United Brachial Plexus Network

I have just found your board while searching on pain relief for TBPI I received in 1979. I have avulsed nerves and pain was relatively under control until 2ish years ago. It has gradually been building up since then until I found my consumption of Co-Proxamol was not satisfactory. I have been prescribed Amytriptyline (10mg) which helps a little but I'm unwilling to take this let alone up the dose. I've found articles which imply DLPA - Phenylalanine (an essential amino acid)might help this sort of pain. As the articles say it is very safe to take and not addictive I thought I might try it, but I would have to come off the amytriptyline first.
Has anyone tried this supplement?

Hi...I took varying amounts of ametriptylene for around 6 years and slowly weaned myself off it after I couldn't stand the (many) side effects anymore. Surprisingly, once the drug had cleared from my system, the pain levels went way down. If you have been taking this stuff for a while, and want to stop taking it, do it slowly over time...I once tried stopping suddenly and it was a very bad experience.

I have never taken DLPA, but have been researching it for a while. I'm tempted to try it myself although at the moment (fingers crossed!) I am not experiencing that much pain...other than that which seems to be the usual winter/cold thing that sets it off sometimes.

I might give DLPA a go if I can find somewhere that sells it...we could swap notes about how effective or not it is ;0) Incidently, there are a few messageboards and forums that have discussions about DLPA...go to Google http://www.google.co.uk/ put DLPA Phenylalanine in the search window, click on the 'groups' tab and you will get a lot of pages.

Liz B

Hi

I have been taking DLPA for years. I have posted about it before but its my miracle. I get a brand with vitimin B in the caplet as well. I thought at first it was in my head that it was making my pain lesson but occasionally i forget to take it and my pain increases. Recently ive found if my pain level is real high i can curb it by taking an extra caplet. I was turned on to it by a friend who owns a health food store. The brand he gets me is countyline. I have noticed that if it is kept fresh it seems to work better. But its certainly worth taking. My friend tells me there is no adverse affects unlike narcotics etc. It works best without food. I take it in the morning when i get up and when i get home from work. The pill i take is 1000mg with 10 mg of b-4.

John K

Hi Liz B,

May I know how you slowly off the Amytriptyline (10mg)? My dad is on this kind of medicine together with neurotin for about 4 to 5 months now so I'm a little worry about side effect.

Any advice for me would be much appreciated?

Have a nice day. Take-care & all the best.


Regards,
Hwee Yong

Hi, I'm the original poster of this thread. I think 10mg is the lowest dose of amitriptyline so I hope I won't have too much trouble coming off it. I also have only been on it since Autumn. I don't like the reported side effects - I certainly get the dry mouth and I really don't want to put on weight, hence the alternative of DLPA.
I'm going to just stop taking the amitriptyline every day - I forgot to get a prescription at Christmas so I had a few days without it. I don't know what problems I should expect or not - if anyone knows I'd be grateful.
I'll have to go back to max dose co-proxamol if the pain builds up again. I've also got a TENS box, but I rarely use it.
I don't know how long to be off the amitriptyline before starting the DLPA. I'll ask a pharmacist.
I've looked on the google boards and every where else and DLPA seems very safe. It also seems to have desirable 'happy buzz' side affects!

John, how many mg of Phenylalanine do you take every day?

Thanks,

Susana

1000 in the morning
1000 in the eve of DL-PA Im not sure what the DL is but the jar says its 50/50 DL and Phenylalinine

John K

John K
I have been trying to email you regarding DLPH but I am getting error....

pleas try to describe your DLPA product name/brand/numbers.....

I want to buy exactly what you are using
can you add more information (picture)
thanks


Ami

Hi Hwee...

I hope I can help you with your question. I was on very high doses of ametriptylene for about 7 years, so it was quite difficult for me to stop taking it...I was well and truly dependent on it. The side effects weren't too bad at the beginning, but as years went by, they got so bad that I couldn't tolerate them any more. I will say that at the beginning (not later on) the pain was helped because I did get plenty of sleep (too much maybe..and at the wrong times!)

The side effects can be many and varied; I had constantly dry eyes, throat and mouth, permanent very painful mouth ulcers, dizziness, always tired, itchiness all over especially at night, short term memory loss, (although that could have been for a variety of reasons)problems breathing especially at night, I put on loads of weight and the final straw was palpitations and irregular heart beat. I felt sooo tired all the time, and the BPI pain seemed to actually get worse after a few years of taking it.

PLEASE don't let this list scare you tho; remember, I took this stuff in very high doses for a long while.

When I decided enough was enough, I just stopped taking it one night. After 48 hours without it, I was climbing the walls...shivery, jittery and the most terrible nightmares and bad dreams. I couldn't sleep properly at all, so I went back on them, then tried it the sensible way; cut them out slowly.

I reduced the dose by cutting one of the 3 25mg pills in half and taking it with the rest every night until I felt ok, then I'd just take 2 and so on like that until I was literally taking about 1 quarter of a 10mg pill every night...finally, I didn't take anything.

It took me over a year to fully come off them this way; sometimes, each reduction would be weeks before I felt well enough to reduce it further. After the drug was finally out of my system, about 3 months after taking the last tiny bits, the pain actually decreased by a significant amount, which quite honestly, I DIDN'T expect. I know now that this is quite common amongst us TBPI; kicking all the drugs, or never taking any to start with seems to help reduce the pain far more effectively and quicker than actually taking them.

Please don't worry too much about the amount of ametriptylene your Dad is taking, but just be aware of the side effects. I have never taken neurontin, although they keep trying to give it to me, so I don't know what side effects this drug has...I have heard that there are relatively few. If your Dad does want to come off these drugs at anytime in the future, I strongly advise him to do it slowly over time so the body can adjust...don't stop suddenly! The Drs almost always never tell you this...but it is (in my experience and opinion)much safer to do it gradually.

Always let the Dr know when he wants to come off the drugs; some Drs will be horrified and try to persuade him to carry on, but if he truly feels they are doing more harm than good, then discuss it further with them. My own Dr was quite happy to support me in my decision luckily. I think in the end he was happy that I had taken control of the injury.

Your Dad is still in the early days, and the Drs are doing the best they can by giving him this combination of drugs. They can be very effective in some people in controlling the pain and allowing for a good nights sleep.

Sorry for the very long post! My very best wishes to you and your Dad...feel free to email me liz@tbpi-group.org if I can help in any way...

Warmest regards
Lizzy B

Ok, I think I'm off the Amitriptyline. The Pharmacist said a week off at the low dose(10mg)I was onshould do it. I was a bit phased-out/dizzy coming off it but bearable. Although my bpi pain has come back with a vengeance. Now I remember why I started the Amytriptyline.
I received my DLPA. I'm from UK and ordered from www.Westons.com. The pills are 375mg dlpa + 50mg vit C + 2mg B6. Reseach says you need B6 and C to help the dlpa. The pills say up to 5 a day. I'm measuring my bp at moment because it says it can heighten it.
I'll let you know how I get on.
Please if anyone else, apart from above have used this, please let us know your dosage and feelings regarding it's use.
Kim