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Annette or anyone with Neurontin experience
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bren_bren posted:
I've asked my prolo doc to prescribe Neurontin to help w/ my nerve pain & hopefully help me to titrate narcotic med's. His nurse called in 1800 mg's daily but my past experience w/ this med makes me think a slow increase is in order. I told the nurse this & she suggested I ask my pain management doc. It's the weekend and I don't want to wait 'till next week to talk to my doc's office. Any suggestions on how to start this? I asked for 300 mg capsules so I can increase the dose slowly. I also want to know how long before it should work? I'm desperate for relief, as opioids aren't touching this pain. Thanks for your time, B
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annette030 responded:
Hi, Bren-Bren

You know I don't think anyone should adjust their dose of anything without talking to their doctor first.

That said, my doctor started me on 300 mg. a day for one week, then increased it by 300 mg. for one week, etc. I went up to 1800 mg. per day over six weeks, then backed off to 800 mg. per day taken in a single dose in the evening. I felt very lethargic all day on the 1800 mg. dose. All of this was done with my doctor's guidance.

Talk to your doctor as soon as you can.

Take care, Annette
 
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Gladtobeliving responded:
Even when my Doctor has started me on a large dosage of medicine, I will start with a smaller dosage just to make sure it is a medicine my body can tolerate and if I can handle it, then I will increase the dosage gradually up to the Doctors recomended dosage...but that is just me, please don't judge that for yourself. I tried neurontin and it didn't do anything to help my neuropathy pain, neither did Lyrica, and i increased the dosages to the maximum, with Doctors permission and they still didn't do anything for me.
You said pain medicine didn't help you! I was on Hydro-codone for back pain when I first started dealing with neuropathy pain. After a while the Hydrocodone just didn't do anything for my pain. At the recomendedation of a friend I tried Ocycodone instaed of Hydro and yeah, It did help and so far has been the only thing that has helped with my severe pain. Even Hydromorphone didn't help me. I haven't tried Oxymorphone but apparently the Oxy med's seem to help while the Hydro meds don't. Must be a different nerve pathway or something , I don't really know, i only can share what has helped me. So, if you haven't tried the Oxy meds, then maybe that will help you. Good luck with dealing with your pain, I fully understand the severity of the issue!
 
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KatMit524 responded:
It's really hard to control nerve pain with narcotics. you've been given some great tritrate advice for the Neurontin. Just as an add on if the Neurontin doesn't help there is also Lyrica, Neuroveen, and Cymbalta, these all work well for nerve pain in different ways. If you decide to do your own starting dosage and tritrate up to the 1800mg of Neurontin, definitely call your Dr. tomorrow and get his advice on it.
 
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bren_bren responded:
Thanks for the input guys. I hope it ends up helping overall. I know that opioids don't do much for nerve pain, but they do help w/ soft tissue pain. I'm just hoping the prolotherapy will help w/ the latter so I can come down off of the narcotics. So far, I've seen very little relief & an increase in nerve pain. It most likely is only temporary. We will see. Thanks for everyones input. B
 
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annette030 replied to bren_bren's response:
Best of luck to you!!

I had an increase in hip/leg pain and finally spoke to my doctor about it. She said I could increase my methadone to 10 mg. three times a day. I was taking 10 mg. at bedtime and 5 mg, twice more a day, so her thought was to increase it by 10 mg. per 24 hours. I declined and increased it 5 mg. once more per day. She gave me permission to use 10 mg. three times a day if I needed to. She is great, she is always looking out for my pain, and wants it to be as low as possible. I have found that methadone works somewhat better for nerve related pain that the other opioids. I found I was using far less BT meds almost immediately. It is the nurse in me, but I do keep very good written records of all the pain meds I take.

That and the gabapentin generally does me fine, lol.

Take care, Annette
 
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KatMit524 replied to annette030's response:
Methadone does work well for some types of pain as opposed to other narcotics. Just be aware that it has a very long half life, so be careful when increasing it. You'll think it's not strong enough and then it will catch up to you. Take care,

Kat
 
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annette030 replied to KatMit524's response:
I truly believe in the "start low, and increase slowly" plan of attack with this med. I don't believe it is something to increase on your own, "if it kind of works, just take more" is NOT a good plan with this drug. This is how deaths happen with this drug.

I am so glad that someone else speaks out on this drug also.

Take care, Annette
 
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bren_bren replied to annette030's response:
That's interesting what you and KatMit say about Methadone. I was offered that med early on in chronic pain treatment and, for some reason, my instincts told me not to take it. I wasn't aware of the half-life being too low and was naive to opioids altogether-I am pretty convinced I would have died. I had a different PM and he never explained the severity of any of the strong opioids and I interpreted "as needed" in an entirely different way.

It does need to be stressed that taking more Methadone than prescribed is fatal. I'm glad you two brought it up. -B
 
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annette030 replied to bren_bren's response:
I really like the methadone. I had extensive experience with using it for patients with addiction problems many years ago, but not for pain management. It takes care of my pain at a low dose, and is really cheap.

I asked my doctor for it, as a long acting, scheduled opiate. I do not take it "as needed", it is not that kind of drug. I started with half of the dose my doctor originally prescribed and worked my way very slowly up to what worked well for me.

Like I said, I keep very careful records of all my opioid use, and the frequency of my BT meds decreased immediately on increasing my methadone dose, even at only 5 mg. per 24 hours.

I have to repeat though, do NOT change the dose or frequency on your own. TALK to your doctors FIRST.

Take care, Annette
 
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Anon_160307 replied to annette030's response:
Fentanyl Transdermal has been the only opioid that has helped with my nerve pain somewhat and I have tried Morphine and also Oxymorphone as long acting medications go. That's because it is most potent opioid on the market

When I was started on Gabapentin, I was told to take one 300 mg capsule the first day, two the second day, and then three the third day. I stayed on 900 mg a day for awhile and then was bumped up to 1200 mg some time later. I am still taking 1200 mg today.

I am too afraid to try methadone because of QT interval prolongation that can result in spontaneous cardiac arrest. I know it is rare but I don't want to risk it as everyone responds to meds differently and I may end up being one of the unlucky ones.

I know Fentanyl does not carry this risk. And there is a website I go to that tracks all of the meds that carry this risk, both OTC and prescription and I steer clear from them. This is how I feel personally and I sleep better at night knowing there is absolutely no risk of that deadly side effect occuring.
 
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annette030 replied to Anon_160307's response:
I am glad that you have found a medicine that works for your pain, and that you feel good about.

I use my hot tub every day, it gives me total pain relief for the time that I am sitting in it, and some muscle relaxation for a while afterwards, so the fentanyl patches are not a good choice for me.

Take care, Annette
 
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bren_bren replied to annette030's response:
So do you remember how long it took before you experienced relief?

I'm just getting impatient I think. I'm also taking it at night to avoid daytime grogginess-at least until I get used to it.

I wish fentanyl worked well for nerve irritation in my case.

Also, do you have experience w/ hip labrel tears? I think it may have been Swank who experienced this -- but it has been over a year since the conversation. I just want to know the symptoms, what it feels like, etc. I know it cannot be "diagnosed" w/out an MRI w/ contrast (nor on this board), but I want to learn what I can.

Thanks, B
 
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KatMit524 replied to Anon_160307's response:
The biggest problem with using Fent is that if your relatively new in your Chronic Pain journey, as a Rule you don't pull out the big guns too soon....because you will become dependent/tolerant of the drug and your Dr. will have a ceiling/max dosage that he feels comfortable prescribing. So, where do you go from there? This is why any Chronic Pain "newbie" is relegated by Dr.'s to follow the standard course of treatment, lesser meds first, different cocktails of meds, mixtures of meds and modalities. Alot of people think that Dr.'s are just being heartless and don't care about the patient, are only in it for the money...but the sad truth is, many Dr.'s know that many of us patients are on this Journey for a very long time, if not life, and they also know that the meds can only go so high....

Fentanyl has the highest "death by overdose" rate out of all narcotic/opiod meds, due to the fact that prescribing Dr.'s do not educate their patients properly about using the patches, specifically in regard to placement and temperature. Fent patches are supposed to be placed always above the breastline and when wearing a patch high temperatures are to be avoided, i.e. hot baths, showers, steam rooms, sauna's, heat outside, a fever...anything that can raise your body temperature, when the body temp. is raised it causes the Fent patch to release the medication prematurely and in large amounts. Fent also has the most interactions; over 700 drug interactions, 17 disease interactions and 2 food interactions, 1 of which can be deadly. Grapefruit juice....concomitant use of fentanyl with CYP450 3A4 inhibitors including grapefruit juice increases the plasma concentrations of fentanyl which causes adverse drug effects and can cause potentially fatal respiratory depression.

So, when it comes down to it, all these drugs are bad for us, they all have some potentially deadly adverse effect that can become a reality...unfortunately it seems that everything we Chronic Pain patients need to make us better also has a very high risk of making us worse.

Methadone is actually a very good Long Acting pain med., it works very well for back and neck pain and in the last 7 years it's been prescribed more and more for pain control as opposed to just being an addiction med. But like all the others it has it's quirks.

The key to all of this is just do your research, any time your Dr. gives you something new, make yourself familiar with it. There's tons of information out there. You have to be your own best advocate.

Kat
 
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TDXSP08 replied to KatMit524's response:
When i went to physical rehab hospital the neurologist decided that since i was 2 years stable on Fentanyl and oxcycodone he was going to switch me to Methadone and tried to start me at 5 mg 1 X per day and i told him that was outrageous unrealistic and patient abuse,and don't let the door hitt'em where the good Lord split 'em never come near me again.And refused the Methadone and had my meds from home brought to me and i took my own med's which got the hospital all in a tizzy because they are supposed to administer all meds to patients from there pharmacy and i just fired the head neurologist of the Hospital so no one else is going to prescribe what i was taking and go against the head of neurology, so it got really ugly between me and the "doctors" with the Nurses caught in the middle trying to duck when the excrement was flying back and forth.
i have no small step for man, but i have 6 tires for mankind,Watch your Toes!


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