Hello. It has been a busy time with me. I have gotten steroids (in pill form) by the docs for a few days and my pain went away completely for the duration of the steroid treatment (it came back after the treatment). I had forgotten how it feels like to spend a few days without pain!
I have asked the docs what this responsiveness means. The docs here in Germany didn’t think all too much about it. In fact they didn’t seem to remember even why they have me the steroids to begin with.
Some docs simply said that cortisone makes everything better. But it would seem from going through old threads here that cortisone did not always help people here. So I am now wondering if responsiveness to cortisone is an important clue?
Is there anybody here who also thinks this might be meaningful (and therefore useful)? Bonus points for also adding the suspected meaning. Because as for myself I really do not know.
Well, considering cortisone is a powerful anti-inflammatory medication that reduces the inflammatory response of many painful conditions your positive response to the treatment would imply that you’re dealing with some sort of chronic inflammation that may be triggering the nerve pain.
Have you ever attempted daily anti-inflammatory therapy?
I know for me straight pain pills don’t work and straight anti-inflammatories don’t work, but the combination of the two helps control the pain.
Thank you.
I have tried some anti inflammatory pills (mostly herbs) but they did not help.
In the “fighting back book” I did not see much about inflammation. Hence my curiosity.
So you think it is normal that TN responds well to cortisone? But why would it when the problem is compression of the nerve? Maybe I missed it but that doesn’t or wouldn’t cause an inflammation, would it? And if it doesn’t then maybe my problem lies elsewhere and that would also mean that response to cortisone would be a useful indicator to not do MVD?
Hi European, I experienced the same thing this summer when I was given Prednisone for an allergic reaction. Those tablets were FABULOUS. I haven’t felt that pain-free, all over my body, since I was about 26! I only had a 5 day course and all my aches and pains came back with a vengeance after they stopped (I also felt far more depressed). However, there is a caveat. I got rosacea with the tablets, and then further attacks three weeks later and then for some further months after the tablets were finished. So, despite them appearing to be a wonderful cure-all they have strong side effects which need to be very carefully considered, especially when they are unpredictable and often incurable (I have far more sensitive skin and more flushing since I took them; it has not fully cleared up).
I do very much agree that a successful response to them is an indicator of high levels of inflammation in the body. I think, in my case, this is highlighted by the fact that when I give up sugar my TN pain is drastically reduced and, in fact, the more I improve my diet (and coincidentally lose weight) the better my TN is, so there is definitely an inflammatory component to my illness. It’s notable that many researchers now consider Alzheimer’s to be ‘Type 3 diabetes’ so if metabolic disruption can damage the brain then it’s not a huge push to imagine a high inflammatory response, like that from bad diet/high carbohydrate consumption, may be causing/aggravating some people’s nerve pain.
Good response from Azurelle that I think explains the situation very well. IMHO inflammation is far more likely to be the root cause of most all trigeminal neuralgias, rather than compression. Many people have compressions, but no TN–why is that? Something is making the nerves over react to normal stresses, and not allowing them to heal properly.
I also agree that WWTE has a good point. I have had some success with elimination diets (which I will talk about at some point) and am getting more testing done to see if I can continue to improve my diet and cut out any possible sources of inflammation.
Obviously steroids are not a good long-term solution, but it is interesting to hear reactions to them (I’ve never been on steroids).
Hi. Many thanks.
Yes steroids are no long term (and probably not even a good mid term) solution. I also got side effects and felt pretty bad after I stopped taking them.
I am not sure I would go as far as saying that inflammation is the main cause of TN. At least for TN1 MVD helps a majority of people immediately. I cannot see how MVD can stop inflammation if inflammation is the cause.
For TN2 the success of MVD is not zero either (though yes, there it seems something else is often at work). What I can imagine is that the effect of compression is only felt by those who tend to have inflammation or special kinds of inflammation. That could be: us.
Though note that the inflammation markers on my blood are not high. So I really don’t know why cortisone or how cortisone can help us.
Maybe there is sth about steroids that we do not know. Maybe it is simply also a pain killer or pain suppressor. In that case it could lead us down a garden path.
Yes, that is exactly what I am postulating. Inflammation is disturbing the nerve somehow to the point that it can’t handle any kind of (normalish) damage or insult. And it can’t heal properly. Removing the compression (if that is the only issue) would at least temporarily provide some relief for many TN sufferers. For ATN, the damage is more likely to be in other parts of the nerve.
I can’t imagine what being pain free for even a day would feel like. I’ve used steroids in the past for asthma but that was prior to ATN. I hated the side effects but loved the positive aspects of steroids. Hmm. I’m going to have take a bit if time to think on this one. For me the side effects were tough on my body so I hated having to be on them. But to take even a day or two vacation from this persistent burning and aching pain I’d really love that!!!
It felt exactly like that: like a holiday from the pain. It had me immediately do sports (sth for which I haven’t be motivated nor had the time for ever since the pain started). But unlike a real holiday the after-effects were not positive. So I wouldn’t do I again I don’t think unless there would be good reason to believe that eventually the pain stays away for good (and it doesn’t look like that bases an anything that was said here. I wish a TN researcher could comment on this thread).
