Diagnosis of trigeminal neuralgia

[Ericamo1]

Neurologist told me today he thought what I have is tn. He prescribed me gabapentin. Has anyone tried this medication? Any side effects? Also my pain is constantly there with bouts of sharp pain. I read it gets worse over time. Is this true or do people get better?

[ptexys]

Hi there I took for a while I didn’t like it made

Me just really stoned seems to be the most popular for the pain...a lot people take it for the pain, to me specially in the morning made me dry mouth and felt a bit high I didn’t like it and didn’t took my pain away ...it’s crazy that he thought that’s the problem with all of them they think but they not sure so they prescribe I had arguement with my doctor cos he told me I had restless legs well he thought so he precribed me that and what I had was the effect of coming out of long term opioids but anyway seems to work for a lot of people but please get second third opinion if you can ...

All the best n keep strong x

P.

[Ericamo1 in reply to ptexys]

I haven't taken it after I read some side effects I rather have the pain than to not feel like I can function. Mu days are pretty hectic. I dont like that I complained about my neck first and that's where the pain originated and he told me it was nothing to do with my neck wouldn't order me an mri and gave me a 6 month supply of this medication without knowing for sure that's what it is

[ptexys in reply to Ericamo1]

You need to complain and complain for them to send you to do a scan (they just saving money) …they told me what i had was to do with my back so they sent me for surgery, he didn’t even want to listen but turns out wasnt my back…thats the joys complain to him or get second opinion x

[Marz]

B12 helps with nerve pain. Have you been tested ? Level needs to be over 500 to prevent neurological damage ...

[ptexys in reply to Marz]

yeh i did and took all that but saturday got a letter that im going to take capsaicin patches in middle of september so i hope that will help with the pain

[Marz in reply to ptexys]

I find B12 injections work well. What was your B12 test result ?

[ptexys in reply to Marz]

interesting you saying that because 20 y ago had problems with sciatica and that b12 injections as i remember was the only thing that helped me

[Marz in reply to ptexys]

I live in Crete and can buy B12 ampoules over the counter and syringes x 3 for less than 5 euro. If you click onto my name above you can read my Bio - only takes a couple of minutes ! B12 is used in many countries to treat pain.

B12 is involved in the myelin sheath that protects all nerves - when B12 is low the myelin sheath is compromised.

[ptexys in reply to Marz]

mine was in portugal

[Marz in reply to ptexys]

Time for some more then ! - or another trip !

[Coppertel]

Hi, so sorry you've been diagnosed with this beast TN. I too was diagnosed earlier in the year. Get to know what your pain triggers are.

For me it's brushing my teeth, I use a baby toothbrush on the sensitive area.

Eating during a painful episode, I eat soup and other soft foods.

Wind/breeze on my face, I now have a good collection of scarves to cover my jaw area!

I saw two dentists and two GPs before TN was mentioned. I now take Amitriptyline in the evening, upped the dose gradually. It's working well for me. The shock like painful episodes have stopped, my teeth and gums (bottom right) are still sensitive, but so much better since taking the med.

All meds take time to work, so give it a week or two if you can. Hopefully your prescribed med will work for you, if not see GP to try something different.

You may have periods where you're in remission, this can be days, weeks or sometimes years. This happened with me before I was diagnosed, and when the pain returned it was stronger.

There is a TN UK Facebook group, I've found really helpful over the past few months. At my lowest I felt nobody understood what I was experiencing. It helped chatting with people in the same position, and I received some good advice.

Hope you're pain free soon.

[Momlife]

Hello..I haven't been diagnosed other than "idiopathic neuropathy" and I deal with those symptoms as well as others. I was prescribed gabapentin 300mg a yr ago. At a recent visit about a month ago, I told her im up to about 900 to 1000 a day. My neurologist says "its ok, you can take up to 2400mg a day. Take what you need to." Now that to me is bizarre! And I personally dont like takings meds and/or the side effects. This drug makes me walk into walls (worse than I do already) makes me dizzy, and out of it. When raising a family its hard to live like that and I choose to just deal with my neuropathy in other ways, or with nothing at all. Its horrible really. You cant win either way is how I look at it. I do want to say that it does help with nerve pain but will not completely take it away nor heal it. I would say try it at low doses and see what effects you have and go from there. Good luck!

[P_neuropathy]

Been taking it for 12 years. I have taken the maximum (I believe) for a few years. Side affects seam to depend on person greatly. Many people taking 300mg have serious problems. I was taking 3600mg now taking 1800mg after pain stimulator was installed. My side affects have included temporary memory loss issues, gas, and diarrhea. My bowel movements have a unique awful chemical type smell. The only good thing I can say, other than that it works, is the affects seem to go away after you stop taking without any consequence.

[Ericamo1]

I dont have issues as far as brushing teeth the wind or eating. I wouldn't describe it as sharp pains and it doesnt come and go. I feel like the side if my face is constantly sore and my temple area feels tender. I also have a sore neck and back of head. I've never had my vitamin levels checked. I'll ask my GPabout that.

[ellenhamid]

I take Gabapentine . I started on a low dosage of 300 mg and went up to 1200 mg. It took about a week to start working. On the high dosage I had tiredness as a side effect but am now down to 600 mg and no more side effects plus it works in combination with Vit B12, Omega 3 and paracetamol. I feel I can function again.

Good luck to you but I believe, worth the try!

[Tofuincident]

Hello Eric,

Firstly let me say that I am so sorry you have been diagnosed with TN, I was diagnosed over 2 years ago now at age 34 and its been hard at times. I have never taken Garbapentin but I have had Carbamazepine (which I am not on anymore), Amitriptyline (did nothing for the pain), Oxcarbazepine and Lamotrigine; both of which I take now.

All of the drugs have lots of side effects, you need to find the one/s that work for you, the side effects can be difficult to manage but they are preferable to TN pain so keep that in mind. My experience of all of the drugs is that they take time to settle and that if I increase or decrease my dosage that creates it's own side effects. It's really hard to accept right now but you need some patience, equally if the Garbapentin isn't working or the side effects are too much after you have been on it for a few weeks then speak to your GP, there are other options. FYI the side effects can be both mental and physical.

One of the things that I have struggled with is accepting that TN is forever, there can be periods of remission but they are rare and usually short, I had one for 3 months and it came back with a vengeance.

At this point it's about talking to others with similar experiences, reducing your stress levels which impact hugely on TN and being good to yourself.

Please take care

Michelle

[Kat1224 in reply to Tofuincident]

Please I have it too but had 8yrs pain free due to a 30 min surgery "balloon compression" - there is an end and it can have pain free years without drugs or pulling funny pained faces! Down side put on weight cos I could eat again!

[Heatherthomas]

Hi there, I was prescribed this for severe nerve pain, and it made me feel really ill.

The best way I can try to describe it is that it altered my brain function. I am usually bright, happy, upbeat, energetic and optomistic about my illness and life in general. After taking just one capsule of this drug I became a different person, quiet, withdrawn, depressed .. I stayed in bed all day just wanting to die!

I never took another one and never will.

I have read that this drug is habit forming and addiction can happen quite quickly.

I send you love and wish you well ... try to find another answer xx

[Kat1224]

TN can be treated with 30min op by a neurosurgeon with "Balloon compression" I had 8yrs drug free, about to have it repeated! Definitely worth it! No scar no pain instantly! Ask your spealists! Think of the money 💰 it saves everyone!

[alvinefisher]

Gabapentin helped me for about 14 years, but it lost its effectiveness and so I got transitioned to Lyrica, which is helping me quite a bit. Both medicines have been a great help in their time and well worth any side effects.

[Kat1224]

I'm on that before op for my TN ask neurologist for balloon compression and it's an end to these drugs for about 8yrs for me! And only 30min surgery! Do not despair 😊there is an end xxx

[peppermint8822]

Hi, This TN just started about 2 weeks ago and over the past 3 days I literally fall into a chair holding my face on the right side with the most intense sharp electrical pain I've ever experienced. I called the GP and she prescribed Carbamazepine. This is the second day. The pain seemed to settle down as I had 3 short episodes today compared to the 5 long episodes over past couple of days. After taking this drug, I am still sitting in a chair sort of dazed. I haven't even brushed my teeth or combed my hair today. This is not like me. I am reading all your comments today and am horrified to think I have to live with this intense electrical pain for the rest of my life. Has anyone tried acupuncture?

[Ericamo1 in reply to peppermint8822]

I haven't tried acupuncture yet but i was looking into it also