TN - Left in the dark

Amazingchin,

First, sorry you got this so young. Not sure what you mean by dimensia. In my case, blurry vision after carbamazepine is part of it; but darn well worth supressing the electric shocks. Still get dull pains.

In my case, MS has caused leasions on the sheath surrounding the brain which interfere with the trigeminal nerve. Meds are my only option. Carbamazepine 800 mg is my best one. Since effective for 8 years, I don't worry about it too much. And I'm darn happy to have it. The shocks were debilitating.

eddie13

Hi

First start doing some research about TN on the net. The usual cause is something has upset/damaged the sheath of the trigemal nerve. There are numerous places where this can happen in the skull area. I can't post any links here because they aren't permitted but there is a world of knowledge out there even qite good images of the skull area and where the damage can occur.

My lot have done three MRI's two CT's and one ultra sopund and they ar still no closer to finding the exact area in trouble. Now they want a PET scan where they injecct radio active pormula into the veins before they do the scan.

After that another MRI with an even different injection as well. After that they will no doubt toss a coin at their specialiasts conferences and see where it lands

It is a very difficult condition to properly diagnose and even more difficult to treat so PERSEVERE and don't give up. Be 'forceful' with your GP and make him explore the options before fobbing you off the the specialists that don't have much of an idea as well.

I am on 50mg on Lyrica four times a day(a NASTY piece of work but it works with the pain) and 600Mg of ox carbamazine ( as different to the ordinary version - MUCH more expensive so most GP's don't like approving it) four times a day and it has been under control for 6 or more months now.

I had to experiment (with the GP on side) for a year to get this far and I ain't giving it up for anyone. At the same time I am on chemo as well.

I wish You all the luck in the world and it will only work if YOU DRIVE IT and make the GP listen. Take him/her links to things Ask WHY CAN'T YOU TRY IT IF IT WORKS FOR OTHERS. The answer will give a hint to the attitude of the GP

All the best

 

let's face it, some GP's are more interested than others. Some Neurologist are too. As suggested by Baudwalker in their post, it will only move forward if you drive it. Keep very hands-on, keep a journal including prints of what you found out and ask questions until you feel like you are The QuizMaster Supreme. This site is excellent and I also go to the one on Facebook called " Trigeminal Neuralgia Australia- New Zealand " I am a member on both sites. I had the same kind of help you got- "here is your Tegretol, 'bye now" Clearly they wanted nothing to do with me. There are quite a few reasons why you got chosen by the universe for this particular torment. Try googling things like "Trigeminal Neuralgia Fact Sheet" to get a rounded view of Tn. Then join in with us and any other site you find good so that you find the right questions to grill your doctors with. Some will be more helpful than others but don't just let them fob you off with pills. 800mg is a lot as you said although I am on 1000mg Tegretol and 350Lyrica but that is almost lethal level and I hope to change that. If you are taking 800mg now, what are they going to do if you get worse? Most common op is MVD but there are others including Gamma Knife and you need to ask your Neurologist about all of them and why they have not been suggested to you so that you can make an informed choice. Doctors are like brands of tea, some are just better than others and you have try a few before you find the one to stay with. I wish you the best in your travels around the medical world.

Hey Tim,

You are so youg for this to be happening. It must be very difficult. I do hope there is an alternative to tegretol. It makes me so tired, and takes the edge off  the pain until about 1:00 in the afternoon. I will try the scrambler therapy and let you know how it goes. I wish there was a natural way to deal with this also. My jaw clicks but it may be because they pulled 3 teeth on one side. It is a side effect from my TN and I think I clench my teeth more...I will let you know if I hear of more alternatives.I want to get off the tegretol It effects my vision also.

Take Care,

Anna

Hi all,

Thanks for the replies. General consensus seems to be that I need to be more forceful. I'm not the greatest at this....I saw a different doctor to my usual one since my initial post and said "I don't want to just be told to keep taking tegretol...I appreciate it has been somewhat effective managing the pain but surely I have more options than live with debilitating pain or take the drugs and live with poo brain."

The doctor must have heard "I love taking these...give me all the drugs" as I'm now taking gabapentin as well.

I have another appointment in a couple of weeks. I'm going to take my angry face and some info on surgical options with me.

Tim

Hi Pal. I've had TN for over 18 yrs. If I could recommend 2 things, the first would be dextrose injections to the area in pain. I tried it 6 months ago and the pain is almost gone. I am going for a second shot soon. As far as how long it lasts, it's been good for me ever since. On a scale of 10, I'm a 5 1/2 .

If for whatever reason you don't feel better, I would try gamma knife. It works for most ppl, just not for me because my TN is more chronic.

Hi Tim,

I was diagnosed with TGN 2-3 years ago. I am taking 1200mg Gabapentin and 800mg Tegretol (Carbamazepine). As my painkillers gradually built up I began to experience a whole host of symptoms, exhaustion, memory loss, lack of concentration, skin hives, spots, dizziness and other things I can't remember. I also take stuff for ulcerated colitis.

I saw the NHS consultant too recently for 5 minutes after a CT scan. He said my scan showed nothing and sent me back to my GP who added another pill to my meds. Another off his books. Sounds familiar!

I have tracked down the best fellow in the field locally by doing my research and finding the specialist who works part time for a centre of excellence NHS hospital and is part time private and arranged a private appointment at a private, comfortable hospital (for 1 hour not 5 NHS minutes) which will cost £250 and will discuss both treatment options and importantly medication options as the medication simply masks the pain and is a huge issue on its own. 

I got an appointment within 10 days going privately.

I am realistic but there may be help from glycerol injections or something else and of course I am very keen to take the advice about the medication.  

I have been advised that if he can determine a way forward for me he shall give instructions to my local GP for the specific further treatment I need and this will be done much sooner than the slow referral process the NHS route has to offer. I probably can't afford the cost of paying for private procedures. 

I would suggest Tim, if you could get the funds together, put yourself first, do your research and look for a well renowned private consultant near you who will do both NHS and private work and 'self refer' yourself to them as a private patient. Getting things done quickly puts you in a more positive frame of mind anyway, so go for it, and all the best for now. Don't put it off. Go for it. Don't delay. Keep me posted.

Duncan.