Anyone know anything about it?. Any one you ever knew?.
 
I have been suffering from this from past many years.
 
This is one torturous attack. From coupe of months it has increased in intensity too.
 
Tongue comes out and is hard and starts hurting, stretched jaw to the point where it starts hurting, neck stiffens and head looks up and eyes also start looking up.
 
Because of all the neck thing (stiffens up) it becomes hard to breath. This started happening from the December attack. Happened in Jan and just happened yesterday too. 
 
When I cant breath then the vomit reflex kicks in and If I have anything inside, all comes out. The torture is immense and the best solution is intravenous sedative. Dormicum, Nalbine etc.
 
I have been reading about taking Dormicum intramuscularly because going from home to an emergency takes a long time and not every hospital welcomes patients like me. I have a minute or two before the attack takes its full shape and in that mean time I am looking to inject myself.
 
Edit [04/12/2016]: I decided against it a long time ago (when I started injecting). You get no warnings and when the attack happens, it happens. No time to wait so intravenous is the only way as I need instant relief from this illness/attack. 2mg to max 4mg. 3mg is what I prefer.
 
I think I have to live my remaining life with this attack/disease.
 
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I think this is pretty much it. Paroxysmal dystonia.
 
http://www.dystonia.org.uk/index.php/about-dystonia/types-of-dystonia/paroxysmal-dystonia
 

Paroxysmal dystonia can be a challenging condition to live with. The attacks can be unpredictable, and interrupt everyday life. This is a rare condition, and therefore most people, including some doctors, will not have heard of it. Some people may confuse paroxysmal dystonia with epilepsy.

 

This website has information and the Mayo Clinic is highly rated for medical care.
 
"Each year, Mayo Clinic specialists treat more than 1,000 people with dystonia"
 
http://www.mayoclinic.org/diseases-conditions/dystonia/dystonia-care-at-mayo-clinic/ovc-20163833
 
http://www.mayoclinic.org...treatment/txc-20163708
 
 
Maybe your local Dr. can consult with them ?
 
 

Tweaked
That sounds truly awful.  I hope that you find some relief.  I'll keep you in my prayers.

It is more than awful bro.
 

knightsilver
Get outdoors more. Just keep trying diff docs till till find the right ones. Those 4 walls can sneak up on you real quick.....
 
 
My better half just had a tumor removed a week ago today, she's stable but still in recovery. Dealing with your own health problems ontop being a caregiver spouse has fin taught'en me, you cant do it alone, your not Superman. And having a close support system/people is just a better way to get through the rough times....
 
Just do you homework, but let the doctors do their jobs and be the doctors....

I hope I have a tumor or something. This has no chance of ever healing as far I have read and I have read alot. This site, that site. Everywhere.
 
My general physician said to me that this is the first time he has seen this case and in me.

An intramuscular injection would take longer to react but its effects would last longer from my limited understanding. I wonder if it is an exceptable treatment to regularly perform an intramuscular injection as a preventative measure. It would always be in your bloodstream thereby always be there to help with the symptoms.

Zuhl3156
I wonder if it is an exceptable treatment to regularly perform an intramuscular injection as a preventative measure.

 
What do you mean by this?.

Cool GTX
You need to talk with a Doctor for medical advise.

Cant afford it. Sorry.
 
Plus a neurologist wont really be able help me at all because AFAIK, this "situation" cant be terminated and who knows what kind of doctor will I find?. The one that looks at you like a lamb to slaughter or a human being who really needs help?.

It isn't like I am having an attack daily. Recently, it has been every month.
 
Now, who and where are our resident doctors/nurses?. :p

OK, so November started and started having attacks again. 2 or 3 in November. I actually remember I was suffering from the same thing last November. This is all very weird.
 
Had one yesterday (3rd December). Not good.
 
Oh and OP updated with this link and [04/12/2016].
 
http://www.dystonia.org.u...ia/paroxysmal-dystonia
 
I also welcome myself back on the forum after many, many months.

Try dealing with MS.....

rjohnson11
So I can understand your pain and frustration.

It is sad that you can understand my pain and frustration and my FATHER cant.
 
My life is finished in my head. Somehow I am not normally depressed when in reality I should be crying my eyes out from hopelessness and this is just with this Paroxysmal Dystonia. People suffer from worse forms. I just have the easiest one which may not come up for months but one day out of a sudden will show up.
 
 
 
 
Read this for example:
 
http://brainfoundation.org.au/disorders/dystonia
 

Dystonia can be a lonely and depressing condition. Outward symptoms can be a source of great embarrassment and frustration for the sufferer. The fact that there is no known cure for dystonia often adds to this distress. Many suffer personal problems resulting from changes to their body image. Self‑esteem often lowers as individuals lose confidence in themselves and their ability to function as a normal human being. Some people are concerned about how the dystonia will affect their financial position, their normal routine and basic enjoyment of life. These issues are often made worse because so little is known about the disorder.