Health Organization for Pudendal Education

Yes, the cost/benefit in terms of side effects vs pain relief just does not add up for me. My GP has been talking about pregabalin which I think is lyrica, that is going to wait until I am off all this. Duloxetine (cymbalta) has also been mentioned - so we are back to the old combination of anticonvulsant + antidepressant yet again!

The only thing is that these are both still black triangle drugs... that does make me pause for thought.....

Calluna, I am curious to know what the black triangle means, have not noticed it here. Hope you are doing fine with coming of your other medications.

Hi JeanieC - a black triangle drug is one that is still under intensive surveillance here in the UK, new drugs are monitored in this way to ensure that they are safe. There is more information about black triangle here, there are links to the current list at the bottom of the page. The generic list is here - that's a pdf by the way. The lists are revised monthly.

And I have just noticed that Pregabalin is no longer on the list, excellent!

Calluna,

Maybe I missed something because this is a long thread, but I am STILL having trouble understanding why you went off tramadol and are going through pain and side effects to find a different med. Tramadol was not a good med for me but it really seemed to be working for you! Are you considering re-starting it?

helenlegs,

I have been on gabapentin a year and a half and can tell when I miss a dose because I become profoundly tired. so I do see that as another drug I will need to wean off of, not just stop

pianogal wrote:hi,
fyi, if you do get off tramadol, it can have serious serious withdrawal.
I was only taking one or two pills a day and not increasing pills at all, but the withdrawal was terrible even though I did a slow taper. I had trouble breathing, trouble walking from bathroom to bedroom, out of breath, thought I was having heart attacks, blood pressure doing weird things... and all of it stopped as soon as I took one tramadol again.

I went to ER cause I thought I could be dying.

The breathlessness was so painful.

So, do it slowly if you get off it... very very very slowly. If you have weird symptoms like mine, it's withdrawal. I was having withdrawals on quarters and halfs of pills... so keep breaking them up smaller and smaller.

I had similar torture getting off neurontin and vicodin. Neurontin, if gotten off quickly, can cause seizures... it has to be the slowest of tapers. even over months preferable.

Good luck.

By the way, after being off pain meds, the pain is about equal almost. the meds put constipation on the nerve, creating more pain... so once constipation is gone, pain goes down.

No, No Hermajesty carefully does it ! !
I know everyone is different but we should treat all drugs with caution and the seriousness they deserve. I honestly thought coming off gabapentin/neurotin would be no trouble as I had 'little' in the way of side effects but it has taken ages and not been pleasant. Then again I only have the constipation to deal with in the case of tramadol.
Take care all
Helen

HerMajesty wrote:Calluna,

Maybe I missed something because this is a long thread, but I am STILL having trouble understanding why you went off tramadol and are going through pain and side effects to find a different med. Tramadol was not a good med for me but it really seemed to be working for you! Are you considering re-starting it?

helenlegs,

I have been on gabapentin a year and a half and can tell when I miss a dose because I become profoundly tired. so I do see that as another drug I will need to wean off of, not just stop

Hi HerMajesty - I went off tramadol because I was no longer comfortable taking it all the time - by which I don't mean comfortable physically, it has never done more than take the edge off and bring the pain down a notch or maybe tow - I mean comfortable in my mind.

I know that the comment about addiction was quite simply wrong. I know also that the comment about false pain and that the nerve might have healed and I wouldn't know it - I know that comment was very controversial and that there are not many doctors who share that point of view. However knowing something intellectually and being able to get past it emotionally are two different things.

I have talked with my GP about this at some length and we decided that maybe it was time to try a different tack, and look for something that helped more, and maybe actually made the pain go away completely. So I have given gabapentin a reasonable try, and am now coming off it before we try the next thing. I am taking tramadol as needed, in the meantime - not every day by any means.

I am also waiting to see Dr Greenslade at Bristol, he is a Pain Management Consultant with a special interest in PN, it will be useful to get his opinion on my situation if nothing else.

And by the way, I am finding that coming off gabapentin is making me very tired. I am sleeping a lot at the moment - I hope to be completely off it by this time next week, and then hopefully I will be back to normal.

calluna wrote:
Hi HerMajesty - I went off tramadol because I was no longer comfortable taking it all the time - by which I don't mean comfortable physically, it has never done more than take the edge off and bring the pain down a notch or maybe tow - I mean comfortable in my mind.

This makes sense, I got the mistaken impression from the original discussion that the tramadol worked very well for you, maybe even that you were pain-free.

I was on and off gabapentin a few times before I went on it "permanently" a year and a half ago, and once during this last year I also cut way back on it to see if it was really helping (it was, I started to flare when my gabapentin levels started to drop)...the tiredness does not last long at all. For me at least it is a much easier med to come off of than tramadol.