Hi Mary,
It is typical with Type 1 pain to have triggers - such as eating, talking, brushing your teeth, a light breeze or some such. So, your doctor must have listened to you pretty good.
With Type 1, there is almost always a compression of the nerve whether it shows up an MRI or not, so that is good news if you decide to move forward with the MVD surgery.
Good luck.
Jackie
hi mary, yes it does seem to build momentum and sometimes becomes constant. do your research…i had mvd four months ago and my life is back to normal from about one year ago. it’s truly glorious! of course it’s tn and everyone is different, but i had an episode that lasted 40 minutes and i could feel the lightning every time my heart would beat. my understanding is it tends to get worse…look into mvd, i would certainly do it again if it comes back. don’t be scared, there is help! janet
Hi Mary. Some days I have it constant and some days I don’t. Some times I have it for a couple of hours were it doesn’t stop. Even when it has stopped the big pains I have a severe ache in my face. I am sorry for you pain, and hope that your doctor will help you. You are in my thoughts and prayers
I agree with Gloria, I have only just been diagnosed with TN 12 days ago and I am already on my second medication because the first one didn't work. Get a second and a third and a forth until someone gives you meds to at least try. Different medications work for different people. My thoughts are with you.
Gloria E. said:
I was appalled when I read that "they" said pain meds will not work. That's NOT TRUE!!! "They" don't know what they're talking about!!!
Mary Miller said:Thank you Stef...What pain meds do they give you??? THey have never given me any because they said they will not work.
Jackie I have both symptoms, when it is not jolting it is a constant ache. But the jolts are getting more and more frequent. Any idea's?
Mary Miller said:
Thanks Jackie..then I am positively type 1...appreciate your help
Jackie M said:Hi Mary,
TN Type 1 is characterized by jolting, stabbing, or electrocution-type pains, and Type 2 neuropathic facial pain is better described as constant, dull, burning or boring pain with intermittent sharp stabbing pains. Numbness and tingling may also be present with neuropathic facial pain.
I was diagnosed with TN Type 1 because I thought that an ice-pick was being jabbed into my head, then heated up, then jolts of electricity were introduced to it and radiated out from it. And when I thought it couldn't get any worse, it did. I would have these types of ice-pick pain over and over again, many times an hour, over and over again and my worst bout was 22 hours long.
TN Type 2 or atypical trigemina pain is the dull, burning, aching pain like when all my teeth feel like they need to be root canaled at the same time, or my face feels like I've got a horrible sunburn, but I haven't been out in the sun and the burn is on the inside and the outside at the same time. Or my jaw just aches and I can't figure out why. (For me, it's in that division of the nerve).
I hope this helps to clarify the two types of pain.
Jackie
Hi Barb,
Unfortunately, it is possible to have both Type 1 and atypical at the same time. I would suggest you start a pain journal right away and document how frequently you have each type of pain and how long it lasts. I also would document what meds you're on at the time so when you look back six months from now or some such time, you will have a really good record.
I would keep your neurologist or your g.p. apprised of your levels of the various pain. I give mine copies of my pain journal. It gives him an "instant snapshot" of my life and makes it easier for him to treat me. He seems to appreciate it even though I feel like I'm overwhelming him with paper.
Let me know if I can help in any other way. I'm sorry you're here because you have been diagnosed with TN. Just remember, there are ways to cope with it and some of us that have had it for a long time are pretty good at it!
All my best,
Jackie
i have it constanly you are not alone. my attacks are back to back everyday. i know how you feel. theres no peace and its hard to be postive i’ve had 2 mvd’s and 1 rfa then i had gamma knife i havent got much relief im sorry your in pain hope you feel better
I was like you and had the pain non stop.
It never quit.
I always scratched my head wondering if I had Typical or Atypical
One doctor thought it was more my TMJ problems than my TN problems.
The MRI showed a vessel but not a compression
I had my MVD in August and what they found was the blood vessel had completely encapsulated my Trigeminal Nerve.
After having to disect the nerve off of the blood vessel they found the nerves protective sheathing had completely wore off.
You really dont know whats going on until the surgeon gets in there to see first hand.
Not saying this is what you have but they never really know whats going on until they do the surgery.
Hope this helped.
Rick Smith
whats a pain journal? i keep hearing it
Jackie M said:
Hi Barb,
Unfortunately, it is possible to have both Type 1 and atypical at the same time. I would suggest you start a pain journal right away and document how frequently you have each type of pain and how long it lasts. I also would document what meds you're on at the time so when you look back six months from now or some such time, you will have a really good record.
I would keep your neurologist or your g.p. apprised of your levels of the various pain. I give mine copies of my pain journal. It gives him an "instant snapshot" of my life and makes it easier for him to treat me. He seems to appreciate it even though I feel like I'm overwhelming him with paper.
Let me know if I can help in any other way. I'm sorry you're here because you have been diagnosed with TN. Just remember, there are ways to cope with it and some of us that have had it for a long time are pretty good at it!
All my best,
Jackie
Thanks for all the good replies. I just wish I knew what to do. I have had this for a year and a half…everyday since Oct. The Doc wants to do surgery and I have been approved…but I am scared to death. Yesterday I was going to set the date for it and I chickened out. I just don’t know what to do. Brains surgery is a big deal and I don’t want to end up worse, or DEAD. Right now the pain is horrendous…but only if I try to eat or talk…I guess that is pretty bad. Vanderbilt has a great neurosurgeon, but it is a teaching hospital and when I asked the surgeon if he would be doing the surgery…he said “I will be there”. So that means a student will be doing it??? I just don’t know what to do, but I do know I am miserable now.
Amanda Micaela Cook said:
whats a pain journal? i keep hearing it
Jackie M said:Hi Barb,
Unfortunately, it is possible to have both Type 1 and atypical at the same time. I would suggest you start a pain journal right away and document how frequently you have each type of pain and how long it lasts. I also would document what meds you're on at the time so when you look back six months from now or some such time, you will have a really good record.
I would keep your neurologist or your g.p. apprised of your levels of the various pain. I give mine copies of my pain journal. It gives him an "instant snapshot" of my life and makes it easier for him to treat me. He seems to appreciate it even though I feel like I'm overwhelming him with paper.
Let me know if I can help in any other way. I'm sorry you're here because you have been diagnosed with TN. Just remember, there are ways to cope with it and some of us that have had it for a long time are pretty good at it!
All my best,
Jackie
Hi Mary,
Don't feel bad for "chickening out". I think you need to be comfortable with your decision. And, if the neurosurgeon isn't going to be performing the surgery himself, that does seem like a red flag. You are correct, it is surgery that is very meticulous and we consider it brain surgery. It is a HUGE choice to make and I think you are wise for considering everything before making the decision.
There are more Doctors and more Hospitals than Vanderbuilt that do this surgery, although Vanderbuilt does have an excellent reputation. But, if you are not ready, you are just not ready.
Hang in there and when the time is right, you will know it and you will be able to make your decision.
Jackie
Hi Amanda,
A pain journal can be as simple as a calendar where you write down the frequency and type of pain you experience or as complex as a spiral notebook that you "jounal" your pain in. I personally prefer to journal because my pain takes over my life sometimes. Then, my Doctor also knows whether I am depressed or isolating or angry or insulting to my family. Chronic pain brings out so many other traits that he has to be able to treat. Sometimes, antidepressants are used for chronic pain patients for the obvious reasons, but in our case, some Doctors believe that they work in two ways: One, for the depression of chronic pain and two, in conjunction with our other meds to decrease our pain.
There are some pre-made forms on the internet you can also download that are handy for keeping a pain journal. You can look them up by Googling "pain applet" or "pain journal" and downloading the forms.
I hope this helps.
Jackie
Mine didnt work cause i dont have a compression but im a weird case. you on the other had will probably get relief like so many others dont be afraid just do it yoiu wont regret it. i dont cause i at least i know we tried and that it’s not a vessel so i recomend it.
Mary Miller said:
Thanks for all the good replies. I just wish I knew what to do. I have had this for a year and a half....everyday since Oct. The Doc wants to do surgery and I have been approved..but I am scared to death. Yesterday I was going to set the date for it and I chickened out. I just don't know what to do. Brains surgery is a big deal and I don't want to end up worse, or DEAD. Right now the pain is horrendous..but only if I try to eat or talk...I guess that is pretty bad. Vanderbilt has a great neurosurgeon, but it is a teaching hospital and when I asked the surgeon if he would be doing the surgery...he said "I will be there". So that means a student will be doing it??? I just don't know what to do, but I do know I am miserable now.
Amanda Micaela Cook said:
whats a pain journal? i keep hearing it
Jackie M said:Hi Barb,
Unfortunately, it is possible to have both Type 1 and atypical at the same time. I would suggest you start a pain journal right away and document how frequently you have each type of pain and how long it lasts. I also would document what meds you're on at the time so when you look back six months from now or some such time, you will have a really good record.
I would keep your neurologist or your g.p. apprised of your levels of the various pain. I give mine copies of my pain journal. It gives him an "instant snapshot" of my life and makes it easier for him to treat me. He seems to appreciate it even though I feel like I'm overwhelming him with paper.
Let me know if I can help in any other way. I'm sorry you're here because you have been diagnosed with TN. Just remember, there are ways to cope with it and some of us that have had it for a long time are pretty good at it!
All my best,
Jackie
Jackie thanks for you reply back. What is a pain journal? Do you have any suggestions as to how to help deal with this pain. I know it will not make it go away completely, but some relief would be nice. the only relief I get is the first 5-10 after I wake up and only if I just lay in bed very still. and it is not every day some times the pain wakes me up. my meds causes me to sleep.
Jackie M said:
Hi Barb,
Unfortunately, it is possible to have both Type 1 and atypical at the same time. I would suggest you start a pain journal right away and document how frequently you have each type of pain and how long it lasts. I also would document what meds you're on at the time so when you look back six months from now or some such time, you will have a really good record.
I would keep your neurologist or your g.p. apprised of your levels of the various pain. I give mine copies of my pain journal. It gives him an "instant snapshot" of my life and makes it easier for him to treat me. He seems to appreciate it even though I feel like I'm overwhelming him with paper.
Let me know if I can help in any other way. I'm sorry you're here because you have been diagnosed with TN. Just remember, there are ways to cope with it and some of us that have had it for a long time are pretty good at it!
All my best,
Jackie
Hi Mary, I am Gina. Sorry to hear about your attacks. I find being a mother of 11 children, nine still at home and also a Military Wife, my attacks are just triggered by my normal stress with this ( Demon). Maybe the sell of your house is causing the non-stopping attacks? I have had TN for fours years now. I can say I had months with no relief, just coping the best I can bringing along a clip board, with me alot during my pregnancy to talk to my children or any ones else who knew about my TN. During the time my Husband was deployed as well. Thank God I have adult Children living with me to help on my really rough days.
So I am for sure a TN patient who has had almost six months of no relief of the attacks. I have TN attacks that affect me from the top of my head to my chin. Best of luck on more pain free days.
Gina
Hi Barb,
I am sorry you are having such a bad attack and not getting any relief from the pain. Have you tried a heating pad? Sometimes that helps.
I am also passing along a link for a pain patient's survival guide that was given to me many months ago and I still refer back to it from time to time. Between it and the book "Striking Back", I feel well armed for dealing with this pain.
The link is http://pain-topics.org/pdf/IntractablePainSurvival.pdf and you can download and print it for handy reference. There is also a sample pain journal in it.
Let me know how you keep going on.
Jackie
Is there anybody out there that would think I am absolutely crazy if I opt for the MVD…I would like to know opinions from people on this surgery…I am expecting a call from Vanderbilt today with my MRI results and was wondering if I should just go ahead and get the surgery…what are the chances you could die on the table. I am 61 and in pretty good health. Sorry if I sound dramatic, but I feel pretty dramatic right now…thanks.
When I get it I have it non stop for days. It is always there, most of the time throbbing or stabbing pain, sometimes stronger than other. Without pain meds or sleeping I’ve had it for about 3 weeks non stop. From what I’ve read, it’s different for me. It isn’t caused by wind or talking or touching. It is just always there, deep in my cheek. I thought it was my tooth or root. It has taken almost 2 years to figure out. Same place always. So yes, I have it non stop. I’ve had to take time off work. So I wish you luck. I figure unless you’ve experienced it no one can really relate.