Hi,
Am new to this site and not sure if I'm doing this right. My pain mgmt doctor is
wan ting me to switch from tegretol to Lyrica. He says it is safer (low white blood count,etc.)
Am hesitant to do this because Tegretol works fairl;y well for me, although I am
st arting to experience more pain. I would like to find a neurosurgeon in my area ( middle Ga.)
that would do glycerol injections but have had no success finding one. Any advice on
either? Thanks.
There is a link on here of our "favorite doctors" you can search till somebody else jumps on here.
If what you are taking is working, I would ask to raise that up just a bit instead of starting over on something else.... Unless what you are on has UNbearable side effects for you, and your pain is mostly taken care of for now, why switch? You have to be the one to make the decision. But many wait until a med no longer works well to switch to another. Keep posting and researching for yourself!
And Welcome!
I just found out I have TN. I was already on Lyrica 50mg x 3 a day for fibromyalgia. So my family doctor increased it to 100mg 3x a day. This has helped reduce my pain, these past couple of days. I still can only eat soft foods. Last night I did have some pain. I asked him about Tegretol because that's what I read about on the internet. But he said Lyrica is what this is treated with.
Thanks for your reply. I agree with you about change but the doctor said Tegrtetol is
hard on the white blood cells and that scares me a little but it seems all the drugs that
work for TN have some bad side effects. Hard to know what to do.
Kc Dancer Kc said:
There is a link on here of our "favorite doctors" you can search till somebody else jumps on here.
If what you are taking is working, I would ask to raise that up just a bit instead of starting over on something else.... Unless what you are on has UNbearable side effects for you, and your pain is mostly taken care of for now, why switch? You have to be the one to make the decision. But many wait until a med no longer works well to switch to another. Keep posting and researching for yourself!
And Welcome!
Hi Paulette.
Thank you for your reply. It may help me make a decision about switching. As all TN sufferers
know, it is really hard to leave something that works fairly well although I am going to have to
increase the dosage soon because I am starting to experience a lot of pain again.
Paulette said:
I just found out I have TN. I was already on Lyrica 50mg x 3 a day for fibromyalgia. So my family doctor increased it to 100mg 3x a day. This has helped reduce my pain, these past couple of days. I still can only eat soft foods. Last night I did have some pain. I asked him about Tegretol because that's what I read about on the internet. But he said Lyrica is what this is treated with.
Hey traveler,
Yes this is all new to me so I've only been treated for several days. I have an appointment with a neurologist so I'll see what he thinks.
traveler said:
Hi Paulette.
Thank you for your reply. It may help me make a decision about switching. As all TN sufferers
know, it is really hard to leave something that works fairly well although I am going to have to
increase the dosage soon because I am starting to experience a lot of pain again.
Paulette said:I just found out I have TN. I was already on Lyrica 50mg x 3 a day for fibromyalgia. So my family doctor increased it to 100mg 3x a day. This has helped reduce my pain, these past couple of days. I still can only eat soft foods. Last night I did have some pain. I asked him about Tegretol because that's what I read about on the internet. But he said Lyrica is what this is treated with.
I and others have posted about 20-30 meds that treat this Lyrica is only one of them
I'm reposting this for you
I feel like I say this every post - but have you ever tried anything topical on your skin to lessen the pain - like a prescription lidocaine patch? -- also comes in cream.
Here is a previous post of mine on meds that work for some here
I hope you get resolution soon---
some meds that help people that have been posted here are
Baclofen
Nortriptyline,
amitriptyline
Methadone
Lamictal
Oxycodon
Tramadol
Klonopin
topirimate,
alprazolam
flexeril
In ER: IV dilaudid + toradol + benadryl (synergistic to enhance effect of other two)
I copied and pasted these from an old post here and saved them on a document.
Some were on one, two, three or more meds - different combos of benzos, muscle relaxants, anti-seizure, sometimes its in the combo
- sometimes you have to research and give your doctor YOUR list of prefered meds/combos to try because you read about them here --- THAT is the sad part-- then they can choose A, B, or C of the ones YOU have whittled it down to - side effects are of course secondary to pain relief most of the time --- but you can google side effects of meds and patients are all over the web saying what it did for them, what it did TO them, or what did not work
I find that askapatient.com is a very good one - as is drugs.com but not many reviewers on there list TN but their are some -- but they DO list side effects regardless of disorder
Hope this helps
all of us have two choices with a rare disease -- do exactly what the doctor says verbatim without question
Or do the research ourselves if they only have one answer
Its unfortunate
keep posting and learning here and also at
http://www.fpa-support.org/2011/02/facial-pain-network-launched-february-2011/
Perhaps you could stay on the tegretol but start on Lyrica to see if it works. If it does then maybe you could tapper off of tegretol.
I went to the neurologist today and he increased my lyrica to 150mg x 3 a day. He says he also treats TN with lyrica. He does want me to see a dentist just to rule that out since I've just been diagnosed. I plan to tell them to be careful because I don't want them to set it off. My neurologist also ordered a MRI of my head.
Thank you for taking the time to post the meds for me. I have tried two different combinations
of topical creams but never been offered lidocaine or lidocaine patches. Am going to ask about them
at my next visit. The other creams have not helped but maybe they (or I ) haven't found the
right combination yet. Will keep trying.
Kc Dancer Kc said:
I and others have posted about 20-30 meds that treat this Lyrica is only one of them
I'm reposting this for you
I feel like I say this every post - but have you ever tried anything topical on your skin to lessen the pain - like a prescription lidocaine patch? -- also comes in cream.
Here is a previous post of mine on meds that work for some here
I hope you get resolution soon---
some meds that help people that have been posted here are
Baclofen
Nortriptyline,
amitriptyline
Methadone
Lamictal
Oxycodon
Tramadol
Klonopin
topirimate,
alprazolam
flexeril
In ER: IV dilaudid + toradol + benadryl (synergistic to enhance effect of other two)
I copied and pasted these from an old post here and saved them on a document.
Some were on one, two, three or more meds - different combos of benzos, muscle relaxants, anti-seizure, sometimes its in the combo
- sometimes you have to research and give your doctor YOUR list of prefered meds/combos to try because you read about them here --- THAT is the sad part-- then they can choose A, B, or C of the ones YOU have whittled it down to - side effects are of course secondary to pain relief most of the time --- but you can google side effects of meds and patients are all over the web saying what it did for them, what it did TO them, or what did not work
I find that askapatient.com is a very good one - as is drugs.com but not many reviewers on there list TN but their are some -- but they DO list side effects regardless of disorder
Hope this helps
all of us have two choices with a rare disease -- do exactly what the doctor says verbatim without question
Or do the research ourselves if they only have one answer
Its unfortunate
keep posting and learning here and also at
http://www.fpa-support.org/2011/02/facial-pain-network-launched-feb...
Boy, going to the dentist is scary. That is how I found out originally that I have TN. I started
getting sharp, stabbing pains in my jaw and face and thought that I had gotten a cavity or
something else. Long story short...after a crown, a root canal and an extraction ( all of the same tooth )
we found out I have TN. The oral surgeon was the one to diagnose it. I would scream so much at the
dentist's office that she was a nervous wreck and she couldn't get the tooth numb. Looking back, I
can't imagine that she must not have suspected TN. Oh well, about three thousand dollars and a lot of
pain later I still had the most incredible jaw and facial pain that a human can endure. That 's when
I got on the internet and started searching and lo and behold, there it was ---TN. I have since seen a
neurosurgeon about possible cyber knife radiation but am unable to lay flat on the table for the mri's
or cyber knife treatment so I am taking tegretol and hoping for the best. Have you had any problem
with infections since you have been on Lyrica? I am not very comfortable with T egretol but it seems
to help but I am looking for a more permanent cure as I have a very demanding life. My husband is now
paralyzed on one side of his body I am his caretaker so I have to be able to drive. A high dosage of any
of these drugs will make it just about impossible to drive so meanwhile I s tay on this merry-go-round
of searching and trying new meds. Good luck at your dentist appointment.
Paulette said:
Perhaps you could stay on the tegretol but start on Lyrica to see if it works. If it does then maybe you could tapper off of tegretol.
I went to the neurologist today and he increased my lyrica to 150mg x 3 a day. He says he also treats TN with lyrica. He does want me to see a dentist just to rule that out since I've just been diagnosed. I plan to tell them to be careful because I don't want them to set it off. My neurologist also ordered a MRI of my head.
Thanks Traveler about the information on your time at the dentist. I said to my neurologist, I'm concerned the dentist would set it off. But he really thought I should rule this out. I plan to tell the dentist office, I need them to be careful.
You do have alot on your plate. I'll pray for you. I haven't had infections. The Lyrica has made me sleepy sometimes I take it, but other times it hasn't. I do take alot of health supplements. I have fibromyalgia so I try to take supplements for this.
Thank you for the prayers. We appreciate every one of them.
Paulette said:
Thanks Traveler about the information on your time at the dentist. I said to my neurologist, I'm concerned the dentist would set it off. But he really thought I should rule this out. I plan to tell the dentist office, I need them to be careful.
You do have alot on your plate. I'll pray for you. I haven't had infections. The Lyrica has made me sleepy sometimes I take it, but other times it hasn't. I do take alot of health supplements. I have fibromyalgia so I try to take supplements for this.
Your welcome traveler. I started getting a streak of light in my left eye from time to time. I was able to talk to the assistant at the neurologist. She said she would tell the doctor.
Recently I began 2oomg/3/day = 600mg of pregbalin. That is the maximum dose. It is causing some oedema in my lower legs, but is curbing the pain.
I have just seen a neurologist who prescribed a small dose of oxycarbazine and a pain killer to reduce the facial pain from all the fans and a/c. I just dropped my Lyrica to 450/day and I am maintaining with the carbamezapine and my pain is greatly reduced. It must be something about the combination.
I am, however, quite tired. If I just sit it is easy to snooze. Because I am 65 that is probably allowable socially, but I hate not having my energy and sensibility (my memory is almost 0) most of the time.
This visit to India also enabled inexpensive CT scans, one of which showed an obvious problem between blood vessels and nerves. It looks like I will have to go back in for another MVD.
Lawrence
Paulette said:
Your welcome traveler. I started getting a streak of light in my left eye from time to time. I was able to talk to the assistant at the neurologist. She said she would tell the doctor.
Do you have any idea what the streak of light is coming from? I have pain shoots
beside my right eye but no lights.
Paulette said:
Your welcome traveler. I started getting a streak of light in my left eye from time to time. I was able to talk to the assistant at the neurologist. She said she would tell the doctor.
I started thinking it might not be from Lyrica. I went to an optham0logist (sp) and he said my eyes were okay. But if they get worse I should come back. I mentioned Lyrica but he didn't say anything about it. It sounded like it was more from age.