away but the pain didn't, and I've had a complete nightmare with the pain specialist I was seeing.

The pain specialist's assistant got me kicked off oxycontin after more than a year of taking it because she said I was "too young" to be dependent on narcotics. She told me to see a psychologist instead. She wrote something in my notes so when I went to my neurologist who was writing the prescription he read her notes and cut me off.

I've burned through 2 neurologists, 2 neurosurgeons, an ENT, a pain specialist, a TMJ specialist, and currently the only doctor I see is a psychiatrist from the pain clinic who writes my prescriptions for antidepressants for nerve pain.

I take 150mg nortriptyline and 600mg effexor which takes the pain down a few notches, but it's still miserable.

I even had a craniectomy MVD to decompress the trigeminal nerve but it didn't help. (pic attached)

I just had a consultation from the best neurosurgeon in the area and he said the most likely cause of pain is damage from the inflammation from tolosa-hunt syndrome, and said he couldn't help me.