Anyone else not taking Anticonvulsants for their TN

General General TN & GPN (Old Site)
1

Morning Everyone,

Is there anyone else with TN, that can't take anticonvulsant drugs?

I don't tolerate even the smallest dose. Also my Liver Function tests come back abnormal. They should all do that test before you start these drugs.

I have right sided TN in all three branches.

I am on oxyctone 20 mgs three times a day and digesic for break through pain. Doesnt really work when its is extreme and in all three branches. Nothing works.


They are banning Di-gesics. It is in court at the moment, so must cause some pretty bad side effects. Has been out for over 30 years and is only now they are banning them.

Love to hear from someone else not on anticonvulsants

Chris:)

2

I took 2000 mg of carbitrol daily for 3 years (lower doses for 5 years. I had to have liver tests done once a year. It was the only thing that helped the daily pain. My liver is fine even after years of taking this drug. Luckily I am med free/pain free since MVD a year ago.

3

Hi Chris!

Today's appt with neurologist determined that I'm getting off neurontin (I'm on a high dose and fed up because it doesn't do anything but make me a dip). I'm going to try increasing Effexor, baclofen & lidocaine patch. I initially started off on Tegretol, but was allergic. Have tried almost everything else. Amitryptiline made me ill. I have atypical nerve damage after a very violent root canal/apicoectomy. Unless something else gets invented, I'm running out of pharmaceutical options.

What is a di-gesic? Opiates make me barf, so those are reserved for my worst days & nights. Also being referred to a new pain management center, but injections & blocks have failed with me historically.

So all you can take is Oxy? Does it address your day to day pain and symptoms?

4

Hi Colleen,

No oxy doesnt do much. I also can't increase it as i get sick and itchy. Digesic is for break through pain but think it helps when the pain isnt extreme. Not even liquid morphine does nothing. Pain specialist tried 10 times in one year to freeze it and nothing happened. Another surgeon tried six nerve blocks in two hour period and did nothing.. Pain specialist wants to put me on methadone tablets. But not sure what happens then when nothing else works. What is Effexor? I am on endep 150 at night. Have put on weight with it. Tried Baclofen and I couldnt wee. Was horrible and my legs got swollen from fluid retention. So you are like me, we are running out of options.

My pain is in all three branches. Right eye weeps when in that nerve. Also makes me sick in tummy and bad headache and pain in eye and forward head. Top jaw and side of nose and ear pain. Really loud ringing in right ear when extreme. Lower jaw i always have ache and goes around back on right side of head. I can touch one area and get electric shock inches away. Is amazing when you think of it. From jaw surgery I still have numbness on right side of bottom jaw. Lately getting pins and needles along side on tongue.

When extreme I can get neck pain then goes to collarbone to right arm down to pins and needles in couple of fingers. So not great because I am a photographer. I gave up weddings because when pain is extreme I can't postpoone. So doing maternity,babies and newborns. Sometimes families. The main reason I cancel appts is if in eye and migraine.

From suggestion in here i started vitB complex once a day. I did try patch but doesnt work.

How is your day going and what S&S do you have?

Chris

5

Good Morning Beautiful People,

I have so far been unable to tolerate, Anti-depressant Nortriptyline(Pamelor/Aventyl),

Anti-Convulsants= Carbamazepine(tegretol), Oxcarbazepine
(Tripeptal),Gabapentin (Neurontin),Topomax (Topiramate), and Klonopin. They never even tested my blood before or after the anti-convulsants, so I have no idea what it did to my liver or insides. I have more and new symptoms after taking them also. TN moved into my right side, I became hypersensitive to all noise, the migraines, eye problems all got worse after taking them. I believe that those drugs had something to do with it. Particullary Neurontin. Have talked with another person who says after taking Neurontin she also got new permanent pains.

I have it in all three branches started on left side now begininning on right side for last 3 months and we are trying to figure out if my eye problems and ear problems(hyperacusis)7th and 8th cranial nerve are another nerve or just TN 5th cranial nerve giving me secondary symptoms. This crazy illness has everyone fooled. The only way is process of elimination.

Like you Chris, my eye or eyes tears usually after waking up, there is a crust like and my top eye lids swell up. Sometimes below the eye also. I get pain behind the eyes sometimes, but always if I look at bright light especially flouroesents. I will get pain behind the eye when it turns into a migraine also. The corner of my left eye often feels like glass is in there, and it twitches and quivers if I do not take my meds or get really stressed or have to take off my sunglasses for a while in the light. The light feels like ice picks into my eye balls. Then when everything is really flared up I get hit with a hammer in the back of my head. So thats why we need to rule out or in Occipital Neuralgia. Seems that when ever the left side of my tongue starts zinging during the night or am, that means I am gonna have really bad head pain. It is usually in the V1 area of my scalp, but can move temperaly to the back of my head. Sometimes they are cluster headaches. I have to really pay attention so I know what meds to take sooner than later. Probable forgot something but thats the jist of it.

enough for now, Therese

6

Hi Therese,

Your S&S are so much like mine. But I have continual ache in lower jaw. Had three teeth removed two in top and one on right. Apparently its common to think its the teeth causing the problem but its the TN. Also i take endep150 at night, so like you its only anti depressant i can handle as well as pain meds.

Also had my eyes tested again for glasses. He couldnt believe how my right eye is affecting my sight. New glasses as well as go back within year rather then every two years because of damage.

When its all flared up the pain at the back of my head on right side causes such extreme pain. Also if you touch the outer corner of my right eye lid I get zapped at back of head. Like railway lines.

I have recently started to get that ache on left bottom jaw. Not sure if something wrong or TN has crossed over?

Well have another photosession today so hope you have a great day. I have been up since 3am watching the swimming finals:)

Chris

7

Hey the first two years of going to doctor after doctor they kept passing me back to the dentist, dentist said all looks good you must be grinding teeth at night. NO i said because I feel better at night when I sleep and wake up better. As day progresses my jaw swells up at V2 (I did not know that then) makes it so I have to hold teeth apart because can not close them due to fact alignment is off and touching teeth together is exeruicatingly painful. Dentist would send me back to sinus doctor and so on. I have to drink through a straw as not to trigger pain with liquid or air on teeth + movement of jaw chew or talk motion causes swellin and TMJ like pain. Can become constant when flared up by certain triggers. Noise also is a pain trigger for teeth, cheek, sinus, and breathing freeze pain. When its bad its bad.

Hope your photosession is great, Therese

Chris said:

Hi Therese,

Your S&S are so much like mine. But I have continual ache in lower jaw. Had three teeth removed two in top and one on right. Apparently its common to think its the teeth causing the problem but its the TN. Also i take endep150 at night, so like you its only anti depressant i can handle as well as pain meds.

Also had my eyes tested again for glasses. He couldnt believe how my right eye is affecting my sight. New glasses as well as go back within year rather then every two years because of damage.

When its all flared up the pain at the back of my head on right side causes such extreme pain. Also if you touch the outer corner of my right eye lid I get zapped at back of head. Like railway lines.

I have recently started to get that ache on left bottom jaw. Not sure if something wrong or TN has crossed over?

Well have another photosession today so hope you have a great day. I have been up since 3am watching the swimming finals:)

Chris

8

There are so many people who reuse to take anti-convulsants because the side effects are often more disabling than the pain, and they are unable to earn a living on them. I had to stop within a week or so due to liver problems. I see youre in Australia. Maybe you can explain what digesics are, for the rest of us. I was put on morphine, a low dose, with the prescription saying I can take a small amount on better days, and a larger amount on worse days. I had bad side effects on oxycontin and hydrocodone. I dont have those effects on morphine. I also have an anti-anxiety drug, but not for anxiety. Its used to calm the nerve endings that are raging, and it helps, too. I have so few side effects on these meds compared to when I was on theone you are taking. I also like that I can lower or raise the dose a bit. It might be worth discussing with your Dr.

9

Hi folks:

I never felt right when taking anticonvulsants and it never really helped. A friend uses oxcarbazepine, which reduces risk of some blood disorders (vs. carbamazapine) and she gets relief, but is gradually cranking up the does.

I posted a while ago that I was using the PainShield low-energy ultrasound device with success. After about 2 months of use, I have been able to stop regular use altogether. If I start getting electrical zapping, I use it again for a day or two and get durable relief. I still have muscle pain in my jaw muscle if I talk or chew tough food. I think that 10+ years of TN pain has damaged the muscles through spasming (they feel "wiry" on the affected side).

Some of you reacted skeptically to my report and others had concern about the ultrasound messing with your brain. I was more concerned about the blood pressure spikes I would get during the pain (BP going from 110/70 to 180/130...). Also, God only knows what the ACs do, so there are no "free lunches" in TN. In 10 years I have never been as free of pain for as long as I am now.

There are a few tricks to using the PainShield properly that I discovered on my own. One is that the transducers need to be VERY SNUG against your face to work. Air dissipates the waves. I tried wrapping my head with this elastic thing that PainShield recommended, but it was uncomfortable to sleep and too easy to dislodge the transducer while sleeping. I discovered "KT TAPE Original Cotton Elastic Kinesiology Regular Therapeutic Tape" on Amazon, which is precut into 10 inch strips which can be further easily used to make four 1" x 5" strips. It is slightly stretchy, and I tape the transducer to my face with an "X" formed by the two of the pieces of tape. Very snug, but easy to peel off in the morning.

The other trick is WHERE you put the transducer. You want it on BONE, not flab, but close to a trigger point. Even then I had to experiment to discover which trigger point was crucial. For me, it was high up, where my cheek bone meets my jaw joint. BTW, I have ZERO financial interest in the PainShield (except the $600 bucks for the device and another $200 for spare facial transducers)!!! It was an expensive experiment, but there is a 30-day money back deal, and now you would have to pry the device out of my cold dead hands...

It is a bit tricky to use (operates 6 hours per night, has to be recharged every day, taped on your face every night, etc.), but for me that was better than wolfing down hundreds of grams of meds. My heart goes out to all of you. Hope others have the opportunity to try it. SwedeP

10

Hi Chris,

Sorry for delayed reply...man we all go thru a load of crap, don't we? I get sick n itchy too with opiates, and a few yrs ago I was given methadone but that was in Calif. and here in Texas it's hard to get pain control. Effexor is an anti-depressant that's also used for nerve pain and Type 2 symptoms. We share all the same symptoms, down to the pins & needles, swelling, etc. Sometimes I wake up and my whole jaw is swollen up and my eye leaks just like yours. I'm not sure what S&S is, but if you mean symptoms, we have pretty well the same problems. I get a lot of teeth pain and shocks in my teeth. A lot of numbness from eye to jaw and a burning feeling inside my mouth.

My favorite thing to think about now is Time Travel, and going back to before it happened. What a thing this is. It's hard to believe it is even real. It's too horrible to be real. Thanks for the message and I hope you post again and have a ton less pain. And lots of fun too.

Chris said:

Hi Colleen,

No oxy doesnt do much. I also can't increase it as i get sick and itchy. Digesic is for break through pain but think it helps when the pain isnt extreme. Not even liquid morphine does nothing. Pain specialist tried 10 times in one year to freeze it and nothing happened. Another surgeon tried six nerve blocks in two hour period and did nothing.. Pain specialist wants to put me on methadone tablets. But not sure what happens then when nothing else works. What is Effexor? I am on endep 150 at night. Have put on weight with it. Tried Baclofen and I couldnt wee. Was horrible and my legs got swollen from fluid retention. So you are like me, we are running out of options.

My pain is in all three branches. Right eye weeps when in that nerve. Also makes me sick in tummy and bad headache and pain in eye and forward head. Top jaw and side of nose and ear pain. Really loud ringing in right ear when extreme. Lower jaw i always have ache and goes around back on right side of head. I can touch one area and get electric shock inches away. Is amazing when you think of it. From jaw surgery I still have numbness on right side of bottom jaw. Lately getting pins and needles along side on tongue.

When extreme I can get neck pain then goes to collarbone to right arm down to pins and needles in couple of fingers. So not great because I am a photographer. I gave up weddings because when pain is extreme I can't postpoone. So doing maternity,babies and newborns. Sometimes families. The main reason I cancel appts is if in eye and migraine.

From suggestion in here i started vitB complex once a day. I did try patch but doesnt work.

How is your day going and what S&S do you have?

Chris

11

I am using total herbal treatment so far. Kava Kava, Valerian ... Believe it or not, Coors Light helps !! I am presently looking for the B complex B1612. Good hot coffee seems to help calm me and makes the pain lessen.

12


SwedeP I am so happy I saw your post! For at least 2 years I have been trying to find someone who used this product and could terll me as much as you have! How long have you been using it? There is a lady who also wanted to know if anyone used this, you can copy your info from this discussion onto here:

http://www.livingwithtn.org/forum/topics/has-anyone-had-experience-with-ultrasound-treatment

Thanks!

Sheila

13

My chiropractor uses ultra sound on my neck, sometimes face. It helps reduce pain for sure. I also use a tens unit, which is also pain reducing. I am saving up for a LILT low intesity laser therapy, recommended by a pain suffer.

SwedeP said:

Hi folks:

I never felt right when taking anticonvulsants and it never really helped. A friend uses oxcarbazepine, which reduces risk of some blood disorders (vs. carbamazapine) and she gets relief, but is gradually cranking up the does.

I posted a while ago that I was using the PainShield low-energy ultrasound device with success. After about 2 months of use, I have been able to stop regular use altogether. If I start getting electrical zapping, I use it again for a day or two and get durable relief. I still have muscle pain in my jaw muscle if I talk or chew tough food. I think that 10+ years of TN pain has damaged the muscles through spasming (they feel "wiry" on the affected side).

Some of you reacted skeptically to my report and others had concern about the ultrasound messing with your brain. I was more concerned about the blood pressure spikes I would get during the pain (BP going from 110/70 to 180/130...). Also, God only knows what the ACs do, so there are no "free lunches" in TN. In 10 years I have never been as free of pain for as long as I am now.

There are a few tricks to using the PainShield properly that I discovered on my own. One is that the transducers need to be VERY SNUG against your face to work. Air dissipates the waves. I tried wrapping my head with this elastic thing that PainShield recommended, but it was uncomfortable to sleep and too easy to dislodge the transducer while sleeping. I discovered "KT TAPE Original Cotton Elastic Kinesiology Regular Therapeutic Tape" on Amazon, which is precut into 10 inch strips which can be further easily used to make four 1" x 5" strips. It is slightly stretchy, and I tape the transducer to my face with an "X" formed by the two of the pieces of tape. Very snug, but easy to peel off in the morning.

The other trick is WHERE you put the transducer. You want it on BONE, not flab, but close to a trigger point. Even then I had to experiment to discover which trigger point was crucial. For me, it was high up, where my cheek bone meets my jaw joint. BTW, I have ZERO financial interest in the PainShield (except the $600 bucks for the device and another $200 for spare facial transducers)!!! It was an expensive experiment, but there is a 30-day money back deal, and now you would have to pry the device out of my cold dead hands...

It is a bit tricky to use (operates 6 hours per night, has to be recharged every day, taped on your face every night, etc.), but for me that was better than wolfing down hundreds of grams of meds. My heart goes out to all of you. Hope others have the opportunity to try it. SwedeP

14

I use st. johns wort internally and externally. I even shove it down my ear with a qtip. I take basil, thyme, valerian, kava kava, linden, chamomile, really nice tea called seven blossoms sold in mexican maekets, etc.. I read up on the nervine herbs. I like 1 beer also, Hops are very relaxing. Coffee is not so good, but Chai tea is great for caffine and bromine(nervine). I love pharmacpia and make my own soap and 1st aide salves. Do not get the chance to say how beneficial they have been, because not to many people practice with herbs.

stay creative!

OLMEQ said:

I am using total herbal treatment so far. Kava Kava, Valerian ... Believe it or not, Coors Light helps !! I am presently looking for the B complex B1612. Good hot coffee seems to help calm me and makes the pain lessen.

15

Tree69 thank you for your response. I would like to stay in contact. I will also look for the seven blossoms tea you mentioned. There is a Mexican market not far from me, I will check today. Believe it or not, I have found Kava Kava at the 99cent only store. Thanks for sharing.

16

Oops, Typo again. I mean "many people refuse to take..." not "reuse".

Sheila W. said:

There are so many people who reuse to take anti-convulsants because the side effects are often more...

17

Therese, (Tree69) 99% of my medicines are natural medicines. I am too sensitive to chemical prescriptions, so whenever a Dr. says I need a certain type of medicine, I start researching a natural alternative. There are some discussions about natural and at-home remedies on the site. My brother wrote an encyclopedia of healing herbs and foods and plants. When printed, it ws about 1200 pages, so he put it on a disk and made it so you could look up any symptom and see which herbs have helped, or look up any food and see what symptoms it has helped. Then windows changed their format so the disk wouldn't work, and this was after 11 years of work, so he made it into a website. www.docherb.ca If you scroll down a little bit, you can see all the symptoms on the right side of the page and click on one to see what helps it, and the plants are on the left side of the page, and of course the search box at the top helps too.

Tree69 said:

I use st. johns wort internally and externally. I even shove it down my ear with a qtip. I take basil, thyme, valerian, kava kava, linden, chamomile, really nice tea called seven blossoms sold in mexican maekets, etc.. I read up on the nervine herbs. I like 1 beer also, Hops are very relaxing. Coffee is not so good, but Chai tea is great for caffine and bromine(nervine). I love pharmacpia and make my own soap and 1st aide salves. Do not get the chance to say how beneficial they have been, because not to many people practice with herbs.

stay creative!

18

Hi Shelia I don't get any relief from morphine liquid. I was allowed to up the dose from 1ml to 2ml. I even tried 5ml and nothing. Was like having water. Had to effect at all. Di-gesic has another name called capadex. Both being taking off the market:(

Two years ago their is a new trial out on the stimulator they called it. I had op to place two leads under the skin near top and bottom jaw bone. Once in you are connect to a remote and can increase waves to that area. Is to take your attention away from the pain off the TN. I clicked it up and up and up. Had it on highest number and within a minute I didn't know it was there. Made no difference to TN pain. Apparently the specialist with this new device said I accommodated the pain. Only one other person on it did the same. But when deseperate you try anything.

Before that I had accupture from six months. Also bought a ultrasound device and placed jel on top,bottom jaws. Did it for hours everyday. No difference and felt I wasted $200. But both my boys play rugby union so they use it on sore joints and muscles.

Hi Colleen we sure do have same signs and symptoms. Sorry for S&S. Old nurse coming out of me.lol. I notice when top jaw swollen I can see it in eye view. Hate it. Distracting when doing photography. Also noise in my right ear> I don't place phone to that ear anymore. Get shocks.

Hope everyone has great weekend. Friday arvo here:)

19

Chris it sounds like you have tried all that I did, but I didn't try the ultrasound yet. I can't afford to buy it to try it. I'd like to try it in a Dr. office or something before I buy it. TN is a very tough pain condition. I'm not surprised that the morphine liquid didn't work, because the liquid is meant to work fast but also leaves your system fast. There are different dosages per ml. You might have been given the dosage that is 1 mg per ml. which would only make 5 mg if you had 5 ml. If you had 10 mg. per ml or more, it might be different. Still the liquid is not the best answer. I take 12 hour capsules, and they do help. Not 100% cure, but makes life more functional and bearable. Don't give up. So many people have had remissions that last a long time. Also many try combinations of meds, and that works better than just 1 kind of med. Some that I have read about lately are trying lidocaine gel that can go inside the mouth and on the skin. Some try essential oils that help them. Everyone's body is different, as you have learned. For us it's not even one day at a time. It's one hour at a time, and during the worst pain, one second and one minute at a time.

hang in there,
Sheila

20

Hi Shelia,

It was 5mgs per 1ml. So nothing.

Had rough week so behind on my photography editing. Can't seem to do to much when its bad.

But my right ear is driving me nuts. Had ringing in it for weeks and no it feel like it is going to explode.

Anyone now what is good for the ear pain?

Chris