I was actually doing pretty well then I had the stomach flu (on my fiftieth birthday) and our temperatures went triple digit for a lot of days. I don't handle heat well, like a lot of you. What scared me into action about seeking a second opinion is that my cognitive abilities and dizziness were so bad again. I mentioned these to the original neurologist, but she did not seem concerned. I am, though. I also have the muscle jerks back, though they are not as bad as before. Are these symptoms typical for TN? And, my eyes hurt and blur, so I have an appointment with an ophthalmologist. What is normal? What is not? Or is there a normal? I know we all have a lot of ear involvement, and I think some have mentioned eyes, but was not positive.
Also, I have never had an MRI or anything much more than an office visit. They did do a CAT scan on me in the ER when I went in for pain, before my diagnosis. Should I expect certain tests? I'm concerned that each time I have a flare, I am losing some of my freedom. I certainly can't drive like that. Anyway, I thought these questions were asked before, but as I looked, I just could not find them on either the forum or groups discussions.
What meds are you on? They can give you all the symptoms you are showing. If no meds then...
You might be having more than one thing going on here. I got muscle jerks when my b12 got low. B12 problems can cause muscle jerks, cognitive abilities to be hampered and dizziness but not usually eyes hurting. I do suggest you have your b12 checked. Or simply take an under tongue supplement(because it gets into you blood stream fast), but it has to have a very high dosage, and taken everyday, around 1000 micrograms or higher. You only need a couple of micrograms, but it takes a lot to get a few into your body. Don't take a bcomplex, there are not enough micrograms to make any difference. I'm not one of those people who say "take a vitamin, that's all you need". What I am saying is take a vitamin because you have a lot of signs of a deficiency - I had one and it was awful, had many of the signs you have, but not all, which is why you may have more than one thing going on. Take it everyday, and you'll be able to tell in about one month if it helps at all. Do it now because if it IS b12 and it goes on too long, the effects can last permanently, don't worry, though, it has to have gone on for more than a few months, but if it goes on a year it might cause more damage. But you still need to keep seeing all your docs. One reason I suspect that you have a low b12 is that your mention of stomach flu. If your b12 was at a low level before the flu, then perhaps no b12 was entering your system from food with the flu. If it's not b12 than it won't hurt an iota because this vitamin won't hurt you in high doses. But b12 doesn't cause pain, so don't think it's JUST b12. It still may all be TN. This is just a thought because many people have low b12 as they get older. http://en.wikipedia.org/wiki/Vitamin_B12_deficiency .
Now, an office visit is what is usual to diagnose TN because they rely on your symptoms. A CT scan might show an artery laying on the nerve but just as likely show nothing. I'm glad they did a CT scan to at least get a baseline and check for tumors etc. But there isn't any other tests for TN right now. Everyone has different symptoms. I don't think there is a "normal" there's a typical but even the typical can change over time.
I feel like I've lost my freedom too. I can't drive, I can't read and can't really do anything at all. My meds are strong that I only get breakthrough pain but make it hard to do anything. I'm trying to adapt but it's not at all easy.
The symptoms started before the meds, and were my presenting symptoms. Except, of course, I was a lot worse at the initial visit with the other neuro., in a lot more pain. I'm on Lyrica, Plaquenil, Tramadol and thyroid meds for low thyroid. I will keep in mind about the B12. I don't know if they checked that before. I know my vitamin D was low...not uncommon with Sjogren's Syndrome or any autoimmune disease, I am told.
I was doing well, and I suspect I will be doing well again. I feel better than I did, but it just changes from day to day, and sometimes with no reason. I THINK it is just TN and autoimmune, but I want to make sure that what needs to be done is done. I didn't know if an MRI is to be expected, or if there are other tests that should have been done.
Do you listen to audio books? I do that a lot, though I still like to read when I can.
I listen to audio books all the time, since I can't read because of the trileptal I'm on now. I just listened to Behind the Beautiful Forevers and really recommend it, especially on audio. It was an amazing book. I get cd's from the library and put them on my computer (on an external drive, or else the audio books take up all the memory on the computer) until I can listen to them. They are much to expensive to buy.
I don't know anything about Sjogren's so I can't tell you about tests but TN doesn't really have tests. A CT if you are going to have surgery. If the antiseizure meds work you have TN. A physical test to see if you have any signs for MS.
It's such a rare disease that not a lot of money goes into research, though I wonder as our population becomes older if that might change.