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Old 05-26-2012, 07:45 AM #1
Idiopathic PN Idiopathic PN is offline
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Default Gabapentin and Nortriptyline

I was prescribed Nortriptyline by my neurologist yesterday to complement the Gabapentin. I am so hesitant to add more medication that would affect the CNS. As you know, Gabapentin is already making me so drowsy and foggy.

I would appreciate inputs from those who have (had) this combination for their neurological symtoms. Is (was) is beneficial? What are the side-effects in the long term?

Please give me some inputs.

Thank you.
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Old 05-26-2012, 02:36 PM #2
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I've found the gabapentin and nortriptyline combo to be helpful, and I don't recall it making me more foggy than the gabapentin alone. The foggyness seems to go away after a while for me. At least it did--I tried lyrica for a while and then switched back to gabapentin and this time around I'm feeling more foggyness. Give it a shot. In it's class of drugs (with amatriptyline, etc), it has a lower side-effect profile

I started off at 25mg and was eventually at 100mg. The side-effect I wish I'd been told about was constipation. Wow. We're all friends here, right? Have something like Miralax (polyethyline glycol) on hand and be aware what's going on in that department -- miralax takes a few days to take effect. For a while I was asking every doctor I saw, and my sister the pharmacist, if Miralax was okay for long term use and they said it was. The warning on the label about not using for more than a week without checking with your doctor is so your doc could check you out for more serious problems (like an intestinal blockage). But if there's a reason for needing it, like nortriptyline, then there's no worry.

Everybody's different, maybe this side effect won't be one you get hit with, but FYI.

Bottom like for me, though, is that nortriptyline helped for about a year, year and a half, and then I realized my pain levels were back up and I talked with my doctor and got off of it. Maybe I'll try it again, or one of the similar drugs. Maybe I'm ready to brave amatriptyline. A year with a lower pain level sounds good to me right now. I still have a costco pack of generic miralax, so I'm ready.
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Old 05-26-2012, 09:03 PM #3
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Quote:
Originally Posted by nilram View Post
I've found the gabapentin and nortriptyline combo to be helpful, and I don't recall it making me more foggy than the gabapentin alone. The foggyness seems to go away after a while for me. At least it did--I tried lyrica for a while and then switched back to gabapentin and this time around I'm feeling more foggyness. Give it a shot. In it's class of drugs (with amatriptyline, etc), it has a lower side-effect profile

I started off at 25mg and was eventually at 100mg. The side-effect I wish I'd been told about was constipation. Wow. We're all friends here, right? Have something like Miralax (polyethyline glycol) on hand and be aware what's going on in that department -- miralax takes a few days to take effect. For a while I was asking every doctor I saw, and my sister the pharmacist, if Miralax was okay for long term use and they said it was. The warning on the label about not using for more than a week without checking with your doctor is so your doc could check you out for more serious problems (like an intestinal blockage). But if there's a reason for needing it, like nortriptyline, then there's no worry.

Everybody's different, maybe this side effect won't be one you get hit with, but FYI.

Bottom like for me, though, is that nortriptyline helped for about a year, year and a half, and then I realized my pain levels were back up and I talked with my doctor and got off of it. Maybe I'll try it again, or one of the similar drugs. Maybe I'm ready to brave amatriptyline. A year with a lower pain level sounds good to me right now. I still have a costco pack of generic miralax, so I'm ready.
Please tell me after one or one and half year of taking the combo, your pain came back - is it at a degree higher than when you started on it? When you stopped taking them, did you have any substitute medications? I have been reading that medicines, particularly medicines like ours reach a certain dosage that it will stop working in our system. If that happens, then what do we do???? Are you on any medications now?

Constipation now is a problem for me - so I am taking Metamucil. Thank you for the warning.
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Old 05-26-2012, 11:28 PM #4
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Originally Posted by Idiopathic PN View Post
I have been reading that medicines, particularly medicines like ours reach a certain dosage that it will stop working in our system. If that happens, then what do we do????
I'm not sure what you were reading, or if I'm interpreting the question correctly (saw similar mention in Sub-Forum post) or not.

With gabapentin & Lyrica, there are maximum dosages beyond which increasing dosage further adds no further benefit. IOW, they top out, so there's no point in increasing dosage beyond that point. Some people can use these medications for many years without ever reaching those levels; others can reach them within a few years (or less?) Everyone is different with many different causes/types of PN/neuropathic pain.

Gabapentin/Lyrica sometimes do stop working for some people.

In either case above, they try switching to Lyrica, Topamax, or something else. There are many medications being used, and more in the pipeline.
Google: medications for peripheral neuropathy

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Old 05-27-2012, 05:39 AM #5
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There is also another factor:

SAMe is not recommended for those taking antidepressants.
This is because it can raise serotonin. (increasing the production of it).

Granted the nortriptyline is a low dose, but over time it will also act as a mild SSRI antidepressant.

So you will need to consider which one is more important for you.
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Old 05-27-2012, 07:00 PM #6
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What I meant was , one will reach a maximum dosage and beyond it, medicine will not be beneficial anymore. (Sorry, sometimes I may not express my thoughts very clearly since English is not my first language - but I am trying) I guess you put my thoughts appropriately with the phrase "topping it out".

During my consultation with the neuro last Friday, he told me that further tests will not be necessary, unless there is significant development (he avoided using the word "progression") in my condition that will warrant further investigation.

I am so eager to take as much as supplements as possible to at least arrest the nerve damage as early as possible. I would be happy if - at least - my symtoms will not progress - BUT, if it improves, I would be the happiest and grateful person in the world!!! For now, I am grateful that I find this forum and to all the wonderful and caring people.

Quote:
Originally Posted by Dr. Smith View Post
I'm not sure what you were reading, or if I'm interpreting the question correctly (saw similar mention in Sub-Forum post) or not.

With gabapentin & Lyrica, there are maximum dosages beyond which increasing dosage further adds no further benefit. IOW, they top out, so there's no point in increasing dosage beyond that point. Some people can use these medications for many years without ever reaching those levels; others can reach them within a few years (or less?) Everyone is different with many different causes/types of PN/neuropathic pain.

Gabapentin/Lyrica sometimes do stop working for some people.

In either case above, they try switching to Lyrica, Topamax, or something else. There are many medications being used, and more in the pipeline.
Google: medications for peripheral neuropathy

Doc
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Old 05-28-2012, 08:39 AM #7
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English is not my first language
If you hadn't said that, I never would have known!

I often don't express myself clearly/well, and English IS my first language!

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Old 05-29-2012, 12:36 AM #8
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Quote:
Originally Posted by Idiopathic PN View Post
Please tell me after one or one and half year of taking the combo, your pain came back - is it at a degree higher than when you started on it? When you stopped taking them, did you have any substitute medications? I have been reading that medicines, particularly medicines like ours reach a certain dosage that it will stop working in our system. If that happens, then what do we do???? Are you on any medications now?

Constipation now is a problem for me - so I am taking Metamucil. Thank you for the warning.
As I remember, I tapered off the nortriptyline and the pain was somewhat higher, but I don't think I had a rebound effect where it went higher than originally. And then later I switched from gabapentin to lyrica (tapering off of gabapentin with a doctor's advice, and moving onto lyrica). For some people, according to this pain doc, lyrcia works better and they appreciate the better dosing schedule (2x and versus 3x with gabapentin). That wasn't the case for me -- I thought gabapentin worked better, so we tapered me off of lyrica and back on to gabapentin.

I tried to taper off of gabapentin and see how I could do without medication. The best I could do was to use 300 mg 3x/day for a while, but I soon figured out that I was just going to have a ridiculous amount of pain doing that. I went back to 600 mg 3x/day. As time went on, I moved it up to two 600s during the day and 900 at night... Then to 900s also during the day... And now I'm back to 1200 mg 3x/day, which is the max dose. Since this started, I have always been using some kind of medication.

When using nortriptyline, I was also using a bulking agent like metamucil, but also found I needed something like miralax as well. They have different ways of acting that can be complimentary.

I've also found stress-relieving meditations to be helpful (focusing on the breath), massage, and gentle exercise. Acupuncture didn't do much for me, but has helped some people.
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Old 05-29-2012, 04:35 PM #9
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Thank you Nilram for your reply.

My doctor was trying to shift me to Lyrica but I refused since I had some scary negative thoughts when I started on Gabapentin. Since the two medicines work, more or less, the same, I did not want to go through that negative thought process. I was on 1200mg/day just on my 2nd month of neurological symptoms (I am now on my 7th month of PN). On several occasions, I tried to taper the Gabapentin, but everytime I do it, I notice that my symptoms back up. I am trying to stay on this dosage for as long as I can. Though, with this dosage, soometimes it works but sometimes, it doesnt. And during the times that it works, it will give me at least 2-3 hours of relief. That is why, the doctor recommended the Nortriptyline as additional medication.

Did I get you right on your current Gabapentin dosage, is it 1200mg 3x a day (total of 3600mg per day), or is it just a total of 1200mg per day? With this dosage, I would assume you are taking Nortriptyline too....

Acupuncture does not work for me too.
I have all sorts of calming and meditation music....I have also several meditation-guided audio. They help me put to sleep. But I am not sure if its the meditation that puts me to sleep or the bedtime gabapentin

Even how painful my feet are, I try to do the stationary bicycle and very short walk, just to prevent the edema and encourage circulation.



Quote:
Originally Posted by nilram View Post
As I remember, I tapered off the nortriptyline and the pain was somewhat higher, but I don't think I had a rebound effect where it went higher than originally. And then later I switched from gabapentin to lyrica (tapering off of gabapentin with a doctor's advice, and moving onto lyrica). For some people, according to this pain doc, lyrcia works better and they appreciate the better dosing schedule (2x and versus 3x with gabapentin). That wasn't the case for me -- I thought gabapentin worked better, so we tapered me off of lyrica and back on to gabapentin.

I tried to taper off of gabapentin and see how I could do without medication. The best I could do was to use 300 mg 3x/day for a while, but I soon figured out that I was just going to have a ridiculous amount of pain doing that. I went back to 600 mg 3x/day. As time went on, I moved it up to two 600s during the day and 900 at night... Then to 900s also during the day... And now I'm back to 1200 mg 3x/day, which is the max dose. Since this started, I have always been using some kind of medication.

When using nortriptyline, I was also using a bulking agent like metamucil, but also found I needed something like miralax as well. They have different ways of acting that can be complimentary.

I've also found stress-relieving meditations to be helpful (focusing on the breath), massage, and gentle exercise. Acupuncture didn't do much for me, but has helped some people.
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