Foggy's "Invisible Illness" Support
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Possible Atypical TN?

hi guys, I have been suffering from a constant, and I mean CONSTANT, dull aching/irritating feeling just under my eyebrow on my left side, this pain is also felt (although much less) behind, around and underneath my eye along with sensations down the side of my nose. There is also the occasional ache around my ear (to the front just around sideburns). I'm starting to lose the will to live with it - been going strong for 6 months now despite various meds from docs - does anyone else have or know of these symptoms? Could this be a typical TN??

I'm 32 btw

thanks

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Hi Phillips123, I was diagnosed with atn but as I have learned throughout the years; they really do not know what is standard symptoms for it. Other than not having excruciating pain and it stopping like Typical TN. Mine is mainly on my right side wisdom tooth but affects my temple ears and eyes. Mine has also massively reduced. I didn’t want to go down the path of medication so I sort out specialist dentistry. 3 years on and I am able to function properly now; no temple pain, massively less headaches, massively less tooth pain and no brain fog or nausea. They also tested me for MS which neuralgia can be a symptom but I was clear. You could also go down the path of Upper Cervical Chiropractor which put me on the path of becoming better. Good luck in whatever you choose and a strong and healthy life to you.

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Hi

I have TN and have been successfully treated with the medication Gabapentin. Some people have side effects and feel tired/dozy. I am lucky and you just have to experiment yourself with the number of pills you take. At the beginning I was taking 12 a day, but have got down to 3 - good luck and it is a terrible pain/affliction to have. It is hard for people without TN to understand as we don't have any visible problem. There are also TN support groups online and well worth looking.

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Hi. I have bilateral atypical trigeminal neuralgia. I have had it for 9 years & struggle with it. I have pregabalin 600mg which helps with the intense burning but had to come off tegretol. It is in my jaw, ear, teeth & gums. Triggers are temperature changes, wind, cold, chewing, brushing teeth etc. It would be a good idea to see your GP & maybe a referral to a neurologist. I also have chronic paroxysmal hemicrania on the same side. That is in my eye, behind my eye & in my temple. Excruciating flare ups daily. It is rare. Another possibility from your symptoms. Definitely see your GP. It responds to indometacin only. Sadly for me its caused bowel problems so I can't have it. Good luck, I hope you get some help & some answers xx

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Thanks, yeah I've had the indometacin to no avail, I'm starting to worry its something much more serious tbh - its the fact its constant and just will not go no matter what i do/take its affecting my relationships and my college work.

I really appreciate the replies, thanks all

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Sounds like it

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Hi. I was diagnosed with atypical TN for a while. Then I saw a neurologist and he changed my diagnosis to trigeminal autonomic cephalgia. Though I don't think that is the correct diagnosis either. It doesn't matter too much as the recommended treatments are the same either way. However, I had a bad reaction to meds and I now have acupuncture every 6 weeks. It keeps the pain at a manageable level, though it never truly goes and if I don't have acupuncture after about 3 months the pain hits the unbearable level again.

My pain is in the lower jaw, upper jaw, up to ear, behind the eye and behind the cheek bone, all on the right side. I have devised my own pain chart which is more about characteristics: range is from "itchy burning" to "knife stabbing in my face and being constantly twisted".

It's probably worth getting a proper diagnosis though. Similarly I was checked for other things such as MS just to rule them out. I also wanted a diagnosis as the dentist didn't take me seriously about the pain until I got a neurologist to agree that I was genuinely in pain.

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This is exactly my problem regarding diagnosis, went back to the dr yesterday, amitriptyline not really working after 6 weeks of it, so changed me to beta blockers now propranolol! He's finally referred me to a neurologist but Imo a referral and scan should have been first to rule out other conditions its so frustrating because my symptoms don't fit the tick box forms! Grrrr

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Unfortunately even with a diagnosis I still don't fit the tick boxes. Head pain and in particular nerve pain in the head are very difficult to both diagnose and to get the right treatment. It seems that many of the different types of head pain will have the same set of treatment protocols available. This is why I don't worry too much about not entirely agreeing with my diagnosis. Just recognition that I have a genuine condition that means my trigeminal nerve is not working properly anymore was enough for me. I was already having acupuncture at the point of diagnosis and there were no viable suggested treatments after diagnosis to the ones I'd already been offered or tried without success. Also in my case there was a pretty obvious cause as it all started after a dentist drilled into my nerve then repeatedly tried to cover up his botched job, somehow managing to botch it up even further.

There does seem to also be a thing where GPs leave it for a while to see what happens. In some ways I understand this because it means that you have some info to give to the neurologist (certain medications not working can actually help with diagnosis). But it is very frustrating when you have to wait because the pain can be so consuming. Also, like I said, in my case there was actually a known cause and I think I should have been sent to see a neurologist straight away. The neurologist did tell me about an operation that I could have considered if I'd seen him a lot earlier than when I did. Whilst he did say I could speak to the surgeon about it he also basically said it wouldn't do anything for me and potentially could make it worse. I think you have to be within about 18 months of the original trauma.

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I have just read your story & I could have written it myself. Mine has been caused by the dentist doing a root canal into hooked teeth. I also have trigeminal autonomic cephalgia (chronic paroxysmal hemicrania), Atypical TN & neuropathy. In the right side of my face & like you surgery isn't an option.

I hope you are as well as can be & phillips123 gets some help & some answers x

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Hi Coshau

That’s a first. I usually end up explaining it to people for ages as they look at me in horror!

How long is it for you? Its been 12 years for me. Do you have any treatment?

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I was surprised when I read your story too. I've had it since 2009. I first got an attack of TN earlier than that when I was 23 but it was the botched root canal in 2009 that has been the cause of it all & now like you its permanent & severe. I've been to so many hospitals & am now going to a new neuro who specialises in hemiplegia as I was also diagnosed with chronic hemiplegic migraines that mimic a stroke 4 years ago on the left side of my body. Its been a neverending nightmare. Had my 1st botox treatment 3 wks ago & that's really helped with the migraines but there is nothing for the CPH as I am intolerant to indomethacin. So until there's a cure there's nothing left. I'm on pregabalin which helps the burning etc of TN. Taken off tegretol as I had an accident & broke my back while so drugged up. So its not good. It is nice to know someone else understands how bad it is however I am so sorry to hear your just like me. Stay strong 💞💞

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Not heard of botox as a treatment. How often will you have that? I also stopped Tegretol as I kept falling over and walking into things. Couldn't work whilst on it as I didn't feel safe to drive and therefore couldn't get there. But the world was just spinning around.

Also for me the final straw was a botched root canal after various other botches prior to that (leaving some infection in the tooth and dumping a filling on top after drilling through the nerve, etc).

When you say the chronic hemiplegic migraines mimic a stroke what do you mean?

Although I have to go to acupuncture every 6 weeks I have found that it is worth it. The pain never goes but it does reduce it to a more manageable level and I don't have any side effects from it.

I have found several issues over the years. Firstly it took years to get anyone to take it seriously. I kept being told that I should be able to tolerate the pain and forget about it (ha ha ha ha because constant pain that feels like someone is stabbing you in the face and twisting the knife is just so easy to put up with).

Also, people have some difficulties understanding the quirks of this type of pain. Like the word 'constant'. For some people 'constant' seems to mean pain at some point every day, so for some part of the day there is no pain. When I say 'constant' I mean every second of every day for the last 12 years with no sign of that changing. The variation is in the severity and the character of the pain. I have invented my own pain scale so that if ever anyone asks how it is then I just tell them which bit of the pain scale I am on, i.e. 'Today is kebab stick' (it feels like someone is stabbing a kebab stick repeatedly in my face). The next step up from that would be 'twisting kebab stick' and a step down would be 'twisting cocktail stick'. Fortunately with the acupuncture I have been able to keep the majority of days as being 'general burning with a dash of annoying itchiness I can't scratch'. I discovered that without acupuncture then after 3 months I'm back to 'constant twisting knife with retching'.

I've also found that people are unable to comprehend that painkillers don't work for this type of pain. "Oooh when I have a bad headache I take some paracetamol and that does the trick". Hmmm.

Also, people find it difficult to comprehend why eating is not always that much fun. Again, hmmm.

Ooh I could go on all day, but best not. The sun's shining and I'm about to take my dog out for a walk in the fresh air. The breeze is no longer icy and therefore it shouldn't feel like I'm being stabbed in the eye!!!

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