Does anyone have bilateral tn1 and tn2. I have both but I get very sick when taking pills. Put on nortriptyline 10 mg took it for a while got worse so I had to take 2. Started on 3 after 2 weeks got very sick from the pills. Started taking less pain starting to come back. I am no good with any kind of pills make me very sick. Has anyone had injections or surgeries for it? Does anyone have any suggestions for what I can do
Does anyone have bilateral tn1 and tn2. I have both but I get very sick when taking pills. Put on nortriptyline 10 mg took it for a while got worse so I had to take 2. Started on 3 after 2 weeks got very sick from the pills. Started taking less pain starting to come back. I am no good with any kind of pills make me very sick. Has anyone had injections or surgeries for it? Does anyone have any suggestions for what I can do
@denny2788 you will notice that I have moved your post into an existing discussion on TN so that you may read through the discussion as well as connect with members such as @ingo who has also expressed concerns with tolerating medications.
Hi , I’m so sorry to hear your in my prayers I don’t know anything about anything I’m so new to all of it. My neurologist appointment is this coming Monday I’ll know more about what’s going on with my head. I’m keeping you in my prayers.
i have Idiopathic neuropathy and its in my head neck shoulders arms hand both my legs and feet even between my legs. In others words whole body. I had it for almost 3 years and its starting to get worst. taking pregabalin 300 daily along with duloxetine 30mg along with celecoxib 400mg daily. I am afraid it will take my eyes and hearing along with my limbs which leaves nothing left to work with except pain and pills. I am looking into stem cell therapy, prednisone or IVIG therapy. If anyone has had any success with the above mention treatments I would love to hear from you.
I am not diagnosed with anything but I have every one of your symptoms. Burning-stinging -numbness-faciculations-everywhere. My toes cramp and my legs are always cramping. I have had MRI’s-skin biopsies and many blood tests. All unremarkable. I take 900mg gabapentin and 40 mg Nortripline. Helps with the pain but I still feel every symptom and it is always progressing . My strength is good and tests are negative- my doctors offer no more suggestions. They appear to not be particularly concerned but don’t ignore my concerns. I want my body that I recognized my whole life back. It’s just sad. I am not giving up and I want answers-in the meantime I let the doctors treat my pain best they can. I wish you answers-try to concentrate on the things they can rule out. It might be
Reassuring and help you to not be so fearful.
The dr thinks it’s nerve damage waiting for them to call to make the mri appointment to find out what’s going on. Put me on gabapentin 300 mg three times a day with divalproex twice daily. Pain comes and goes but better then it was.
@lbo615 Hi. How long have you been on Oxcarbazepine? My doctor just prescribed it. I’m always nervous to start new drugs because I’m really sensitive to medication. I just tried Lyrica and had very bad side effects within the first day, so now on to Oxcarbazepine. Can you tell me a little more about your experience with Oxcarbazepine? Thanks!
@lbo615 Hi. How long have you been on Oxcarbazepine? My doctor just prescribed it. I’m always nervous to start new drugs because I’m really sensitive to medication. I just tried Lyrica and had very bad side effects within the first day, so now on to Oxcarbazepine. Can you tell me a little more about your experience with Oxcarbazepine? Thanks!
Hello,
I too am sensitive to meds so I was anxious about it when prescribed. When I had the first bout of trigeminal neuralgia I think I would have tried anything-it was so painful. It stopped the pain! After the first dose. I did take it for a few weeks. I have it just for that. I’ve had to use it only twice. I take it with me everywhere I go and on trips just In case. It may have made me a little sleepy but don’t remember any other side effects from it. Good luck!
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Does anyone have bilateral tn1 and tn2. I have both but I get very sick when taking pills. Put on nortriptyline 10 mg took it for a while got worse so I had to take 2. Started on 3 after 2 weeks got very sick from the pills. Started taking less pain starting to come back. I am no good with any kind of pills make me very sick. Has anyone had injections or surgeries for it? Does anyone have any suggestions for what I can do
@denny2788 you will notice that I have moved your post into an existing discussion on TN so that you may read through the discussion as well as connect with members such as @ingo who has also expressed concerns with tolerating medications.
Thank you let me know what happens.
I am not diagnosed with anything but I have every one of your symptoms. Burning-stinging -numbness-faciculations-everywhere. My toes cramp and my legs are always cramping. I have had MRI’s-skin biopsies and many blood tests. All unremarkable. I take 900mg gabapentin and 40 mg Nortripline. Helps with the pain but I still feel every symptom and it is always progressing . My strength is good and tests are negative- my doctors offer no more suggestions. They appear to not be particularly concerned but don’t ignore my concerns. I want my body that I recognized my whole life back. It’s just sad. I am not giving up and I want answers-in the meantime I let the doctors treat my pain best they can. I wish you answers-try to concentrate on the things they can rule out. It might be
Reassuring and help you to not be so fearful.
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1 ReactionMy Dr prescribed oxcarbazepine (Trileptal) It helped almost immediately
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1 ReactionIs it strong because I get sick on pills. I will look into it thank you.
The dr thinks it’s nerve damage waiting for them to call to make the mri appointment to find out what’s going on. Put me on gabapentin 300 mg three times a day with divalproex twice daily. Pain comes and goes but better then it was.
I didn’t have any side effects.
@lbo615 Hi. How long have you been on Oxcarbazepine? My doctor just prescribed it. I’m always nervous to start new drugs because I’m really sensitive to medication. I just tried Lyrica and had very bad side effects within the first day, so now on to Oxcarbazepine. Can you tell me a little more about your experience with Oxcarbazepine? Thanks!
Hello,
I too am sensitive to meds so I was anxious about it when prescribed. When I had the first bout of trigeminal neuralgia I think I would have tried anything-it was so painful. It stopped the pain! After the first dose. I did take it for a few weeks. I have it just for that. I’ve had to use it only twice. I take it with me everywhere I go and on trips just In case. It may have made me a little sleepy but don’t remember any other side effects from it. Good luck!
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Hug
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