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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 14 of 14. This is the beginning of the thread.
Posted by AnnaBanana on April 11, 2001, at 10:09:03
I took Neurontin for 3 weeks (for facial pain) and got up to 900mg per day. Then I got sick and was diagnosed with Colitis so I stopped for 3 weeks. I'm back on it at 1200mg per day for the last 2 weeks. I don't feel any better at all. In fact, I'm in a bad phase right now (which is not unusual - my pain fluctuates). My neurologist told me to stay on 1200mg for 4 weeks and then come see him. I'm just wondering if anyone has any experience in determining when it simply isn't going to work. I don't really want to keep upping the dosage if it's not going to make any difference. Personally, I think I should have felt some improvement by now. Any thoughts would be appreciated.
Posted by Shar on April 12, 2001, at 23:33:04
In reply to It's not working. How do I know when to give up? , posted by AnnaBanana on April 11, 2001, at 10:09:03
This may not be at all useful because I haven't taken Neurontin. For ADs, it's a minimum of six to eight weeks before I will give up, unless side effects are intolerable.
I believe that with ADs, stopping and starting usage can have an effect on how it goes.
I would encourage you to hang in there if possible. Give it a fair trial, which to me would be six to eight weeks.
Good luck,
Shar
Posted by SalArmy4me on April 13, 2001, at 3:29:50
In reply to It's not working. How do I know when to give up? , posted by AnnaBanana on April 11, 2001, at 10:09:03
What side-effects do you have on the 1200 mg Neurontin? {Max is 3600 legally; I took over 6000 mg per day in an interesting story}.
Posted by SLS on April 13, 2001, at 11:44:19
In reply to It's not working. How do I know when to give up? , posted by AnnaBanana on April 11, 2001, at 10:09:03
Hi.
Have you tried one of the tricyclic antidepressants for your pain syndrome? Although Elavil (amitriptyline) has been studied the most for this indication, I have seen others like nortriptyline used. They are usually prescribed in dosages significantly lower than those used for depression. Elavil can be very sedating, a side effect that can be used to advantage as a sleep-aid when taken before bed.
Good luck.
- Scott
> I took Neurontin for 3 weeks (for facial pain) and got up to 900mg per day. Then I got sick and was diagnosed with Colitis so I stopped for 3 weeks. I'm back on it at 1200mg per day for the last 2 weeks. I don't feel any better at all. In fact, I'm in a bad phase right now (which is not unusual - my pain fluctuates). My neurologist told me to stay on 1200mg for 4 weeks and then come see him. I'm just wondering if anyone has any experience in determining when it simply isn't going to work. I don't really want to keep upping the dosage if it's not going to make any difference. Personally, I think I should have felt some improvement by now. Any thoughts would be appreciated.
Posted by SalArmy4me on April 13, 2001, at 11:52:48
In reply to Re: It's not working. How do I know when to give up? , posted by SLS on April 13, 2001, at 11:44:19
True. My father prescribes low-dose Elavil at bedtime for chronic headaches.
> Hi.
>
> Have you tried one of the tricyclic antidepressants for your pain syndrome? Although Elavil (amitriptyline) has been studied the most for this indication, I have seen others like nortriptyline used. They are usually prescribed in dosages significantly lower than those used for depression. Elavil can be very sedating, a side effect that can be used to advantage as a sleep-aid when taken before bed.
>
> Good luck.
>
>
> - Scott
>
>
> > I took Neurontin for 3 weeks (for facial pain) and got up to 900mg per day. Then I got sick and was diagnosed with Colitis so I stopped for 3 weeks. I'm back on it at 1200mg per day for the last 2 weeks. I don't feel any better at all. In fact, I'm in a bad phase right now (which is not unusual - my pain fluctuates). My neurologist told me to stay on 1200mg for 4 weeks and then come see him. I'm just wondering if anyone has any experience in determining when it simply isn't going to work. I don't really want to keep upping the dosage if it's not going to make any difference. Personally, I think I should have felt some improvement by now. Any thoughts would be appreciated.
Posted by AnnaBanana on April 16, 2001, at 9:42:39
In reply to Re: It's not working. How do I know when to give up? , posted by SLS on April 13, 2001, at 11:44:19
Thanks Scott. I have tried Elavil and Cyclobenzaprine (which it a muscle relaxant that is structually related to the tricyclic antidepressants). The Elavil had no effect at all and the Cyclobenzaprine didn't really help but made me feel extremely foggy and totally bizarre psychologically. I think I was on a really high dose though according to another doctor I talked to. I can't remember how high it was. Thanks for the info.
Anna
> Hi.
>
> Have you tried one of the tricyclic antidepressants for your pain syndrome? Although Elavil (amitriptyline) has been studied the most for this indication, I have seen others like nortriptyline used. They are usually prescribed in dosages significantly lower than those used for depression. Elavil can be very sedating, a side effect that can be used to advantage as a sleep-aid when taken before bed.
>
> Good luck.
>
>
> - Scott
>
>
> > I took Neurontin for 3 weeks (for facial pain) and got up to 900mg per day. Then I got sick and was diagnosed with Colitis so I stopped for 3 weeks. I'm back on it at 1200mg per day for the last 2 weeks. I don't feel any better at all. In fact, I'm in a bad phase right now (which is not unusual - my pain fluctuates). My neurologist told me to stay on 1200mg for 4 weeks and then come see him. I'm just wondering if anyone has any experience in determining when it simply isn't going to work. I don't really want to keep upping the dosage if it's not going to make any difference. Personally, I think I should have felt some improvement by now. Any thoughts would be appreciated.
Posted by willow on April 16, 2001, at 20:03:50
In reply to Re: Tricyclics » SLS, posted by SalArmy4me on April 13, 2001, at 11:52:48
Anna
What is causing your facial pain? If it is muscular you may want to try baclofen, which is a muscle relaxant. I have used flexeril and found all it is good for is knocking me out and over time it lost this effect. The baclofen takes a while to start helping, but I haven't had any severe spasms since starting it.
Willow
Posted by AnnaBanana on April 17, 2001, at 13:18:14
In reply to Facial Pain ..., posted by willow on April 16, 2001, at 20:03:50
Hi Willow,
Over the past 4 years, I have heard various theories from doctors, chiropractors, dentists, phsyio, etc. There is definately a muscular component so I could try the baclofen. Do you have facial pain? My is constant but varies in degree. I've had an MRI of my neck and an X-Ray of my TM joint but nothing shows up. I don't have any clicking or locking of the jaw just pain in the face, neck and shoulder.
Anna
> Anna
>
> What is causing your facial pain? If it is muscular you may want to try baclofen, which is a muscle relaxant. I have used flexeril and found all it is good for is knocking me out and over time it lost this effect. The baclofen takes a while to start helping, but I haven't had any severe spasms since starting it.
>
> Willow
Posted by willow on April 17, 2001, at 20:35:11
In reply to Re: Facial Pain ..., posted by AnnaBanana on April 17, 2001, at 13:18:14
"Do you have facial pain? My is constant but varies in degree. I've had an MRI of my neck and an X-Ray of my TM joint but nothing shows up. I don't have any clicking or locking of the jaw just pain in the face, neck and shoulder."
Yeah, I do! Mine use to be constant but since I've been taking the baclofen daily I've noticed that it has been gone for periods during the day. I didn't take the baclofen for two days and it started to come back. I've kinda given up trying to figure out what causes it, though I suspect some of it has to do with my ear. It seems to be better if I can keep it covered and dry. A bath can set it off.
But the shoulder-neck portion is muscular and the baclofen helps this. I've done chiro, physio, relaxation, gentle stretching, blah blah blah, and nothing seems to help except for the baclofen. Without it I wouldn't be able to type etc. The flexeril was useless. What was your opinion concerning the flexeril? I find it just makes you drowsy. The baclofen over time actually helps though it's not fast-acting. I use to get awful cramps in my throat but haven't since starting the baclofen.
Has yours gotten worse over the years?
Willow
Posted by AnnaBanana on April 18, 2001, at 11:13:40
In reply to Re: Facial Pain ..., posted by willow on April 17, 2001, at 20:35:11
> "Do you have facial pain? My is constant but varies in degree. I've had an MRI of my neck and an X-Ray of my TM joint but nothing shows up. I don't have any clicking or locking of the jaw just pain in the face, neck and shoulder."
>
> Yeah, I do! Mine use to be constant but since I've been taking the baclofen daily I've noticed that it has been gone for periods during the day. I didn't take the baclofen for two days and it started to come back. I've kinda given up trying to figure out what causes it, though I suspect some of it has to do with my ear. It seems to be better if I can keep it covered and dry. A bath can set it off.
>
> But the shoulder-neck portion is muscular and the baclofen helps this. I've done chiro, physio, relaxation, gentle stretching, blah blah blah, and nothing seems to help except for the baclofen. Without it I wouldn't be able to type etc. The flexeril was useless. What was your opinion concerning the flexeril? I find it just makes you drowsy. The baclofen over time actually helps though it's not fast-acting. I use to get awful cramps in my throat but haven't since starting the baclofen.
>
> Has yours gotten worse over the years?
>
> WillowHI Willow,
It sounds like baclofen is definately something I should look into. I'm going to ask my neurologist about it next week. How much are you taking and how long did it take to start working?
I also have sensitivity around my ears. I can't go outside in the cold or even if there is a cool wind unless I have my ears and the area below my temples covered. I recently went for a 15 min. bike ride on a warmer day but it was obviously too cold for me as I was in severe pain after for several hours. The heat doesn't bother me though, nor does the pool.
I've also tried everything - chiro, massage, physio, acupuncture, pilates exercises, herbs, medication.
I've tried Flexeril (Cyclobenzaprine) and it made me very tired and once I got up to a high dose I started to feel out of control and paranoid. No one bothers to tell you that it can cause "abnormal thinking and dreaming, hallucinations" among many other side-effects.
My pain kept getting worse initially but it has gotten somewhat better over the last year or so (or maybe I'm just coping better, it's hard to tell).
I think my new chiro has helped somewhat though. I've had 2 fairly good periods of about 2 weeks in duration since I started in January. I'm also getting my second bite plate. It's a new type of plate that molds to your mouth. You run it under hot water every night to soften it and them put it in.
I'll let you know if anything helps.
Anna
Posted by willow on April 18, 2001, at 14:28:14
In reply to Re: Facial Pain ..., posted by AnnaBanana on April 18, 2001, at 11:13:40
Anna
I started at 5mg and was suppose to take it three times a day, but I only take it at bedtime. It dose cause a little tiredness, yet not anything substantial. Now I take 10mg at bedtime and this seems to help. I think you may have to wait a month before you really notice that it is helping.
I think it is wind or drafts that affect my ear. My mom use to always say this and I pooh-hooed her, but I guess she was right. She too has the ear problems.
What is the mouth thing for?
Willow
Posted by AnnaBanana on April 18, 2001, at 15:50:07
In reply to Re: Facial Pain ..., posted by willow on April 18, 2001, at 14:28:14
> Anna
>
> I started at 5mg and was suppose to take it three times a day, but I only take it at bedtime. It dose cause a little tiredness, yet not anything substantial. Now I take 10mg at bedtime and this seems to help. I think you may have to wait a month before you really notice that it is helping.
>
> I think it is wind or drafts that affect my ear. My mom use to always say this and I pooh-hooed her, but I guess she was right. She too has the ear problems.
>
> What is the mouth thing for?
>
> WillowThe bite plate is for teeth grinding (bruxism) or clenching. I know I don't grind my teeth but I may clench during my sleep. Most people with facial pain either clench or grind. You can find info. on it if you search for TMJ in a search engine. The dentists all claim that the problem is all due to grinding/clenching which causes a misaligned bite - of course we know better but it may be part of the puzzle.
Anna
Posted by JaneB on April 18, 2001, at 16:36:54
In reply to Re: Facial Pain ..., posted by AnnaBanana on April 18, 2001, at 15:50:07
Years ago I had excruciating pain on one side of my face, ear and neck. It would come and go without rhyme or reason. It was diagnosed by a neurologist as Trigeminal Neuralgia and treated very successfully with Periactin. I may be way off base but thought I would tell you my experience.
Jane
Posted by AnnaBanana on April 19, 2001, at 12:43:19
In reply to Re: Facial Pain/Trigeminal Neuralgia..., posted by JaneB on April 18, 2001, at 16:36:54
Thanks Jane. I've read about that condition. I'll ask my neuro about this as well.
Anna
> Years ago I had excruciating pain on one side of my face, ear and neck. It would come and go without rhyme or reason. It was diagnosed by a neurologist as Trigeminal Neuralgia and treated very successfully with Periactin. I may be way off base but thought I would tell you my experience.
> Jane
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