The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Chiari 1 - please inform yourself on this

Discussion in 'Neurological/Neuro-sensory' started by Vickytoria1988, Sep 1, 2017.

  1. Vickytoria1988

    Vickytoria1988

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    Hi all,

    There are more useful threads about Chiari 1, but I would like to bring to the surface my relevant story. Who knows, I may help somebody.

    I have been suffering with vertigo during my early years 16-19. When I was 21 a non-stop headache started and I became almost invalid from incredible pain. Headaches came together with extreme fatigue and a total break down of my immune system. Acupuncture offered me 4 years of complete relief since then ( I found a really good practitioner). And here am I now in my 29s. Bedridden with constant pain. I dont know how I do it. Acu does not work any more. I think I have damaged some nerves.

    I have seen 13 neurologists and only the last pointed out that I have Chiari 1. The rest sent my to the psych to find my inner self.

    Chiari 1 means a herniation of the tonsils of the brain down in the spine which may cause problems in the circulation of the celebrospinal fluid. The symptoms seem to be similar to those of CFS including headaches, numbness, cognitive problems, balance problems, vertigos....

    So yes I have a herniation of 7mm that does not cause however any disruption of the circulation of my celebrospinal fluid since my scull leaves space for it.

    I did a lumbar puncture too (it hurts) and my cranial pressure was ok. However, the neurosyrgeon I saw (and apparently he is really good) said that even if the MRI does not show it, the brain may get swollen during the night, the circulation of my fluid may stop and cause all these problems.

    So he proposed surgery which I will not do because there is no absolute proof that Chiari 1 causes it. I do not have the typical Chiari 1 headaches which start in the back of the head and go forward. My neck or shoulders do not ache and I am not in pain when i laugh or caugh. I know that surgery will not fix my mess. I do not see good impressions from patients after surgeries.

    I am on Efexor and Xanax now and I pray to God to get better. Because I can be 95 per cent healthy if I decide to get lazy in my life.

    Topiramate and Amfitriptiline killed me. Lyrica offered very modest relief from nerve pain in my head.

    So seems Chiari 1 is found in a tiny blind spot that brain MRIs may do not detect, while MRIs of spine show it wonderfully.

    And yes, I lost 13 years while I could know about it and be happier and healthier now. Because all my odd symptoms, including headache when I bend, these crazy vertigos and headaches maybe literally come from my mind and not from psych problems.

    Conclusion...

    Do an MRI of your upper part of your spine next to the MRI of your brain!!!! And of course ignore your doctor if he says you dont need to!

    May love save us all.

    Victoria
     
    -Jessie-, pattismith, Woolie and 2 others like this.
  2. perchance dreamer

    perchance dreamer Senior Member

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    Vickytoria1988 likes this.
  3. Vickytoria1988

    Vickytoria1988

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  4. Alvin2

    Alvin2 If humans were rational...

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    Is this the same as an arnold chiari malformation?
     
  5. Vickytoria1988

    Vickytoria1988

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    Hi @Alvin2 yes it is the same. There are four types, Chiari 1 is what I have.
     
  6. Kina

    Kina

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    I think patients with EDS are particularly vulnerable to chiari malformations.
     
  7. Vickytoria1988

    Vickytoria1988

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    @Kina what means EDS?
     
  8. Alvin2

    Alvin2 If humans were rational...

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    I did not know there are types, how do i find out which one i have (i have an MRI which shows it but i'm not trained to read the images). The report does not say a type
     
  9. Kina

    Kina

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    Sorry -- Ehlers-Danlos Syndrome
     
  10. NotThisGuy

    NotThisGuy Senior Member

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    I have EDS, but haven't checked any Chiari malformations.

    However I took the combination of effexor and xanax for a while.
    Effexor for several years and xanax for 6 months.
    It was ...interesting... changed me very much while I was on it, but not really in a good way. However it improved my fatigue and mcas symptoms.
    Since I developed a tolerance to xanax and needed higher doses it wasn't really a long term solution.

    Withdrawal of xanax still was ok. Withdrawal of effexor almost killed me and this is not just a figure of speech.
     
  11. Vickytoria1988

    Vickytoria1988

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    Hi @NotThisGuy ....thank you for your reply. I take Effexor as I do not see any other solution for the moment. I am very worried but I need to find sth to help me with all this pain. I start having serious memory problems, like not forgetting only moments but entire chapters. Lets hope.

    Anybody that was relieved for head pain thanks to Effexor?
     
  12. mhrps

    mhrps

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    I have chiari and had a decompression surgery. Actually it helped a lot with numbness and neck pain.
     
    Vickytoria1988 likes this.
  13. Sushi

    Sushi Senior Member Albuquerque

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    Chiari surgery was "the fashion" in ME/CFS circles some years ago as it seems a higher proportion of our patient group has it. But there were mixed results. I followed the stories for some years and one thing that became clear is that, if you are considering the surgery, go the the best Chiari surgeon as it needs a lot of skill and experience.

    Thanks for sharing your experience.
     
    pattismith and ScottTriGuy like this.
  14. Vickytoria1988

    Vickytoria1988

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    Thank you very much @Sushi.
     
    Sushi likes this.
  15. NotThisGuy

    NotThisGuy Senior Member

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    Nothing wrong with that. If my liver could tolerate effexor/xanax I'd still take it. With all the side effects I still had a better life than now.


    Effexor has a weak agonism to opioid receptor. The only pain I had was in my lower abdomen and effexor fixed it to some extend.
    I'd guess xanax will have the greater effect for pain in general. At least I had none while I took xanax.
     
  16. Vickytoria1988

    Vickytoria1988

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    http://www.nytimes.com/2009/09/03/fashion/03SKIN.html?_r=1&scp=1&sq=migraine plastic&st=cse

    I found this link, previously also posted here by @Cort (Thank you so much.).

    I also visited the website of the mentioned Doctor: http://drbahmanguyuron.com/

    I somehow know that the excruciating pain on the top of my forehead will not go away and that there is damage of the nerves there. I also know that antidep will not work, even if i hope so.

    I am in this bed, completely debilitated and I know somehow that one day I will do plastic surgery to decompress my nerves. I am not going to do a Chiari surgery, I know it will not help.

    Its a complete madness and normal people will never understand it.

    Its a journey and a long path of sadness but I will get out of it. Alive and healthy I hope. It seems it will take me years.

    PLEASE, if u know something more about decompression surgeries for headaches, please PLEASE inform me.

    I am in Europe (Greece), the US is still so far away.

    May God help us, sufferers. I am devastated from pain and those freaky pills (Xanax and Effexor) are turning me into a zombie.
     
    pattismith likes this.
  17. lilpink

    lilpink Senior Member

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    I know someone who has a 6mm Chiari 1 herniation (from MRI) and has had some problems with this that were triggered and/or made significantly worse by taking proton pump inhibitors (such as omeprazole and lansoprazole) and H2 receptor blockers (such as cimetidine) for gastric problems. The doctors she saw refused to acknowledge that the drugs were having a serious effect on her and said that her herniation wouldn't interfere with CSF circulation. NB The side-effects (including classic Chiari-type headache on straining) weren't noticeable when she started taking the drugs but built up over time. So take care if you have Chiari 1 and are prescribed these particular drugs.
     
    Vickytoria1988 and pattismith like this.

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