I has been four weeks since my specialist has placed me on gabapentin, carbamazapine and clorazapam in preparation for me to come off pramipexole after 22 years. Last Monday was the first drop in pramipexole, -0.0088mg from my morning 'dose'. I was wondering if after 22 years some of my fear around this is part of mental dependence on this drug to alleviate my RLS symptoms as it once did.
But I wasn't prepared for the physical and mental effect such a small reduction had. It felt literally as If I had jumped off a cliff. My muscles shook and had no strength and my mood plummetted. I am not one to cry but I felt this incredible overwhelming sense of sadness for days. If I hadn't had some support around I don't think I'd be here. This is a week later though and gradually I have begun to feel a bit better ... although the RLS Is awful. But I am really dreading the next drop in a pramipexole in a week's time. It astounds me that such a little drop in dose can make such a huge impact.
Has any one else felt this huge mental impact???
Hx
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HilsK
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Have been on 3 x 0.088mg Pramipexole for a while and started augmenting. RLS kicked in earlier in the day and I also got it in my arms,
Weaning myself off. Started 3 months ago, reduced by 1/2 tablet for one month, then another half for another month and cut down by a further 1/2 table three weeks ago. Now I am on 1 1/2 x 0.088mg. Doctor has prescribed Gabapentin. To start with dosage was much too low and I went through hell - could not sleep or sit. Has now increase dose to 600mg and thank God, that medication has just kicked in now. I have more or less good nights, having said that, not very good last night. But compared with previously, definitely much better. I know I have to go through a further three months and probably will suffer from weaning off but in the end it will be worth it,
Check what dosage you are on for Gabapentin. Having spoken to other people on this forum, it seems that 600-900mg is about the going rate.
Caramazapine is tegretol often used as an anti convulsive bit was one of the first drugs used back in the early 80's which was shown to have a significant effect on the symptoms of RLS ncbi.nlm.nih.gov/pmc/articl...
Clorazapam drugs.com/comments/clonazep... It is a benzodiazapine but has some activity in reduction of RLS I.m only on 1mg of this ,
What you are describing is typical for reducing the dose of a dopamine agonist (Ropinirole or Pramipexole). I came off Pramipexole a week ago and had two nights of literally no sleep at all. I was also on 100mg Pregabalin (similar to Gabapentin). I knew to increase my Pregabalin gradually to 300mg (max dosage, spread throughout the day) and my doctor has put me on Codeine for a few weeks. So typically now I sleep for 1-1.5 hrs then my body jerks and I have to get up for 30-60 mins. Last night was typical but I did sleep from 06:30 - 09:30 - wonderful.
As for your reduction, from what dose are you reducing from? It took me a year to reduce from 3.5mg Ropinirole and it was not easy going at all. Each reduction will trigger the symptoms that you experienced. Please note that just 1-2 weeks between each reduction is too short, folk seem to indicate that at least a month between steps is better.
The other thing to note is that Pregabalin only really takes effect when dopamine agonists are out of your system. So it may be the same for Gabapentin, but I cannot say for sure).
All the best though, it is better to get rid of dopamine agonists from ones medication.
I was on the lowest dose of Pramipexole and came off it a few years ago, but went straight on to tramadol. Due to the tramadol I experienced no withdrawal. It worked for years before it started to lose its efficacy.
I still take tramadol, but it is not working as well as it used to. Some nights I get 5/6 hours sleep, sometimes only about 3. My gp offered to send me to a neurologist, but I keep putting it off because It seems the next tablet people get offered is gabapentin, and that worries me. I also take gentle iron supplements, and magnesium bisglycinate.
I am so sorry that you are going through this. You deserve so much better and have been let down disgracefully by the pharmaceutical industry and medical profession. You are clearly an incredible person (I read your post in which you describe the action you took to educate your medical advisors) - brave, decisive, generous and kind.
Pramipexole is an extremely insidious drug which the body comes to rely on wholeheartedly so that a reduction in dose is objected to at every possible level - mental and physical. Dopamine agonists are not typically referred to as addictive drugs but I consider that what we are dealing with is an addiction more powerful than heroin. I suspect the term 'augmentation' was dreamed up so that manufacturers could avoid being confronted with the sorts of issues they have to deal with in relation to opioids. In my view, it is important to view any withdrawal from a dopamine agonist through this prism. Having now experienced withdrawal from pramipexole and oxycontin (courtesy of my rls), I would say that coming off pramipexole was much harder and that's not to say that oxycontin is an easy drug to withdraw from - far from it.
I think it's very important to keep this in mind when going through the withdrawal process so that you reward yourself for each small step and don't expect too much from yourself. It is also very important to keep your eye on the ultimate prize. It is so worth eliminating this drug. Your life without this drug will improve immeasurably. I was really struck when I finally got off it by how much more 'myself' I felt. I hadn't realised how much the drug had affected my personality. I also felt much more in control of my rls even though there were some difficulties with finding a treatment.
Is it 0.0088 you reduced by? I'm going to assume it's actually 0.088mg (ie one whole tablet); I don't know how anyone could divide those tiny little packets of poison into 10 pieces. I looked at your previous posts and it seems that 0.088mg is one sixth of your overall dose. I would say that that is altogether too big a jump, particularly given the length of time you have been on the drug. In your shoes I would divide the drugs into half or even quarters (if you can) and reduce by the smallest possible dose. Further, I would not reduce more frequently than once every 14 days, 10 days at the absolute shortest. Using this method you may be able to trick your body into not noticing what is going on. There is an interesting thread on another forum (bb.rls.org/viewtopic.php?f=... by a member who had been on ropinerole for many years and managed her withdrawal (which she deferred for years out of fear of the withdrawals) in this manner. Unbelievably, she experienced very few of those tortuous nights such as you describe. It is frustrating to go so slowly as it means waiting a long time to get rid of the drug and of course, we are all different, seemingly never more so than when it comes to our dopamine production, so I assume there will be people for whom this approach does not work, but it may be worth your trying it especially given the severity of your response to the existing reduction.
There may come a time - when you get to a much lower dose - when even going at an extremely low rate will mean that you get greatly increased symptoms but it is unusual for it to happen this early in the process.
At that stage you might try to pressurise your GP to give you a temporary prescription for tramadol or oxycodone. You don't have to use these drugs every night but once every two or three days to enable you to get some sleep is a good idea because - in the ultimate of cruel ironies - lack of sleep itself appears to aggravate restless legs. Unfortunately, the alpha2delta ligands such as gabapentin are not usually sufficient to override the greatly exaggerated symptoms of late stage dopamine agonist withdrawals and while the carbamazapine and clorazapam may help, typically an opioid is required.
Incidentally, it is a good sign that your doctors are prepared to consider carbamazapine and clorazapam, they are often overlooked in the treatment of rls and I have read a number of posts from people who have found them helpful.
Apologies for the length of this post - I wrote an essay!
I am on premipoxole last 08 years I am coming off slowly my dose was 2 tablets 0.88 mgat night so Ian taking half tablets less every 3-4 days because I am taking nupro patch’s I will let’s you know about the results
I developed such bad anxiety while on Gabapentin that I had to go off it after a few months, though it did help my legs. When I went off it, I had a major mental experience ending up on anxiety meds and anti-depressants for over a year. I’m now on Ropinirole, magnesium, iron, and folic acid. I also use magnesium cream. My legs will still bother me, but I seem to managing right now. I hope you do better on the medication than I did.
It does sound as if you are reducing the pramipexole too fast.
Better to reduce it in steps no greater than half a 0.088mg tablet. If withdrawal effects from that are too great then try a quarter of a 0.088mg tablet. I also suggest cutting the dose only every 3 - 4 weeks, certainly no less than 2.
Withdrawal effects usually consist of a temporary worsening of symptoms and sleep lessness.
If you're alslo experiencing mood disturbance it may be that you are also suffering DAWS, (dopamine agonist withdrawal syndrome). I suggest you look this up.
The cloNazepam should help a little with the sleeplessness.
Gabapentin can help a little with withdrawals, but not greatly. It also needs about 4 weeks to start working and you also need a sufficient dose e.g. about 900mg.
You should also be tested for iron deficiency i.e. blood tests for serum iron, transferrin, ferritin and haemoglobin. If your ferritin is below 75ug/L, it would be a good idea to start taking an oral iron supplement.
Withdrawal effects can be helped if your doctor will prescribe an opioid e.g. codeine or tramadol.
I was on it for 20+ years, I cold turkeyed it at my neurologists recommendation, I had no problems doing that. It’s been several years and I feel fine.
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