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Bad week

Posted , 6 users are following.

susan33651
susan33651

Really suffering. Since Tuesday I've had pain all day every day, I wake up in the early hours go for a pee (too much info, sorry 😔wink as soon as I get back in bed pain hits. At the moment my right cheek is so bad, all night since about 4 it's been like a sledgehammer whacking it. Nothing helps. Having cuddles with my elderly cat, doesn't help much either but it's comforting 🤗🐱. Thank goodness for predictive text! My brain is mush right now.

Seeking mental hugs ??

1 like, 13 replies

13 Replies

  • susan33651
    susan33651

    Posted

    I should add that there are a few minutes here and there when there's no pain, sometimes nearly an hour, but the b'stard won't give me a break😣😤!

  • guadalupe43996
    guadalupe43996 susan33651

    Posted

    I'm sorry you are hurting it's always a good idea to have your doctor request MRI to verify it's Trigeminal Neuralgia they will then figure out what to do from there prayers for you to feel better i have had trigeminal Neuralgia for 4 years now and its very painful i take Carbamazepine along with baclofen it's not quick relief but that's the options i have that's why it's very important to get seen by neurologist.

    • susan33651
      susan33651 guadalupe43996

      Posted

      Thanks, been on Carbamazepine (1400mg per day) and Amitriptyline (70mg per day) for almost two years, still trying to get the dose right, also got oramorph, co-codamol and Tramadol. Also take Ibuprofen and use hot water bottle, this mix only really helps with lower two branches. Ophthalmic branch nearly kills me the pain is so hideous.

      Had MRI with and without contrast, inconclusive. Neurologist said continue with Carbamazepine for now. It's only in the last week or so that it's got so much worse, especially on the right (I have bilateral TN in all three branches 😤😢😢wink. I also get migraine on the left side, often during TN attacks!!

      I've got a good support system at home and work, as well as a truly brilliant GP. I've had this for about 12-14 years but only sought medical help when I ran out of the pain killers that dented the pain (used hubby's drugs for dental abscess and back problems🙄wink and the pain got worse, more frequent and impossible to deal with.

      Thanks again for the reply and your support ??

  • geoffrey35113
    geoffrey35113 susan33651

    Posted

    Trigeminal neuralgia is caused by the nerve in your head. I had this for years until having balloon procedure which involves placing a wire through your cheek up into the brain and pushing the trigeminal nerve away from the the other nerve with a small inflatable balloon. Quite a tricky procedure and can leave the the face numb for a while    Contact a specialist and discuss balloon procedure. I am completely pain free after years of agony and huge amounts of Tegretol. My specialist is in Melbourne. Doctor Danks.
    • susan33651
      susan33651 geoffrey35113

      Posted

      Hi,

      And thanks for your reply, I've written a detailed reply to guadalupe.

      I don't know the cause of my TN despite MRIs. The Carbamazepine has helped but it feels like I'm constantly playing 'catch up'!

      Feel a lot better today ??

      Thanks again!

  • Notrightnow
    Notrightnow susan33651

    Posted

    You didn't mention what brought on your neuralgia.  

    I do not know if this would help or not but I always sleep with an ice pack next to me. I keep a big bowl of ice water in the kitchen sink to help me during my episodes  

     I find that if I work out every day and keep alcohol and junk food out of my diet that the neuralgia is less.  

     I've found that when I have junk food and drink wine and I'm being sedentary, the neuralgia gets worse.  

    I have also felt like hot humid days make it worse.    I'm taking amitriptyline to help for treatment.  Last summer, I had episodes that were so severe that ice packs and ice water did not help.   On some days, if I'm applying Lidocaine to get rid of the discomfort, it actually sparks off an attack  and on some other days, I can't seem to spark one off even if I try.   

     

    • susan33651
      susan33651 Notrightnow

      Posted

      Hi,

      And thanks for the reply. I've written detailed replies to Geoffrey and guadalupe.

      I have cut down on sugary food and try to do more, however, I also have an autoimmune problem which affects my joints and often leaves me in a great deal of pain too.

      Hot water bottles rather than ice works best for me.

      Thanks again.

  • rachel83222
    rachel83222 susan33651

    Posted

    Hi go to the doctors for medicine that’s the only thing that will stop it. 
    • susan33651
      susan33651 rachel83222

      Posted

      Hi,

      Been to docs and got medication. It's got worse in the last week or so. Planning to see GP in the week.

      Thanks for your reply.

    • geoffrey35113
      geoffrey35113 rachel83222

      Posted

      Wrong. The only way to stop the pain is an operation. Bite the bullet and get a neurologist who can carry out balloon or other types of operations. I can tell you from experience there are so many  so called specialists who will not carry out surgery. They rather sit back, prescribe mind altering drugs, and not get involved. I had to visit 4 specialists until I found one who had enough expertise to operate. My surgeon was in Melbourne Australia; Doctor Danks Monash Medical Centre and for the past three years have been pain free. Before that, apart from huge amounts of Tegretol, I tried every type of alternative medics available including meditation and needle therapy, all no use. Have an operation. It’s the only answer.
  • ernestine_93088
    ernestine_93088 susan33651

    Posted

    Sorry for your pain, praying this pain episode ends soon. Are you taking any meds.? 
    • susan33651
      susan33651 ernestine_93088

      Posted

      Hi,

      Yes, got lots just no longer as effective 😢. Seeing GP in the week so should get some help. 😊

      Thanks for your reply.

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