TN

Posted , 7 users are following.

I know many of you who have this are at your wits end. I am too and what's more the information I have found varies so much. Did you know for instance that there are two types of trigeminal neuralgia?

Classic is the one that many people have, but there is also a-typical. Here the pain is what has been described as a dull ache rather than the flashes of extreme pain. I would beg to differ as I believe I have a-typical with bouts of classic. For me, the pain just ramps up and up, starting as a dull ache in the background.

I wish the medical people would get on board with this disease, illness or affliction. How do you get it? Can you get it from whiplash in a car crash? Why are dentists so slow in discerning the difference between toothache and TN?

I would like to know whether anyone would be interested in another site starting with my issues and the way TN has affected me and including posts from other people as they send them in (I don't have a site that can deal with live posting)? There is already http://www.tna.org.uk/, which surprisingly, has more information on it than the NHS website on the subject, but it is still fairly marginal at best.

I wondered whether more opinions; more sets of symptoms, comparisons would be welcomed? Since few places give information, I wondered whether perhaps you lot out there have been having the trouble I have with dealing with something that doesn't fit the symptoms given on so many other websites. My doctor is very good, but I suspect he's like yours - knows a little but not much - and who can blame him?

We need more information, more people to post their symptoms, the way they deal with it and the steps they've taken to alleviate the pain when it strikes.

Let me know, I'd be really interested to hear from you.

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13 Replies

  • Posted

    I am a 68 year old grandmother and live in Shropshire. One night in Oct 2008 I woke up with a sharp pain on the left side of my face. For years I have suffered with sinus problems, so at first I thought nothing about it. After a couple of weeks the pain hadn't gone so I went to see a GP. He proscribed pain killers. They had no effect. I then went to see my dentist. I have no teeth on the left side of my jaw but following an X-ray, nothing was found . Weeks passed with more visits to GPs who gave me stronger and stronger pain killers (heroin based and addictive) and still no respite. Eventually I had an appointment with the Hospital ear,nose & throat department but saw a registrar who diagnosed nasal polyps. On a follow up visit I saw the consultant who thought from the description of my symptoms that I might be suffering from 'Trigeminal Neuralgia'. He referred me to a neurologist. I had no idea what TN was and had to Google it. Everything started to make sense.

    There followed another 2 months before I could see the neurologist. In the mean time I had been proscribed Tegritol and started on the minimum dose. It stopped the pain but I started suffering from side effects. Lack of concentration, memory loss, extreme tiredness, loss of balance, severe constipation etc. After taking the first pill in the morning, I would have to go back to bed for 3 hours to sleep off the effects. When I was able to go out, sometimes I fell over. On one occasion I fell flat on my face & broke my nose. I never connected my falls with the drug because the other side effects were more disturbing.

    On another visit to the neurologist we agreed to change the medication to Trileptal. Initial results were promising but then all the same problems came back. Overall the TN attacks got worse and I was continually increasing the dose until I was taking the maximum allowed.

    Every time I saw my GP, he advised me to consider surgery. He'd had one other patient with diagnosed TN who'd had a successful MVD operation. Never having been to hospital, the idea of brain surgery was frightening and I dismissed the idea out of hand but eventually the pain was unbearable - even on the maximum dose of medication, that I agreed. My local county hospital does not have a neurosurgery department, & whilst waiting for an outpatients appointment at the relevant Birmingham hospital to become available, I researched on the net and found a 2006 TV series called Brain Doctors about the neurosurgery department at Frenchay Hospital in Bristol. I also found out about The Face Pain Clinic, Bristol Spire Hospital which treats patients privately. I was referred to the Clinic by my GP and in January 2011 saw the consultant surgeon, Mr Nik Patel. He went through my history in great detail including the debilitating side effects of the drugs and recommended Micro Vascular Decompression surgery. He put me on his NHS list at Frenchay and in June 2011 he carried out the operation. There was no physical pain following the 3 hour operation. A neat cut behind my left ear about 3inches long was the only visible sign. I have had no twinges of discomfort from that day on, and after 9 months the scar has almost disappeared.

    The surgeon described, with the help of an MRI scan what had happened. The coating of the blood vessel going into my brain had worn away and as it touched the trigeminal nerve it caused severe pain similar to a sharp electric shock.

    Long term chronic pain is debilitating & depressing. There is no absolute cure for Trigeminal Neuralgia apart from surgery and I can understand why some people used to despair and commit suicide. No one can appreciate how terrible the pain is without first hand experience. It is important that sufferers get a correct diagnosis and referral as soon as possible in order to begin treatment. The consultant told me about patients he had seen who had suffered for 20 years or more.

    As a footnote I would like to add that

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  • Posted

    As a footnote I would like to add that in early 2011 before my operation, I went to see a young NHS dentist who had recently graduated from Sheffield University. During his degree course he had attended lectures about TN. He was pleased to see an example of this rare complaint so early in his career.
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  • Posted

    it really surprises me how dentist appear to be ignorant on this condition. one dentist i had years ago called me cuckoo, which does not help when you know yourself that something is wrong but because it cannot be seen it is dismissed. medication not helping much at the moment thought i was going to be pain free for a while eased of the meds 3days off and started back with pain, back on them again. bit fed up at the moment. i dont want to be on long term medication it cant be good for me or any of us. i used to get long periods free from pain more research needs to be done to help us all. fed up of pain that you cannot take pain medication for
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  • Posted

    Yes, that pain is unbelievable! Whose idea was this?!! I couldn't handle the drugs either so found the TN specialist in my area. Because of an MS possibility I couldn't have the decompression surgery so I had the radial thermal frequency surgery where the burn the culprit nerve and I have been free of the pain. The nerve eventually grows back in most cases so, at some point, will have to repeat it. Before this life saving surgery, a neurologist gave me the drugs: gabapentin (which stopped working) and then oxcarbazepine which got rid of the pain but completely messed me up with terrible side effects. Then he acted like he wanted me to stay on the drugs and wouldn't give me the name of the surgeon so I found him myself. I say do the research and have a surgery, there are about five, get off the drugs and get your life back!

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  • Posted

    Hi Nick

    My son has TN and he is like you has both sharp and dull pain and the different consultants we have seen constantly contradict each other, which means Daniel gets passed around rather than getting the treatment he needs, this has caused long delays in getting him treated and has meant many weeks of waiting while consultants try to agree the best way to move forward very frustrating at times. Yes i feel after talking to other people with TN they have gone through the same just because they have experiened both types of pain so it is not so uncommon as you may think

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  • Posted

    Hi Nick, 

    I can relate to all the symptoms mentioned in your discussion. I am now 70 years old and have had the condition for the last 8 years or so. The difference with mine is that I cannot have an MRI scan to eventually get the operation they do. In 1995 I had an aneurysm bleed on my opthalmic artery on my right side and had it clipped. Then six months later my left side had the same treatment, as a preventative measure, in case it also bled. In effect of this I cannot have an MRI. The clips prevent this, of course, because an MRI would kill me!

    But, the TN continues. And the drugs I have tried just made me feel "spaced out"! I stopped them after a few months and told my doc that I would rather have the occaisional sharp pains on the left of my face, and just under my nose, than have the effects of the drugs.

    I also had tooth problems with it, and was referred to the dental hospital where they could not make the pain appear with all the prodding and massaging of my mouth they tried. So I was lastly referred to a specialist in another hospital who had the dental notes with him and I told him how the dentist had tried to activate the nerve in my face without success. He then said that I had atypical facial disturbance. That made me think that I was not being taken seriously and I said so. He told me that I had a very rare condition and as I had not been taking any medication for it and had been managing without them that there is no further treatment available. So I just have to grin and bear it. That's how mine is different. It appears that it is not to be cured.

    I agree with one poster that more research is needed and dentists should be more informed than they are of the different aspects of this nerve pain. Good luck to everyone.  

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  • Posted

    Nick,

    I am responding to your post because your symptoms seem more like what I am experiencing.

    This has been going on for about two weeks now (although I'm pretty sure a couple of "bouts" have been misdiagnosed during the last year, leading up to this). I feel a severe ache, and throbbing that seems to generate in my left jaw, and move north to my left temple. Mine usually includes a headache on the left side as well. It seems like the most instant trigger is eating, especially warm food, however, sometimes it just shows up to remind me who's boss.

    I had gone through all of the dentist stuff, and finally got diagnosed with TN from my primary Dr. It is just that my symptoms don't seem to match the majority of patients. You can push on my cheek all you want. That doesn't hurt. The wind blowing on me is fine as well.

    My Dr. has prescribed an Carbamazepine, an anti- sezure  med. I just started with this yesterday. I don't feel hopeful that it will work, and worry about the side effects.

    Have you gotten your under control? Any suggestions?

    Thanks,

    Rick

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  • Posted

    I think everyone's symptoms are slightly different.  Mine doens't involve wind either.  Mine is mostly eating and sometimes talking, sometimes nothing triggers it....like in the middle of the night waking up screaming in electric shock pain.  The drugs helped at first, then stopped AND I felt drugged and wanted off the drugs!  Got one of the surgeries, but had to contact the surgeon myself because the neurologist wanted me to stay on drugs....unbelievable!  A big pharma rep????

    Anyway, the radiofrequency surgery did the trick, who it came back 7 months later.  Am on month 6 of the second surgery and here's hoping!  He did a stronger heat this time so hopefully will last longer.  There is always the possibility it won't come back.

    I say, go for a surgery and get off the drugs.  Find the TN surgeon in your area who has done lots of surgeries and has experience.

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    • Posted

      Thanks for that info on surgery, but I have no idea where to go and ask any one about it. The GP's and the specialists I have seen have never even mentioned about surgery, I have only read about it on the web that others have had it. How does one get started on this quest to get surgery then?

      I can be anaesthetised but cannot have an MRI scan due to my previous operaton to cap blood vessels on my opthalmic arteries, both sides. If there is anything I could try to sort out this ridiculous problem then I'll have a go. Let me know how to get started with an enquiry somewhere. Perhaps you'll tell me to go and talk to my GP??

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    • Posted

      It is over 3 years since I had my MVD operation which has been a 100% success.

      Depending on where you live in the country. you have to find out( on Google) where your nearest neuro surgery hospital is. (probably part of a university). There will be a list of consultant surgeons working there and their specialisms. Work through their CVs and check who treats TN/facial pain. With this info go back to your GP and ask him to write a referral letter to the surgeon. He is duty bound to. You have to decide how desperate you are to get a diagnosis. I was not prepared to wait for a NHS appointment  and opted for a private consultation. It was the best £200 I've spent. The surgeon spent at least 30 minutes  listening to me & talking about my condition. I could never afford to have the operation done privately so he agreed to put me on his NHS list of operations, and I drove home much relieved. He wrote to my GP about the treatment he recommended (with a copy to me). If you can't have a MVD operation he will tell you about suitable alternatives and in any case because he's a specialist he will be able to advise on the most uptodate procedures.He told me he performed approx 150 operations a year for TN . One of the advantages of a private consultation is that having got the agreement of the surgeon to treat you there are no more consultations necessary until you are summoned for the operation. If you refer to my entry at the top of this forum there is more detailed information. I hope this helps.

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    • Posted

      Thanks for that info, cfb. Congratulations on your success. I live in the south west. We had a very famous hospital, with a well established neurological department. The hospital is closed. All campaigns to save it failed. Our nearest hospital now is via a busy town. All staff were transferred to it from the closed one. I will do some research and make the necessary enquiries as you have done, and see how it works out.
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    • Posted

      Thanks for offering this info. Couldn't have done it better myself.  Agreed!

      My bottom line, do the research, get research savy...I found my answers that way.  I had to do it all on my own because my neurologist refused to give me the info.  He wanted me to stay druggged!  But, an search on line, got me to where I needed to go and now, I am covered when the TN comes back. 

      Don't be afraid to go outside the "box" to get your answers.  YOU are in charge, not any of these doctors.  It may even mean, going out of town. I don't know where you are but the OHSU in Oregon has Dr. Kim Burchiel who will take care of you.

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    • Posted

      Hi cfb, further to my reply some hours ago, I discovered another thread under discussion on here where you contributed to about your operation. I hope this copied and pasted link works, just in case you want to read it again, and others might like to read it too, here is the link:

      https://patient.info/forums/discuss/microvascular-decompression-37331

      I was talking about Frenchay Hospital in my previous post, which is the hospital that you went to! I am glad that hospitals can be named on here! Mystery solved over which hospital I was on about - which has recently closed and the area sold to developers. Such a shame and a great loss to our community being easier to get to than Southmead through a busy town, and Frenchay had its own heliport as well. A great loss to us.

      Hope it's ok to mention that other thread. It all helpful.

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