Horizant

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.

Horizant

Postby ViewsAskew » Sat Mar 02, 2013 1:32 pm

When I met with Dr B last week, he has noticed that even if gabapentin and Lyrica didn't help someone, that Horizant is likely to work. I wasn't very optimistic - I mean, so far, I've taken a lot of drugs, alone and in combo, and have had limited success. Some things do work, but at such a high cost in terms of side effects. He suggested that we might be able to significantly reduce the amount of methadone I take - at least by half. And given that I take 20 mg at minimum per day, and often need another 5 mg, reducing that seemed a good thing to do. He also noted that there are new trials in place to see how much of it can be used. It was approved for one a day, but he sees that some people, with more severe symptoms, need two. He felt that some people might actually need 3 to control it all day, all night.

I also believe it's really important to try things when a very helpful doctor asks, and you can. It's not like I had to stop my current drug.

First perceptions - Sleep-baby-sleep
First night I took it, I slept until noon - and I was not in my time zone. It was 2 PM in my time zone. It really knocked me out. Second night, the same. Then I re-read the instructions. Or maybe read them the first time. I clearly hadn't listened in the office. Take it at 5 PM, the literature says. His notes, printed out and given to me by his staff, say to take with dinner. It's actually released in the bowel - probably why you need to take it a bit earlier than other drugs to prevent extreme morning lethargy. That said, even taking it at 6:00 to 6:30 - earlier than my dinner, but about midway between 5 PM and dinner - it's a struggle for me to get up after 9 hours of sleep! And I often do not awaken for at least 6 hours. That's unheard of for me. It feels like good sleep, too, something I like. But, when I awaken after 7.5 hours, I can't often open both eyes - I'm so sleepy that I open one eye partially and the other seems fused shut.

Daytime lethargy is definitely a side effect. I've been taking Nuvigil to counteract. It works OK, but have needed a cup or two of full-strength coffee, too, something I rarely drink. Caffeine has never made my symptoms worse, it usually just makes me incredibly wired. Even with the Nuvigil, two cups barely affects me. Supposedly, for most people, this goes away after two weeks.

First perceptions - Is My RLS Worse?
Excited that I might reduce the methadone, the first night I took only 15 mg of methadone and went to sleep. I was so drugged that I'm guessing I wouldn't have awakened if a bomb went off, let alone for some WED symptoms. That next day, though, I had to take my first dose earlier than normal - like right after I got it. I needed 25 mg that night.

Each night since, I've tried to taking 15 mg and waiting until an hour before sleep to determine if I need another 5 mg. I have. I emailed Dr B on the 5th night and said that so far, I'd had no reduction. He said to add a second tablet.

The first night taking 1200 mg, I was totally knocked out - it started to come on very strong about 4 hours after I took it. I was very tired, starting to have trouble keeping my eyes open, then I got dizzy and nauseous. I barely made it to the bed. I didn't get out of bed until 11 hours later. Boy, can that stuff knock a person out! But, I still needed 20 mg. And, at this point, I realized I was starting to feel mild symptoms all day long. I had mild symptoms in my sleep, too.

Yesterday, I awakened at 10 AM and couldn't open both eyes - that was, I think after 7 hours of sleep. I took a Nuvigil and went back to sleep, thinking it would awaken me shortly. At 11:30 I woke up because hubby was in the bedroom. I immediately fell to sleep again. I didn't get out of bed until 12:30 and could have stayed - I FORCED myself out. Score 1 for Horizant and 0 for Nuvigil.

This is night 3. I took 5 mg of methadone immediately upon getting out of bed yesterday - awakened with symptoms. I set out a total of 25 mg, knowing I was likely going to need it. At 3:30 AM I fell asleep having only used a total of 20 mg, thinking it would be OK. It wasn't. I was rudely brought out of a deep sleep by symptoms. I hate it when you have this vague knowledge that you're going to have to wake up but you are in such a deep sleep, that you immediately fall asleep again. After two more awakenings, with me progressively becoming more awake, I was awake enough to realize I had to get up and take another 5 mg. That was an hour ago. I've still got symptoms - they are mild now, but if I tried to sleep, not sure I'd be able to So, do I need to take 5 mg from today's dose already????? That's not good.

Second Perceptions - Not Sure 1800 MG Is in My Future
I actually LOVE the way I sleep taking this. But, it's an awfully expensive sleep aid! And, the daytime lethargy is a bit more than I want to deal with, along with requiring a minimum of 9 hours to be able to even get out of bed. Now, supposedly this goes away for most people after two weeks. Not sure how upping the dose affects that - do I have two weeks from upping the dose?

It could be that it's the week before my menstrual cycle. I'm a bit irregular and it's been at least 2-3 weeks, so maybe it's coming a bit early. That does always make symptoms worse. If my period starts in the next few days, I'll know it was that. If it doesn't, then this seems very problematic.

More importantly, to me, even if the increased symptoms are from hormones, the a double dose of the drug is not having ANY impact on my symptoms.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
ViewsAskew
Moderator
 
Posts: 11588
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Horizant

Postby cornelia » Sat Mar 02, 2013 2:48 pm

I recognise the deep and long sleep when I started Neurontin and also the next day lethargy. It took a long time, maybe even a few months, for that to go away, but I had no other choice at that time. Every time that I take 1 extra Neurontin in the afternoon (strange, it gives me a bit more mental energy) I notice that I can sleep for 45 minutes after dinner. It is a deep sleep and I love it. I don't notice that deep sleep anymore when I take 900 mg at midnight after al these years. Maybe I should stop it because it isn't really working anymore I think. So, I think the side effects will wear off in time I hope. Not good when you have to work.

To be honest I have never thought that Horizant will work really well for the most severe patients. Of course I will try it when we are able to get it in my country but I have no high hopes.

I really think that stopping an opiate for say 5 weeks and restart it will be the ony chance of getting to a lower dose, but who wants to do that? You have taken other opiates. Did you notice that opiate rotation worked in that that you could use lower doses?

Corrie
cornelia
 
Posts: 939
Joined: Tue Mar 23, 2004 1:40 pm
Location: the hague the netherlands

Re: Horizant

Postby jakesmom » Sat Mar 02, 2013 3:00 pm

I am so glad you started a post on this topic.

I take 600mg at night. I didn't sleep at all the first night, so I attributed the daytime sleepiness to a cumulation of lack of sleep. Thursday and Friday at work were horrible. I dozed off numerous times from 9 am to noon. Thank God I caught myself as my head was dropping and no one noticed. I gave up caffeine in December, aside from the occasional chocolate binge, so strong coffee is not an option.

Please tell me I don't need another medication to counter act the side affects of this one? I am going broke paying for medication.

I already had to go back on pramipexole at a lower dose because the Horizant isn't helping my daytime symptoms.

Taking off your Moderator hats, what do you think? Should I stay on Horizant, taking it earlier to avoid next day sleepiness and continue with the low dose of pramipexole for daytime symptoms OR should I stop the Horizant, go back on the pramipexole (continuing to stop the Sinemet) on a split dose and make do until I can get into new doctor later this month?
Dozing off at work or being too tired to focus is not an option. I need my job and people deserve to have their documents prepared correctly.
jakesmom
 
Posts: 342
Joined: Sat Feb 09, 2013 11:01 am

Re: Horizant

Postby ViewsAskew » Sat Mar 02, 2013 3:44 pm

Honestly, jakesmom, not sure you can make ANY decisions yet. You have no idea what you're dealing with. You may have a lot less severe symptoms once you're off the Mirapex. Until you are able to do that and it stabilizes, I think you're just in a holding pattern.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
ViewsAskew
Moderator
 
Posts: 11588
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Horizant

Postby ViewsAskew » Sat Mar 02, 2013 3:48 pm

cornelia wrote:I recognise the deep and long sleep when I started Neurontin and also the next day lethargy. It took a long time, maybe even a few months, for that to go away, but I had no other choice at that time. Every time that I take 1 extra Neurontin in the afternoon (strange, it gives me a bit more mental energy) I notice that I can sleep for 45 minutes after dinner. It is a deep sleep and I love it. I don't notice that deep sleep anymore when I take 900 mg at midnight after al these years. Maybe I should stop it because it isn't really working anymore I think. So, I think the side effects will wear off in time I hope. Not good when you have to work.

To be honest I have never thought that Horizant will work really well for the most severe patients. Of course I will try it when we are able to get it in my country but I have no high hopes.

I really think that stopping an opiate for say 5 weeks and restart it will be the ony chance of getting to a lower dose, but who wants to do that? You have taken other opiates. Did you notice that opiate rotation worked in that that you could use lower doses?

Corrie


No high hopes, here! But, possible for some, maybe.

I was off opiates for about 4-6 weeks - didn't change the dose at all. Then I rotated through 4 or 5 of them for several months. It didn't change anything, either.

Taking a dopaminergic does lower the dose, significantly. The side effects are not tenable to me, and I can't do it every day anyway.

Looks like it's likely I'll be taking the full dose of methadone for yet a bit longer.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
ViewsAskew
Moderator
 
Posts: 11588
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Horizant

Postby Polar Bear » Sat Mar 02, 2013 4:29 pm

Ann, thank you for this thread. I have not used any of the drugs mentioned but I'm sure that that for others this information will be invaluable.
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
Polar Bear
Moderator
 
Posts: 5091
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Horizant

Postby jakesmom » Sat Mar 02, 2013 9:13 pm

Not to be stupid, but how can you tell the difference between depression and exhaustion or reaction to a drug? I have been on Horizant for 3 days, I am tired, cold, and just want to curl up in a ball and cry. What is wrong with me? Could this be the Horizant? I know I have been tired for awhile, but the cold and crying thing is new.

Anyone else have this or am I losing it?
jakesmom
 
Posts: 342
Joined: Sat Feb 09, 2013 11:01 am

Re: Horizant

Postby ViewsAskew » Sat Mar 02, 2013 10:29 pm

jakesmom wrote:Not to be stupid, but how can you tell the difference between depression and exhaustion or reaction to a drug? I have been on Horizant for 3 days, I am tired, cold, and just want to curl up in a ball and cry. What is wrong with me? Could this be the Horizant? I know I have been tired for awhile, but the cold and crying thing is new.

Anyone else have this or am I losing it?


Tough to say, but, yes, this could be the drug. There is a very small, but serious risk of depression and suicidal thoughts when taking it. I'd suggest that you Immediately call your doctor or a pharmacist. Beth, one of our mods, went through this with regular gabapentin.

http://www.webmd.com/drugs/drug-155815- ... genumber=6
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
ViewsAskew
Moderator
 
Posts: 11588
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Horizant

Postby jakesmom » Sun Mar 03, 2013 12:48 am

Thanks Views!!!

I called the pharmacist. He said he wasn't that familiar with Horizant since it was relatively new but he knew a lot about gabapentin. He said the doctor should have warned me about daytime sleepiness, especially since this is a controlled release. Also he said I wasn't on a high dose at 600mg, but it wasn't low either. His suggestion was to call her Monday and ask for a lower dose of plain gabapentin and titrate up. He said I could go off it with no problem since I had only taken it 3 days.

I am going off it and back to pramipexole until I can get in to see sleep doctor. I think I am done with the neuro. She isn't very informative.

I am so thankful I didn't have to buy the Horizant. The neuro gave me 45 days of samples.
jakesmom
 
Posts: 342
Joined: Sat Feb 09, 2013 11:01 am

Re: Horizant

Postby ViewsAskew » Sun Mar 03, 2013 1:26 am

Regular gabapentin works a bit differently - it isn't absorbed as easily and the higher the dose, the less is absorbed (weird, huh), so it can be hard to make it work with someone who has severe symptoms.

That said, you may not have severe symptoms is a couple months. Hang in there with the Mirapex. It won't be any worse than it was when you came here - and reducing some things may even make it better.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
ViewsAskew
Moderator
 
Posts: 11588
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Horizant

Postby branti » Sun Mar 03, 2013 2:37 am

This may sound silly, something I should know, not evenn sure if I should post this here. How does Lyrica work compared to Gabapentin? I used to take Gabapentin but was switched to the Lyrica. For years it seems to have worked but now I'm going through a crisis since my hip surgery. Does the Horizant replace these drugs? Is it available in Canada yet?
branti
 
Posts: 12
Joined: Wed Oct 17, 2007 5:40 pm

Re: Horizant

Postby ViewsAskew » Sun Mar 03, 2013 5:11 am

This sitehas good, I think, info about Lyrica and gabapentin.

Horizant is very similar to them both. There are issues with gabapentin and absorption at higher doses. That is avoided with Horizant. I wouldn't say it replaces the other drugs - likely they each have specific benefits.

No idea if it's approved in Canada.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
ViewsAskew
Moderator
 
Posts: 11588
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Horizant

Postby jakesmom » Sun Mar 03, 2013 10:24 am

So, I went off the Horizant. Didn't sleep worth a flip, but maybe that also means I won't doze off during the day. I haven't touched the Sinemet in 4 days and I cut my pramipexole down to .5 mg in the morning and 1 mg at night. Knock on wood, WED seems to be under control. I may bring back the Ambien to help me sleep. My head is pounding, lack of sleep perhaps.

I can't wait for my appointment with the new doctor.
jakesmom
 
Posts: 342
Joined: Sat Feb 09, 2013 11:01 am

Re: Horizant

Postby badnights » Tue Mar 05, 2013 9:03 am

jakesmom wrote:Not to be stupid, but how can you tell the difference between depression and exhaustion or reaction to a drug?

I can't!! I wonder all the time.
jakesmom wrote:I am tired, cold, and just want to curl up in a ball and cry. What is wrong with me? Could this be the Horizant?

As Ann mentioned (and sorry I was not on this forum sooner) I got suicidal from gabapentin. First I just experienced wild emotional swings, especially if I was a little late with the meds, but then I began to have suicidal episodes, 3 bad ones in total (didn't reach the point of trying anything, though). I had to keep taking it until I could connect with a doctor who would take me off it and replace it with something.

So possibly your emotions are caused by the Horizant. And it's probably a good thing you got off it. If your emotions have stabilized, you cna be fairly sure. That does not mean other anti-convulsants are a bad choice, though, apparently. Maybe I would avoid gabapentin if I were you, since Horizant is a gabapentin pro-drug (meaning, in my lay interpretation, that it turns into gabapentin within the body). (Although Ann did mention that Dr B implied that there would not necessarily be a problem?).

Don't forget to bring information on augmentation to your doctor appt! He can learn while you sit there. He NEEDS to know about it, because you're augmenting and you NEED to get off the Mirapex. I think :)
Beth
AUGMENTATION http://www.willis-ekbom.org/document.doc?id=2324
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board moderator's posts do not represent the opinion of the WED Foundation & are not medical advice.
badnights
Moderator
 
Posts: 3009
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Horizant

Postby badnights » Tue Mar 05, 2013 9:25 am

branti wrote:How does Lyrica work compared to Gabapentin? I used to take Gabapentin but was switched to the Lyrica. For years it seems to have worked but now I'm going through a crisis since my hip surgery. Does the Horizant replace these drugs? Is it available in Canada yet?

all three are anti-convulsants, which is one of three classes of drugs used to treat WED/RLS. (The others are dopamine drugs and opioids). Lyrica is a brand name for an anti-convulsant called pregabalin, Neurontin is a brand name for gabapentin. They act similarly but not the same. Gabapentin is absorbed erratically so pregabalin is often recommended instead, although there have been a few more studies done with gabapentin than pregabalin.

Horizant is the brand name for an anti-convulsant called gabapentin encarbil, which was developed to circumvent the absorption problem. It is a pro-drug of gabapentin, meaning it turns into gabapentin only after it has been absorbed into the body. (This is an over-simplification, but it's my best understanding right now without actually looking it up.) It's really new, doses still not figured out, etc.

I don't know if Horizant is available in Canada, even tho I live here. I will ask my specialist when I see him in two days (so excited). If I remember.

(Not silly, not something you should already know, definitely something you should post here :) :) )

Having RLS/WED get worse after surgery, especially a bone surgery, is very common, and has been noted in the medical literature. No reasons are known, though one article suggested maybe the blood loss cause an iron crisis of some sort; also heard someone on the board speculate that maybe exposure to opioid pain-killers afterward might somehow trigger it.
Beth
AUGMENTATION http://www.willis-ekbom.org/document.doc?id=2324
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board moderator's posts do not represent the opinion of the WED Foundation & are not medical advice.
badnights
Moderator
 
Posts: 3009
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Next

Return to Prescription Medications

Who is online

Users browsing this forum: No registered users and 1 guest