Dear fellow sufferers.
My pain doc asked me a very interesting simple question, and I was baffled by it.
I thought I post it here.
He asked about my brain fog. Specifically he asked if I get brain fog only with the meds (this site is full of such stories and indeed I also get med brain fog) or if the pain itself is associated with brain fog, even when I don’t take meds (let’s call that one pain brain fog).
I said that I also get pain brain fog. For me, this alwys seemed only natural - both come together (pain and brain fog) and this was true even before I got my first meds.
I never questioned in all those years why my pain is associated with brain fog (I guess I didn’t because the pain is physically so close to my brain). But now that I think about it: if I had leg pain that would be the same type of pain (odd to think about that, but it’s thinkable) then I’d be very surprised if that pain would associate with brain fog. I would think that I should be able to continue working etc and which I currently can’t with my current pain (as it also comes with brain fog).
I was wondering: are we all similar in this, or am I maybe an odd one out? I assumed till now (and so far the doctors agreed) that I have TN (type 2 - though here the agreement by local doctors stop - they don’t use “type 2” category (see also my other post on that)).
But if I am alone or near alone in also having brain fog along with the pain then maybe I need to double check my diagnosis, as would all others who also have brain fog with the pain.
Thank you. And sorry if this is a stupid question.
I don’t recall anything specific about pain brain fog in Dr Casey’s book.
Hi, No. Not a stupid question, I can relate to something that could be called a ‘pain brain fog’. I agree that it’s related to the pain being so close to the brain. I can’t concentrate on anything much more than trying to control the flight or fight stuff I experience when I get hit so hard in the face with electric shock. Even the less intense ones come with fight or flight as anticipation of escalation of the pain. Brain shuts down from shock almost. That’s why we’re here; to discover as much as we can about this dis-ease thru sharing and maybe make it a little easier for each other.
Dr Casey will just have to print a new edition with more info. ;o)
For me, I thought a lot of the brain fog was from the meds. However, I had lidocaine with dexamethasone injections in my cheek below my eye where the pain is for me mostly, from my ENT and within minutes the pain disappeared (which I don’t recommend as it seems to have spread since getting this done). All my anxiety and brain fog went away, I did exceptionally well on an exam at school that morning (I am a medical student), studied for a few more hours and came home full of energy and raked leaves in the yard for 3 hours! Best I had felt in over 3 years and on depakote which makes me feel terrible and my blood work shows mild metabolic acidosis from it which doesn’t help. Then 3-4 days later the pain came back, along with the brain fog, fatigue, and anxiety.
I have the exact same feeling as you about the pain in the leg idea and I think thats why no one understands. I feel like if I had pain anywhere else in my body, I wouldnt be nearly as tired or anxious or irritable or unable to think the way I know I am capable.
FYI, I do not have an official TN2 diagnosis, but see a neurosurgeon in 2 weeks and I’m 99% certain that’s what it is but have yet to have an MRI also. Anyway, you are not alone.
The triennial nerve is being associated with migraines more and more (in fact several members here with ATN also have migraines). Brian fog is commonplace in migraines so it makes a horrible kind of sense that ATN could be linked to foggy thinking as well. I haven’t found any official clinical links yet but it does seem to add up.
Thank you all for your answers.
I had seen the discussions on the site with regard to migraine overlap. Migraine also runs in my family so that would make additional sense to me.
To me, it would appear that this overlap and the brain fog itself, is very meaningful and currently not being given the attention in medicine that it would appear to deserve.
For example, it doesn’t sound appealing that to treat something that comes with symptoms X and y (where X is that pain and y I the brain for) with something against X but which increases y (as many of the pain meds that we are given do).
Having checked out a bit more research on migraine just now - it seems that as of last year there is - for the first time - a specialised medication on the market for migraine sufferers (some antibody stuff). Has anybody tried this yet on this site? Who knows, perhaps it can help (some of) us, too?
It looks expensive though.
One thing I would like to mention (I don’t have TN but I do have Fibromyalgia) is that Low Dose Naltrexone significantly helped with my Brain Fog and it helped greatly with my Fibromyalgia which has a lot to do with nerve pain. After being on LDN for about six months, my sciatic pain was gone also and hasn’t returned since. That was about 8/2011.
Interesting. I never heard of that drug. Was the anti-brain fog the intended target? Or was it supposed to help in some other way?
Also, I looked up the brand new anti migraine medication. It’s called CGRP monoclonal antibodies. Again, if anybody has tried them please give us a shout (they seem to help about a third of migraine sufferers very well).
I found one gentleman with TN who tried it…https://vimeo.com/185115211# . The intended purpose for LDN in Fibro was for the pain…but it helps with insomnia, stamina/energy, brain fog. It increases one’s endorphins while they sleep so that when they awake they have a sense of well being. At a Low Dose…naltrexone is used for autoimmune problems. It helps one’s immune system so the body can help itself. www.ldnresearchtrust.org
The only problem I had with Low Dose Naltrexone is the filled AVICEL was used that caused me low-grade headaches and low-grade nausea. Once that was changed, it was fine. There can be a little adjustment period at the beginning…weird dreams mostly…not nightmares. Not all people have this. I would start at a low dose and work up from there.
I have always noticed the inability to focus when the pain gets intense and a lack of constant focus when the pain is less severe because I’m always trying to distract myself from the pain I constantly feel at some level. I had to stop school before finishing my bachelor’s degree because of it.
It was not the meds because I wasn’t on them yet.
Thanks to everyone for writing about different drugs. Apparently, the doctors I’ve encountered like to prescribe the drugs they think i need and then stop trying to improve from there. I definitely now have notes to take to my neurologist.
I’m 6 years post-MVD surgery. It was a huge failure and I read recently that the MVD procedure is a non-recommended procedure at this time.
Thanks again for all the info sharing.
Yes. I will also ask about these new meds myself at my next appointment.
Sorry this MVD didn’t work for you. Do you also have TN type 2? I was also told that the MVD isn’t for me - especially since no scan showed any blood vessels impacting my nerve.
Hi this is my first post on here and it is a bit of a huge monster but hopefully helpful to someone! I suffered from TN 2 since 2005 and struggle a lot with pain brain fog. For me the best thing I have done is focus on how pain is processed in the brain instead of what is happening in my face…personally I feel I have much more control on my brain than my face and I can help myself make the most of my available concentration and feel happier now I understand more about the brain and pain. Now I don’t get as stressed trying to always fight the pain but make the most of what I can do and improve that while accepting some of my limitations that I did not have before TN2 without getting with a little more understanding and kindness for myself.
From a neuroscience perspective pain is thought to be mainly processed in the cerebral cortex where higher thinking is also carried out. It makes sense if pathways and systems in that area have become more developed and ingrained to dealing with pain that function for other higher thought processing is diminished and results in pain brain fog because the resources of this area and other areas of the brain can become more wired to deal with pain instead of other things. I am trying to make this as simple as possible because it is very confusing and still not fully understood by neuroscientists but these are the basic pain pathways…‘From these nuclei, nociceptive information is relayed to various cortical and subcortical regions, including the amygdala, hypothalamus, periaqueductal grey, basal ganglia, and regions of cerebral cortex,’ as described in this complicated but interesting if you stick with it document called 'Pain Processing in the Human Nervous System: A Selective Review of Nociceptive and Biobehavioral Pathways
If we work hard when we are well enough to focus to try and keep our brains flexible by learning new skills like languages and music the brains can help rewire other areas and reduce the amount of resources devoted to pain. This is obviously incredibly difficult with this condition and needs to be ongoing but in my experience it is worth trying. I have a heart condition that causes no problems but when discovered in 2009 it meant all my various strong pain medications were stopped overnight. I had med brain fog before that and slept much too many hours. Now having no medication I suffer very bad pain brain fog that comes in waves through the hours or days. With no meds available only heat, massage and physio it means focusing on improving my brains function in relation to pain management is a helpful and positive way to try and manage, at least in part, the nerve pain where it gets processed in the brain. It is well established that certain psychological conditions/situations can cause the cerebral cortex to temporarily shut down or go off line and the emotional zones of the brain take charge of the logical thought zones. With severe chronic repeated pain the research I have seen shows that normally small things like stress, tiredness even being hungry can trigger overwhelm of the cerebral cortex and make some pain sufferers, including me sometimes, temporarily run on emotional thought instead of higher logical thought as certain brain zones go out of action. This means getting easily grumpy, frustrated, annoyed or upset as a result of the way my brain has been impacted by all those extra pain pathways developing over time making my tolerance to stress and ability to concentrate much less than it was before TN2 simply because brain resources have been taken away and devoted to pain processing. The pain psychologists are clear that it is not my fault when I sometimes have less cognitive function and emotional tolerance, it is simply the way that all brains work. Obviously this is a simplified way of trying to explain things and has still turned out a very long post but I hope it might help someone understand a little about why pain brain fog happens. For me accepting my concentration ans emotional reactions are not all in my control helped, a large part of my suffering is simply the architecture of my brain and the chemicals released there, while at the same time knowing there are some things that I can do to improve my brain flexibility and function by building resilience when I feel able to has meant I feel a little more in control and that has made my stress levels more manageable. I think that is good going especially considering the TN2 pain both causes more stress and causes me to have a decreased tolerance of dealing with stress in my brain. I hope this mostly makes sense to people and might be interesting to someone
I get brain fog more with some drugs than others. I am on Oxcarbazepene now,
Which gives me the least amount, almost none brain fog. Gabapentin was the worst for me. Carbamazopine though very effective but gave me more brain fog.
Dear becsbecs. That’s a fascinating take on the pain brain fog issue. I must admit that I had not thought about these possibilities so far. I always just assumed that the pain makes me grumpy and which might affect what I do or say. I did not realise that my thinking itself could be essentially grumpy. Very interesting indeed. I put that paper on my reading list, many thanks.
Actually you might want to start a standalone discussion post on that cognitive-and-emotion issue?