idebenone?

Does anyone take idebenone and at what dose, do they feel any improvements? I am thinking of asking my neurologist at my next appointment about taking it and would like to have some knowledge about others taking the drug first as it is not available through the nhs it is not something he/she? [two of them and I don't know witch it will be with] would automatically think of

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  • Hi John

    Idebenone is not licensed in Britain. I know it is licensed in Canada. It can give rise to improvements to heart problems in people with Friedreich's Ataxia but results on balance and co-ordination have been inconsistent.

    Idebenone is a synthetic form of CoEnzyme Q10 which you may of heard of and is available to buy over the counter in Britain. Co Enzyme Q10 naturally occurs in our body so is safe to take and doesn't have any side effects. Some people swear by it and, anecdotally, it can help with energy levels and slurred speech. With others it has no effect at all. Unfortunately there is no test to tell you whether or not you will feel a benefit of it. I took it for about 6 months (I had to buy it) but did not experience any benefit with it. However I was doing a very stressful and job at the time and now things have calmed down, I may give it another go.

    I really don't know about dose. From speaking to others, the dose which people find helpful is variable so is something definitely worth talking about with your neurologist.

    Harriet

  • Hello "john",.

    you forgot to tag your question.

    Is it ok by you if our Admins, Harry, tagged it ?

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