My Dystonia Story: Bengt Erik from Sweden

[@cindypoole9595]

Thank you. You have encouraged me. I also have dystonia. Yet I’m very blessed

[@macintoshimann9892]

I’m going to second what he said do not give up with this disease! Im not sure what’s happening to me, doctors won’t work with me they just tell me to learn to hurt. I didn’t accept this and even though it was painful on my nervous system I spent 6 months manually moving my body the way it should. I found that high doses of THC would give me a little bit better control of my nerves, and id use loud music to give my nerves something to work with besides pain. Little by little I started to get control of my muscles back but it came with screaming white hot nerve pain that eventually got overwhelming. And just when things were as bad as they could I placed my finger to my neck and yabadabadoo my neck untwisted, thoracic came down on top of my body instead of in front of it. My whole nervous system powered back up, I broke out in a fierce set and tears as feeling overwhelmed my body. Sound and vision were much clearer, sinuses better, jaw better, lungs working, it was really an ordeal. After a couple minutes I got up to walk and could stand pretty straight with very good balance. Fear of falling and dizziness was gone. That was a few days ago and im getting better minute to minute. My muscles seem to work if I show them how to move first. Not sure how far this will go but today my thoracic untwisted a good bit leaving me with little nerve pain on the bottom half! The neuro activity is getting less and less all the time and im finding even the most painful places, im able to move if I relax while pushing through it. I hear you don’t recover from this but I have to ask at this point “you sure?” because I am getting better. Keep pushing guys giving up is only giving in to the pain keep your chins up… literally!

[@gloriaalaniz8818]

This happened to me. It started slowly. In 1997 my head got stuck turned to the right. It went away for awhile but came back on and off since. This couple of months it got worse . I take xanex and it helps me a lot. I only take it if I go to work or somewhere else. I live close to the border into Mexico and there you can buy these muscle relaxer really cheap.I don't like taking them but that is what is helping me cope with this situation.

[@kayrobins1599]

Hello, my fiance has been with cervical dystonia for 5 years now. He has been taking different medications but all in vain. How can you help him to overcome it? Thank you!

[@gnmeyer8651]

Please tell me more about your experience with anyone who is Deep Brain Stimulation. I have cervical Dystonia I am currently getting Xeomin, going on 5 years now and they are not working as well as it use to.

[@mariamitsios387]

I am suffering from this exact same cervical dystonia head pulling to left but unfortunately the xeomin shots have not been helping me much and i am suffering from extreme pulling pressure in my face and jaw and can barely function it is so overwhelming i feel as if i’m going to pass out.

[@DystoniaEurope]

Hi Maria, have you talked to your neurologist about different treatment. There is DBS - deep brain stimulation in severe cases of dystonia. It might be something to discuss. In which country are you?

[@mariamitsios387]

@@DystoniaEurope hello and thank you for responding I am in America , North Carolina . I haven’t gotten many answers I wanted to know why it started happening it slowly started couple years after I was diagnosed with lyme disease muscles especially cramp up during cycle. I have heard of deep brain stimulation I was hoping I wouldn’t have to go that route and if I do I will have to travel to mayo clinic and I have bad dizziness so have to find family member to accompany me since I am not able to drive or travel .

[@juliettelecam3213]

​@@mariamitsios387how do you feel now?

[@kayrobins1599]

He stays in Canada.

[@su4914]

❤️

[@zahidsyed2623]

Hi sir my son is 19years old and dystonia patient I need your help for his treatment

[@DystoniaEurope]

In which country are you?