Pregablin or nortriptyline for chiari pain

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I have chiari malformation type 1 and have been really struggling with the occipital pain and pressure eye ear throat and facial pain also get neuralgia pain and sharp shooting pains I'm awaiting neurosurgeon opinion my neurologist has referred me after ruling out occipital neuralgia trigeminal neuralgia sinus problems bla bla and trialling different drugs ftom gabapentin tegretolxr amitryptilline and nortriptyline due to massive side effects I stopped meds but the pain has now become harder to manage long story short I ended up at casualty today and drs spoke with neurology re management of chiari and symptoms the 1st drug mentioned was nortriptyline and then pregablin 75mg twice day any advice and experience re pregablin and pain management in chiari very welcome please

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12 Replies

  • Posted

    Hi Vicky,

    Like you, I suffer with eye,ear,throat pain. Don't know if you have had surgery. I have in 2014. Based on the probably 100 drugs the have tried me on, nothing worked. The benefits were few and the side effects were many. At this point I take cymbalta for depression and pain, a sleep aid, stomach pill for gerd and bp pill. All the opioids or morphine don't touch the pain. I have back pain, leg and neck pain. I am thankful I'm walking. Lyrica and gabapentin felt like it gave me neuropathy. Not certain if I took notrypline. I don't want to sound so negative but I can sugar coat things or tell u the truth. I spent so much money on drugs it is horrible. The best thing I can suggest is to find a good psychiatrist and get a good antidepressant. Stay around positive people. Get into some good support groups on Facebook and get different opinions. We are all affected differently and at different points in this journey. Blessings

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    • Posted

      HI there, I was just like you are - got  back pain now after surgery - headache on and off, but I will not take any drug unnecesarily, but Deluxcitine have less side effect then others..try not to take amytriptiline or any opiod..get supplements (vitamins) make sure keep moving (Yoga is good for you) each morning just do it at home..massage if you can afford it, but choose the right person..osteo helpful as well
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    • Posted

      Thanks I always refer to these forums I find them really helpful it's such a long journey we all travel before we get positive outcomes

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  • Posted

    Hi vicky. Sorry ure having hard time at moment. I suffered from trigeminal neuralgia. I felt suicidle as pain was horendeous. I was on Carbamazapine. Altho still had niggling pains now and again. It kept it at bay. I had decompression surgery 2 months ago. And i now dont have any facial pain and also stopped the medication. Hope u get relief soon xx
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    • Posted

      Hi Violet,

      Do not worry the first 3 months post surgery is hell..didn't your NS explained that to you..but as the time goes by - you will feel better, just make sure dont do too much..it takes at least 8 - 9 months before you feel normal again, but keep moving (gentle) wlking 5 mnts then drinking 2 ltr liquid daily is a must.supplements in take also good ..

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    • Posted

      Hi u replief to me by mistake. Im not having problems. My symptoms have improved by 80 % within 2 months of having op. X
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    • Posted

      I'm hoping I don't have to wait long for neurosurgeon appointment and I'm hoping he's gonna have good knowledge of chiari

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  • Posted

    HI there, had you done surgery yet, for me its help a lot even though after such a great 5 months pain free after the op. I started getting back pain and headache 9 months post surgery ..but still MUCH BETTER prior decompression..so if I were you..I will not wait too long chase it up with your GP to get you the ops. AS AP
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    • Posted

      No not had surgery my neurologist is referring me to neurosurgeon and I'm gonna push for decompression as I hate these pills management of chiari and symptoms is extremely difficult it's 17 mnths I've had of continuous symptoms and intermittent episodes since 2010 I really wish there was a pill u could take like paracetamol to manage pain during bad days cos the side effects from drugs make life difficult

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  • Posted

    having had decompression surgery many of my pre op symtoms have come back, I was given pregablin to try, side affects were terrible anxiety attacks,palpatations and the worse no sleep just could not switch off at night I was lucky if I got 3 hours apparently it only works for 1 in 7 people so its not for everyone.
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