Reducing pregabalin

[Memmy]

I'm down to 250 mgs pregabalin and there has been no difference to when I was taking 400 mgs. I try to have no sugar which I think helps. This evening I didn't take tramadol or codeine and although I've had mild rls I've copied with it. After going to bed I watched some TV. I had a coffee when my legs started. I then slept for a few hours. It's now 3.20 and after waking up with funny legs I made a cup of tea and ate a sugar free biscuit. My legs are now still so I'll try and sleep again. I'm so glad I have reduced the preg as it was making me feel so bad. Everyone is different and gaba and preg don't seem but work for me. Tomorrow it's going to be 150 mgs pregabalin. For me now tramadol is the only thing that works but I'm not going to take it every day as I don't want to get addicted. When I'm off preg completely I shall alternate tram, Kratom, codeine when necessary.

[Joolsg]

Memmy, most of us with severe RLS have to take meds for life. There's a difference between addiction, tolerance and dependence. You should take tramadol so that you are free of RLS and sleep.We are all dependent on our meds. Addiction to low dose opioids for RLS occurs where there is a history of abuse.

If tramadol helps, you should take it every night. If tolerance occurs, you could switch to another low dose opioid.

Have a look at the Massachussetts General hospital opioid study. Most participants have been on the same low dose opioid for years. They're not addicted. They are dependent, in the same way that people taking Ropinirole or Pramipexole are dependent. Getting off low dose opioids is easier than getting off dopamine agonists for most people.

[Memmy in reply to Joolsg]

Thank you. Hope you are still doing well

[Joolsg in reply to Memmy]

I am Memmy. Hopefully I'll get quite a few years on this med. It's just bliss to sleep without being woken by RLS and I really want others to have that too.I really hope you keep taking the tramadol if it works for you. Wishing you many peaceful nights

[Memmy in reply to Joolsg]

So happy for you. Maybe one day all doctors will know about how much people suffer with their legs and know what to prescribe

[LotteM]

Very good reply from Jools, Memmy. I second her remarks. To get good sleep is paramount. The only thing that you meed to watch out for is when the current dose no longer suffices. Like Jools said, you may then want to chance to another medicine / low dose opiod that works for you.

Good work Memmy.

[Memmy in reply to LotteM]

I know but I'm so worried that they won't prescribe any other opioid. I actually only get tram

[Memmy in reply to Memmy]

I actually only get tram for my rotator cuff shoulder problem but if I told them I wanted it for rls I don't know what they'd say.

[BAK524]

You are likely to find your RLS more active as you reduce the pregabalin. I am slowly tapering off pregabalin, and am experiencing an increase in symptoms in addition to insomnia and anxiety.

[Memmy in reply to BAK524]

Yes you're right. I had a bad night last night. May I ask your reason for reducing pregabalin. I don't think it worked for me and I tried it for quite a while.

[BAK524 in reply to Memmy]

Pregabalin may be the worst drug I have ever been on in my life. I was on gabapentin, 1,200mg, which stopped working. Last November I started on 150mg pregabalin, probably too high a starting dose. I needed to nap twice a day initially, the drowsiness was overwhelming. The side effects were significant. Walked like a zombie, couldn't coordinate my fine motor skills like typing on the keyboard, trouble initiating sentences, tinnitus, horrible brain fog. The worst though were sudden bouts of anxiety, panic and derealization/depersonalization -feeling like I was losing connection with reality. After two months of this I tapered (too quickly) over 10 days from 150 to 75mg. Experienced bad insomnia, panic, anxiety, headaches. It's been 6 months now and I'm down to 43.75 (approximately) mg. Still having a lot of trouble sleeping, and when I lower the dose, I notice a big jump in RLS symptoms. (Some describe withdrawal from pregabalin as a "glutamate storm"). This drug is not a joke. Most can tolerate it, but many can't. The internet is full of disaster stories from people who have had a horrible time on it. I would like to see more awareness brought to this forum about the risks of using pregabalin.

[Memmy in reply to BAK524]

I agree completely. I'm still on 200 mgs and I will reduce very slowly. I couldn't wake up in the mornings and it was as if I was drunk all the time. I was on 400 mgs and my neurologist said I could take 600. How do you control your RL's now.

[BAK524 in reply to Memmy]

I'm taking 1mg ropinerole one hour before bed. I also take dipyridomole (200mg) when I wake up in the middle of the night, as the ropinerole seems to not last very long. The dipyridomole is marginally effective. I have symptoms during the day as well, and have been trying a Chinese herbal formula from Eagle Herbs. It helps a little. I've also been using a CBD/CBN/CBG oil at night, and recently have been trying a CBD oil with THC, which also seems to help with the restless feeling. I had an appointment with Dr. Buchfuhrer and he prescribed me methadone. I tried a tiny dose and while it stopped the RLS, it kept me up all night. I have another appointment with him in a few weeks to discuss the next move. I let him know that the pregabalin seemed to be causing more problems. He described it as a "funny drug" and that it affects people in different ways. I can't possibly imagine being on a high dose the way many people are. I've read that stopping suddenly can cause seizures. (and yes, bad RLS) I'm likely to give the methadone another try, but feel that I need to get completely off the pregabalin first.

[Memmy in reply to BAK524]

Yes I think you should be off any other med before starting methadone. You are lucky to be able to see Dr Buchfuhrer. I'm still on 200mgs pregabalin and the combination of preg and tramadol seem to be ok although I would like to come off the pregabalin completely. My daughter and husband are moving to San Francisco and maybe when I visit them I may be able to have an appointment with Dr Buchfuhrer. I don't know if it's possible as I'm British and I don't know if he can prescribe methadone for me in Europe. Anyway it's in the future as I don't think we'll visit before next Christmas.

[SueJohnson in reply to BAK524]

Did you have side effects on the gabapentin?

[SueJohnson in reply to BAK524]

You may be reducing too quickly as insomnia and anxiety are both withdrawal symptoms from pregabalin if done too quickly. If you slow down you should have no withdrawal symptoms.

[BAK524 in reply to SueJohnson]

I would like to believe that is the case. However, I am reducing by about 6.25 mg and holding for at least two weeks and still having bad withdrawals.

[SueJohnson in reply to BAK524]

Try reducing even less and staying at the reduced dose for longer.

[Farmboy1]

Where do you get script for trams doll and cosine

[GuillaumeL]

I experienced something similar, I saw no difference in efficacy of Pregabalin at 400mg (the max dose I was on) and 200 mg (my current dose). The only difference were the massive brain fog side effect and low blood pressure at a high dose. Not worth the side effects.

If you're reducing your Pregabalin, you should get 25mg capsules. Don't put yourself through a bad time when you could tapper slowly! You can reduce 25mg every three days instead of getting these withdrawal effects. Personally, my pharmacist agree to giving me these smaller capsules without the need for a paper from my GP.

[Memmy in reply to GuillaumeL]

Thats a good idea thanks