I’ve got myself in such a state again, I feel really Ill, teary, and I’m almost in full melt down.
I’ve been taking Pregabalin now for over 3 years, but I recently ended up in A&E with very painful and horrendous colicky growling bowels (sorry, a bit yuk I know) my new GP is trying to get a handle on this and the neuropathic pains in both arms. I’m supposed to be increasing Pregabalin to 600mg a day, doing it slowly at 50mg per week.
But, I hate it. Nothing is touching my pain, all it’s doing is making me very dozy and lethargic, (it’s weird but although It makes me really tired i’ve not been able to sleep at all). I’ve now also got the most awful tinitus. I used to just hear an annoying faint sound like a car running outside the front door, now It’s like a leer jet and gets so loud I can’t think sometimes! It feels like I’ve shut down, I don’t get dressed any more or go out, I don’t use my bed and sleep on the sofa. Sound TERRIBLE I know! I’m in tears now cos I realise how it sounds. Ideally I’d like to come off Pregabalin cos I’ve been hearing that it totally screws your hearing up but I’m terrified about getting that bad neuropathic pain back, I thought I was going to die last time it came on, Pregabalin has at least allowed me to breathe again.
Has anyone suffered the same kind of symptoms with Pregabalin and is there anything better and less toxic. I’d love to have some names to suggest to the Dr. when I speak with him this afternoon.
For prescription drugs, theres Gabapentin. You can take that through the day. Or Amitriptyline, best for the evenings as it can make you dopey. Or ask your MS nurse / neurologist for more options. It kind of depends what kind of pain you are suffering as to what drug would be best.
Many people do use either straight cannabis although it is still illegal (yes, I know, it’s bloody peculiar after all the hoohah about medical cannabis being available after 1st November!) or CBD oil/paste. For info about CBD, do a search on this Forum to get personal recommendations.
As far as I know, the most likely prescribed cannabis is still likely to be Sativex. And you’d need to find someone who is able to prescribe it since not all doctors can.
Hi Linda, on my diagnosis of ppms, an MS nurse gave me Gabapentin then changed my script to Pregabalin and later added Amitriptyline as well. None suited me.
My GP prescribed Longtec Oxycodone Hydrochloride tablets twice a day with a ‘top up’ medicine of Oxy-Norm. These are both controlled drugs for severe pain. I also take Sertraline to reduce the anxiety I have. Linda, these 3 meds are giving me a better quality of life with ppms.
I really wish you well, remember we are all here in the forum to listen and help if we can.
Thanks a bundle for all your suggestions! Very helpful.
So am I right in thinking that you CAN add other drugs on top of the 600mg limit of Pregabalin if you’re still experiencing pain?! I have just had to increase mine to 525mgs and I’ve had no input as to whether I’ll be able to take other stuff and I’m getting very anxious in case I end up with no pain relief.
Hi Linda, don’t know whether you saw my post, I’m wanting advice, as yet no takers, anyway love I can’t understand what you going through, I too have horrible nerve pain, have done for years, I tried pregabalin, made me feel really down, wanted to take my own life, I never felt like before, I was taking gabepentin, but after nearly 13yrs of taking it, it had stopped working, so yesterday saw my neuro, he’s suggested duloxerine, starting on 3omg a day, his oppion is it’s very good for nerve pain, so I’m prepared to try it, as like you the pain is that bad I don’t sleep, just don’t know where to put myself, good luck and I hope this helps.