Anyone with Lyrica/pregabalin experience?

Medication 💊 Anticonvulsants
1

I’m starting to think my GP is a good guy after all. :smiley:
I told him about MAV, how it matches me, that I’d talked to people on this forum and others, etc. I’ve been researching possible meds, and suggested we try Lyrica first. I realize it’s not the first-line med around here, but most or all the others don’t fit me (can’t take serotonin-meds, have quite low blood pressure). Anyway, he agreed and wrote me a script for 3x50mg a day to begin with. :slight_smile:

I’d love to hear others experiences. So far (after two doses) I haven’t noticed any positive change, not that I was expecting any so soon. I have however felt nauseated, almost exactly 30 minutes after taking a dose (with food). Will this usually go away or not? Also, how long should I expect to wait to notice positive change?
Thanks in advance :slight_smile:

2

If my memory serves me, I believe Adam is taking Lyrica ?? I’m on Neurontin, which is close to Lyrica (Lyrica is supposed to be more potent, with few side-effects). I’ve had good improvement with Neurontin, noticed them pretty quickly, and no side-effects. I have heard that some suffer GI probs with Neurontin. The other thing I’ve learned from people who have choice but to take ACs, is that the side-effects often disappear once they have titrated up to their target dose, or at least they lessen.

Dr. Hain in Chicago told me via email that he does not use Lyrica much, has not had very good results. He does, however, use Neurontin occasionally. Topamax and Effexor make up 80% of his practice.

I’m glad your GP is open to you. Good luck with this maze of meds. Each of us is different. I’m interested to hear what others have to say. BTW, I have very low blood pressure also, but I’m on Zoloft, which has not effected my BP at all. I had no idea that was a contraindication. I’m also bradycardic, which knocks the CCBs and BBs out of the game for me.

Jul

3

— Begin quote from “Julie”

If my memory serves me, I believe Adam is taking Lyrica ?? I’m on Neurontin, which is close to Lyrica (Lyrica is supposed to be more potent, with few side-effects). I’ve had good improvement with Neurontin, noticed them pretty quickly, and no side-effects. I have heard that some suffer GI probs with Neurontin. The other thing I’ve learned from people who have choice but to take ACs, is that the side-effects often disappear once they have titrated up to their target dose, or at least they lessen.

Dr. Hain in Chicago told me via email that he does not use Lyrica much, has not had very good results. He does, however, use Neurontin occasionally. Topamax and Effexor make up 80% of his practice.

I’m glad your GP is open to you. Good luck with this maze of meds. Each of us is different. I’m interested to hear what others have to say. BTW, I have very low blood pressure also, but I’m on Zoloft, which has not effected my BP at all. I had no idea that was a contraindication. I’m also bradycardic, which knocks the CCBs and BBs out of the game for me.

Jul

— End quote

Hi Julie :slight_smile:
How quickly is “pretty quickly”? A couple of days?

I considered Topamax but it seems a majority complain about the side effects rather than praise it for the help. I’m kind of scared of Effexor as well, from all I’ve heard about the withdrawal.

My post was a bit unclear, I can’t take serotonin-related meds because I’m already on two. I can’t take BB’s/CCB’s because of my blood pressure.
On the other hand, Fluoxetine (that I’m on) isn’t better than placebo for migraines according to a trial, so I’ll probably try to get off that sooner or later, to open up the possibility of taking Zoloft, amitriptyline, pizotifen and others. It doesn’t seem to be doing anything for my anxiety that I’m taking it for, anyway.

4

Hey,

I knew by the time I titrated up to 300 that it was doing something, that took 3 days. since then, i’ve added 100 mg every two days and i have continuing improvement. I’m at 900 now and my doc wants me to stick there for a week to give it a chance. What I read in the PI sheet about Neurontin is that you should see an effect 3 days after you’re at a therapeutic dose. The question is, what is the therapeutic dose for migraine? Therapeutic dose for many conditions is 900 mg, but Dr. Carey at Hopkins suggests going up to 1800 mg if needed.

Lyrica is like Neurontin in that is a GABA analogue. Pfizer came out with it just as they were losing the patent on Neurontin. So it’s their new and improved Neurontin, they’re hoping Neurontin patients will switch to Lyrica. So they are similar in being GABA analogues, but they are different drugs. I chose Neurontin because Dr. Hain uses it.

I’m with you regarding Topamax and Effexor. If Neurontin doesn’t do enough for me, I will add Topomax and see what happens. If that doesn’t work out, i’ll go off the Zoloft and go on Effexor as a last resort (at least that’s my plan at this point). I’ve heard that Effexor is a drug which, once you’re on it, you’re on it for life, because of the severe discontinuation syndrome. I’ve also read that the reason the discontinuation syndrome is so bad is because, due to an extremely active metabolite of Effexor, you’re actually withdrawing from two different drugs. You start withdrawing from Effexor and that’s going okay, and then the second withdrawal syndrome kicks in. But, my illness is so bad, at it’s worst, that I am resigned to being on meds for the rest of my life and whatever works, I will do. (BTW, this is a desparate change in attitude for me. I wouldn’t even take aspirin up until this illness hit me - I’ve been drug free for most of my 54 years.)

I know I’ve probably given you more information that you’re looking for. You want to know “when is this thing going to start working??” I’ll say again, Neurontin is supposed to start working within a few days after reaching therapeutic level. Since Lyrica is a newer drug, I can’t find as much information from people who are actually using it.

I could swear Adam said he was using it with good result. Maybe he can help you out with this question.

Hope this helps,

Jul

5

That’s a lot of info, thanks! :slight_smile:
Yes, I noticed Adam posted something positive about Lyrica.

I’ve got a baad headache right now, ugh! I’m trying to figure out why. Might be the ham I had for lunch, but I had (in part) that for dinner yesterday with no headache… On the other hand, I didn’t exactly feel great yesterday either (not that I ever do, sorry for whining). Also, it might be pretty much random.
I’m too tired to write something worthwhile at the moment. In any case, I’ve got a phone appointment the 23rd to see how things are going, and he told me I could call in earlier if I wanted to. I suppose that if nothing’s changed by then, a dosage increase is in order.

6

Tran,

I read in the Buccholz book that the tricky thing about trying to figure out food triggers, is that there can be a delay between when you eat the food and when you get the headache. Also, it can take 3 months to get the junk out of your system, so if you quit a food and still get headaches, it could be that it’s still working on you.

I’m doing the diet, strictly, but i have to tell you, i think I would rather just take a pill. I’m feeling better, but is it the Zoloft/Neurontin or the bananas? :slight_smile:

Good luck with your phone call, for me, I’ve had to call on my reserves of patience. I keep telling myself, I’ve been sick for years, I can wait it out for a few months to see if this med works.

Jul

7

Hello

I am actually taking Neurontin - but did switch to Lyrica at one stage. I went back to Neurontin because I found I had finer control over the dosage, since it is safe up to about 4800mg/day and comes in capsules as low as 100mg. I think Lyrica on the other hand requires much lower doses, but the known safe limit is quite low (600mg) and the capsules I had were 75mg.

Both of them worked well for me.

Robsydney here on this forum uses Lyrica with success - and it sounds like he went through a hell of a long process finding that it was the right drug.

Adam

8

Adam,

You probably already know this, but for anybody else who is interested, according to the patient information sheet for Neurontin:

“As dose is increased, bioavailability decreases. Bioavailability of gabapentin is approximately 60%, 47%, 34%, 33%, and 27% following 900, 1200, 2400, 3600, and 4800 mg/day given in 3 divided doses, respectively.”

So if my math is correct:

at 900 mg you’re getting 540 mg
at 1200 mg you’re getting 564 mg
at 2400 mg you’re getting 816 mg
at 3600 mg you’re getting 1188 mg
at 4800 mg you’re getting 1296 mg

No wonder it’s considered safe up to 4800 mg. Just thought that was interesting.

Julie

9

Adam, robsydney and other who have taken Lyrica: How was it in the beginning? If you started from zero that is, cross-tapering or such might not be the same. Still, I’m interested in your experiences.
I’m on day 5, and feel… Well, not good. Second day of treatment I had a really bad migraine and went to bed a bit early, and slept for more than 13 hours. I didn’t blame the med, though, but I’m not sure. Yesterday evening I felt pretty crap again, slight headache, not that bad, but I was pretty nauseated instead. I feel less-than-great now too. :frowning:

About how long should I expect to wait until I should’ve noticed a positive change? And, did you notice a change before upping the dosage? I’m still at 3x50mg and am supposed to stay on that until I talk to my doc about how things are going, the 23rd.

10

Hi Tranquillity,

I have been on Lyrica now for about two months. I didn’t cross taper. I was on lamotrigine prior to starting Lyrica and have kept taking the lamotrigine with the Lyrica. Lyrica has been by far the most helpful medication for me. Like most people’s experience with various meds, it has not ben a cure. However I am extremely thankful that my neurologist suggested it. It started to work very quickly for me - within a day or two. However, then the effect wore off very quickly as well and I had to increase the dose. Since then I have adjusted the dose until I found the best one for me: I take 300mg at night. I find taking it during the day makes me too drowsy to work, and taking more than 300mg at night makes it very difficult to get out of bed in the morning. I didn’t experience nausea. The main initial effect was drowsiness.

Don’t despair tranquillity. Some people respond quickly to meds, others slowly. Keep trying until you have been on a reasonable dose for a while. I think 300mg a day is considered a fairly significant dose. On the other hand, though, don’t persist with something for too long if it doesn’t work. These disorders really mess your life up, and almost four years of mine were misery until I recently found some relief. Good luck and let us know how you go.

11

Great, thanks!
Does taking it all at night work as well as splitting the dose? With a half-life that short, it seems to me it shouldn’t work, heh, but lots of people do it so I guess it does work. :smiley:

— Begin quote from “robsydney”

On the other hand, though, don’t persist with something for too long if it doesn’t work. These disorders really mess your life up, and almost four years of mine were misery until I recently found some relief.

— End quote

Exactly! I’ve been taking it for one week now, and no positive change (although I’ve had negative change, ugh). One week is not a long time, but I feel like it’s time to give up already. :?

In any case, I’ve started tapering on my fluoxetine. One, it’s not doing much good at all, and two, coming off that opens up the door for many meds that actually help against migraine (such as nortriptyline/amitriptyline, pizotifen etc).

1 Like
12

I don’t know whether taking it at night works for everyone. I know alot of people who take it for chronic pain have it all at night. Sometimes the half-life doesn’t necessarily equate to how long the drug’s effects on the central nervous system persist. With all these things its trial and error. And we have had enough stories on here to know that these disorders are not one size fits all, and in fact they often don’t obey the normal rules we expect of an illness. Like, for example, some people get a remission with drug X, and then it wears off, or they stop it, and then if they try the drug again, it doesn’t work. Its one of those many, many things that make alot of doctors think that we are all mad.

13

Rob,

I’ve been wondering about this: You mention that often a person with MAV will have some relief of symptoms for a short time only. With both drugs I’ve trialed, Zoloft and Neurontin, I had the biggest improvement right at the start. On titrating up, definitely with Zoloft and possibly with Neurontin (too soon to tell yet), the rate of improvement levels off. When I noted no further improvement with increasing Zoloft, and even a bit of a back-slide, i held the dosage (decision also driven by side-effects) but I wondered, and now I’m wondering again after reading your post, whether I was actually better off at a lower dose. I think more is not always better.

Julie

14

I have a confession to make…
I’m giving up already, after 8 days. Today is my THIRD migraine attack (i.e. pounding headache) since I started treatment. I didn’t keep perfect track of headaches before that, but I’m very sure that it wasn’t anywhere near this often. :frowning:
Besides, it makes me nauseated soon after taking the dose, tired like hell (I’m in bed 12-13 hours a day, yet tired daytime) and more. I really feel like this is the wrong med for me.

15

Hi Tranquillity,

I am sorry to hear that. Maybe you should try a lower dose. If you are getting so drowsy that you are sleeping 13 hours a day, the dose is too high. Alot of the time, you develop tolerance to the sedation with time, especially if you increase the dose very slowly.

16

Tranquility,

I posted this on another link, but I think it is worth posting again here, to ensure that you see it.

"The way ACs work, as explained by a neurologist through another contact of mine:

Your brain waves move along like waves in a swimming pool. They have a particular rhythm. Even if that rhythm is considered “off” from normal (different epilepsies, depression, mania, etc.), it is your rhythm. Your brain is accustomed to that rhythm.

The introduction of an anti-convulsant (of any type) disrupts that rhythm. If the dose given is out of sync enough with what actually was needed, the disruption can be great enough to “slosh water out of the pool” (so to speak) and actually lead to greater instability.

Conversely, even if the dose is “dead on”, the “shock” of the AC may only put the wave “right” for a brief time before inertia pulls it back to its original pattern.

Ideally, the AC will “shock” the wave into “normal”, and then a titration upward of said AC will keep that wave in place."

I have no idea the dosing of Lyrica, but as Rob says, maybe your dose is too high. SEs are expected during the titration, but will hopefully go away. But I also understanding bailing out on a drug. My SEs with Zoloft were so horrible I told my doc I was quitting. He talked me into lowering and stabilizing and going up more slowly. It worked. But I hit another wall, due to SEs and this time I’m holding the dose, no additional Zoloft for me unless the intensity of the arousal calms down.

Good luck,

Julie