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Help avoiding triggers

Posted , 5 users are following.

sandra14940
sandra14940

Hi all

I have been suffering for about 6 weeks and was only diagnoised about 2 weeks ago. I am now on 300mg Carbamazepine. I don't have the typical symptoms as I get the pain in both sides either seperately or at the same time and have a pressure type pain in my temples between attacks, which I have to say the carbamazepine does seem to be helping to ease. My triggers are washing my hair, using the electric tooth brush and the wind or cold draughts. I have switched back to manual tooth brush which solves that trigger however I am having issues avoiding the other 2. The main one being cold draughts. When I go outside I wear my winter hats, which does get some funny looks but seems to work. So I thought I would try going back to work today, however I discovered that the air con in the hospital I work in has been my trigger as as soon as I felt it hit my head I got an attack and ended up going home without even clocking in and am now suffering from several attacks. How to I manage to avoid the cold draughts and work? I have no control over the air con either and wearing a hat is not permited as I am a receptionist. Does anyone have any advice?

Thanks in advance

1 like, 5 replies

5 Replies

  • hsisk24
    hsisk24 sandra14940

    Posted

    Does your work know you have been diagnosed with TN? If so, maybe they would let you wear a hat anyways? Avoiding triggers is extremely difficult. Once you get your medicine the right dosages the pain should go away. At least for a little bit. Before I had my MVD surgery I was on carbamazepine, baclofen, lyrica, oxycodone, and gabapentin. I hope you get your attacks under control. This condition is horrific. 
    • sandra14940
      sandra14940 hsisk24

      Posted

      Thanks, I've just called them to say I will be off for another week and asked them to refer me to occupational health. My doctor is pretty sure its what I have and has referred me to Neurology Outpatients. I just hope I'm ok to fly next week for my holiday.

  • john02420
    john02420 sandra14940

    Posted

    Hello Sandra.  Sorry to hear you've been diagnosed with TN.  Who diagnosed you and who put you on carbamazepine?  A  couple of years ago I started having burning tongue and having headaches right above my eyebrows and then started having pain in my right eye and ended up with pain in my right nostril area.  I went to a bunch of different doctors and one said I had some type of neuralgia not TN.  I was on carbamazepine for 8 or 10 months and it did me no good.  It really kept me messed up as far as balance and vision.  I told the doctor I wanted off of it since I didn't think it was doing any good.  I got off of it and in a couple on months it seemed like my pain went away.

    I had been doing good until last november with the eye and all and I went to the dentist for a cleaning and I have suffered with my teeth ever since.  They are all killing me right now.  I have been to dentists, ents gps and a neurologist and still have no answers. I went for a MRI yesterday.  It is like my mouth posture and bite are off and my teeth feel like they are in a vice.  Everything they touch  ( I swallow ) they hurt.  I don't know if it has to do with the neruligia or it is strictly a teeth problem.  I figure if the MRI doesn't show anything he will say go back to the dentist.  I was wondering if you were having any problems with your teeth.  I hope not.

    Have you talked to your doctor and has he had any advice.  My opinion of doctors and dentist right now is kind of low especially when you can't get any answers.  Hope you get better.

    • sandra14940
      sandra14940 john02420

      Posted

      Hi, mine started out as a bad ear infection that went away after a weeks treatment but left a headache where I felt I was being squeezed from the temples, it gradually got worse and then started getting sharp pains so called the dr. I got the nurse practitioner who said it was either a migraine or rebound headache from my gabapentin that I have been on for nearly a year. So they tried me sumatryptan which made me tingly all over then tried reducing my meds which just made me ache all over by which point the pain was now going down my jaw, across my teeth and felt like I had been punch in the cheeks. I finally get to see the Dr, it has been 4 weeks by this point and she goes it could be trygeminal neuralgia but its on both sides and I have this constant pressure pain in the temples which dont match but we will try on carbamazepine anyway see if it does anything. On the first week it seemed to be easing it, so she up it to 200mg by which point I get some weird side effects but the attacks were getting less then I ended up in A&E with a severe attack which I would say was a 10 on the pain scale, never felt anything like it before. They pile me full of meds, oxygen and fluids, something works and it finally eases after 4 hrs of treatment and they agree its trigeminal. The dr sends a letter to neuro for adivce as its like an 8 month waiting list just to see them. He disagrees with her cause I have it on both sides and cause of how it strated but didn't give any advice on meds my dr still thinks it is tn with atypical symptoms. So now Im in limbo land on 300mg carbarmazepine with some good days and some bad days. I do have 3 sensitive teeth on one side which it has started to effect.

      Im gutted as meant to be going to New York next week for my 30th sad

  • nik_91432
    nik_91432 sandra14940

    Posted

    Hi Sandra, my symptoms seem to be very different to yours but I have no doubt yours are no less painful. I had my first attack of TN two years ago, although I didn't realise that's what it was at the time, I thought it was related to a dental issue but all symptoms went away as suddenly as they started ( extreme sensitivity on the left side of my face from the higher mandible upwards) 

      The symptoms returned a couple of weeks ago but with the added bonus of random "zaps" that occurred without warning. In the last couple of days Ive have had  consultations with both my local GP and my dentist and they both believe I have TN but I can't get a consultation with a specialist for another two weeks, however I have trawled the Internet and I'm convinced that their suspicions are correct. 

       Luckily for me my dentist was able to prescribe Tegretol for me even though he isn't a GP, this is such a capricious condition that I don't know if it is Tegretol that has given me relief or if I'm just having a "good" day but I have had about 40 hours without the dreaded random zaps now. My face is still sensitive but I can avoid touching it and I'll settle for that believe me! I can see why this condition is dubbed the " suicide" syndrome. I have only ever experienced similar pain having a root canal procedure in a third world country whose novacaine just plain didn't work but at least I knew it was coming! 

      I'm a 50 year old single dad who is lucky enough to have pretty good medical insurance and provided I pass the fitness test I will definitely take the MVD option, there is no f...ing way I could live my life with the random zaps! In the mean time I can only say that Tegretol seems to be working in the short term but it's way to early for me to attribute my pain relief to this particular drug and from what I've read its effectiveness will reduce over time and will therefore require higher doses with the chances of unpleasant side effects ( not that I've had any so far ) increasing.

     There is some very interesting information on the internet concerning hemp based products that are 99% THC free ( the bit that gets you silly n hungry ) but full of cannabinoids that apparently have a huge potential to help with a wide variety of ailments including TN. Because they are free of THC it would appear that they are legal in most civilised countries in many different delivery forms from creams through to oils that can be ingested or vaped...Since I vape anyway I will order some for a trial.

     Happy to let you know how I go. Keep positive Sandra ??

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