Lyrica and more

Posted , 5 users are following.

I was directed to take a low dose 75mg 3 times daily. I eased into it and have made several attempts to take the 3rd daily dose but my body won't tolerate it. The two a day has given me almost total relief from the facial pain and neary all of the lip and tongue tingling discomfort as well. I still have the deep down jaw pain along with severe daily episode of tongue pain. The tongue pain is constant when it occurs and feels like the tongue is being squeezed in a vice and the jaw pain is what I compare to what a broken  bone feels like. I sometimes wonder if two or three things may be going on such as maybe a muscle disorder, and TMJ along with the TN. Do any of you have this deep down jaw pain and tongue discomfort. Oh yes and BTW the additinal  dose of Lyrica just takes over and puts me incoherent as well as causing violent,scary,criminal and evil dreams.

I would appreciate your thought's 

dick

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15 Replies

  • Posted

    Hey

    my pain was similar to yours. I had my jaws broken and realigned. The surgeon damaged the nerve bad . My tingle was from the damage and Lyrica helps alot. But had deep down bone pain. It felt like my maxillary was broken again. I started tegretol after five years and after a few days it takes to work finely it stoped. The Lyrica yes is hard to get on it has to be tapered slowly have the door try 50 or spread out the dose. Remember it's your body and don't let the dr dictate how u should feel. Lyrica will make u messed up when u start it lime u are dr u k dizzy. I take 350 day and had the same problem just if if is working why add another dose?..

    I strongly encourage u to ask about tegretol though it is number one go to for TN pain. It took my doctor s five years to do it. Unfortunately instead they did narcotics and I am talking heavy. Ibasically off but do t go down that road if u don't have to.

    I wish u luck and my heart goes out to u.

    Oh there are other options if u have TN spontaneous it could be a blood vessel on the nerve that 90% of the time can be fixed. Even If Not There Are Other Options. If u are curious I can tell u just let me know I think I over replied smile

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  • Posted

    Im sorry that the medication is affecting you so badly. I am still taking 300mg 3 x daily of Lyrica perhaps I am used to the side affects and dont notice them any more.  I had my MVD op 3 weeks ago but have to be weaned off the Lyrica but at present still on the high dose till I have seen the Neurologist in May. No pain now but that may still be the medication controlling it rather than the op.  I wont know till I come off meds. The pain I had was constant before the op uncontrolled by meds top jaw tongue and bottom jaw.  I could not talk or eat only liquids I am still waiting for its return I cannot beleive the difference it has made.  My face is numb like I have been to the dentist but that also may go in time.  We shall see.  I hope you get sorted soon. Best wishes
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  • Posted

    Hi Dick,

    My TN started with stinging/electrical feeling pain down the right side of my lower jaw and the side of my tongue. My Dr diagnosed TN straight away. She put me on Tegretol which is the best in their books, although they may try you on something else first. I didn't get any of the other symptoms you are experiencing. Have you tried the dentist just to rule out any underlying problems there may be from your other symptoms?

    Im now on Pregabalin this time around as my loyal Tegretol just didn't take this time. Apparently as you get to a pension age it just doesn't work in the blood stream. I was tried on other medication but had awful side effects. When I started Pregabalin I was put on the lowest dosage first of 25mg twice a day increasing to 125mg twice a day. But even that didn't work properly and I was still in pain. I was getting side effects from the 125mg dosage, so my Dr said I've to reduce it to 100mg twice a day. This seemed to be ok at first. Then I had no pain in between taking dosages, which I usually get, so I decided to try reducing the dosage. Now I'm on 75mg twice a day and touch wood I've no pain not even any warning signs.

    So sometimes with medication it is trial and error. But as long as you have no more pain from your TN whilst you're on the Pregablin dosage then leave your dosage as it is. If not I agree with the other post that suggested you try Tegretol. It affects people differently, for some it doesn't work, but after awhile it will settle down.

    Let us know how you get on.

     Gloriana

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  • Posted

    Hi

    I agree that medication is always trial and error.

    just some info on me, I am 33 and had damage occur at 29. I will not get into what how bad my damage is and what I went through because it is a long and horrible story but... I relaized over the past few years that medication is trial and error. orginally I was on lyrica and fentanyal sp? I have had a motor cortex stimulator implanted on my brian which is last resotrt, and that stopped working.. I did that for three years then I decided to stop the narcotics because there has to be better way. but like I said there are some things that have helped.

    since I started the tegretol I have lost the severe bone brake pain. ( I didnt know why it was not tried sooner) but I still get some BT so found that heat helps alot. A hot shower , hot yoga yes yoga. Stress is a big factor for me that triggers BT pain.

    If you have a blood vesel or vascuar component it is possible that heat can open up and take pressure off blood vessels

    I also found that I stopped having normal headaches... I call it face headache. Anyway I now take excedrine and it helps. If you have alot of post nasal drip and runny nose sometimes tylenol sinus helps. it alleviates the pressure ( I have alot of sinus issues that are from nerve damage). Also sometimes I will use heating pad or hot shower. Massage in the neck and back of head has been helpful too.

    Also I know this seems werid but learning to focus on other activites can draw your mind away from the pain... but ir took me a really long time but it can be done.smile

    There are treatments that are invasive ... if you have a blood vessel pussing on the nerve there is something called gamma radition surgery it is no cutting and out patient. You basically just sit their.

    I really think you should check out  the Trigeminal Neuralgia association web site http://fpa-support.org/treatment-options-trigeminal-neuralgia/ it can tell you about all the treatments available and medications. The first step is knowing. I have seen four different doctors and one is the top in facial pain in the us who implanted my MCS. I wont give up and I am going to see his equal at the mayo clinic because I think I have some blood vessels on my nerve from my surgery and want another opinion.

    Sorry so long, always go and be proactive do not let one doctor be end all be al l and make sure you KNOW WHY you are having TN pain not just its TN pain . Some treatments are possible and other medicines as you will read on the web sill. Regardless of age you can find your way through this. smile  I have and live a normal life now despite pain.

    Goodluck and I hope this helps if you have questions let me know. Always happy to share!

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  • Posted

    How handy that you posted this today. I am on 75mg Lyrica and seeing my Neurologist tomorrow to ask about adding more. I am sure he will okay it but he will probably not give me that further info about bad dreams etc as he is not very communicative and its generally that i have to ask specific questions or ask if there is a different medication i can try. He is an older man. The one i had before looked about the age of my son and told me nothing either. What's with these guys? I had some deep lower jaw pain which I think in my case was clenching my teeth so i now conciously make myself relax my jaw. If it comes back i will see the dentist for a mouthguard to use when i sleep but its working so far. I am trying to relax myself all over when i can too especially my neck and shoulders. I will try anything and everything. Taking vitamin B (for stress) and L-lysine too.
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    • Posted

      Hi Val I went the nightguard bit and went through 3 of them when teeth were lost at $700 to $1000 each I decided I could do a make your own by using a athletic mouthpiece and turn it upside down and form fit with hot water instructions. They are only a couple of dollars each so if you mess one up no big deal .It works for me.

      dick

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  • Posted

    If the dose that you're on is working, stick with that.My daughter takes Tegretol,Gabapentin and Amitryptiline for TN.Ordinary painkillers,including morphine don't work for TN. The nerve blockers can be used long-term ,but generally make my daughter sleepy-especially the Amitryptiline(so she takes that within 10 mins of bedtime).The site www.livingwithtn.org is a very helpful resource for sufferers of this horrible condition.Best of luck in controlling your pain.
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  • Posted

    Hi Dick I am also on Lyrica 75mg 3 a day.I used to get horrific  pain  in the face same as you.That running along the lip made me want to die.The latest Godzilla does is climb across the roof of my mouth while throwing spears into the soft tissue there.Then he retreats to lie in wait in the right incisor until I wake holding my mouth the wrong way.There's nothing  in the jaw like yours.I think that is the 3rd type of neuralgia while mine is 2nd.No bad dreams but a bit of lurching like a drunk sometimes.If I am careful waking and don't alter the head angle I can get breakfast safely.Best Wishes
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