Hi everyone…
Has anyone taken Lyrica while on Tegretol for “breakout pain” ? After 10 yrs on Tegretol, and not wanting to increase to1000 or more, as one becomes a Zombie & cannot function very well, I am getting more bouts of pain breaking thru. My doctor thought maybe I should try Lyrica in place of Tegretol, so changed over gradually, over 5 days, currently dealing with awful dizziness, headaches, numbness in face, ulcers in mouth, on about 300 Lyrica a day, cbut pain is bad, day & night. Trying to increase slowly to find a level that will deal with the pain, and give time for side effects to settle, if the do? But struggling. Already considering going back to Tegretol… xx
Hi Luke,
Thanks for msg saying Lyrica was not on PBS, so expensive.
Posting here, so others can also comment.
My script from doctor was covered by PBS ??
On Healthcare card, as a pensioner, so only cost $6
Full cost - on label says $ 26.31
NOTE: My Neurologist sent a letter to my GP to write a script.
She said if a neurosurgeon/neurologist wrote the script it would be more expensive… Do not understand why?
Regards
Hi. I also moved from Tegretol to Lyrica after using Tegretol for 5 years. I started feeling dizzy, nauceas and having the Zombie feeling. My doctor then said that we should go back to using the Tegretol as before but add the Lyrica in a lower dose. That is working well for me, it is making the pain bearable. We did test the Lyrica doses for a while but found that the lower doses Tegretol 400mg and the lower doses Lyrica 50mg actually has a better affect on the pain than a higher dosage. Riana
Thank you Riana, I had a bad effect from Lyrica as soon as I got to 200mg/day. Headaches, dizziness, could not see well or even walk straight, plus my eyes were sensitive to light. The other thing Lyrica did was to cause a lot of numbness and needles & pins in my chin, then my nose and face.... strange. Maybe that is how it works on the nerves... On top of that it did not reduce any pain. So my pain got worse as I reduced the Tegretol.
My neighbour drove me to my doctor and we decided to go back onto the Tegretol and slowly come off the Lyrica. Seeing I have taken Tegretol for 10 years with no ill effects - blood tests, liver & kidney function tests all good, then it must be compatible with my genetics.
So I am going to increase the Tegretol when needed, for breakout pain when it comes.
As I am coming off Lyrica, I am noticing that it does have a better effect on the pain, as I come back on the Tegretol, than a higher dose Lyrica, but I do not like the numbness of the face, which is still there.
Seeing I have had constant pain since January, I am dreading Winter, as that is usually when I get the pain.
Regards Gail
Hi I was first given Lyrica was ok for a short while then great side effects not knowing which day it was, bad pain in the groin
I was then put on Tegretol is ok but not when pain breaks through and is unbearable.
Sunshine
Lyrica went on the PBS list in Australia at the beginning of 2013.
Hi all, my name is Anne Morris, from Adelaide, I have suffered from TN since 2009, the result of having a wisdom tooth removed, I had an MVD in November 2012, unfortunately it wasn’t successful, so here we are on 800mg of Tegretol a day, backed up with 10mg of Endep a day, I am coping with this mostly? but like all of us, there. Are breakthrough times, when nothing I take or nothing I do can stop the horrendous pain…
I had a terrible two months (September and October) things are okay at the moment.
My doctor has just prescribed Lyrica, she wants me to take 75mg at night instead of the Endep…
From your replies, Lyrica doesn’t seem to work all that well?
I spoke to a lady only today, who said she had acupuncture on two separate occasions and she never had any more pains after that? Has anyone tried acupuncture??
It’s great to be part of a local group, I have received lots of love, support and helpful advice from the main support group, but most are from America, so this is brilliant, hope we’ll all talk often, good to have found you, hope you all have pain free days ahead, hugs Anne
Hi everyone. I’m just new to the group from the Mid North Coast in Australia but I’ve had TN for about 27 months now. I was put on Lyrica because I am already on Topomax for migraines and I was told that they work well together. It took about a year for the GP to get the right dose but about 6 months I got sick with a bad cold (air con’s at work and heat outside) and my TN, with some help from the migraines, have been giving me HELL. I am on 275mg Lyrica, 400mg Topomax and 60mg Cymbalta per day and it’s just not working any more. I’m going to my GP soon to get more help and ask for alternatives as its really affected my work. Has anyone had their work affected by the med’s or TN? Regards Toni
Hi Aussietough, I am in a customer service/call centre type job and my employer has reduced my phone activity as it was triggering neuralgia attacks. Also cut back my workload a bit as the tegretol makes it hard to focus in the mornings, even offered to arrange a desk swap to somewhere not directly under the aircon vent. Reading other people’s experiences with workplace issues and bosses that just don’t understand has made me realise just how lucky I am. My coworkers are ready to jump in and pick up the slack for me when going through a particularly bad patch.
I am on tegretol only 200mg twice a day, but I can feel it is starting to become ineffective. I got up to 1200mg a day about 3 yrs ago, then had an MVD. Pain returned last year, heartbreaking.
I am on NSW South coast. Regards Debbie
Hi Guys,
do not know if this will be of any help, but after such an awful year last year... I actually went back on higher doses of Tegretol about 800mg a day...and gave away the Lyrica ..... until late August then started reducing Tegretol 500mg Sept 300mg Oct-Nov 200mg - as the weather got warmer I was able to take less... Dec to March 100mg a day. then we had 3 days of very very hot weather and the TN went away... just like that...
At the same time, I had been trying to lose some weight - about 5kg around the middle so I would be 60kg again.
Well I have lost the weigh, 7kg actually now 59kg and the TN has not come back this Winter... amazing... I still take 1000mcg B12 three times a week now - not sure what has triggered it not coming back... the weight loss or at last the B12 which I have taken for several years at 1000mcg per day - has helped build up my nerve sheaths ...
But this is the first time since 2004 (11 years) that I am not suffering thru Winter...
I can still feel it - tiny twinges on both sides of my jaw & face, but the electric shocks do not start... my teeth do not ache... It is like the nerve is not being rubbed by blood vessel, which is the physical aspect of TN..
All the meds effect any job you have - they effect our whole life and what we can cope with...
I am keeping warm, turning on the split system to warm my room, before I go to bed and auto start at 4am in the morning when its about 8 degrees outside... rug up when I go outside..
I hope this continues... will update you if it changes...
But I feel wonderful and have all my energy back...
Hugs to all and hope you find a balance of meds and life... xxx
I'm on Lyrica 3 times a day so up to 450mg per day. And while having to pay for it. It doesn't work for me.
Are you in NZ?
I'm from NZ and it costs me $180 on doctors script. Pharmac wont fund it. Its not working anyway so I', going to get off it soon. $180 for about 3 weeks.
GP said:
Hi Luke,
Thanks for msg saying Lyrica was not on PBS, so expensive.
Posting here, so others can also comment.
My script from doctor was covered by PBS ??
On Healthcare card, as a pensioner, so only cost $6
Full cost - on label says $ 26.31
NOTE: My Neurologist sent a letter to my GP to write a script.
She said if a neurosurgeon/neurologist wrote the script it would be more expensive... Do not understand why?
Regards
I tried three months a acupuncture and 3 months of Sacral cranial work and nothing helped me.
anne morris said:
Hi all, my name is Anne Morris, from Adelaide, I have suffered from TN since 2009, the result of having a wisdom tooth removed, I had an MVD in November 2012, unfortunately it wasn't successful, so here we are on 800mg of Tegretol a day, backed up with 10mg of Endep a day, I am coping with this mostly? but like all of us, there. Are breakthrough times, when nothing I take or nothing I do can stop the horrendous pain.....
I had a terrible two months (September and October) things are okay at the moment.
My doctor has just prescribed Lyrica, she wants me to take 75mg at night instead of the Endep.....
From your replies, Lyrica doesn't seem to work all that well?
I spoke to a lady only today, who said she had acupuncture on two separate occasions and she never had any more pains after that? Has anyone tried acupuncture??
It's great to be part of a local group, I have received lots of love, support and helpful advice from the main support group, but most are from America, so this is brilliant, hope we'll all talk often, good to have found you, hope you all have pain free days ahead, hugs Anne
Hi yes I have had lyrica along with tegretol and the lyrica made me so crook in the stomach and have numb lips that I stopped it , my neurologist had just started me on the original version of Lyrica who’s is gaberpentin 300mg twice a day and I haven’t had any side effects as yet
Strange that I can cope with 450mg Lyrica a day but gabapentin was no good for me.
Still unsure whether Lyrica is working for me anyway at full dose 16 days.
Amazing how different we all are....
I am very lucky; I went into remission January 2016 and no pain since... only a twinge in a tooth for about a week
which was not the tooth - my dentist showed me how to test it... tap the tooth with a steel knife handle,
if it hurts like hell, then its a tooth problem, but with TN when I tap the tooth, the pain goes away. :0)
I still keep my B12 at 1000mcg but not daily now, weekly... Thompsons - cherry flavoured.....
I am sure the B12 has helped build up the nerve sheaves. I took 1000mcg per day for a couple of years.
If I get twinges, I increase my dose to 2 or 3 days a week now.
B12 is water soluble so your body washes out what it does not need; like most B vitamins.
I am visiting my daughter in June in Canberra; that will be a real test as cold weather can bring it on....
I hope the Lyrica works for you.... and that you get a break from the pain soon.
I was just going to get a B12 blood test done.
I'm wondering now if I have burning mouth syndrome but also have nerve pain on the top of my head and to the right of my nose. I still struggle to believe I have TN2. And my neurologist recently said he thought I had Burning mouth syndrome. WELL why didn't he say that three years ago.
Thanks for helping me to realise I can take a lot of B12 if I need to, because that's what I need for BMS.
How long after starting the B12 did you realise it was of help???
I have also taken for 3 months a nerve renew pill posted from America.
Good luck on your travels.