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My Appointment with the Neurologist was disappointing.

Posted , 2 users are following.

Glor888
Glor888

First of all I will state why the appointment with the Neurologist was disappointing. I was practically deaf when I attended. I caught a virus 3 weeks ago and this affected my hearing, my ears were completely blocked and I just could not hear a thing. I thought typical this would happen now when I've waited 2 months for this appointment.

Anyway, as soon as I entered the surgery I informed the Neurologist that I could not hear and she obliged by moving her chair closer to me and looking at me whilst she spoke. I tried in vain to lip read too. She had to speak up too otherwise it was impossible. She went over my history and asked me questions about my TN. She explained that the reason Tegretol (Carbamazapine) did not work for me this time around was because as you get older the medication does not work well in the blood stream. She touched my face to see if there was any sensitivity, there wasnt. Then she used some metal tongues and put that on both sides of my face and asked if the temperature was the same, it was. She asked if I was in pain, I wasnt. I had reached 175mg on Pregabalin and experienced palpitations so my GP suggested I should reduce to 150mg, when I did this I was no longer in pain and this level of medication seems to be working ok now, for the last 2 weeks anyway.

She gave me a leaflet headed 'Basic Treatment Plan for Neurogenic Pain.' This listed 4 different types of medication, as well as some other bumph, I crossed off 3 which I've either tried or already taking. That left Topiramate.

She also suggested that after being on medication for a few months I could come off my medication just to see if the pain is still there. That was it! No follow up, no suggestions of what to do if the pain comes back and the medication doesn't work etc.

I could not ask the questions I wanted to because of the lack of hearing and straining to hear really made me feel uncomfortable. I was also conscious of there being 3 students in the surgery with her. Overall I found the appointment a waste of time and couldnt wait to get out of there.

Now I just bide my time and see what happens. I will probably gradually reduce my medication weekly to see if the pain is still there, but I certainly wont just come off them. With Pregabalin you have to gradually reduce

dosage.

Regards 

Gloriana

2 likes, 12 replies

12 Replies

  • Valkyrie
    Valkyrie Glor888

    Posted

    Oh, i feel so sorry for you Gloriana. What a disapointing result. The specialist generally writes to your GP after you have the appointment. It might be worth going to see the GP and ask them some questions now.
    • Glor888
      Glor888 Valkyrie

      Posted

      Thank you Valkyrie.

      I feel seeing the Neurologist came at the wrong time really.

      I've already chatted to my GP and unfortunately I'm non the wiser.

      Not to worry though as I seem to be ok at the moment and I'm on a gradual reduction of medication, so time will tell if I'm pain free yet again.

      Regards

      Gloriana

  • maggie80535
    maggie80535 Glor888

    Posted

    Great post.So detailed. You can bet when you have a physical exam there will be no pain but at midnite when you are alone and terrified there will be spasm after spasm.
    • Glor888
      Glor888 maggie80535

      Posted

      Thank you Maggie.

      Usually when I first get the pain it starts off when Im either eating or talking, thats when I know its back. Very rare it happens at night. I guess Im one of the lucky ones.

  • maggie80535
    maggie80535 Glor888

    Posted

    It was bad luck you were not well. Usually in this case they can find another appointment in a few days for you . My gp laughed about 'come off it and see if the pain is still there,!' As if !    Keep battling,Gloriana
    • Glor888
      Glor888 maggie80535

      Posted

      Thank you Maggie. So far everything is still ok on 200mg of Pregabalin, I reduce it to 150mg on Sunday for a week. Fingers crossed the pain keeps at bay when I finally come off them. smile
  • maggie80535
    maggie80535 Glor888

    Posted

    Gloriana,I am also on Pregbalin with 150 mg am and pm.Doing ok except on getting out of bed when I nearly die from mouth attacks which I eventually stop by holding breath and standing still and upright. I took Lyrica (pregbalin in Oz) 2 hours before.So please tell me why you are taking less on Sun.Surely the pain will increase!
  • maggie80535
    maggie80535 Glor888

    Posted

    Hi Gloriana.Did the pain increase or remain the same.?
    • Glor888
      Glor888 maggie80535

      Posted

      Hi Maggie,

      i was was reducing my dosage on a Sunday by 25mg per week. The next week on Sunday I reduced it by 25mg again. Then I started feeling very tiny twinges so I didn't reduce them anymore. At the moment I'm on 150mg a day. 75mg morning and 75mg at night. I usually take them after food. So far, so good. 

      Im hoping seeing as my 9 months are up since the TN returned that the pain will have completely gone. As my history has been 9 months on and 9 months remission in the past, I won't know until I start reducing Pregabalin agin until I'm left with 25mg twice a day. But I don't want to push it. So we'll see.

      Maggie, are you still getting pain with your 300mg a day? Do you take them after food and at a regular time each day?

      Gloriana.

       

    • maggie80535
      maggie80535 Glor888

      Posted

      Hi Gloriana..Hope you are nailing it.How dare this terrible disease come spoil our lives and force us to take mind-altering medication,!.Well got that out.i made a mistake.I am on 225 mg. of pregabalin ,one every 8 hrs as Godzilla(that's my name for TN) breaks thru with 12 hourly doses.I take as soon as I remember before or after meals doesn't matter.Yes,I get mouth pain sometimes when I eat but no more electric shocks. I stay up late to get a dose done so I don't wake in pain.My neurosurgeon (who doesn't treat me for TN but recently operated on my lumbar spine)thinks dose is too high.No more info from him.I wobble around at night sometimes most unsteady but drive during day and cope well.Please tell me why you are reducing your dose. I will pray for your 9 month plan but don't bank on it.I broke my hip and TN disappeared for 2 years.Been back6 mths.Maybe a fall........Cheers Maggie 
    • Glor888
      Glor888 maggie80535

      Posted

      Hi Maggie,

      Your 225mg of Pregablin twice a day sounds a lot. When I was introduced to Pregabalin I was told you have to start off at 25mg first for a week then gradually build 25mg each week thereafter until you reach the dosage that relieves the pain. When I reached 125mg twice a day I had side effects so had to reduce back down until 75mg did the trick. 

      I started to reduce down 25mg to see if the TN had disappeared. See my new post.

      I fractured my wrist 7weeks ago but unfortunately it didn't affect my TN lol.

      Its weird how our bodies work, I still can't understand why my TN just disappeared for six yrs then returned.

      once your daily dosage settles down maybe you won't wobble around anymore. 

      Chat soon, take care.

      Gloriana

       

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