Tardive Dystonia

thank you for your reply. i have gotten botox in my neck. this last time they missed some muscles:( have to wait 3 months to do again. my paraspinals down my back are pulling my spine over cause the constant spasms and the hips are so bad. im not on any meds right now besides baclofen. the antinausea was given just 2 doses during a inpatient stay and been like this since:( i have tried getting the dr to give me the meds out there for tardive that deplete some dopamine as they say tardive types are over sensitive to dopamine but he said they make him nervous. first holidays that wont be so cheery. i just wish my kids were grown now they have to grow up with a ill mom who cant do much. so sorry to u as well it stinks anyone has to go through this. also lost my job that i loved.:_(

Hi Summer,

You're welcome.

That is a problem with BoTox and Neurologists, each one has their own way of injecting it. I'm under the President of Neurology in the UK, and his team, I prefer when he gives me the injections because he injects quickly and always the correct place. In my case where it is injected, I hear it being injected in a muscle behind the ear - it doesn't sound very nice and makes you want to swear at the consultants (I have never yet, but they do have some cases where they have been called certain names! Nothing I would repeat!).

The BoTox in my case must paralyze a certain number of muscles, but if one muscle is hit then I would have to be fed by a 'pipe' for 2 weeks, until I can swallow again.

Tardive Dystonia is normally caused by certain medication, have you looked into claiming against the people responsible?

There are many drugs to stop nausea, even I am on some because as the Dystonia spreads it causes my stomach muscles to spasm. But there is nothing no one can do to stop it completely, it would be nice to hear of a cure.

It Doctors, Consultants and Professors from the US to eventually diagnose me when I was young. At the time I was only the 7th known case in the UK, these days that figure has multiplied many thousands of times. There are many people that walk around thinking they are fine, but if they were tested they would know there are so many cases that even now are unknown.

You have probably heard of people saying they suffer from "Writer's Cramp", however, if you look it up in the British Medical Journal (BMJ) then you will see it has a medical term called "Hand Dystonia".

I can hardly write anything, my signature is different every-time.

My hips were affected initially, spine and left leg - but has it became worst I end up in a wheelchair, I tried for ages to be independent - you can only fight it for so long.

In many ways I was like yourself, I had a really good job, I loved it. I used to work 80 hours a week and think nothing of it. I never expected my life to change virtually overnight, but that is what happened.

I did get married and have three children, but they are all grown up now and all working, 2 boys and a daughter. We hit some hard patches but we pulled through them, I'm still in and out of hospitals even now - but I love my family. I have lost both of my parents over the years and even had cancer myself.

I take over 40 tablets a day, that's on a good day... more if I am having a bad day.

There is one thing I do look forward to though and that is my kids taking me to the cinema to watch a decent movie. Most Cineworld cinema's have Admission Boxes for disabled customers. These are rooms that are situated above the standard cinema seats, so you can see the entire screen and don't have to worry about people getting in your way.

Can you not ask your GP to refer you back to see a Neurology Consultant - Baclofen I found useless, they only tend to work with other tablets.

GP's are only taught to a certain level in health, I can chat to my doctor and completely lose her in brain terminology, only because I studied it. I can chat to my Neurologist on the same level and they understand exactly what I am referring too.

I have no confidence in my doctor whatsoever. She treated me for an infection for 6 weeks with antibiotics - that was the last straw.

I demanded she referred me to a Urologist for an Ultrasound scan for Testicular Cancer, she even said that was a bit drastic, but she did it there and then. Within a week I had the scan, 5 polyps were found and the testicle was removed and the biopsy came back positive. So, I was in remission for 7 years after that.

And people wonder why I don't like my own doctor!

Regards,

SteV3

Hi Summer,

You're welcome.

That is a problem with BoTox and Neurologists, each one has their own way of injecting it. I'm under the President of Neurology in the UK, and his team, I prefer when he gives me the injections because he injects quickly and always the correct place. In my case where it is injected, I hear it being injected in a muscle behind the ear - it doesn't sound very nice and makes you want to swear at the consultants (I have never yet, but they do have some cases where they have been called certain names! Nothing I would repeat!).

The BoTox in my case must paralyze a certain number of muscles, but if one muscle is hit then I would have to be fed by a 'pipe' for 2 weeks, until I can swallow again.

Tardive Dystonia is normally caused by certain medication, have you looked into claiming against the people responsible?

There are many drugs to stop nausea, even I am on some because as the Dystonia spreads it causes my stomach muscles to spasm. But there is nothing no one can do to stop it completely, it would be nice to hear of a cure.

It Doctors, Consultants and Professors from the US to eventually diagnose me when I was young. At the time I was only the 7th known case in the UK, these days that figure has multiplied many thousands of times. There are many people that walk around thinking they are fine, but if they were tested they would know there are so many cases that even now are unknown.

You have probably heard of people saying they suffer from "Writer's Cramp", however, if you look it up in the British Medical Journal (BMJ) then you will see it has a medical term called "Hand Dystonia".

I can hardly write anything, my signature is different every-time.

My hips were affected initially, spine and left leg - but has it became worst I end up in a wheelchair, I tried for ages to be independent - you can only fight it for so long.

In many ways I was like yourself, I had a really good job, I loved it. I used to work 80 hours a week and think nothing of it. I never expected my life to change virtually overnight, but that is what happened.

I did get married and have three children, but they are all grown up now and all working, 2 boys and a daughter. We hit some hard patches but we pulled through them, I'm still in and out of hospitals even now - but I love my family. I have lost both of my parents over the years and even had cancer myself.

I take over 40 tablets a day, that's on a good day... more if I am having a bad day.

There is one thing I do look forward to though and that is my kids taking me to the cinema to watch a decent movie. Most Cineworld cinema's have Admission Boxes for disabled customers. These are rooms that are situated above the standard cinema seats, so you can see the entire screen and don't have to worry about people getting in your way.

Can you not ask your GP to refer you back to see a Neurology Consultant - Baclofen I found useless, they only tend to work with other tablets.

GP's are only taught to a certain level in health, I can chat to my doctor and completely lose her in brain terminology, only because I studied it. I can chat to my Neurologist on the same level and they understand exactly what I am referring too.

I have no confidence in my doctor whatsoever. She treated me for an infection for 6 weeks with antibiotics - that was the last straw.

I demanded she referred me to a Urologist for an Ultrasound scan for Testicular Cancer, she even said that was a bit drastic, but she did it there and then. Within a week I had the scan, 5 polyps were found and the testicle was removed and the biopsy came back positive. So, I was in remission for 7 years after that.

And people wonder why I don't like my own doctor!

Regards,

SteV3

thank u. yes i do see a movement specialist in neurology. first time botox was great this time was a miss. will do again in 3 months. trying to get him to do my low back paraspinals he was nervous on those but did a little only 50 units he said next time maybe more i hope so. my biggest fear is kids resenting me cause we cant do much they are still young 9 and 14

Boy, I feel for you with little kids. I'm 68; I am also waiting for a larger dose of Botox --- seems my best hope.

Do watch what meds you are given; some cause or exascerbate dykinesia or dystoni!. You see some on TV ads: "may cause involuntary movements, which may be permanent."

I was just given Amitriptyline by my doctor; then I read the warnings from Walgreens: "Some people who take this drug may get very bad muscle problem called tardive dyskinsea. This problem may not go away even if this drug is stopped. The risk ....may be greater in people with diabetes and in older women. The risk is also greater the longer you take this drug or with higher doses....."

What were you taking ?

I do not what to rile you up, but doctors do get sued if he/she "caused" Dyskinea/Distonia. I chose not to do that.

How long have you had this. Kris

Summer, add-on : I stopped taking Amitrptyline immediately. Kris

i only take baclofen and been 7 months but because its all in spine and hips ive lost so much mobility. also my neck pulls back and right so bad

SteV3, I would like to know what you've learned: neurology, dystonia etc. I like your long responses. New doctor for me suggests something called -- neurogenic thoracic outlet syndrome. See, on top of worsening tardive diskinesia, daily neck and shoulder pain, unstoppable movement of my head (esp. if I've been up 4-5 hrs. i.e. not lying nearly flat)l my hands move all the time too, now my right arm aches all the time; like its been crushed. No doctor has paid attention to this latest ailment, until I was referred to a neurosurgeon, (because rheumatologist is convinced that problems come from cervical spine.)

So, do you know anything about neurogenic thoracic outlet syndrome NTOS?

How are you doing?

it was 2 i had 2 doses of compazine and one of reglan while in the hospital. my jaw hurt when there no one put together and spread fast. the meds themself had already been sued and had to list as a side effect not by me but nothing i can do now. my thing is hospital didn't say they were giving me this. i wanted to sue them for not telling me but they said it would be hard to prove. totally stinks.

Stinks ? ..... nice way to say that: like "Something smells in the state of Denmark>" ?

Personally, I did not know TD could get worse. If it is the original of my pain now, .... well, I can't hardly tolerate being in a car now. You didn't tell me how you are now.

worse everyday. will same areas neck down back to hips and jaw as qell but pain getting worse as my hips and spine pull

Hi Summer & Kris,

Sorry for the late reply... I was very close to the end off my last Botox injections wearing off, hence, I was in more pain than usual.

I had my BoTox Injections yesterday morning, yes they hurt when your muscle which is tort needs to be injected. The reason for this is due to the small needles they use and Botox is a thick clear liquid, most neurologist will massage the area after to make it feel better for you. However, over the years I have found different Neurologist administer Botox different ways - that may sound confusing (I will explain if you wish me too!).

When you have Botox initially, do not expect miracles, sometimes you do not benefit at all from them on the first session.

Put into a better perspective, Botox has a cooling off period and a working-up period and then there is the main period where they work properly.

Botulinum Toxin (BTX or BoTox) Use Period

Here is roughly how Botox works over a 10 week period.

|--- Injection takes 2 weeks to take effect.

|--- Botox should be helping you at this point.

|--- 8 weeks after the Botox Injection it will take another 2 weeks to be completely be out of your system.

So from this you can conclude that Botox is only at maximum strength for just 6 out of 10 weeks. Some Neurologists recommend you come back in 3 months which can be as long as 12 weeks or more, in the BMJ it is also stated at a 10 week interval. This interval really depends on the hospital you attend, I have mine every 10 weeks after I found out by researching the Botox use, and looking it up in several resources. Many Neurologists do not inform you that it can be administered every 10 weeks, which does make much more sense.

I am under the top neurologist team in the UK, which means my main consultant is The British President of Neurology, Dr. Geraint Fuller - If you want more information on him just Google is name, you'll find a few million results).

He is not just your average Neurologist Consultant, he also does seminars all across the UK, works from numerous hospitals including the main Neurology Hospital in Queen's Square, London. You can also find books he has wrote on Amazon, these cover Neurology and Dystonia. You'll find out much more by resourcing into the various Dystonia types.

People see me and think I suffer from Parkinson's Disease - of course they are wrong. Some medication that is used by Parkinson sufferers is prescribed to Dystonia patients, this is normal.

Amitriptyline does have a number of uses, yes there can be side-effects, however, you will find that these are few and far between. Kris you mentioned they could make you worse, this can only happen if you take over a certain high dosage.

I take Amitriptyline every night before bed, to higher my pain threshold and aid better sleep. They can be prescribed as antidepressants, pain relief or as help for sleeping. Their main use is as antidepressants, and the dose is much higher than what you would be prescribed for Dystonic involuntary movement disorders.

If either one of you need answers please just ask. The details I give you are resource checked, however, I am not a doctor and nor do I pretend to be. I have lived with this condition since the age of 22 years old to now (55 next month!).

Dystonia has no cure, it can only be controlled by prescribed medication. When I asked my GP 30 years ago if this condition was heriditary I was informed no, so my wife and I had 3 children. Since then science has proved it can be passed down to generations, this should be made aware in all Dystonia cases.

The only child of mine that suffers from "Writer's Cramp" is my 18 year old daughter, the medical term for this is "Hand Dystonia". She is lucky, she is a computer analyst, so she is entering data most off the time.

I hope this is of some help to either of you.

Regards,

SteV3.

STeV3 and Summer, I am shocked that you (summer) are not on medication! How can you stand it? Do you need a new doctor -- a neurologist? And STEV enjoyed long letter. How can this be inherited? Mine is Definitely caused by medication; the kind already known to cause dystonia in the old days -- on hospitalized psychiatric patients.

I am taking a lot of Gabapentin right now. It helps sometimes. Have either of you noticed that hydrocodone does not work on this kind of pain? I hardly ever take the stuff -- doesn't help.

My hope of course is Botox; I get a larger than 100 units dose in Dec. Yes, I know about the swallowing threat. Must have been horrible; think I'd lose my mind hospitalized like that.

My hand and arm hurt from this typing, so talk w/ you both later. Oh, I didn't mean others are uninvited to talk. sorry.