Feeling defeated!

[Aujamw]

I am coming off pramipexole and easing into Gabepentin which I haven't gotten a handle on yet. I am so tired of all the symptoms at all times of the day. I am so irritable I find myself screaming under my breath in the evening when I just can't sit and watch tv and crying when my symptoms start early in the day wildly weirder every day. Today I sit her with obnoxious tingling and hypersensitivity all over my body. . I try not to show this all to my friends and family as they probably think I am neurotic or they are tired of hearing it... but I am about at my wits end. When I do try to talk about it I think they think I am making it up! No joke! Just simply tired of it all. Night and day. Just want to know--How long it takes for that symptoms of withdrawal to stop after coming off pramipexole. If I knew it would do this to me I would have never, never started. I go to the neurologist tomorrow and often leave just as frustrated as before I go. Just wishing for some information that could move me positively in the right direction instead of symptoms becoming even more wild and unnerving at all times of the day!

[SueJohnson]

You may need to increase the gabapentin, slow down even more reducing the pramipexole and increase the hydrocodone. The usual effective dose is 20 to 45 mg. and it only has a half life of 3.8 hours so you may need to take it more often or switch to another one. Ask your doctor about this.

[Hidden]

Hi, Augamw, I empathize with you.

If you search, you will find some lengthy comments that I made within this past month in which I noted the Hell that I went through earlier this year while more-or-less going "cold turkey" off pramipexole after 20+ years of regular daily use. I was not alone. Turns out, for some time, Dopamine Agonist Withdrawal Syndrome (DAWS) has been recognized. As I elsewhere posted, too bad my supposed "sleep expert" neurologist never heard of DAWS.

How long will it last? Idiosyncratic as are many aspects of RLS itself. In my case, it was months till DAWS fully resolved. Till then, my sleep-wake cycle was disrupted (up till 6:00 AM), I curled up nightly (sometimes daily) in a fetal position on my loveseat writhing in agony, and considered myself lucky on those 24 hour cycles within which I was able to get a "solid" 60 minutes or so of uninterrupted sleep. Others appear to have faired far better.

Please note: I also posted my opinion regarding the impact of DAWS on other RLS medications concurrently prescribed. In my case, during the continuance of DAWS other RLS medications (tramadol, Vicodin, pregabalin) were rendered ineffective. In fact, some "sleep expert" neurologists have gone so far as to suggest that, once a person has "augmented" on pramipexole, some traditional RLS medications (including, e.g., pregabalin) may not work.

How did I get through the Hell? Not really sure. But RLS-UK certainly helped.

Be well.

[Joolsg]

I sympathise. Withdrawal symptoms are hell on earth. Tell your family that the top experts make it clear that it's extremely difficult. If you look at JohnsHopkins hospital Withdrawal schedule it makes it clear that the first 4 days after dropping last dose, you'll get no sleep. The next 10 days will be marginally better.There's a reason RLS has the highest suicide rate of all other neurological diseases.

Most experts recommend taking 2 week's holiday to cope with the horror.

Many end up in A&E - but don't be tempted to do that as RLS isn't taught in the UK so doctors haven't got a clue how dreadful it is.

You really need a low dose opioid like codeine, oxycodone or tramadol to get you through this stage. Or cannabis.

The good news is that once you're through the 2 week's withdrawal, the RLS becomes tolerable.

Make sure you go slowly, half a 0.088 pill every 2 weeks.

Make sure you get full panel fasting bloods and ensure serum ferritin is above 100, preferably 200 as it can make withdrawal slightly less horrendous.

Start gabapentin 4 weeks before last dose of Pramipexole and take in 600mg split doses in the evening 2 hours apart.

Read and research as much as you can as the more you know, the better you'll be treated. Start with the Mayo algorithm and the articles on augmentation.

And bear in mind your neurologist will probably know very little as RLS isn't taught in the UK. Ask if he's familiar with the Mayo algorithm and the rate of augmentation on Pramipexole. Ask if he'll prescribe opioids to get you through withdrawal and if he'll consider IV iron infusions if your ferritin is below 100.

Do NOT let him put you on Ropinirole or the Neupro patch as they're also dopamine agonists and will quickly cause similar severe all over RLS.

There are only a handful of knowledgeable neurologists in the UK.

And I'm sorry your friends & family are unsympathetic. I have advanced, severe MS as well as RLS and MS is NOTHING compared to RLS.

[LotteM]

Why on earth are you trying to hide your RLS for your family and friends? Don't fill in what the might think, just tell them. And don't downplay; tell them what your worst and most frequent symptoms feel like. I suspect they will be shocked, feel powerless but still will offer their help and support. Although there is little they can do, there are things. Like offering distraction. And options to move and 'behave weirdly' due to your symptoms. RLS ÍS serious and withdrawal from pramipexole that you are currently experiencing is often hell on earth, by many labelled as worse that heroin withdrawal.

[dklohrey]

I was on requip for about 20 years before augmentation forced me to turn to some other solution. I tried pregabalin and found it effective against the rls symptoms but it gave me constipation. I then was prescribed gabapentin at 1200mg and it relieved most of my symptoms. I now find myself getting up 2-3 times during the night, with my sheets all on the floor. So, now I feel few symptoms but know that my legs have been kicking (my only symptom), sometimes violently. My wife now has to sleep in another bed. My doctor has now prescribed trazodone to my list of possible solutions, starting at 50 mg. I do fall asleep quicker since I have taken this drug and I do sleep more soundly, though again the sheets are still on the floor and I still get up 2-3 times a night.. Trazodone does calm the mind. Sometimes, I have found, that when you have rls, just going to bed can be stressful as you wait for the inevitable restless night to start. So, to sum things up. The gabapentin relieves daytime symptoms and all symptoms at night except the kicking of my legs as I sleep. I probably get 5-6 hours of sleep on a good night. I am now also taking trazodone with the hopes that it will relieve some of the stress, associated with not getting enough sleep.

[Jumpey]

I have no advice re. augmentation but I want to say I empathise with your trauma and am sending wishes for hope. Others have survived and you will too. Please rethink sharing with your loved ones. You need all the help you can get. RLS affects mental health too.You deserve support. Hang on in there. Things will get better.x

[Hazuki]

Hi Aujamw, I'm about 6 weeks into my withdrawal from DAs and I can say with all honesty that I would not be strong enough to get through it without cannabis and kratom.

Kratom was able to calm my RLS symptoms even when they were at their worst.

Cannabis (I get it on prescription through Leva clinic in the UK). It helps a bit with symptoms but also helps get through the night.

Kratom has a lot of downsides but for me it's a necessary evil, I just accept that I need to take it until I'm past the DAWS.

Stay strong!

edit: I don't recommend Kratom lightly, I think it is best reserved for when things are getting too bad to handle as you'll get a relapse of RLS symptoms when you stop taking it, but that is easier to deal with than the RLS you get from DAWS which is UTTER HELL ON EARTH.

[DicCarlson]

Whew - lots of great advice! I have nothing to add except the analogy that RLS is like a prison and of course the best Prisoner escape movie is Shawshank Redemption - from Andy Defrense “Hope is a good thing, maybe the best of things, and no good thing ever dies.”

Stay strong - better days are ahead!

[SueJohnson]

To elaborate on Joolsg's suggestion you get a full panel iron test. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you have your full iron panel stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not , post them here and we can give you advice. When you get your results, if your ferritin is not over 100, post them here and we can give you advice.

[Birdland]

The horrible RLS symptoms of DA withdrawal doesn’t last forever. I also went through hell to get off of Ropinirole, which I was on for 16 years at a very high dose. Most difficult thing I’ve ever put myself through. You will get through it. The worst time for me was the 4 weeks after my last dose but then symptoms starting to happen much less. I’ve been off of Ropinirole for a year and a half. I didn’t replace it with Gabapentin so you my have an easier time than I did, once you get the dose figured out etc. I sincerely hope you don’t experience DAWS. I continue to have a difficult time with that. Like you said, if only we would have known the horrors of DAs we would have NEVER started them! Best of luck to you!

[TeddiJ]

I wrote to you about kratom on your last post. You don’t have to suffer this much.

[maggiesgrandmom]

I can only say that I am totally with you....