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This Sucks

Posted , 8 users are following.

greg66242
greg66242

I have been on Lamotrigine 250mg ER, with 25mg IR kickers(maxed out at 400mg) when needed for months on end. All of a suddden everything stops. I think they have all ran their course with me. I have run the gammet on meds:from Carbamazepine, Oxcarbazeoine, Gabapentine, Keppra, Amitriptyline, Baclofen, and Clonazepam. All  at maximum dosages. I have even tried "cocktails with meds". Mixing them. I am praying that he will prescribe Topomax next. If anybody has had any luck with any others, please let me know.Thanks for listening...sorry for the rage! Oh, daughter says "No Worries". If she only knew what the---- we  are up against. Ok, now I am done.

God Bless,

Greg

 

0 likes, 8 replies

8 Replies

  • dona40912
    dona40912 greg66242

    Posted

    I am sorry that your daughter doesn't understand your pain. Do you have anybody else who understands what you are going thru and supports you?

    I have also tried a lot of medications and nothing has helped me 100%. At the moment I am on a lot of medications for TN plus opioids. Opioids are the only ones that help me to take the edge off. I am taking something called OxyContin. Have you tried opioids?

    I have read that some people visit pain clinics where they get mixture of different pills. Have you tried pain clinic?

    Have you thought about any other option like MVD operation, botox, .....?

    • greg66242
      greg66242 dona40912

      Posted

      Thank you so much for your reply. I am seeing a counselor every 2 weeks and I use her for a sounding board. Ok for a very short period of time...time that I am talking to her.

      As for a MVD, well, had it done and it failed miserably. Now I have what is called "anethesia dolorosa", pain over numbness. Who would know? Ahh, an apiphany. The Neurosurgeon would. I had to find out from the internet and the Oral and Facial Pain Doctor. So I go back and politely ask him about it, and he says it is just another name for TN. REALLY? So, I politely left. My fault for not doing enough research...FIRST.

      Before this disaster, I had Stereotactic Radiosurgery with radiation used. It was a total disaster. So here I sit with total oral and facial numbness and pain with TN creeping through when it wants to. Oh, the statistics they gave me were from...I have not figured that one out yet.

      There is one more option left for me to explore. I am researching this one though. It is called Neurectomies. This one is when everything has failed. What they do is cut and remove sections of the nerves, the branches that are causing the pain. However, as you well know, branches have a tendency to grow back. Pain Again.

      Finally, they have cracked down on the use of opioids here in Arizona.

      Thank you for giving me the time to vent. No pain as I vent. Well, some.

      God Bless,

      Greg

       

    • greg66242
      greg66242 dona40912

      Posted

      I should have said I talked to my Neurologist. Must be the meds!!!

      God  Bless,

      Greg

    • dona40912
      dona40912 greg66242

      Posted

      Greg, reading your story makes me sad and brings tears in my eyes. I know how horrible is TN pain and I wish nobody should suffer it. I wish your pain would just go away. Please know that you are not alone. Me and also many other people understand what you are going through. It makes me so angry that we have to suffer like that.

      I am also seeing a psycholog to get help with my depression and anxiety. I am only 26 and I find it very difficult to live with constant pain. First 8-9 months I was deeply depressed and suicidal because of the pain, but now I try to find a way to live with it. May I ask how old are you?

      Before surgery did you have atypical TN or the normal TN? I also had MVD which failed. I have atypical TN (constant nonstop pain). Fortunately I did not have any other problems, like anasthesia dolorosa, after MVD. I have read a lot about anasthesia dolorosa and I know that all destructive treatments can end up with that. I feel that most doctors don't know about TN and can give very wrong advise. After these treatments is your pain at least little bit better now?

      I am very scared that they might stop giving me enough opioids. Right now this is the only thing that helps me at least little bit. I am in Norway and I am not sure what rules here are regarding giving opioids.

      Neurectomies-I have thought about it a lot as my last option to get help. I have also asked around and spoken with two persons who have had it. First one has cut two branches (2nd and 3rd). 2 years he had no pain, but then some of it came back and he is on pills again. Doctors offered to him to repeat the operation, but he hasn't done it yet. He has typical tn. Second one has cut the nerve behind his head, where it comes out of the brain. I think it is the same place where MVD is done. He had typical tn, but has no pain anymore. But he also has no feeling in one side of his face (he said it is better than pain).

      Do you think Botox could help you? I am plannin to try it.

      On the 16th of September I get anasthesia injection to ganglion to see does it take away the pain. Doctors said that then they are 100% sure it is trigeminal nerve. I have read that it is possible to do injection where is anasthesia mixed with steroids or something like that. And then pain relief lasts longer. Have you tried it?

  • Tnhurtsme
    Tnhurtsme greg66242

    Posted

    Topiramate made me sick for 20 days terrible for me i couldn't eat an when i did i was sick

  • Baudwalker
    Baudwalker greg66242

    Posted

    This seems to be the nature of the beast!

    What works for some is poison to others, and then the body decides to join the party and we all know the result.!

    Another good reminder that forums don't always offer solutions but they certainly are good to see what is bening used where and the specific results are usually worth knowing as well.

    GREG....if you can't vent your RAGE amongst others with similar issues then where can you do it? It is good to feel you have one up on the pain even for just a very short time.

    Keeping abreast of medication names all over the world is a task before even trying to find one or more that will work for your issues. 

    I am off for yet ANOTHER MRI next week (with contrast as well) so they can compare my head six months ago with the current picture. From here I look like having some form of super high resolution(?) concentration radio treatment (not for TN itself but for a side issue)

    I fully expect my TN to return in some form or another so I am keeping abreast of things while I wait

    Good Luck with everything GREG

    Baudy1

     

  • Valkyrie
    Valkyrie greg66242

    Posted

    Pregbalin (Lyrica)? I take mine along with Tegretol for best effect.
  • jo66572
    jo66572 greg66242

    Posted

    Hey Greg. I had acupuncture

    Last night, this helped some, but I need it

    Weekly to build up. I've been on higher strength R chelate magnesium now for two days too. So far, it has settled my TN right down to maybe one shock ever now and then. I think it's a combination of both things that have worked. Have your tried acupuncture before?

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