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My TN just gave me a nasty jolt!

Posted , 4 users are following.

Glor888
Glor888

Hi,

As some of you may already know my history you will be aware that my TN has returned. I started off on 25mg of Lyrica twice a day and I am now on 50mg twice a day.

I just started to eat my cereals when I had this nasty electric jolt, that's the only way I can explain it, I felt it right from my right lower tooth, along my lower cheek and right into my right ear. I even felt in in my lower jaw. It lasted 3 minutes and brought me to tears. It's been a long time since I had it as bad as that. It stung like hell! I was ok until I took my first mouthful of food.

I'm quite happy being on a 50mg dosage, but if this keeps up I'll have to increase to 75mg. I can't remember the full dosage, but I hope I don't have to go that far.

Did any of you find that your TN bout came on just by eating food?

Kind regards

Gloriana

1 like, 14 replies

14 Replies

  • Valkyrie
    Valkyrie Glor888

    Posted

    Eating food is a common trigger with me. I take 450mg Lyrica a day plus 1000 mg Tegretol so I envy you for your low dose. I know what you mean by the electric jolt right across the jaw to the ear as well. Its frightening as you are not sure it is going to end at all. For some weird reason mine will go away quicker if I lie on my right side but with my head only gently resting on the pillow so it doesnt put any pressure on my jaw to carry to the Tn side (left). I am sad for you. I hope its a one-off.
    • Glor888
      Glor888 Valkyrie

      Posted

      Thank you Valkyrie.

      Do you have to take both medications Valkyrie? Can't you take just Tegretol? I wish I could go back on Tegretol, at least it used to numb the pain a lot earlier. I'm just waiting for Saturday so I can increase to 75mg. I just had another two bouts this morning, the last one was like stinging nettles to my face.

      I do what you do with your head only I just tilt mine to the left, it seems to ease it a bit. I hate it because I have to eat gingerly at mealtimes in case I get another jolt. 

      I wish it to be a one off, but I know this is it for a few months now, especially by the way it started off last Friday with the minor twinges. I think what I may do is keep the medication going for the nine months and when I'm certain there is no twinges hovering I will stop. Hopefully I will have a longer remission then, but we'll see.

  • eddie13
    eddie13 Glor888

    Posted

    Gloriana56563,

    I've been there. The no idea something is coming until you put something in your mouth. And sometimes, omg, others can not imagine how outrageously painful it is. 

    My savior has been Tegretol generic Carbamazepine. And now the ER extended release variation is even better. I get few pains, a bad one only once a year or so. And that is for a few seconds only. I am not bothered by any side effects, so when something happens, I take an extra pill. I'm on 4 x 200mg per day. I've found spacing evenly through the day very important, so it's a pill every 6 hours - as close as possible. I use alarms on my phone.

    Hope your Neurologist is able to clear up your situation soon.

    eddie13

    • Glor888
      Glor888 eddie13

      Posted

      Thank you Eddie.

      Yes it is painful especially when you don't know it's going to turn up and just zap you!

      I miss Tegretol, Lyrica is only 2nd best in my opinion. I also hate having to take them in small doses weekly before you can increase them. I've often phoned my Dr and asked if there is anything else I can take to numb the pain, his response, Paracetomol. It doesn't help at all.

      I guess I'll just have to grin and bear it until I'm on the full dosage.

      Ive already been to see a Neurologist and unfortunately there was nothing she could do only make suggestions to my GP which medications to try.

      Eddie, I have to show my ignorance here, what is the ER?

       

    • Valkyrie
      Valkyrie Glor888

      Posted

      Gloriana, I have codeine phosphate 30mg in a tablet with paracetamol. It works okay to dull the pain but makes me fall asleep so not good at work.
  • heather30609
    heather30609 Glor888

    Posted

    Hi Gloriana, I've just been lucky enough to have had 4 or 5 months pain free, and medication free.  I was on 150mg Lyrica twice a day - taking it at precisely 12 hour intervals to maintain a constant level in my blood.  I had no break through symptoms for 2 months so agreed with my doctor to reduce the dose, which we did at weekly intervals from 150 - 100 - 50 - 25mg and then stopped.  Unfortunately the symptoms have returned gradually over the last month and I've restarted the medication from last week on 25 mg twice a day but now taking 100mg twice a day but in real pain this evening so I guess I'll need to be back on 150. sad I know it is the nature of TN to come and go with no particular reason so am learning to live with it - for me the important thing is to understand that and have control over my medication (with guidance and support from doctor).  The way I relieve the pain is by opening my mouth really wide and gently massaging the hinge of my jaw area - seems to relax things.  You may know the painting called 'The Scream' - I think that model must have had TN!
    • Glor888
      Glor888 heather30609

      Posted

      Thank you Heather.

      My remission only lasted 4-5 months this time too. I personally think that Lyrica, not being as strong as Tegretol, doesn't stay in the blood stream as long, consequently remissions are shorter. That's why I will make sure this time around that I complete 9 months before I start to wean off them, hopefully to find its gone.

      Have you tried Tegretol?

      The Scream, Pmsl Heather, that's so funny. I must try that.

    • heather30609
      heather30609 Glor888

      Posted

      Gloriana - I've not tried any other medication as Lyrica has done the trick in the past.  I really don't like taking medication for any length of time so the milder the better for me.  I'm seeing my GP tomorrow to discuss how best I can manage it and whether it would be better to gradually increase the dose as I did this time, or to go straight to 150mg.  Heather
    • Valkyrie
      Valkyrie heather30609

      Posted

      I am off to my neurologist again on 16th and will be asking him about Neurontin (gabapentin) because I read on the Australian forum that it may work better than Lyrica. Dont like to bash the medical profession but this guy doesnt seem to know a lot so I may end up just asking him for it and experiment on myself yet again. Guinea Pig, that's me.
  • heather30609
    heather30609 Glor888

    Posted

    Thanks for asking Gloriana, she prescribed the 150 mg pregabalin for me and advised I take it for a month before considering reducing again.  Got a follow up appointment then. 
    • Glor888
      Glor888 heather30609

      Posted

      Hi,

      So, when you increase 50mg straight to 150mg do you not get any side effects?

      One of my Dr's at the surgery said I could increase from 50mg straight to 100mg. I didn't necessarily have to increase only 25mg. So I did that last night and I felt weasy, wobbly legs, very drowsy, generally not feeling too good. So I went to bed at 10pm, up to the toilet at 1am and woke up at 7am. I felt I had a really heavy sleep, and I'm usually a light sleeper that only needs between 6&1/2-7hrs sleep.

      I was ok when I got up this morning so I took the next dosage of 100mg and I had an awful day. I felt the same as last night, only this time I was short of breath, felt I was going to pass out and dizzy. I had to cut short my trip to town.

      So this evening I phoned 111 to get some medical advice in my prescribed tablets and the dosage. I gave the girl all my info and a pharmacist is going to phone me back.

      Evidently big jumps do not agree with me. I will have to keep to 25mg by the looks of it. I'm not particularly happy with this because last year it took eight weeks before I was pain free with a dosage of 200mg. 

  • heather30609
    heather30609 Glor888

    Posted

    Valkyrie,  just to let you know that Gabapentin is the generic name whereas Lyrica is the trade name - so the neurontin you mention will be the same make up as lyrica.  Some people do find differences in tablets due to slightly different powders used etc. but the essential medication should be exactly the same.  Interestingly, I've been given Pregabalin Teva which is yet another brand name - be interesting to see how I get on with that.
    • Valkyrie
      Valkyrie heather30609

      Posted

      Hey, thanks for that info. I must be careful when I go to see the Neurologist not to ask for the same thing I already have just under another name. My plan is to say what I am taking doesnt agree with me and ask for his suggestions and see what he says first. I think his suggestion will be an MVD as that was his only reply last time. I think he may be a one trick pony.
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