Horizant not really useful

[CranberryMix]

Day 12 of Horizant 600 mg. Taken at 5 pm with fatty meal.

First 2 nights, I slept. Now I don't. And, like others, I seem to have insomnia from this drug. Awake all night. Also, on top of the Restless Leg, I have this itchy allergic feeling all over my body, not just my legs.

The literature says it takes 30 days for best result. Don't know if I can make it that long.

I was using Mirapex (just 1/2 tab) combined with 300 mg of Gabapentin. That works for about 6 months. Then breakthrough and need a drug holiday of a week. But, it's getting SO hard to withdraw from even the 1/2 tab of Mirapex that I hate to go through it. That's why I am trying the Horizant. But I don't think I will make the 30 day trial.

[SueJohnson]

Was there a reason you went with Horizant rather than staying on gabapentin. Usually it is prescribed if you have RLS all day. If you didn't have the side effects you are having now on gabapentin and you don't need it all day, you might want to go back on gabapentin. 300 mg is just a starting dose. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you decide to go back on gabapentin it won't help much until you are off Mirapex for several weeks. Once you are off Mirapex for a few weeks, increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. As far as getting off the Mirapex, try taking just a quarter tablet. You may need a low dose opioid temporarily as it is hard getting off it. Also have you had your ferritin checked?

[CranberryMix in reply to SueJohnson]

THANK YOU, Sue!

I had been on Mirapex for about 8 years, gradually upping the dose till I was at 4 tabs (0.25 mg per tab). At about the 8-year mark, the augmentation was causing the RLS to show up during the day and not controlling it at night.

Next step was to drug holiday for the first time - off the 4 tabs - which was so painful.

I didn't want to go back on the Mirapex ever again, because I didn't want to experience the withdrawal again (although I did go back on it, in a lower dose).

Then my doctor started me on Gabapentin - but I only ever got to 900 mg. She started me at 100 mg and I gradually kept increasing. But I didn't know you could go higher than 900 mg. At 900 mg, the RLS was somewhat controlled but I still was awakened by it 1 or 2 times/night. Then I would walk for 15 minutes and go back to sleep. I THOUGHT that adding 1/2 tab of Mirapex to the Gabapentin might just help me sleep through the night.

However, Doctor did not like mixing the drugs.

sooooooo

I weaned off the Gabapentin. She said that once I was down to 400 mg, I could start the Mirapex (and she expected me to completely go off the Gabapentin). However I kept the Gabapentin at 300 mg with the 1/2 tab of Mirapex and that worked. But I still needed to drug holiday after 9 months, then after 7 months, then after 6 months.

And each time, even though I was only withdrawing from a half tab of the Mirapex, it was a difficult few nights of rocking on the floor and no sleep.

That is why I thought maybe the Horizant would be better.

But now I seem to be experiencing side effects from the Horizant. And no, at the point of starting Horizant, I didn't have symptoms during the day. Not often anyway. Plus, the Horizant is not even available in Canada, and I had to order it from the USA and it is not covered by my health plan.

So, I am thinking that the best course is what you suggested: going back on the plain Gabapentin, and gradually increasing until the RLS is controlled. Like this: "Once you are off Mirapex for a few weeks, increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime."

This sounds hopeful. THANK YOU!

One more question: I have been completely off the Mirapex for about 6 weeks now. Why does being on Mirapex at the same time as Gabapentin make a difference to the effectiveness of the Gabapentin?

[SueJohnson in reply to CranberryMix]

I'm afraid I don't know the answer to that.

[CranberryMix in reply to SueJohnson]

UPDATE:

After 2 weeks of Horizant, I got off it. Doctor said it's not doing anything anyway. In fact, it seemed to be causing upper body tremors.

Then I started on 600 mg of Gabapentin at 8 pm - with 100 mg at 6 pm. For a total of 700 mg.

Did that for 3 days.

then increased the 6 pm dose by 100 mg - for 3 days at a time. And so on.

until, I am currently at a total of 1100 mg - with 600 mg at 8pm and 500 mg at 6 pm.

and I AM SLEEPING THROUGH THE NIGHT!

Thank you so much, SueJohnson!

[SueJohnson in reply to CranberryMix]

That is great !!! I am so pleased for you.