Anyone got ATN?

hi, im not dealing with things too great at all really, i don't suppose anyone really does. i only started 25mg last saturday Neuro didn't have time to listen to my concerns just said i should reduce the Tegretol which im not happy to do so right now but i'll speak with my own doc about it. think i might get doc to refer me to a neurosurgeon and see what they have to say about my options.

im fed up with reading and reading and reading, i can't concentrate on the words and none make any sense, but something i did read was that a few docs in the states seem to think that  ATN is viral based, so i'll chack that one out.

Of course you are fed up with reading reading reading ......you just want the pain to go! But do persevere no matter how horrible you feel( we all identify here) and suddenly you will hit upon something that helps you tremendously,you really will,and you will heal.Have you asked your GP about getting on a pain management course?If not do so for there you will meet face to face people who are going through just what you are and somehow this is tremendously helpful.

Hope your day is better!

pain clinic is next.

yes i had an mri and it was normal, but how many have had an mvd and they have actually found the nerve wrapped round a blood vessel-many.

i don't know what else to do, i give up. this is no life.

I'va had TN for over 2 years in varying intensities.

Now on 600Mg Ox Carbamazepine three times a day (down from 4 times) and can't exist without it.

Don't be scared, just keep the research up till YOU find the best solution. Most GP's come across this so seldom many aren't in any way up to speed on TN and its treatment.

Don't just believe everything you read or see, ask around, relate it to your experiences and don't let your GP make decisions he has no idea why he is doing so. I had to actually argue with mine till he admitted he was not up to speed. From there on we worked together on it and have a happy medium at the present.

Good Luck

Thanks for your reply.  Have you had any other investigations like an MRI or just tablets?  If you don't mind me asking too are you completely pain free on your dose of carbamazepine?  Is this site the best for research?  

Hi Dawn66194

I have had four MRI's, three CAT scans, and next Monday I am having a an Ultra Sound scan with possibly a biopsy on the PAROTID Gland!

The Neuro guys started at the base of the neck, then to MACKELS CAVE (half way up the face) and now the PAROTID Gland high up on the face. Not sure if this is a 'heads or tails' guess or a real diagnosis with facts and reasoning behind it. I have been told nothing and got the letter last Thursday to present myself on Monday!

There is nothing wrong with this forum for ideas but I would be chasing Mr Google as well and looking at the US and Australian sites as well. You can't do too much research and the more opinions you get the better the decision You will end up making.

I had ginormous headaches as well as the face pain and after trial and error I am on 600Mg of  Ox Carbamazepine three times as day and 50Mg of Lyrica (nasty piece of work this stuff) three times a day. This has the whole thing under control and life is livable. I started on 200Mg of Lyrica and ended up a zombie that couldn't walk a straight line even.

Look everywhere, filter the rubbish that YOU feel are over the top and then come to a decision. The effects are so varied there is no single treaatment for everyone. Just be armed with the facts and get into the medicos and design a suitable treatment. Mine took 6 months to get right so be prepared for trial and error type efforts.

Good Luck

 

Hi Baudwalker,

i read your reply to Dawn66194..are you in the UK?If so I'd like to ask you some questions please ! Very glad you gave your TN under control! 

Hi Wanganui

Sounds like a name from the land of the long white cloud!

Yes I am in Cornwall but originated from Australia and been here just around 2 years

Cheers

 

Yes I am in the uk Aberdeen scotkand

Bingo Baudwalker but I've been here longer than I lived in NZ! Ok here come the questions....are you using the NHS,if so did you have to push to see the neurologist ..it seems to me that on your two years of TN you have covered a lot of investigations.Did you wait long tohave these procedures done? My doctor moves so slowly and even though I go armed with the knowledge I end up trying medications I have already tried, so frustrating as I feel I do know a lot re TN.I have had this complaint for almost 14 years but have had a few remissions and for several years was able to manage the pain on 300 mg pregabalin and 50mg clonazepam.However the pregabalin stopped working and I'm now on just 25 mg( withdrawal was the pits!)and still on the clonazepam which I'd rather not be but at least I get some sleep!I have had two spheno nerve blocks,botox along with several medications that gave me awful side effects.I have heard good things about lamotrigine so may be next medication.I have never seen a neurologist  and feel I need to now as pain has accelerated in last three months as I am on very little medication.In the beginning of all this I was on 600 mg of pregabalin which gave me wonderful relief ( I called it my miracle drug!) for over three years .However along with the relief I was like a junkie! Did you have side effects from the oxcarbarmazepine ?Its one drug I haven't tried.Anyway good luck for tomorrow! Just off to google parotid gland!

Hi Dawn and welcome to this site.I agree wholeheartedly with everything Baudwalker said to you.The more you know about this complaint the better you are to be your own advocate! Please don't be scared though but I can understand that feeling.Its is very early days for you in your medication and your dose is small...give it a few more weeks and fingers crossed you may be pain free! All the best!

A PS....rereading one of your replies to Dawn I liked the bit about how it took time to get your GP to work with you....this is my constant frustration as mine isn't knowledgable re TN .I do argue the point but to no avail!And time gets lost as I remain in pain.......

Had INTERNAL ERROR on the sverver so here is what I typed

Hi Wanganui

Yes I am using the NHS. Being and old fart (71 chasing 72) they had no issues accepting me. Australia has reciprocal agreements with the UK on medical treatment. Australia treats UK citizens as well just they have a 'part payment' structure which upsets a few people. Over 70 in AUS medical treatment and pharmacuticles are all free of charge.

I haven't had any procedures yet, bar scans, and they were the result of Neuro's second guessing each other and trying to prove something different was happening.

I had a bowel cancer which was removed completely and I was declared cancer free but 3 if the 12 lymph nodes they removed showed signs of cancer cells.

So to make sure their collective bums were covered they put me on 8 sessions of chemo and so far I have had 6 of them. Once they are finished I am no wiser because there is nothing there that will show up on a scan so they can't say whether it worked or not.

The Oncologist was the font of knowledge and helped me more than anyone else. My GP referred me to the Neuro's and while it has been a long and useless trip so far, tomorrow is the first procedure that will be able to show any actual results (if it actually does of course)

I hate to be cynical but so far everything neuro wise seems like 'My guess is better that your guess' type of situation.

The ox carbarmazepine (there is a space between the words) seems to be better than the others at least for me. I started on carbarmazepine but found it not very suitable for me. BE AWARE - oxcarbarmazepine  IS MUCH MORE EXPENSIVE so the GP's surgery might be protecting their income stream. It is amazing how the COST of drugs has a really MAJOR effect on whether they get prescribed or not. I have no issues with that but if they won't try somethiong because of cost then most patients will never get the right treatment!

I don't know about any of the other treatments mentioned here so I can't really comment, sorry about that.

My biggest problem was the GP to start. He knew two tenths of three fifths of bugger all about TN and we have done the trip together. At least he ws progressive enough to want to make the trip with me. No issues about costs and changing strengths was no issues either.

All I can advise is BE ASSERTIVE and don't be fobbed of with useless excuses. Change GP's if you have to and then be up front from the start if you change. Don't accept a negative attitude or being fobbed off by the medicos.

I was a zombie when I started Lyrica (200Mg four times a day) and even head butted a glass doored china cabinet. Now down to 50Mg three times a day and still stumbley and wobbley walking but it stopped the massive headaches I was getting when things were bad. I still have very bad numbness of the left size of the mouth. worse than a visit to the dentist for an extraction. I have to concentrate on keeping mouth closed and dribble like a baby without effort if I don't.

​I have probably wandered way off course from the subject so I apologise for that

Well .. been and had the Ultra Sound Scan on the Parotid Gland.

I can report there are NO ELEPHANTS in my head or neck.

They did the affected side, the unaffected side and the neck. And not one ELEPHANT was evident. (not even traces where they had been)

Now I await the next guess by the Neuro's and where we go then.

Probably amputate the head and solve the entire problem in one go.

Keep watching for the next episode in this enthralling soap opera

Baudy!

Haha! But that's good news and at least you know that oxcarmazapine is an effective medication for you!

Thanks for your reply .....I am due at the doctors on Wed and will not move my butt until I am met halfway by him....we have to work together if there is to be any proactiveness here.

Cheers!

Come back to Australia. The NHS will kill you unless it's improved in the last 25 years since I emigrated. Unless you pay for a properly qualified specialist you end up with some trainee butcher just out of medical school. I had an experience with at an ear clinic in London when I decided to have my ears checked because of pain caused by diving. Upshot was an operation that left me totally deaf in my left ear and partially deaf in the right which discharged non stop. The specialist in Melbourne; was aghast and said the reason for my trouble was infected tonsils which he removed. Since then no discharge and hearing in right ear fine but of course left ear hearing gone forever. I've suffered with TN for about 20 years had all the tests and now just keep taking the tablets. While in the UK a few years ago I ran out of Tegretol and visited the local GP in Pimlico. He didn't even know what trigeminal neuralgia was.

 

Hi Geoffrey

Well here is that 'real live proof' that EACH INDIVIDUAL should research for THEMSELVES and then use ALL of the information to draw conclusions on THEIR OWN ISSUES.

Yes ALL of my treatment has been through the NHS and whilst at times they can be very frustrating thy could not have been more interested and investigative if they tried.

They chased every shadow and didn't just grab the first one and dump that as the end result.

My GP knew very little and I got the old "Bell's Palsy" just wait and it will go away. I delved deeper and introduced him the the TN area and we didthe journey together. I got more excited about new (to me) discoveries and he also took it upon himself to upskill through his peers in the profession as well.

I have had bowel cancer total blockage removed, Chemo to chase any gremlins that did not get off the train when the man with the knife told them to.

The TN went through countless loop de loops during all this and the whole team (they discuss active cases betweeen Exeter and Land's End weekly) kept following their best guess or lead.

Finally centered on the PAROTID Gland (left side). The save nerve cluster as is treated with MVD but in a different place on the head.

Away it went and a different genie popped out of the bottle and I haven't felt this good since my first little facial itch that started it was back in Tassie. So You tell me I will get better treatment in Tasmania?????.

Me thinks You should experience life in Tassie for a while!

As far as experience I have already said down here they get together on such cases and collectively look for solutions and the Surgeon doing the Parotidectomy was asked straight out "How many of these operations have you done and how recently?"

The answer was more than 60 and the most recent two weeks previously. He had no issues with me asking such a direct question as it gave him confidence I was fully intertesed on what was going as well.

I realise everyone has the experiences they encounter and it seems that while Your's was far less satifactory than mine they were at diffferent places and times.

Luckily I never had much issue in OZ because only time I used the hospital system was way back in 1966 after being knocked off a motorbike. Broke leg, cracked head, and took nine months in plaster to get it set so as I could walk again. Kept away after that.

I see here there are many happy people after MVD and I could not be happier for everyone of them. For me that procedure would have been of no use at all.

All the best and I hope you get a solution that gives the relief you are after very soon. There are so many different ways this incidious issue affects individuals it seems the INDIVIDUAL treatment types are the best

OK..I have a feeling I am dribbling now so I will be away!!!!!

Good Luck