Posted , 4 users are following.
For 7 years I've just lived with tardive dyskinesia. I'm 67 now. I suspain my daily neck pain is a result of this movement disorder. I clench teeth and do chewing motions most of the time. I also turn head side to side a lot. its the pain that bothers me.
0 likes, 11 replies
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NooNooHead1981 kris11713
Posted
Hi Kris
You are not alone. I have tardive dyskinesia after just a week on a typical antipsychotic... yeah, I was THAT unlucky.
As I live in the UK, no-one has really heard of it letalone is willing to do much about it. I hate TD so much - the lip smacking, the weird facial expressions, the blinking, the grimacing. It sucks. But we carry on and just get on with it...
Have you taken anything for TD? Tetarbenazine? Pregabalin? Gabapentin? I haven't taken anything at all - just practiced mindfulness and been trying to accept it might go away one day. I live in hope... my symptoms have kind of reduced in the past 18 months so things may improve one day.
Please feel free to get in touch and share anything you need to. Feel free to look at my other posts here too. :-)
Stay strong.
kris11713 NooNooHead1981
Posted
I had a few meds at first; but they did not help : Clonazapam and Gabapenten made me sick.
It's been 7 years now and I have "just lived w it." Now I have dystonia of the neck -- torticollis. has become horribly painful and debilitating --- cannot drive or even stay up all day. Considering Botox: cautiously.
beth47873 kris11713
Posted
Hi Kris, I was 59 years old when I developed Acute Dyskinesia in 2008. I had an adverse reaction to Gabapentin 300 mg. after only taking 2 consecutive doses. Tardive is a more gradual onset. Do you know which RX caused your movements? My facial features are a mess too. It took me quite awhile to see myself as a useful teaching aide. They called me a diagnostic dilemma, so I think it's only fair to show on my YouTube videos what they have overlooked on my brain MRI. Maybe Gabapentin doesn't cause permanent damage to everyones hypothalamus gland, but I have a 5 mm lesion on my hypothalamus gland. They tell me, "That would only cause an endocrine problem," but they might have forgotten the fact that it also makes Dopamine at the Arcuate nucleus, which is right before my lesion. I found others complaining about developing twitches and jerks from Gabapentin, so I know I'm not alone. Doctors really need to learn how to be more conservative in using neuroactive drugs, and never tell a patient to go off cold turkey either. It's difficult to go out in public, but I try to choose one person to speak with so they will be informed, just like I wish I had been.
NooNooHead1981 beth47873
Posted
Hi Beth
I do hope you are ok and staying strong. Do you have TD now or has it gone away? What are/were your main symptoms?
I find that I can keep mine under control up to a point when I'm out in public but 'let it out' when I get to sonewhere private. It is annoying but mine is mild so I am grateful it isn't as bad as some I've seen on YouTube.
You sound very unlucky with your extreme adverse reaction like I had - some people are just very sensitive to meds and react very badly to even the smallest doses. Only one out of the 5 neurologists I saw was willing to say I had TD, as no one would believe I could get it after such a low dose.
I've had an MRI before I had TD but not since, so I would be interested to see what it showed if I ever had one now...
kris11713 beth47873
Posted
You mean you never took an anti-psychotic ? I was taking Geode and had taken Seroquel and I thin Trazadone .... I may not remember all the psychiatric drugs I've taken for depression, which doctor has a word for: it means difficult to treat, the depression kept coming back with a vengeance. S0, for decades I tried a very long list of drugs.
Now I have dystonia of the neck. Try finding help for that !
BTW to younger patients: Botox works !!!
Tell me more about the hypothalamus gland damage --- what symptoms, problems did you have ?
Yeah, I too have some advice for doctors.
beth47873 kris11713
Posted
I probably have neck Dystonia, along with a bunch of other stuff.
Does your neck jerk and pull to one side?
Trying to find a doctor that will try to help me is my biggest problem.
I recently received a diagnosis that fits my shaky legs, called Orthostatic tremors. That doesn’t include my upper extremity movements.
In January, 2018, I went to a Mayo Clinic in Arizona.
First they did a brain MRI. They fastened stretchy material over me to help hold me still. I asked, “Is this a straitjacket?”
I don’t know why doctors don’t want to show me my brain MRI scans. The doctor said, “You have a cyst.” Then she asked, “Do you see any black spots?” “No I don’t.”
I think that white cloudy mass is really a hole, since I would be going blind if it was putting pressure on my right optic nerve, which the report says it’s touching.
I’m giving up on finding help. They recommended I have an annual brain MRI with contrast.and wrote in my records that I agreed to it.
No, they didn’t mention it, and when I looked up Gadolinium retention since my left hand was red and burning, I learned that it can be permanently retained in the brain, bones, and and cause kidney damage. Hope this picture is about Gadolinium. .How are you doing?
Beth
beth47873 NooNooHead1981
Posted
I agree that neurologists are hesitant to admit any RX drug can ruin your nervous system. I’ve never used any anti-psychotic drug. but I use a very small Benzo, 0.5 mg at night to calm my movements or I would never be able to sleep.
Gabapentin / Neurontin and Lyrica have begun to replace opioids, and they are going to unleash a lot more problems.
Have your movements subsided or stayed the same?
I have to stiffen up to get a hair cut. I used to stay home like a hermit, but I missed going out to a restaurant, so I go out with my husband.
I gave up driving because I know they would blame me for an accident even if it was the other person’s fault.
Hope you’re doing well, or at least enduring this problem. Beth
beth47873 kris11713
Posted
THE STRESS TEST****
A doctor put in my records that my movement disorder is caused by too much stress.
In August, I registered to attend a Dystonia Medical Research Foundation seminar on October 20, 2018, in Gig Harbor, WA.
We prefer to travel by motor home, towing a small car, so we left two days early. We crossed a bridge into Oregon. My husband didn't mention the steering had become stiffer, until he almost hit a large light pole while making a corner with a No Parking sign. He said, "We just lost the power steering." Since we were blocking both one way lanes, he unhitched the car, and parked it. Meanwhile, an angry driver must have called the police, since there was a lot of honking going on. The policeman told him, "I could give you a big citation for blocking traffic, but it's obvious you're having mechanical problems." The department of transportation truck arrived, and provided a bunch of Hazmat towels and led him to a parking area, in front of a restaurant. I was thinking, "There goes our trip!" I should have known my hubby would determine the problem, and go for parts even though he was covered with greasy transmission fluid.
I called our nearest son for help, and after fixing one thing, they also found a line leaking anti-freeze. I was ready to go home. THE HECK WITH THAT SEMINAR! No, he was determined to get me there. Stay tuned for PART 2
beth47873 kris11713
Posted
STRESS TEST - 2
Since we were parked in front of a Bosnian restaurant, and parking overtime in a 2 hour parking zone, the owners didn't complain about our 32 foot motor home taking up their customers parking area. That night he drove us to the Astoria Maritime Museum, where we stayed over night. My husband had to drive the car home since he needed C clamps to temporarily fix the other leak, and I reminded him to take time to bathe. I wasn't afraid to stay alone at the motor home, since I read a book.
We left early the following morning in foggy conditions with window defrosters that couldn't dry the windshield, since he had clamped off that hose. We went to our son's house so he could finish repairing that hose. We finally hit the road, and made it to our friend's home at 5:00 PM.
We gave ourselves plenty of time to travel by car to Gig Harbor but we didn't know the GPS directions would get scrambled in heavy fog. It was trying to direct us to Spokane, but he said, "I think it means Spokane Street." I said, "Well it says arrival time is 4.5 hours, so you better try to make it recalibrate."
It finally got us to our destination. I was a little embarrassed to walk into a crowded room since the seminar was in progress.
At least I was glad to hear the first speaker say, "Many doctors consider people with Dystonia, and other movement disorders as having a Psychogenic problem, but it's always a problem within the brain circuitry."
I saw one lady in a wheelchair who has uncontrollable shoulder jerks similar to mine, so I introduced myself. There was a man sitting at a table near me who had head jerks similar to mine.
I wanted to know if surgical denervation could possibly control my head jerks. Another doctor discussed the pros and cons of surgical intervention. She said that procedure helps for awhile, but those nerves can innervate, (grow back) and cause worse problems. They recommend Botox treatments as the safest treatment even though it might take a few times to locate the right nerves.
Our trip had a few bumps, but that's life.
kris11713 beth47873
Posted
Hi Beth, I enjoyed your long story. You are a good writer.
Yeah, many, many doctors of all ilks ten to misdiagnose problems as Psychogenic --- especially older women -- I don't know how old you are; I'm 68. Mine started with tardive diskinesia in mouth and jaw; I still have that. Now movement disorder has advanced into neck, with head movements, and down rt. arm into hands and fingers that just won't be still.
Another neirologist suspects some he calls "Thoracic Outlet Syndrome." I am doing MRIs for him today -- both neck and thoracic spine. I am afraid of the dye; my brother had Acute Kidney Failure, caused by other meds, but now cannot tolerate that dye. I'm going to end here, and look up Gadolinium.
Kris
beth47873 kris11713
Posted
HI Kris, I'm glad you liked my Stress Test trip story. I had to post it somewhere.
We're in the same age bracket, I'm 70.
I don't understand these doctors. I asked a Swedish movement disorder specialist
if she would try Botox injections in my upper back to see if it would help control
my shoulder jerks. Botox treatments was posted on the office window but she said,
"NO"
I made a complaint through the Compliance Coordinator that she discriminated
against my disability by predetermining my condition as PSYCH, before she had
seen me. She claimed she didn't. They also claim that she was assigned to screen
me for a neurosurgeon that I had been referred to.
Well, she influenced the Mayo Clinic neurologist but at least they ordered EEG/EMG
nerve testing.
Then I read my last brain MRI results and discovered that the Swedish doctor had
ignored the radiologist's recommendation: "Clinical Correlation advised." The
woman coordinator had asked me to call her to tell her how my Mayo visit went.
I told her on a message what their doctor had skipped, and I showed 13 - 14 Hz
on my EMG tests. . Since she didn't return my call, I think they did something wrong.
I feel like doctors have chosen to put all iatrogenic mistakes in a dead letter box.