I have history of esophageal spasms,corkscrew esophagus,marked esophageal spasms x 10 yrs vs achalasia. Received 3rd round of botox in 5 years to esophagus in June 2012 under MAC anesthesia in GI lab. Woke up next day with acute torticollis..neck frozen with severe migraine. Did comfort measures x 2 days and couldn't stand the pain anymore..was EMS'd to ER..couldn't lie flat..severe pain 9/10. Had CT/neck xray/MRI C spine which showed bulging herniated discs- never had a history of neck pain. Have been through multiple treatments including PT, tens, trigger point injections per rheumatologist, valium, medrol dose pak, double strength dose pak, steroid burst..20mg bid x 3 days of prednisone, massage, alternating moist heat and ice, rest, then on to pain management..vicodin bid..didn't touch pain, have been to the ER x at least 5 times for flares..with no success..dilaudid 1mg IM x 2 doses didn't touch me..discharged ambulatory..didn't even need wheelchair, pain management started topramax 50mg qhs, then increase to tid, tramadol 50mg qid for breakthrough pain along with fentanyl patches 25mcg q72 hours.no help..cognitive decline..confirmed by neuro cognitive testing at pain management. been a nurse for 22 yrs..at my wits end..sensory intolerance..but the pain is 9-10/10..really severe..can't lie flat. valium 10mg tid didn't touch it. now sleep study doc ordered zanaflex 4 mg. 1/2 tab bid and 1 tab qhs. took first one and slept..head off the mattress fourth night on to a foot stool with pillows to try and take off pressure.. can't turn my head. no range of motion..teeny bit each way with horrible pain. ER hates me..tells me see specialist..sleep study doc ordered me a tens unit today..waiting for pcp to authorize and set up delivery. If I was a horse, someone would shoot me..Also with fibromyalgia,hypothyroidism,hypertension,sleep disorder-idiopathic hypersomnia dx'd today after MLST and overnight sleep study. out of work x 6 1/2 mos ..very sick and dx'd above disorders all since contracting mono in Feb 2012. Has anyone heard of reaction to botox like this..I know it's botulism.. poison..no one wants to touch that question..I am tired of pain and suffering..each flare lasts 2-2 1/2 weeks..can't stand it anymore.. off fentanyl,topamax,tramadol,vicodin, now on low dose naltrexone 4.5mg qhs meaning i can't take narcotics with it..ordered to help with fibromyalgia..took last dose last night..ok per sleep study doc who ordered it to discontinue since did nothing for me..not sure how long to wait before trying pain meds..but meds have been working opposite..wiring me..not helping pain whatsoever..steroids rip apart my stomach..hx of erosive gastritis and don't help the flare anyhow..neither do trigger point injections..can somebody out there help me..
Hi donnamaria, Well I am happy to see your post (not your pain)because I was getting Botox for torticalis ,migraines and severre neck spasams!My left side neck and down are like a rock!!!As far as the pain and spasam sometimes it helped a little and other time I would have symptoms like yours,maybe sot as bad !But sometimes I could hardly move my neck and left shoulder!! I stayed with this for years because I rusted the Dr.and also he did Botox in my head for pain and NO WRINKLES,so I loved that part! Its a terrible place to be,in pain and taking high doses of meds,hardly helps we try everything! Hang in there! Blessings,77grace
thanks 77grace..but my neck pain is after botox in esophagus for esophageal spasms..different situation..would never ever get botox / botulism ever again in my life..now 6 mos later I'm told it is still in my system..God bless you my friend..may you be pain free..
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