I tried Gabapentin and it made me feel spaced out so I stopped taking it. I find the only drug that helps is Mirtazapine, 60mg. It doesn’t stop the involuntary movements but it takes the edge off of them!
I was offered a place in the Lishman Unit, Maudsley Hospital, London, for 12-weeks of intensive therapy but I have heard bad reports of the hospital so I am not currently actively pursuing it.
I am currently waiting to be seen at Queens Hospital, London, who also offers intensive therapy. In the meantime I have told my GP, and the hospitals, that I will not see any medic for the next 6-months as I find visiting them makes me worse.
All the ‘experts’ tell me the condition is caused by your brain deciding that it will tackle a past traumatic experience. To do this it shuts down a part of the brain. Unfortunately, the part of the brain shut down doesn’t restart! This causes the brain to have problems with sending and receiving messages. This is what causes the involuntary movements.
To cope I try to keep busy; I bought a classic car and am in the process of doing it up.
As the brain can only process one thought or task at a time, even for women, playing with the car works as a distraction and the movements stop while I concentrate on what I am doing. But as soon as I stop, even to change position or walk around the car, they start again.
Other times I deliberately try to keep busy to stop me thinking about it.
To me the key treatment/therapy is accepting the way you are and getting on with your life. Don’t let it get you down! Accept that you may be like it for a lengthy time and look for what helps to reduce the intensity of the involuntary movements.
Yes, we now have restrictions, e.g., I can get around the house and garage on my feet but when it comes to going for a walk or shopping I have to go in a wheel chair. Also, driving is restricted now, as I cannot drive in the dark and long distance driving is generally impossible; sometimes I cannot even drive locally! Also, I have to talk in short sentences and with rest breaks in between sentences or the involuntary movements go to a different level.
But if you look at when you are at your best and try to manipulate your life to centre around this scenario then the condition is ‘manageable’.
I found leading a quiet life, playing with my car, reading, watching movies, etc., and staying away from stressful scenarios helps.
I am lucky in a way that I took early retirement so I can lead a tranquil, well sort of, life. I joke about the movements; I refer to them as ‘dancing’! And as embarrassing as they might be when they happen in public I just shrug and get on with my life.
Finally, experience tells me that if you accept the condition and live as normal a life as possible, then with time the condition will be less intrusive and disruptive. The more you worry about what caused it and question whether it will it go away or not, the worse it gets. As hard as it is you have to accept that you will have good days and bad days and some really bad days but don’t let it upset you.
I hope this doesn’t sound patronising, as that is not my intent. I am just trying to tell you how I cope with what is a very disabling condition.
Good luck for the future.
James has said he is happy if anyone would like to get in contact with him, if anyone is interested just let me know through the contact form and I will send you hhis email infornation.