I suffer from 2 severe diseases. The one that reared it's ugly head the first has brought me to the brink of death multiple times. The first time I was only 5 years old. I always carry (hopefully) life saving medication with me "just in case". This disease adds the adventure to my life. If something goes wrong it may be a matter of minutes and needing somebody (preferably James Bond) with you who will react instantly, without hesitation.

Although you'd expect differently this disease is not the one that inhibits my quality of life the most. No it's a muscle disease named generalized dystonia which greatly affects my quality of life. The spasm attacks are extremely painful. There's pain which goes way above and beyond the capability of normal painkillers. The treatment consists of heavy medication which turns me into a zombie, too spaced out to notice it much but the pain is still there. I absolutely hate it! There have been days it was so bad I'd actually beg to have somebody put me out of my mysery but I also more than once chose to suffer instead of taking medication.

My neurologist tried to find medication which helped. Since generalized dystonia is rare and there's really not sufficient knowledge about it, there's no real treatment. Only a list of medication to be tested. I pretty much became a lab rat. Lets try this medication for a few months, lets try another. Your brains are basically a very complicated chemistry set. Each medication fiddles with the chemistry and changes the way my brain sends signals to my muscles.
The side effects were a nightmare to me. I started showing signs of dementia. I couldn't remember my phone number and last name. I started being worried I wouldn't be able to find my way home. One day I came home after 3 hours of grocery shopping. High flames were coming out of my gas burner because I had forgotten to turn it off. I wasn't able to study anymore because the medication gave me double vision. In order for me to be able to lead a normal life my neurologist agreed it was better to stop the experiments. Not taking the medication anymore doesn't mean everything is back to normal. No, it takes your brains months to restore to it's natural chemistry. There are other options to "fix" generalized dystonia. I'm very iffy about all the "solutions" they have because in the history of medicine there have been so many treatments that have turned out to be harmful later.

I also had the option of brain surgery. Luckily my neurologist discussed it with me and we agreed it wasn't a good idea. He knew I'm a smart cookie and felt the risk damaging my brain was too high. I was in the midst of my computer science studies and brain surgery was the absolutely last thing I wanted to try.

There's one story I'd like to share here. It's about a woman who had morphine as a painkiller. She told me she had to take more and more to keep the pain under control. That made all my alarm bells go off but not to her or her doctor. Morphine actually kills good cells. That's why it's used for euthanasia, in a high enough dosage it kills you. She was popping morphine pills as if they were candy. Finally they discovered she had cancer. I've always wondered if they could have diagnosed it earlier, if they had taken notice of her increasing pain and her various other classic cancer symptoms. She had the symptoms for a whole year. It's never a bad idea to second guess your regular pain management.

In a nutshell that's why I ventured beyond the world of chemical drugs and developed lots of tricks over the years. My information came from everywhere. Partly learning to listen to your body telling you how it functions. Partly tips from doctors, patients and information from many forums across the world. On this page I want to share all my tricks because I've never come across a forum which had them all in one place. They are not all purely for people suffering from generalized dystonia or other muscle diseases. Some of them can be used for other ailments.
This will be a work in progresss!

Pain starts between your ears Not everybody has the same pain threshold when it comes to tolerating pain but there's a way to deal with it. Give it a place in your life. I use good memories to go to a place where it's easier to deal with pain. I guess it's a form of self-hypnosis or meditation which I've developed over the years and I use my photos to concentrate on. When I was 12 years old I got a photo camera for my birthday. Since then photos have played an important part in my life. I have a photo book with lots of signed photos of actors which is part of my painkiller management. It brings back vivid memories of my meetings which take my mind of the pain. When I'm afraid to go to sleep I usually end up watching a movie too. Lord of the Rings and Phantom of the Opera are my favorites when that happens.

Q10 this food supplement helped me a lot when I was in a downward pain spiral that I couldn't get out of. It was actually advised by my neurologist who had heard at conventions of other generalized dystonia patients having good results with it. Q10 is a miracle treatment for the blood vessels. It's of high value to keep the blood vessels in your brain in good condition. It makes the blood vessels smooth and supple again. It removes plaque. That's critical to dystonia patients but also for Parkinsons, dementia, Alzheimer etc. I've read miracle stories from heart patients. It's proven to fix heart issues to the point of heart surgeries being cancelled. Heart specialists are actually prescribing it to their patients.

Start easy with 30mg because it can cause dizzyness above 60 mg. I use Japanese Q10 of 200mg. I regularly stop for a while because it tends to work better when you give it a break sometimes.

Chiroplexan by the brand Dr. Pfluger this is my absolute favorite homeopathic medication. I've had back problems since childhood. A chiropracter gave me the advise saying it contains all the nutrition your spine needs. It's a great painkiller and makes your back stronger.

I've passed the advice on to a street worker. He had layed brick roads all his life and his back was irreparably damaged from all the hard work. Of course he had no faith in it and didn't believe in it. Men rarely do and always feel they need to make that very clear. You don't need to believe in remedies to give it a try. He was so desperate from the pain he would give it a try. Within days his wife called me all excited because he could sleep properly again. The pain was much less within a week.
I've also given it to my tiny dog which got a bad hernia that paralyzed her. She was too small to operate on. The risk of hitting a nerve and causing permanent paralysis was too high. I gave it to her every time the problem popped up and stopped after a week or so, when she was pain free. It came back less and less frequent.

Arnica X6 (D6) is a basic homeopathic remedy. Depending on whatever country you're in the strength is either X6 or D6. I bruise myself regularly. Arnica is a great painkiller and will remove the bruise much quicker as without taking arnica. Don't wait, the sooner you take it the quicker it heals. In bad cases take it every 10 minutes until the pain gets less. That's usually in the first 2 hours after an injury. I always apply Arnica creme too. Arnica, Ruta and Rhus are known as the golden triangle when it comes to injuries. When you've trained too hard you've basically bruised yourself. When you're aching this golden triangle will also heal the damage that was caused by too much training.

Ruta X6 (D6) when the bruise also includes a muscle Ruta will heal it quicker. Calm the muscle and take muscle pain away.

Rhus Toxicondendron X6 (D6) with bruising a muscle comes swelling. This swelling tends to show signs of (rheumatic) inflammation. Rhus will keep the inflammation and swelling down.

Conium Maculatum X6 (D6) is also a homeopathic remedy I stumbled upon by accident. While taking it for other symptoms I started noticing how it affected my generalized dystonia. Back then I had the typical dystonia tremor. Vibrations in my muscles all day and night long. It's extremely exhausting trembling all day long and keeps you from sleeping at night. My body would need hours quiet time in bed before it relaxed enough so I could fall asleep. When I started investigating this remedy in my old homeopathic books I saw the description "degeneration of the spine and brain" and decided to test it further. It has taken me many years but today I only have tremors when my dystonia is in a bad phase or stressed due to illness such as the flue.

I was extremely sensitive to the dosage. Although a normal dosage is 10 drops, 3 times a day, I could get nowhere near that. Only 5 drops a day would increase my painful spasms but 2-3 drops a day made the spasms calm down. I started out at 1 drop a day. Normally you take drops in no more as a spoonful of water. However when the reaction is too heavy put 1 drop in a glas of water and take sips throughout the whole day. Carefully increase the drops over weeks, rather as days.

The biggest mistake people make when they start with homeopathic remedies is continuing taking it, even when the symptoms get worse. You should immediately STOP and give your body a little time to get rid of basically an overdose. Usually that takes a few days. Then carefully start with a smaller dosage.