TN confused??

Brain and nerves
1

hi all

ive recently been diagnosed by my GP with TN, had these symptoms 8 years ago and they went, now has returned. have asked for a mri scan but they just shrug it off! have now been referred to pain clinic.  im taking 75ml pregablin twice a day, they used this drug because of the effect the others would do to my job (lorry driver)

today i have had a asessment with a chiropractor, who is questioning my diagnosis? as what i am explaing doesnt conform with typical TN symptoms? (The total opposite to what my GP said?)

i have my attacks about an hour after going to bed, wake with a earache wich gets stronger and more intense, then spreads down my jaw line to the side of my right nostril, a very intense ache thats lasts between 1-2 hours, 2 hours of rocking, groaning, rubbing my ear and wanting to rip my jaw off!!

i use a T.E.N.S machine which i attach by my right ear and top of jaw which seems to help cope with the pain.

i was taking tremadol to help sedate me as as you all know, theres no medication available to cure the acute pain. But, during one severe attack, and in desperation, i took 8 tremadol, 4 ibuprofen and 2 paracetamol! ( all i had around me at the time )

i have now removed any meds around me as this scared me!

ive been to an optician, dentist and tried aculpuncture

i am now anxious before i go to bed, im tired, moody, and now confused after my visit to the chiropractor??

any advise or thoughts would be very much appreciated

thanks

2

I have to say this sounds very much like my pain.  Thought mine was an ear infection, really deep routed.  Had two MRI scans, both are normal.  My pain has been felt in both sides of face, and because of how long it lasts, it is atypical of TN.  I am now on amitrypiline, which is making me sleep but pain is still there!  NO further forward.  I am considering acupuncture.  Been on neurotin, cabapentin and put a stone on!

3

Hi Wayne

May I suggest you get the opinion of a medically trained specialist, ie. a neurologist. Chiropractors have no specialist knowledge in this field and shouldn't profess otherwise. Ask your GP to refer you to a neurologist. He or she will then decide whether an MRI scan is helpful. Col

4

I completely agree with Colin, and further that although the GP suggested TN (after 8 years?), it is a diagnosis only a Neurologist  can make. It may even take a specialised neurologist to get up to date knowledge. If the TN or ATN is correct in your case, a chiropracter in my view has unacceptable chance of worsening the condition rather than improving it. Well intended I'm sure, but a chiropracter will usually see chiropracter problems. And could even be right in your case, but get the most sophisticated research-led, seen-it-before perspective first. Particularly to differentiate between TN/ATN and TMJ, but remember that this is still not a well understood affliction. Neurologists may cure it one day, but even they are still learning through trial and error, especially when it comes to ATN and treating/operating on it as TN.  

5

Thank you all for your reply

I've asked 3 times now for a scan but have been told it wouldn't tell them anything and if it was anything else I'd be having different symptoms. Feel like I'm being fobbed off!

Mentioned the neuraligist to my gp Friday but she referred me to pain clinic as she said they will do a more thorough investigation??

Feel they're just leaving me to suffer while they half heartedly fart arse about!

Feel like a mushroom!

Kept in the dark and fed bullsh*t!! Lol (excuse my French)

Thanks again for your input and advise, will definitely take your advice into my next appointment

6

My girlfriend is ATN diagnosed. It is not always as extreme as TN, but it is always there, 'like worms burrowing painfully'. Electricity that has made molars fall out and more. It started as a bloody work-related injury at the back of the head behind her ear. I met her 1 year later and started a long distance relationship. and she told me about her headaches. I get headaches, migranes, but not that. I was astonished that it was 1 year and they still had not performed an MRI scan. I was exasperated with her a year later when she still did not have it done. But you see, some people dont question a doctor, even a workers compensation doctor. She is a prison officer, she didn't even believe in taking paracetamol because 'she might become addicted'. Indeed, the doctor sent her to a chiropracter. I told her not to go. Indeed the chiropracter made it worse. After 2 and 1/2 years she finally got the MRI scan and the diagnosis. When they sent her to the pain clinic (WITH THE SPECIFICS OF HER VERSION OF TN), they told her that the lost time was wasted time. That she should have been treated much earlier and the response would be better. For her the pain is sometimes so extreme that she cannot be sure if she is crying or if it is the pain pushing the tears. That is part of her story. You have the right to assert your findings, especially when they are discovered by the GP in the same way. Google Practitioner

7

but please do not call your GP that. It was a silly comment.

8

Hi again

in my experience, keeping a positive relationship with your GP, is a vital, initial step in any situation. Too many people are quick to criticise their GP, and in some cases this may be justified, but you need them on-side!!

Referrals to see a specialist will be more expensive than attending a pain clinic, so this will be the first option on offer. Don't dismiss this opportunity but get the maximum from it. The team working at any pain clinic will obviously vary but give them a chance to do their work and take them on face value. If they are unable to help your situation, they will refer you back to your GP - take a proactive position and make an appointment to see your GP, if this doesn't happen. GPs hardly ever send patients directly for an MRI

scan without the recommendation of a specialist.  For clinical reasons and, above all, cost! So, get the maximum you can out of the pain clinic team and take it from there. Col

9

Sorry to hear about your girlfriend proxy. Sounds awful!

Doesn't fill me with confidence where the chiropractors are concerned!

I'm actually only seeing a chiropractor as my transport manager has just done a degree and needed a head case to study on (which has helped at work due to sporadic sickness and she's able to sympathise with me). I also have nerve pain down my right shoulder and arm she'll look at.

Hopefully I'll get my referral letter soon rather than later and start some sort of progress

You're replies have been a lot of help

Thank you

10

You're right col

My daughter has, after 2 years of consultations, being referred to a specialist and been diagnosed with ehlos danlos syndrome. And that's through biting my lip and being patient, so, it is important to have them on your side.

It's just the NHS wheels turn very slowly, and while I'm waiting, my job, life and wellbeing are suffering!

Am just waiting for my referral letter for the pain clinic and hopefully, start the ball rolling.

I don't really do the doctors much, don't know whether I'm being too polite, or too nieve. I just, as a professional, believe and trust what they say and do.

Only time will tell eh, but I am positive about things

Thank you col

Been very helpful

11

Hi Wayne,

The GP argument is a hard one.  I’ve had TN (& ATN) for 10 years and at times have wanted to hit one of mine!  And yet some are so helpful, however their knowledge is lacking to the point where one googled it.  I mentioned this lack of awareness to 7 consultants at a pain clinic at Kings recently and they implied this was about to change.  So not sure if there’s been some sort of push on TN knowledge out to GP land at all.  I work in the NHS and love it; however I know its faults as a member of staff and a patient.  Push for every referral (your 1st appointment has to be with a consultant), once referred by the GP call the hospital to make sure you are on the waiting list (if they haven’t received it from the GP you won’t be – this happens).  If you have not received a date within about 4-6 weeks phone the outpatients department and keep asking them about your appointment.  Make sure you are aware of how many weeks you have been waiting (there are local and national targets and they are monitored for breaches).  Administration staff are paid very poorly therefore there is a high turnover of staff and things don’t always happen the way they should.  Be persistent but polite as I’m afraid things can go horribly wrong and I’ve needed to chase several appointments and even my MVD operation I’m having in 2 weeks’ time at Kings!

Don’t worry too much about MRIs (although it’s best to first rule out a tumour).  Your symptoms are seen as diagnosis for TN, this is why a GP is not good enough the diagnosis must be backed up by a Head and Neck Consultant or a Neurologist. I had 4 MRIs before we could see something – even then the Radiographer had said it was not showing anything, but the surgeon could see the ‘shadow’ over the root nerve – and showed me.

Your pain only happens at night?  Does your nose get all blocked up at night/morning?  What about when you brush your teeth or wash your face does that not trigger it?  Mine went away for a whole year once.  Mine (similar to yours) is all day, but worse at night; nonetheless the drugs are working quite well at the moment (Lamotrigine & Phenytoin).  However the after effects of the drugs has left me deficient in B9 and low B12 etc. and this has made me feel really rough for the last couple of years to the point of short term memory loss etc.  Surgery is I feel the only option for me now as I’m allergic to most other anticonvulsants.

Please be aware that TN is progressive.  The attacks will get harder, longer and the gaps between them shorter.  Don’t leave it too long to be seen by the right people as it might be that you have something completely different that is more ‘treatable’.

Marie (plus another Wayne)!

12

Hi Marie

Thank you so much for your advice, invaluable!

The pregablin has helped a lot but am still getting the odd attack, again, about an hour after falling asleep but am fine in the day, apart from a very slight tense feeling in my right ear. Trouble is, my gp is reluctant to give me any other drug due to my job, and he seems to think all the pain clinic will do is experiment with meds!

I will push for a consultant and follow your advise on chasing up.

I feel for you, having that dull ache all the time!

The worst is when having a full on attack, there's nothing to take to help!

Just roll around and ride it out!!

Thanks again for your message

All the best

Wayne

13

Hi Wayne,

Haven't had many 'full on' bouts since the introduction of Lamotrigine last March.  Have plenty of mediums though that stop you in your tracks, but thankfully they don't last long.

I spent the first 6 years going from one drug to another.  They have a duty of care to get you pain free, but that doesn't really get to the root of the problem (excuse the pun) does it!  For the drugs I am on now I would have to take so many to kill all of the pain the drugs would end up killing me!  Totally spaced out and my liver is suffering.  I'm only 48 so I have opted for surgery as my body and mind will not be able to take these drugs for another 40 years!  I understand about your job as I don't even feel safe driving any more; anticonvulsants play with your brain too much for my liking.

Hope you get yourself sorted soon.

Regards, Marie