Neuro questions

Hi all,I’m a newbie here and have my first neurologist appointment in Tuesday. Is there anything I should ask or need to know? Any advice greatly appreciated x

Hiya hun, welcome!

Do you mean neurosurgery or neurology, and what have you tried so far?xx

Jess x

Whoops sorry, it’s a neurology appointment. Mine is a slightly complicated story to say the least, so I’ll try to be brief. For many years I’ve had various “symptoms” that I’ve been to my GP about and have been diagnosed as x, y or z. From supposed “tension headaches” which feel like a stabbing pain usually on one side of my forehead with an ache behind the eye on that side, like someone is trying to push it out. To “carpal tunnel syndrome” in both hands, my hands shake almost constantly and ache with occasional sharp pains in various places and losing of fine motor skills. I find it very difficult to fasten buttons etc. Anywho without giving all the symptoms I think I may have MS or something similar which came as the conclusion of months of research.

At the start if December I started with a pain on the lower right side of my face and put it down to toothache, after a day or so I realised pain relief wasn’t helping and the pain would last only a short time and disappear again. It was a sharp shooting pain across my jaw and cheek and eventually became so frequent and excruciating that I went to my GP who diagnosed TN and sent me on my way with amitriptyline 10mcg with instructions to rotate up to 40mcg if needed. This went on for a week and slowly went away, I was on 30mcg at this point.

Three weeks ago the pain came back on my left side as a burning sensation punctuated by the same sharp stabbing pains. For the first two weeks it was copable but just over a week ago it became excruciating again. So I upped to 40mcg amitriptyline on the Friday and returned to my GP on the Monday, still in agony. He prescribed Carbamazepine of 100mcg one tablet twice a day. These were a god send, by Wednesday the pain was all but gone…Thursday morning I woke up pain free but with a very swollen upper lip and cheek around my nose. After an emergency trip to my walk in centre and being prescribed antihistamines which I take daily anyway they told me to stop the carbamazepine and return to my doctor in Friday. Which I duly did and was given nortriptilyne. After reading the carbamazepine leaflet though I think what caused my reaction was a combination of that and the amitriptyline together, everyone is different and it is one of the warning on carbamazepine to tell your doc if your taking it. Since then I have taken nothing, the amitriptyline didn’t help so I doubt the amitriptyline will. The only thing to help was carbamazepine and I don’t want to risk it again.

From the research I have done, and excuse the spellings here, gabapatin and baclofen are both used to treat MS and TN so I’m thinking of asking for one of those instead. But as I said I’m a complete newbie and would really appreciate any advice or words of wisdom you folks have x

Don't worry about it being complicated! we all have our stories here!

I have no experience with MS but plenty with TN. Gabapentin is used regularly in TN treatment. Personally i've tried it twice (before and after my surgery). It made me feel very dizzy and tried by the time i was at 3000mg a day? there is also pregabalin, which they may try if you don't get on well with Gabapentin or it simply doesn't work?

The fact that you had TN first on your left and then on your right, is EXTREMELY rare, however saying that i myself get pain on both sides, so make sure to discuss that with your neurologist.

If you are struggling to cope with the pain or side effects ect, it might be useful to have a referral to pain/stress clinic?

and most importantly, ask for a MRI!! you may have a artery or vein compressing your nerve which is causing the pain? so make sure you explore all avenues!

and good luck!xxx

The pain at its worse brings me to my knees. I’ve a fairly high pain threshold but this is certainly more than I can bear, so when I tried the carbamazepine and within 48 hours I was pain free it felt like a breakthrough.

I know I had a reaction I’m just not sure to what as I took my usual antihistamine and amitriptyline as well, but in the Wednesday also took paracetamol for a headache. Which again is in the leaflet of speak to your doctor first. So I plan to ask the neurologist about it on Tuesday, and thank you I’ll be sure to push for an mri if they don’t suggest it x

Hi, There, (I'm hopeless at trying to work out what greeting to use here) ;-)

I've been a sufferer for around 14 years and for the first 10 of those I was ill for around 3 months every year, suffering with pain in my jaw followed by burning on the side of my head. These episodes lasted for around 20 minutes and I could have 5 of these episodes a day. It wasn't nice that's for sure.

I was on all the drugs you're taking now, but they never seemed to make much difference, (if any). I had surgery twice and that helped at the time, but the following year it came back as usual. I was then transferred to Dr. Chong at Medway hospital and he prescribed Oxcabazapine, like you and had the same result, I'm now pain free. I take nothing else but like you, the previous cocktail of drugs had some very unpleasant side effects. For the last 2 years I have been almost symptom free and as soon as it seems as if it might be coming back, I start to build up the oxcarbazapine and it goes away again. I now live a normal life. Just to confirm, I take oxcarbazapine and nothing else and all the unpleasant side effects have gone.

If nothing else I hope this gives you hope for the future. It can be controlled. I wish you all the very best of luck'

Roger (Convery)

Hi Roger,Did you have any side effects when you first took oxcarbarmazepine ? If so how long did they take to go? It’s one drug I haven’t as yet tried but so many others have given me ghastly side effects that I have had to stop.Thanks!

Go to and type in low dose naltrexone and trigeminal neuralgia. You will find a number of people who claim that low dose naltrexone relieved their symptoms of tn. Is this the best way to determine the efficacy o f a treatment? No. The treatment of tn is not a perfect science. Nobody understands this affliction. What may help some does not help others. I am just a guy diagnosed with tn trying to find my best options. I look the information over that is available, use common sense, and roll the dice. Any treatment available is a roll of the dice. Here is what I ask myself. 1. Has the treatment worked for others? 2. What are the risks? 3. What is it going to cost me? 4. Does this treatment make sense? In the case of low dose naltrexone: 1. Yes it has worked for others. 2. It has been proven safe by the FDA at a 50-milligram dose. The low dose is 4.5 milligrams or less. I have read nothing about side effects. Some people just take it as a cancer preventative. 3. Cost under $40.00 a month in the U.S. may vary between pharmacies. 4. This treatment makes sense because this drug has been used successfully for a variety of diseases, including various types of cancers, HIV/AIDS, Parkinson’s disease, Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), emphysema, as well as multiple sclerosis (MS) and 30 or so other autoimmune diseases. Anyone who has researched tn knows that there may well be a connection between tn and the immune system in some people. In other people, it may be a blood vessel hitting a nerve and in yet other people it may be something else . Here is my point. I am a man confronted with a myriad of treatments for tn. It is overwhelming and it would take many years to try them all. Most of the treatments are just plain bad. Dangerous and iffy surgeries. Toxic drugs with terrible side effects. After weighing everything out the first thing I would try is low dose naltrexone. I firmly believe it should be the first course of action by any intelligent person who has been diagnosed with this ugly disease.

Hi Eileen,

It's hard to know really about side effects. I was still taking all the other stuff, reducing the old ones at the same time as I increased the new ones. I really can't remember exactly what happened, but the period of TN. went away and I reduced everything as usual. When the next episode started, I was just on oxcarbazapine and with no side effects.

One of the effects of the old drugs was memory loss and as I'm 70 and my memory is not what it was anyway, a lot of these details are a little hazy, but my worst symptoms were nausea, and dizziness. Sometimes I felt as if I was going to faint, most unpleasant. All these side effects have gone now.


Eileen said:

Hi Roger,Did you have any side effects when you first took oxcarbarmazepine ? If so how long did they take to go? It's one drug I haven't as yet tried but so many others have given me ghastly side effects that I have had to stop.Thanks!

Thanks Roger,most helpful! My combination of drugs at the moment are 25 mg pregabalin,10 mg nortripyline and .75 mg clonazepam.This combination is not working( I have type 2.)I see my G P tomorrow for referral to a neurologist.The drug that took away my pain was pregabalin but at high died of 600 mg a day …I was like a zombie and had to come down what which level it doesn’t work.I have an appointment at a pain clinic on the 17 th so will discuss oxcarbarmazepine then.Im sooo scared of heavy drugs due to my reactions to them! Cheers!