Thanks ellen5! I will purchase a copy! Actually I do say ok to most things and then I find I’m back in the stress factor stuff because I overdo things which results in pain.But let’s get to read your suggested book…!
That really is interesting, Eileen, to have such a direct and obvious correlation between stress and pain. I think you’re maybe a medical phenomenon. Maybe they should study you and see if your sensitivity to stress can’t help us all!
Hi Eileen
You can also download the meditation tapes that go with the book.It is a big book.I recommend to lots of people ,but have only gotten about a third of the way through mine.It is supposed to be a relaxing thing ,so I dont push myself. I do find stress to be a big factor in how often I need to med myself up.I have a disabled adult son ,who I was fortunate to get into assisted living,and when he is whiny it is like a direct pull on the nerve.I would like to do more for him-but odds are I will die first and I dont want the hell that goes with that wished upon anyone.Was at a funeral today for someone who tried to care for his disabled brother who was still living with his mom when she passed.
The disabled brother is still going-but the one who tried so hard has gone.
I understand that stress does play a part for sure. When mine flared up to the point I couldn’t ignore it I was under a lot of stress.
My pain is totally stress-related. When I meet with a client who is “difficult”, I can totally feel things kicking up. In fact, I make sure and numb myself up well before meetings that might be stressful. Or when I argue with my husband, or get really worried about something. My mouth is like a “stress-o-meter”!
On the other hand, when I can lie in bed, relaxing on a weekend morning, no worries, it is totally bearable. I wish I could figure out how to keep that minimal level of discomfort at all times. I could live with that I think.
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All these replies make me wonder what exactly stress is doing to our pain. Is it just making us feel it more because our nerves are on edge, or is it actually physically causing a change? Perhaps increased blood pressure pressing on the nerve over a period of time makes it fire off?
It also makes me wonder if maybe they shouldn’t either be researching the effects of stress on TN, or finding a good tranquiliser for us all!
You are right.I go to a big teaching hospital but there does not seem to be any study going on that I can participate in.
If there are any research students needing a group to test theories they would have a good market with us.
Maybe some of the moderators would have a clue(I would put a question mark but my computer is doing the funny E thing again)
I’ve had TN in and out or remission for 7 years. YES, I have noticed stress as a trigger. Hard to avoid stress, but instead I found I can introduce calm with varying degrees of success. My list at various times includes:
Acupuncture
Valium or Xanax
Cannabis
Deep breathing
Wine At Dinner
CBD Oil Mouth Spray
Transdermal Pain Lotion w/Lidocaine
All these provided some relief and if you know that YOU can control the pain you could put up with a lot more. All these have much less side effects then anti-seizure meds.
Good Luck Michael
Hi Michael
There is no chance of me getting vallium.I have been on the gabapentin so
long-it was the drug of choice for horrible hot flashes.I might try and
decrease it.Went up high but that did not help any more.
Now I have legal weed.I like the oil from Aphria and finally found a dried
product that works from Tilray -sour lemon diesel.
I do have CBD oil so I will try a rub on of that.Where do you get the spray
from?
never heard of it before.I find the tylenol 3 with the baclofen is the
thing that helps the most.I have ketamine cream that helps a bit.
Thank you for your response.I know that now that I am allowed more drugs I
take less of them.Sort of how people with out enough food just binge when
they get it but if they have a steady diet they don’t have the food
insecurity problem.
For me,I have drug insecurity issues.
So I got my blood results back.
my B12 is HIGH so no chance of getting a needle.
My TSH level was low and my doctor has ordered more blood tests.
I asked whether the gabapentin might influence the TSH and my doctor did not think so.
Does anyone have experience with this?
Couldn’t agree more, Ellen. I am actually a very willing guinea pig. I would love someone to do some research and would be more than happy to step up, but I have never even seen a TN study here in the UK, never mind been asked to do one! It’s the classic Big Pharma problem - there simply isn’t enough of us (and therefore enough profit) for any pharmaceutical company to be willing to do a study. And nowadays they are the only people who do medical research.
I can’t speak for Gabapentin, Ellen, but I know for a fact that Carbamazepine can cause both hypothyroidism and falsely high thyroid tests results - take your pick. I had both when I was on Carbamazepine and they went back down after I came off the drug. I’m guessing as it’s the same type of anti-convulsant, that Gabapentin is likely to do the same thing. Your Dr may not know they mess both with your thyroid and with test results so you should mention this to him.
Hi Ellen,
It has been several months for me just only reading here … ( I’m doing fairly well )
Now I’ve a question. Cabamazepine just worked for me . With the higher doses
( + 350 ) it gives me hot flashes ) .
I tried to go with no medicaton, but that was not possible . It always feels like there is an attack waiting to happen . So I’m still on a minimum of 200/day up to 350/day .
My neurologist keeps talking about switching to Gabapentin .
I’m not really waiting for another medication - since the Carbamazepine still does what it is suppossed to do . I started taking it in november last year .
When I read about Gabapentine it does not really sound like I want to switch to it .
Am I correct ? What would be a good reason to switch to Gabapentine ( or not to do so ? )
I totally with the fact that stress is a trigger for TN ! Ialso can feel the effect of stress on TN .
I’m butting in here, Omieke, but I did take both drugs and can tell you Gabapentin is kinder than Carbamazepine when it comes to side effects, but it’s not considered as effective for pain control. However, I never took it by itself so I don’t know how true that is. Ellen may be able to advise. I notice you are on a low dose so quite possibly Gabapentin would do for you nicely. If so, I would recommend the change because Carbamazepine is very harsh, with very bad side effects, especially if used long-term.
Thank you very much for your quick response .
So it’s time to listen to the neurologist . It is very much like I’m afraid of giving up my security blanket . And I was under the impression that Gabapentine had such a long list of side effects ( more than Carbamazepine ??? )
thans
Hi both of you.And the message that says for me to shut up.(or that is my interpretation of the thing that comes on and asks “am I sure I want to post?”(Moderators-if I did not want to post -I would not.I would consider it rude to leave the middle of a conversation )
Electric face lady-thanks-I had that feeling but my doctor said that gabapentin should not mess with the thyroid results-let us wait and see.
And Omieke-Electric face lady has some good knowledge.I was only on carbamazepine for a week before the side effects were bad for me.
Gabapentin is now being used for all sorts of stuff.My gynecologist had me on it for hot flashes.Someone said it is now offered to women post cesarean section.So it seems to be a new sweetheart drug that can be offered for pain management.My back pain specialist would have put me on it ,too,if I was not on it already for hot flashes.
I am on a generic version that seems to work at least as well as the name brand-so don’t spend the BIG bucks on the name brand if you decide to switch.
I have been on it for about 10 years now-a long time -might be time to see if stopping slowly will make a difference.My pain levels fluctuate so wildly.
It is so hard to tell if something works or doesn’t.
So Geo, are you taking these supplements? I have tried them all. Vitamin B complex heals nerve endings, and I’ve found high dose vit D heals the central nervous system (reduces pain) and magnesium helps nerve pain and the spasms that often come with them. When I took the inositol, I guess I am an alien because I reacted so badly, it was like I was taking chemotherapy. Lost my hair, was constantly sick and weak, could not even care for myself properly. I guess everyone reacts to different things, so we keep searching for our own magic combination. I’m like Ellen, I can barely eat, so looking at lists of food or trying to plan a menu just makes me sick. I need supplements because I can’t eat enough.
TN has def effected my stress levels! Besides having a failed mvd, still on medication, and recently getting nerve pains on opposite side of face I can def say it’s tired me into a great big ball of stress. Especially having a high stress job on top of it. Recently I broke down to my GP about my anxiety levels and he prescribed me this Xanax that you melt on your tongue when you feel the panic feeling set in. I truly from the bottom of my heart feel for all of you and the battle of this crapola.
You’re not wrong, Nanooo. I’ve been really surprised by how direct the connection is between my stress levels and my pain levels. I recently had to get up much earlier than normal (my body hates that) and I was expecting several repair men which always stresses me out. The combination of the two things had me getting zaps all day for the slightest thing, including looking up at the ceiling (!) and going into a vestibule that was maybe 2 degrees cooler, tops, than the room I was in. It was incredibly revealing, I thought.
I really feel this is an area they should look into with TN research. I had even been thinking of doing a poll on it, it is so obvious - at least to me. I’d be really curious to know how many other TN sufferers have noticed it. It does make you wonder if TN sufferers are more neurotic and anxious than ‘normal’ people and if that might actually even be causing, or at least triggering, the condition somehow.
I have been dealing with TN over 13 years and sometimes stress can make the pain worse… but other times when I have had some very stressful situations - divorce - breast cancer, there is no affect!
So I personally have not found a relationship with Stress levels, but saying that, everyone is different. Regards