What do you do for breakthrough pain?

General General TN & GPN (Old Site)
21

Momof3: Quick question: In your original post you wrote that your doctor suggested you try to take Imitrex (your migraine medication) for your severe TN pain episodes. Did I get that right?

If so, I'd be very careful. I suffer from TN, ATN and chronic migraines. As far as I've understood from my neurologists, that might not be a very good idea because:

1) Your migraines can become chronic due to rebound headaches from "overuse" of the Imitrex. I say "overuse" because in the migraine world overuse can be using your medicine more than 3 times in a week versus in the normal pain world overuse means taking Tylenol with Codeine every 4 hrs every single day. (These are just numbers I'm using as an example. Actual doses vary with different patients.)

2) Imitrex works as a vasoconstrictor to help certain migraines. When you look up information on it, you find: "Imitrex should not be used to treat a common tension headache, a headache that causes loss of movement on one side of your body, or any headache that seems to be different from your usual migraine headaches. Use this medication only if your condition has been confirmed by a doctor as migraine headaches." (drugs.com)

I would really double check with your doctor about that. Like everyone has posted here, there are other options. We might not always like the side effects but they help. When I have to choose grogginess over pain, I'll take the grogginess. But it sounds like you have a doctor that is willing to work with you, and that is amazing...and can be rare. I hope you find something that works for you. For me it's been a mix of surgery (I had my MVD done 11 months ago) and medication (Tegretol and Topomax).

22

ihold-yes, the dr. said to use the imitrex as the rescue med. I guess that was preferred by her over the hydrocodone. I am hesitant to use the imitrex so much either. Before this year, I took one or two a year for migraines. Now I pop 2-3 a week. I understand the overuse of pain killers because I did the same with OTC tylenol, excedrine, advil to the point I have chronic gastritis/ GERD/stomach ulcer. Oddly, Inever know that the TN was what was causing me to take the meds. Once I got on the gabapentin, I stopped cold turkey with the OTC pain meds because I realized they weren’t helping. Tought ten days, but I did it. I am just hoping that I don’t need the imitrex like I used the other stuff. Hoepfully lidocaine will work. Thanks for the advice. Totally makes sense.

23

Well, I picked up the lidocaine today. My dr. called the pharmacist and found out that there was a lidocaine 5% ointment. The jelly is a 2% lidocaine. There is something called emla that is 2.5% one anesthetic (I can’t remember the names) and 2.5% another one. The lidoderm is a 5% patch that has a name brand and a generic, but still very expensive. I hope I can do a few days without having to test out if it works or not for me. But I will post again when I use it. Thanks everyone.

24

Well, unfortunately, I had to use the lidocaine ointment yesterday. Even worse, it didn't work for me. I am glad there are people who benefit from it. I wish I were one of them. Quick topical relief would have been wonderful. Luckily, yesterday's episode wasn't too bad though and it subsided after the next dose of gabapentin went into effect.

25

So sorry to hear that Momof3, at least you tried and now you know!

I called my Dr's for it and as I thought I have to go in, but I also called my dentist who is in his 30's and is up on these things and turns out he has never heard of it. Are you guys in the States? Maybe it's not in Canada??

I came across some notes I made a few months back and it says that increased vit. B complex and Magnesium can help.

Also to remover stressor's (except kids,lol) ie) Coffee (I have just cut back only), pop, tobacco (I'm still trying to cut back), alcohol, etc.

I have Ativan (mild sedative) on hand and I had just a bit of it yesterday and it really helped. It helps me to relax, can't use it too often though.

Wishing you well....

Cheryl

Momof3 said:

Well, unfortunately, I had to use the lidocaine ointment yesterday. Even worse, it didn't work for me. I am glad there are people who benefit from it. I wish I were one of them. Quick topical relief would have been wonderful. Luckily, yesterday's episode wasn't too bad though and it subsided after the next dose of gabapentin went into effect.

26

Cheryl- I am in Texas! Yes, I'm glad I got prescription, even if it didn't work. I will still give a try a few more times before I make up my mind. But maybe where my pain is, it is deeper and the topical just couldn't penetrate deeply enough. I have read that about coffee/caffeine, but I have found that low caffeine can make mine worse. For a while, I cut down the soda intake dramatically, but then the coffee consumption increased. I guess I couldn't kick the habit. Yes, stress is a tough trigger that is almost impossible to remove. But I have found that if I feel up to it and keep the family busy on the weekends, it makes it easier. Work has not been too tough so is not usually a trigger.

My TMJ IS the cause of my TN. I have severe degenerative joints on the left more than the right, and thus my TN is way worse on the left than the right. I always thought that the TMJ was the pain I was having until my GP told me it was TN and then I read up on it and it made complete sense to me.

27

Hi again, I just talked to the Pharmacist and he says they do have it, both gel and patches and he's going to check for me to see if my coverage will cover it. I had to call him back anyways because they were working on setting me up to have my prescriptions delivered for free especially over the winter, I had transferred them all to a drugstore closer to me, so that worked out well!! I should have just asked him first, he also says that because it's nerve pain it won't work as well, but it seems we have some who it works on, so if I'm covered I'll try it!

You never know it might work another time for you. That would be nice! Maybe try it when the pain isn't "sharp"?

People who have had to give up caffeine say that they get bad headaches so that could be why you get worse, I have never tried to give it up because I just love my coffee in the morning soooooooo much!!!

Another fellow TMJ sufferer.....I know from experience to keep that at bay as much as possible so it won't trigger the TN.

Both of them came on after the dentist, the TMJ was a molar pulled, the TN was after a bridge was put in. The bridge feels like it puts pressure on my sinuses too! I wonder if I could get it out?? The only trouble with that is how much would that hurt? and if the TN has been activated can it be unactivated in that way??

What an ordeal! I'm waiting for a TMJ pain clinic appointment now as well, the dentist is referring me!

I remember the days of dealing with my 2 children when the TMJ was bad, it was horrible!!!!!

I have Osteoarthritis in my neck down to my lower back, which is also a degenerative disease/arthritis and I also notice that when my neck is sore it'll trigger either one. Geesh!

How old are you kids?

At least your work doesn't cause triggers! That's awesome!

Before I sold my car 5 months ago, even driving sometimes would trigger the TMJ and then I'd really be fretting!

Take care,

Cheryl



Momof3 said:

Cheryl- I am in Texas! Yes, I'm glad I got prescription, even if it didn't work. I will still give a try a few more times before I make up my mind. But maybe where my pain is, it is deeper and the topical just couldn't penetrate deeply enough. I have read that about coffee/caffeine, but I have found that low caffeine can make mine worse. For a while, I cut down the soda intake dramatically, but then the coffee consumption increased. I guess I couldn't kick the habit. Yes, stress is a tough trigger that is almost impossible to remove. But I have found that if I feel up to it and keep the family busy on the weekends, it makes it easier. Work has not been too tough so is not usually a trigger.

My TMJ IS the cause of my TN. I have severe degenerative joints on the left more than the right, and thus my TN is way worse on the left than the right. I always thought that the TMJ was the pain I was having until my GP told me it was TN and then I read up on it and it made complete sense to me.

28

So I tried the lidocaine again. I think to some degree it worked. It does seem to work better on the non-stabbing pain. I had a fall festival tonight with the kids for 2 hours. It was challenging to keep up the kids. I have an 8yo beautiful daughter and 3.5yo twin boys. My daughter is only tough because she wants some of the attention the twins get, even when it is negative. The boys are just rambuncious active crazy boys. They are the sweetest and when they are good, they are just the cutest angels. But when they aren’t, it drives me crazy, them crazy, and my TN crazy. So we had a tought time getting into the party for the kids, but once we were they everyone had the best time in a long time. I even forgot about TN for a while. But when we left, were driving home, and winding down, the pain started in the left temple, down the side of the face and around to the back part of the ear. A pressure and thumping, almost pulsating moderate pain. I used some of the ointment and then the next few minutes to an hour, most of that is gone and I have just the level 2 out of 10 pain that the gabapentin usually leaves me.



My TMJ has been an ordeal to handle the last 2 years, but when it flares up, I go to a soft diet, a course of steroids, and muscle relaxers and typically it is calmed down in a month or so. For a year, I followed a TMJ forum and read a lot, but not a lot clicked. When they diagnosed the TN and I got on here, everything started to make sense and I feel the comradere and understanding that I couldn’t find even from my own family. I finally learned that the TMJ causes the lack of jaw opeing and soreness in the immediate area. However, the peripheral pain that even radiates to the teeth are the TN acting up. I have the constant pressure in my cheek around two certain teeth. Before the diagnoses, I went to a dentist. I thought, gosh did I have a horrible tooth teeth that needed a root canal somehow? The dentist did some xrays and said it was a small cavity, but ok, lets fill it and see if that makes it go away. My jaw locked during the filling and I cried for 45 minutes while he said he has to finish and he hated seeing me in pain. Then he sent me to an oral surgeon for TMJ who said he didnot want to operate because he couldn’t do anything for the degeneration. Basically said too bad, nothing I can do. Live with the pain. Some how it subsided after about two months. I had 17 months of nothing. Then the constant pressure pain turned stabbing also. I finally went in to my gp (in tears) when she diagnosed the TN and got me on my path to some recovery. I found this site and it is a Godsend. It gives me so much information and support.



Sorry, I am rambling. Thanks for reading my story. I guess I came back to say, for me, the lidocaine ointment worked today for the mild/moderate pain. So to me that is a win. I will still search for help with the stabbing pain, but any relief is good. I wonder why Canada has the gel and the US seems to be the ointment. I think the gel might even work better because it is not so thick.



Cheryl-I hope this winter is kinder to you than the past. I hope I never have mother nature as a trigger. I don’t know how I would handle that.

29

For those of you with ATN if you haven't already you may want to look into prolotherapy treatments. My sister started last November and was able to get off her meds by Feb. She was on 7 all together I believe. She went from being completely non functioning (not being able to get out of bed all day every day) and now she's back to her soccer mom schedule. It's really been a miracle. She didn't want to take any chances with brain surgeries or nerve injections in her face. Risking paralysis and numbness wasn't an option and the prolotherapy has changed her life. I was just diagnosed with TN and ATN. My ATN isn't as severe as hers.....yet but I plan to start prolotherapy treatments as soon as I have my MRI results. The doctors who adminster them say the sooner you have them done the least amount of injections you will need. Good luck everyone and I truly hope you find some relief. Peace and Love!!

30

I'm glad that if finally worked for you. Now I know I can use my lidocaine inside my mouth. I have two teeth that feel as if the pain comes from them and I put it on my gums and around the teeth. Contact your pharmacist and see if you can use it in your mouth. I don't what part of the country you live in, but if it's getting cold. ALWAYS carry a warm scarf or two. My face feels like it's on fire if I go into the garage during the winter. And I'd carry the lidocaine as well. Some people wear face masks and I may get one. It kind of makes you feel like you're going to rob a place but it keeps your face warm. My TN is also triggered by changes in air pressure. This summer we had so many storms I used the lidocain nearly everyday as well as increasing my meds. What you are doing is outfitting your arsenal for a possible battle. LOL. Remember there are also meds that help in conjuction with the TN meds. I take a combination of Nortriptyline, klonopin, tramadol and of coarse the topical lidocaine. Sorry you have to join our club. But hopefully we can help you build up your knowledge of this terrible illness.

Momof3 said:

So I tried the lidocaine again. I think to some degree it worked. It does seem to work better on the non-stabbing pain. I had a fall festival tonight with the kids for 2 hours. It was challenging to keep up the kids. I have an 8yo beautiful daughter and 3.5yo twin boys. My daughter is only tough because she wants some of the attention the twins get, even when it is negative. The boys are just rambuncious active crazy boys. They are the sweetest and when they are good, they are just the cutest angels. But when they aren't, it drives me crazy, them crazy, and my TN crazy. So we had a tought time getting into the party for the kids, but once we were they everyone had the best time in a long time. I even forgot about TN for a while. But when we left, were driving home, and winding down, the pain started in the left temple, down the side of the face and around to the back part of the ear. A pressure and thumping, almost pulsating moderate pain. I used some of the ointment and then the next few minutes to an hour, most of that is gone and I have just the level 2 out of 10 pain that the gabapentin usually leaves me.

My TMJ has been an ordeal to handle the last 2 years, but when it flares up, I go to a soft diet, a course of steroids, and muscle relaxers and typically it is calmed down in a month or so. For a year, I followed a TMJ forum and read a lot, but not a lot clicked. When they diagnosed the TN and I got on here, everything started to make sense and I feel the comradere and understanding that I couldn't find even from my own family. I finally learned that the TMJ causes the lack of jaw opeing and soreness in the immediate area. However, the peripheral pain that even radiates to the teeth are the TN acting up. I have the constant pressure in my cheek around two certain teeth. Before the diagnoses, I went to a dentist. I thought, gosh did I have a horrible tooth teeth that needed a root canal somehow? The dentist did some xrays and said it was a small cavity, but ok, lets fill it and see if that makes it go away. My jaw locked during the filling and I cried for 45 minutes while he said he has to finish and he hated seeing me in pain. Then he sent me to an oral surgeon for TMJ who said he didnot want to operate because he couldn't do anything for the degeneration. Basically said too bad, nothing I can do. Live with the pain. Some how it subsided after about two months. I had 17 months of nothing. Then the constant pressure pain turned stabbing also. I finally went in to my gp (in tears) when she diagnosed the TN and got me on my path to some recovery. I found this site and it is a Godsend. It gives me so much information and support.

Sorry, I am rambling. Thanks for reading my story. I guess I came back to say, for me, the lidocaine ointment worked today for the mild/moderate pain. So to me that is a win. I will still search for help with the stabbing pain, but any relief is good. I wonder why Canada has the gel and the US seems to be the ointment. I think the gel might even work better because it is not so thick.

Cheryl-I hope this winter is kinder to you than the past. I hope I never have mother nature as a trigger. I don't know how I would handle that.
31

Thanks for sharing Momof3, it's so incredible to hear someone else's story. Personally I think "rambling" can be very therapeutic! So sorry to hear about the dentist experience, makes me cringe. I've had a few horror stories too. This facial pain can be tricky. I was noticing that my bite seemed off and eating was becoming harder and I thought it was either the TMJ or the TN until a filling fell out and right away I felt relief in my jaw/bite but I also had a broken molar and had to wait 2 1/2 months to have it pulled under iv sedation at an Oral Surgeon who was wonderful. It's been 3 weeks now. I have one or two cavities that I should get done but I fear the dentist sooooo much. I went the opposite and I never imagined that I had a bad tooth.

Twin boys, yikes!!! That's a huge handful.

My son was a handful and I couldn't imagine having 2 of him, hahaha, one was enough. My Mom used to say "the squeaky wheel gets the oil" and it's so true I would have to make sure I gave my daughter some attention too because he kept hogging it! But they are so worth it, I couldn't imagine life without kids and now I have 4 Grandkids too!! When I see the kids I cannot resist picking them up and playing with them and laughing etc. I pay for it but I just can't resist! Their so darn cute!

It's weird how once things settle down the pain does kick in more. I've done it by just puttering in the back yard and nothing is hurting while I'm pruning and picking up stuff etc., until I stop and then look out.

Glad to hear the lidocaine worked at least somewhat. So you can't get the gel there? I wonder if the gel will be more sticky? I have a gel that I use now but it works better on my arms and legs for arthritis and it's kind of sticky and messy.

I don't miss driving except when I need to go shopping because it was scary trying to concentrate on driving while in pain, if I was close enough to home I'd be driving and getting a pain pill or muscle relaxer out of my purse and taking it. I could always time it pretty good and if farther away I'd take 1/2 of one and at least lessen the pain a bit. I found the lights at night were bad for pain too so I would try to avoid driving at night.

This site is helpful that's for sure. How long have you been on it? I think I've only been here for just over a week, huh it feels like it's been longer.

I've been having a sore throat since 3:00 am last night so I think I'll head to bed now. Also the muscle relaxer I took is kicking in, thank God.

Wish you all the best,

Cheryl



Momof3 said:

So I tried the lidocaine again. I think to some degree it worked. It does seem to work better on the non-stabbing pain. I had a fall festival tonight with the kids for 2 hours. It was challenging to keep up the kids. I have an 8yo beautiful daughter and 3.5yo twin boys. My daughter is only tough because she wants some of the attention the twins get, even when it is negative. The boys are just rambuncious active crazy boys. They are the sweetest and when they are good, they are just the cutest angels. But when they aren't, it drives me crazy, them crazy, and my TN crazy. So we had a tought time getting into the party for the kids, but once we were they everyone had the best time in a long time. I even forgot about TN for a while. But when we left, were driving home, and winding down, the pain started in the left temple, down the side of the face and around to the back part of the ear. A pressure and thumping, almost pulsating moderate pain. I used some of the ointment and then the next few minutes to an hour, most of that is gone and I have just the level 2 out of 10 pain that the gabapentin usually leaves me.

My TMJ has been an ordeal to handle the last 2 years, but when it flares up, I go to a soft diet, a course of steroids, and muscle relaxers and typically it is calmed down in a month or so. For a year, I followed a TMJ forum and read a lot, but not a lot clicked. When they diagnosed the TN and I got on here, everything started to make sense and I feel the comradere and understanding that I couldn't find even from my own family. I finally learned that the TMJ causes the lack of jaw opeing and soreness in the immediate area. However, the peripheral pain that even radiates to the teeth are the TN acting up. I have the constant pressure in my cheek around two certain teeth. Before the diagnoses, I went to a dentist. I thought, gosh did I have a horrible tooth teeth that needed a root canal somehow? The dentist did some xrays and said it was a small cavity, but ok, lets fill it and see if that makes it go away. My jaw locked during the filling and I cried for 45 minutes while he said he has to finish and he hated seeing me in pain. Then he sent me to an oral surgeon for TMJ who said he didnot want to operate because he couldn't do anything for the degeneration. Basically said too bad, nothing I can do. Live with the pain. Some how it subsided after about two months. I had 17 months of nothing. Then the constant pressure pain turned stabbing also. I finally went in to my gp (in tears) when she diagnosed the TN and got me on my path to some recovery. I found this site and it is a Godsend. It gives me so much information and support.

Sorry, I am rambling. Thanks for reading my story. I guess I came back to say, for me, the lidocaine ointment worked today for the mild/moderate pain. So to me that is a win. I will still search for help with the stabbing pain, but any relief is good. I wonder why Canada has the gel and the US seems to be the ointment. I think the gel might even work better because it is not so thick.

Cheryl-I hope this winter is kinder to you than the past. I hope I never have mother nature as a trigger. I don't know how I would handle that.
32

Does anyone know why a muscle relaxer might help with TN? I have some from another doctor, but it was for my TMJ problem. I never really thought of using for TN. However, I remember being very sleepy when I take it...I too fear the dentist. Truth be told I haven't been to one in over 17 months for fear of triggering anything. Funny thing is, my sister is a dentist (far away so I can't see her). I don't know how she does it. I would be her nightmare patient.

Cheryl-hope you feel better. Yes, kids can be great, but they are also a source of my pain. Is that a catch-22? I just have to learn to deal with the stress of kids better. Better balance. I didn't really feel like I over did it last night, but maybe so and that flared up the TN. I just basically spent the next few hours blankly lying in bed, hoping the pain would subside. I just hold the side of my face and my husband knows why. He is great and always wants to help. But his idea is getting me more meds, or using pain killers, like it would work. Men want to fix things and that's what he wants to do, but he doesn't understand that sometimes just holding my hand is some of the support I need, to get through periodic stabbing pain episodes.

I've been reading on the forum since August, but don't post a lot. Posting is new to me. Being open to other people. But being so far away, I am starting to think this networking helps everyone reading or posting. We all have unique situations, but have the TN as a common bond, that very few others understand but us. I find myself reading as often as I get on the internet. Hoping to find someone who is reading and supporting from the virtual web.

33

Thanks Momof3, I'm struggling today with tendonosis pain in my left shoulder, I've tried everything except go lay down. I took a torodol today for the pain but it didn't really do much except make me super drowsy. I haven't taken one for a few months now. I use Flexeril for my muscle relaxer and I find it's the only med that works for my TMJ and yes somewhat for the TN, I'm thinking because it might relax the nerves too.I still get sleepy on them too and at night if I need one I try to wait until close to bed time. I find when I'm laying down the pain is worse. The flexeril helps!

Too bad you don't live closer to your sister. I have a niece who's a dental hygienist at my dentist, I really should go! Whah.

That's nice that your husband is so caring. As the saying goes "boys will be boys" and having 2 of them is a struggle I'm sure. Good news is they grow up, different stages etc.

I can't type anymore, my shoulder does not like it! I have to rest it now.

Take care,

Cheryl



Momof3 said:

Does anyone know why a muscle relaxer might help with TN? I have some from another doctor, but it was for my TMJ problem. I never really thought of using for TN. However, I remember being very sleepy when I take it...I too fear the dentist. Truth be told I haven't been to one in over 17 months for fear of triggering anything. Funny thing is, my sister is a dentist (far away so I can't see her). I don't know how she does it. I would be her nightmare patient.

Cheryl-hope you feel better. Yes, kids can be great, but they are also a source of my pain. Is that a catch-22? I just have to learn to deal with the stress of kids better. Better balance. I didn't really feel like I over did it last night, but maybe so and that flared up the TN. I just basically spent the next few hours blankly lying in bed, hoping the pain would subside. I just hold the side of my face and my husband knows why. He is great and always wants to help. But his idea is getting me more meds, or using pain killers, like it would work. Men want to fix things and that's what he wants to do, but he doesn't understand that sometimes just holding my hand is some of the support I need, to get through periodic stabbing pain episodes.

I've been reading on the forum since August, but don't post a lot. Posting is new to me. Being open to other people. But being so far away, I am starting to think this networking helps everyone reading or posting. We all have unique situations, but have the TN as a common bond, that very few others understand but us. I find myself reading as often as I get on the internet. Hoping to find someone who is reading and supporting from the virtual web.

34

My pain is bad too tonight. I am typing with one eye patched closed because it hurts behind it. Makes it hard to read too. Maybe I should take a flexeril and see if I feel better too. I am already tired, so maybe I should just go to sleep…

35

Sorry I haven't been back. It got cold, damp and windy here and I have been in a lot of pain. I really like my Dr. He is the only doctor I have ever been to who seems to be totally aware of just how painful this can be. His attitude is that we will do whatever it takes to control the pain as much as possible. Lorttab does help me when the pain is not horrendous. He prescribed the Demerol to keep me out of ER trusting ME to know when I need it. The other thing I like about him is that he listens, he never makes me feel he is in a rush to get rid of me and is totally open to considering many of the things I have read about on here. I keep a note pad next to the computer and write down some of the things other people have found that work, then I take it to my appointment with him (otherwise I would never remember) and we go through each one and he tells me if he thinks it would work or not for me and why.

I wish you all pain free days and restful nights!

36

No worries kcmustang. I haven’t really been on in a few days either. I tried spending some quality time with my family, busy time with fall festivals and the kiddos. It’s weird because I don’t feel the TN flare ups when I am out for about two hours. But as soon as I get in the car to come home, the pain starts immediately. A general squeezing pain, then the sharp pains start. It is almost like I run on adrenalin during the “fun” time and then as soon as the fun lets up, I pay big time. Then I struggle all the way until I get the kids to bed. Then I lie in bed waiting for whatever pain meds I decide to take to kick in.

I love my doctor too. She sends me emails after I get new meds or change doses to check on me. I express any of my concerns about if it works, side effects, other questions. Then she emails back. I feel bad like I ask her too many unanswerable questions. Sometimes she doesn’t give me complete answers but I still feel like she tries very hard for me. During my office visits, she gets on the internet searching for answers. I get some control over my doses of meds and she listens to suggestions like the lidocaine. I haven’t been given really much pain killers though. I don’t really know when to take it and I am afraid of getting addicted. I keep thinking I can get through the pain and make it until I fall asleep or the next dose of gabapentin kicks in or I take an extra dose.

Cheryl-how are you fairing the last few days?

I hope you all can get some rest tonight and have a better day tomorrow.

37

Sorry to hear of your pain kcmustang and momof3. kcmustang it sounds like you have a great Dr.! Wishing mine was more like that. We had a snow storm blow in Sunday afternoon and I had to go out in it (walking) and my thick scarf saved me I think. We took a big hit in a temperature drop but it wasn't too bad, still pain but I just tried to relax so that I could drive today. I was able to drive and do my big shop. Momof3...I have found when in the pain zone it worsens if I try to type or read too much on line, must be the lighting?!

It's already bugging me again, best go get more heat on my shoulder and neck!!

Have a good night all,

Cheryl

kcmustang said:

Sorry I haven't been back. It got cold, damp and windy here and I have been in a lot of pain. I really like my Dr. He is the only doctor I have ever been to who seems to be totally aware of just how painful this can be. His attitude is that we will do whatever it takes to control the pain as much as possible. Lorttab does help me when the pain is not horrendous. He prescribed the Demerol to keep me out of ER trusting ME to know when I need it. The other thing I like about him is that he listens, he never makes me feel he is in a rush to get rid of me and is totally open to considering many of the things I have read about on here. I keep a note pad next to the computer and write down some of the things other people have found that work, then I take it to my appointment with him (otherwise I would never remember) and we go through each one and he tells me if he thinks it would work or not for me and why.

I wish you all pain free days and restful nights!

38

Cheryl- glad you could get out and drive and shop today. Sometimes it is nice to just get out and be normal. Luckily in TX, we are still having 60-80 F temps. About the lighting, I agree it plays a factor. I have my ipad brightness turned down so low, my kids complain they can’t see the videos and I constantly change the settings. When my right eye bothers me at night, I use an eyepatch until it passes.

39

Thanks momof3...It was great!! I'm kind of paying for it today though. I've had to lay low today by not using my left arm and using my tens machine and heat. Hoping it pays off for tomorrow, I get so bored and frustrated not being able to do stuff, but I know what will happen if I do. Does our eye bother you often?

Cheryl
Momof3 said:

Cheryl- glad you could get out and drive and shop today. Sometimes it is nice to just get out and be normal. Luckily in TX, we are still having 60-80 F temps. About the lighting, I agree it plays a factor. I have my ipad brightness turned down so low, my kids complain they can't see the videos and I constantly change the settings. When my right eye bothers me at night, I use an eyepatch until it passes.
40

Some evenings, and some when I wake up. I wrote right, but it is actually my left eye. I can’t really explain how it hurts, but I know it seems to feel better when covered up. Most of the time, it seems to spread from my left temple either down toward my jaw, or across toward my eye. Sometimes it is a stabbing thrrough the temple to the eye, but only for a few minutes and then a few episodes.

Tonight is actually a good night for me. I even played some games I like on my ipad. I helped my husband with some chores (he ended up with a horrible migraine and sat in the dark for 30 'minutes waiting for the meds to kick in).

What’s ironic is at lunch, I was telling him I was wondering if my dosage of gabapentin is enough because I have been getting the pain before each next dose of meds can be taken. I was wondering if my pain tolerance is getting lower, or I expect the meds to make it ALL go away. He takes topamax for headaches and infrequent partial seizures. But his meds almost makes them go away completely, just the mirgraines. 99% of the time, he doesn’t even think about his condition. I told him I was always thinking about when the next dose of medicine cn come. He has been taking the daily meds for about 2 years now, with a couple of changes in meds, but he does so well. I have this insane thought that this one med of gabapentin at 900mg will be the last thing I will ever need to take. At the first visit, when I was diagnosed, I asked my doctor if one week in it controlled the pain, could I taper off it. She said to try it for about 3 months and we could consider tapering it. But one week in after the side effects settled in, pain crept in again, and I increased the dose. Then another week in I increased again. I am 3 months in exactly tomorrow. I can’t even imagine coming off the meds. The pain would be horrible. I guess I didn’t understand. I wanted it to be like an antibiotic, take the medice for a week and you are cured until the next infection. I thought it was one long episode, I could take the medicine and then bam-instant remission with no meds. NOPE. How wrong I could be.

I am not sure I am as strong as I once thought. It brings tears to my eyes to write this because it is admiting that TN is my life now, like it or not. The thought of meds all my life is depressing. The fear catches up. The thought of surgeries scares me to death-for my TMJ or TN treatments… I had an MRI done on my jaw last year, where they saw the degeneration and sqid nothing can be done but total jaw replacement. However, I have not had one to look at the cause of the TN. Is there an MRI to look at that? I figure it all has to do with the TMJ so what good would it do to pay thousands of dollars to say nothing can be done. And what if they said MVD could help? How could I be laid up in a hospital or around the house with my family depending on me, work…

Sorry for the long post, I guess something opened the floodgates and it just all came out. Somewhat therapeutic to write it down, and definitely scary to express all the fears.




Cheryl said:

Thanks momof3…It was great!! I’m kind of paying for it today though. I’ve had to lay low today by not using my left arm and using my tens machine and heat. Hoping it pays off for tomorrow, I get so bored and frustrated not being able to do stuff, but I know what will happen if I do. Does our eye bother you often?

Cheryl
Momof3 said:

Cheryl- glad you could get out and drive and shop today. Sometimes it is nice to just get out and be normal. Luckily in TX, we are still having 60-80 F temps. About the lighting, I agree it plays a factor. I have my ipad brightness turned down so low, my kids complain they can’t see the videos and I constantly change the settings. When my right eye bothers me at night, I use an eyepatch until it passes.