New to forum,I have generalized dystonia,would love advice from you all!:)

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Permalink Reply by deejay on September 10, 2009 at 1:14am

Hi there: My name is Debbie and I can relate to what you are saying. I was told also that I was the worst case that my Dr. had ever seen. I go through these seizure like attacks where I have no control over any part of my body, it's like a scene right out of the exorcist. With all of the violent twisting and contorting it actually knocks my spine out of wack, literally pops the vertebra out of place. I take Lorazapam 2 mg and it stops these attacks within minutes, then you have the painful and grueling task of getting back on your feet, it's the pain, mindbending pain that is the hardest to get through. I have no patients and am soooo cranky. My family has a hard time dealing with me, quite frankly I don't blame them. I have a hard time standing myself during these times..
I am 44 and also was told that I have arthritis and the twitching was from taking too many drugs. The only thing that makes the pain better for me is alcohol. I'm not saying that this is a treatment in any way, what I am saying is that I get so desperate for relief that I will use whatever works. We all know our own bodies better than any doctor does. He may have the training but we have the experience as to what does and what doesn't work. You know your body better than any doc does my suggestion to you is to stick with what works. It's your body you choose. I sleep in an ultramatic bed which the head and foot of the bed are adjustable, and it has 2 heater and vibrators in it. 1001 positions to it. After not sleeping more than an hour during the night for about 2 years, we invested in this bed and after 5 nights I had my first full night sleep. What a difference a good night sleep makes. I use pool therapy floating (0 gravity relieves pressure on spine and nerves) and hot tub for pressure points and this helps to relax the muscles. Meditation, chi and chakras all help as well. I personally choose to stay away from meds as much as possible, there are times when it's all that will work. In June of this year I was walking 8 km a day, normally not twisted or bend and my feet responded too. I was walking like normal people do. This lasted for about 3 weeks and back to point 0 again. It's a rough road no matter how you look at it. I'm hoping that one day the roller coaster ride will stop and I will get off for good. I use canes and a walker when it gets bad, but never in public. I tend to stay away because I don't like people staring at me.
These are some of the things that work for me I hope that you too can find relief for yourself, Your body, your pain, your choice. Take care for now. Deb. xxoo

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Permalink Reply by anastasia on September 10, 2009 at 7:36am

Debbie thank you so much for sharing your story,it feels good to know I'm not alone.I agree with the hot tube although I use my bath tub and make it as hot as I can stand.Sometimes I art by 4:30am depending on how bad the pain is.I was given oxycotin for night time but I'm not to keen on narcotics,on the other hand my husband said why complain if you don't take the meds,right?And the staring,well I just called my counselor because I just am having the hardest time with this issue,people can be so rude.My sister said they get scared at the looks of me because I'm so young,god forbid you get the trmors,they treat you like your contagious,it makes me so self consious.I was always extremly active and to go from normal per say to housebound is soooo hard.I always say if I was born this way I'd know no different,but being fine to chronically ill is hard,don't you think?I do take sinemet and it works although I took staelvo and it worked better,my new doc insist I stay on plain Sinemet?Do you take anthing in the parkinsons family as in meds?My rheum wants me to start requip at night but have to ask the neuro,all good at least it's not another pain med!The back pain is so bad and I stay stooped,do you?Sorry for all the quetions,I am full of them:)

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Permalink Reply by deejay on October 21, 2009 at 1:15am

Hi anastasia: Sorry I took so long to get back to you, still on that roller coaster. Back up again and doing good. Yes I get those tremors too, I take a herb called Gotu Kola which is all natural and it takes them away. It also balances the dopomine, seratonin, and melatonin levels in the brain as well as a natural nerve tonic. It is also a detoxifies which is good when your housebound, the less active we are the more toxins we build up. It's a viscous cycle.

I tried benzoprine hope that's the correct spelling. It left me with a splitting headache for a week, and it didn't stop the twitching completely. The lorazapam stops the twitching, spasms completely but it seems that the more attacks I get the more of the drug I need. the last one took 2.5 mg to stop it. I get real loopy with it. I only take it when I have an attack and I started using it in May of this year.

I'm glad to hear that you have a counselor, the more people supporting you the better!

I too used to be very active. Single mom raising 2 kids and waitressing to pay the bills. It's really hard to be on the move all of the time then one day find yourself unable to do anything. What we took for granted seems like the best gift in life now. It really changes ones outlook on good health. I just take it one day at a time and look at the small things. Today I am in a walker, tomorrow I walk with a cane, it's an improvement and before too long I'm walking without anything. I give myself a pat on the back every time I can do just one more thing. Every cloud has a silver lining and sometimes it is really hard to find, that's when I look harder for it. Even if it is having the ability to hold my coffee cup without firing it across the room. It's an improvement and that's how I get through it.

I was haunched over for the last 5 years and about 2 weeks ago I did this wicked adjustment, my sacrum popped back into place or at least close to it, for the first time in 5 years I am proud to say that I can walk straight. Forgot what it was like. Now I can see that the sacrum was putting pressure on the sciatic and just adding to the misery. Now that's one less thing to deal with. I had another attack right after and was back to the haunched thing it has come back and I am straight again. I am determined to beat this thing. I like you do get so depressed, lets face it who wouldn't. There were times when I wanted to jump off of a bridge just so the pain would stop. The only thing that stopped me is that I couldn't walk that far. lol

I had the last attack at a friends house who before that day never seen it, she like everyone else said the same thing it's horrifying to watch. You can try to explain to people what it is like, they don't understand until they see it for themselves.

I took a fall at work almost 5 years ago. Did the splits on a ceramic floor, I twisted my tailbone to the left, jarred my sacrum up and out and my spine went into my brain damaging the basil ganglia. I continued to work for the next 5 months and the last day I couldn't even get out of bed. Eventually my spine looked like scoliosis. I seen every specialist and took every pill that was given to me and nothing worked. I only have 1 good kidney and I was passing blood. So I flushed it all down the toilet and searched other avenues.

My family doctor was stuck on arthritis being the cause, till I had an attack in his office and punched him upside the head. It was a spasm!! Think I finally convinced him that wasn't the cause. LOL

I sooo understand about people and how rude they can be. Most people think that I'm drunk, I should really use a cane and maybe they would look at me different. I remember the famous words of the real rain man and i quote "Don't judge me because I am different, we are ALL different". People tend to judge what they don't understand, so I try as much as possible to educate the people as to what dystonia is and it really makes a difference. I'm trying to be positive about it, there are times if I could I would like nothing more than to sucker punch them.

I too have been looking for someone else with generalized dystonia, I too have loads of questions. I don't know anyone with it. When you have the attacks can you sit in a chair? I bounce right out of it. I once had 3 people holding me down and I still flew off the chair 3 times. My legs are the first to go how about you? Mine started with my left leg twitching, a year ago June is when the full body attacks started. Do you paralyze? Do you have feeling in your body? Needles, mosquito bites, burns I can't feel any of those things. I find bruises and cuts and have no idea how they got there. Stress is my #1 way of kicking the dystonia into gear, how about you? Do the attacks become violent? Do you have bouts of insomnia? My turn, sorry for all of the questions, please don't hesitate to ask me too.

Take care for now. Deb. xxoo

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Permalink Reply by lexiesmom on November 5, 2009 at 7:10pm

Hello deb
my name is Irene and I am here as a representative of my daughter..... she is 14 and has primary generalized dystonia as well. I read your segment and felt her pain in your writting. it is so hard people dont know what to do when they see you have a spasm they are afraid and embarrased and often act the wrong way. Lexie is my daughter and she has anywhere from none to 15 a day. 15 is usualy requiring a hospital admission. she often feels burning in her legs before they start they take her from her toes to her head and yes she has come out of more than 1 chair in the past year sense this whole thing started. She is alert through everything and often can feel to much....she is oversensitive to touch, even a BP cuff causes her immense pain. hers started with a locked jaw 1 1/2 years ago progressed to her neck and now is full body. several doctors a psych eval (because if they dont know what it is it must be in your head) and lots of meds later here we are. She now has a great neuro in Worcester and has been to Mt siani in NY for a eval for DBS, we still have a few meds to try but the DBS is a option if teh meds fail. She is on artane - klonapin - effexor - ativan - gabapentin - tegratol - vit d - iron, two years ago we couldnt get her to swallow a vitamin now she takes pills 4 times a day for a total of 22 pills daily! Her attacks cane be violent to watch she often just seizes up in 1 position but can be "pulled" into some very contorted positions. 1 in a million is what teh Dr's tell us stress sends her in to teh spasms but so did her menses so we stopped them chemicaly being sick will do it just got out of a 7 days hospital stay because of teh flu she had spasms every 1 1/2 to 2 hours and required to much ativan to break them, how come this disorder is not publicly talked about more we need to get goodmorning america or oprah on board and get then to get the word out and increase research!

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Permalink Reply by freida may on September 10, 2009 at 10:55am

You sound just as my story goes. I was first told i had Fibro, then sent to Rheamtolgist that said i had Rheamatoid Arthritis. i was given muscle relaxers but then 2 years later after no drug would work, still having pain and muscle spasms the gave me gave me ENBREL. That is when my body went into a full spin. And it took the Mayo clinic in Arizona to say I HAVE DYSTONIA. I said what is that, but we tracked it back several years as they were treating the Rheamatoid Arthritis that is wal truly the Dystonia. I use Sinemet 25/100 3 x day and Klonapin 1mg 3xday and i have had good results. For depression i use Wellbutron and that helps with the bad fatigue. I f you would like to talk my email is fmay7291@yahoo.com or i am shuffles on the dystonia forum.

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Permalink Reply by anastasia on September 11, 2009 at 6:08am

Shuffles oh my God it's me from the dystonia bullentin board Maggiemay!!!!Yes we had the same experience you helped me get my dx after remicade,the FDA now post movement disorder as a side effect,I just found another woman a doctor reported suffered dystonia after remicade on a docs forum.I'm so glad your here with me.I told my NEW rheum. about you 2 weeks ago.My e-mail is jhojnowski@verizon.net,I just want you to know that your the reason I didn't give up,I was at a point were I had just given up and then you told me your story and it changed my whole life,cant thank you enough including my husband and children too:)My number is 856-845-1175 feel free to call anytime and again THANK YOU and stay well,so excited we get to chat!

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Permalink Reply by Jenn on September 28, 2009 at 10:03pm

Was the wellbutron prescribed for depression and it just happens to help with fatigue or did your doctor prescribe it knowing it would?

I can keep my spasms under control as long as I give into the fatigue and sleep practically all the time. But sleeping so much doesnt help me day to day .. you know?

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Permalink Reply by Jouilhet on September 18, 2009 at 12:50pm

Hello,
Im Jessica and Im 25 years old, Im mexican. I started with dystonia symptoms when i was 12. I used to have spasms just like you, and I bent as well everytime I walked, I had abdominal contractions which couldnt let me breath.... I was really bad.. I took sinemet, hypokinon, artane, baclofen, etc etc and none of them help quite much, but when I met Dr. Simpson (he is in Houston, in Methodist hospital) everything change, he made me the DEEP BRAIN STIMULATOR surgery, I can only say WOW!!! you wouldnt belive how different my life is now, I can drive, walk, work out, I dont have any kind of spasm, my contractions are gone... you really need to think bout having it, it will change ur life....
if u need anything here is my email: jouilhet@hotmail.com
take care and good luck
Jessica

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Permalink Reply by anastasia on September 20, 2009 at 8:40am

Hi Jessica so nice to meet you and I thank you for responding!It is my dream,truly to have DBS,I would do it in a heart beat,but the docs have to recommend it and I wait patiently.:(Acutually I have been really upset about not being asked to,I search for where to go,and I'm soooo tired of living this way,it's painful,embarrassing and you sound just like me,all I kept saying was I want to be normal again,drive,work,walk straight again and stop those terrible spasms.Please tell me a little about yourself and how they knew you were a candidate for the DBS!Thank you in advance.Sooooo Glad you are BETTER!

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Permalink Reply by lexiesmom on November 5, 2009 at 7:16pm

could you contact my daughter who was also diagnosed at the age of 12 (3 weeks before she turned 13) and is now 14 and feeling like life will never be good again....... we have been to Mt Sinia in NY and are loking at having DBS in June 2010 if meds cant get this under control. She has primary generalized dystonia and it takes her fom her toes to her head. Her friends and school are soooo hard for her right now and she keeps telling me i dont understand,,,,,,,,,,,,,,,,,,,she is right I want to understand and help but I havnt been there you have. I am not sure if this is ok but i am going to give you her name and email so you can contact her.
Alexis Johnson goes by Lexie
my email for her is Irenepjaj@yahoo.com
It would mean alot I think for her to hear from someone who has been in her place

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Permalink Reply by Lymph Man on October 20, 2009 at 9:29pm

I hope this helps you. With dystonia you need to look at the lymphatic systems role in removing excess acidic waste and proteins from the nerves and structures of the brain. The lymphatic system is an emerging science that is not utilized in the understanding of most disease including dystonia. The lymphatic system is a tiny network of vessels and nodes that must remove a small portion of cellular waste (parts of dead cells and lactic acid) from the body, even the nerves. When the lymphatic system cannot remove waste from your nerves they begin to build with scars from the buildup of waste. This scarring limits circulation and health of the nerve and the area that it innervates. First you should check your saliva and urine pH with a simple at home test strip. I believe excess acid in the body (even if you have no visible signs of acid) is slowing your lymphatic system allowing waste to build were you have the least circulation. Your pain, sleep problems, depression, seizures, fatigue, spasms and stiffness are due to acid waste building in your body and nerves. Learn about acid-alkaline balance another emerging science that explains how our body's are meant to be in balance or neutral and not too acidic or alkaline. When you are in balance you improve lymph flow and detoxification of acid waste from the body.
You must be proactive to learn ways to increase lymph flow in the body; being well hydrated with alkaline water, deep breathing (moves waste out of nerves and organs, into the veins and lymphatic vessels), stretching and some gentle exercise to move your blood (start slowly, exercising detoxes the body which first can create more of your problems for a few days, as waste is released in the body and congests your body further. You may want to find a lymph drainage therapist in your area or try a medium Swedish massage, no heavy massage work for a while it creates more cellular waste. I would also find a chiropractor whose health philosophy fits yours. Good Luck

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Permalink Reply by Richard Staab on November 12, 2009 at 9:33am

Although I personally do not suffer the physical effects of dystonia I have two children that do and a third that we do not know about yet. They have the Dyt1 gene and severe generalized dystonia. I started a foundation to find a cure called Tyler's Hope for a Dystonia Cure and would encourage you to register with the patient registry at http://www.dipregistry.com/ when you can. We will need to be able to participate in clinical trials as we find pharmacueticals and other treatments. We will also have a dystonia cruise the end of July 2010 if you are interested in meeting others that suffer with dystonia , their families and some great doctors that will educate us and answer questions.

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