Anyone else had no pain relief for TN after 5 different medications?

Posted , 4 users are following.

Hi, I just thought I would ask if anyone else here has had no pain relief even after being prescribed different types of medication over a period of months.

The last prescribed medication I have been given is Pregabalin. I started off on 25mg twice a day and increased weekly until I reached 75mg. This is where I finally noticed it worked without any pain still. This lasted for about 3 weeks and now the pain is back. I've increased to 100mg twice a day and so far no pain relief. On Tuesday I will increase to 125mg for a week and so on. The maximum is 150mg twice a day.

I have an appointment to see the Neurologist in January.

What I don't understand is how medication can work only temporarily. The Dr did explain but all this is very confusing.

The first lot of medication, Tegretol, which also worked well in the past, didn't work this time around and caused side effects, the Dr said that was due to the Tegretol causing my low sodium level. Again why now and not the past? 

Fair enough it could be old age, but it worked well for me up until I retired at 60yrs of age. There's only a few years difference since then.

What now? Guess it depends on what options I'm offered in the way of remedies when I attend my appointment.

Regards Gloriana.

 

1 like, 10 replies

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10 Replies

  • Posted

    Wow. i sure have never heard of that before. i presume they have also tried combinations of medications. Tegretol is starting to work less well for me so they want to add just a little bit of Lyrica to top it up but i have not started that as yet. I sure hope they can give you some better help. At 60 you have a lot of living to do yet and you need to be able to do it pain free. Keep us updated Gloriana please
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    • Posted

      Hi Valkyrie.

      Thank you for your feedback. Yes my Dr did try combinations of medications, such as Tegretol and Amitriptyline, then Tegretol and Gabapentin, even the latter drug on its own. But unfortunately each combination gave me side effects.

      I think it's quite apparent nothing is working for me this time around. I'll wait and see what my Dr says on Tuesday, because I think it's pointless continuing with medication if it doesn't work. I've managed so far so I think I can stretch it a bit longer until the 5th January before I see the Neurologist and then we will see what happens then.

      I will keep you posted.

      Regards

      Gloriana

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  • Posted

    Hi Gloriana

    check out your specialist, find out how good they are and, if necessary,  pay for a one-off session with the top person in the field that's available to you.

    The next piece of advice you get needs to be right, so do everything you can to reach the people that have the skill and expertise to make the correct diagnosis and recommend the right drug regime for you. Colin 

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    • Posted

      Hi Colin,

      Thank you for your feedback.

      As I will be talking to my Dr on Tuesday I can check with him who the specialist is and seek the information out as you have suggested. But as for paying for the top person unfortunately that will not be in my budget as a pensioner. I will also check everything out as you have so kindly suggested. Thank you.

      I will keep you posted.

      Regards

      Gloriana

       

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  • Posted

    I HAVE heard of that because the meds don't work for me either.  I have grown to hate the meds because they don't work!  I say "forget the meds and get your doctor to refer you to whoever the TN surgeon is in town and go there.  There are a number of kinds depending on your situation.  Research it.  I got radio thermal frequency surgery and the pain is gone and I no drugs!  Now, it still often comes back after surgery BUT not for a long time and then you just do it again.  In other words, you are done with the pain and the drugs.  I researched and found the TN surgeon for my area. He has done tons of these surgeries so knows what he is doing.  There are several to choose from unless you have MS, then the one I had seems to be the best.

    I say, get off the drug parade and get one of the surgeries.  Warning, for some reason (drug company hold on docs?) these neurologists push the drug route. Just tell your TN surgeon that the drugs don't work and he/she will get you right in and take care of it. 

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    • Posted

      Hi Alicot,

      Thank you for your feedback.

      I have researched this and I know my Dr will say continue with the drugs to the maximum just to show for the record. But I am prepared now to say No anyway to further increases of medication because it is quite evident they don't work.

      i have an appointment with the Neurologist next month so I will keep that to see what he/she recommends. I know it is possible to have one of the operations so we will have to see.

      Regards

      Gloriana

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  • Posted

    Hi Gloriana

    I fully appreciate the financial constraints - I'm in a similar position to you!

    However, sometimes it pays to have a one-off consultation, to ensure you are getting the best advice. There is no reason to think that the person you're seeing next week isn't capable of giving that but it's good to know that you can challenge decisions, if you feel the need to.

    I can't comment on the surgical option versus drugs, as another friend has suggested, but this is where you need to trust your consultant and respect his advice or be prepared to have a second opinion.

    i do hope your visit next week proves helpful and positive and yes,  please let us know the outcome. Best wishes Colin

     

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  • Posted

    Hi,

    This is just to let you know that I spoke to the Dr this morning regarding my medication. I was under the notion that .25mg of Pregabalin was to be, titrated as the Dr called it, given gradually up to the maximum of 300mg per day. He has informed me that it can be increased to 600mg per day.

    I informed him that 75mg of Pregabalin worked for me for about 3 weeks then it failed. I did not see the point in increasing the medication if it doesnt work. He stressed that I had to keep trying up to the 600mg as it could work. I said I was due to see the Neurologist on the 5th January and would see what he/she says, but I really felt it was pointless in carrying on with the medication if it didnt work, especially after working at 75mg then it stopped.

    What concerns me is these tablets make you drowsy as it is. I'm on 125mg twice a day now and feeling really drowsy, whats it going to be like on 600mg?

    I can't believe this has been going on for 5 months and nothing has worked. Each medication I've taken and waited each time for was all for nothing. I am in a really p***** off mood. 

    At the moment I'm checking online for alternative remedies such as Homeopathy as well as checking for specialists in the area. So I will let you know what happens next month.

    Regards

    Gloriana

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    • Posted

      I must admit that when i first went on the Tegretol the doctor put me on 200mg twice a day and i was very dopey and sleepy. This lasted for about a month then i had to increase it to 300mg twice a day which is what it is now. Another two months passed with me (still going to work) unable to drive because i seemed to have a 10 second delay in my thinking. After the two months though the fog started to clear and i am now driving again (still taking 300mg twice a day) and although i wouldnt say i am totally all here again, i can work and i feel okay. I have added  Lysine which is an amino acid 1000mg twice a day) because i found it helps but it took about a month to do anything and i also use  Sensodyne toothpaste which is probably just a comfort thing but if i stop, i get small twinges of pain along the gum lines. maybe you should try what your doctor says until you see the neuro at least just to be your own guinea pig and because the neuro might ask you if you did and want you to do that before they offer anything else but indeed, searching more info online is imperative i think. We must all think about everything our doctors say and then find out as much as we can. We cant just blindly follow their advice.
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  • Posted

    Thanks for the update. We all need all the info we can get from each other. Its a strange, strange condition we share.
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