horizant awful

[lorri214]

Today was my first day taking horizant and probably my last. I cant lay down for more than a secon d. I am in such agony. tomorrow i will go back on mirapex if my legs dont get better. since it is a long weekend o dr. is not available I am walking and crying all night long. I think I need a new dr. How many baths can a person take. so sorry for ranting. I dont know what to do. Its only 9"00 and I have to go on like this til tomorrow??? any suggestions

[ChrisColumbus]

I know that it's easy for me to say, I've never had to go through dopamine agonist withdrawal after so long on it, but please don't give up now. You've had so much good advice over the last few weeks from people who've been there and done it. The pramipexole is only just leaving your system and you've tried gabapentin for just one night. Hang in there, it'll be worth it. Hugs!

[LotteM]

Hi Lorri, if you stopped you mirapex without weaning down, it was not the Horizant, but the withdrawal from the mirapex that made you feel awful. Even if you had weaned down in small steps and you stopped your last dose, you still may get increased symptoms; the last parts are often the hardest. So either reduce (more) slowly, or bite the bullet and do stop your last dose.

If you can, keep taking a -not too high- dose of Horizant, as it takes often several weeks to become effective. And if you had only a tiny dose of mirapex left, maybe keep taking it until you have taken Horizant for 2-3 weeks as it may help better then. But still, stopping your last dose will very likely give you increased symptoms and mostly only an opioid (fairly strong one) will help during that transient time.

Good luck, you can do it and will be better eventually.

[lorri214 in reply to LotteM]

I started weaning off mirapex on 4/17 and stopped completely on 5/2. Was that too fast. Then last week I was going on vacation so dr. had me take 1 mirapax 2 hrs before bedtime and that helped. I didnt stop doing that until 5/22. So from 5/22 no mirapax. but taking the one mirapax on vacation definitely helped. It was a miracle. I want to try that again. but you are all advising against it.

[SueJohnson in reply to lorri214]

How much mirapex were you on before you started reducing?

[lorri214 in reply to SueJohnson]

3 tablets .125 each and 3 oxcodone 5 mg each

[SueJohnson in reply to lorri214]

No wonder you are suffering as you weaned off too quickly. You should have reduced by one half a .125 tablet every 2 weeks, which would have taken you 12 weeks instead of 15 days. I suggest you increase your dosage back to 2 and a half tablets, let your symptoms settle and then use the reduction schedule I outlined. If the symptoms settle more quickly than every 2 weeks then you can make your next reduction then.

[SueJohnson]

I agree with Lotte. Also up your dose of Oxycodone.

[Joolsg]

LorriDon't go back on Pramipexole. That is the road to permanent suffering.

Horizant takes 3 weeks to be effective. You are at the terrible stage of withdrawal and what you are experiencing is perfectly normal. It is hell. You want to throw yourself out of the window to end the suffering. But it DOES get better.

Keep taking the Oxycontin and stick with the horizant.

Every day off Pramipexole, the RLS will get a little better each day.

But do take camera video of your suffering and send it to your doctor. She needs to arrange that iron infusion for you.

Thinking of you and sending you strength.

[lorri214 in reply to Joolsg]

I already had the infusion. I cant do this. I can barely stand up. I am taking the oxycodone. Dr. said to take up to two. Yesterday I took 4. I was thinking of taking one mirapax like I did last week and no horizant. That was not as bad. This is pure hell. My husband wants to take me to the hospital. I am walking around moaning and crying. with the holiday i cant get in touch with my dr. til tuesda y. My dr. said the next choice for meds would be methodone or buprenorphine. im ready to switc h. Today I have a party to go to and i cant go like this. When will the rls let up? even the oxycodone is not working. I need sleep. HELP!!!

[Joolsg in reply to lorri214]

There is NO way you can work or attend social occasions during dopamine agonist withdrawal! It's worse than heroin or crystal meth withdrawal. Many people pay to go to a private rehab clinic.You need to accept that normal life is out of the question until you're through withdrawal. So take time off and rest whenever and wherever you can. Sleep in the morning, the afternoon, until you're off Pramipexole.

Look at the 'useful resources' on the RLS-UK website, print off the form and show to your GP next week.

Don't waste your time going to A&E. They know even less than GPs.

You will have little to no sleep and the worst RLS ever during withdrawal.

And get the Buprenorphine next week.

[lorri214 in reply to Joolsg]

what is A&E. Can you take buprenorphine when taking horizant. I got to do something. This is the worst thing that ever happened to me

[Joolsg in reply to lorri214]

Sorry. This is a UK based help forum. Accident and Emergency is the same as USA ER.

Yes, you can take buprenorphine with Horizant, but keep the dose of horizant and buprenorphine low. There have been a few cases of respiratory repression on higher doses.

Here in the UK we can get very low doses of buprenorphine. It starts at 0.2mg. In the USA, the lowest dose is 10 times ours. So, start with a 2mg pill and cut it in quarters. Start with 0.5mg.

And yes, we would all agree with you. Withdrawal from dopamine agonists is the worst thing most of us have ever experienced. That's why doctors need to stop prescribing dopamine agonists.

Take time off ALL social engagements and work until the withdrawals are over.

[Kumu1]

I use sinamet and sometimes a sleepy type of marijuana, only one or two inhales, not to get " stoned". It gives me 4-5 hours of sleep.I know that feeling too well. I have to put weight in a straight up and down manner on my hip joint, so standing or kneeling with straight hips is my relief.

On this routine for 13+ years.

Hope you get some rest and relief.

[Nikos64]

Hang in there … there’s light at the end of the tunnel. I’ve been through pramipexole withdrawal and it is hell. Please work with your doctor … it takes a while but you will get relief. As tempting as it may feel you cannot go back to taking a Dopamine Agonist.

[lorri214 in reply to Nikos64]

Most people said I went off the mirapex too quickly. Someone suggested I go back on a low dose of mirapex with the horizant for my body to adjust. Maybe 2-3-weeks. What do you think

[Birdland in reply to lorri214]

It took me a very long time to withdraw from a DA. It comes down to how badly you are suffering. There is no absolute right way to get off of DAs. The main thing is to get off of them. If you need to take a small amount of Mirapex for your sanity while withdrawing then that’s what you need to do. Just as long as you keep tapering. It is a very difficult process but can be done. BTW, at the worst part of my withdrawal I was taking 5 baths a night!

[lorri214 in reply to Birdland]

How long did it take you to get back to normal. I cant take it any more. I am the walking dead.

[Birdland in reply to lorri214]

Well, I was taking a very high dose of Ropinirole. I took it for 16 years, increasing the dose overtime, so I was an extreme case. I went from 8 mg to 1.5 mg in about 6 months then took a break and stayed on 1.5 mg for a year or so. Then I decided to face getting off completely. The last 1.5 mg withdrawal was more difficult than the first 6.5 mg. I went through hell for 5 months but finally became DA free. Opiates can be a big help while weening but I don’t tolerate them well so that is one reason it took me so long. Then I suffered a horrible depression (DAWS) while my brain tried to adjust to creating its own dopamine. I have recovered now, after 4 years, for the most part. I don’t want to scare you with my experience. Like I said, I was an extreme case. What I will say is it does get better. My opinion is to tapper as slowly as you need to. I understand the suffering you are going through. Bottom line is to find what works best for you without putting yourself over the edge.

[Mongolia2020]

hi Lorri, thinking of you. Just something to help keep you safe - my husband had the bright idea of wearing a bicycle helmet to protect my head when I was staggering around severely sleep deprived and banging into things. He also covered the sharp corners of our dining table to help reduce bruising when I banged into it. I know it’s not what you are hoping to hear but please know you are not alone.

Another thing my family did for me was phone me during those endless sleepless nights and talk to me. It helped to know I was not alone.

My son flew up from another city and stayed also, so he and my husband took turns to be with me as much as they could. However tit was very hard for them to see me in that state. I actually thought I might die, but I didn’t. And now I am better.

I know it is so hard, but You will get through this.

Sending my love and best wishes

[lorri214 in reply to Mongolia2020]

This is a terrible condition. Of all the things wrong with me, this is the worst. How long did it take you to get thru it?

[Oregonmike]

how many baths you asked? I basically lived in our hot tub for 3 days when I was going through morphine withdrawal. I was in it about every 3 hours. During that time I would lay there and think up machines that would massage by legs so I could fall asleep, lol - I wish more doctors would have RLS, lol That’s horrible of me, and of course I’m kidding . It would help in the sympathy department when you’re trying to explain it to them. I’m glad others have found their answers. I hope you find yours. I think it’s strictly a physical thing. Find someone here who is similar to you in age/ ethnicity/ body type/ diet/ activity, and mirror what works for them. Just my 2 cents. I am not a doctor- I’m just an Irish guy that is trying to make sense of it all too.

[NormAnnT2]

In all probability, you’re making a horrible mistake because it is highly likely that your problems are worsening because of the Mirapex . You have to withdraw slowly from the Mirapex to better control your symptoms while starting on a new drug like Horizant… Without question, Horizant is one of the best drugs for this problem to date but again it sounds like your augmenting to the Mirapex and that makes things miserable and if your symptoms got worse while taking the Mirapex then that’s probably what’s happening, but any clinician would know that you have to somewhat control the symptoms by slowly withdrawing from the Mirapex while starting on any new drug like Horizant, which again, is extremely effective, but I won’t feel so if you’re still augmenting to the Mirapex… You’re in a tough spot right now, but you can get through this, but it’s likely not gonna be accomplished by just ditching the Horizant while you are continuing to augment to Mirapex. It will only worsen your problem and it sounds to me like you need a clinician with more experience in managing this problem if you’re talking this way… That person has not made you aware of how often restless leg syndrome is worsened by dopamine agonists which is what Mirapex is. I hope this is helpful information… Don’t get depressed. It is very treatable. … you just need the right advice if in fact you’re being seen by a doctor and if so, it doesn’t sound like you’re being managed correctly.

[BeachGolfer]

Just adding another voice . I’ve gone thru Pramipexole withdrawal as well. Getting off heroin can’t be worse! Hang in there! I highly recommend totes of Marijuana or pure THC . I use a vape pen with THC from hemp plant for breakthrough restlessness. After 2-3 totes I get relief within 5-10 minutes. I’m on Oxycodone but will get restless if I inadvertently consume a trigger food that causes restlessness. I wish you well.

[lorri214 in reply to BeachGolfer]

I have a vape pen. I didnt like it. Kept coughing. Tried gummies probably the wrong ones. Can You can use marijuana when you take oxycodone. My son keeps telling me to try it again. The problem is getting the right gummy. The last gummies i got were not strong enough. They are too expensive for me to keep buying them to see if they work.

[BeachGolfer in reply to lorri214]

I have had no problem with using marijuana and oxycodone together. Gummies take about 1 1/2-2 hours to work so you have to keep that in mind. For me it took a lot of trial and error to get the right strength and timing . I use a THC / Indica ( not Sativa or a Hybrid mix) gummy every night. Smoking marijuana or using a vape pen with either just THC or marijuana provides me quick but short term relief. I wish you well finding what works best for you. 🙏

[Hidden]

Hi I am so sorry you having so much distress. I have struggled with it too may years to count. I have had augmentation with every DA. I am going to new Dr. soon. But its the immediate relief of legs when they crop up and are severe. I will share what I do and it does seem to help in the moment. I have to get up and walk. Then I rub CBD cream or oil (I use anroll on) all over my legs lightly . It can be obtained online. Give a good strong deep massage only rubbing down not up slowly the whole leg. Then I put 2 pound weights around my ankles and sit and raise my leg and lower slowly. Then walk around with them on. I do it for a while as tolerated. Then I do some deep stretches how ever you would like to stretch for me its mostly my thighs. Then repeat as much as tolerated. It works for me but of course everyone is different.

I have also increased my Iron tablets to every day 65mg. I followed the advice here of how to take it. I take it on an empty stomach at night with vitamin C. ( however you may want to discuss the iron with your doctor) Apparently it increases the absorption.

The website I have good experience with for the CBD is musclemx.com. I find the roll on works the best . Its called Muscle MX CBD Balm Advanced heated relief Activate 1000mg . i t is about $60 well worth it.

I hope your symptoms subside soon. Again this is just my suggestion of what helps me.

[Mongolia2020]

I decided to go cold turkey, which may not have been the best thing to do, because I wanted it over and done with and also because I didn't know at the time what else to do. During that time I had 4 or 5 hot baths every night, as hot as I could stand, and then alternated with cold, then hot again. Then walking again.

At some point I found that music helped me to cope, and so I played music and walked, skipped, danced and staggered round and round our pool table for as long as I could stand, then had hot bath. I found menial tasks that I could standing up with some body movement to do at nightime - washing dishes, I recall sorting my husbands screw and nails collection over several nights, wrapping all the Christmas pressents etc. At the worst though, I could do nothing but move around and kick my legs - all night long.

I counted the minutes until daylight, when I always felt better - it was the nights that were so bad. I recall playing table tennis at 3am with my son. I recall walking in our driveway in the middle of the night - I made up a loop and concentrated on counting steps and loops.

After 5 days and nights I started to microsleep, then I would fall asleep for 5 minutes at a time, anytime day or night. I started taking gabapentin and codeine. My sleep gradually increased over the next week or so until I was getting a total of a couple of hours sleep in a 24 hour period, then 3 - 4 hours.

I did not think the gabapentin was working so I dropped that and continued on codeine, but I needed to take too much codeine to contol my symptoms and felt drugged up all the time. I managed to persude my doctor to allow me to try methadone, and since starting on that have gradually increased my sleep hours so now I am sleeping 6-8 hours most nights plus often a daytime sleep. I have now dropped the daytime sleep and at last feel that I can contribute to society again.

It has been 5 1/2 months since I stopped DAs.

[lorri214 in reply to Mongolia2020]

Another night of horror. Only 10pm and i have bbneen walking crying yelling. I still have till morning to go. you cam see i can hardly type. I took one mirapex to see if that would help. still waiting. PPure torture. Why did my dr do this to me. when she said bite the bullet she meant it. I didnt realize it. wait til i see her. sorryt for being so dramatic.

[Elisse3 in reply to lorri214]

Lorri take the advice given you regarding your weaning you weaned to fast. You have been given the best advice for getting off the mirapex.

[LotteM in reply to lorri214]

I am sorry it is still so awful. And I hope that meanwhile the mirapex started to work. It should, at least to make it more bearable.

Did you go back to your original dose? Of before weaning down? Or did you take a lower dose? When it is day again and things have settled a bit and maybe you got a little rest, make a reduction plan! Decide how far back you want to go and what reduction steps you will take. Sue always gives a standard reduction amount and timing, but it may help to slow down if it is too difficult. That means waiting longer for the next step AND reducing by a smaller amount. Get family or good friends to help if you feel too wobbly during the day.

Hang in there. You will get better.

[RiversW]

Hey Lorri, I too have been through the hell you are experiencing. I went cold turkey off Pramapixole 5 years ago without success. So much suffering and so little sleep. All of the horrible things you are describing. In desperation I found yet another Neurologist. He switched me from Primapixole to Neupro. At first Neupro helped. I wasn't sleeping through the night but I wasn't pacing all night either. Then after 6 months I augmented and was feeling worse than ever. I endured the pain and fatigue for more than 4 years. There were many days when I told my wife that I just couldn't live like this anymore. Then 4 months ago, I withdrew from Neupro successfully. This time I got a big assist from Buprenorphine. The withdrawal was still a bit rough but nothing like before. Nothing like what you are going through now. Not even close. I have been clean now for almost 3 months and am sleeping like I haven't slept in 25 years. Ask you Doctor about trying Buprenorphine or Methadone. It could save you from a lot of pain and suffering and best of all free you from the dopamine agonist jail. I hope so.

I should add that I don't think I would have made it without the guidance and comfort from people on this site.

Take care and good luck. You will make it.

[Mongolia2020 in reply to RiversW]

Hi Rivers W, so buprenorphine worked for you ! may I ask , did it work quickly, or did it take a while for build up to the right dose. I note others seem to be saying it worked immediately for them. I’m on methadone but, while I am getting 6-8 hours sleep most nights eventually, i am still quite wakeful at night, going to bed early yet still waking late, to be able to get that much. I am still awake 3-4 hours a night.

Don’t get me wrong, I’m in a much better position than I was 6 months ago, but just wondering if I could get better still?

I’m interested in how it went for you, and others on buprenorphine?

[RiversW in reply to Mongolia2020]

Hey Mongolia,

Yes, Buprenorphine did work immediately and for the most part very effectively. After years of sleeping no more than 3 hours in a row, I now get 6 to 8 hours. However, there have been side effects. After starting Buprenorphine, I suffered from increased anxiety and mild depression. Wellbutrin has helped with both. From time to time, I am also having insomnia. Last night, for instance, I had no RLS, but didn't get to sleep until 5 am. This does not happen every night; perhaps once every 2 weeks at the most.

Buprenorphine successfully eliminated almost all of my RLS symptoms. However, I still experience burning in my feet and legs. This unwelcome symptom showed up about 4 years ago and though Buprenorphine has helped lessen the pain, some burning remains; especially when I wake up in the morning. Not sure if this is the result of my continued withdrawal from Neupro ( I have only been free of this dopamine agonist for about 3 months) or symptomatic of some other ailment.

Sorry my answer is so long and rambling. Frankly, after so many years of not knowing another soul with RLS and now finding a community of thousands who understand what I am talking about, I cannot stop rambling on.

In short, yes I was helped considerably from the get go when I started Buprenorphine. It has been a godsend for me. The first sustained relief I have had since my relationship with RLS became serious.

I hope this helps. Feel free to ask more questions if you dare to risk more long winded answers.

[Mongolia2020 in reply to RiversW]

Thanks RiversW.

I feel that I have similar side effects, actually EXACTLY THE SAME as you, plus severe constipation and daytime sleepiness ( although that is getting better), on methadone. However it is still not controlling my symptoms fully at 8.75 mg. Maybe at 10 mg? Can I ask what does of buprenorphine you are on?

Funny, I feel exactly the same about now having others to communicate with about RLS. I feel like I am a bit obsessed. I look at this site every night and read everything. It is so welcome to know that someone else understands and appreciates what we have been through.

Te your burning feet: I THINK this is a separate issue to RLS and has a different causation. Try googling “ burning feet syndrome” and you may get some answers.

[RiversW in reply to Mongolia2020]

hi mongolia,

I pray that the burning is not a separate ailment from RLS. I don't know if I can deal with yet another painful condition that is impossible to diagnose and treat. Coincidently, yesterday, for the first time in 4 months and for the first time since starting buprenorphine, I woke up from a nap in so much pain. Burning from my knees to my feet and feeling a extreme discomfort throughout my entire body. It was this same extreme pain and discomfort that in February led me back to my neurologist in California who suggested buprenorphine. I cannot describe how depressed I felt sitting on the side of my bed, deflated from what seemed like a relapse.

A couple of days have passed since then and things have improved. As expected I have gotten some good advice here. Take a look at my post from this morning. I am happy to tell you what dose of buprenorphine I was taking but I do plan to experiment with timing and dose. Initially I was taking .5 mg. It seemed to be working well but then I had the set back. Now my plan is to take .5 in the morning, .5 in the evening and .5 before trying to sleep. If needed I will do another .5 in the middle of the night. We will see. Feel free to message me if you want an update. take care and good luck

[RiversW in reply to Mongolia2020]

Magnolia, I should also add that I have had minimal side effects from buprenorphine. No constipation whatsoever, Some insomnia and some depression and anxiety. I take Wellbutrin for the depression. As for the anxiety. Well, I have been anxious my entire life. That is what it is.

[ParisianTN55]

when I went off of mirapex I just stopped taking it and I was miserable too. I’m now going off .Requip. I tapered off slowly this time and it is much better. I was on 10 mg daily and I’m down to 3 mg now. I did 1/2 mg per week lower for several weeks. Maybe you could try that. It’s much easier to take. Good luck!

[welschrispy]

Hello Dear Lorri. I know very well what you are going through. I cold turkeyed on

Pramipexole on 4th Jan 24. I had been taking doses of up to 4mgs. It was hell! I walked the streets all night slept when I passed out. drank medicated Vodka. (not usually advisable but alcohol helped get through the worst) ate bits and pieces when I could hold it down. When I occasionally lay down the spasms were so bad they would throw me off the bed. I used Tramadol and am still taking 200mgs. I plan to swap over to Buprenohine some time soon.

I don't advise cold turkey, that was my desperation and I suffered for it but I was sick of shaving bits of Pramipexole and wanted it over. I knew it could kill me (I'm 75) but I took the chance. My advice is take your time, cut down slowly. Pace yourself. You can do it.

If you can't walk the streets in safety (!) then go out shopping and treat yourself to a Nordic Track cross trainer and use that instead. I do this as well. Listen to pod casts, watch stupid movies., study Greek philosophy.... it doesn't matter what you do as long as it eases your symptoms... and it will. Make a commitment. Make a plan. warn people not to expect much from you for a while. You will get through it

I have had either Nausea, anxiety RLS and depression or all of the above day and night for the last five months. It's been horrible. My wife and I have sometimes been sobbing together in complete despair. But there is no way back and, even if you manged to get back on premipexole you would face the same devastating symptoms in the future. Augmentation would eventually make the drug ineffective and you would then be in a match worse and truly horrific situation. So you might as well get it over with now.

I totally sympathize with you but I also agree with the others on this site: Please don't give up. It is astounding to me how we humans can adapt to pain and physical duress. It's like getting into a cold lake. Horrible at first but not so bad when you get used to it. If I can do it you most certainly can! I'm a total wimp... I'm the sort of guy who can pass out just having a blood test.

So you can do it, you truly can.

One large bear hug heading your way.

PS I forgot to mention that for the last three days I have been symptom free. I now take 200mg Tramadol and 200MG Pregabalin and that's it. Now I just have to swap over to Bubrenophne.

[DesertOasis in reply to welschrispy]

Welsh, why do you have to swap over? You can’t augment on Tramadol if that’s what you’re afraid of?