Please help

[Dollydot86]

I’m currently on 3 pramipexole and 1-2 gabapentin a night I’m in agony and can’t sleep.. I’ve read about augmentation and that’s why I’m now on gabapentin and trying to ween off the pramipexole. Does any one know what I can do to ease the pain because I literally can’t take it anymore. I’m only 33 and can’t live like this forever. 😔😔😔

[Amrob]

Hi Dollydot, I'm really sorry to hear you're struggling. Is the agony from sleep deprivation, a physical sensation of pain or something else? If it's really bad, it may be worth speaking to your health care provider.

I've read of others on this forum who had a really difficult time coming off pramipexole. They may be able to offer some insights. There is hope though as gabapentin can very effective.

[Hidden]

Hi Dollydot. If you could say what doses you're on it would be easier to figure out what's going on. Since pramipexole and gabapentin come in tablets/ capsules of different strengths then the number you take doesn't really say this.

I.e. what strength are the pramipexole tablets 0.125mg, 0.25mg or higher. What strength the gabapentin capsules 100mg or 300mg.

Have you reduced the pramipexole at all? What did you reduce it from and how long is it since you started reducing it?

Are you taking any other medicines?

[silkyreg]

The only tipp that I can give is to try if your RLS is caused by some comestibles. Some experience a worsening of their RLS when drinking coffee. Some experience a betterment when they do intermittent fasting.

[Hidden]

It does sound like you have been suffering augmentation. If you're currently trying to reduce the pramipexole then you may be suffering withdrawal symptoms. This will include a temporary worsening of the symptoms.

Assuming your prami tablets are the smallest dose i.e. 0.125mg (88ug) then withdrawal symptoms may be lessened by reducimg the dose very slowly. For example, I found it helpful to reduce in steps of 44ug, that's half a tablet. I reduced the dose every 4 weeks, but every 2 weeks might be enough. I appreciate that you would like to get rid of the augmemtation and withdrawals as fast as possible, but reducing the dose too fast only increases the withdrawal effects.

As regards the gabapentin. Starting the gabapentin before reducing the prami is a good idea. However, it's better if you take gabapentin 3 - 4 werks before reducing the prami. It can take that time to start fully working.

You also need to be taking an effective dose of gabapentin.

Assuming that the capsules of gabapentin you're taking are 300mg, then 300 - 600 mg is probably not enough. Usually to be effective you may need at least 900mg, i.e. 3 capsules. Also these are not "as needed" like a painkiller you'd take for a headache. It's best to take the same dose every day.

Some people find taking an opiate whilst withdrawing from pramipexole. helpful. This is OK if you can get a prescription. Some people use paracetamol and codeine. This is because you can get this over the counter. Not a good idea in the long term however. If you try this do not exceed the stated dose. The paracetamol can be dangerous.

Sleeplessness is a common withdrawal symptom, so if you can get a short term prescription for a benzodiazepine or a Z drug then this can help.

It may be that there are other factors making your RLS worse. Alcohol and refined sugar should be avoided. Some people find avoiding caffeine helpful, others not. Some people find reducing carbohydrate intake generally helps.

There are also other medicines that should be avoided by someone with RLS. These include antidepressants, some antacids, some antihistamines, anti nausea medicines and beta blockers. If you are taking other medicines then they may not be helping.

In addition to medication for RLS. There is a variety of other things you can do. This includes considering several minerals and vitamins. The main one of these is iron. Brain iron deficiency is a significant factor in RLS. I suggest you find out as much as you can about these and RLS generally, e.g. by using this web site. RLS is a life long condition with no cure, you're suffering especially now because of augmentation and withdrawals. It must be horrifying to think this is how the rest of your life is going to be, but that isn't necessarily so. You may find also that you can psychologically adapt to the condition. This is an aspect of RLS that many sufferers ignore or even deny. Certainly, struggling with the condition does not help.

You do need to be informed as much as you can.

I'm sorry you are feeling desperate at the moment, but withdrawal from pramipexole, or any other dopamine agonist is not at all easy and what you're experiencing is not unusual. It will get better and it's worth persevering with this.

[gaula75]

Your post sounded so familiar to me. That was exactly me a year ago. I finally found a rheumatologist who prescribed 2 Pramipexole 1 mg. and 2 Gabapentin 300 mg one hour before bedtime. She also suggested soaking in an Epsom salts (Dr. Teal's lavender)bath to relax the leg muscles. Sometimes taking too much medication isn't good either. If I take 3 Pramipexole or 3 Gabapetin I lay awake all night and my legs bother me. I have had severe RL for 15 years and this has been the only thing that has worked for me. I hope you will find a solution also. Please don't give up. I know the agony you are experiencing, but there is always hope. Oh, no soda, alcohol, or chocolate several hours before bedtime. Sounds simple, but sometimes simple is best.

[Hidden]

I have been on Gabapentin for about 8 years. 1600Mg per day. It really started to work when I took 2 capsules at 5:00PM and then 2 more at bedtime. It’s not a 100% cure but it sure seems to help.

[Lololollo]

Do have your ferritin levels checked if it is RLS you are struggling. I have had relief from having iron infusions!

[Sweetdancer]

Hi. I know what you’re going through, touch wood I have weened myself off ropinirole and just have a patch. It’s taken time. One night I was ironing another sorting my wardrobe!

I find if I cold shower on my legs and and arms or just dump them ina bowl of cold water. Helps.. I know this sounds funny but I also march on the spot and count up to 400.

These both help but not always. Have had rls fora out 40 yrs so have tried most things! I think we have to learn what helps and realise that it’s not necessarily going to work alway

Must say this forum has helped, just reading other people’s problems at least you know you’re not going mad

[Joolsg]

All I will say is that you CAN do this. Withdrawal nearly killed me but I got through it and life is so much better.

Reduce very, very slowly and if it is intolerable ask your doctor to prescribe a strong opioid painkiller or get hold of some cannabis. It’s illegal in the UK but my adult children sourced it for me and it gave me 30mins of life saving sleep.

The constant 24/7 jerks and spasms will start to ease off 10-14 days after the last dose of pramipexole.

Life off dopamine agonists is so much better- the RLS will become less intense and you will only get it at night, or if you’re lucky, you may not get it at all. Many people get off pramipexole and find Gabapentin or pregabalin completely control their RLS.

I wish you strength.

[FLAME43]

aw my precious I know what you suffer, I kept to 3 p/pexola with 2x dihydrocodeine 3 times a day with 1 x pexola in between paracetamol, and under the tongue some cbd oil 3 times a day, it helps a lot sometime I have to walk around a bit with the medicine at night, but I get to have a good sleep, I take whatever helps and I am doing quite fine. hope you find your right mix, opiods (dihydrocodeine) wors well for me

[FLAME43 in reply to FLAME43]

SORRY NOT VERY CLEAR HOW I TAKE THE MEDS, IT IS 2 X DIHYDROCODEINE AND 1 X PREM/PEXOLA 3 TIMES A DAY (MORNING NOON AND NIGHT). THE DY/HY IS THE MOST IMPORTANT ONE FOR ME. OF COURSE WE ARE ALL DIFFERENT

[LotteM in reply to FLAME43]

Flame, it may be wise to slowly reduce the pramipexole. If you have symptoms during the day and that is why you have to take your meds during the day, it may well mean you are suffering from the pramipexole. Once your are off the pramipexole (reduce very slowly in very small steps), you may find after several weeks that your symptoms are far less severe and thus you need far less codeine to quell them, and only at night. This result is not a give, bit from the many stories and experiences on this forum, it is quite likely. Do discuss this approach with your doctor.

[Leemiki2]

Yes. The answer is kratom. Its a powder from a tree. It helped two of my sons get off roxycodone. One night i suffered for 5 hours with RLS. My son begged me to try kratom. All of my symptoms were gone in 30 min. I have severe RLS it even gets in my arms. It really is worth a try. 2 to 4tsp in a water bottle full of orange juice.