tegretol retard

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hi ive recently been diagnosed with hfs and the hospital are in the process of writing to my doc to prescribe me with tegrewtol retard. has anyone experienced taking this and would be gratefull to share your experiences ie did it work were there any side effects. ive looked into it on a web site and it was a bit worrying to read that one of the side effects are feelings of suicide or self harming. please can someone help me out with this as its good to hear fromm ppl who have used this..... cheers anita

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  • Posted

    Hi Anita,

    I am a 51years young male, I have had hfs for 3 years now, getting Botox for most of it, 14 injections on my last trip to the hospital, which included 9 in my neck, this was the most I have had in one session.

    I cautiously say, this visit has been the best of the 3 past years,I'm hoping, my 'spasticity Doc, has managed 'at last' to find the right 'sites' to inject, and giving me some relief, and he is also wanting me back in 2 months, rather than 3, as 3 months is too long if the jags are not giving you relief.

    So, I think, you should consider, sticking with botox, insist on a neuroligist administering them, if not, a doctor who's speciality is spasticity..not heard of the drug you mentioned, but sound like I would run a mile from them..stick to the Botox my friend, good luck, keep me posted please.. : :P

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  • Posted

    [quote:7c3d9a5fca=\"anitaesmith1961 \"]hi ive recently been diagnosed with hfs and the hospital are in the process of writing to my doc to prescribe me with tegrewtol retard. has anyone experienced taking this and would be gratefull to share your experiences ie did it work were there any side effects. ive looked into it on a web site and it was a bit worrying to read that one of the side effects are feelings of suicide or self harming. please can someone help me out with this as its good to hear fromm ppl who have used this..... cheers anita[/quote:7c3d9a5fca]

    hi, ive tried this treatment but it wasnt very affective in my case as i noticed no changes in the pattern of my hemifacial spasms (but thats just me) the drug is designed to relax the muscle in the body, in our case the face, as for the side affects i wouldnt worry that much, all drugs state common side affects.... i am now taking CLONAZEPAM to which ive noticed a slight difference in dealing with the spasms....the drugs are only always going to be a tempory fix (no cure) FACT...if its getting to you really badly surgery is the only option. im in the process of talking to a surgeon now if you need anymore infomation id be glad to try and help..good luck and all the best

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  • Posted

    Just had my 14 shots of Botox today, and this new amount of Botox has helped, used to get 4/5.

    I have found out that if you get a good doctor who knows what this problem is about, the better the treatment is administered.

    As for the mvd operation, my opinion is, why let someone go inside your head,with the possible chance of leaving you with a twisted face, deafness, or much worse ? not in your life, stick with the Botox, demand more ! make sure it is a doctor who does specialise in this treatment.

    I have been receiving Botox injections now for over 3 years, and finally, fingers crossed, it is giving me huge relief, having found the correct dosage and doctor.

    Good luck, trust the Botox and NOT the operation, too dodgy for me, not worth it, and it is not always a success. : :D

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  • Posted

    Hi Anita,

    I do not know if it is the same medication, but I have HFS and was treated with Tegretol and few months ago. The spasms seemed to slow down but then I found weather I used it or not the spasms are more or less the same.  I have now learned to live with it and I feel good sleeping on the left side. I also usually drop my jaw.  My neurologist has suggested botox but very adamant about MVD.

    I have never met anyone with my condition where I come from so feel very much alone.

     

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