Any suggestions?

[GaryHB]

Hi all. Thanks in advance for reading this. I am hoping someone may have experience similar to mine and could give me their opinion. For the last year my main med for rls has been Tramadol which I take 3 times per day. I have had zero rls the entire time I have been on it which has been amazing. I also take 75mg Trazodone for sleep. My Doc had added Pregabalin which I took 75mg 3 times daily. The last 5 months I have been slowly coming off this as there seemed no point being on it since Tramadol was controlling the rls. I took my last Pregabalin tablet 2.5 weeks ago and I am now completely off it. My problem is ongoing nausea and exhaustion. I have had this for a week each time I reduced the Pregabalin, but it cleared after 7 days. This time it hasn't. Could this be ongoing withdrawals from Pregabalin or could it be the Tramadol? Any suggestions? Many thanks for reading this.

[amrob123]

It sounds like you're in the worst stage of withdrawal seeing as you only came off it 2.5 weeks ago. Previously your body was getting some pregabalin even when tapering down now it's getting none. I'd expect it to last a little longer, maybe a few weeks. But it should improve gradually. This seems the most likely explanation for your symptoms.

[GaryHB in reply to amrob123]

Hey, thank you. I am encouraged. Not knowing makes you begin to imagine its something else going on. I am grateful or your reply. All the best.

[SueJohnson]

If you reduced from 75 mg to nothing you came off too much at one time. I would go back to whatever amount you last took as there is no reason to have any withdrawal effects if you do so slowly enough. My usual advice is 25 mg every 2 weeks but you can reduce by less than that - a half tablet or you can get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks. There is no reason to suffer for a few more weeks.

[GaryHB in reply to SueJohnson]

Hi Sue and thanks for replying. I was reducing the last 100mg by 25mg per time and only every 4 weeks. Even then I was experiencing withdrawals.

[SueJohnson in reply to GaryHB]

Then I would definitely go back on 25 mg and try one-half a tablet after your symptoms stop or a jewelry scale if that doesn't work. If you do it slowly enough you should have no withdrawal symptoms.

[GaryHB in reply to SueJohnson]

Hi Sue, I recall you saying that in a few other posts I had read. Thanks for reaching out. I'll give it a few more days and if It doesn't improve I will do as you say.

[LotteM in reply to GaryHB]

I second Sue.

If you find the nausea and exhaustion do not settle, even when reducing more slowly, maybe consider remaining on 25mg pregabalin. That is a huge reduction from what you took before. Although I can understand wanting to come off pregabalin completely.

[GaryHB in reply to LotteM]

Thanks Lotte. I appreciate your reply. Tbh I am so shocked at how these meds mess with your brain! The withdrawals are hideous and the doctors never mention these realities when they prescribe them. Having come off the Pregabalin, it makes me more determined to take as little as possible of any meds I have to take. Jools had also mentioned remaining on a small dose of Pregabalin, so it is an option. My plan is to stabilize for a good while before undertaking any more changes.

[amrob123]

The Facebook group that I referred you to discourages reinstating a dose unless absolutely necessary. Reinstating can produce a kindling effect whereby any subsequent withdrawal will be more difficult than what you're currently going through. Given that you have already been through so much, there may be merit in holding out longer if you can bear it.

[GaryHB in reply to amrob123]

Thanks Amrob, that's my plan - I am going to hold out for a few more days and see how I get on. Today feels somewhat better so maybe there is a light at the end of the tunnel. Shocking how these meds mess with you - and the Doctors never tell you the consequences of taking this stuff. Hence why this form is so helpful.

[amrob123 in reply to GaryHB]

Agreed GaryHB. I have learnt so much from the various forums that most doctors wouldn't have the first clue about. I have noticed that my GP is now advising people to withdraw extremely slowly from pregabalin (independent of anything I've ever said) so it sounds like the message is finally getting through somehow!

[GaryHB in reply to amrob123]

Thank God for that. Something needs to happen. My Doctors, while very helpful have all made significant errors in my treatment in that they were unaware of the consequences of the meds they prescribed. After 20 years on Pramipexole I look back with horror on my impulse control issues, which my Doc said was PTSD. Then he said stop overnight and I plunged into hideous DAWS. When I learned about I told him and he had never heard of it.

[amrob123]

What was your final dose of pregabalin?Also, in a post from 7 months ago, you also report nausea and fatigue. So it seems like this was occurring before you started reducing pregabalin?

[GaryHB in reply to amrob123]

My final dose that I stopped was 25mg. I had been on that for 4 weeks and then stopped. Yes I checked back on my health journal that I keep and saw that I have had a nausea and fatigue issue ever since I stopped Pramipexole. I have questioned that too. Tbh I am wondering if the ongoing battle has been due to ongoing withdrawals because I was jumping around trying different meds. The Kratom caused withdrawals, Gabapentin caused withdrawals. All the meds I have tried have caused significant withdrawals when I stopped them. It has been a very confusing journey. Thanks for the reply.

[johannasuar]

hi GaryHB, I’ve been in Tramadol for 15 years and never had nausea with it, I have never taken anything else because the Tramadol has always been so good for me. I take one 50mg tablet at 5:3o since my RLS kicks in around 7pm and the tramadol takes about 2 hrs to kick in, and I take another 50mg tab at 10:30. I do get insomnia but after a few days of poor sleep I’ll get a good night, but I’m used to this which for me is much better than an RLS attack. I hope it’s not the tramadol since you said it works great for you too. Could it be withdrawals from the other meds? Good luck.

[GaryHB in reply to johannasuar]

Hi Johannasuar. Thanks for your very encouraging reply. I am very encouraged to hear how well Tramadol has worked for you. Definitely doing the same for me. Its the best med I've been on and hope it lasts. Yes, I agree, looking back I think the nausea may well be lingering withdrawals. A friend here is also on Tranadol and has no side effects. I'm hoping it's withdrawals and they will soon pass. I also struggle with Insomnia with it.

[Bantamdyno]

Hi, they will wreck you liver in time try calming the trigger points🤔