Dextromethorphan/quinidine is the bomb!

[tajmom]

So about a month ago my neurologist put me on dextromethorphan (sp?) with quinidine for emotional lability. It seemed to help but I wasn't sure how much. Anyway, a couple of days ago we ran out because my husband forgot to call in for my refill. WOW -- almost immediately the crying and giggling and irritability returned, including a full-on fit of hysteria last night. I will never doubt again; this stuff is the miracle drug for me. I hope my new supply will arrive today (otherwise I'll have to chug some cough syrup). Is anyone else taking this?

 

[halfin]

I've been on the DM+quinidine, also known as Zenvia, for about 3 weeks now and it is working well for me too. Previously I was on Xanax for EL but it was making me sleepy and seemed to be losing effectiveness after a couple months on it. Transitioning off the Xanax was hard, I felt wired, jumpy and sick for several days. That was not a good drug for me. But the Zenvia seems to be working fine. It does not control 100% of the EL but is better than the Xanax and helps a great deal.

It has to be made by a compounding pharmacy. It is not yet FDA approved for EL but the recent clinical trial was apparently successful so hopefully approval will come eventually. It is not too expensive, costing me $45 a month and I think insurance is paying only a small amount extra.

 

[t34gib]

I was in the final phase of the drug trial for this and was on the placebo for the first three months. Dr. new immediatley that I was because I had no control. Within a few days on the real stuff, perfection. I now take it and it controls everything. It has been approved by the FDA and should be on the market next year. Good stuff.

 

[BethU]

Yes, I was in the clinical trial, and am now getting the compounded version. At some point in the trial, I got a bad batch (maybe the placebo by mistake) and knew immediately. I told the trial people, but they didn't believe me until I had a meltdown in the office. Scared the heck out of them. My next batch was the real thing again, and I've been on it ever since.

The doctor has just increased my dosage as I'm having a few breakthroughs ... nothing violent or extreme, but embarrasing to lose control. Like you, taimom, I think it's a miracle drug and has made all the difference. EL really had me whipped.

 

[Erica]

I would appreciate if someone can let me know the dosage of dextromethorphan, so I can ask my neuro for a script. THX,Erica

 

[tajmom]

Erica, mine is 30 mg DM/10 mg quinidine.

 

[BethU]

Mine's currently 20 mg DM, 10 quinidine, but the doctor just upped the dosage as I've been having mild break-throughs of EL. Apparently, the 20 mg DM is lower than the trial dosage.

Don't know what the new dose will be ... probably 30 mg.

 

[Erica]

BethU, Tajmom, Thank you very much for sharing this info.
Best wishes,Erica

 

[halfin]

My pills are 30 mg DM, 10 mg quinidine, however I TAKE TWO PILLS A DAY. So the daily dosage is twice this. The quinidine is supposed to slow down metabolism of the DM so it stays in your system all day, like a time release medicine. I would imagine you could get much the same effect by sipping cough medicine all day long, arranging to take 60mg per day. However be aware that cough medicines often have other ingredients which could cause dangerous side effects. I found a page, aimed at people who want to use DM recreationally, that cautions about this issue and lists the active ingredients of a bunch of products so you can see which ones are pure DM:

Erowid DXM Vault : Guide to DXM in Non-Prescription Drugs

 

[tajmom]

You're right Hal, I take two doses per day also. My understanding is that the quinidine helps the body retain the DM longer so it is more effective. Just read online that the mfr of Zenvia just reported good results from their trial. The trial dosage was 30/10.

 

[BethU]

I also take two pills for a total of 60 mg. The neuro said the trial dose was 30 mg twice a day, but the FDA in approving it said, "Let's make it 20 mg." So when it gets on the market for ALS, it will probably be recommended at the lower dose. But 20 mg jus didn't work completely for me.

Good old FDA. (Foolish Dosage Adjustments)