Vicki- I haven't tried that yet, but have had decadron iv for migraines before and developed ickthisia (uncontrolled limb movemnet), oral steroids make my skin come off in white patched but simple kenalog shots help my migraines so maybe it will help this as well.
Linda- Sorry you are allergic to pain meds! I don't have an allergy but a resistance so it usually takes high amounts to work for me. I have had so many nightmarish visits to the er for my migraines but this time for my TN the doc was superb. I think that is what scares me about the er-- you never know what you will get! :-/
Thanks to all for the helpful inputs and telling me what worked for you! I will make a list and check into your suggestions. I pray you each have moments of relief :)
****On a side note: Can we PLEASE stop the debating here? I am in pain, as we all are, and I do not care for the added stress when all I asked for was some advice that I can decipher what to do with on my own. Thank you. ****
Bhamilton, I understand and sympathize with what you mean about debating. When we are flaring and in pain the last thing we want to do is weed through what seems like senseless arguing. I was reading through a past post around here the other day when I was not feeling good and found myself wanting to punch kittens or something (I would NEVER punch kitties, but you get my drift, right?) :) In this case, I don't think it is debate as much as a warning to those as desperate as you and I to know how to sift through the fraud from the real deal.
I apologize that it has distressed you and added a level to your anxiety.
Back on topic: I have been thinking about this issue alot actually because it appears that my ER trip was of a great experience (other than the typical wait because unidentified pain means you are way down the list for seeing a doctor). I wonder if there is some coorelation to the size of your community and the hospital that serves it? Meaning, I live in a good sized town, with a hospital that is a magnet hospital as a model to other's nationwide. There is a good coordination of patients, and most ER doctors are actual internists with ER training. The hospital also has on staff neurologists, oncologists, all that stuff for weird cases -- like TN. My ER doctor had no problem spotting what it was quickly. And had the ability to call a collegue on staff to answer all the questions he had. I am not sure that all hospitals are equal that way.
I don't believe I would have gotten the same response if I would have gone to the hospital 25 miles south of me that serves a smaller community so the hospital has less resources.
Perhaps if you live in a community where here are a few different choices in ER, you might do some research to see how well versed the hospital is on cutting edge type treatments. What the hospitals requirements are for staff.
I don't know that this is necessarily 100% the way I described it, but rather a working theory.
All I know is that when I went to the ER, I was treated wonderfully and given pain relief and some answers.
We just moved here to central CA, in an ag town that has one hospital... When we lived in Knoxville, I had a few options, and yes I agree that magnet hospitals are better, though sometimes it still is like a "lottery of sorts". Funny thing, is that here in the er back in August is where I was actually pre-diagnosed with TN, if that makes sense. I was/am curious of what other people have tried. I'm not saying that I would try any of that or not try any of that- just that I was curious. I understand the need to make sure people are properly informed. Don't worry, I am a veteran of the medical world- as a student, a professional and a patient. I do my research... I am the kid that read Hole's anatomy instead of playing outside like most children. Probably odd, but eh! ;) Thanks for your input!