Question about Gabapentin

Hi I was taking 1800mg a day (600mg 3 times a day) before switching to Lyrica the updated version of Gabapentin. Some people take as much as 5400mg a day. My DRs’ maximum dose is 2700mg. But now on Lyrica I take 75mg in the morning and afternoon and 150mg at bedtime.

Sue

600 mg is not a lot, but each person is different. Often people do better if they increase the amount very slowly–with less dizziness or sleepiness. Try taking three at night and two the other two times in the day as well as spacing the doses out through the day as much as possible. If you are okay with this and not getting dizzy, try adding one more after a few days (for example, to the first time to take it) and then after a few days more go to three pills three times a day if the dizziness does not return. Often going slowly works because your body gets used to it. I say this from experience with taking care of children starting neurontin/gabapentin and similar medicines.

With Hope for cure of these diseases and that all would not have to deal with the pain of them.

I have been trying to adjust my dose of Gabapentin as well. I started at 300mg three times a day and I may as well have been drunk. I absolutley could not function nor even drive. I reduced my dose to 300mg at bedtime for two weeks and then went to 300mg at bedtime and 300mg in the morning. I still felt drunk, dizzy, disoriented, etc. The 600mg/day was helping but the side effects were killing me. I am switching to 200mg three times a day and will see how that works out. I spoke to the doctor today and he warned me to not compare Lyrica and Gabapentin by dosage alone as they do not work the same way. I am hoping this works for me. The doctor suggested that 900mg (my initial dose) was too high as a starting point. This is a drug that you need to build up slowly in your system and the optimum dose as was said by someone else will be very individualized. I’ll keep you posted as to how it goes.

Hope this helps.

Janet

Oh, also…the neurologist did tell me that it cold take 2-3 weeks or longer before I actually felt any change or benefit from the meds.

J.

I take Gabapentin as well. I take 2 -300mg pills three times a day. I take them at breakfst, lunch and dinner. At bedtime I take 20 mg Noratrypline.

Yes it takes a couple of weeks to level out.

After IVIG I tired to go off it. That didn’t last long!
I was crawling across the floor at 4 in the morning to get some Gabapentin cause I was in so much pain!

Rhonda from Canada

(There are 2 Rhonda’s and people are getting us mixed up)

you can take up to 5600 mg/day. til you get used to it, any amount can make you sleepy/dizzy.

gene, away from home

I was very blessed to wean myself off the Gabapentin after 7 months!!!

I was on the neurontin from hospital release for about 4 months. I was still having a high level of pain so my neuro switched me to Lyrica. For the past 3 months I have been switching back and forth every few weeks but NEITHER one really takes away all the pain. I’m learning to live with it and get plenty of rest.

The reason I answered is that I was a total zombie on the neurontin. Plus I had hand and feet swelling. With the Lyrica I am much more clear headed and do not have the swelling. After weighing the differences in the two (they both managed the pain the same way but the side affects of the neurontin were much worse, and I didn’t really realize how spaced out I was until one of my neighbors asked me if I was stoned!) I am going to stay on the Lyrica.

I think the bottom line on this whole GBS/medicine thing is that even tho we all have many common problems, we also have specific problems to ourselves that we have to deal with. The doctors really don’t know that much about GBS, and won’t unless they actually experience it themselves. Trial and error, staying in contact through this web site and lots of rest seems to be the key.

Happy Holidays to all. And I truly wish all of us a prosperous and GBS free new year!!!

linda,

if you post on this thread after 1-03-08 & remind me, i have a bunch of other non-opiate pain relievers you can try.

gene, not at home

I have been taking 800 mg of gabapentin 3x a day for over two years now. I seem to have a high tolerance of pain meds – both good and bad. I can muster my way through most drugs that knock a horse off its feet, but then when I ask my doctor for something strong wnough so I can function, he thinks I am a drug abuser. I have also tried Lyrica, but didn’t notice any difference over the gabapentin and it was twice the co-pay price for me. Next month my doctor is going to put me on Lamictal; he thinks it might work better as I also have to supplement the gabapentin with Tylenol with codeine #3 on bad days. Has anyone else tried Lamictal?

Laura

laura,

you can take up to 5600 mg/day of neurontin.

gene

I take 3300 mg per day of neurontin, and i have tried Lyrica, for me lyrica did not take as much pain as neurontin so I switch to neurotin. It work diffrent for every people, yes you get the drunk feeling first you start to take both this med but after week or 2 then you start to feel normal, but you aint 😀 just wonder why 😀 I have stick with 3300 becouse it keeps me insain I could take more but Im not sure it is worth it, you need to have some reminder that you have had GBS;)
xoxoxoxoxoxo
Helga

even 900 mg/day of neurontin is nothing. up till the pain leaves. take care. be well.

gene gbs 8-99
in numbers there is strength

I was taking 900 mg to start with because of the pain from my nerve biopsy and it wasn’t long I was at 1800 mg mostly just for my ankle pain.

Sue

I have been on 5400Mg Neurontin for 3 1/2 years. I tried cutting back 2/3ds for a month. I will NEVER miss another dose, it was very painful. Now on top of everything my neuro is starting me on LAMICTAL. Lately I have been having painful bouts with this band around my ribcage. Hopefully the LAMICTAL will lessen the marbles I walk on and this tension around my ever growing middle. I’m sure my case is a bit different due to being Diabetic T1. As for the neurontin, I don’t recall all the symptoms others relate. My Dr put me on Neurontin immediatly at diag. I believe it saved me from much.

linda & all,

if neurontin doesn’t work for you, you can try these non narcotics; elavil [amitriptiline], topamax, lamictal, trileptal, keppra, carbamazepine, cymbalta up to 90mg. take care. be well.

gene gbs 8-99
in numbers there is strength

PianoWoman,

thx, i missed michael’s comment abt walking on marbles. that’s what i walk on too. i even call them the bigger shooter marbles, it is that defined. take care. be well.

gene gbs 8-99
in numbers there is strength

PianoWoman

I also “walk on glass”. I can not walk with out shoes on or the pain is unbearable.

I wear a good support runner all day long.

I can relate to the pain you are in. The gabapentin helps a great deal. I tried to go off of it once. At 4 in the morning I was crawling to the bottle cause the pain was so bad. I take 2 300mg pills three times a day.

The other thing that I found to help with the pain is a hot rice pack.
Take some material sew a pouch put some long grain rice in it sew it closed.

Microwave for 1-2 minutes. You can also put in freezer.

Massaging the feet some times helps with the pain.

Hope this helps you out.

Rhonda from Canada

[QUOTE]you can take up to 5600 mg/day. til you get used to it, any amount can make you sleepy/dizzy.[/QUOTE]

Yikes, gene. Any ill-effects on the liver? Can the body tollerate so much?

rocker,

no effect on the liver. besides some gbsers having to go that hi, the pdr [the abt 6 yrs ago edition] says when initially tested, subjects were given 50,000 gm/day w/o ill effect.

take care. be well.

gene gbs 8-99
in numbers there is strength

Gene dont you love theim.. Im starting too.. better to have theim and walk then not and be stuck in the chair;)

[quote=Rhonda]

I wear a good support runner all day long.

.
Rhonda from Canada[/quote]
I have been in the same shoes since I start walking again, cant change every shoes hurt me.

The other day listening to the radio in my car, a commercial came on for a study with people currently taking gabep. You have to currently be taking it to enroll – or I would have called. It has been a few years since I have taken Neuronton.

I wonder what drug they are looking at now???

whoops, i meant 50,000 mg, not 50,000 gm.

gene gbs 8-99
in numbers there is strength

I am thrilled it works without side effects!

When I was in the hosp I was on 100mg 3x day while I was on the IVIG
When I got out they boosted it to 200mg 3x day and 400 at bedtime.
Few weeks later neurologist boosted it to 300mg 3x day. Within a day or two I started breaking out in a rash that spread to aqbout 75% of my body.
Saw two skin specialists who prescribed salves and one took a biopsy which showed nothing biological. Said it was med reaction. Stopped gab and was was switched to the nortriptylene. Rash went away. Am now in a recurrance mode that has stalled as far as any improvement or worsening???:confused:
W

Altho rather strange, there are generic meds that don’t work for some people. There is only one antibiotic that I can take and it has to be the “real deal” ~ the generic gives me terrible side-effects. We each have our own unique body chemistry so “one size doesn’t fit all” 😮

I am appalled that the neuro doc said that all of your symptoms had nothing to do with GBS 😮 Have you given the Foundation her name and address so that they can send to her the medical info?

Keep working with neurontin until you find the amount that works for you. Good luck!

Summer 1998

Pain in GBS

[FONT=”Comic Sans MS”][SIZE=”2″]Piano woman,
This article is from the archives of the GBSFI newsletters. I’ts clear and concise and it helped me to understand the course of medications I was given. Maybe your Neuro should read it?:rolleyes: [/SIZE][/FONT]

Pain in Guillain-Barré Syndrome
Gareth Parry, MD Department of Neurology
University of Minnesota Minneapolis

Guillain-Barré Syndrome (GBS) is a disorder in which the dramatic nature of the paralysis overshadows all other features. Pain is not given much attention but is an integral part of the disease; in some studies, pain has been reported in more than 80% of patients. It has been my experience that pain is frequently underappreciated and underdressed by physicians. At one extreme, I have talked to patients who have been told that they cannot have pain because pain does not occur in GBS. Pain may occur during the acute phase of the illness and may even predate the onset of the weakness or it may occur during recovery and rehabilitation. Because of space limitations, I will not discuss the emotional pain but close attention to anxiety and depression in both patients and their loved ones is a critical part of overall management of GBS. Nor will I discuss the pain which may occur during the rehabilitation process.

Pain during the acute chase of the illness:
Pain may be the first symptom of GBS or may develop together with the weakness. It typically is located in the region of the spine and the upper parts of the limbs. For example, there may be pain between the shoulder blades, in the low back and buttocks or around the hips and shoulders. The pain is often difficult to describe but tends to have an aching or cramping quality. There may be stabs of pain with movement. It is not at one clearly localized point but is somewhat diffused and seems to be deep in the body rather than on the surface. It is usually no more than a nuisance but may be severe, particularly in patients with rapidly progressive and severe paralysis. In such patients, who may be on a ventilator and unable to communicate easily, it is very important to ask specifically if pain is precut. This is the most neglected type of pain seen in GBS since the doctors are concentrating on the life-threatening aspects of the disease. However, when severe it may cause dangerous heart irregularities and changes in blood pressure and aggressive treatment with strong analgesics such as morphine may be needed. Care must be taken with the use of these narcotics in patients with reduced respiratory function since they may cause respiratory failure. If the patient is already on a ventilator there is little cause for concern. This pain may resolve rapidly during treatment with plasmapheresis. It also improves with steroids such as prednisone. It is also important to realize that immobility causes pain which can be alleviated by frequent turning and passive movement of paralyzed limbs so experienced high quality nursing is very important.

Pain during recovery:
As recovery from paralysis progresses, the pain discussed above usually subsides but may be replaced by a different type of pain. This new pain tends to be localized in the lower part of the limbs, particularly in the feet. The pain is less often of the aching/cramping quality and is more burning, stabbing or shooting. It may be associated with marked sensitivity to touch so that even the light touch of the bed sheets is perceived as pain. It is also exacerbated by exercise and weight-bearing so it may interfere with rehabilitation. This is called “neuropathic pain” and it responds rather poorly to narcotic analgesics although they should still be used in severe cases. Best responses are seen with certain antidepressant drugs such as amitriptyline (Elavil) and nortriptyline (Pamelor) or with anticonvulsant drugs like gabapentin (Neurontin) and carbamazepine (Tegretol). High doses are usually necessary and response may not be immediate. In my experience, the most common cause of failure of these drugs is that the dose is not high enough and is not used for long enough. Most patients will experience side effects if the drugs are used in sufficient doses to relieve pain but the benefit should outweigh those side effects. Another problem is patient expectations; treatment is expected to reduce the pain but will seldom abolish it. If a patient is expecting to be pain free and there is only a 50% reduction in pain intensity that will be regarded as a treatment failure and yet that is about the best that can be expected. Nontraditional treatments such as acupuncture may also help. Neuropathic pain also subsides with time but may persist for months or years and occasionally some pain may persist permanently.

In summary pain of some degree occurs in most patients suffering from GBS and may occur at any stage of the illness. It is frequently ignored and usually is underadressed. Fortunately, in most patients it is mild and, even when severe, it usually improves spontaneously or with treatment.

[FONT=”Comic Sans MS”][SIZE=”2″]I am fortunate to have a wonderful team of Neurologists, all of whom are of the opinion that the pain is very real, and should be treated aggressively. You cannot concentrate on healing or any other aspect of your life if your pain is overwhelming.
I am currently taking 800mg Gab 4X daily, 20mg 12 hour sustained release oxycontin 2X daily (down from 40mg) and it’s working pretty well, but I daren’t miss a dose of Gab, as I did two days ago. By the time I got home and took it, I couldn’t decide if my feet were killing me or had turned to wood.
Isn’t this the strangest thing the way we all react differently?
Hope you get your dosing straight, and don’t hesitate to ask for stronger medication, like Dr. Parry says, the benefits may by far outweigh the risk of side effects.
May Peace and the Force be with you
Veronica[/SIZE][/FONT]

[QUOTE=Judi Z]Altho rather strange, there are generic meds that don’t work for some people. There is only one antibiotic that I can take and it has to be the “real deal” ~ the generic gives me terrible side-effects. We each have our own unique body chemistry so “one size doesn’t fit all” 😮 [/QUOTE]

The beta-blocker I take has to be the brand name (Toprol), not the generic (metoprolol). I started out taking the generic version and had horrible side-effects for a while, so much that I actually considered stopping it or asking for something else from my cardiologist.

Then I did a web search for the drug and discovered that many people had increased side-effects on the generic over the brand name. So I asked the pharmacy for the brand name instead, and lo and behold, I have ZERO side effects on the brand name.

In fact, on the generic med, I felt like I got a rush for about half a day, and then the other half I crashed with increased weakness, palpitations, chest pain, etc. for a while before taking the next pill. On the brand name, I don’t get any of that. It’s like the release of the medication is more stable, whereas with the generic it seemed like the level was fluctuating in my system and causing lots of ups and downs of my symptoms.

I know generics and brand names are supposed to be identical, but they really aren’t. Some people don’t notice much of a difference, but many people do. It certainly was a huge shift for me when I switched to the brand name.

I’ve also read that generic thyroid medications don’t work as well, and that you should always request the brand name of those to properly control your condition.