Nasty Lyrica (update)

[rkatt]

I posted about my Pregabalin nightmare in May. My RLS suddenly took a brutal turn with savage convulsions and all-over electric sensations. I had intrusive self destructive impulses. I cut Pregabalin quickly over 10 days, anxious because I was going on a long-haul holiday with 10 hour flights. The convulsions became more frantic. Tramadol stopped working. Cannabis was unavailable. I drank large quantities of whiskey to cope with ultra-pain. Over the 12 night of the holiday I took 4 Pramipexole tabs, which I’d previously given up. The Pregabalin withdrawal symptoms have lessened slightly, but both Cannabis, Kratom and Tramadol now bounce off my RLS. I’m waiting for Dr Lechziner of Guys Hospital to confirm Oxycodone as my treatment plan but it’s taking ages (they don’t read their mail and only emails to a very specific address get to them). In the meantime I survive. I had one bad meltdown but luckily no one was around. I’m still hoping this will get better. The withdrawal symptoms go on and on though.

[LotteM]

Oh, rkatt, I am so sorry to read about your predicaments. Very good of you to keep looking for the positive , and I admire your strength of doing so. I surmise it must be very very hard at times, making you feel desperate. Please seek contact on here or elsewhere if you feel you need an outlet or think you won’t be able to cope.

Thinking of you and wishing that the withdrawal symptoms - or whatever they are - subside soon. Very soon. Or that the oxycodon comes around quickly and helps.

[rkatt in reply to LotteM]

Thanks! That’s really helpful. There’s not much I can do except wait so I’m waiting.

[Joolsg]

I’m really sorry to hear you’re having such a difficult time. I can only suggest you try solpadeine Max ( any UK pharmacy will sell them). They are very low dose codeine with paracetamol. It may just take the edge off the RLS and the withdrawal symptoms from the pregabalin.

I know pregabalin withdrawal symptoms can be quite severe as it is an anti epileptic drug so see your GP to discuss the possibility of clonidine to help the withdrawal symptoms.

[rkatt in reply to Joolsg]

Thanks Jools. I’ll try solpadeine. It’s worth a try. Clonodine is a new one to me. If I can get to see my GP (not easy) I’m sure she’ll be willing to prescribe it. She eager to help and very good. Thanks again.

[Parminter in reply to rkatt]

I think, rkatt, that your GP would want to see you immediately if she could read what you have written here. Could you write a letter telling it like it really is, take it to her rooms marked 'urgent', and prevail upon her receptionist-bodyguard to give it to her? Or wait for an opportunity to pounce between patients? Or just sit there until someone sees you.

I know that when I have been in trouble, and been blocked by circumstances or silly good manners from reporting my plight, my doctor has been hugely distressed that he had not been there to help. I now have standing orders to plough through all obstacles to get to him.

I am so sorry for your devastating plight, but I am very glad that you have brought the downside of the dangerous anti-epileptics to our attention. We go on and on about DAS, but forget that pregabalin and its brothers are at least as dangerous in their own way, perhaps more so.

[rkatt in reply to Parminter]

Thanks! I have an appointment with my GP this afternoon and am going to get her to phone Lechziner and accuse him of torture by admistrative incompetence. All he has to do is send a text. However his secretary says he ‘doesn’t go in every day’, which is reassuring x10. I sent him a letter a month ago saying I’d had to stop Lyrica but he didn’t read it. My GP 2 weeks ago requested by letter confirmation of the OxyContin prescription. He didn’t read it. His secretary found both letters moulding in a file. They just don’t read their mail. I’d recommend Lechziner because he seems on the same page as Dr Buchfurer. But anyone who sees him must must must keep phoning his secretary to hurry things along. For eg. I had a sleep study but the important letter telling me how to prepare came 2 weeks after the event. Better still stump up the money and see him privately. Be treated like royalty not like a pleb or character from Kafka.

Sorry to rave.

[Parminter in reply to rkatt]

My GP has handled absolutely everything to do with my own RLS, from in-room IV Iron infusions to methadone.

Do you have to have a specialist/specilaists? They don't know us, or our histories, and very often they are pretty ignorant and do not keep up with the literature.

[rkatt in reply to Parminter]

The GP I see at my practice is very good but practice policy is no opioids unless a specialist twists our arm. I’m nominally a patient of Guy Lechziner but saw him for 8mins in Feb and will never see him again - received a text saying my next appointment is next year and with an underling. I’m sure he has no memory of me. I agree that a sympathetic GP is better.

Thanks!!

[Parminter in reply to rkatt]

Hmmm....... I remember those eight minute things, while they gaze out of the window or speak on their mobiles! Then you have to pay.

[Jumpey]

Hang on in there! Sending love and support. Please tell your surgery you have a medical emergency or take yourself to A&E.You shouldn't be suffering liike this alone.x

[rkatt in reply to Jumpey]

Thanks so much, Jumpey. Something has to change. Support is so helpful!

[Sara_2611]

Ive been bedridden for at least 4 days. as a result of a riding accident. Sometimes my rls gets the better of me sometimes it doesnt

[rkatt in reply to Sara_2611]

Very sorry to hear that!

[Sara_2611]

It was. a bit of a shock

Ive fallen off horses before & all equestrians say always get back on Once I gained my breath & given a minute i did & i couldnt walk after the end of the class & bedridden since

[involuntarydancer]

I'm so sorry to hear how bad things are for you. In your shoes I would be inclined to return to my GP as Parminter has suggested to see if they will give you something to help you while you wait for your appointment. Could you bring some of the articles on the internet about targinact being licensed in EU for treatment of rls? That might persuade them to prescribe it. Also (I'm sure you've already done this but just in case), make sure that your iron levels are high - ask the GP for a serum ferritin test and start a supplement if it is below 100.