Has anyone tried this? Can you let me know if it helped with nerve pain and if you've come off, is it hard to wean from?
LLMD wants me on this prior to aggressive treatment and I'm terrified to take this class of drugs. I got burned from the benzos big time and swore I would never touch another drug like this again.
Neurontin is not a benzo, but it is related.
thanks for any input!
Posted by dali (Member # 24458) on :
Neurontin is commonly used to treat neuropathic pain. I was prescribed neurontin for non-pain related neurological issues. It is not as addictive as the benzos. My experience with it was that it made me feel "dopey". Since I didn't obtain therapeutic benefit, I stopped taking it...with no ill effects.
Only you know your level of pain...and whether the benefit might outwieght the cost. From what I understand, Neurontin should be easy to wean off of if you try it for a few weeks. With antibiotic treatment, you will then be treating the cause of the pain and hopefully you can get off neurontin for good.
Just my thoughts and experience...I have had similar dilemnas with regard to taking drugs that deal with neurological issues.
good luck
Posted by kidsgotlyme (Member # 23691) on :
I feel like Neurontin really messed with my brain. It made me sleepy all the time. I personally wish I had never taken it, but you may not have as much trouble.
I think that I just took it for too long of a time. I think I took it for about five years. I didn't take it for Interstitial Cystitis, not LD.
Posted by jwall (Member # 22999) on :
Thanks Dali for the input. I have been in pretty severe pain, but I still think a lot of it is klonopin-related. So, I'm really scared to try any more of these neurological drugs.
I was one of the horror story w/d cases that one would read about online. It has been terrible. I know neurontin is different than benzos, but I'd like to avoid another w/d syndrome if at all possible. The brain doesn't heal well from chemical changes. It takes a LONG time.
Tried to explain this to LLMD, but seems he won't treat me if I don't get my pain under control...and I desperately need to be treated. He is a very well-known LLMD and said on a scale of 1-10 (10 being the worst), I am 8-9. Ugh...
Posted by lisamlj (Member # 24666) on :
I currently take a small dose of neurontin not for pain but for insomnia. I have had no side effects and it has been a huge help.
Sadly, your situation does not have an easy answer. I wish you well in your treatment.
Posted by fatherguido (Member # 25266) on :
I take it once daily about 1-2 hours before bed. It helps with my nerve issues when I need it most and sleep like a baby.
I was a little nervous about taking trying it at first and so was my wife. She saw some of her patients take this. However, it has worked fine in the light manner I use the drug.
Posted by julielynne4 (Member # 20336) on :
I took it for a while when my nerve pain from herxing was so bad in my back, shoulders and neck. It helped tremendously. I went off it without any ill effects (and usually going off of anything makes me ill).
Over the last two months, I started a new round of treatment and the pain has come back with a vengeance. My LLMD put me back on Neurontin, and I feel so much better.
If your pain is that bad, and if your LLMD recommends it, I say give it a try for a few weeks.
J
Posted by littlebit27 (Member # 24477) on :
I take 1800 mg a day. 600mg 3 X a day. It does work for my nerve pain, and takes the edge off of some other pain.
My PCP believes it is a cure all pain pill-which of course it is NOT.
I haven't tried to stop it so I don't know how well that is going to go.
I do not feel any side effects from it anymore. When I first started it it made me a little dizzy and I felt like the couch was moving. That didn't last long though. Now I don't feel anything but nerve pain relief.
Posted by jwall (Member # 22999) on :
Thanks everyone for the input! I was up all night fretting over this. It seems I probably need to give it a shot and maybe it will actually help and I can live my life a bit more. Doc says you cannot heal if you have severe pain. He only wants me to take 200 mg/day, so we'll see how it goes. Really, I have no other choice, but to take it...unless I want to find another LLMD.
Fatherguido, what did your wife see when she saw patients take it? Adverse reactions?
Posted by psr1 (Member # 22957) on :
I have taken Neurontin for six months now. It did nod make me feel drowsy: for a while was the only thing that kept me on my feet and able to go to work. I now take a very small dose at night - with Elavil - and sleep very well.
Posted by dmc (Member # 5102) on :
OMG Little bit...1800 mg of neurotin???
I only take 100mg a night & pass out. You must have a stong tolerance to the meds that affect the brain.
Neurotin is a anti-seizure med. in case one didn't know that. It's off-lable use is for nerve pain.
Posted by Keebler (Member # 12673) on :
- Some people do okay with this. Others don't.
Much depends on the total toxicity level of your body and the health of kidneys (and liver - even if Neurontin is processed through the kidneys, if the liver is stressed, the kidneys will be, too, and not able to handle as much).
And, although, Neurontin in very high doses has been used to reveres MCS (multiple chemical sensitivity), it seems to knock out others who have problems with medicines & other chemicals.
If you do use it, start with 1/4 or a 1/2 of the lowest dose. Some find a week or two period before the side-effects settle down. Some do better at higher doses. It's very individualized thing, it seems.
Be sure you have excellent liver support and that you aren't taking various OTC products that can overwhelm the liver or kidneys. Be sure to drink enough water, too.
Neurontin can be toxic to the ears, more so to the balance system, really. I recently discovered that while reading the book, "Ototoxic Drugs" by Neil G. Bauman. That explains a whole lot about my experiences with it.
Years ago, even just a mere sliver of the lowest dose knocked me out - for days. It made my legs turn to jello, my bladder fail and it actually lowered the seizure threshold in my case, allowing even the slightest sound to send me flying.
It also greatly increased vertigo and nausea. I tried this probably 5 or 6 times over a couple years. Always the same reaction.
There are other choices for anyone who has a history of sensitivity to medications.
[ 07-23-2010, 05:05 PM: Message edited by: Keebler ]
Posted by psr1 (Member # 22957) on :
I was taking 3600 mg a day: it was the only pain med that helped.
Posted by jwall (Member # 22999) on :
Keebler, I sound very similar to you and I have read about your experiences with these drugs. I am extremely sensitive. I am terrified to take it.
I have terrible problems with my ears. I feel like I'm finally getting some of "me" back after the whole klonopin ordeal. also, I had a persistent feeling that I was being pushed to the left and this feeling has greatly subsided over the past month. I have been off klonopin for almost a year (I only took a baby dose for one month). I have read that klonopin withdrawal can take anywhere from 6 - 36 months to return to normal. I seem to fall into the protracted w/d syndrome. In addition, klonopin took away my ability to see in 3D - which is horrific - for almost a year. This is now back, but still not 100%.
this severe w/d for me could've been due to the fact that my body was already stressed by lyme (didn't know I had lyme at that point, just really sick).
I tried to explain to LLMD and he just wasn't getting it. Although klonopin and neurontin are different drugs, I believe they work the same - klonopin on GABA and neurontin on glutamate. Not 100% on that.
It worried me when LLMD said that over the counter GABA was the same thing as klonopin. GABA supplement doesn't cross the blood-brain barrier, whereas klonopin does. I have done a lot of research on this.
I have to get treated, so not sure what I'm going to do. I just wonder if he treats the infection, won't my pain eventually subside on its own???
What are my other choices Keebler? I have a feeling my LLMD is not going to go for other choices though and will delay treatment.
Posted by Keebler (Member # 12673) on :
- What are your other choices ? Be sure to study the links above. So much is there. So much.
GABA really clobbered me, too, with repeated trials over time, and with tiny doses. It acted exactly the same way as Neurotin did for me.
And, as with Neurotin, I've heard of others who do just fine. Even that seizure article above may mention that - but not for me !
Why are you wanting the Neurotin? For pain; to help avoid seizures? Sounds like for nerve pain.
And, if you are going to be on certain meds that can cause neuropathy, I totally understand and agree that it needs to be prevented if at all possible. However, there are other ways.
Corydalis and Turmeric are good choices (if you are going to be on IV rocephin, though, you'd want the weaker Turmeric vs. the stronger Turmeric extract which is Curcumin).
Don't forget the power of magnesium & taurine, too.
All the links above give you plenty to find whatever it is to address whatever you wanted the Neurotin for in the first place. If that helps, great. If not, then move on from there.
If you are doing IV treatment, you could add IV Magnesium and Taurine.
But backing up, don't be terrified of anything. If you use that work with the LLMD it sounds as if you are coming from an emotional place and it also sound hysterical.
If you say, instead, that your body does not react well to --, and that you'd explored --- instead, offer some of the medical abstracts, that should empower you to manage a conversation from an intellectual point. I guarantee that, if the LLMD is a man, when he hears emotional words he is much more likely to tune you out. Even women MDs get hardened.
And, some may not have seen patients with such extreme reactions. It's really not all that uncommon with lyme patients, though. Are you SURE your LLMD is experienced?
Backing up (because I've been editing and lost all flow), in addition to you language, note what happens to your body when you move into fear. Then note what happens when you start thinking of other possible ways to make this work.
Stick with language that empowers you. A phrase that can work for you is: "The concern is . . . . " (Not that you are terrified.)
You get to decide if it's right for you or not. It is your decision. If the LLMD is not willing to work with you on this, that does not speak very highly of him. Most LLMDs are very familiar with certain patients have severe reactions to even tiny amounts of some things.
You should be able to hold your footing in your concerns, based on your history and preferences.
Most are also very familiar with supplement choices. You might see if you can find an ILADS-educated LL ND (naturopathic doctor) or LL L.Ac. (acupuncturist) for the support part of this.
Ask your local lyme support groups. -
Posted by bv (Member # 9578) on :
i take neurontin from time to time. when my burning skin is especially bad, i take 100 mg & it usually helps.
My LLMD told me when neurontin 1st came out, they did some studies to try to determine the Lowest Lethal Dose (LLD). They couldn't find a LLD.
You can take 10 of them (100 mg) at 1 time & you won't OD. You will likely get dizzy & you certainly will sleep for 36 hours, but no lasting effects.
Posted by Keebler (Member # 12673) on :
- You mentioned glutamine somewhere back there. FYI: --------------------
L-Glutamine can help with the stomach lining but be careful if anxiety or central nervous system irritation occur. Anyone with a seizure disorder should avoid this (as as sole supplement), unless in small amounts as part of a balanced formula. As seizures are not uncommon with lyme, it's just best not to do anything that can make the brain any more irritated than it already is.
Glutamine converts to glutamic acid in the brain and that can create further toxicity & irritation to brain/nerve cells for those with neurological illness and a compromised blood brain barrier (as with lyme):
AMINO ACID SUPPLEMENTS I: GLUTAMINE - with Reference to the Related Compound Glutamate
-by Subhuti Dharmananda, Ph.D.
Excerpt, half way down the article:
. . . Glutamate in Neurological Diseases
The other concern about glutamate is related to its essential role as a neurotransmitter. The levels of glutamate in the central nervous system (brain and spinal cord) are highly regulated, since the neurons have sensitive receptors for the compound.
* In some neurological diseases, it is found that glutamate levels in the central nervous system become unusually high at sites of pathology. This can occur, for example, if the rate of degradation of glutamate is slowed by an impairment of the enzymes that are involved.
* Also, glutamate is excreted by immune cells that take part in inflammatory processes; the result is high local concentrations at the neurons in progressive neurological diseases such as MS and ALS.
* Glutamate levels in the central nervous system can also increase when the blood brain barrier is substantially weakened, as occurs after neurological surgery.
* The excess glutamate at the neuron acts as a poison; at high enough levels, the nerves exposed to glutamate can be completely and permanently damaged, so that they are no longer capable of transmitting signals.
* Thus, while glutamate is a major component of the body, and an essential part of the nervous system, high levels localized in the nerve cells can be quite toxic, and this is readily demonstrated in animal models.
* Laboratory research has revealed that in the progressive, debilitating disease ALS, one of the many processes involved in disease progression appears to be damage of nerve cells by accumulation of glutamate.
* In relation to multiple sclerosis, changes in control of glutamate homeostasis in the central nervous system might contribute to demyelination of the white matter of the brain (19).
Based on preliminary animal studies, it has been suggested that glutamate dumped by immune cells can exacerbate the nerve damage (20).
* One of the means by which a stroke (causing blockage of blood circulation to the brain) results in brain damage is through an increase in glutamate levels in the brain cells (of course, oxygen deprivation and other effects are also contributors). These findings point to local glutamate excess as an important factor in brain diseases.
* Since glutamine is converted to glutamate, supplementing glutamine at very high levels in persons who have such neurological disorders may be contraindicated.
. . . . - Full article at link above.
=========================
This addresses the issue of glutamate neurotoxicity: --------
Prevention of ammonia and glutamate neurotoxicity by carnitine: molecular mechanisms. -
Posted by jwall (Member # 22999) on :
Wow, thanks Keebler. So much great information. Thank you for your time. I probably did use the word or close to the word "terrified" or maybe I just said I'm uncomfortable taking another anti-seizure. I'm sure I came off as being a bit hysterical or dramatic. My brain is firing correctly, so I have a hard time communicating in general.
He is a VERY well-known LLMD. I need to trust him. But, I'm still going to thoroughly read over everything you've provided and add it to my folder, so that I am prepared. I will give neurontin a try and if it works, wonderful, and if not, I will have to let him know I'm having a hard time.
I think neurontin calms glutamate, but not sure...oh, I am needing the neurontin he said to calm the brain down in general. I also have pretty severe nerve pain - it waxes and wanes though, but on the first round of antibiotics, it was pretty severe. Also, severe nerve pain headaches as well. Well, all sorts of different types of headaches.
I will be on an aggressive protocol starting in 3 weeks, so he is wanting my pain to be under control before then.
Posted by jwall (Member # 22999) on :
sorry, I meant my brain ISN'T firing correctly. But, great points above on how to manage the conversation better. I will remember that next time. I feel like I did express myself as best I could about my concerns.
So, I really do need to calm glutamate then because I just read it can permanently damage nerves. I need to further explore how neurontin works on the brain because I think I've read that it reduces glutamate.
Posted by Andie333 (Member # 7370) on :
I have taken neurotin for the past year but not regularly--only when the nerve pain is really bad.
It doesn't seem to cause any ill effects, cognitive or psychological, nor does it make me drowsy. I sometimes take it at work, so I'd know.
I completely forget to take it until the pain gets out of control, so for me, it seems to lack that addictive quality I had been concerned about.
Hope you're able to find something thta works for you!
Andie
Posted by Cass A (Member # 11134) on :
Dear Keebler,
Thanks again for the article on Seizures: A Nutritional Approach!
I was interested to find that you had a bad reaction to GABA--I did, too. Was very cranky and easily upset for the first two days I took it, then had a seizure on the third day. Since I was taking it to STOP seizures, this was very much not appreciated!!!!
Neurontin--one of the most fraudulently advertised drugs ever put on the market. The maker actually 'fessed up and paid a huge fine!! Thanks for providing some clear data about it and alternatives.
Best,
Cass A
Posted by illusion91 (Member # 26361) on :
I was first put on Gabapentin (Neurontin), for severe neuropathy in the extremities, and I had a paradoxical reaction, but something my doctor suggested trying a certain type of antidepressant, as some of them have been known to help neurological symptoms, and she prescribed Nortriptyline. I have been on it for about 6 months now, and it has really helped my neuropathy! I have only had 2-3 minor episodes, but nothing debilitating like I used to face multiple times a week. I don't know what kind of pain you're having, but it is something that has worked for me, when all other options were exhausted. I'm not sure if my LLMD is going to keep me on it once I start treatment in a few days, but I will let you know.
Posted by nenet (Member # 13174) on :
Hi jwall,
I don't think you are overreacting to the situation at all. You need to be able to trust your own experiences and your own body, and you need to be able to act as a partner in your health care.
No matter what praises this LLMD may have, the bottom line in finding the right doctor for you is if they will listen to your concerns and work with you.
If they won't budge even on something like what to use for pain relief, that would really bother me, personally. There are plenty of other prescription and OTC and alternative paths to pain relief.
If they are still not open to other options for pain relief after you expressing your well-founded concerns, then imagine how they will respond to you if you need flexibility during the Lyme treatment course.
You need to be able to trust your doctor. This one may be great for some people, but not every doctor is the right match for every person.
If you are concerned with getting into Lyme treatment ASAP, I would try to be very clear the next time you can speak to them, and say you understand the need for pain to be lessened, but your concern about this class of drugs is too high and you would like to try something else - acupuncture, NSAIDS, Turmeric, whatever.
If they aren't willing to at least let you try other options first, you might want to consider seeing someone else that fits your needs better.
Just my 2 cents. I learned early on after my first LLMD, that it's very important to find someone that you can work well with.
Lyme treatment can get very rough, and you need to have that level of trust and mutual respect to support you when things get difficult.
Sorry for rambling - it's after 4 AM and I'm kind of out of it. I accidentally had some dairy the night before last and it's still causing a flare in neurological symptoms.
Posted by jwall (Member # 22999) on :
Thanks so much. I STILL have yet to take the neurontin.
Nenet, I was thinking the same thing the other day. What if I cannot tolerate his treatment protocol?? Will he allow me to move on to a different drug? Will I be too scared to tell him that something is not working? In fact, I'd really prefer not to take levaquin (the quinolones are another class of drugs that worry me) and this is part of his treatment protocol.
I've never been big into the prescription drugs. In fact, rarely did I ever take a prescription drug before all this. BIG learning lesson with klonopin. Brain drugs are very hard to bounce back from. My brain doesn't like to be messed with apparently.
I'd almost rather go with a narcotic, simply because the withdrawal syndrome associated with narcotics (if one becomes dependent) usually lasts a maximum of 30 days. The brain drugs can cause a serious protracted withdrawal syndrome which can be sheer torture...and who knows how safe these drugs really are? I am watching the ads on TV about Reglan and lawsuits. Those poor people took that drug and listened to their Dr. and now have a serious irreversible neurological condition. Same with accutane - we are now seeing all these serious adverse effects that are coming out years later. I read that nobody really knows how neurontin and lyrica work, same with Cymbalta...well, that is just not acceptable.
I really do agree that I need to have a partnership and that I need to trust him which is hard for me to do after all the foolish doctors I've seen. I am so very ill and this doc has helped 1000s. He knows how to help me and he is just simply saying, "it's not going to be easy, but listen to me and I will get you well." He said that my neuro. condition is very bad - 8-9 on a scale of 10, 10 being the worst. He has seen a lot, so I know this means I'm not well at all. I was actually in denial about just how sick I am. So maybe i do need the neurontin. He did suggest klonopin as well and listened to me complain about that drug and backed off and suggested GABA instead.
Guess I will try it and will keep you all posted...
Posted by fatherguido (Member # 25266) on :
Jwall, To answer your question, my wife worked as a Case Manager for handicapped adults. She has seen people taking medications like Neurontin but they frequently take anti-seizure meds as well.
Those negative side effects she saw were more associated with the anti-seizure stuff. That is why my wife was skeptical Neurontin.
Posted by fatherguido (Member # 25266) on :
Jwall, To answer your question, my wife worked as a Case Manager for handicapped adults. She has seen people taking medications like Neurontin but they frequently take anti-seizure meds as well.
Those negative side effects she saw were more associated with the anti-seizure stuff. That is why my wife was skeptical Neurontin.
Posted by jwall (Member # 22999) on :
Well, 3 days on neurontin and I feel alright. I am only taking 100mg at night. I am to add 100mg in the AM in a few days and then add another 100 mg at night for a total of 300mg. I really don't feel anything - good or bad. Maybe slightly better with the nerve pain in my ear, but I still have widespread body pain and definitely still feel it in my spine. I don't feel any horrible side effects...yet. I do feel a bit spacey, but I've felt spacey for a while now. Keeping my fingers crossed that all goes well...
Posted by Wonko (Member # 18318) on :
I just resumed taking the generic form. I took it for several months while undiagnosed, but stopped when I began treatment to make it easier to distinguish the effects of the antibiotics.
It was somewhat helpful to me in the past, the highest dose I used was around 1800 mg a day (broken up over 3 doses a day).
Lately, I've had tons of burning sensations in my skin, and it is very distracting. So I am trying it again. I started small, 100 mg before bed the first night, and am now at 300 mg twice a day.
It hasn't been long, but I think I notice a subtle improvement. Always hard to draw correlations because there always seems to be more than one parameter changing at a time!
Hope it helps you.
Posted by sutherngrl (Member # 16270) on :
I took Lyrica, which is basically the new neurotin. I could not take neurotin, but could take Lyrica for some reason. Neurotin made me very depressed, Lyrica didn't.
I took Lyrica for at least 6 months and it dulled the pain, but nothing seems to get rid of lyme pain completely.
It did make me a little dopey, but at the time that was a welcome benefit. Eventually I got tired of feeling that way and as the pain improved I stopped taking it. It was easy to get off of.
I think it is something you just have to give a try and see. Its not like you can't stop taking it if you need to. Some ppl get past the dopey feeling after taking it for a while. It also helps some ppl with sleep and other neuro issues.
Posted by jwall (Member # 22999) on :
It's been almost 2 weeks and I'm not doing well on neurontin...or I'm blaming it on neurontin. My pain level has gotten significantly WORSE!!! Isn't neurontin supposed to help with pain? This is bad - really bad nerve pain - and now I don't know if I should just stop neurontin or keep going and add more??
why would neurontin make my pain worse? or maybe it's just the lyme making me worse?
I'm so tired of being in so much pain. It really takes everything out of me. I haven't even started treatment yet. I go for IV on Thurs. What will I do when I am herxing?
Posted by gatorade girl (Member # 24896) on :
It is supposed to help with the nerve pain. My pain has gotten better with treatment. I do take neurotin and it has helped. What dose are you on? I'm sorry you are in so much pain .
Posted by Consuelachacha (Member # 26538) on :
I know I have been on Neurontin in the past. For some reason I believe it was when I was dx for Lupus.
Not for sure?? I gained a lot of weight and looked very bloated.
My memory is gone, but I believe that was what the Rheum. put me on.
Posted by lymebytes (Member # 11830) on :
I started Neurontin several weeks ago. Very low dose and working my way up. I have suffered EXTREME neuropathic pain for over 4 years and nothing helps. Xanax can calm it temporarily.
The worst side effect for me in the past few weeks has been nightmares, but they subsided quickly and I am now moving up in dose. I am nowhere near a helpful dose yet.
Neurontin will not work if taken once in awhile, it must be taken on a regular basis and given ramped up to a minimum of 700mg to attain pain relief. Neurontin can be used up to 4000mg per day. But I do believe this drug has good possibilities of helping many of my insane LD symptoms, not only pain and intolerable neuropathy, so I am hanging in there until I reach the minimum needed dose.
Neurontin is not like Lyrica, though many say it is a "cleaner" version, not true if you study it and the way it works. It works on GABA in the brain, our natural "control center" for relaxation. Lyrica does not work on GABA. It does not work chemically the same way.
Lyrica did absolutely nothing for pain (and made me feel suicidal/insane) after a one year of it. A nurse told me Lyrica is meant more for muscle pain than neuropathic pain.
As for your pain getting worse, that is possible for a very small percentage of users of Neurontin. But there is also proof that long term Neurontin use (abstract below) has shown in one study to boost certain parts of the immune system in AIDS patients, so maybe your immune system is killing bacteria possibly? Just a thought.
Wishing you relief...I know your pain. Posted by jwall (Member # 22999) on :
Thanks lymebytes for the articles and information. I am supposed to raise it to 300 mg at night and 100 during the day. I'm sure my Dr. will want to raise it even more when I see him on Thurs.
My fear is I won't know if I'm getting better from the IV or if neurontin is just covering up the pain.
The article did say that the patients were weaned down slowly and if pain reappeared, the dose went up again...and if pain didn't appear, I suppose patients were able to wean off completely.
I seem to be better this week, so I'm wondering if it was neurontin or if it was my period causing an extreme flare. I am still in pain, but much more tolerable this week. Maybe neurontin is kicking in. I do take regular doses.
That's interesting about neurontin boosting the immune system. My immune system needs all the help it can get.
do you take 3 doses/day or just a dose at night and one in the AM??
THANK YOU!!!! I hope you get relief too. Life would be much more enjoyable. The pain can get so bad that I just want to die (of course, I wouldn't act on that...but sometimes I just feel it would be easier to die).
![[Frown]](frown.gif)