Meds

Since being diagnosed with TN my dr first put me on prednisone to try to decrease swelling and hopefully get the nerve to calm down. Unfortunately that didn’t help.So I am currently on an ssri and a muscle relaxer called robaxin or methocarbamol and that paired with the prednisone still is not relieving my pain in any fashion. So here is my dilemma. I am a single mother of 2 little girls aged 3 and 5 and I am a full-time student with a full-time job as a hairstylist. I am already exhausted as the pain often keeps me up at night. But I am so afraid of the anticonvulsants making me even more tired or worse causing me to not be able to handle my responsibilities. So my question to all of you–my new found friends— is: What meds are you or have you been on? Do/did you like them? Why or why not?

I know each person is different but I would still like to see what everyone has to say.

Well they just increased my dosage of tegretol - its really not doing the job
Keep in mind that I have been cursed with having severe pain from 2 disorders in the same spot which really sucks.
Just when we were starting to make progress on one the other (TN) has shown up.
For pain- Oxycodone and Demerol (demerol will probably be switched to morphine on tuesday)
For migraines - Imitrex ( liked the topomax they had me on before but my insurance wont cover it)
Tegretol for TN - so far not impressed
For sleep - flexiril and nortryptolene
also on fingrin for nausea from all the meds

Really responded well to topamaxx - its classified as an anti seizure med but really helped with the migraines

Deserae,
I think it is better to try the meds for the pain instead of suffering. But I know what you mean about being tired and/or sleepy from them.
I take 3600 mg of neurontin, 450 mg of trileptal (oxcarbazepine), and tylenol 3 (3 pills a day most days). I also take courses of prednisone occasionally (100 mg decreasing over 3 days, to 90 mg 3 days, etc). I take axert for migraines.
I do not have children at home. I’m afraid I could not have taken care of them when I was at my worst before surgery. I could hardly care for myself.
Liz

Deserae,
I’m sorry that you have this condition in the first place. Secondly, being a single mom is hard as it is w/out TN. You’re doing an amazing job, my hats off to you. My neurologist’s assistant told me to try Nuvigil to help counteract the extreme exhaustion from Gabapentin & Clonazepam (spelling?). She said that a lot of the nurses in the office take it to keep awake & focused throughout the day. I haven’t tried the sample yet because I can’t take anything too close to my acid reflux meds. But, she said to take it first thing in the morning before the nerve meds. Perhaps you could check w/ your doctor or even pharamacist to see what your taking now w/ work w/ Nuvigil. I have to be careful w/ my other meds mixing- everything has to be far apart. I don’t like Gabapentin, but I didn’t want to go on prednisone. I take Seasonique BC pills to help w/ my migraines, so I didn’t want the prednisone having a side effect on that medicine’s effect for me. As much as I hate TN, & it’s meds- migraines are one thing I wish I could abolish off the face of the earth after cancer.

NEURONTIN 200MG 3x’s a day- oxycodone for pain along w/ vicotin. I’m a mom of three ages 11,10 &5 also work full time as a social worker for the Dept. Of Education. I totally understand your concern from all aspects. Talk to your Dr. an ask him if you do consider to put you on a low dose at first. wish you the best stay encouraged!

Julie,
I am interested in Nuvigil. I have an appt with my neuro the first week in June. I need help with the exhaustion. Also you said you can’t take anything close to your acid reflux meds. I have developed acid reflux again. I have had it my entire life even as a baby. But I had surgery 5 years ago and it cured it. I think it may be the seizure drugs but I don’t know. The gastro doctor said the stitches could be loose also. I don’t think I want to try the surgery again. I see him in late June. Is acid reflux a common side effect of the TN meds?
Liz

Desarae,
I am sorry you are having pain and trying to work and attend school and raise children. I can’t imagine how hard that is. When I read members’ stories of them crying or screaming in front of their children, it breaks my heart. You really should try other medicines to help with your pain. I hope your pain gets better. Maybe you can lighten your load and not take as many classes until the pain is better.
Liz

I am a mom of 2 kids…9 yr old with special needs and a 12 yr old. I take a very high dose of neurontin, baclofen with it as needed and clonopin every night to help the nerve impulses slow down. All these meds truly help. Ive also had 3 gamma knife surgeries…2 on the right, 1 on the left. They have helped so much! Before the surgeries I was taking tramadol on the bad pain days and methadone on the worst flares and pain days. Since the surgeries, I only take the other 3 meds because I also take low dose naltrexone for MS and Crohns. I function just fine on the 3 (neurontin, baclofen, clonopin at night). It takes time to adjust to the fatigue of the meds but they really help the pain. I also have severe nerve pain all over my body and neuropathies that are helped tremedously by the neurontin and LDN. God Bless You…TN is not wasy to deal with and most people dont get it! I figure this…the more out of pain I am…the more available to my kids I am. Hugs!!! I hope that helps :slight_smile:

oh…I forgot to tell you the amount of meds I take…3600mg neurontin, 10-40mg of baclofen as needed during the day (somedays or weeks I dont need it) and 1-2mg clonopin per night…4.5mg low dose naltrexone. So strange but Ive noticed that the zofran antinausea I take for Crohns actually helps the TN pain too when Itake that. If u start neurontin, they taper it slowly as you adjust so it wont be so tiring. I love baclofen…coupled with the neurontin, its my best TN pain relief :slight_smile:

Hi, in the last three months I have taken neurotin, tegretol, lyrica, topamax, baclofen and lamictal. I have had very little success with amy lasting relief. Currently I am taken Baclofen 10mg 3 x a day and Lamictal 100mg 1x a day. I still have to take Vicodin at night and sometimes during the day. This combo has already started no weaken so may have to switch again. I am a 2nd grade teacher full time and have two kids 12 and 9. I am also taking online classes part time at a major university. So far I am able to function better on this drug combo. I do not have as much nausea or fatigue. It is very hard to function with this condition but reducing the pain is the most important thing! Good luck and my prayers are with you.

I have been taking oxcarbazepin 300mg 3-4 times a day. It helps some - the side effects are nausea, dizziness and it gives me a headache. Long lasting effects are liver and kidney damage :(. I have been taking this for almost 3 months now. I am not a fan of taking any medication. I see my neurologist this week and I am going to push for other options - I would like to try glycerol rhizotomy. I hope you find some relief soon. :slight_smile:

Here is the (probably incomplete) list of meds i've taken over the last 10 years:

Baclofen, lyrica, cymbalta, keppra, prednisone, methylprednisolone, elavil, tegretal, trileptal, klonopin, valium, xanax, neurontin, topomax, depakote, propanolol, phenytoin, caffergot, stadol, toradol, ketalorac, morphine, tramadol, liquid codeine, and norcos.

Tramadol, codeine, morphine, and norcos were the only things that have worked...norco's working the best. Everything else didnt work, gave me lots of problems such as jaundice, balding, and hypoglycemia! I'm going back to my PM dr next week and i'm going to see if i can get any relief from the Oxycontin and Roxicodone combination.

Hello, Deserae!

First of all, your hair is so cute! It makes sense that you are a Hairstylist. I am sure that you are exhausted.

I ran the gauntlet of being a single Mom who lived an hour and fifteen minutes away from a high stress job full of having to communicate solidly with people. A big part of being a stylist is surely communication. I relate and empathize with your plight, which takes almost super human strength to get through.

Here goes: Amitryptiline, Baclofen, Tegretol, Cymbalta, Paxil, Robaxin, Maxalt, Neurontin, Hydrocodone, Norco, Oxycodone, Roxicodone, Xanax, Valium, Oxycarbamazipine, cortizone injections, Methadone, Morphine Sulfate and Neurontin, Antivert, etc. There are more, I believe. I've lost count.

Only Norco, Hydrocodone, Oxycodone, Roxicodone, Valium, Neurontin, Methadone, and Morphine Sulfate haven't served to do anything for my pain. The other meds only either did nothing, made me sleepy, or made me sleepy and scatterbrained as well!

I currently take: Morphine 30 mg. x 3 daily, Roxicodone x 15 mg. x 2 daily (breakthrough pain), Neurontin 600 mg. x 3 daily, and Valium 10 mg. x 5 per day. The Valium is prescribed by my Psychiatrist. (Well, I think maybe the Neurontin helps a little . . I'm not totally sure).

I keep my Psychiatrist informed as to what my PM clinic is doing and vice versa.

I am currently researching where I would like to go back to school, am currently working on writing a book, and successfully raising a teenager and a second grader.

I pray that not one of my healthcare team retires, quits, or moves away. They've given me a fuller life than I have had in years! I live in fear that it will somehow be taken from me, that my life will go back to the terrifying mess it was before I became almost completely, successfully maintained. . . . .only some Level 6 pain in the afternoons. That, for me, is a miracle, for me and my girls!

Unfortunately, my Neurologist seems very clueless about facial pain of any kind. I am trying to find the best one I can for a 2nd opinion, after another MRI, the right kind this time.

I hope you find your "miracle", which eases your pain, and reduces your stress very soon. I know you must be weary.

Hang in there,

Stef

I take 75 mg fentanyl patch

30 mg oxycodone-3 a day max

10 mg valium-3 a day max

just added 100 mg tegretol

Thats more than your brew.

When my neck involves the extremities,nothing works.

You are very brave and the board is amazing.

I hate being a recluse.