Bad Episode

[dpacfureal]

You are a beautiful person. The tears in my eyes are for you.

[o10139kea]

This is heart breaking. As a medical student, watching this video really motivates me to study harder and be even more empathetic towards my future patients. I hope to set up free clinical visiting hours on weekends for those who cannot even afford the medications necessary for treatment or a simple check up. I really hope your doing better and these episodes are not so aggressive. Thank you for sharing Amy.

[1216saab]

you poor thing! So wish I could help!

[m0th3rrussia]

you are a amazing person to spread awareness, so brave, urgency for relief of symptoms of this have been on my mind always from the first time i seen this two years ago, its why i want to be a bio chemist, i love you!

[schlaznger]

poor lady

[rainman211]

I'm so sorry for you. I'm so sorry. It seems as though there is nothing that your friends can do. I'm so sorry. How have you been lately? I will pray for you.

[museofink]

is Dystonia a neurological disorder or a hereditary disorder? I'm sorry you had to suffer like this, is there any way to lessen the cramping of your muscles or is it something you just have to grin and bear?

[J0hnnyev1L]

You are very strong to post, I admire your spirit. Much love to you and I hope that your episodes only continue to get smaller and easier to deal with. You are awesome :)

[hamaramadarat]

I'm really sorry about you. Nobody diserves this, so where is God now?

[darkgreenranger]

How hard is it to breath when something similar to this severity occurs?

[miasmablk]

i hear that being near things such as cfl fluorescent lights and electric pole ends and things that emit large electromagnetic fields can induce fits. something i heard from another dystonia sufferer here on YouTube awhile back. however i have no idea as to how true it really is. i however can relate to neurological disorders as i suffer from uncontrolled tonic clonic seizures

[MrMrweedkilla]

I think you are cute, even with your disorder.

[datzfast]

befor we accuse her of being an attention whore medical and psycological evaluations need to be done.

[thiskidglows]

It's so hard to "like" these videos, i'd imagine that is so tiring in the very least.

[blacklannmuzik1]

I must admit, Amy. I cried watching this. Truthfully, I'm crying right now. I am praying SO hard 4 you. And I am praying 4 a cure as well. I hope you're doing better. I hope that was the last bad episode. I don't know you. And I've never met you. But I love you. Stay strong! xx

[kaloopsk4]

dont worry you are still pretty during the seizure!

[iamwatchingu1000]

Hello Amy - Thanks for documenting your dystonia. My nephew suffers from dystonia and has had a feeding tube for three years because of problems swallowing... Today he was also diagnosed with scoliosis and arthritis in the hip area. I am curious, have you ever heard of a connection between dystonia, scoliosis and arthritis?

Thanks again for your activism - you have inspired me.....

[freedomvoice7]

Amy u may have cervical dystonia... so there is a treatment for that which is Botulism toxin (Buttox)...I suggest to refer to a neurologist and discuss this option with him...

best wishes for u ,,,be strong

[catsalive1]

I have had ST for 20 years and know the agony that she is suffering. I was not that bad, but bad enough. I recently tried MAGNESIUM 750 MG and for the first time in 20 years my ST is 90% in remission. PLEASE GIVE IT A TRY!!!

[goodxbadxugly1]

she is in pain. it is painful. i was put on seroquel (an antipsychotic medication) for 3 days and i began to have severe spasams like this. it was the scariest thing ever. this makes me cry because i know what it's like. it's scary. i wouldn't know what to do if i had to live with it. amy, you are my hero.

[dnt124]

i'm crying rihgt now because it looks like you're in pain and i can't do anythign to help. i will keep you in my prayers

[PostHuman2113]

Prayers won't work, donate money to biomedical research!

[sarahjv66]

babe u look in so much pain my heart and thoughts are u with you

[jinspade16]

Stay strong Amy! U are still beautiful nonetheless :)

[kittypride2]

How're you doing now? Any better?

[rocknrolltimbo]

good luck amy , btw how do u use the bathroom with all the movements? Stay strong

[DrivingMyLifeAway]

OMG. I cant believe that someone can actually have something like this. To be honest. I would rather die than to have to live like that. That is so horrable. Is their a treatment or anything? Is it like a virus or how do you get it?

[wyndchimer]

I see you and I see my son. We couldnt figure out what was wrong, its a scary thing and the pain you go through ..my heart goes out to you. The ER gave him a IV with a muscle relaxer which didnt even faze him.. not until they gave him a dose of Benadryl did he come out of it.. within seconds. Have you tried this? He now has to carry it around incase he gets another attack.. Much peace and love Amy..

[autumnslazybones]

I am so sorry. No one should ever have to suffer like this.

[CWBHaystak4life]

I have this disorder and this really scares me to death! I am in the early stages of it and I don't know how to treat it. I have tried the botox but it hurt really bad and it kind of made it worse. What are some other things I can do? I am crying right now watching this. I am really scared!

[Cdouglas0906]

how do u treat this? Just pills?

[kittypride2]

I have tears in my eyes. I don't like watcching people suffer!

[kittypride2]

I hope it didn't last the whole day!

[danielayad]

weed can help stop the spasms, just like patients with cerebral palsy

[Evilution212]

Thank You for posting this. I suffered a Dystonic Reaction after taking only two doses of Haldol and never fully recovered. I still get bad tension in my neck and face, almost feels like mild seizures. I think this is what I have, but wouldn't know for sure since I don't have health insurance :(

[suckbar69]

I have had one as well. It's only been a week but I still get panic attacks and anxiety. I don't know if the anxiety is fear of it recurring or an acute reaction itself.

[icaleod]

Move to Canada, dude. Seriously!

Oh, I've heard of that before- what you have is called tardive dyskinesia (syn: tardive dystonia) resulting from the haldol. It has something to do with the fact that haldol is a dompamine antagonist, right?

[papay19]

dystonia

[Lunica]

And i thought my life is hard. After watching your videos i understand how small my daily problems are. I'd say i'll remember you in my bedside pray but i dont think god exists.

[Sourblob]

When your having this attack? Are you able to breathe? Is this kind of like an anxiety attack?

[bubzmama]

even with such severe discomfort, you still have a wonderful disposition. so much strength. this initially broke my heart, but folks like you are the driving force behind finding a cure and educating others on such a devastating ailment.

[DrFunk7777]

you're extremely courageous Amy.

Thank you for sharing this.

[JacqueDanielle89]

So I noticed they were massaging your arms in the end. I am going to school for massage therapy. I think it would be awesome to help dystonic people but would a massage trigger an episode? I can see maybe how it would help if one had already begun.

[hokiejane]

This brought tears to my eyes. I'm so sorry you have to live with this, Amy. Stay strong.

[surrealmax3]

When you have en episode, You can feel where the tensing is? I think it might help to focus on the parts of your body that aren't being affected, and hopefully the stable energy will flow better into the affected areas.

[Jibahyiska]

blessings to you Amy

[oddsource]

keep it going! Videos are worth millions of words. I hope they find a medication that has less side effects for Dystonia.

[kaazoom]

You are very brave to share this video with everyone and raising awareness of how terrible dystonia can be. I have a movement disorder which has yet to be diagnosed, although I have been given the usual psychogenic nonsense, fortunately for my pain is usually not a big issue.

[Kizzyisgod]

do you ever get shortness of breath? because i know it effects your muscles so does it effect your diafram?

[kieran041192]

shaky amy i hope you find a medication to help :(

[gzbrown]

Amy, I am so sorry you are living with this. I had acute dystonia in the hospital brought on by an allergy to Compazine. It was one of the most painful and worst things I've ever gone through. I hope they find a cure soon, and admire your courage for putting this out there to inform people about this horrible and painful condition. Blessings to you.

[brec0mpton]

i hope you are better.

nobody should their life for granted.

;(

you are a very beautiful person.

god bless.

[AngelinaNYC]

Please have your physician look in to

Moersch Woltman Disease commonly called Stiff Man Syndrome...you might find some answers. Good luck. I share your pain. Ciao, Ainslee Grace

[mirfarhangf]

I am sorry amy.I didnt mean to hurt you.I am sure you're under alot of pressure.I hope you will find a cure for this soon.I pray for you.

[ShakeyAmy]

Thank you so much for bringing this up. 1% of Dystonia patients actually have psychogenic Dystonia. I would say because of this myth, almost all Dystonia patients MUST see a psychiatrist before getting a proper diagnosis and treatment. Ignorance like yours is the wall we face. I believe if you had this disorder, you wouldn't have posted such a misinformed comment. People like you are the reason I am here: to educate. So thank you!

[ElaineCA58]

Amy, I really empathize with you. I have similar episodes in which my throat locks.I have posted 2 other videos....but I'm hesitant to post the 3rd, because I don't know that I can take the criticism. To be  suffering to this degree and then be criticized, I'm not sure I could be as graceful as you are. Thank You for posting these and trying to help others. It's appreciated. You may have given me the courage to post my 3rd. I'll have to think on it.

[tinasattler1]

ilbe praying fore you

[potteredwards]

I will keep you in my thoughts.

[stsaylor29]

thank you for posting, i have dystonia too, it happens in the back of the neck . It happened after taking psychotropic medications. I cried at the end because I am proud of you!

[joelover3690]

what happened to you

[SEBwear]

Omg I'm so sorry you are living with this:(

[Sirkll]

PNKD and Conversion Disorder are two separate things, but they both present the same so it's tough to say. I have experienced similar symptoms for 10 years. Not really disturbing unless they lead to life threatening situation. As long as you are in a good place, keep calm, and ride the contractions out they usually are manageable. The "fist squeezing"analogy is apt. They do stop eventually. When they don't, thats when you want to be near someone who can call Dr just in case. Good luck to all.

[toptierproduction]

It looks painful. I'm so sorry...

[GROOVEY1969]

so sorry amy i hope they find a cure for this soon.

[segma75]

My prayers to you Amy, wish I can help......

By the way....God! how good looking and beautiful you are,

[aliciap1214]

Amy, I am so sorry to see that you are going through this. A friend of mine asked me to watch this video so I would have a better idea what she is going through,too. Thank you for being willing to share this with others. You will be in my prayers daily. In love and light, Alicia

[EnnaTemple]

Amy,

I too have dystonia (Myoclonic). I am having problems with Doctors and finding treatments for me. They used to give me ativan or valium when I had a bad episode. This seemed to knock it out and help. This time they refused to give me anything. You mentioned Baclofen, I take it orally 3x 10mg day. I was curious about the Bac pump?? I have not heard of this, could you get back to me?

Blessings

Anne

[ShakeyAmy]

The episodes before the baclofen pump could go for hours and were very painful. I would lay in the fetal position on the floor while my body seemed to do crunches and not stop moving. now with the pump they are smaller "attacks" and less frequent or as severe.

[MsKartal1]

@ShakeyAmy

Hallo ich habe auch torticollis,ich gehe am 27.07.2010 DBS operation.Ich habe dich sehr liebt.ich möchte mit dir treffen.ich lebe Deuschland.ich kann dich auch sterben.Meine liebling.Erlaub bitte ich möchte dich küssen.gruß--Gruß

[suchacataclysm]

When you get really bad episodes like this, how long do they last? And how often do they occur?

[rainywoods2]

Thanks for posting this, Amy. So sorry you have to endure this :(

[kcleugh]

Hi I don't know if you recieved my previous post. My brother in law appears to show the same symptoms as yourself, but he is having trouble getting a diagnosis and tests. He is currently being seen at Kings College Hospital. If you have any advice it would be much appreciated.

[strifera]

my PNKD or conversion disorder (not sure which but PNKD is slightly more likely) has symptoms that present similar to this, just popping in to say I feel for you, I get usually 2 hour attacks of severe muscle tremors, muscle contortions, muscle locking, and twisting bouncing and flinging movements in my upper body and at worst case I will have spasms in my diaphragm that prevent breathing or usually just prevent enough air to make sounds, and afterward all the muscles involved have awful cramps

[reyesblondie]

i am so sorry..im praying for u, i no were ur cuming from i had to suffer to, i had sydenhams chorea

[LONGDISTANERUNNER]

MY PRAYERS R WITH U.....U R BEAUTIFUL

[aidanne07]

I feel so sorry for you, that looks really painful. I hope you get the help you need

[etsschu]

Stay strong!!! You're a beautiful woman and courageous for opening yourself up to people on the internet.

[markbucko]

why plaster people with things wrong with um over the internet it not fucking right how wud you feel if it wos you.you fucking brain dead fuckers or wot about if it wos a member of you family and you found it on here knowing people wud laff at it how wud that make you feel

[mav1234560]

It's called awareness and also takes a lot of courage. You have the option whether or not to watch videos on here. It is interesting that you chose not only to watch it, but to then attack the person courageous enough to post it. This is clearly beyond your understanding and maybe before watching a video, next time you should read the poster's comments.

[PandyFackleresque]

Good on you.

[pixie1310]

Is it the muscle contracting or what?

[etsschu]

I know this is an old comment, but with dystonia sufferers, the brain sends unwilled signals to the muscles causing them to contract. As you can see this can sometimes cause a great amount of pain when the muscle tense up. The best example I can think of is squeeze your fist as tight as possible for as long as you can. That pain is mild in comparison.

[pixie1310]

wow! that's sad...

[ramset]

Amy...

Thanks. I'm in the beginning stages of cervical dystonia and it's not quite as bad as yours but I've been watching other videos So I know what I'm in for. I appreciate you posting things like this. Believe it or not is helps me. So from the bottom of my heart, Thank You.

[pixie1310]

Did that hurt? Could you breeth?

[KJacobsonMD]

I had a very similar thing happen to me when I first began to take Paxil. It was awful. I feel for you, this brings back painful memories.

[Moffeliten1]

I pray for you

[asburyparkangel]

dear amy, I will be praying for you, I too have struggled with this distonia for a year & ahalf. You are a brave woman. Please pray to Jesus & He will heal you. It's not God's will for you to suffer this much. Keep looking ro Him.This too shall pass & He has a beautiful plan for you! God bless you. If you'd like to contact me, google anita ferrer.

[EyeDunnoEither]

I have read all of the comments...

and I have no real comment of my own, I can't say I know what it is like, or I understand your pain.

I hope your footage can give medical science clues to put them in the direction to helping yourself and others with this disorder.

You are a charming woman, who I see as brave an beautiful. Bless you.

Monika A.

Dumas, Tx

[netengeargirly2k]

Hi Amy I to have Cervical Dytonia. I have had it for twenty years now. It's been very hard to live with and many people in my home town of Fort Smith arkansas has even made it worse by making fun of me and calling me names that I don't deserve. People are cruel.Not one time has any of the city leaders been kind to me. People are very cruel. I have found this out the hard way. Wishing you the best.

[kubu79]

I'm sorry I have to correct you..not people..stupid desperate ignorant people! Of course I'm not one of those. Regards go to you and hope you're going to get well.

[renokess]

Thank you for sharing Amy. Sending warm thoughts and prayers

[monavieuser4ever1]

It's not disgusting at all. You didn't chose to be born like this.

[kubu79]

Oh please

[NeneLindo13]

ive had Cervical Dystonia 8 yrs ,i have been able to control it with very good medicine and the greatest neurologist

my thought and prayer are W/U as well

Nene

ps.feel free to comment as well

[Camchi101]

The condition is called dystonia. T happen to have it too. My episodes are painful- my eyes roll up in my head and get stuck for a few minutes, my neck bends back and forth and gets stiff, almst to the point of convulsions.Oh yeah some medicines like Benadryl can relax your muscles and make an episode stop. I take some when it happens and in 1 or 2 minutes it stops. When it first happened to me I went tothe ER because my parents didn't kknow what it was and I stayed in the hospital for 2 days.

[hotlez008]

does massaging help or is that too painful??? isnt dystonia a type of muscle spasm?

[RS7643444]

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[RS7643444]

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[susyglow]

i feel so sorry for you darling

[yemmas]

I only have experience of twisting and contracting of my feet and legs/hips. But it is so painful. I really feel so much for you. I have only been having these severe spasms for about a 10 days and I am already so exhausted. I can only empathize.

You are in my thoughts and prayers, Ammey