1. Community
  2. Brain and nerves
  3. Trigeminal Neuralgia

trigeminal neuralgia.....confused !!!

Posted , 4 users are following.

helen67943
helen67943

Hi, I have recently been diagnosed with trigeminal neuralgia. Firstly my GP thought it was hayfever, or an allergy, I had symptoms which pointed to sinus issues and was finally refered to ENT. Had a nasal endoscopy and nothing found so the specialist said it was a trapped cranial nerve and has given me Amitriptyline to take. I have electric shock type pain which runs up behind my right ear followed by aggressive head aches (I class them as migraines) which make me feel sick, last for hours and make me feel out of sorts for a few days. Last one was Saturday from 4am to 1pm, in addition to the headache my left arm went dead, tingles and double vision. When do I go back to my GP ? Only been on the tablets for a month. Very tired all the time, stressful job not helping.

0 likes, 8 replies

8 Replies

  • richardvilla
    richardvilla helen67943

    Posted

    Hi Helen

    Really strange this. Im still in complete limbo whether I have this or not. 

    Last year (from april) I had bad sinus issues which felt like severe hayfever. As the symptoms cleared a bit with my nise i was left with aching gums and teeth felt especailly at night whilst lying down. The pain felt like my teeth been pulled out without the anasthtic. This was from July 2015 and still have it now. My ears feel constantly inflamed, and theres slight tingling top left of head at times. GP is treating me for TN with amitripyine, i have had a scan of my sinus which are clear. Still waiting my follow up appointment. 

    Im torn between TN, or tmj as i do grit my teeth and they bleed. 

    Its the not knowing thats the worse!

    • helen67943
      helen67943 richardvilla

      Posted

      Hi, very similar to myself then as I have suffered with TMJ for approx 7 years, I get numb teeth, aching jaw etc. I haven't had a scan but a camera which again said sinuses were clear. Let me know how you get on x

    • helen67943
      helen67943 richardvilla

      Posted

      My doc said my TN and TMJ are related, I had an Mri scan for my TMJ 5 years ago just when my symptoms for TN were appearing. I feel like a hypochondriac moaning all the time to a GP who clearly doesn't want to know.

      When do you moan enough to get something done ?

  • Baudwalker
    Baudwalker helen67943

    Posted

    First If it were me I would not get a diagnosis from any forum or others that may be suffering from the same issues.

    That is the job of your GP and any specialists he may refer you to. Your job is RESEARCH, RESEARCH and more RESEARCH. Gather what you can from as many sites as you can and then drive your GP to gather the same information.

    Be firm but demanding and ask what experience he has with the TN and other similar issues. They have been chasing mine for two years and last Friday they finally identified a cancer of the PAROTID gland. This is one of the saliva glands in the side of the face just near the ear. The same nerves that are usually the cause of this issue go through this gland and can cause the the same problem.

    I have had similar issues as you but on ther left side. Shooting pains and extreme headaches centered around the left eye that were crippling.

    I take Lyrica for the pain and oxcarbamazipine for the shooting pains. I also have oromorph for when the pain just won't stop. It is an oral morphine I use when needed.

    Here again DRIVE your GP to look at suitable medication for you. I was lucky as my GP started on high doses and dropped them when possible instead of the low dose and increasing when HE decides. I explained to him is very good Australian English (including expletives) that is was ME suffering and not him so lets kill the pain and then explore ther alternatives instead of taking months to get it right.

    Be careful of the side effects and the fact that what suits one person could have nasty side effects on others. There is NO 'one fits all' solution for this.

    Good Luck

    • helen67943
      helen67943 Baudwalker

      Posted

      My word, sorry to hear about your diagnosis. I don't have much faith in my GP so I am going to ask to see the others ones. The "what do you want me to do about it" attitude doesn't help.....yes she actually said that to me !!! I'll push hard and start documenting every attack so I have something solid to go with. Thanks for your advise. Hope all goes well x

  • susan33651
    susan33651 helen67943

    Posted

    Hi, Helen,

    I am a qualified nurse with almost 30 years experience (a few months till 30 years!), my main area of expertise is ENT nursing and I have to say I am more than a little surprised that your experience has been dealt with by ENT. I would be more than a little concerned about the numbness and tingling in your arm in addition to the blurred/double vision. I advise you to go back to your GP and insist on a referral to a Neurologist. Don't be fobbed off! Insist, and as Baudwalker says - Research till you know equally as much about your condition as the GP!

    I am very fortunate in having three very good GPs at my surgery, and the one I see most often (I plan to move in as it will save me the time in making visits!) is exceptionally good. I am frankly shocked at the level of poor service many forum members experience with the NHS, or their GPs for those living elsewhere. You have my sympathy.

    Persist with finding an answer to your problems.

    Best wishes.

    • helen67943
      helen67943 susan33651

      Posted

      Thanks Susan, I think I was referred to ENT as it was suspected sinus issues or allergies, ENT didn't refer me on and told me to take the tablets for 2 months to see how I get on. I have to admit I forgot to take for two days then had this massive attack, I'll finish my next pack and leave it a few days to see if it happens again and will go straight back to the GP if I have issues after or during. Thanks for your advice x

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.