Anyone have good - or bad - expereince with gabapentin?

[lenora]

Hello @SlamDancin......I'm not pushing drugs, trust me. I've tried every alternate method for pain relief and have had this for a very long time. However, in the end sometimes drugs are the only answer for some of us. I think a lot of drug problems have to do with the person involved....and the way the doctor handles stopping them. Personally, I've never had problems, or at least problems that can't be withstood, and thank goodness something finally came along to help relieve the pain that many of us suffer. We're all individuals and that includes in every way possible.

The same goes for problems like anxiety/panic attacks or depression. After all, suicide often isn't done with drugs. You could even say it's by natural means b/c the body doesn't absorb a substance of some sort or another. So please, try to understand that not ALL drugs are bad things, some do help.

I'm quite a reader and recently finished a book about Purdue Pharmacies (the reason for the fentanyl crisis we're still battling), but even after that I understand that certain drugs are needed when they're needed.

I'm now 75 and have developed two different forms of epilepsy. I can assure you that a seizure can do considerable damage and it's better for me to be on the meds. Nothing else will control them....and a recent fall b/c of a seizure left me with 5 fractures.

What I'm saying is this: Carefully weigh whether or not you need a medication. If natural means will suffice, try that first. If not, consider the damage done, the life you want and whether or not your addiction prone. Most drugs are NOT addictive. A good doctor will give you time to think things over...and sometimes the decisions are very difficult. Yours, Lenora.

 

[YippeeKi YOW !!]

Most drugs are NOT addictive.

All antispasmodics, anti-anxiety, and insomnia drugs are highly addictive. Any drug that acts on the brain or the CNS is very, very addictive.

And most other drugs, from statins to Metformin to blood pressure regulators have to be discontinued slowly and carefully to avoid the potential for negative repercussions related to rapid cessation.

Drugs often have considerably benefits, but those also frequently come with considerable risks, which should be carefully considered and communicated clearly to the patient by the prescribing Dr. In fact, it’s an ethical requirement, called informed consent.

 

[Rufous McKinney]

During my doctors valiant 35 minute attempt to get my insurer to cover me trying Modafinil (denied).....on the call to authorizer number 5, he indicated I'd tried Lyrica...(and a list of other things I've never taken and have nothing to do with waking up by trying some Modafinil.)

Denied, Still, at Authorizing Person # 6. And so after 35 minutes, this is why doctors don't want to fight wiht your insurer.

 

[YippeeKi YOW !!]

Denied, Still, at Authorizing Person # 6. And so after 35 minutes, this is why doctors don't want to fight wiht your insurer.

It's a real snake-pit, dealing with insurance comapnies.

My oncologist had a team of three or four very sharp, very savvy experts whose sole job was to deal wth insurance companies.

They must have been good, because they managed to get coverage for a still pretty experimental drug, without which I would probably have died. The cost would hvae been prohibitive and impossible for us to cover out-of-pocket, unless we'd sold our home, both cars, all our household goods, the retirement accounts, and DB had agreed to go into indentured servitude.

The above serves as one of my gratitudes on days when it's hard to dig around for any others.

Our medical system, to paraphrase Churchill badly, is the absolute worst, except for all the others ...

 

[vision blue]

I’ll be honest I hate how sticky it is (I hesitate to call it addictive) but the withdrawal is real. It’s a strong NMDA antagonist from my understanding and glutamate as we know is very tricky to mess around with. I would urge people to stay away from Gabapentin unless you need it because it loses effectiveness really quickly and then you’re just stuck on it IME

How fast did it lose effectiveness for you?

I dont think i knew it acted on nmda receptors. Ive heard different things like binding to a subset of calcium ion channels and also blocking catecholamine release from adrenals and brain.

 

[vision blue]

To clarify, Lyrica doesnt work on the GABA system directly, but has been found to increase the extracellular GABA levels in the brain. .

I def made a mistake by listing lyrica in the poll since i meant to get peoples experiences specifically for gabapentin

As far as ive read gabapentin (have no idea about lyrica) does not alter GABA levels even though the structure of gabapentin similar to GABA.
I listed a couple of actions in previous message)

 

[SlamDancin]

Looks like the calcium channel subunit that Gabapentin inhibits complexes with NMDA and in vitro Gabapentin does inhibit NMDA receptors. Glycine competed with Gabapentin for binding

 

[vision blue]

@SlamDancin Thanks. Interesting. And makes it so hard to figure out why I benefit from it.

 

[lenora]

During my doctors valiant 35 minute attempt to get my insurer to cover me trying Modafinil (denied).....on the call to authorizer number 5, he indicated I'd tried Lyrica...(and a list of other things I've never taken and have nothing to do with waking up by trying some Modafinil.)

Denied, Still, at Authorizing Person # 6. And so after 35 minutes, this is why doctors don't want to fight wiht your insurer.

Medications are commonly denied and it takes multiple calls to insurers.

When I first began seriously needing brain surgery and the like, it took both myself and my doctor's office to accomplish an OK for the doctor and the hospital that I wanted to access. Prior to this time the doctor had the power to make decisions without an OK from the insurer. When Kaiser Permanente came out with its plan for employees, things began to change drastically.

Now doctors have to employ a whole department that handles nothing but insurance requests and forms, forms, and more forms. It makes it very frustrating for all concerned.

Research and new drugs are highly expensive, as well as new surgeries, cancer treatments that really work and I could go on and on. The "new" way of medicine is very difficult, but we can't discount the fact that medicine like everything else continues to evolve. Computers just added another layer of complications to the list, yet they've also helped advance medicine.

I miss the days when I started this journey of a multitude of problems (at least 35 yrs. ago) as life seemed so easy. However, I also know that many of you will be the recipients of this evolving world and that makes me happy.

It's confusing, at best. Yours, Lenora

 

[Alvin2]

It had no effect on me except for some withdrawal pains. Here is my thread on it.
https://forums.phoenixrising.me/threads/have-pregabalin-prescription-should-i-try-it.83770/

 

[vision blue]

I can't remember if i mentioned this above, but was reading on drug feedback forums so not sure yet if true that gabapentin lowers dopamine. And interestingly (again can't remember if i posted on this or not in this thread, many of those on the drug forum who reported horrible evil side effects were all people who seemed to get depelted of too much dopamine - so they had symptoms like you might expect from someone with parkinsons (not enuf dopamine)- they had rigid spastic muscles, hard to walk and move around, cognitive word finding issues, some emotional stuff. On the other hand, i have always thought i had high dopamine and I just got confirmation this week! So perhaps for me it lowers dopamine to a more healthy level? Do any of you who answered survey etc know if you have high or low dipamine?

 

[YippeeKi YOW !!]

It had no effect on me except for some withdrawal pains.

I agree. And it wasn't just 'some' withdrawal, it was pretty pronounced and fairly unpleasant ...

 

[PhoenixDown]

I found that it masks symptoms temporarily but doesn't prevent the indefinite worsening of my condition that I experience from exerting myself. It makes me impulsive and more likely to exert myself. I built up tolerance to it a long time ago.

 

[vision blue]

Took some (cream form) last night becasue of very bad day of exertion yesterday on heels of another.
For me it remains amazing! (though i don't take it often). So really would like to compare notes with those few who felt they had dramatic benefit from it.
Did not lower my very high bp but doing other very good things. it will wear off soon so i should type before i no longe can.

 

[lenora]

Hi @vision blue.....I started on gabapentin when it was first introduced. Doctors had no guidance as to how many mg. to give, thus my dose was way too high. Others, however, did very well at the higher doses. We guinea pigs have been used for awhile now.

After 3 mos. and a lost mind (mine), it did help with the pain - considerably. However, I went on lyrica went it came out and have been on it ever since.

Fast forward many years and a cream available from a compound pharmacy became available (still with prescription only). It contained gaba and was fairly good and lasted for a decent amount of time. I had a large area that needed treatment, so this was very important to me. Expensive? Yes, it was. Ask for well packed ice packs if ordering it by mail.....especially in a hot climate as it breaks down in the heat.

Then they came out with fentanyl added to the gaba, plus other drugs that were absorbed via the skin but avoided the liver. I haven't renewed this 'script b/c the fentanyl was messy and I felt the gabapentin worked fairly well with the other meds.

No, it doesn't "wear off." I used it daily 2-3 times as needed. It helped and helped a lot.

Today I use a lidicaine formula found in many products. I believe 4 per cent is the highest you can go, but it helps and I find the roll-on type better than others. You can even get it in a lavender scent (but I'm allergic). Good if you're out and need something fast. The sprays leave me choking, so the roll-on type works best. You can obtain these OTC. It's all mix and match until relief is found. I still use lyrica and have found that it works very well for my particular problem. Good luck. Yours, Lenora

 

[vision blue]

hi again @lenora I've never used lyrica, but it sounds like you may also be a gabapentin responder? though yours took 3 months- with the pulls - sounds like you had faster improvement with the cream? (that's what i take).

for me, it allows me to sleep. I put in on at bedtime. That's one realy beneift. Then the next morning, i have a great sense of well being. it seems to curb my overactive symptathetic nervous system as well as give in its place a comfortable sense of well being, which is in contrast to often feeling like i wsih i could escape from my skin (before SNS overactivation, i never had that feeling except once when i was given valium by IV in ER which made me want to rip my skin off and only will power kept me fromdoing that and screaming). In additoin, that next morming i realize my usual aches and pains are gone, sometimes completly, others that are really bad are greatly attneuated- so suddently no musle soreness pain in thighs and arms, no tendon pains in elbows etc, and neck pain greatly reduced. Also lets me work at computer longer - but that could be a bad thing casue takes longer me to notice its bad effect on neck. By around 1pm, its wearing off and pains start to come back. But, a very good thing, is I don't get tremendous rebound. So its not like the pains come back worse than baseline for a while, nor do i have a sleepless night the next night (of course maybe its really taking longer to wear off and perhaps the real rebound is occuring only later and i'm not connectiong it.

anywya, i'm not sure if we are similar enough to compare notes on why we are responders whereas 60 percent of the population are not.

 

[lenora]

Hello @vision blue.....I have pretty nasty FM, so a prescription for lyrica has been good for me. I have been on it for at least 5++ years and no side effects (after getting used to it, of course).

The reason I had side-effects with gabapentin was the high dose I was started off on. Often doctors don't have more knowledge than we do about how much, or little of a new drug will work. Thus it was true of gaba.

Now with two doses of lyrica (75 mg. in a.m. & a 75 mg. dose an hour before bedtime) I've been fine. It does help the pain immensely and even though I'm not the world's greatest sleeper, it also doesn't interfere. (I have other neurological problems). The cream was in addition to that dose for breakthrough pain. One does have to be patient when trying new drugs....side effects often wear off and what's left is pain relief.

I have tried acupuncture, massage, PT and have found that acupressure works best of all. Acupuncture was tried 3 different times for an extensive period of time. I also take vitamins, supplements, herbs and other drugs for other problems. (I'm 75, so cardiac problems can come into play).

No one can ever give you a direct answer b/c each body is a different one. We just keep trying. FM is a miserable thing to have on top of everything else....but now I feel it's under great control. Yours, Lenora

 

[HRManager]

I have fibromyalgia and it really helps with the 'nerve' pain from that. I have been on it for years and currently take what is basically the max does - 600 mg 4 X daily.

 

[vision blue]

I have fibromyalgia and it really helps with the 'nerve' pain from that..

Glad to hear that for multiple reasons. Do you find it helps anything else? better sleep? less overactivation? help with other pains besides the fibro? any sense of wellbeing?

its really great that it's still working after all this time.

so i wonder in what ways were are similar metabolically to both be helped. Do you know how your dopamine levels are? (mine are high) and do you tend to have sympatheitic over activation and alot of norepinehrpine? (at least before you wrere on the med)

 

[lenora]

Hi @visionblue....I can't answer a lot of those questions. I wish I could, but I don't bother to have test after test done any longer....

Just a few weeks ago, I noticed that I was sleeping better and this has gone on for quite a long time (especially for me). I hope I haven't just jinxed myself by writing this! Perhaps the healing process is exhausting me...I don't know, but I'll take and keep it. I don't know if the jolt of the fall did something, or my body is healing but after basically 35 yrs. of erratic sleep, I'm getting at least 6 hrs. per day/night.

Sometimes the answer is simply this: there is no answer. Our bodies are so individual....whereas one person is almost unconscious from a med, another (like me) may be activated for days at a time. I've been told this isn't uncommon among individuals, but I do know that we all want a good night's sleep. I hope you'll soon have yours. Lenora