What will you do after meds don't help?

General General TN & GPN (Old Site)
1

I am so depressed, I take Dilantin 100 mg 3 - 4 times a day and Gabapentin 600 mg 4 times a day.

I have TN1 the shooting pains, it sometimes about knocks my head off. The last few days I haven't talked much as it hits --- it hits if I walk, it hits trying to eat, it hits trying to brush my teeth- I don't even spit out the water from brushing, I just kind of let it fall out. Sometimes I don't have to move a muscle and it hits, which it has been doing a lot of this morning. Oh, did I mention trying to blow my nose is a real trick and I try not to cry cause that makes your nose run then you have to wipe it or blow it.

I had MVD Surgery about a year and a half ago, after the surgery when I was throwing up from the anesthesia and the nurse wiped my face with a wet cloth and it hit, I knew then that the surgery didn't work. I don't handle a lot of meds well and could not take anything for pain.

They even tried plain tylenol, I threw it up too, normally I can take that without a problem.

I think it must have been the anesthesia doing that.

Vitamin B shots and B Complex pills made me really nauseated, unfortunately.

I could go on and on but I have complained enough for now. I just am scared out of my gourd, I go back to the Neurologist, March 26th, was able to get my appointment moved up a week and am first on their list if they have a cancellation. I was just wondering what others do once their meds just don't seem to work any longer. I know the first thing will be to try other meds which I am not looking forward to, but then what do you do?

Thoughts and Prayers

xxOxx

2

I went and asked (found on here) for a prescription for lidocaine cream and patches

As I was coming off trileptal I used for breakthru pain before MVD

I now have 5% breakthru pain 4 days a month or so --- I put on a patch

I also went and saw a practitioner for reiki -- I did not have to wear a patch for 3 weeks!!! I thought it was a massage -- it's energy healing - and if I had not been the one who had it, I would not have believed it --- nothing short of a miracle - except its not - it's based on the energy in your body == on my second and last treatment I felt pain shoot out my little toe! then it was not in my face -- freaky! I had her come to my local support group and talk.

Keep posting!

3

I have returned to two medications which had previously stopped being effective for me. After a break of a couple of years they did their trick again. Of course that is not to say they will be effective for someone else. I feel for you, it's tough if you cannot find a regime that works for you :(

4

What about the opioids, have they tried those yet on you, maybe in combination with what your currently taking?? Or is that what dilantin is??

5

I can't take Codeine, synthethic Codeine or Oxycontin-- just can't handle any of the narcotic drugs, unfortunately.

I think I am just a lost cause, (smile)

xxOxx

6

OH my, I am deeply sorry. I hope that when you go back, your doctor can find something. Maybe there is one that you've not tried that you can handle. :( They come out with new meds at times.... hang in there. Maddy. I feel for you. Min

7

Boy, last week the 2400mg gabapentin was not working AGAIN! I was overdue for the botox inj. that work for migraine and tn (4 wks for tn pain control). I asked my doc if I could add trilleptal to the mix and since I had gained 17 lbs in 17 wks, he took away baclofen and amitriptelene at bedtime and replaced generic gabapentin w/ a new time release neurontin. It’s called Gralise. I use 1200mg p/day instead of the 2400mg p/day of gaba. It is such a relief to have an efficient med at a lower dose. Small amounts more often make it more efficient. I’m more drowsey in AM, but it’s getting better. It reminds me of the very first time I tried neurontin. My doc gave me a coupon that capped the co-pay to $15.00. Then, the local pharmacy used the coupon and gave it back to use again! Maybe Gralise is something your doc knows about. It’s been out for a few months. Many blessings to you, dear :slight_smile:

8

I am going thru the same thing right now. I have been diagnosed by 3 doctors with ATN and one doctor with TN. (seems they can't determine for sure). Anyway, my Lyrica dosage was upped about 4 weeks ago. I had 4 weeks of heaven and thought the pain was under control. I started making all kinds of plans because I was finally better. Then Wed morning everything changed. Bam! full blown pain and misery. I called my pain doc and told him what was going on, so we upped the Lyrica again. Only this time, no help. The sharp, awful pains in my right cheek won't stop. Morning, noon and night. I am devastated. I am tired of seeing doctors, I am tired of the changing meds. I'm tired of having no control over this pain - ever. I am glad to hear about the Gralise. I may ask my doc if I can try that. I had already tried Neurontin, but my old neurologist didn't monitor very well and I increased it too fast and went into a bad depression on it. As I look back, I wonder that it was the neurontin that depressed me or just this darn disorder. I am praying for you Maddy as I think we all need all the help we can get. My husband's cousin is having MVD at the end of March for her TN. I will be checking with her right after the surgery and watching over the next 6 months to see if she got "cured". If so, that is my next step. Where did you have the MVD done? How many vessels did they move off the nerve? Don't understand why it was not successful for you. Did the doctors have any reason why they felt it was not successful?

9

D, If you read the statistics of MVD. It isn't always succesful. It depends on which type of TN you have. For people with TN it has a better outcome. We have the statistics on MVD in our Face pain info tab. There are some who have achieved success with MVD and I hope that your husband's cousin will be one of them. Best wishes to you, and I hope that you feel better soon!!! :) Min

10

Hi D,

I do hope your husband's cousin's surgery goes well.

I had my surgery done at Barnes Jewish Hospital in St. Louis, Mo. by their Trigeminal Specialist that is listed on this site. The Neurosurgeon told me the pain would be gone immediately.

My MRI didn't show anything but he said they usually didn't, that was done mainly to rule out other causes first.

At surgery he expected to find the TN nerve bouncing on a vein, but it wasn't.

He said he had a nice clear view with the endoscope and didn't see anything abnormal, he went ahead and put in the piece of teflon anyway.

At my two month check-up Dr. said he wanted to do an enhanced MRI the following month.

I had a small time period there where my insurance was going to lapse and would not have any for five months, I asked him if we could wait and have it done when I had insurance again, he said he didn't want to wait that long.

I gave it some thought, I asked his nurse what he thought he may find with the enhanced MRI, she said probably nothing. Therefore, I couldn't see having to borrow the money if was the probable outcome. Don't know why he couldn't have waited another few months, they didn't make me another appointment.

Now, I am worse than ever, my cheek on that side is puffed. My Neurologist says that nerve has been damaged and this is where I am now for ever.

At times, I feel like I am ready to give up, getting to be most times.

I go back to my Neurologist the 26th and am not looking forward to that.

Gabapentin has never actually helped my TN. I thought I was taking it from the Neuropathy but have since discovered that it was helping the Dilantin work. They are not working good at all now.

I am so afraid of trying other stuff and it not working.

Neurologist once mentioned that he could try baclofen, if the Dilantin stopped working.

Lyrica , can't afford that and Dr. says it will not be covered under medicare because it was not approved for TN.

So, next step? I now see why it is called the Suicide Disease--- I am really scared, but I don't think I could ever do anything like that, I just pray that God will guide me through this, all of us with this horrible thing.

Again, good luck on your husbands cousins surgery, I have actually talked to two ladies that had it done.

They both had immediate relief, one had it done about two years ago, the other was about twelve years ago.

As far as I know they are both still pain free.

We have to hang in there together, this support group has been a big help to me.

Wish I could have found it long ago.

xxOxx


D McGinnis said:

I am going thru the same thing right now. I have been diagnosed by 3 doctors with ATN and one doctor with TN. (seems they can't determine for sure). Anyway, my Lyrica dosage was upped about 4 weeks ago. I had 4 weeks of heaven and thought the pain was under control. I started making all kinds of plans because I was finally better. Then Wed morning everything changed. Bam! full blown pain and misery. I called my pain doc and told him what was going on, so we upped the Lyrica again. Only this time, no help. The sharp, awful pains in my right cheek won't stop. Morning, noon and night. I am devastated. I am tired of seeing doctors, I am tired of the changing meds. I'm tired of having no control over this pain - ever. I am glad to hear about the Gralise. I may ask my doc if I can try that. I had already tried Neurontin, but my old neurologist didn't monitor very well and I increased it too fast and went into a bad depression on it. As I look back, I wonder that it was the neurontin that depressed me or just this darn disorder. I am praying for you Maddy as I think we all need all the help we can get. My husband's cousin is having MVD at the end of March for her TN. I will be checking with her right after the surgery and watching over the next 6 months to see if she got "cured". If so, that is my next step. Where did you have the MVD done? How many vessels did they move off the nerve? Don't understand why it was not successful for you. Did the doctors have any reason why they felt it was not successful?

11

Maddy - I so know how hard this must be for you. After writing my words this morning, I started doing some more research. I do this alot as I am always looking for more answers. I think I mentioned that I was on Lyrica 4X per day now. Well, first of all if I take it on an empty stomach, it peaks its effectiveness in 1.5 hours. If I take it with a meal, it peaks at 3 hours. It is fully eliminated (peed out) in 6 hours. I also saw a government (FDA) recommendation to take a B6 vitamin with anticonvulsants to lesson the side effects. Not one doctor told me to take B6 supplement!!!! I get terrible dizzy spells with Lyrica. I had a B6 supplement that I was thinking of trying anyway, so I took it this morning (about 25 mg). I did not have one dizzy spell today and have been almost totally pain free since this morning. This is so crazy - all my hopes are up again. I tried the neurontin that you are on and it depressed me too much - I think. Anyway, my point is that you really need to try Lyrica. I don't know the kind of pain that you are experiencing or if you are TN1 or 2 or combination. There are coupons available to use to purchase Lyrica on Pfizer web site. Also, I think you can get help from Pfizer to pay for it. ALSO, DOCTORS HAVE FREE SAMPLES ALL THE TIME. One doctor gave me 4 bottles of Lyrica samples when I went to see him - enough for 3 weeks. They were free. Have you tried Gralise - neurontin in a time release pill? Please keep trying - even if you have to change doctors. Trileptal (spelling?) may work for you too. But try the B6 supplement with the anticonvulsants to help with the side effects. Please let me know how you are doing and I will let you know how my husbands cousin comes out.

12

Min- when you are in alot of pain, with no relief - even a 50/50 chance of success for 1 or 2 years seems worth it. Seems now I am out of pain again (at least for today) so I feel like the meds are working again. However, adding alot of B vitamin supplements seems to be helping too. Oh, also Omega 3X for helping the nerves build more myelin. Maybe, every thing combined is working. I quit trying to figure what exactly doesn't work anymore - there is simply no answer. Keeping my fingers crossed that I just had a freak breakout flare-up, monster was cranky, 2 yr old tantrum going on in my face for about 36 hours and it is over with.

13

Idk, D. I had a pretty hard time dealing with depression when my intense pain came back. It was in May of last year. I wrote a blog about it on here. It's called procedure depression. I would cry every morn thinking about my future. I was even already on anti drepressants. So I went to my GP and he switched me to a different one. It was really difficult for me to accept the pain coming back after three years of just having minor aching pain from having had GKRS. I had major depression. . .

At the time tho, I was desperate to be rid of the pain and told the neurosurgeon that even if the pain could be cut in half it would be worth it. I had oh ... so hoped I would have longer than three years tho.

14

Oh my dear, I am with you right now. I have only been dealing with this pain for 6 months but it has spread through my face and from one ear to the other and now it is effecting my throat. I have been from one neuro doc to another and have been tried on just about every drug out there, except for narcotics because i am allergic to all of them. The neurontin and lyrica and ametriptaline and noratriptaline all made the pain worse. I was put on tegratol which controlled the pain but the side effects are tearing up my body and I have lost 30ILBs (which I could not afford to lose)from severe stomach pain from the drug and I am now in a wheelchair because I have lost all muscle strength in my lower extremities from this drug.. My latest neuro dropped me as a patient over the phone and the neurosurgeon i seen said anytype of surgery would only make my pain worse. I have sat here for three days crying with major anxiety and panic attacks debating suicide. The only thing right now keeping me from it is one last appt with trigeminal specialists out of the diamond headache clinic in Chicago. I see them in two weeks (which mine as well be a fricking year with the pain I am in) there is one more drug that I have not tried it is called trileptal it is the sister drug to tegratol but supposedly does not have all the same side effects. See here is my problem I have a damaged liver, my P450 pathway which metabolizes drugs in the liver was severely damaged after being piosoned by an antibiotic I took, so most drugs react badly on me because they get metabolized through this pathway, but trileptol does not and it can be used even in high doses in liver injured people, so this is my hope. I also am waiting to see if this clinic knows of anything else that has not been tried. I am very scared too and sometimes wish I could just talk face to face or over the phone with someone who is going through this with me. I hope you find a treatment and if you do please tell us and if I find something I will tell you. My prayers are with you (((HUGS)))

15

Jolie & Maddy... You are both amazing souls! Your words and heart felt attitudes are like a mirror to mine! In 2009, I was desperate for relief and began paying for botox w/out of pocket in full (which, by the way is 10x the cost my insuance now pays my provider! Can we get a break here?). For two years, every 4-6 weeks I was in for a teensy, tiny amount of this med. I was out of options because of the anti -seizure and -convulsants failed and neurontin was hanging on by a thin thread. I had to wait until week 9 for a botox treatment to the scalp and it was hell.

Our pain is hell, isn't it? So hard for a person to manage on an ongoing basis. I used to be so strong toward pain and could take a LOT. But, now after 10 years of TN, I agree that I am a whimp. I read something to the effect that the more the CNS has pain, the more sensitive it becomes to it.

To get back to the reason for this reply, as I read both of your replies, I wondered if botox was ever considered or offered for your pain? It is short lived for TN and not FDA approved for it yet, but there are other conditions for which it is approved. I use it for migraine defense and a friend of mine uses it for neck spasms + migraine defense. It would be interesting if it is on a list of conditions that you may have. I will say that the inj. are easier when there was neurontin built up in my system. Prior to last week, the doc gave me xanax to use, but it made me sleep the rest of the day, so this last time I had so much of the other meds in my system I did not take the xanax. Both the doc and my hubby commented on how much easier it seemed to be for me. Isn't it nice to be so medicated that your nervous reaction time is like 100x slower than usual? Geeze!

Also, this last time in for the inj. the doc saw I had gained 17 lbs in 17 weeks! EEK! So I was taken off the amitriptelene and baclofen and gabapentin (generic for neurontin). He put me on Gralise 1200mg to replace the 2400mg of gaba. Amazingly, it is working better than the high dose. Due to taking it 1x p/day and it being time released, it feels like when I first took neurontin and it WAS a good med for the pain. Maybe one of these two may work for you? I wonder if your neuro's have any other things that may work?

Lastly, there is a place near the MVD scar in my scalp that my doc treats with inj. of cortisone. A small amount every 3 mo. It works better than the botox! Or, I should say it lasts longer! It's nice to have parts of the three branches of TN paralysed and not painful. Some parts of the branches cannot be reached with the migraine treatment set of injections. So pain free, I am not. There are longer windows of time, though, that are low pain and no pain.

Thank you to everyone here… you are so inspiring in the fact that you guys are a never give up crowd. I am sorry for this in your life. But, I am happy that you're making lemonade out of the lemons you're receiving. All of you give me hope and energy to keep fighting and keep researching for new answers or helpful tips. I am so grateful for all of you. Thank you for being here :-)

Sincerely,

LyndaS

jolie said:

Oh my dear, I am with you right now. I have only been dealing with this pain for 6 months but it has spread through my face and from one ear to the other and now it is effecting my throat. I have been from one neuro doc to another and have been tried on just about every drug out there, except for narcotics because i am allergic to all of them. The neurontin and lyrica and ametriptaline and noratriptaline all made the pain worse. I was put on tegratol which controlled the pain but the side effects are tearing up my body and I have lost 30ILBs (which I could not afford to lose)from severe stomach pain from the drug and I am now in a wheelchair because I have lost all muscle strength in my lower extremities from this drug.. My latest neuro dropped me as a patient over the phone and the neurosurgeon i seen said anytype of surgery would only make my pain worse. I have sat here for three days crying with major anxiety and panic attacks debating suicide. The only thing right now keeping me from it is one last appt with trigeminal specialists out of the diamond headache clinic in Chicago. I see them in two weeks (which mine as well be a fricking year with the pain I am in) there is one more drug that I have not tried it is called trileptal it is the sister drug to tegratol but supposedly does not have all the same side effects. See here is my problem I have a damaged liver, my P450 pathway which metabolizes drugs in the liver was severely damaged after being piosoned by an antibiotic I took, so most drugs react badly on me because they get metabolized through this pathway, but trileptol does not and it can be used even in high doses in liver injured people, so this is my hope. I also am waiting to see if this clinic knows of anything else that has not been tried. I am very scared too and sometimes wish I could just talk face to face or over the phone with someone who is going through this with me. I hope you find a treatment and if you do please tell us and if I find something I will tell you. My prayers are with you (((HUGS)))

16

Maddy, My heart goes out to you. Today is my worst day ever so I came on looking for help. It is so wild to hurt so much the ordinary person would be in an ER, and we just keep moving through life as best we can. I guess knowing you have had such a hard time puts things in perspective for me. I'm grateful for this community and I'm sorry I have no help to offer you, but I will keep you in my prayers. Keep yelling at all the doctors, if you have to go sit in the waiting room and not leave until someone helps you.

17

Deborah, Hope you are having a better day today. I agree it helps to come into the web site. I cried when I found this site just a week or two ago. Hang in there, and know we are all here for each other. I started to type you more here, but have discovered it is my nap time, there goes a couple of hours each afternoon. I go back to my Neurologist next Monday, we will see what he may have in store for me then. My husband went and bought me a small dry erase board that I can carry around so I won't try to talk so much, lol It hurts him everytime it hits me, he is just so lost as to what to do.

Got to go, nap time.

xxOxx

Deborah said:

Maddy, My heart goes out to you. Today is my worst day ever so I came on looking for help. It is so wild to hurt so much the ordinary person would be in an ER, and we just keep moving through life as best we can. I guess knowing you have had such a hard time puts things in perspective for me. I'm grateful for this community and I'm sorry I have no help to offer you, but I will keep you in my prayers. Keep yelling at all the doctors, if you have to go sit in the waiting room and not leave until someone helps you.

18

I have a question on the Gralise. I had been taking 1200mg a day of Horizant a extended release Gabapentin from sample the Neuro gave me but insireance doesnt cover it for TN, so he prescribed Gralise 1200mg. The Horizant I took 600mg twice a day and was not really tired. They told me to take the Gralise at bedtime and am not on the 1200mg at night. I am so tired this morning. Does it get better? Have you tried taking the pills twice a day?



LyndaS said:

Boy, last week the 2400mg gabapentin was not working AGAIN! I was overdue for the botox inj. that work for migraine and tn (4 wks for tn pain control). I asked my doc if I could add trilleptal to the mix and since I had gained 17 lbs in 17 wks, he took away baclofen and amitriptelene at bedtime and replaced generic gabapentin w/ a new time release neurontin. It's called Gralise. I use 1200mg p/day instead of the 2400mg p/day of gaba. It is such a relief to have an efficient med at a lower dose. Small amounts more often make it more efficient. I'm more drowsey in AM, but it's getting better. It reminds me of the very first time I tried neurontin. My doc gave me a coupon that capped the co-pay to $15.00. Then, the local pharmacy used the coupon and gave it back to use again! Maybe Gralise is something your doc knows about. It's been out for a few months. Many blessings to you, dear :-)
19

So sorry that nothing is working for you, Maddy. Was the doctor able to give you something to help you? Praying for you! Hope you can get some relief from the attacks.

20

This is to maddy, jolie and lyndaS, I just came upon this discussion which started in march 2012 … I was just wondering how you are all going now? It sounded like you were all going through rough periods then, so I would love to have an update…

It’s terribly sad the things we have to do to try and lead halfway normal lives, we are willing to have operations, to damage nerves, to take huge quantities of meds, have Botox (and other) injections all to stop this hideous , indescribable pain… We are a tough lot, I am amazed at what we put up with, but thank goodness for each other, we could never do this otherwise. So hang in there girls, hugs to all anne