Type 2 tn and no treatment working

hi i have type2 tn, know treatment so far has not worked for me. i have tried meds and had a mvd done, with no luck. is this normal for tn type 2 people, not to have any treatment work. i am suffering alot and it is constant. does anyone have any suggestions on what i can try next? thanks michelle

Hi Michelle,
Sorry that nothing is working for you, it must be distressing to deal with this constantly.

Does the neurologist have a plan??? Are you still taking meds, maybe the dosages need to be increased?

Sending you a hug and hoping someone with some better ideas will be along soon.
Trish

Are you a member of the subgroup for Type II TN Michelle? There is a lot of advice and discussions there for us. Please know that it is possible to be helped with Type II TN, many find it, finding help is the hard part.

I second what Jackie said…that CONSTANT pain can send you over the edge… But I would check with neuro to see about increasing meds or adding something to give even a little break from the relentless pain. Sending hugs…:heart:

Hi Michelle…I also have type 2b…so I get the flashes of pain, and have an underlying burning pressure pain affecting my left eye, nose and upper teeth. I had an unsuccessful MVD and had multiple nerve blocks and a lidocaine injection at the base of the nerve, I have been on multiple meds and still couldnt get relief!! Finally…I had a peripheral nerve stimulator placed and my pain has decreased drastically. I still take meds but, I am so happy to say I have times where I am PAINFREE!! I work part time, I take care of my family, I run!! The pns has given me my life back!!

hi there shindig. you said your 2nd nerurologist was better then the first. what did your 2nd one do that the first did not? thanks michelle

shindig said:

I just got my type 1 under control and still have type 2. Feels like a tension starting deep inside my jaw across my cheek to under my eye that burns all the time. One aspect has almost a chemical feel like when you get chlorinated pool water up your nose, as well as an aspect that affects the gum/dental pain above the teeth.

I just found the most amazing neurologist ever, on our first visit he kicked my type 1 to the curb with trileptal which is working amazingly well for me, just based on our conversation, and I'd focused on describing the spasms, now that they're under control I'll see what he can do about the constant pain and report back if anything works. I know different people have different outcomes with meds, and I'm usually very sensitive to them so it probably won't work the same for many other people.

I'd keep searching for a neurologist unless the one you're at is amazing and working with you effectively. Someone fairly old and nerdy as they likely have a lot of practical experience. It's night and day between the one I've been going to, and the one I got a second opinion from.

hi lisa, does insurance oay for the nerve stimulator? what kind of doc would do this? do any of the meds help you at all? thanks michelle

Lisa26 said:

Hi Michelle..I also have type 2b..so I get the flashes of pain, and have an underlying burning pressure pain affecting my left eye, nose and upper teeth. I had an unsuccessful MVD and had multiple nerve blocks and a lidocaine injection at the base of the nerve, I have been on multiple meds and still couldnt get relief!! Finally..I had a peripheral nerve stimulator placed and my pain has decreased drastically. I still take meds but, I am so happy to say I have times where I am PAINFREE!! I work part time, I take care of my family, I run!! The pns has given me my life back!!

Just do not give up.Mine started 6 years ago, went through lamotrogine, tegretol, lyrica, amytrptilline, diazepam, pethidine ,phenytonin, baclofen, gabapentin, morphine, lidocaine patches, tramadol, an MVD, acupuncture, prozac.I was given tegretol and prozac and was poisoned and in hospital.The point is trial and error, every brain is different.I eventually got the most relief on 800mg tegretol(carbamazepine) and 75mg pregabelin (lyrica).It was still sore and made me tired, but the pain just suddenly went a month ago, so dont give up.Keep knocking on the doors!

hi there. did you try all those meds when you first got the tn? when did you try the new meds that took your pain away? thanks michelle

Jacqueline Cook said:

Just do not give up.Mine started 6 years ago, went through lamotrogine, tegretol, lyrica, amytrptilline, diazepam, pethidine ,phenytonin, baclofen, gabapentin, morphine, lidocaine patches, tramadol, an MVD, acupuncture, prozac.I was given tegretol and prozac and was poisoned and in hospital.The point is trial and error, every brain is different.I eventually got the most relief on 800mg tegretol(carbamazepine) and 75mg pregabelin (lyrica).It was still sore and made me tired, but the pain just suddenly went a month ago, so dont give up.Keep knocking on the doors!

Started combination of lyrica and tegretol. and patches in april this year.

jacqueline did you ever try those meds before this time? my doc says he tried me on everything already, i have only been with him a little over a year. thanks



michelle said:

jacqueline did you ever try those meds before this time? my doc says he tried me on everything already, i have only been with him a little over a year. thanks



Jacqueline Cook said:no, this was the first time i tried the 2 together.I had been on them separately.No success.Pain consultant said it was a case of fine tuning, and we would find something that worked.800 mg tegreto. 4 x 200 and 3 x 25 mg Lyrica. Also started on Lidocaine patches which helped me cut down to 400mg of tegretol. I had tried all the other meds over 6 years with not a lot of success, or success but dreadful side effects. Have gone into remission.



michelle said:

jacqueline did you ever try those meds before this time? my doc says he tried me on everything already, i have only been with him a little over a year. thanks

i have been tried on tegretol which i am on now which helps with the burning and stabbing pain. but i still have the constant severe type of pain. i have tried lyrica, nerurontin, topmamax, cymbolta, and maybe one more. i am suffering pretty bad for 3 years now. should i go yo a new doc maybe?

Jacqueline Cook said:



Jacqueline Cook said:no, this was the first time i tried the 2 together.I had been on them separately.No success.Pain consultant said it was a case of fine tuning, and we would find something that worked.800 mg tegreto. 4 x 200 and 3 x 25 mg Lyrica. Also started on Lidocaine patches which helped me cut down to 400mg of tegretol. I had tried all the other meds over 6 years with not a lot of success, or success but dreadful side effects. Have gone into remission.



michelle said:

jacqueline did you ever try those meds before this time? my doc says he tried me on everything already, i have only been with him a little over a year. thanks

Hi Michelle…Yes my insurance paid for the pns placement. There was some red tape to get through. But, it honestly went easy. The insurance company just wanted proof that I had indeed tried other options before this. I actually had to be evaluated by a psychologist too. To be sure I was mentally prepared to have a foreign object in my body and that I had realistic expectations of 50% decrease in pain levels!! I also take a very good “GOLD STANDARD” med regime. Trileptal, baclofen, amytripyline, and cymbalta…For type 2 the best combo is an antiseizure med + muscle relevant+ antidepressant…they work together to provide relief. I did have a decrease of my pain level by 50% after starting this regime prior to pns…maybe I was greedy but, I wanted less pain!! So went with this option!! So glad I did!! I saw Dr. Sekula (trained under Dr. Janetta, founder of the MVD) he strongly advised me to not have any procedures done that would damage the nerve worse. He said then I will have pain beyond imagination. He recommended the pns. I had a Neurosurgeon at Cleveland clinic place the pns.

lisa why would the pain be worse if they damage the nerve? i am not mentally doing to well with all of this. does this pnd work on everyone?

Michelle - I am also on trileptal for type 2 which has been fantastic and take migraine meds for my headaches when ibuprofen does not work.

The thing with trileptal is that you need 8 weeks before it really kicks in and I know that even waiting 8 minutes can seem too long. However I am glad I persevered because trileptal has really worked when nothing else did and has very few side effects.

Good luck

Jon

hi jon i am on tegretol isnt that the same as trileptal works?

yeah i think it may be time to try a new doc. i have not tried trilepatl is tegretol the same. does it work the same? i have not been on nortryptoline either. i am going back next week to see my neruo. after that visit i will see what i can do to get a new doc. thanks for your help michelle

shindig said:

hey michelle, if it's been 3 years with the same doc and you're still in pain you might consider a second opinion. Can't hurt and may provide relief.

I'm on something just like Lisa26 minus the baclofen and cymbalta, and probably will get one of those when I go back and describe what I'm currently feeling.

Before the Trileptal I had so many pains going on it was hard to clearly explain(or think) to the doctor which type I was experiencing. He explained the 2 types, and I best described the spasming zapping shocks of type 1 (which were constant rather than random by that point), so he gave me the trileptal + nortriptyline, now I have just the constant burning tight pain which I'll be able to tell him about when I go back. I'm weaning off gabapentin.

. I became immune to tegratol and had terrible side effects. Trileptal takes much longer to kick in ,has way fewer side effects and you cannot grow immune to it.

Jon

michelle said:

hi jon i am on tegretol isnt that the same as trileptal works?