Gabapentin Issues, what next?
 

Well the gabapentin worked miracles for me the first 10 days I took it. I went to bed at 10pm woke up 7am and feet didn't even hurt when I woke up. Then like a switch it quit helping, literally, one night it quit.

I call doctor, she said take 3 pills instead of just two. So I have for the last week and still nothing, matter of fact it seems to be working less and less each night that goes by. I haven't bothered to call her yet, it's been 5 days since she said to up it to three.

Do I bother to call? I have an appointment like May 15. I have a feeling she will say up it to 4 pills, though I do not have enough left to do that.

Any ideas what her next step might me? Will she keep staying with gaba and upping it or want to switch??? Is it normal for gaba to work great then stop all together? I know it is normal to need to keep upping it but is this a normal pattern to quit so fast?

I have heard you can build up a tolerance to it and need to increase the dose but that does seem rather quick to build a tolerance. Is gabapentin the only medication you are on? My doctor has me on nortriptyline as well.

If it's really bothering you then you may want to call and see if she wants to up your dose or add another med as well.

I called and left message but she is out until Monday. I thought it was fast too. I am not on anything else. Thanks for your reply.

Are you still just taking it at night...instead of throughout the day?

I would consider trying it as prescribed. It's not designed to be taken just at night, so you may have been only reaping the benefits of the sleepiness side-effects and not the entire medicine.

It IS prescribed that way. I am taking it exactly as she told me to take it. I guess since my pain is not during the day it starts at 6pm like like work give or take an hour.

Her nurse just called in a scrip for cymbalta but I am to scared to take that.

Maybe she intended to keep you at once a day for the 3 weeks until your next appointment. I have only heard of a (literally) couple of people that only take it once a day. Most take it 3 times a day for PN. It can (and is recommended) to be slowly increased until an appropriate dose is achieved and you have good pain relief. This can take a couple months, not weeks.

It really sounds like the sedation side-effect is wearing off and the dose it not high enough for your pain relief. Increasing from 2 pills a day to 3 may only be significant if the pills are 300mg each. If they are 100mg each, then the increase may not be noticeable, now that the sedation has worn off.

Like I have said before, I don't know much about EM...but is neurontin something they use for treatment of this condition? If so, are you taking the typical dose for EM (compared to what others on the EM forum report)? I say this, because neurontin may not even work for you if this is, in fact, EM and the treatment is something else...or more neurontin than what you're getting.

Your follow up appt should be coming up soon, right? I'd continue to keep a journal of your dosage and pain to review with her so the decision can be made to try something else or increase the dose.

Sorry, I don't have better answers for you.

**After hearing about Hopeful's experience with Cymbalta,I'd be scared too. I could not take Cymbalta...from the start. Horrible experience...but others have found it to help. Everyone is different.

The pills are 300 mg so I am taking 900mg a night.

I may try to get her to do more gabe instead of cymbalta.

EM is much like PN, everyone is different with what works, and EM is more rare than PN so very few doctors even know what it is or how to diagnose it let alone treat it. Not much is known about EM, my doctor does not even know what it is, not that she will admit that. She glanced at the paper I handed her and said, no, you have PN. I think most EM sufferers are on trial and error even more than PN. Most drugs being used are the PN drugs since doctors dont know how to treat it. Some work some dont.

Thank you for at least offering up your opinion, I appreciate it.

I just called pharmacy, cymbalta is $300 no way am I doing that.

Stacy, I had a similar experience of it working and stopping after a short time, reaching these plateaus for a short time and having to go to the next. Eventually most folks reach a therapeutic plateau that works for them. For me it was 1800mg.

One thing to note about Gabapentin is it absorbs fast, brings your blood level up fast, but also drops off rapidly.

I tried 4 pills and still nothing. But I only did it for two days, since there was no improvement at all. Someone suggested I take it day and night but my doctor has not suggested that. She wanted me to get cymbalta but I wont switch to that.

I dunno what is next.

I was likewise thinking taking it just a night seemed a little unusual, but thought maybe it might work. I might suggest the same day and night schedule because that is how I took it.

Of course, I had pain day and night so it made sense in my case.

I would say needle your doc about whats next. If they are only going to bump you up, there should be no reason to wait for an appointment like that.

Stacy, I wonder if she'd be willing to prescribe a starter dose of Nortriptyline. I started on just Nortriptyline but added Gabapentin when the PN pain spread from legs to arms, and the combination is still (eight months later) keeping the PN pain under control. And I guess it helps with EM too. I've read that the combination of Gabapentin and Nortriptyline (or probably Amitryptline) is better than either drug alone.

Yes--that's why I spread out my Gapentin (smaller doses three or four times a day).

My PITA doctor got pissy when I left message I could not do cymbalta so her nurse just called in another RX for more gaba and said we would "deal with it" when I come to see her next week.

Leaving me stuck and in pain. SO, on my own I decided to take 1 at 11 am and another at 6 pm and 2 before bed, around 11 pm. Each pill is 300mg. She had been having me do 3 at bed time. So whatever. This new dosing is helping me MUCH MORE. Why she couldn't just suggest it, well, nevermind, I know why. She literally disliked me just because I take lots of supplements. Not sure what will happen when I go next week. She will get all offended that I decided to does myself, but she certainly didn't care enough to try and help me.

This is working better but not great, still cant get up a lot. Still cant leave my house. Still use water but less frequently, get more sleep.

Definately more side effects. :( But this is my life now, as you all can relate. I accept it.

I'm not surprised the dosing you are doing now is helping. Actually, that is the 'typical' dosing, I thought (3 times a day). The half-life is like 5-6 hours, so 3 times a day seems appropriate for better/consistent coverage.

I hope your visit next is more productive then the first one. I'd ask her some pointed questions (particularly why she's dismissing EM), but in the next breath, I'd give her an opportunity to tell you what the long term approach and plan is and where she sees this going.

Stacey, I can't offer more then what has been said already. I just want to say hang in there! Hopefully, you will find the right dosage and treatment to at least lower your pain.

In the mean time know you are in my thought and prayers.

I went to my dr today. God answered my prayer and she was like a different woman, literally, kind, sweet, NICE, open to suggestion...PRAYER WORKS. amen

Even hubby said the change was night and day. She even looked at and READ the EM info and agreed I probably had it as a secondary condition. However, she said treatment remains the same either way, which is somewhat correct and I knew that, though there are other options. She said the magnesium is simply over the counter choice, which I was not sure of, I thought Dr Cohen used stronger stuff but I didn't know.

The said no to gout in her opinion, which I agree, my symptoms do not present as gout. She did draw blood to test for heavy metals at my suggestion, though I believe hair testing is better, this was my only option. She does not feel the need for any further testing, which surprised me since we have not tested for hardly anything. In her opinion, it seemed she felt the options are not anything reversable so why test.

Treatment is remain on gaba until it wont work anymore, raising to the limit. Which may be sooner than later, since my muscle pain is bad. She was surprised by that but I seem to have issues with muscle pain as even micardis did it to me and it was a rare side effect for that med also.

She is calling in a compounding cream with gaba, nortriptline, and lidocane.

She also suggested ultra sound therapy.

After that she wants cymbalta or lyrica. I kept silent on that.

One day at a time. One hour at a time. One moment at a time.

The compounding cream is a good idea. See, I suggested to you to give her a chance....It is a good sign for you that she looked this up and understands it. Some doctors will do this and others refuse.
The ones that refuse to look stuff up, should be fired ASAP. (they have closed minds and big egos).

But this one is working with you and your problems are complex and not easy fixes ...so you have to be patient.

Yes. The compounding cream was my idea also.

It is very wise to go in knowing your stuff. That would be my suggestion to any new people going to a doctor, know your stuff. Know what you want, why, what tests you want to do, everything.

It was my idea to do gaba through the day, my idea for heavy metal test, my idea for a compounding cream, she seemed surprised I knew to ask for this and said yes, that is a good idea, and most surprising, she did NOT mention one single word about that $3,000 test I was supposed to do. I was waiting for her to ask but she didn't. I can't believe she wanted me to do a test that cost that much and then she didn't even ask if or why I didn't do it, nothing. Guess it was not that important, just MY money. :rolleyes:

The only idea she had was ultra sound which I can't imagine would help and if so, temporary help that costs too much to keep up.

I feel it was a better appointment in that she was compliant and nice but that is about it. I am very surprised she has no other tests to run to continue to find out what exactly I have or what might be causing it. It seems she doesn't really care as pain meds are the only answer...again, something I have said here before...why spend all the time and money when it doesnt seem to matter in the end.

I'm glad you had a better appointment and interaction with the doctor. I too am surprised she mentioned the expensive ultra sound but no mention of ANY testing to find the cause.

Did she at least increase the gaba to something other then once a day, so you get better coverage?

Also, did she have a cap on the dose of gapa that she'll go to before quitting?

I'd say give this (and her) a try. At the next visit you can bring up the subject again about testing (like skin biopsy). She may have a different opinion that day.

She said the cap is 4,000 but I dont think I will make it there, my muscle pain is getting worse. I meant to ask her what to do about it, after I told her about it and she was surprised she never said anything again other than if I cant handle side effects I will have to quit.

Yes, she said I can increase as I need to, just call her for increases. She wrote a new script and said what I am doing is working keep doing it.

I am scared it may be a problem for me for many drugs, and I dont know what to do. :( My left thigh feels like someone punched me, it is deep muscle pain in one spot.

I do not want a skin biopsy, dont feel it is useful, but she seemed open to testing if I suggest I want it, just not sure what to suggest. Why does it always feel like I am my own doctor. :(

Right now my focus is stuck on this darn muscle pain.

Also, do you all get handicap parking stickers?? I really could use this for myself but feel silly asking for it since I do not appear handicap.

Very happy to hear you are using (and she's okay with it) the gaba over the course of the day instead of just at night. It really is the typical dosing.

May I ask why you oppose the skin biopsy? It is the ONLY test to look at small fibers. EMG and NCS cannot look at these. Not to mention that the skin biopsy is a very effective test, that can also be done over and over to gauge progression or improvement of SFN. It checks not only density, but condition of the fibers them self.

I'm not talking about a sural nerve biopsy...that you should stay away from for sure. The permanent damage isn't worth the info gained. But skin biopsy is very minimally invasive, leaves has no ill effects, and provides detailed info.

I do have a handicap tag...have had one for years. I have both cardiac and balance/walking issues, but to look at me (other then my cane), I don't "look" handicapped...so I have gotten some stares. I can only imagine you trying to walk on your swollen painful feet...so I would ask her about her considering you for one. The worst she can say is NO.