Anyone else having issues with uncontrollable eye movement with Gabapentin?

elease, you’re right, Gabapentin/ Neurontin can cause a movement disorder because it caused mine after two consecutive 300 mg doses. I recently found online information meant for doctors. “NEURONTIN (gabapentin) | Pfizer Medical Information - US”. It didn’t want to open unless you are a doctor but it allowed me to print it.  Gabapentin is supposed to be started for Postherpetic Neuralgia: Day 1 - as a single 300 mg dose, on Day 2 as 600 mg a day, (300 mg two times a day) Day 3 ( 300 mg three times a day). I wasn’t started this way and it was too much for me.  When you consider that Benzodiazepines also enhance GABA, but at very small doses, doctors should see the possibility of toxicity with adverse reactions. The article also admits that it can cause a movement disorder. I hope you can find a good specialist. Do you have twitching and jerking movements?  I was also handed a pamphlet called, “What are Functional Movement Disorders.”  Must be a popular diagnosis. I didn’t think it was fair that this specialist had it attached to her clipboard before she saw me. Predetermining a patient’s diagnosis before the examination is a type of discrimination. This movement disorder specialist wouldn’t even listen to my neurologist who recommended me as being a good candidate for a medication that lowers Dopamine. He told me that I had the worst case of Ballism he had ever seen, but that medication is usually only  used for Huntington’s disease.  I have relentless jerking movements, but my sleeping meds stop it for about 4 hours. I wish you success of finding relief. 

Thank you Beth for your feed back. I have been diagnosed with functional neurologic movement disorder. I have jerks, slurred speech when I have them bad, dizziness, gait walking, and headaches. I was given Gabapentin for neuralgia from shingles, and when I was hospitalized they still continue to give it to me then along with seizure medicine and Raglan. My husband had them stop it all and I got better enough to go home but the next day I started having jerks, slurred speech and gait walking. It was almost like I had a stroke butf it wasn't a stroke. Neurogist is sendingv me to a specialist at Duke because she said she doesn't know what to do for it. Tthey try to say it's stress related but I didnt have stress, then they want to say it's psychological but good can it be that when I haven't had mental trauma. That neurologist had no clue about anything. Maybe I can get some answers when I go to Duke. They told me the things that were happening to me weren't from the gabapentin. I believe it was.

I’m glad I met you Elease. It’s difficult to find someone like us since we tend to isolate ourselves when we develop an RX induced movement disorder. I decided I couldn’t live like a hermit. One guy was staring at me in a restaurant. When my husband left for a few minutes, he came over and said, “I like your wooden cane.”  I had a feeling he was curious about my movement disorder. I said, “Thanks, but I probably would have never needed it if an RX drug hadn’t caused my movement disorder.”  Of course he wanted to know what drug caused it. I feel like I should warn others, but they have to be curious about my condition first. -  I also filled out a report to Med Watch and asked my doctor if he would back me up. The thank you letter said they only need one or two well documented reports before taking action. Without a report from the prescribing doctor, the FDA isn’t going to do anything. I have done research and found under the question, “Can Neurontin cause Tardive Dyskinesia?” that eHealth.Me has collected public information from FDA reports since 1998, and the graph shows that the number of complaints are increasing. My condition should have been considered as Acute Dyskinesia, then looked for the cause.  I think doctors are waiting to hear from the FDA, and the FDA is waiting to hear from doctors. I’m glad you are going to Duke so maybe you will receive help. I’m also going to a mega medical center in Scottsdale AZ, in January. My new PCP doctor has been very diligent about finding the right specialist. I hope we can share some good news with each other if that misdiagnosis of “functional neurological syndrome,” doesn’t get in the way of sound medical  judgment. 

 My other reply wouldn’t send. Evidently you can’t mention the name of another site. Some people look for online reviews before they decide to take a new RX. I decided that my changed life could help others make an informed decision so I have posted a few videos. I see that you are going to North Carolina. I’m being sent to a large medical clinic in Scottsdale, AZ in January. I’m hoping we will both find help. 

I was on Gabapentin for 2 weeks and had a severe reaction to it which put me i n the hospital for 4 days. I also had blurred vision along with stroke like symptoms. I know have a movement disorder, twitching, jerking, slurred speech, and gait walking but the neurologist said it didn't come from the gabapentin which I don't believe. I hope you get better. I think there's more to this drug than what they're saying.

I believe it all started with the gabapentin. They said I have inflammation / lesions showing on brain now. Optic neuritis. Waiting on lumbar results.

Steroids have been administered without change yet. Thanks for sharing. Any info is helpful

Were you having any eye problems before the increase in dose? My husband had to take Gabapentin before they would consider him for back surgery. His eyes became very bloodshot after 2 weeks so he stopped it. -  Did they tell you where you have brain lesions? I wasn’t informed that I had two small lesions in my hypothalamic gland. One specialist said that would only cause an endocrine problem, not a movement disorder. I showed her a medical illustration that shows that my lesions are near the Arcuate nucleus. She  concluded my appointment. I thought I must be close to something important. After showing the illustration to my doctor, he said, “I believe you have Dopamine leaking from the Arcuate nucleus,” and asked me if I would go to the Mayo Clinic where he used to work, so we’ll be taking a flight in January. I hope your eyes will recover soon.

I wasn't having any eye problems before I started the gabapentin 300. Realizing now that my vision started changing even then. I thought it was normal changes. But after the increase to 600 it became horrible. My right eye lost all sight. Then it came back very blurry. I lost part of my vision the blurriness staying in the same area. They swear it can't be the meds. Damn lie

 My husband started complaining that our house was too dark. His cataracts had turned yellow and his optometrist was surprised that they were already ripe for removal. Have you seen a good eye doctor?

I've worn glasses all my life, but my vision wasn't near as bad as it is now. Things I used to could see with my glasses on or off I can't now because everything is blurry. I don't think the doctors want to say that between the gabapentin, raglan, and whatever that seizure medicine they gave me in the hospital has caused all this movement disorder. Neurologist want to say it's stress related but I had no stress. I worked everyday and had a good life. When they don't know they all want to throw it on stress, mental, or psychological.

I agree that doctors don’t want to blame any RX drugs for causing damage to the nervous system. You can go online and ask for the name of any drugs side effects, in detail. The worst problems are found under “For Healthcare Professionals.”  I had to look up the meaning of Ataxia, which is loss of balance. Gabapentin also admitted it can cause a nervous system disorder called, Choreoathetosis. I found pictures of people’s hands with fingers stiffened into abnormal positions. If I had been told that my constant shoulder shrugging could lead quickly to the tightening of finger and thumb tendons, I would have held onto a blanket while I slept. I’m convinced my hand should have been diagnosed as Choreoathetosis, but the specialist said my hand had “Functional Movement Disorder and if you just stop thinking about your idea that Gabapentin caused it, it would go away.” The pamphlet she gave me said, “The patient may experience too little movement of a body part, like clenching of an arm or a leg which then becomes difficult to move.”  How could I have clenched my thumb over my palm while I slept, which soon led to finger contractures?

When I start having the twitching and jerks, my left fingers go into an abnormal locked position and stays that way until its over and my left side becomes weak again which causes my left leg hard to move. I swear the other night I had an epileptic seizure which I couldn't talk, and my whole body just jerked but yet the neurologist said that's just part of the functional movement disorder. I was not pleased with her attitude or personality at all. I can't wait to go to Duke to see what this specialist says and if he says the same, then tell me what I can do to get me back. I get so frustrated that they can't or won't give you answers. They say my nervous system is fine but one part if my brain says there's a problem and my brain needs to be reprogrammed. Then tell me how!! You know?

 Elease, I hope you don’t mind my suggestion of looking at a video that I think sounds a lot like what is happening to you. This woman has a diagnosis for her condition called, Cervical Cranial Choreic Dystonia. You can Google her video titled “Stress Triggered Dystonia Storm, or Dystonia Attack.”  Even normal things like speaking would set off her storms. I noticed that I had made the most recent comment on that video.  Her condition began in an ER after receiving Tordol for a migraine, but they also added Reglan for nausea that she didn’t even have. Let me know if your condition looks similar even though I don’t think anyone is affected exactly the same way. 

Beth, my husband and I actually watchhed that video and others after I started having these symptoms. It mimics a lot of what I'm going through. I don't talk a lot like I once did because just speaking triggers it. I stay home all the time because noise and society itself triggers it. I have been an outside account manager for 28 years so speaking was all I ever did but I try to text or email anyone because it's difficult to speak without jerking. I haven't worked since Sept 6 and that stresses me because I've worked all my life. I do believe Raglan had a big part in this along with the allergic reaction to the gabapentin. My brain stays in a fog, I get confused easily now, and my memory is not what it once was.

I’m glad you started researching early. I agree that you received a bad drug combination. I’m glad you can still type, but I don’t want you to feel like you have to keep writing to me unless you want to. I stay the same except sleeping meds give me some relief. One time I ate two green grapes while traveling and 30 minuets later, I told my husband that my mouth had begun popping open and slamming shut. He said no matter what I look like, he would love me anyway. I can tell you have a supportive husband. Since your neurologist said your brain needs to be reprogrammed, I think they know that our brain has very small glands in the suprasellar cistern that produce neurohormones that back feed via the basal ganglia. The cerebral motor cortex is where we initiate movements, but those hormones are what keeps movements running smoothly. How do they think they can reprogram us?  Wouldn’t it be easier to learn not to mess up that wonderful system?

elease0926

             I am going through the same crap!!! I have become so emotional because of gabapentin!!! They try to tell me it's not the meds! You're also right they try to blame everything on stress, depression, anxiety! If this med doesn't work they either up the dose or throw another one at you!! It's a vicious cycle!! Gabapentin has ruined my life!!! I am off now only 7 days, but I am going through hell!!! Good Luck!!!

I enjoy talking to you, someone that actually understands what I'm going through. My husband said he notices I smack my lips, take my tongue and move back and forth on my lips, and pop my mouth open and shut when I have the bad attacks. My husband had been wonderful through this whole ordeal. I'm not sure how they're going to reprogram my brain but I just want to feel normal again. I sleep more than I've ever slept my whole life andvthe valium does calm the attacks. It doesn't stop them but it makes it a little easier.

I'm so sorry you're going through this also. Doctors say meds are out oif your system completely in 36 hrs, but they don't think about the lasting effects it has on a person. I just try to stay positive even tho it's hard and take it one day at the time.

 Diane, you explained it well,   “Gabapentin Ruined My Life.”  It does it in so many different ways. Two doctors taking Neurontin,  about 2004 and 2005, didn’t know what was happening to them. There wives were interviewed by the same reporter, under the title, “Neurontin Killed Our Husbands, We Believe.”  Too bad other doctors don’t read it, then maybe they would believe us. 

Beth, 

      It is so ridiculous that these Drs. don't think this crap can do what it does to you!! I told my neurologist what I was going through when I upped my dose!! She said I don't know why you feel so bad!! So I told her I want off!! She says I will give you one more prescription. I told her hell no!!! I think I read that about the 2 husbands, but I didn't know they were Drs. It is one nightmare of a drug!! 

Elise, even though we met under unfortunate circumstances, it’s good to find support. My primary doctor found it hard to believe the movement disorder specialist’s Psychological diagnosis. He asked me if I would go to a forensic psychologist, so I agreed. That doctor  admitted that she had recently finished her training. Little did I know that it was going to be 2 hours of ridiculous questions like, “Who was Catherine the Great?” I had never heard of her, so I said, “She was great.” Haha! I also told her I had accepted my social responsibility by posting videos to help warn others and also joined a Gabapentin Withdrawal Support group. Her evaluation said I spend too much time on social media, which causes stress, and I’m Somatic because I keep searching for help. I’m thankful that my online research includes information from a medical doctor, that seems very relevant to my doctor, and that’s why he’s sending me to the Mayo Clinic. The Mayo Clinic also posted information under Dystonia, which admitted it was important to have a support group. (So there Dr. Negative). Some people in my other group had jerks that eventually subsided. 

Diane,

How long did you take Gabapentin? Two consecutive 300 mg doses is all it took to cause my movement disorder. I learned  how iatrogenic mistakes are handled. 

Beth,

      I was on gaba for 3 months!! Stopped on 11/17/17 but still having fever like feeling, weakness in legs, breathing issues, chills/hot flashes. This has been a nightmare! Took 900mg a day!! 

Diane,

I’m sorry you are having so many problems after recently withdrawing.

Hoping you recover soon. 

Hi Elease, 

Since most neurologists haven’t seen patients who developed a movement disorder from Gabapentin, do you think we could be each other’s witness to show that we’re not alone? 

I noticed when I pressed too long on the blue “ Reply to elease0926,” it gives the option to copy or share. 

I would only do it with your permission. 

What month do you go to your Neurology appointment?  

Absolutely Beth! I go to a new neurologist at Duke on December 6. I'm hoping to get more answers than what the other two have given me. I believe mine iis caused between the gabapentin, raglan and that orther IV seizure medicine that I don't know the name of is what brought mine on. I've had a few bad days this past week. That's why I haven't been on.

Hi Elease, I understand about your having bad days, but thanks for answering my request. 

I’m glad you only have 6 more days to wait. How far do you and your husband have to travel?

I might ask for a consultation with a Neurology professor if the doctor doesn’t know how to help me. My search has been going on for 9 1/2 years.

 Five years ago, my neurologist told me I had the worst case of Ballism he had ever seen, and recommended an RX drug, but he decided to refer me to a nearby Health and Science University. They claimed that I came without a referral, yet I have a copy of the referral. 

No drug should ever be considered more important than a suffering patient. 

 

It's only 2 1/2 hrs from where I live. Supposed to be one of the best hospitals for this type of condition. I'm not one for medicines. Been afraid of them my whole life, and now I really am afraid of them after all I went through 3 months ago. I just want answers as to how this happened, and what I can do to make it better.

You’re fortunate to live that close to Duke. I hope you find answers. 

As for RX drugs, every doctor should test patients for sensitivity by starting low and going slow, especially when the drug affects the brain. 

We’re taking a 3 hour flight to Phoenix. 

 

 

I know and I'm so glad it's that close. I had a follow up appointment with my family doctor today and he said he has no doubts the Reglan has caused my movement disorder because that is one of the side affects. He said normally after so many hours not having it the symptoms generally go away but in my case, with my immune system already being in a weakened state, that mine might be permanent. He said hopefully Duke can help me.

Is that the first time your doctor has seen you since your movement disorder began?  

Of course your doctor chose the drug that has been well reported as causing neurological problems.

I learned from a thank you letter from Med Watch that they need one or two  “well documented reports,” before they take action.

 It’s only a suggestion that doctors send in reports.  

This is the firsdt time I've seen the dad which owns the practice. I've seen his son and son in law, but not the dad who is very knowledgeable. He didn't prescribed the Raglan. I was given that in the hospital through IV. He prescribed the gabapentin that I had allergic reaction to that put me in the hospital.

I recall that you were given  Reglan and a seizure medicine by IV in the hospital.

Neurontin  (gabapentin) was originally FDA approved as an adjunctive (add on) anti epilepsy drug, before they went off label in 1996. The trial, “Franklin v. Warner Lambert,”  brought out that the marketing company that was hired to increase profitability for Neurontin, were paid $12,000 for every written endorsement, then doctors were offered $1,000 for signing these ghost written articles that ended up in medical journal, and that information is what doctors are going by. 

After going over this entire forum, it wasn’t even safe for heidster, who was started at 300 mg for 12 days, then when she added one more dose, her uncontrollable eye movements began with extreme dizziness.

 I don’t understand why doctors aren’t listening to their patients. 

Elease, I just wanted you to know that I was thinking about your trip to Duke yesterday. I hope they came up with something helpful. You’re probably exhausted from your trip, so don’t feel rushed to reply. 

 

Hey Beth,

I went and seen the specialist that handles different types of movement disorders. He said I had Dystonia Psychogenic Movement Disorder and Tremors. He wants me to find a psychologist or psychiatrist closer to home that specializes in that disorder, physical therapy, which I already did and just made it worse, and biofeed. My husband and I spent all day on the phone, even called our insurance company to help find one and couldn't find a single one within 150 miles. He did say since the dystonia was in the early stages prognosis was better than someone whose had it for a year, but it was up to my body how I handled the treatments if it would work. He was talking about they would possibly want to see me 2 or 3 times a week but I'm just so frustrated no one around here can do the treatments he wants done. I go to my regular doctor on Tuesday and hopefully he can help me find someone. If not, my only choice is to keep going back and forth to Duke. He wouldn't specifically say the gabapentin or Reglan caused this, he just said it could have been triggered from different things, genetic, which no one in my family has, medicine, stress, and so on. I'm just beyond exhausted.

Hi Elease, 

The Dystonia part of your diagnosis sounds correct to me, but may I ask if that doctor did any testing before making that Psychogenic diagnosis? 

According to an online article about PNES, (Psychogenic Non-Epileptic Seizures) the National Institute of Health recommends this test:

Google, “Stereotypy of psychogenic non-epileptic seizures: insights from video-EEG monitoring.” 

In case you’re wondering, I was called, “Psychogenic” by my first movement disorder specialist. She put in my records that I had a Psychogenic component since she claimed my symptoms worsened during my husband and son’s 2008 motorcycle trip. - They didn’t have a wreck and I wasn’t left alone. My youngest son and his wife, brought my 3 month old granddaughter to stay with me for a week, which I really enjoyed.

 But my doctor’s receptionist called my other daughter in law every day and learned that my husband was going on his preplanned motorcycle trip even though my RX induced movement disorder occurred 3 months earlier.

Anyway, I called the Movement Disorder Clinic and the office manager told me the doctor who had seen me had finished her Fellowship, and was no longer working there. I mentioned the test that the NIH recommends, but she said, “That’s only given for people with epilepsy.”  

My records also said that I had normal spinal cord activity. That certainly wasn’t proven by a test. 

I understand you’re having difficulty dealing with the changes you have undergone, but I agree, 150 miles is too far. 

  

They haven't done any testing. They are going on the web, MRI and ct scan they did in the hospital and I didn't have these symptoms until the day after I left the hospital. I do believe in having some sort of seizures, whether it's epileptic, or non epileptic but my husband has requested from all 3 neurologist to do new MRI or web and they just say they didn't need too. I'm going to my regular doctor Tuesday and I will request a MRI and web and he will do it. I'm not saying that's not what's wrong but I know me and depression nor anxiety did I have prior to this. I'm just fruatrated.

I meant EEG not web

They should treat it as a new condition that requires those tests, but your insurance company would probably have to give their approval. 

I forgot to mention that too much exercise increases my jerking movements  for about 30 minutes. The only thing I do is walking on my long porch or sometimes along our chain link fence since I don’t want to fall.  During the beginning stages, I needed my daughter in law to help me, since my legs shook so bad that I couldn’t even get out of my recliner by myself.

Within 9 months, I remember driving my 4x4 pickup in the snow, since I needed some excitement. 

I gave up my drivers license in 2012, but if they could make me better, I would try to get it back. Just don’t give up since your brain might rewire itself.

I also love to listen to soothing, uplifting music. 

Elease, I was thinking about you and hope your Dystonic storms are lessening. 

I’m trying to figure out what to take on our trip to Arizona.  It should be interesting going on an airplane with people who have never seen anyone with a movement disorder like mine. I’m going to keep a copy of my Dr.appointment nearby. 

Hi Elease. I thought I would write before my appointment in Phoenix on January 17th.

I’m scheduled to have a nerve study the following day that may take 3 hours. Did you have one that took that long? 

At least we are going to warmer weather. I’m staying as calm as possible. 

Are you having bad winter weather?  We’re having rain here and 47 today. 

Wishing you well. 

Good morning Beth,

I haven't had any neurologist do any kind of nerve testing. The neurologist I saw at Duke said it was dystonia and tremors and recommended a psychologist that specializes in this disease. I've found one close to home and we've been working on brain therapy and trying to help me mentally cope with this new life. It's been frustrating but I'm doing the best I can. Good luck with your appointment.

Also weather has been bad. We got 4 and a half inches of snow Wednesday and temperature hasn't been above freezing yet.

Good morning Elise, I also sought help for coping with my new life, until my husband decided to retire at 62.

You will improve Elise, even though it will take time. You already have a positive attitude. 

The only good thing about my condition is that I laugh easily. Uncontrollable laughing spells occurred during the onset of my movement disorder, which didn’t fit the situation.

Several years later I explained my condition to an online doctor from India. He couldn’t give me a diagnosis, but since I told him about having a 5 mm lesion on my hypothalamus gland, he told me the uncontrollable laughing spells are called “gelastic seizures, and my symptoms would persist.”  He was reviewed by 358 doctors who agreed with him. He charged me $20 for the best answer I had found. 

Recently I found a lady medical writer doctor from India discussing “Dopamine Functions.” Dopamine has a lot to do with our mood, pleasure, memory, attention and movement. She explained that too little Dopamine in our brain will cause movements to become delayed and uncoordinated. On the flip side, too much Dopamine in our brain will cause repetitive tic like movements,

The dopaminergic neurons are located in the ventral tegmental area, the substantia nigra pars compacta, and the  Arcuate nucleus in the hypothalamus gland,

Knowing what caused my condition makes me feel validated, but I wish a doctor would record my problem, and try to slowly deplete some Dopamine.

 Hope you have a good day. 

 

My family doctor wants to do another MRI but we have to wait 4 months before insurance will approve it. I have good days, then really bad days but I'm just coping and my husband had been such a great support system for me.

Hi Elease, it sounds like your doctor is trying to get some answers. 

We’re both very fortunate to have supportive husbands. 

I’ll be back after my trip.   

Well Elease, I was very impressed with my visit to the Mayo Clinic.

For my brain MRI, I didn’t think they could make my body hold still. Two technicians said they had something to help. “We’re going to put stretchy fabric over you.”  It went over my chest and arms, and another one went over my legs. It was snug but not uncomfortable.  

I also had several types of nerve testing. The first one took an hour for preparation by putting on a lot of electrodes and wire leads, and a tight cap. They asked if I would also like to have other doctors, and medical schools to be able to see my test. I thought it would be an important learning tool so I said yes, and signed a release.

Two doctors arrived to conduct the nerve study. I think they record the results of one lead at a time since it took two hours to complete. 

Even though I was told by the neurologist’s RN that the test showed tremors, it takes time to complete the study. I also had the kind of nerve conductivity test that made my whole body jump every time they zapped my arm.

The neurologist asked me if I live close to OHSU, in Oregon, so I think I will be referred there. She also said that Gabapentin has never caused any of her patients to develop a movement disorder and I showed her information from Drugs .commeant for Healthcare Professionals that shows it can cause it even though it’s a rarer side effect. 

 We also traveled to California for the weekend. Wouldn’t you know it, we barely got to our hotel, and the Neurology Clinic called and asked if I could come in for more blood work. Sorry, I’m 4 1/2 hours away visiting our son. 

Hope you are improving. 

I'm glad it went well. When will you get the results? I'm doing treatments right now with a neuropsycologist and I see a little improvement on my brain but still having tremors, jerking, and non epileptic type seizures. I'm having much worse pains in mky legs but I was told dystonia would cause muscle cramp pain. I just had to have surgery last Wednesday to remove a cyst under my arm. Doing fine with that but it seems like one thing after another. It seems like every week I have doctors appointments. I'm just worn out. All I want to do is sleep.

Hi Elease, I agree that it seems like there’s always something going wrong, but man made conditions are hardest to handle. I received my MRI results in the mail along with a CD. What they used to call a 5 mm x 6 mm lesion at the entrance to my pituitary stalk has been renamed as a  “cyst.” Could a cyst grow that big overnight? I showed the neurologist a relaxed picture of me and said I changed overnight to what you now see.  Then she said my movements don’t match any known movement disorder and she has been prescribing Gabapentin for many years and it has never caused a movement disorder. I could have pulled out information but I know Gabapentin has become a doctor’s  favorite drug to give to patients. 

I calmly said, “After searching for help for almost 10 years, I don’t know why I should continue this futile search.”  She saw a patient that was ready to walk away. Then she said, “Your 3 hour nerve study might show something, and I hope you will have it.”  (I imagine it’s a very expensive test) I guess I’m not a quitter, but I can’t stand having a doctor sit there and try to push my buttons. I try to live by the Proverb that says, “A calm heart is the life of the body.”  

Hi Elease,  I haven’t forgotten about you and hope you are doing better..

Has two months made any difference in your condition?

I had a cervical  MRI in February. I asked the technician if they had anything to help me hold still, so she found a strap that hurt my arms, but I told myself I could stand it for 30 minutes.. 

I was glad to see on their report under my History:  “Uncontrollable jerking motions.”

I don’t think I told you that my final diagnosis was Orthostatic tremors. I joined an Orthostatic support group online. There are many people who have difficulty standing still because of wobbly legs, but they can still walk. I have more difficulty walking.

 

During my EMG / EEG testing, I had a little trouble balancing myself while standing up because I had 60 long wire leads attached to me. Since the technician had pulled them to one side, I felt unsteady so the nice lady held my arm. 

Do you feel any buzzy vibrations under your skin?

 

Hey Beth! I'm glad things went well and they've figured out your problem. I have been diagnosed with Dystonia. I have severe dystonic storms which locks my body sometimes for hours. I have had to be sent to hospital several times to get them under control. I'm one 2 different anxiety medicines to control the attacks. I've been referred to a dystonia clinic in Winston Salem NC to get test done and put on proper medication. It's been a long hard battle this last month but I have hope and feel God is leading us to the right place for help. I thank God for my husband who has been by my side and stuck this disease out researching different things, places to help me. He has truly been my rock. I feel some days just giving up, but I still try to hold on to my strength and the good Lord. I hope you are doing.better. my prayers are.with you.

If you go to you tube and look up Elease Dystonia Storm, you will see a video my husband posted at the hospital last weekend. Kind of give you and idea what I live with almost every day

I received your reply after I got back from my spiritual meeting. I don’t know what I would do without a guaranteed hope for my future.

I can tell you and your husband feel that way too. 

During the onset of my condition, I didn’t want anyone to see me, and my spiritual family thought I must be mad at someone, until they came to visit me. 

I think the hardest part about movement disorders is to figure out how to deal with it. I’m sorry that your condition isn’t getting better, but I hope that Dystonia Clinic will help.

 I Googled the name of your video and found it.  How long were you in the ER before they got it under control?  I’m sure your husband said, “No Gabapentin!”  

I know some people sign up to receive a reply so other people can ask you questions. 

I don’t think I mentioned to you before that I’ve  posted a few videos, like “Gabbing about Gabapentin.”  I think I received a reply from a doctor, who goes by, “Kiss my Vape.”  He said, “You have Huntington’s Chorea, and Gabapentin doesn’t  cause this, so look it up!” Well, that condition might look similar to mine but Huntington’s is caused by a genetic disease that doesn’t run in my family.  

I was glad to see you my friend, and I’m sorry you are going through this. 

My prayers are with you too. 

 

I was in this condition for over 2 hrs at home before my daughter was on th e phone who is a registered nurse told her to call ems. My blood p pressure was 179/129 and my pulse was 128 bpm. She met us at the hospital and by the time thgey got it under control with ativan, it was almost 4 hrs total. I've had this everyday but sometime they only last about 20 to 30 minutes but I've had it this bad several times. I just had another one Saturday night at the community center where my husband's band sang. Yesterday I slept majority of the day because it's so draining.

They have on my record at the hospital no gabepentin and no reglan

Elease, I’m sorry that you are going through this every day. I’m glad you have a daughter with a lot of medical training. I developed a 124 bpm heart rate and high B/P, after my adverse reaction, but it’s lower now.

Tomorrow is the 10 year anniversary of Gabapentin altering my life so I’ve  been thinking about what to put in my YouTube video. I wish I could control a smile, but I have to be laughing to manage that. 

My sister wrote me a review letter in 2015 because her Dr insisted she go off Meloxacam and try Gabapentin, because it’s a “Miracle Drug.” She told her she was afraid to try it because of what it did to her sister. She said, “Forget about your sister, you’re not like her!”  

She used the 100 mg for less than 2 weeks, but didn’t like feeling dizzy  and was put back on the other one that worked for her. 

 

My husband was on it for 5 years for neuropathy pain from diabetes and winged himself off of it after seeing what I went through. We leave Monday for Winston Salem. I'm praying for answers and the correct treatment. I've been keeping you in my prayers as well.

My first video attempt was too long, and my sweater kept falling off one shoulder so I didn’t like that look. 

I repeated  the first part because a movement disorder specialist said,  “Gabapentin can cause a Dystonic reaction with chronic use, but always resolves after reduction.”

Then it popped in my head that you had a Dystonic reaction that has been coming and going for 6 months after only taking it two weeks. 

I know it would have been better to get your consent beforehand, but I hope you won’t mind, since you told me you would be glad to be my witness. 

I mainly wanted to inform doctors that Pfizer has published updated information which was approved  by the FDA. 

I still went over the time limit, and got trimmed. 

I titled it as: “10 year Gabapentin Movement Disorder Commemoration.”

I considered, “Spilling My Guts about Gabapentin,”  but that wouldn’t have given a good witness to the cause. 

 

Anything I can do to help, I would be glad to.

Thanks Elease.

I hope you find help in Winston - Salem. I read online that they have an excellent team of doctors who deal with movement disorders. 

 

Yes ma'am, that's what we've been told by several people who has the same condition I have. I will let you know what they say when I find out something. I will continue to keep you in my prayers and thank you so much for the talks, advice and care.

I hope all will go well for you in Winston Salem. 

I’m seeing a Rheumatologist next month since the neurologist said I should have my right hand evaluated. 

My pseudonym  on my YouTube videos is “koolhand Boshie”

 I have to use a hand warmer on my right hand because finger contractures cause them to feel cold.

We’ll yak later. 

Hi Elease, I also saw a very short YouTube video of you, called Elease’s Dystonia. 

Hope you’re feeling better.