Health Organization for Pudendal Education

First - are you on the slow release tramadol? - because you cannot cut the tablets! If you do, then the whole dose gets dumped in your system immediately, not good!

What are the tablets you are taking?

Reason I have come off tramadol - because the doctor at the GP surgery (we don't always see the same doctor) said that even if the nerve had healed, and there was no more pain - if I then stopped the tramadol i would not know about it, because I would feel 'false pain' the same as before, this would be my body trying to get me to take the tramadol again.

He said I would have real problems stopping it, and he is certainly right there, I am indeed having real problems - not with stopping it, I have stopped with no problem, but with the pain that is now back full blast. I am not coping too well right now, I am doing all I can think of to help manage it and it is not enough. Its been a busy afternoon - I need to go to bed I think.

But is this pain even real? - maybe it is the false pain he was talking about?? All I can do is stick it out and wait to see what happens.



How did I manage with the stopping - I was taking 150mg slow release tramadol morning and evening. I cut this to 150 in the morning and 100 at bedtime, just about ok - then down to 100 morning and evening, not okay at all. Then down to 100 in the morning and an ordinary 50mg capsule at bedtime, even worse. Then stopped the slow release, and had just one ordinary capsule when I really needed it during the day, no more then two over the day - by this time, it wass not touching the pain at all - and then down to nothing which was very easy as it didn't feel much different.

At each step the pain got worse, I've tryed playing around with dosage in the past and I know that I am just about ok with 150 + 100, but 150 + 150 is better. And 200 + 200 is better still! - but I can manage with 150 + 150.

All this is slow release - the 12 hour stuff. Apparently it is much much easier coming off the slow release than coming off the ordinary stuff, that is why the pain clinic prefer it.

I've had no chills, no feeling sick, nothing like that at all - just the pain stepping up with each step down of tramadol.

I do have a bit of a fever and a sore throat but I think that's the gabapentin - happened last time I took it as well, i got every bug going round. Apparently it lowers the white blood cell count in some people, and you get more susceptibel to viral infections, that seems to include me.

Re nortriptyline - do start with a small dose, say 10mg at night, and stick at that dose until the side effects settle. Always take it at bedtime, not before. (If you jump straight in with 50mg then you won't know what's hit you.) At first it made me a bit sleepy but it was nowhere near as bad as amitriptyline. I've been told that the reason they give amitriptyline first and then nortriptyline second is because amitrip is 'cheap as chips', and some people do manage to take it with no problems. I kept it at 10mg for ages, and then took it up to 20, and then to 30. Then down to 25mg where I am holding it at the moment. It is having a small effect but that's all - for instance I am still feeling the PHN in my back where I had shingles.

I am not on slow release so I think it is easier for me to wean off. I tried the slow release 1st and it did not do jack, but then again the other stuff has done very little.

I hope the Doc knew what he was talking about, about "false pain", have you seen this in any other source when researching tramadol and if so how long is the "false pain"supposed to last? At what point do you say it isn't false pain because it has gone on too long, and you need to go back on tramdol for real pain?

I tried elavil as one of my very 1st meds more than a year ago, starting at a low dose and titrating up to avoid drowsiness, and the results were very promising. But I still had to go off it due to side effects and I have heard nortriptiline is elavil without so many side effects. So my insurance can pay their bit and I will try it. I soooo want it to work so well I can ditch neurontin! Ah to be able to remember stuff and multitask again!

HerMajesty wrote:I am having trouble understanding why you decided to get off something that seems to have been helping you to be pain free.

Calluna, I am having trouble understanding this too. I know about the concept of " phantom limb" pain but I can't see how this applies here. You have real pain because your nerve was injured in surgery. With tramadol you had much less pain and could live a fairly decent life. Why did this GP have to say something so stupid and why is the pain consultant apparently in agreement with him? I can understand that you might be concerned about your ability to get off of tramadol, but now that you know you can do this, even though it was very hard, I don't feel like you need to go on and on with the gabapentin when it causes you to feel bad. Just my opinion though.

Jeanie

Same here. Tramadol gives you good pain relief and is not very addictive in your case. That is fantastic. Go for it.
None of my pain doctors had any objections writing a script for Tramadol. The only problem is the interaction with other drugs like Cymbalta but apart from that it is quite safe.

HerMajesty - I am told by the pain clinic that the slow release is much easier to get off than the ordinary stuff, that's part of the reason why they prefer to prescribe it. The other reason is that they find it is more effective with chronic pain. So that might perhaps explain - in part, at least - why you and I have had such different experiences with stopping tramadol?

JeanieC - and ezer - I am coming off the tramadol because I am really hoping that my pudendal nerve is going to heal, and I'd like to know about it, if it does. Or - who knows? - maybe it has already healed.

The GP talked to me about false pain caused by long term use of painkillers. He told me that if I stopped taking tramadol, I would experience pain exactly as I did before, even if the nerve had healed, and that this would be solely due to my body wanting more tramadol. This would mean that even if the nerve had healed, I would still feel the same pain. So how would I ever know that the nerve had healed? The only way was to stop taking the tramadol, and wait.

I gather that I have to stay off the tramadol for 2 full weeks at least. I can't take any related painkillers, which means I can't take my codeine, I haven't got anything else that helps other than my conservative treatments. If I am still having this pain after two full weeks, then it is real pain. (Feels pretty real right now, I must say.)

But the good side of this, if my pudendal nerve has already healed then this could be just false pain and all I have to do it stick it out for a bit - it would be less than two weeks - and that would be the end of it! I am really really hoping that this is the case.

HerMajesty - I meant to add, I've been told that the best results for managing neuropathic pain are with a combination of an antidepressant and an anticonvulsant, in general.

Nortriptyline is an anti-depressant, it is one of the old TCAs - tri cyclic antideprssants. And of course gabapentin - trade name neurontin - is an anticonvulsant. That's why I am on both of these. Taking the two together, means that pain relief may be achieved at lower dosages than if either was taken by itself. This way, side effects can be minimised.

I would say that anything that cuts into your pain without intolerable side effects is fine. When I have the day off and sleep late, I can last till dinnertime before I take a Vicodin. Other days, I have to take one in the morning and then oxycodone when I get home. I definitely go into withdrawal (runny nose, watery eyes, insomnia) if I don't have some kind of pain pill by evening but nothing as bad as when I quit smoking 20 years ago. PN pain is more related to stress and activity levels and of course sitting time. I can always tell the difference between opiate withdrawal and PN pain. In my personal experience, if your PN pain does go away you can always cut down slowly and feel like crap for a week and be done with it. I've read that gabapentin withdrawal can be worse than opiates for some people. Notryptelene put me through the roof. I'm going to try Lyrica over Christmas. Everyone just has to see what they can get away with. Pain is a condition just like high blood pressure except it's a lot harder to ignore.

Just so everyone knows, (and a little off topic), don't EVER stop Neurontin (Gabapentin) cold turkey. You MUST go slowly. Stopping suddenly can cause Seizures in people who have never had Seizures before.

Thanks for the info about neurontin withdrawl pianogal; when I try to get off that I know I am going to want to wean anyhow because if I miss a dose or two I start feeling extremely tired...the kind if tired that would make you fall asleep while driving down the highway...so I do get some kind of withdrawl from that as well. I hate the stuff because of what it does to my mental function so I will get off it if I can without ruining my quality of life. But Calluna, if that thing applies to me about the most effective therapy being an antidepressant and anticonvulsant combined, I guess I should keep the neurontin because I am pretty sure it is the safest anticonvulsant. A neurologist recently recommended tegretol to me but I am pretty sure the long term effects are much more dire (?)
Calluna I am glad you are giving it only 2 weeks. I seriously question that Doctor but I understand that a 2 week trial without tramadol, although painful is not going to kill you.
One thing I am so happy about in weaning of the tramadol: I am somewhat of a "morning person" again! I keep waking up before the alarm. At my highest dose (4 of the 50mg pills per day), no matter how much sleep I got, I would not wake up until the alarm rang and when it did ring I wanted to die. It was very hard to get out of bed. Now here I am up an hour early with no cup of coffee in my hand

Calluna,
One of my neighbors is a doctor and I passed by her your doctor's theory. She was surprised and disagreed. She says that if somebody is helped by Tramadol then take it and that it is very different than using it for recreational purposes. Obviously she doesn't know you and your medical history and I am not offering a medical advice here but why don't you consult with another doctor?
Dr.Weiss also said that if Tramadol helped it was perfectly alright.
I had periods where my pain was lower and I automatically lowered my dosage of Tramadol which is a proof in my mind that I was not taking it for the buzz.
Neurontin never worked for me.