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Pain is winning over the meds

Posted , 11 users are following.

karen36710
karen36710

I have had TN for 9 weeks now.  My meds have been upped ever 5 -7 days since I was diagnosed.  I am currently on gabapentin 2700 mg and carbamazepine 400 mg a day.  Every time the meds are increased the pain is dulled for two days and then the pain comes back worse than ever.  Has anyone had this experience?  Any solutions?  And my meds are spaced out during the day.  And I woke up with hives this morning, but the hives have settled down....I am continuing with all my meds and just watching for the hives very carefully.

1 like, 20 replies

20 Replies

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  • Valkyrie
    Valkyrie karen36710

    Posted

    Check with your doctor. It may be possible to take some kind of medication to help if the hives start up. Benadryl is one option you might want to ask the doc about.
  • rsw
    rsw karen36710

    Posted

    Karen36710,

    You are in the early stages of TM, so you will still have to experiment on either a dose of a single drug, or a cocktail of drugs that will work for you. Tegretol works on blood level, so you have to get to the right blood level that works for you and then maintain it, that's why you have to take it regularly. It varies for everyone. For myself, for instance, Gabapentin was added when the Tegretol was no longer enough to dull the pain.

    Work with your neurologist to find the right dose or cocktail that works for you. It may take a while, but there can be relief. Just hang in there!

    • karen36710
      karen36710 rsw

      Posted

      Thank you.  I was initially started on carbamazepine but when it was increased I could not tolerate the side effects, so the doctor changed me to gabapentin.  We recently added the carbamazepine to the gabapentin and I am not sure which drug is giving me the hives...allergic reaction.  I don't know where we go from here...any ideas

      thanks

      karen

  • Tnhurtsme
    Tnhurtsme karen36710

    Posted

    Be careful i would have that look at with the hives never know or it could be something you ate gabapentin is pretty good i would try just gabapentin
    • karen36710
      karen36710 Tnhurtsme

      Posted

      I was on just gabapentin 2700 mg and had break through pain.  The doctor added carbamazepine 400 mg.  I am having a horrible night, pain in my cheek, painful to swallow or to talk, even half my tongue is painful.  The hives are there but not too itchy...I can not think of any other reason I would have the hives except the drugs.  I am not sure what to do.
    • Tnhurtsme
      Tnhurtsme karen36710

      Posted

      Oxcarbazepine makes my muscles hurt on a low does i cant stand it thats my main side effect its worst on tegretol
  • patricia_2468
    patricia_2468 karen36710

    Posted

    Hi Karen.  It can take some time to find the medication that works for you.  For me I take Lyrica and Trileptal.  Take with warm water so as not to set of the pain.  I take equally throughout 24hr period.  That means setting alarm to take during the night.  Take with warm water NOT cold.  I have also begun taking Vit B12 METHYL 500mcg daily.  It is supposed to aid in repair of myelin sheath.  Join th TN Assn in your country and get hold of the book Striking Back.  All the best
  • karen36710
    karen36710

    Posted

    I need help guys...what is the treatment for TN when you can not swallow?  This is my second day of pain in my cheek, jaw, tongue....so difficult to talk or swallow.  I barely got my morning meds in to me.
    • patricia_2468
      patricia_2468 karen36710

      Posted

      Karen, are you under a neurologist?  If not, you need to be.  In the meantime, I suggest going to a hospital emergency for some help.  If you can't speak, have it all written down, including your allerg, symptoms, meds you are on, etc.  Good luck.

    • michael64483
      michael64483 karen36710

      Posted

      Dealing with TN for 19 years. Several times reached point where I could not swallow anything, even my own spit. So pills were not able to be used.At an  ER recently a Doc put a fentanyl pain patch on my arm , they come in different strenghts, it is a narcotic pain patch and enabled me to swallow within hours though still had very moderate pain when swallowing. Got a prescrip for these pain patches and swallowing pills daily while I await PSR surgery next week
  • susan33651
    susan33651 karen36710

    Posted

    Hi, Karen

    I too have had hives on and off since starting Carbamazepine in April, BUT I have had them before accompanied by angiodema of my feet, hands, torso and sometimes my face, and again BUT that was long before starting any medication for any reason! I also had a variety of other rashes at the same time too. My GP referred me to a Dermatologist who suspects they are autoimmune related.

    Make sure you tell your doctor and get appropriate treatment such as Loratadine. Carbamazepine is notorious for inducing this reaction. If the hives recur and they are intensely itchy or burning they may well be unrelated to the Carbamazepine, hence the advice to tell your GP.

    Best wishes.

  • greg66242
    greg66242 karen36710

    Posted

    Hello Karen, Oh crap, another victim for the "monster". Humor sometimes work as a mindfulness tool to cope with this. Anyway, PLEASE stay with medications, whatever works for you. I would advise against any procedures, whether evasive or non-evasive. Such as radiation or micro-vascular decompression, and others. I have had both done, and they failed. Does not say that they are always unsuccessful, but the side EFFECTS are HORRIBLE, and the side effects come along with the procedure anyway, even if it works. I do not mean to be the devil's advocate, but it is a war against this "monster". All the information can be found for procedures and medication on the Mayo Clinic, John Hopkins, and the American Medical Association of Facial Pain web sites. Many others also.

    I am taking  Lamotrigine ER 250 mg/day. It seems to take the edge off from the "zingers"(electrical shocks that are produced from triggers).

    Hang tough!!!

    God Bless,

    Greg

     

    • karen36710
      karen36710 greg66242

      Posted

      I am now on prednisone for 7 days then back to the doctor.  Also now have a referral to a neurosurgeon in a nearby medical centre.  I am pretty sure i am looking at a destructive procedure. I am in so much pain right now that I will try anything.  I can not eat, I can barely sip water

      karen

    • rsw
      rsw karen36710

      Posted

      Hi karen36710

      Getting in to see a neurosurgeon is a good thing. He or she will be able to explain various surgical options for you. As in anything, you MUST do your research before you commit to anything, but keep an open mind. You never know if it's the right thing for you. Microvascular Decompression or MVD has a success rate of 90%. If you're young and fit, it might be a good option for you. Yes, the recovery from this procedure isn't fun, but once you get past the 3-4 weeks of discomfort, your life may change. I had it done 3 weeks ago and I must admit the first 2 weeks were so difficult I had started to question the wisdom of doing it, but I am happy to say I am now 95% back to normal, with a significant reduction in pain.

      However, all these things--drugs, surgery, doses, etc --- all we can do is share our own experience with you. Ultimately, you and your neurologist will have to find the right path for you. This is a classic case of what works for one may not work for the other.

      I know how difficult it is, but find yourself a neurologist you can trust then together find your way out of this.

      Good luck! I pray that you and all of us who suffer from this will find a way to get our lives back.

    • greg66242
      greg66242 rsw

      Posted

      Hello rsw,

      Please define young and fit. I had MVD 15 months ago and it was a complete failure. I have complete Oral and Facial numbness on side of surgery, and on top of that, "anethesia dolorosa". Pain on top of numbness from surgery. If you have any side effects, please let me know. I was 58 and in great shape.

      God Bless,

      Greg

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