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Nicotine to help movement disorder (tardive dyskinesia)

Posted , 6 users are following.

NooNooHead1981
NooNooHead1981

Hi there

I have a unfortunate situation in that I've got the drug induced movement disorder tardive dyskinesia... Lucky me..!

Does anyone know whether nicotine can help with reducing movements? I'm not a smoker but have considered using nicotine patches or gum, or even trying vaping if it helped at all. I don't want to get addicted obviously, but anything beats the stupid embarrassing lip smacking and tongue protrusion I have to deal with on a daily basis. (It sucks big time...)

I might ask my doctor about nicotine and see what he says. My neurologist and psychaiatrist both don't recommend any meds as my TD is quite mild, but even 'mild' is bloody crap, to be honest. 🙄😩😥

0 likes, 16 replies

16 Replies

  • megan51936
    megan51936 NooNooHead1981

    Posted

    Can I ask what your symptoms are daily and how frequently you get them? I am trying to come off 20mg of Latuda and am having a difficult time. I am currently on 5mg. I have started having body jerks, toe twitches, and face grimaces. It seems to happen during the mornings or at night. I'm really afraid to come off the Latuda completely and feel like my symptoms will just get worse. I live in Orange County, California-the most superficial place to live. I don't know how I will deal with this. I'm 32 single and feel very much alone. I've been on Latuda for almost a year. Any words or encouragement or advice would be greatly appreciated.

    • NooNooHead1981
      NooNooHead1981 megan51936

      Posted

      Hi Megan

      I'm so sorry to hear you're having these symptoms. It sucks... I can completely empathise.

      My movements started after only a WEEK on Pericyazine (1st-gen anti-psychotic). It started with grimacing and then a month later progressed onto tongue movements, toe twitches, lip smacking/pursing and other tic-like movements and now has become rather Tourette's like and is more tongue protrusion occasionally, alongside some random arm movements that look like I'm waving at people!

      This doesn't help that all of these are on top of some cognitive symptoms etc that I have from a mild Traumatic Brain Injury last year, and for which I was prescribed the anti-psychotic for (for severe anxiety and post-concussion syndrome).

      I'm guessing if you're coming off the Latuda it will 'unmask' your symtoms completely, although they could be 'withdrawal' movements/TD and could go away. However, not wanting to scare you, but if you've been on Latuda for a year, there is a chance your symptoms could become more severe. Mine are 'mild' after just one week of taking Pericyazine... I'm guessing if I'd taken them for longer, I'd be an absolute mess.

      I hate anti-psychotics - they are absolute poison and should be banned. :-(

    • megan51936
      megan51936 NooNooHead1981

      Posted

      Hi Nikki:

      Thank you for your prompt response. I am just a basketcase because of this. I was never told of the possible TD side effect. I should have done my research but I was in such a low depression she could have offered me monkey oil and I probably would have taken it. It's hard not to blame myself.

      I'm going to see a neurologist on Monday.

      Are you able to work? I hope I'm able to as that's the only way I'll keep my insurance. I don't know how I'll get by. I really feel like my life is over all because I took this drug.

    • NooNooHead1981
      NooNooHead1981 megan51936

      Posted

      I'm sure the neurologist will help you in any way he can. I had to see three different ones before my diagnosis. I've been referred to the leading movement disorder expert on basal ganglia and dyskinesias who works at Addenbrooke's hospital and Cambridge University (in the UK) so hopefully he will give me some good advice. He may also test me for any other genetic disorders to rule anything else with similar symptoms out.

      I didn't ever get any advice about side effects and was even told not to look them up. I'm so angry at my GP that I even considered suing her... I wasn't in a position or fit state of mind to look up the potential side effects when she prescribed them to me in Nov last year, but believe me, I've had a good nine months to do some research now!

      To say that I'm angry and embarrassed is a bloody understatement. Depressed and angry is something that I have to get used to feeling these days... ????

    • NooNooHead1981
      NooNooHead1981 megan51936

      Posted

      Your life isn't over at all... Keep positive your symptoms will be ok and possibly get better. It's all I can do to not stop myself to jumping out of a window at times ??

      My neuro says it may be 3-5 yrs that my symptoms will settle down but I'm hoping it will be sooner... ????

    • megan51936
      megan51936 NooNooHead1981

      Posted

      Hi Nikki:

      I pray you get some answers and relief.

      I'm still not off the drug...I'm so scared to get off. I'm in a weird in between place. It's absolute hell. I just hope someone can help me get off of it. But part of me doesn't want to get off of it.

    • NooNooHead1981
      NooNooHead1981 megan51936

      Posted

      Hi Megan

      Thank you so much for your kind words and reply. How ar you getting on? I agree that drug withdrawal is hell - it's especially bad if you don't do it slowly and taper off (I didn't, and felt like my body had separated from my head and legs...!)

      TD is annoying and a real pain and I only wish these damn things didn't exist. Any time you need any support, just message me. :-)

      xx

    • desert_prencess
      desert_prencess NooNooHead1981

      Posted

      I understand your frustration. My mother had the same ticks but hers came from a medication called Reglin. Its a medication that helps digest the food faster. Its also used for migrains. My daughters doctor put her on it against my better judgement and by day 2 I saw signs and stopped after only 2 doses. ( thankfully no after afects)

       I know its easy to blame anti psycotic meds and wanting to never take them is understandable. BUT believe me when I say they are not all going to have side effects that will do you such harm. Its arisk we take when taking ANY medication. 

      examples 

      Zyprexa- Mood stablizer- made my daughter gain 50bs in a month. horrible for her.

      Topamax- used as a mood stabalizer and for migrains. _ gave me pancreatitis. 5 days in the hospital with no food or water or anything to put in my mouth. Just had I.V. fluids . couldnt even rince my mouth out. and months of recovery before being able to tolerate normal foods. 

      Many anti depressants can cause certain people to become suicidal. 

      My point is if you research every medication out there you will see that each one CAN cause some major health problems including death.  

      Doctors have to  decide if the POSSIBLE side affect outways the possibility of a cure. Usually the odds are of sevier side effects are very low compared to the odds of the medication working. 

      It sucks and I am so sorry you are going through this. 

      just a suggestion mybe asking your doctor for a low dose antisiezure medicine like dilantin or tegratol might cure those tics. 

      My theory is this. Siezures are when a part of the brain fires when it isnt suppose to . There are thousands of different kinds of seizures. It requires a firing in the brain section to make your body move. when the firing stops so does your movement. Antisiezure meds keep the brain from firing when it shouldnt. BUT uderstand that antisiezure meds CAN have side efect too.  but so can asperin and tylenol.  good luck I really hope this gives you a better perspective and a little hope.

       

    • desert_prencess
      desert_prencess

      Posted

      Sorry for the typos I get going and forget to make sure I spelled things right or my sentences are worded correctly . Note to self...... Slow down!
  • megan51936
    megan51936 NooNooHead1981

    Posted

    Thank you so much. I was just let go from my job last week so I'm dealing with that on top of everything else. Anyway we can exchange emails or will it be deleted by a moderator? Thanks for reaching out I feel so alone.

  • Nicoman
    Nicoman NooNooHead1981

    Posted

    I was diagnosed with stage three Parkinson's three years ago with just about every symptom from tremors to feet stuck to the floor to name a few. I take 25mg l-dopa three times a day and wear a 21mg nicotine patch. When the patch starts to wear off I chew 2mg nicotine gum when needed. All my symptoms are under control except a dragging left foot. Google nicotine Parkinson's and get informed.

  • Nicoman
    Nicoman NooNooHead1981

    Posted

    I was diagnosed with stage III Parkinson's three years ago. I'm 73 years old and had all the classic symptoms. Feet stuck to the floor tremors in my lip and both arms i even had drooling. I had painful cramps in both forearms. I couldn't turn over in bed. I could get in and out of the chair. For the last year I've been taking l-dopa and using a 21 mg nicotine patch daily. I switch back-and-forth between arms. Almost all my symptoms are gone. When the patch starts to wear off I chew a piece of 2 mg nicotine gum. Not only does nicotine stop my symptoms but it's also Nuro protective. I've been told it should never be used alone without l-dopa. You might want to pop a 2 mg Piece of gum in your mouth and see how you react. But first you should always talk to your doctor.

  • Nicoman
    Nicoman NooNooHead1981

    Posted

    PS I'm the 73 year old guy using a nicotine patch. I understand the social stigma of Parkinson's. I live in West Hollywood.

  • ben12s
    ben12s NooNooHead1981

    Posted

    Hello Nikki27791 and All.

    Just stumbled across this page while doing some research/reading and looking for any help possible for my Mother who has suffered from TD for around 5 years now.

    Desperately sorry to hear of each and every one of your struggles, it really is such a horrific and completely avoidable illness - if doctors bothered to warn you before prescribing these life-ruining drugs.

    Out of interest, how many of you are based in the UK? I haven't come across another sufferer in the UK (or England) before so to discover this page is quite a welcome surprise in a way, as we thought we were alone.

    Strength to you all, keep fighting!

    • NooNooHead1981
      NooNooHead1981 ben12s

      Posted

      Hi Ben

      Thank you very much for your kind words and support, and so sorry to hear of your mother and her TD. It is SO awful and avoidable, and I was totally not warned at all - in fact, I was told not to look up the side effects!

      I am in the UK too (East Anglia) and find my symptoms manageable. I was prescribed just a week's worth (!!!) of first generation anti-psychotic after a head injury, post concussion syndrome and a terrible breakdown - after my GP had tried practially every other psychotropic drug going. I know doctors only try their best to help, but one out of the five neurologists I have seen said I was probably predisposed to getting it and should never have been given the drugs given my medical history and head injury.

      My psychaitrist said that I was just 'bloody, bloody unlucky'! Great...! I've also seen the leading TD expert in London who didn't have much advice apart from telling me to try botox or therapy for tics, which is not much use to be honest! As I type, I am trying not to grimace too much or lip smack a lot. :-(

      I have a friend who also lives in the UK who has a more severe form of TD: she has tardive dystonia which is more muscle spasms and contractions rather than the 'classic' oral buccal lingual TD like mine/ She is a great source of support and such an inspiration. I really admire her spirit and ability to keep going - something that I find very hard to do at times! :-(

      Please feel free to PM me at any point - I'd love to message you about TD and see if I can help. :-)

      Stay strong too.

      x

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