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Old 10-24-2014, 08:23 AM #1
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Default Had to stop drugs now what???


My liver function tests were rapidly increasing so I have had to stop the carbamazepine which has left my in so much pain, I have tried gabapentin but it doesn't give me any relief, also had duloxetine but that hasn't helped either.

My arms wrist and hands are agony my feet and ankles are getting worse, I am sleeping with ice packs to ease the burning, I am so tired.

This SFN is just so difficult to manage, I was just about doing ok on the carbamazepine but what can I do now?

Next neuro appt isn't until April next year
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Old 10-24-2014, 09:10 AM #2
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Very sorry about this. Did your doctor not have any suggestions? You should call and ask for alternatives. April is way too long to wait.
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Old 10-24-2014, 11:50 AM #3
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Pain clinic doc has offered a 2nd round of lidnocane infusions but they can't fit them in until mid December, I have to have more bloods and maybe if they are normal I can try a low dose of cambamazipine again but have weekly blood tests to monitor it.
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Old 10-24-2014, 03:53 PM #4
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Do lidocaine patches help at all? They seem to help my feet.

Quote:
Originally Posted by Billylyne5 View Post
Pain clinic doc has offered a 2nd round of lidnocane infusions but they can't fit them in until mid December, I have to have more bloods and maybe if they are normal I can try a low dose of cambamazipine again but have weekly blood tests to monitor it.
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Old 10-25-2014, 06:49 PM #5
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Originally Posted by Billylyne5 View Post
Pain clinic doc has offered a 2nd round of lidnocane infusions
What is a lidocaine infusion?
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Old 10-25-2014, 09:49 PM #6
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It sounds as though you are desperately seeking something to help until April, or at least December. It also sounds as though your Doctor's are failing you and leaving you to live in pain.

If I were you I'd seriously consider marijuana. I'm not joking. It has helped many. If I was unable to take pain medications I wouldn't hesitate.
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Old 10-26-2014, 09:29 AM #7
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Lidocaine is given IV under careful conditions for systemic nerve pain. Since lidocaine is a sodium channel blocker, it works for some.

RSD patients try it, and we've had Malawigirl here get them in UK and post about it.

There is research on Nav1.7 sod channels ongoing.
http://www.ncbi.nlm.nih.gov/pubmed/23232607

http://oicr.on.ca/news/news-releases...channels-safer

There may be an oral drug in the near future. Lidocaine can affect the heart, so it is not an ideal solution. The patches may work on targeted areas, but global burning symptoms can't use many patches a day.
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Old 10-26-2014, 03:37 PM #8
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Quote:
Originally Posted by Billylyne5 View Post

My liver function tests were rapidly increasing so I have had to stop the carbamazepine which has left my in so much pain, I have tried gabapentin but it doesn't give me any relief, also had duloxetine but that hasn't helped either.

My arms wrist and hands are agony my feet and ankles are getting worse, I am sleeping with ice packs to ease the burning, I am so tired.

This SFN is just so difficult to manage, I was just about doing ok on the carbamazepine but what can I do now?

Next neuro appt isn't until April next year
I'm so sorry to hear your feeling so bad. Can you email your neuro? Mine has a patient portal that I can message him though.

I'm not sure if you can take Elavil with your liver enzymes. I just started it and I think it helps a little. If nothing else it helps me sleep. You need rest! I'm always so much worse when I don't sleep!
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Old 10-26-2014, 04:54 PM #9
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Ooo

I can't take amatryptilene as it stops me peeing 😳
I had had the lignocaine infusions in June as a day patient in hospital, I had to be hooked up to bp and ECG machine and had obs every 15 minutes during the infusion. Then there is no driving for 24 hours. It was done once a week for 3 weeks and gave about 5 weeks of good pain relief, so it was effective but quite short lived and takes two days out of my work week so not very convenient but worth it to get rid of the pain at least for a while.

I tried increasing the cymbalta but it makes me feel so ill, I have to lie down all day and the pain is still there so not exactly effective.

It would seem that the sodium Chanel blockers are what works for me as both lignocaine and cambamazipine are those. So maybe that means my SNF is caused by a problem with that bit of my malfunctioning body ????
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Old 10-26-2014, 07:44 PM #10
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Quote:
Originally Posted by AussieDebbie View Post
It sounds as though you are desperately seeking something to help until April, or at least December. It also sounds as though your Doctor's are failing you and leaving you to live in pain.

If I were you I'd seriously consider marijuana. I'm not joking. It has helped many. If I was unable to take pain medications I wouldn't hesitate.
X2 on cannabis.
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