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Adverse reaction to the flu shot cervical dystonia, is there anyone out there with same experience

Posted , 5 users are following.

susan22615
susan22615

On October 29, 2004, I received the flu shot and the next day was extremely ill.  I lost my voice overnight, short term memory and my neck rested on my shoulder.  My anniversary is coming up to eleven years dealing with the diagnosis of cervical dystonia and now botox is not effective.  I also have right arm nerve damage since my last botox injection in March and am currently taking a drug for the, Gabapentene.  I have just started taking Artane for the dystonia.  Can someone give me advice on any other avenues I can take to live with this disorder rather than this disorder living with me.

0 likes, 8 replies

8 Replies

  • SteV3
    SteV3 susan22615

    Posted

    Hi Susan,

    I have Generalised Dystonia, but have Cervical Dystonia which is controlled by 6 Botox Injections (4 x in the left side of my neck, and 1 in each shoulder). I have justt had my Flu jab, I have them every year.

    Controlling Dystonia, in my case is complex because I have other major problems as well. Shot-term memory can be a side-effect from Artane, but also Dystonia can do this on its own, because its a nerve disorder.

    Cervical Dystonia is difficult, which is why Botox is offered mostly, but there is Madopar, but this drug you need to be weaned on to, and it can have serious side-effects - I would suggest you look them up on Google.

    Another drug I take is Clonazepam for Dystonia, its another drug that can be taken with Artane.

    You mentioned Gabapentene, I found these totally useless for muscle/nerve pain. So, I was put on Tramadol 50mg, this as increased over the year to 100mg Slow Release twice a day, and combined with Amitriptyline at nights for sleeping problems I have. I am also on Paracetamol and Codiene, for pain as well.

    The problems I have is many of those medications cause Epilepsy or Functional Seizures, but of which are serious. I have shoulder, neck and back pains - and swollen legs, ankles and feet. I do not know how bad your Dystonia is, but I have had it for 30 years, and was the 7th reported case in the UK. It was difficult to diagnose back then, now many more cases are around and some people that work do not even know they have it, sounds silly but true.

    Regards,

    Les.

     

    • susan22615
      susan22615 SteV3

      Posted

      Hi Les,  Thank you so much for your information.  I use to get Botox every three months in the neck area, 32 needles and 400  units each time for the last eight years.  I am not getting relief with it and in March I now have numbness on my right arm right down to my fake nails but only on the outside of the arm so this is the reason why I recently started the Artane on a gradual basis.  I have only been on this for 2 weeks.  I have been dealing with the effects from the flu shot for almost 11 years.  I do not have a problem sleeping as I have an adjustable bed and a special neck pillow.   Since February 2015 I went on short term disability and now am on long term disability.  I was an insurance broker and my neurologist said that due to stress at work, I am using up the botox within weeks of the injection.  I use to get the botox injections guided by EMG.  I am waiting to be referred to a specialist to inject the botox by ultra sound.  The top movement disorder specialists world wide are located in New York, Paris and Toronto.  I am very blessed that I have been refered to Toronto however could be a years wait..  Any suggestions in the mean time? Do you have an organization in the UK or a society for Dystonia?  We have one in Canada and there is one in the United States
    • SteV3
      SteV3 susan22615

      Posted

      Were you not informed about BoTox injections in the neck area and possible side-effects? This surprises me, because I was pre-warned before accepting the treatment, it can be dangerous, hence why it is normally injected in to the top muscles of the neck, and massaged in the muscles, so it cannot go further down the muscle and in to the throat area which can leave a person being fed by tubes for about 2 weeks.

      We do have dystonia based websites, but awareness is still quite new and many people do not even know the symptoms, or are oblivious to it, which even normal doctors do not pick up either.

      I was diagnosed with Dystonia by a Professor and a Neurologist Team from New York, but I had to visit them in Queens Hospital in London.

      I'll write more later, I have some bad spasms today, which makes it difficult to type the correct keys.

      Regards,

      Les.

  • Tezes
    Tezes susan22615

    Posted

    Hi Susan I have cervical dystonia, voice dystonia and dystonia tremor. I was diagnosed properly last year. I was given Clonazepam and Propranolol by my movement disorder specialist neurologist and sertraline from my GP for anxiety which is also a symptom of dystonia. Anxiety and stress also exacerbates the dystonia symptoms. I get away with ordinary over the counter pain relief tablets when I need them. 

    At this stage I don't know how progressive my dystonia will prove to be but for now my medication has given me my life back and reduced the limitations. I have also taken early retirement as I could no longer manage working which has made my life and ability to manage much better.

    its prob a good idea to ask for a review by a specialist Neuro to explore oral melds to suit you,

    good luck

    • susan22615
      susan22615 Tezes

      Posted

      Hi,  Thank you so much for your reply.  Are any of your symtoms related to possibly getting a flu vaccination?  I lost my voice for about 7 months and then I was able to whisper loudly and slowly my voice came back.  They said I had a strangulated vocal chords.  In the past sometimes after the botox injections my throat would close and I would be choking so they stopped injecting near my throat.  I tried physio therapy but this made it worse.  I also have no short term memory since the flu shot and I am less than 3% of the population that only see out of one eye at a time so I am an amazing proof reader and my eye exams are covered by the province of Ontario.  I also tried the chiropractor route and he promised me so much to help me but no relief.  I recently had reflexolgy and this helped.  I am told to try acupunture for relief but have not done this yet.
  • Tezes
    Tezes susan22615

    Posted

    Hi Susan

    No I haven't ever had a flu injection, I was offered one last year and again last week but declined for 2 reasons

    1. I have read that it can aggravate dystonia symptoms

    2. I have some exams in a couple of weeks so didn't want to risk it

    Having listened to my history etc my Movement Specialist Neurologist suspects that the cause of my dystonia is familial triggered by stress,

    regards

    theresa

  • jennifer83561
    jennifer83561 susan22615

    Posted

    My friend's son is now suffering from cervical dystonia after receiving a flu shot. He is 7. Can you tell me more about your situation? I was doing some research to help them and came across your post. I can see you've been dealing with this for quite a while. Thank you, Jennifer

  • sullysully
    sullysully susan22615

    Posted

    Hello I am from the United States. I received the Moderna booster bivalent my second one in October of 2022. November 7 two weeks later I started having neurological issues from gait to drooling and not able to speak. Fast forward to June 2023, 80 different drs, er visits, drs telling me I need to meditate. I went from a completely healthy woman 52 who had a baby at 45 to a Mom of a 6 year old in bed. Cleveland Clinic diagnosed me with cervical dystonia. Dr Ian Smith of CDA told me in mychart records that I most likely got inflammatory encephalitis or acute menigitis due to or in association with to Covid vaccine. I am in incredible pain. My first botox injections did not work. Ive gotten botox for wrinkles and now cant get because I have built up a tolerance. 1800 mg of gabapentin a day not working. Any advice or similiar issues. Please someone help.I feel like im loosing my mind in pain.

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