Boycie Posted October 28, 2012 Report Share Posted October 28, 2012 Hi, This is my first post so thank you to anyone for taking the time to read and to anyone who chooses to reply, I am a 38yr old male from the UK with tourettes and possible Adult ADHD, I am very envious of the knowledge you guys seem to have and pass around, plus the open mindedness to other triggers/causes etc shown by some of your medical professionals, I think we are sadly still quite a bit behind you in the UK. Anyway, to my question. My tics seem to be getting worse as I get older and this has resulted in me having to take time off from work. My specialist has prescribed me Topiramate and I am up to 125mg per day at the moment with no real noticeable benefit from this drug and the possibility of a surgical procedure has been suggested. I have put a lot of weight on in the last couple of years and had decided to try a lo-carb diet to try and shift the bulk of it relatively quickly. I have only been on this lo-carb diet for 2 weeks and have noticed a considerable improvement in my tics, from reading other posts on these forums, could it be because I am eliminating sugar/gluten and some dairy whilst on this diet? I was wondering how long it takes to see the full effects/benefits of removing gluten/dairy from your diet with respect to tourettes (assuming gluten/dairy is a trigger), also this diet still permits me to eat cheese and cream so I guess from a dairy perspective I should be trying to remove these as well? I am finding the diet a bit of a trial to stick to already because of the limited food choices - but I am not willing to give up the sustained improvements I have seen in my tics. Grateful for any advice anyone can give Thanks Stuart. Link to comment Share on other sites More sharing options...
rowingmom Posted October 29, 2012 Report Share Posted October 29, 2012 (edited) I am finding the diet a bit of a trial to stick to already because of the limited food choices - but I am not willing to give up the sustained improvements I have seen in my tics. A couple of great websites are Mark's Daily Apple and Robb Wolf's Paleo Diet. A good search engine for paleo recipes is Chowstalker. Low carb GF/CF isn't really limiting, although you need to change your perception of what real food is. Good for you for discovering how to improve your health. Edited October 29, 2012 by rowingmom Link to comment Share on other sites More sharing options...
Chemar Posted October 29, 2012 Report Share Posted October 29, 2012 Hi for some great GFCF recipe idea you could try http://healthy-family.org What type of surgery is your doctor suggesting? Link to comment Share on other sites More sharing options...
Boycie Posted October 30, 2012 Author Report Share Posted October 30, 2012 Hi for some great GFCF recipe idea you could try http://healthy-family.org What type of surgery is your doctor suggesting? He is putting me forward to be considered for a trial of Deep Brain Stimulation here in the UK, it is an option that obviously scares me quite a bit but the impact that my tics are having now on every part of my life and the way they affect my home life with my wife , kids, work etc I am starting to feel that these are the options I have to consider. Thanks for the website address and thanks to you to RowingMom , i'll have a look. Link to comment Share on other sites More sharing options...
guy123 Posted November 1, 2012 Report Share Posted November 1, 2012 (edited) Before considering surgery, if Topiramate doesn't work for you, you may want to give Clonidine a try. Of the drugs that have been tested on tics, it has one of the most mild side effect profiles for most people, with the most common being drowsiness, dizziness if you stand up too fast, and libido. It works well for me and I take a tiny dose of it. I have found that the Clonidine made by Actavis has significantly less intense side effects than the Clonidine made by Mylan. The Mylan stuff made me super drowsy, gave me headaches and reduced my libido by quite a bit. The Actavis stuff has barely any noticeable side effects at all. I spoke to a pharmacist about this who told me I wasn't the first person to bring this up to her (regarding different brands of the same drug having different side effects). I'm in the US, though; I'm not sure what manufacturers you have in the UK. If that doesn't work, marijuana has also been effective in some studies (not sure what the legal status is in the UK), and there is also Marinol (prescription pill form of marijuana). Following those, there are few that don't have potentially severe side effects, including tardive dyskinesia (a potentially permanent movement disorder) and sudden death. Here is a list of all known drugs that have been tested on tics sorted by type: http://www.tourettestreatment.com/list-of-treatments.php Regarding Deep Brain Stimulation, I saw a guy on TV a few years ago who had that for his Tourettes, and the results were remarkable. Edited November 1, 2012 by guy123 Link to comment Share on other sites More sharing options...
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