Anyone got ATN?
Posted , 12 users are following.
Neuro told me yesterday i have ATN, has anyone else got it and what are your sysmptoms and if you have been offered any treatment?
mine is on both sides, when i first got it ihad the head pains but don't really get that now, i have ear pain sometimes on the left and on the right side i get the lightening strikes either in the cheek or teeth im not sure which to be honest! i have had this for i think a year caused by dental work which is why i thought i had Trigeminal Neuropathic Pain.
i am on Tegrol, Gabapentin and now on Lamotrigine, im weening myself off the Tegretol as they don't seem to be working. Neuro told me yesterday there is no treatment whatsoever apart from tablets for ATN.
thanks!
2 likes, 29 replies
wanganui fed-up
Posted
I agree with joe...research,research,research..you are your best advocate ,your only one really and if you arm yourself with ATN knowledge you are powerful when it comes treatment plans! If you get the right medication to suit you then go for it,if not there are several non invasive treatments.I have heard that lamotrigine is good...how are you doing with this? Anyway hang in there,you are not alone.Warm wishes!
fed-up wanganui
Posted
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.
wanganui fed-up
Posted
Hope your day is better!
fed-up wanganui
Posted
Aitchie fed-up
Posted
I've got ATN too. My symptoms are more like spasms than the electric shooting pains, but otherwise they come suddenly and go again like TN - only affecting my left side. And it gives me head and ear ache and a feeling that I've sort of been punched in the top of my jaw. Luckily Tegretol is working for me at the mo.
did your neuro send you for an MRI to see if they could spot cause? I gather there are some things like Ms that can be a cause of ATN but mine was clear. No sure how much more can be done but I've found some stories of remission which gives some hope, plus although it's trsail and error hopefully you can find a drug combo that works for you.
fed-up Aitchie
Posted
i don't know what else to do, i give up. this is no life.
dawn66194 fed-up
Posted
Baudwalker dawn66194
Posted
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
dawn66194 Baudwalker
Posted
Baudwalker dawn66194
Posted
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
wanganui Baudwalker
Posted
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!
Baudwalker wanganui
Posted
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
dawn66194 wanganui
Posted
wanganui Baudwalker
Posted
wanganui dawn66194
Posted
wanganui Baudwalker
Posted
Baudwalker wanganui
Posted
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
Baudwalker
Posted
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!
wanganui Baudwalker
Posted
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!
geoffrey35113 Baudwalker
Posted
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.
Baudwalker geoffrey35113
Posted
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