How I cope with my chiari 1 headache

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I am just writing here of my tips if you are suffering from what I am suferring daily and every single minute and when every medicine do not help you at all even you are not able to sleep, a friend of mine came one day because I was crying for help because I was in a lot of pain after being discharged fro the hospital, they were not able to help me, I am now waiting from the neuro surgeon that I like for him to do decompression for me, but because he is not my local neuro surgeon I have to bear this pain as he has a long waiting list. My friend massage me first of all with coconut oil..before that..she asked me to have a really warm shower, but in particularly on my neck just underneath the occipital where the C1 and C2 she asked me to increase the heat more than warm (a bit hot - but not burn your skin) after that she massage me all over..before finish she spray me with magnesium oil very thinly, but more so in the neck under arm..on my back..my leg..on that night I have 5 hours sleep..from then on..I have been doing it..I take only duluxitine 30 mg and paratemol before I go to bed..each night and repeat with shower than massage before going to bed than spray with magnesium oil without fail I rub gently especially in the neck , arms, my back, legs...I am now still fail painful..but bareable..so..beside drinking 2 - 3 ltrs waters daily..stopped by 8 at night..eat fruits and vegs (best kale and beetroot), I dont eat anymore food that content gluten such as : anything with wheat (bread, cake, pasta,pastry,oat) so for carb , I have potato or rice, I make my own wrap by buying rice flour with I mix with soya milk or rice milk taste better, I also eat lots of health, cheaper staff, hardly buy fast food any more, I don't consume any soda drink such as coke, fanta etc..its seems my muscle pain seem ease..every body different..when I talk to my health care professionals, they told me that I was kind to my body that is why my body seems healing it self..but Chiari is mechanical default..so the condition itself can only be amend by surgery however the effect of it can ruin our system but our body is strong because we look after it we don't tend to suffer that much..hence I perhaps do not feel pain as I used to be 6 months ago..I also take supplement for 60 days, which I stopped now as I haqve done it to kick start while I get used to eat healthy life style..so why don't you try it..taking lots of medicine only giving you harm in a long run.. short term will help you to cope..but you have in that packet the side effect of taking the medication...so if you can..be brave change your life style..persevere...also take a bit of exercise even gentle walk..no matter how hard it is..5 minute if you can..then increase it depending on your condition..GOD LUCK

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  • Posted

    It sounds like you are a very motivated and brave person. This illness is so debiliatating that it is hard to deal with the constancy of the pain that it can destroy your normal life. However, you are doing all you can to claw back your life. Well done. Your attempts to feed your body well and stay healthy are commendable. The headaches sound horrid (understatement) and I imagine that it is hard to see the future but all the very best with your (and I hate to say it...) journey.
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    • Posted

      Hi Viola,

      Believe me, When I started, it was the hardest chore \i have ever done, it worse than giving a birth, because I ued to collapse..and I thought \i was going to die..its only the thought of the side effect of all the medication that I read inside the package of the medication that made me scare even more..what happen if I also suffer with cancer and others....I imigining lots of what if...then reading all the unsuccessful stories just terrify me even more..then I thought to myself enough is enough..I just feel so demoralised..feeling so inferior..to depend my life to my family..I used to be so independent and suddenly I become like vegetable, I just thought I am not having this..hence I started to  fight..and keep telling to myself..that my body should heal it..and keep praying each day..start learning nutricion..look at lots of clinical trials about the advantage of eating healty diet plus the benefit of mineral such as magnesium, grape seed extract, vit D, anything that good for our brain, bllod circulation and oxygen..so..I just start to meditate, being guinea pig to myself with the help of my friend who said that magnesium being used at her hospital a lot for A&E and in cancer treatment..that is when I start to take the oil and she keep massaging me each day..it is only start to see the difference after 5 weeks taking it..then I was able to walk..slowly..I increase from 3 to 5 minutes..and carry on now I am able to walk to 2 - 3 miles..I search on the web as well, when i follow up the poleo diet I feel less dizzy...of course I still have headache..but it is bareable..it is definately help me a lot, I also liaising with my health care professional..without fail each night I also drink millk and tumeric (hot) , you can try..it is not an easy task..take time..its help me..I hope it can help you as well. GOD LUCK

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  • Posted

    I know exactly what you are going through, I was in so much pain after the decompression. 24/7 for 5 years. Went to all kinds of doctors, treatments and medications. I was in pain all over my body that I was even in a wheel chair and taking 16 meds a day and still was in pain. I would cry and telling my husband that I wished that I could just have one day without the pain.

    I was misdiagnosed with fibromyalgia. I went to Mayo, unable to help, finally found doctors that are experts in chiari in Aurora, Colorado. Found out that I had CSF also cause by chiari. Had a blood patch and taking a med for epilepsy which helped with the pain. It's been a year not using wheelchair, not in pain. Once in a while I'll get a headache but not like before. Working on balance,dizziness, vertigo and nausea.

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