stephenStephen's story

Stephen shares his story about living with essential tremor.

My tremors started in adolescence, and I as a child adopted a hide and manage strategy, literally from everybody including my immediate family, until I was 40 years old.  This caused an extreme embarrassment syndrome creating an upward spiral of anxiety. Though not that I was aware of what I was doing to myself. With increasing anxiety this generated overtime even more enhanced tremor, resulting in more anxiety/ panic and even more enhanced tremor. The tremor evolved into other parts of body including sudden muscle spasm caused by panic. At approx. age 40 this all became unmanageable, so I went reluctantly to see the doctor, the diagnosis was essential tremor.

In summary, the upward spiral of anxiety and resultant tremor had become out of control, one fuelling the other. To break the spiral one way was to remove the anxiety/ panic which the theory was over time would reduce the tremor to more manageable levels. ALL body system (nervous or physical) slowing medications which directly calm the tremor and body resulted in slight to severe depression and all become ineffective overtime. This included all the drugs recommended for tremor from Propranolol to Diazepam, I tried them all. The one that worked the best was Diazepam in a therapeutic dose of 2mg Tid. This drug lasted the longest and was immediately effective, however long term, its effect wears off and in me it resulted in depression and I never wish to increase the dose, and will withdraw from it at some point. It also has some other mild side effects.

The light at the end of the tunnel has only been Antidepressant medication which was used to break the anxiety/ panic cycle and can be safely taken long term. However, warning from previous experience coming off the medication causes depressive thoughts and the tremors reverse back to what they were before or are worse for a short while. Venlafaxine (an SNRI) was prescribed at age 40 (20 years ago) for 18 months, was at the time the only AD offered, was the most successful drug I took, and calmed the muscle spasms without causing depression. It took a long time and patience was totally necessary. At the end of the course I was stable, the muscle spasms had disappeared, but at the time the drug wasn't approved for long term use so I had to come off it, but today it is now approved. It made life more pleasant even with any remaining tremor and by reducing the anxiety about the tremor, that in itself reduced the tremor.

Some doctors won't prescribe ADs for tremor because initially they say they cause tremor, however if the bulk of the tremor is caused by anxiety/ panic spiralling by the tremor, this for me was a good trial. There were mild side effects mainly some excitability even on the low dose of SNRI and withdrawal was a slight issue. There was nothing unpleasant about the ADs. The current SSRI's now prescribed seems very very tolerable and needs time to work. Initially the tremor gets worse as you adjust to the drug over about 12 weeks. The reduction in anxiety takes a while longer to reducing the original tremor as the brain needs to get used to the reduction in anxiety and rewrites its thought pattern. The drug continued improving the tremor without dose increase right through the course of treatment.

The main thing is that all the essential tremor drugs recommended can cause depressive symptoms and "poop out" whereas the ADs only cause feelings of wellbeing and strength and you feel better in yourself ultimately that helps life be more tolerable even with a tremor. At least you can smile again and not dwell on this difficult condition. Live life to the full and at the same time it's possible if your tremor is fuelled by anxiety that it will help enormously.

My experience only but may be an option worth trying for some people where all else has failed. Hope it helps someone but check out what your doctor thinks. I know you can take it in combination with some of the other medications also.

If you have been affected by any of the issues mentioned in this story or want to share your story, please get in touch on enquiries@tremor.org.uk.

The NTF is sharing this article for information purposes only; it does not represent the NTF's views and is not an endorsement by the NTF of any particular treatments, therapies or products.