Hello @texas1950, welcome to Connect! This is a good place to see what others with similar health concerns are doing for treatments by sharing their stories. While some of the stories you read or hear about are pretty awful, everyone's body reacts differently to the drug. I would work closely with your doctor to taper off of the drug if that is what you are trying to do. I have no medical training or background but think that the problem relates to trying to taper off too quickly and that's where everyone is different.

If you don't mind my asking, can you share a little more about your diagnosis being treated by Lyrica?

John

Trigeminal nerve shingles four years ago. They broke out on right eye, nose forehead and head t the crown on the right side. I was seen at Johns Hopkins hospital in Baltimore. First to a neuro ophthalmic doctor to make sure I wasn’t blind since most people that get shingles on there eye go blind. I was very fortunate my eyesite was intact. Upon healing I started with severe itch, all where the shingles were. Because the itch is so intense I was seen by a neurologist at JHH who did nerve block, and other injections. Nothing worked so he started me on Lyrica to help with the itch. It did help some but I still itched during the day and worse during the night. So I was sent to a neuro surgeon at JHH, who when walked into to the office looked at me after reading my chart and said there is nothing we can do fo4 you, if surgery was done on the nerve a lot worse things can happen. So I walked out of the hospital crying and have lived wit( the itch to date. When I started loosing my teeth I questioned the Lyrica and called Pfizer who told me that in their trail studies they did have people with dental problems. So this is why I decided i5 was time to stop it. So now I suffer with all the wit(drawl wondering when it’s going to stop. Pfizer told me a 50mg tablet will be out of your system within 48 hours. So I stoped it and within 48 hours I was a mess, in the ER for Ifluids, nausea meds. So here I di5 day by day praying I’ll feel better tomorrow

I wish you the best with no side effects if and when you go off of it.

Hi, @cdcc -- that sounds like you did all your due diligence to get the shingles attended to and the itch that trailed after it.

Were other meds, like gabapentin, tried for your itching after the shingles? That did work for me with the itching post-shingles, but I would guess that it may not work for all. I have no medical training.

Suffering through a withdrawal like this sounds really, really unpleasant. I sure hope tomorrow brings feeling better for you.

John I have neuropathy! My feet, hands and legs burn . I would say my pain is a 10 today.

@texas1950, I'm sorry you are having so much pain. I've never had the pain with my neuropathy, just the numbness and tingling. If you don't mind my asking, how was your neuropathy diagnosed? Did you get a specific diagnosis like diabetic neuropathy or was it a result of nerve damage from surgery or an accident?

I think the more you can learn about your specific health problem, the better your chances are for getting something that works for treatment. I was diagnosed with idiopathic small fiber peripheral neuropathy. You can read my story in an earlier post here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=43#comment-65985
Hoping you find some pain relief soon...

John

Almost 8 weeks of me coming off of lyrica and I am still sick. They took me down to 50mg one daily because I am so bad with panic attacks anxiety nausea. They also put me on 0.5 mg of Ativan for the anxiety. Another drug probably easy to get addicted to. I ever wonder if I will feel and be myself again. I try to think positive but the depression takes over. I swear these pharmaceutical companies need to be sued and help people whose lives they have destroyed

@cdcc

I've been taking Clonazepam, which is much like Ativan, for 12 years. I know that I'm physically dependent on it, but I don't think of that as addiction. I take a low prescribed dose, and have the option of taking more as needed. I depend on other medications, as well. Antidepressant, pain meds, decongestant, NSAID for arthritis inflammation, along with vitamins and so on. I don't feel guilty about taking any of them, as each serves a purpose. I also use a BIPAP machine for sleep apnea, which is another prescription.

I took Ativan one time and my heart rate jumped to 180. Very uncomfortable! It's on my list of allergies.

Of course, I only took Lyrica for a month or so, and when I was in the hospital for the reaction to it, I stopped taking it abruptly, and didn't have any problems. I wish I had been able to continue taking it, as it was the only neuropathy medication that worked. That's life. It doesn't sound like tapering off it is any fun, so that might be a reason to be thankful for the reaction I had.

Jim

@jimhd I always appreciate the balanced approach you take to meds and other activities as being a small part of the bigger picture of good health! Thank you for your input in this conversation.

Teresa

HI I am brand new on this site and a lousy typer so bear with me please. Iam on 120mg. of morphine and 600mg. of lyrica for neuropothy pain. have lost about half of my theeth so far but the meds I was on for anxiety are no longer needed. I could use someone who can spell and type for me ha ha. BEWARE of the benzos!! getting off of them is terrible. I could spend all day just telling you how bad they are! If you need pain meds you don't have much choice. God bless and i will be praying for you