Anyone have trouble with joint pain and eye swelling and redness after taking gabapentin?

What sort of movement disorder?

Hi Stephanie, 

Well it’s permanent, and mainly consists of twitching and jerking. 

Almost all of my facial muscles are involved, such as losing the ability to control my smile, head jerking, shoulder shrugging, acquired  hand deformity  and other things, but I decided I couldn’t live the rest of my life as a hermit.

Even though I have had 4 brain MRI’s during the last ten years, and they can see a 5 mm x 6 mm lesion on my hypothalamus gland at the entrance to my pituitary stalk, they don’t want to say that’s the cause. After recently having the 4th one, they are calling it a non enhancing cyst that has remained a stable size.

The doctors who have seen me have one thing in common. 

“I have been prescribing Gabapentin for many years and it has never caused this.” 

 Even when I present proof it’s a rare side effect, their doubts remain. 

That means they don’t want to offer any help, so I’m giving up searching, even though my primary doctor probably won’t. 

Interesting. When I was 14, I had a 3mm on the anterior lobe of my pituitary. I took parlodel, then pergolide, then cabergoline. The cabergoline finally cleared it after about 15 years. I had vision changes, severe fatigue, and breast milk (which is when I realized there was a problem). 

I’m sick of all these drugs. I’m sick of drug companies. I spent $21k on out of pocket medical last year. Single mom, two kids. It’s just not doable anymore. If anything was improving my condition, I wouldn’t mind, but nothing helps. Doctors say “well you’re still alive.” Am I? Is this living? It doesn’t feel like living. Living is what the pharma execs do with all the money I give them...travel, golf, parties, theater.

And yes, doctors are dismissive. There’s a fairly young female who posts on youtube about a medication causing her symptoms that are similar to yours after only one dose. Let me see if I can find it and I’ll come back. It wasn’t gabapentin, but something else...let me look.

Tricia Morton is her name. Tardive Dyskinesia and Drug Induced Dystonia after one dose of Reglan. 

I’ve watched all of Tricia’s ”Reglan  Diary” videos.

She gave me the courage to post a few videos.

 

 Tricia had nerve ablation to stop her neck pulling. I’d be willing to undergo that. 

I asked a movement disorder specialist if she thought my neck had Torticollis Dystonia, which means jerking movements. “No, you don’t have that.”

“Well, what do I have then?”  - “Your problem is Psychological.” 

What do you call it when a doctor skips an order from the radiologist who wrote, “Clinical Correlation advised?” Maybe she overlooked it, but she handed me a leaflet that explained “Functional Movement Disorders, “Why are all my tests normal?”  

She should have ordered an EEG, and EMG. 

My doctor didn’t agree with her Psychological diagnosis and sent me to Phoenix Arizona, and those tests showed I have Orthostatic tremors. 

 

I think I would call it a complaint to the medical board, because she clearly failed her psych rotation. 

Were you ever able to find relief? 

I agree that pharma execs are living high on drug money, especially when they go “off label “ without proper testing. 

That’s terrible that you spent $21k in one year.  I thought we spent a lot on my trip to get properly tested. We even chose a lower priced motel, and the shower was tepid.  

I think you must be referring to a state’s Medical Quality Assurance Commission. (US)

No help yet, but my doctor hasn’t given up since he helped me find a rare diagnosis.