Pregablin or nortriptyline for chiari pain
Posted , 5 users are following.
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
0 likes, 12 replies
Apple62 vicky59618
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
b2wc97455 Apple62
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Apple62 b2wc97455
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vicky59618 Apple62
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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
violet47232 vicky59618
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b2wc97455 violet47232
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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 ..
violet47232 b2wc97455
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b2wc97455 violet47232
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vicky59618 violet47232
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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
b2wc97455 vicky59618
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vicky59618 b2wc97455
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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
bowb42 vicky59618
Posted