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Trigeminal neuralgia changing side after remission

Posted , 5 users are following.

janine34099
janine34099

I have had 18 wonderful months in remission from TN during which time I have been off the meds.

2 weeks ago I had my first fresh attack but it was at the right side of my face. All previous attacks have been left sided. (I have suffered intermittently since 2011 and was diagnosed in 2014).

Over the last 2 weeks I have been experiencing more attacks (up to 8 per day). However most are more painful than ever before, particularly as they are lasting 20 minutes and afterwards leaving a dull ache and making me feeling exhausted.

I have not restarted the meds. Previously I was on Carbamezepine and Pregabalin. My consultant suggested for future flare ups I try oxycarbamazepine due to side affects I suffered from.

Does anyone share my history of symptoms changing after remission?

Also does anyone know if I restart meds now to try and control is there a chance I could stop the attacks sooner and be back in remission?

Finally are there any other suggestions to prevent attacks or cope with pain before going back onto meds? I find eating and sensitivity to hot and cold worst triggers at the moment but attacks are happening during the night too.

Thanks for any help.

Janine

1 like, 15 replies

15 Replies

  • cathleen38205
    cathleen38205 janine34099

    Posted

    Wow, first I want to say hi! I'm from Illinois where are you from. I'm a 57 female who pretty much falls in the same mold. Not exact but shift the years forward by a year and go from there. How about you?

    Cathy

    • janine34099
      janine34099 cathleen38205

      Posted

      Hi Cathy. Sorry for the late reply and to hear you suffer from this terrible disease too. I am from Yorkshire in England. I started my symptoms after a complicated child birth when I was 39 in 2011. However diagnosis was several years later.

      I have gone through no end of tests and consultations with neurologists. However I apparently have symptoms of Trigeminal neuropathy too so still inconclusive definitive answers.

      What are your symptoms and how have they manifested over the years?

      Janine x

    • cathleen38205
      cathleen38205 janine34099

      Posted

      Hi , my symptoms are stabbing electric shock feelings in my left side jaw area.

      At this time they seem to have subsided but 3 weeks ago they were horrible.

      At the time of being horrible when I would talk at length my face chin area.would feel like it was burning.

      I explain to my friends it's like a lightening storm in my mouth and you never know where the next bolt will hit.

      I don't take drugs for it , I believe the side effects would out way the pain . I hope to become adaptive to it or find the way to break the pain feedback path.

      It's interesting that they connect this to a child birth. How do you think it is connected?

    • janine34099
      janine34099 cathleen38205

      Posted

      Such a true description. Sometimes I feel a fraud because I can feel wonderful one minute then brought to my knees in pain the next and without warning.

      Like you I stay away from drugs as much as possible due to side affects.

      I think trauma at child birth and puncturing my spine with the spinal injection is what set off the pain but I have no proof.

      I feel I get more comfort and support from these wonderful forums than any hospital consultation.

      Wishing you a continued pain free day x

    • marlene36342
      marlene36342 cathleen38205

      Posted

      Hi Cathleen - read your post.  I also had electrical shocks (that's the best way I can explain them) in my right jaw area.  The shocks would just come out of nowhere and bring tears to my eyes.  Just horrific.  I had MVD brain surgery in Nov 2009 and since the surgery no electricial shocks.  The surgery was, unfortunately, unsuccessful.  Hope this little bit of information helps.  Please let me know if you have any more questions.

  • marlene36342
    marlene36342 janine34099

    Posted

    Janine  I have suffered with TN since 2006.  Am so sorry to know that it has once again came.  I do not really have any advise to offer because my pain is constant and never ending.  I can relate to what you are experiencing with eating and hot and cold.  My diet is very soft foods and all drinks are through a straw.  Wishing you relief with pain-free days once again.
    • janine34099
      janine34099 marlene36342

      Posted

      Hi Marlene. Sorry for the late reply and to hear you suffer from this terrible disease too. I cannot begin to imagine how much you suffer if your pain is constant. I feel guilty moaning about myself. After reading your reply I now realise how lucky I have been to have periods of remission.

      I sincerely wish you all the best dealing with this disease.

      Janine x

    • marlene36342
      marlene36342 janine34099

      Posted

      Hi Janine - thank you so very much for your reply - really helps to know that I do have this wonderful group.  I just replied to one of your posts.  Wishing you a wonderful and peaceful day.
    • monica_62807
      monica_62807 marlene36342

      Posted

      My symptoms are identical to yours 

      I have never taken any medication

      10 days ago pain return but this time hit upper jaw and lower left jaw same time attacks stabbing burning a full minute with only two minutes no pain then one minute of pain .. I was giving up but then I ordered Painshield a miracle it ended I can eat anything. The next day after using Painshield for 7 hours at night the pain was 60-70 % better then did 7  more hours and next day O PAIN ALL GONE ! Eating again no straws  try Painshield a patch you place on the jaw where pain is at night . It's a miracle it's expensive but well worth it if pain comes back just do patch 7 hours again 

  • patyrod
    patyrod janine34099

    Posted

    Wow, the changing sides is frightening.  That might imply damage to the trigeminal nerve.  Usually, trigeminal neuralgia is caused by something compressing the nerve, isn't it?  I have bilateral trigeminal neuropathy.  Both sides of my face, scalp, chin and inside of my mouth and nose have been numb for 1 1/2 years.  I also get intermittent pains on both sides.  Mine is caused by inflammation of the trigeminal nerve, rather than compression.  The inflammation is supposedly caused by an autoimmune disease.  I think you should get a new MRI because of the involvement of the other side.

    • janine34099
      janine34099 patyrod

      Posted

      Hi . Sorry for the late reply and to hear you suffer from these terrible nerve problems too.

      I have gone through no end of tests and consultations with neurologists. However I apparently have symptoms of Trigeminal neuropathy too so still inconclusive definitive answers.

      I am so sorry to hear about your numbness lasting so long. I experienced numbness all down the left side where the TN pain was. It was more like a heaviness and discomfort rather than pain. The numbness was also intermittent. These symptoms havent resurrected themselves since coming out of remission so fingers crossed.

      I've had many MRis but no compression identified. I appreciate your suggestion to get another on the other side but I'm reluctant as I would have to register as a complete new case due to discharging myself. I didn't agree with my consultant's decision to remain on medication for preventative reasons when in remission and pain free. As you can imagine she was not pleased that I rejected her advice (though I did it respectfully).

      Have you had MRis? How did they diagnose you?

      Janine x

    • marlene36342
      marlene36342 janine34099

      Posted

      Hi zjanine - read your post.  I was diagnosed in 2006 with TN.  I had an MRI done but ws told by my family physician that the MRI would not show nerve problems.  She was right - the MRI came back negative.  It wasn't until I spoke with a brain surgeon and answered his questions,then was told MVD was the surgery I needed.  Sure hope this gives you a little insight.  Wishing you nothing more than pain-free days.

    • patyrod
      patyrod janine34099

      Posted

      Yes, I had an MRI and an MRA.  The MRA showed that my trigeminal nerve is inflamed, not compressed.  My blood test showed that I have an autoimmune factor.  Since I came down with rheumatoid disease 6 months after the trigeminal neuropathy started, that seemed to confirm an autoimmune cause.  However, the rheumatologist can't be 100% certain because I have had Raynaud's Disease for 50 years and I discovered vitiligo 4 years ago, so the autoimmune factor could be refering to those conditions.  I have had several diagnoses for my plethora of symptoms.  They can't really pin me down to one disease like MS, lupus or Lyme Disease, so for now my diagnosis is Connective Tissue Disorder.

      It seems that your disease is progressing, so shouldn't they give you another MRI or MRA?  Also, did they test you for an autoimmune factor?

  • monica_62807
    monica_62807 janine34099

    Posted

    Try Painshield a patch you wear with ultrasonic waves for 7 hours at night 

    I tried after episode with TN thst attached from 10pm - 7am non stop severe pain coming e Rey two minutes lasting one full minute with a two minute break I take no meds but I was going to start when I found out about Painshield. It's expensive device but the day I got it I used 7 hours as instructed and thst morning pain 50-60 % better than that night 7  more hours and next day pain free eating and drinking without straw.  Order Painshield 

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