posted
I started neurontin three days ago, just 300 mg once a day to start. I'm supposed to ramp up to 1200 mg 3x daily over the next few weeks.
The first night I took it, slept really well (I'm also already on ambien and soma for sleep, as I otherwise wake up, bolt awake and can't go back to sleep at 2ish every night).
When I woke up the next day, I thought I'd found an answer to the pain. It's hard to explain, but it just felt like my body was more able to relax in a way it hasn't in years (I usually always feel as if all my tendons are inches too short and all my muscles are permanently clenched). My hands and feet were less painful, tingly and swollen, joints felt less painful and 'congested'. I had more energy than usual.
The second night, got only about 4 hours sleep and felt as lousy as usual the next day. Last night, ditto, and I feel like I do on my worse days today (i.e., lots of pain, general flu-like feeling, very tired, vaguely nauseated).
How come that tiny taste of improvement, and then back to square one, or worse?
I know it's a completely different thing (treatment v. pain relief) but I had a similar incident when I started my six-month course of IV rocephin two years ago. Very early on, I had one day when I thought, wow, this is going to be it! and then back to bad or worse for good the next day. My LLMD finally took me off it after I showed no improvement (and losing my gallbladder).
I also take ultracet and vicodin daily for pain, and have for almost 3 years.
I feel, and have for a while even before adding the neurontin, that I'm taking a whole lot of scary Rx to no avail (though I would not be functional w/out the pain meds).
(as background, sick 6 years, undiagnosed 2. Been on many oral abx as well. I have been tested multiple times for lyme and coinfections: one positive lyme from MDL, negative lyme urine pcr from Igenex, negative coinfections Quest and MDL. I'm currently waiting for my first blood lyme and coinfection results from Igenex.)
Sorry so long....Not sure what I'm asking .. just general feedback?
monkeyshines
Posts: 343 | From Northern VA | Registered: Oct 2004
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posted
this is just me, but i took neurotin before dx (but sick) it did not help w/ pain, masked symptoms, made me very tired and sad and made the docs feel cool (this was four years ago) for using such a cool new drug.
so neurontin did not work for me--at all.
best of luck for you though, i know it works for some people but don't think it is odd if it doesn't work for you. I know plenty had the similiar expereinces to mine.
jif
Posts: 208 | From Santa Fe | Registered: May 2006
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posted
I would give it more time. Neurontin takes awhile to work. You may need the higher dosage for it to work for you.
Will your dr consider trying meds for babesia even with a negative test?
I would not give in until trying that! It could be the key to your getting well.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96238 | From Texas | Registered: Feb 2001
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I agree with Lymetoo that you need to give it more time, also that you may not see good results until you are on a higher dose.
I take gabapentin (generic) with only 300 mg, twice a day and at night I take 1400mg. I also use Trazodone, tramaadol, clonazepam, and cyclobenzaprine at night. I need the entire combo to get good sleep.
Gabapentin can make you drowsy at first, but I've found that goes away after a few days. Of course, that's what you want during the day, but not at night.
Hang in there and see how it goes when you increase the dosage before giving up.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
The effect Neurontin has on pain does not occur until you reach very high doses. So I wouldn't consider it not to work until you are at the full dose for a while.
I never made it that high because it made me too fatigued. But I believe that is because I was on Flexeril and my system couldn't handle both of them.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Thanks, all. I'm going to stick it out and get to the higher dose before jumping to conclusions.
Lymetoo, I did to a longish course of artemesia a while back. Because I was treatment resistant, my doc also thought it was worth considering babs without a positive. I still haven't ruled it out (I haven't ruled anything out!).
monkeyshines
Posts: 343 | From Northern VA | Registered: Oct 2004
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quote:Originally posted by monkeyshines: Lymetoo, I did to a longish course of artemesia a while back. Because I was treatment resistant, my doc also thought it was worth considering babs without a positive. I still haven't ruled it out (I haven't ruled anything out!).
Good!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96238 | From Texas | Registered: Feb 2001
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you are taken ALOT of pain meds you took more then I did before and after my big back surgery.
I say you can get addicted to pain meds and need more when you may not.
I was on Nerontin too. that was for nerve pain.did nothing so I stopped
Try a good holestic Dr.
and for sleep try going for a deep tissue massage it will detox all this stuff in your body-out and help ease your tension
I did that it helped.. A good holestic Dr. can do wonders. My gallbladder is shot after 3 months of Rocephin and I think I need more because I have neurologic lyme in late stage attacking Central nervous system.........
But I find after being off of everything for almost 3 weeks you see where your body stands.
you may need to detox that's alot of pain meds in my opinion.
good luck
-------------------- I feel like their's corruption with some Doctors about lyme disease Posts: 23 | From Westchester NY | Registered: Oct 2006
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posted
wentworth, I've been seeing a holistic doctor, for the past two years. As far as massage goes, I'm in waaaaay too much pain to have anyone touch me like that, even with the lightest massage. When I tried, I flared badly for almost a whole week from one 30 minute session with a highly trained practitioner.
My NP placed her stethoscope on my upper back today, and I told her that it caused pain into the top of my head and down into my hand.
I'm always astonished when other lymies say they get massage ... it's just another reminder that we're all affected so differently with this disease. Unfortunately, my brand of lyme is extreme all over pain, and I haven't found any treatment yet (including 8 straight months of weekly or biweekly cranial sacral therapy, homeopathy, muscle testing, amalgam removal, detoxing, and much more) that has helped.
The good news is, that I've been able to keep my dosages steady by just toughing out. That doesn't mean I don't want off these meds, believe me, I do! And then I'm going to have to detox like mad.
monkeyshines
Posts: 343 | From Northern VA | Registered: Oct 2004
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My 17 yr old dd just started generic neurontin two days ago. 300 mg at night for a few nights then 600 mg. Also taking 10 mg generic flexeril. Both say 1/2 to 1, patient input is important in the dosaging. She also had a first great night. Still sleeping so will have to let you know about night two.
Don't know about this generic drug, but I do know my brother was able to get his insurance co to pay for a very non-preferred drug ($150 copay) because there was a "comprable" generic available ($5 copay) available but he couldn't use it. His Dr was able to prove to the ins co that the one molecule different was more important to my brother than your average person. Not saying that would work for all drugs, just pointing out that generic is not always equal just comprable.
Please give it a chance, or at least call your llmd. I think the more chemicals we put in the mix the more unpredictable they become. Some drugs effect the levels of other drugs in our system, change one and actually change the level of others in your system without changing the dosage. Go figure! Not all Doc's know all about this either! Maybe your llmd would consult with a pharmacologist if he/she's not one.
Let's us hear how it goes.
MommaK
Posts: 242 | From Mississippi | Registered: Oct 2006
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