Seem to be stuck

[BenAZ]

Having a hard time taking the next step down in my pramipexole. Every time I try going down symptoms get worse. It's more the anxiety of what I have to go through to get off this medicine. I know it will be worth it in the end. Have stopped caffeine, stopped taking antidepressants, take iron supplements, also on gabapentin. Trying to set myself up for success, but not getting much help from doctor(neurologist). It truly is a torturous process I'm sure most people on here know about. I don't really have a question just want to hear about how you made it through augmentation and getting off DA. Mentally it is taking a toll on me. I know it's a process.

[67Waterman]

Hi Ben - I am so sorry ... it is awful isn't it. May I ask how long you have been taking the Gabapentin for, how much you take and when? With thanks, Sally

[BenAZ in reply to 67Waterman]

I take 300mg 3 times a day. I take it morning,noon and in the evening.

[67Waterman in reply to BenAZ]

It's interesting to read that higher doses are prescribed. I am taking 900mg at 7.00pm and 600mg at 9.00pm (in bed by 10.00pm) but still RLS is present for a good couple of hours. However, I have only just started on Gabapentin (after coming off of Ropinirole), so need to give it a good three or four weeks to see if it works. Unfortunately, I am sceptical at the moment ....

[SueJohnson in reply to 67Waterman]

I believe I replied to you before on this. If you must take 900 mg and I recommended you take 600 mg and at 7:00 and 9:00 and 300 mg at 5:00, you should take the 900 mg at 9:00 and then the 600 mg at 7:00.

[SueJohnson in reply to BenAZ]

Why 3 times a day? Are you having RLS during the day?

[BenAZ in reply to SueJohnson]

Yes I do get symptoms during the day.

[Merny5]

Hello BenAZ,I’m so sorry to hear about the anxiety that you are experiencing. You WILL get better! It took me almost 2 years to feel like myself again. I was on an enormous dose of DAs so I’m sure your withdrawal symptoms won’t last that long. Prior to this, I never experienced anxiety. There were many months that I thought that I would never be myself again, that I had permanent damage. Doctors told me that there was nothing that could be done to make this process easier. Just like what you are experiencing, every time I would reduce my dosage, depression and anxiety increased. I would often increase my dosage because my body just wasn’t ready. Eventually, I was able to get off of that horrible medication. Just slow down, if needed. You will make it through this extremely difficult time. Good luck BenAZ. Keep us updated with your progress.

[BenAZ]

Thank you so much. I know there will be an end to this. Just have to do it. Get in the right mind set. I have been on these DA for so long as well have managed to go from 3 mg of pramipexole to almost .75 mg. Your words certainly give me hope. Thank you again and I'm glad you are doing better as well.

[Bks429]

Hi Ben: Yes, it's a horrible path, but worth it. I am not totally off the pramipexole. When my new neurologist recommended I stop it, I was terrified. I KNOW the terror and anticipation of what the night will be like. I was a mess. I do have a medical marijuana card, but in the beginning even that didn't help. At its worst (prior to and at the start of tapering) I was taking the THC, drinking, anything to make the feelings go away. Sometimes, in the middle of the night I would get on my rower and row like crazy. Horrible disease. Anyway, I picked off a tiny piece of the .25mg tablet every two weeks. One might say, I prolonged the agony, but eventually the augmentation lessoned. I was down to half of a quarter of a tablet and I was still snipping off bits of the tablet taking it every other day. I finally stopped entirely. Sometimes, I feel an ever so slight rumbling in my leg(s) and I'll take a THC tablet and go back to sleep. Sometimes, I don't even need anything. One other comment: when my neuro told me to taper, he said when I took my last tablet, I could have up to 10 days of misery. I think my tedious snipping away on the tablet helped. The agony was not 10 days and it was not horrible. Good luck. DO IT!!!! (I DO take 900 mg gabapentin and clonazapam)

[Dougg]

BenAZ - if you are in a position to do so, you may wish to consider trying kratom. I was able to get off my last dose of pramipexole using kratom, and the transition was much easier than I would have expected.

[Sam4421]

I went cold turkey after 5 years of 1mg pramipexole. It was hell for three nights... and then it was over. I began to take iron tablets and after two weeks RLS disappeared!

Warning! I would not advise going cold turkey unless there was someone with you and you had the ok of your doctor. Bizzare things were happening during those three nights of hell!

[oddruud]

I bought this device half a year ago (medzys.com/products/medzock). I took three tablets a day. Now I have reduced to one tablet before bedtime.

[halperinchen in reply to oddruud]

Hi, Oddruud, are you using the medzock to control your RLS symptoms, I'd like know how effective it can control the symptoms, you mean you can reduce the medication while using the wearable ? Thanks for your reply.

[oddruud in reply to halperinchen]

Sorry for the late reply. Yes, I use medzock to control the RLS symptoms. You can read more how it works here; medzys.com/products/medzock

So whenever my legs tickle or have the urge to move I put them on. I choose one of the four programs. The ultrasonic circulations from the pads stimulate the nerves and muscles. After 30-45 minutes the legs are calm again and it stays that for several hours. If the urge to move returns I just put them on again. You can have them on while walking, sitting in the car, and so on so you do not have to sit still.

I used to take one Sifrol in the afternoon. That one I do not take anymore. The same in the evening. I put the device on again 45 minutes before bedtime. I used to take two Sifrol in the evening before bedtime. Now I only take one.

Medzock makes the legs calmer than the medication. At least for me. So they have given me a new life in a way.

Hopefully, this was an answer to your question. Do not hesitate to ask if you have more questions.

[halperinchen in reply to oddruud]

Hi oddruud, I am also the owner of medzock, which I purchased three months ago. Unfortunately, the ultrasonic stimulation most of the time aggravates my rls symptoms. Whenever I put them on, the stimulation will activate the symptoms even when my legs are calm. Hearing your successful stories on the wearable, I might give it another try. I wonder if your RLS less serious than my. Thanks for your reply.

[oddruud in reply to halperinchen]

Thanks for the update. It might be as you say. That our RLS are different.

[Jules1953]

Yes it is a very difficult time weaning off Pramipexole. I was on 3.00mg dosage of Pramipexole when I commenced slowly reducing the amount. I did this over a two year period. The last few months were the worst and fortunately I was able to convince my GP to prescribe Endone 5mg (oxycodone) to help me during this period.I had been using the Pramipexole (Sifrol) for approx 10years, so my brain and body was in a very bad way. Even after very slowly weaning off the Pramipexole, it has taken 6 to eight months for my brain to adjust and heal from this medication.

I now use Temgesic sublingual 200mcg tablets to successfully control my RLS. I have been using 2 Temgesic tablets for the last year or so. But I am trying to see if I can manage with just one Temgesic each night.

A few weeks ago I had an iron Infusion, so it will be interesting to see if I notice any changes in my RLS.

In the new year I will ask my GP to run another lot of blood tests to see if my ferritin level has improved from 50.

I still suffer from depression and anxiety and feel it could be partly due to being on Pramipexole for 10years.

Please see your Doctor or Sleep specialist and ask for perhaps an opioid medication to help you with the augmentation and the horrendous withdrawal symptoms.

And go very slowly with weaning off the Pramipexole. I wish you all the best. Kind regards Julie McGowan from Western Australia