Hi everybody,
I have been on:
All of these medications made my pain significantly worse. I know they're supposed to do the opposite, so it's pretty confusing.
I've heard that Lyrica is similar to Neurontin. Is it likely to cause the same side effects and reaction as the Neurontin? Also, is Lyrica a tricyclic?
Hi allthewhile11,
I’m sorry you’re having a go with medications. Lyrica is a Pregabalin. So far I’ve had some yucky (that is the nicest word I can think to use) reactions to the other medications. From what I understand it is not really know how exactly lyrica works in blocking pain, but it does block pain. If I’m wrong somebody please correct me. As long as the dosage is built slowly up reactions to lyrica are slight; as this medication is know to have little to low levels of reactions. This not to say you will not have any reactions to lyrica. I hope it works for you.
I am on Lyrica, it worked for a while for the pain, now nothing. It makes me woozy, hard to explain but things just dont look right to me, but it was not as bad as the carbamazapine. I am a hard case with meds though,, I always seem to have all the negative reactions that they list on the instructions. I will say I have more energy on the Lyrica. I would discuss it with your doctor and see if it will help you since nothing else did.
Wendy
Lyrica is not a tricyclic anti-depressant. If you haven't tried one, amitriptyline and nortriptyline seem to be useed the most often and can be very effective.
Hi Crystal,
Thanks so much for your reply. Unfortunately, I'm asking if it's a tricyclic because I can't take anything that is a tricyclic as it gives me really bad tachycardia.
One of the things that Tegretol did was it made me stop breathing. The signal from my brain to my lungs was just not happening. Because of this and the intensity of the problems that arose from the medications I have already tried, I am apprehensive to try Lyrica : / Has anyone here had bad reactions to the medications I mentioned in my first post and had Lyrica be ok?
I had bad reactions to the medications you listed. Teregatol made me liver, and kidneys have serious issues. Trileptal gave me a nasty skin reaction. Sorry I can not remember the name of it. There have been afew other medications that I can not remember but all did some type of unwanted side effect. All of these reactions were caught very early as my neuro and general doctor did weekly blood tests and I had weekly appointments to monitor me while I was trying these drugs. Yes it was a little over the top, but Im glad it was done.
Lyrica has had some side effects for me but none of the more serious ones of other medications have had. I figure I can live with dizziness, sleepiness, and a couple other non serious side effects to manage my pain level. For myself lyrica by its self does not fully make me pain free; I also take narcotics to keep my pain levels low for TN. The one problem with any drug is doctors just can not tell who will or will not have a reaction to any particular drug or class of drugs. I can relate to your fear of trying any new drug after having a nasty reaction to other drugs. The only thing I can tell you is to know what the possible side affects are, have a plan if you do have a really bad reaction, and hope for the best outcome. I hope are have more managble pain or are pain free soon.
I have been on Lyrica for at least five years. It has really helped with my neuropathic pain following the gamma knife procedure. It doesn't take all of the pain away, but it certainly does help. I also take Baclofen during the day as needed and Amitriptylene at bedtime. The side effecst of Lyrica ( unsteady on my feet, drowsy) went away after a few days.
My doctor put me on Lyrica and I had such a bad reaction to it that he had to take me off work. It has been downhill ever since. I have been on various med cocktails and some lasted for a short period of time and then quit. Some just did not work at all. My current cocktail is:
Lamotrigine & Desipramine for the main symptoms (constant 4+ pain scale)
Midrin for the mild face pain/headaches (5-7) pain scale
Dilaudid for severe face pain/headaches (8+ pain scale)
Hydroxyzine to offset the itching with the Dilaudid
Phenergan for the nausea that comes with the pain & side effects (now that the Desipramine dose is going up so is the Phenergan)
Ambien & Baclofen for sleeping
Antivert for dizziness
Hopefully the increases he just gave me will help get it back under control. Good luck to you!
I had the same problem too -- my resting heart rate was 120+. So we added a beta blocker and it's really helped. It keeps my heart under control so I can take amitriptyline, and it even helped me headaches some. I really hated to have to take another med because of the side effect of the first med, but the amitriptyline has helped so much I don't want to give it up.
Next month we're going to add some Lyrica to the mix to see if we can get even better control of my pain. Hope it works well!
allthewhile11 said:
Hi Crystal,
Thanks so much for your reply. Unfortunately, I'm asking if it's a tricyclic because I can't take anything that is a tricyclic as it gives me really bad tachycardia.
One of the things that Tegretol did was it made me stop breathing. The signal from my brain to my lungs was just not happening. Because of this and the intensity of the problems that arose from the medications I have already tried, I am apprehensive to try Lyrica : / Has anyone here had bad reactions to the medications I mentioned in my first post and had Lyrica be ok?
That's interesting about the beta blocker. I was also at 120+ and they told me no more TCAs, ever, for me. No one offered the beta blocker option.
I do take Lyrica, and it's not a TCA, it's more like a newer formulation of gabapentin. It is less effective for me than it used to be, and when I'm on a high dose I have lots of side effects, but at a medium dose it is way better than any other anticonvulsant I've tried. I slur my words a little and am groggy at certain points in the day. I've also gained a little weight. But not as significant as many people report.
I had bad reaction to Carbamazepine, but not cardiac. Hope you have a really knowledgeable doctor, this sounds dangerous.
After side effects on 3 different meds and offered a 4th
Is when I did a year of research on having my MVD because I have/had type I--life is better now
I could not function on them--it's pretty bad when you opt for brain surgery because meds suck huh?
but I would do it again if needed
See if you can get topical or oral lidocane for numbing - works for me and some others!
Lyrica made me "high" and giggly -- I had to quit my new govt. job at the time because I was worthless on it.... don't remember if it fixed the pain much for me
I'll ask about lidocane, thank you!
Crystalv, thank you for the suggestion. Unfortunately I'm already on a beta blocker as well.
I'm not sure of the exact names for the type of TN pain that I have. What we know is that it's caused by a bacterial infection.
The types of pain I experience are burning that feels like that part of my face is on fire, especially around the eye. Very intense ingling on that side of my face. And sharp stabbing pain that feels like someone is putting a hot needle into my face. Occasionally I experience a deep aching on my cheek where the nerve enters the face.
The area where the nerve enters the face often looks white, and the side of my face affected by the TN is red pretty often. Does anyone else get this? It looks like this:
I too am on Lyrica for about4-5yrs. Nothing else worked for me. I had the Stereotactic radiosurgery and it has worked wonders for me. My Lyrica was cut in half, and my neurologist has worked with me extensively to get my meds down to the least I need. I take all my dose of lyrica at night since it does make me loopy & sleepy. I have learned if I take it by 4pm then I can function as a mom the best in the morning as i don't have a "hangover" feeling. Dry mouth, weight gain have been some of my side effects, but they aren't super bad, except the weight gain; I think that also in part to my thyroid being off. The cold and wind are the worst violators in my life. I have been through a really tough patch, but hopefully I am on the better side of it. Depression is huge for me, since it ties into other issues that TN brings with it. I love Lyrica it has been a wonder drug for me. hth. I am so sorry for where you are at in the ugly cycle of TN. May you see a blessing today that you don't expect~~
Hi
I tried tegratol and had an allergic reaction, I took very high doses of gabapentin which didn't work. I now take lyrica, 3 X 150mg per day in combination with tramadol and amitriptylene and they work much better. I have 24/7 bilateral TN and although I am not completely pain free and still have my bad days it is nowhere near how bad it would be without them, at least I now have some quality of life. So lyrica is well worth a go.
Just read the insert and it says that lyrica in not intended to be used alone, but should always be used in combination with other anti epileptic treatment, it makes no mention of being a tricyclic. Hope this is helpful.
Take Care, Sandi x
This is good to know about it not being used alone, thank you! I'm assuming it's ineffective if it's used alone?
allthewhile11 said:
I'll ask about lidocane, thank you!
Crystalv, thank you for the suggestion. Unfortunately I'm already on a beta blocker as well.
I'm not sure of the exact names for the type of TN pain that I have. What we know is that it's caused by a bacterial infection.
The types of pain I experience are burning that feels like that part of my face is on fire, especially around the eye. Very intense ingling on that side of my face. And sharp stabbing pain that feels like someone is putting a hot needle into my face. Occasionally I experience a deep aching on my cheek where the nerve enters the face.
The area where the nerve enters the face often looks white, and the side of my face affected by the TN is red pretty often. Does anyone else get this? It looks like this:
Is your redness on both sides of your face or just the side affected by the TN? X
allthewhile11 said:
I'll ask about lidocane, thank you!
Crystalv, thank you for the suggestion. Unfortunately I'm already on a beta blocker as well.
I'm not sure of the exact names for the type of TN pain that I have. What we know is that it's caused by a bacterial infection.
The types of pain I experience are burning that feels like that part of my face is on fire, especially around the eye. Very intense ingling on that side of my face. And sharp stabbing pain that feels like someone is putting a hot needle into my face. Occasionally I experience a deep aching on my cheek where the nerve enters the face.
The area where the nerve enters the face often looks white, and the side of my face affected by the TN is red pretty often. Does anyone else get this? It looks like this:
I guess it would be ineffective if used alone. Tramadol works alone but works much better in combination with paracetamol, so if I'm having a really bad day I can take both, I don't do this very often though as I am already taking so many meds I am reluctant to take more and since taking lyrica the bad days aren't tooooo bad now. Sandi x
allthewhile11 said:
This is good to know about it not being used alone, thank you! I'm assuming it's ineffective if it's used alone?
Actually I have only just noticed, after 2 years of taking lyrica, that it should always be used in combination with other anti epileptic treatment, I take it with tramadol and amitriptylene, neither of which are anti epileptic drugs, I will check with my pharmacist and/or GP about this asap.
sandi said:
I guess it would be ineffective if used alone. Tramadol works alone but works much better in combination with paracetamol, so if I'm having a really bad day I can take both, I don't do this very often though as I am already taking so many meds I am reluctant to take more and since taking lyrica the bad days aren't tooooo bad now. Sandi x
allthewhile11 said:This is good to know about it not being used alone, thank you! I'm assuming it's ineffective if it's used alone?
When it gets so bad that my teeth start hurting and I want to rip out my entire jaw, I use orajel on the inside of my mouth while dealing with the overall pain in my face with Midrin or Dilaudid.
I also get red patches and occasional swelling and dropping of the corner of my mouth. My nose pretty mmuch stays numb all the time and I have lost significant feeling in several other sections of my face. At the same time of my facial injury, my retina was damaged and my tear duct tore. I am on drops for that to keep from going completely blind. No matter what happens my eye feels like it is being ripped out of my head and my jaw feels like someone is pulling on and trying to rip a tooth out with no novocaine.
Somedays I think that if I cut off that side of my face life would be so much better because it really sucks right now. I hope that the rest of you are having better luck.
allthewhile11 said:
I'll ask about lidocane, thank you!
Crystalv, thank you for the suggestion. Unfortunately I'm already on a beta blocker as well.
I'm not sure of the exact names for the type of TN pain that I have. What we know is that it's caused by a bacterial infection.
The types of pain I experience are burning that feels like that part of my face is on fire, especially around the eye. Very intense ingling on that side of my face. And sharp stabbing pain that feels like someone is putting a hot needle into my face. Occasionally I experience a deep aching on my cheek where the nerve enters the face.
The area where the nerve enters the face often looks white, and the side of my face affected by the TN is red pretty often. Does anyone else get this? It looks like this: