Pain so bad it made me cry

Hi, all,

I don't get here too often, but even though it is 2 a.m. Central time, I had to just tell SOMEBODY who would understand. I sure hope my luck hasn't run out. Usually I function relatively pain free, with tramadol nightly controlling the pain very well. But tonight - oh, tonight was awful.

I woke up from an unexpected nap and had to get up and feed the dogs. I don't know what provoked this, but there was sudden, severe lancinating pain like I had never had before. Usually if I open my eyes wide and just wait the pain dials down right away. This time it didn't.

This time the pain was like a twisting knife at the end of a TASER and was the worst I had ever had, and nothing eased it. It just kept on and on and on, and I thought there is no way I can live with this if it does not ease. Finally it diminished and I had to cry from the fear that this might be my life from now on.

I got up, fed the dogs (I had slept right through their regular routine), let them out, and did other things I should have done. I had a very large meal earlier in the day with a friend, so I wasn't very hungry, but I got a slice of bread to eat along with the evening medicines I take.

Then it happened again when I bit down on the soft bread. Of course I couldn't move, it hurt so bad. Again nothing would ease it. Again I had to cry when it finally diminished, which took what seemed to be an eternity.

I can't blow my nose because I can't touch that part of my face. I just have to let the mucus run out until I can catch it with the gentle touch of a lotion-enhanced tissue. I feel so gross, so dirty, so hopeless. What if pain that bad should happen while I am driving? What if that pain should paralyze me when I am in public? Usually I can associate the onset of pain with something I did, like forgetting and rubbing lotion on that side of my face or my head being bounced while I ride the tractor across the pasture. But this time there is no known provocation, it just happened.

I took a tramadol and a dose of Tegretol. The pain hasn't happened again this evening, but it feels like the pain is lurking there, ready to break out at any moment. I am so afraid.

I feel really unworthy complaining about this, because I know some of you go through this all day long every day and get to your wits' end with it, especially when no medicines work for you. It was just so horrible today, though, so horrible.

XOXOXOXOXOXO, Pat from Missouri

I'm sorry you are in so much pain. You are never alone with this. I have been in that place many times. It is always late at night that is the worst. I think because there are no distractions. It can be very isolating.

Pat, I am so sorry you are in so much pain! Please DO NOT feel unworthy about complaining about how you feel. I am new here but I think that is exactly why we are all here - to understand and empathize with what you are going through. Maybe even offer some suggestions.

You said you didn't know what triggered the episode. I'm not sure but I see you are in Missouri and depending on where you are it may you in the path of the current severe weather system. TN certainly changes over time. Could it be possible that you are becoming sensitive to changes the barometric pressure? For me, this is a huge problem and winter weather is awful for me. Try applying heat to the area that hurts if you can.

I have had this disease for over 30 years and my pain is constant now, but with medication it is somewhat under control. It seems as if I am always looking for new strategies to deal with things and I am still learning, which is why I joined this group.

But never, never, feel unworthy for needing help or complaining when you are in pain.

Cathy in MD

Also, of course, make sure to bring this up to your doctor at your next visit or if you feel like you need to, make an appointment to see the doctor now to discuss it.

Dear Cathy,

That was the first thing I did before I sat down and posted to TN. God bless 'im, my neurologist (I have MS) gave me e-mail access to him, so I sent him a message detailing this different episode, and I asked about killing the nerve or taking some second-line medication.
I have been thinking what you mentioned, about the barometric pressure or other weather phenomena being a stimulus for the episodes. Usually the worst times are in February. I figured that there must be a reason for that since that is usually the time of year with the coldest and most breezes. Also, I've been considering the possibility that mechanical stimulation might be a factor this time as a couple of weekends ago I went to a firing range to qualify for my concealed carry weapons permit, and that exercise included a lot of forceful stress on the upper body muscles and a lot of putting that part of my face in position to take a shot. I was not hit there, and I did not have any attacks there until last night, but who knows the latency of a particular stimulus, I certainly don't.My eye has been really itchy for the past couple of weeks, though, and the TN woke me up one morning about a week ago when I was scratching my eye in my sleep hard enough to cause TN pain.

Thank you, Jane, for your considerate reply also. Yes, late at night HAS always been the worst.

I had two more episodes this morning; all I was doing was sitting on the sofa, petting one of the dogs and telling him he is a good boy. The pain was SO awful, much, much worse than any episodes of months before. All I could do is put my hand over that side of my face, and I do believe the warmth of my hand and the blocking of the light over my eye eased the pain.



Cathy in MD said:

Also, of course, make sure to bring this up to your doctor at your next visit or if you feel like you need to, make an appointment to see the doctor now to discuss it.

Hi Pat, I’m sorry to read of your pain increase…unfortunately TN pain can exacerbate without any trigger at times…so maddening and excruciating.

My TN is now so sensitive that any form of exercise/ elevation in heart rate can set it off, as a passenger in the car bumps/potholes in the road set it off, noise and bright flashing lights also can trigger my TN.
I have so many triggers I’ve lost count and truth be told sometimes I can find no reason what so ever…

I hope you’re feeling better and the intensity has diminished.
I know the fear is overwhelming at times.
What has really helped me with the fear, is consciously living in the moment as much as I can and not looking/worrying too far ahead. Anytime the fear creeps in, I do some slow breathing exercises to relax my mind and body and release the stress in my body.
Huge (( hugs )) Mimi

Beautifully said Mimi - a good thing for all of us to work toward practicing. I know that sometimes, the pain can be so intense that I can't think of anything but this could be something to work toward. I'm learning so much here. I hope you are feeling better too Pat!

I can truly understand how scary such sudden pain was. Keep up the Tegretol as it need to build up in your system. I pray you will have the strength to get past the fear. Take care my friend; you are not alone.

I found the change in barometric pressure greatly affects my tn. This has been going on a bit over a year and I have had tn for 4 years. Knowing why I hurt more on bad weather days helps as I know it just has to be a quiet day and I take a long nap if possible. My neurologist was the one who brought it to my attention.

You mentioned exercise and the shooting range and I found that when I was in physical therapy the girls kept having me do upper body stretches and pull downs, etc. which caused flare ups in my tn2.

Mimi said it so well. We really just have to learn to take one day at a time. Something that helped me was reading the Spoon Theory.

Hi Pat, I know how you feel I was at my worship meeting and it hit me like you describe and like you said it's like blinding and I had to be helped out to the car and driven home. I was embarrassed at having interrupted the meeting everyone starting why are you holding your face crying terrible time. And like yours for no reason it's just there! Be tough though> Good luck.

Dear Mimi, Patty, Shadow, Wheels, Cathy and Jane too,

Thanks so much for writing. The time is 2:20 p.m. Central time, and I was doing OK from the time I woke up until now. I called my clinic (I get my care through the VA women's clinic in St Louis) to see if I could take another Tegretol as my prescription says 200 mg once at bedtime. The other two times I have needed Tegretol this dose seemed to be enough, but not this time. It's been intensifying as the minutes go by. They have to call me back because my doctor retired last October and they have to find someone to ask right now until I get another doctor. It got bad, though, so I couldn't wait for the callback and I went ahead and took another 200 mg Tegretol tablet hoping it will help. It's been over 12 hours since I took the last one. Anyway, I don't think it will hurt me, and I have to do SOMETHING to try to help.

Of course I decided to stop in here to see what y'all had to say. Mimi, I'm glad to hear about the breathing, don't you know I am sitting here doing that right now to try to ease the tension the pain has produced. I am so glad you suggested it because I was getting wound up really tight with fear of the next stabbing.

Patty, I was not aware that I need to keep an elevated blood level of the Tegretol. I thought it went in, did its work on the brain, and then I was better. This is probably why I am having these random attacks as the day goes by, I am not keeping the Tegretol in my blood. This IS going to be hard to do, though, since for whatever reason Tegretol makes it difficult for me to walk. Not hard to take the Tegretol, as I would do anything to relieve the pain, just hard to get around during the day.

Wheels, that is awful that it hit you during worship. I am glad there was someone to help you out. I go to weight loss club meetings here and it got me one time during that; only two people saw it, though, and it did go away, so I dodged that.

UPDATE: While I was typing this the clinic called me back to tell me to go ahead and take the additional 200 mg Tegretol. I'm glad its OK.

I am feeling a little dizzy from the extra medicine, I think, and my face feels achy, but I am not having any stabbing. My eye is still wet from crying a little. Which makes me wonder, maybe it isn't all crying, maybe the TN is making my eye water some, too?

Thank you all for caring enough to respond. I feel less afraid when I read what you have to say.

Hi again, I am glad you had at least a bit of relief for a while. Teg needs to be taken regularily; it is not a pain reliver as it works on the nerves and stops them from firing so often. It is a med used to treat epilipsy.

I take 400mg CR (slow release) in the morning and again 12 hours later. The slow release reduces the highs and lows from the drug and I find I get better pain relief. Some folks take higher dose and don’t have trouble with side effects and others, like me, struggle with them. I would personally take the side effects to the crushing pain.

Be sure to check with a doctor about changing or upping your meds. I hope you continue to have a break from the pain. Hugs

I am so sorry. I know that fear. I fought for seven years to get a law degree. I did this as a single mom. And the month before I was to take the bar I experienced my first attack. The fear was crushing. I had to withdraw from the exam and for nine months my life was on hold. I went into remission. Passed the bar, established a successful practice and now I came out of remission. The fear during remission faded until it was gone. Now I live in constant fear I will lose everything. I try to be present in the moment. I try to be grateful and find joy. But it is hard.

It is hard when you can not go to church because the vibration of the worship music causes pain. You can not sing anymore because the vibration hurts. When talking causes pain and your job depends upon talking.

I wish I had something to say that fixes the fear. I get through it by focusing on the positive.

My pain is the worst at night. I cycle. I usually am functional until 3:00 when the pain begins and gets worse. I live for the days I have no pain. I do have them.

Hang in there. We will get through this.

It has already been said , but the recent storm front has caused me to also have 2 of the worst episodes I have had since I have been on the Tegretol . I could see the pressure wave approaching from the south , and then when the center of the 'low' passed over . The pain went right thru and seemingly around the meds. Sometimes the weather is not a factor , but I always look at my home barometer when it strikes hard and there is almost always a correlation . When the pain gets to that point my eye starts to pour out tears . I call it a '10' .

It has been a tough week - My father has a triple bypass on Thurs - My mother is in the hospital with a minor heart attack-My uncle Jerry passed away last week - I have to drive to Battle Creek Thurs for an MRI - It is hard to remain calm and not let the stresses get to me.

It is nice to have a place to share with someone who understands.

I Hope things level off for you ! The fear of these kinds of attacks can cause stress as well .

VeteranInPain,

You are truly dealing with a lot! I hope that having the understanding of others really does help. I'm so sorry to hear that in midst of everything you have had to endure two horrible episodes of pain. You brought up the barometric pressure and said that you have a home barometer. Where does a person get one and learn how to use it? I'm honestly sorry for even asking during this time when you have so much going on so if you are unable to answer, I totally understand. You are in my thoughts.

Cathy in MD

VeteranInPain said:

It has already been said , but the recent storm front has caused me to also have 2 of the worst episodes I have had since I have been on the Tegretol . I could see the pressure wave approaching from the south , and then when the center of the 'low' passed over . The pain went right thru and seemingly around the meds. Sometimes the weather is not a factor , but I always look at my home barometer when it strikes hard and there is almost always a correlation . When the pain gets to that point my eye starts to pour out tears . I call it a '10' .

It has been a tough week - My father has a triple bypass on Thurs - My mother is in the hospital with a minor heart attack-My uncle Jerry passed away last week - I have to drive to Battle Creek Thurs for an MRI - It is hard to remain calm and not let the stresses get to me.

It is nice to have a place to share with someone who understands.

I Hope things level off for you ! The fear of these kinds of attacks can cause stress as well .

Dear Veteran,

You might have seen by my paragraphs that I, too, am a veteran. I feel so bad for you that all that turmoil in your life happened right in the middle of bad pain, or vice versa. Are you service connected for the TN? I am. It really is hard to remain calm and not let the stresses get to you and have to deal with the pain, too. I am finding out that I cannot do it. The pain has finally gotten so bad that I cannot deal with it. Fortunately the medicine that is being offered to me brings the pain close enough to zero that I can do a few other things. Unfortunately I am having to deal with the medication side effects that make it nearly impossible for me to walk. That's OK though, as long as that pain is not stabbing me. Anything is OK as long as I don't have that pain.

Dear Lisa,

Up until this most recent attack I, too, was cycling, and had months, nearly a year, of remission each time. I could be confident that when the pain went away it was gone. Not this time. Even though I have enough Tegretol and tramadol in me to stop the attacks, I can feel the heaviness in the middle of my face and a sizzle every now and then like insulation has dropped off of a wire. I know that if I let the medication get low in my blood that the pain will start beating me in the face, so for the past 24 hours I have stayed drugged up. I am saying that to say to you I can understand what you would have had to go through to get your law degree if this had been attacking you, and I am so glad that you were given enough of a pain-free time to finish the degree and start being a lawyer. I can't do anything right now except a small chore here and a small chore there.

Vet, you said "The fear of these kinds of attacks can cause stress as well." You are SO right. I could have gone to the park and walked today but I was so afraid of being away from home and having an attack. That IS stressful, not feeling free to do what I usually do.

Thank you all again for writing here and even just for reading all of this. XOXOXOXO Pat

it's always heart breaking to hear everyone's negative experiences with TN ... i too have felt the pain described ... i can't cry even though i want to ... it makes the pain worse ... this is the only place i feel like i can come to and share what is going on ... people who do not have this don't seem to understand what it is like ... at least the people i associate with ... at times i don't think my spouse "gets it" ... everybody has their own crosses to bare and i don't want to be the person who thinks her problems are worse than any other person's ... as i stated earlier, i (we) have each other here ... i am greatful for finding this group ... you have us Pat ... here is hope for pain free days for you and the rest of us

My problems may or may not be connected to an accident I had in the Navy , I am going through the VA because I cannot afford to go to non-caring civilian Docs anymore that only care about $$ .

Here is a little story that should have told me I was in the wrong place.

(I was trying to solve these mysterious pains - So I walk into a local ENT office to see If I could get an appt. to get some answers . I ask the clerk at the desk if they could maybe schedule me for a consultation or examination to discus a problem I am having , Her first question was not "what is the problem?" but she asks "Do you have insurance?" )

OK so a one hour exam , A CTscan , and a sorry there is nothing I can do , your sinuses are clear . Left me nearly $2,000 in debt and no further along in resolving this problem.

I know now that this a typical scenario in TN cases.

The MRI went well and I really hope that it shows some explanation for these problems .The results should go to my VA Dr by the middle of next week and I should hear from him for an Appt.

My Father survived his by-pass and is recovering well .

My Mother is home now and seemingly getting stronger .

I took some of my vacation days from work this week to make sure Mom has someone close to keep an eye on her.

I have to get back Thursday.

Been getting periodic episodes of the pain , ranging less than a '5' this week and mostly when I try to lay down to sleep .

A funny problem that started the pain last night , a burning in my left nostril that went up towards my left eye then back to my temple - That is new... I could feel that it was travelling on the maxillary branch of the nerves .

How I wish I didn't have to deal with this . But my way of thinking is that there is something I need to learn from this , something that I must take away from this experience or I will not be able to move on.

My worst day of pain is better than 'nothing at all' .

You are right about the heartbreak, Bubblegum. Every time I come here I have to stop and realize that everyone else is here because of this terrible pain.

►You said, "people who do not have this don't seem to understand what it is like". That is so true, and having been one of those people for most of my life, I can say we must not fault them. Even though I am now one of the group, until now even I did not completely understand because I always had quick and long-lasting remissions after a week's treatment. THIS time I understand because I had that episode last week that started this thread, and that episode did not go away for a long time. THIS episode is the one that made me know I could not live with it if it did not slack off. THIS is the episode that made me understand what many of the people here go through 24/7/365. You also mentioned you are thankful for finding this group. SO AM I, VERY THANKFUL. Otherwise I would be in an even more desperate place knowing that nobody understands what I am going through. I would feel so all alone and hopeless. I thank God for Red and for all of you, not thankful that you are hurting, but thankful that even in your pain you would reach out for comfort and to comfort.

Bubblegum said:

it's always heart breaking to hear everyone's negative experiences with TN ... i too have felt the pain described ... i can't cry even though i want to ... it makes the pain worse ... this is the only place i feel like i can come to and share what is going on ... people who do not have this don't seem to understand what it is like ... at least the people i associate with ... at times i don't think my spouse "gets it" ... everybody has their own crosses to bare and i don't want to be the person who thinks her problems are worse than any other person's ... as i stated earlier, i (we) have each other here ... i am greatful for finding this group ... you have us Pat ... here is hope for pain free days for you and the rest of us

Cathy, most of the time Lowe's has them in the garden department (I'm assuming you're in the US). There are analog ones and there are ones built in to digital thermometers. They are definitely in those digital weather machines that do everything, give you the outdoor and indoor temperature, the humidity, the time, and other things I can't think of.

Cathy in MD said:

VeteranInPain,

You are truly dealing with a lot! I hope that having the understanding of others really does help. I'm so sorry to hear that in midst of everything you have had to endure two horrible episodes of pain. You brought up the barometric pressure and said that you have a home barometer. Where does a person get one and learn how to use it? I'm honestly sorry for even asking during this time when you have so much going on so if you are unable to answer, I totally understand. You are in my thoughts.

Cathy in MD

VeteranInPain said:

It has already been said , but the recent storm front has caused me to also have 2 of the worst episodes I have had since I have been on the Tegretol . I could see the pressure wave approaching from the south , and then when the center of the 'low' passed over . The pain went right thru and seemingly around the meds. Sometimes the weather is not a factor , but I always look at my home barometer when it strikes hard and there is almost always a correlation . When the pain gets to that point my eye starts to pour out tears . I call it a '10' .

It has been a tough week - My father has a triple bypass on Thurs - My mother is in the hospital with a minor heart attack-My uncle Jerry passed away last week - I have to drive to Battle Creek Thurs for an MRI - It is hard to remain calm and not let the stresses get to me.

It is nice to have a place to share with someone who understands.

I Hope things level off for you ! The fear of these kinds of attacks can cause stress as well .