I have just been diagnosed with trigeminal neuralgia disorder and feeling a bit lost

Posted , 5 users are following.

Hi all, My name is Shane, i am a 34 year old male and I have joined this group because I have recently been diagnosed with trigeminal neuralgia disorder and am currently going through testing with my gp to ensure there is no other issue that they may be missing.

My issues started on 17/02/16 when I collapsed at work. I had an anxiety attack once I came round. I went home to rest then found in was extremely dizzy with pressure throughout my head with a numbness in my left temple. I was diagnosed with benign paroxysmal positional vertigo which then progressed in to glue ear then was told I had a problem with my eustachian tube and then I was told that I had acute sinisitus. This is where this part of my ended after nearly 3 months. I was given numerous nasal sprays and medication and finally was given nasal drops which cleared all issues and was able to return to work on a phased return whilst continuing with a steroid based nasal spray.

By the end of my first week back at work I was hit with a major migraine which kept me in bed for 3 days (Friday to Sunday), I was sent to the out of hours surgery on the Sunday where I was told I was suffering with cluster headaches and was given two 100mg of sumatriptan which did clear the migaine but was left with numbness around my left ear and numbness in my left temple. I was still getting random shocks of pain in the temple area. This flared in the evening and had an extreme tingly heat sensation right down my left side of my face to my chin. It felt like I was having a stroke as was unable to feel my face properly. I monitored this but was no drooping of the face so remained resting. Monday I booked an appointment with another gp who is experienced in neurology who said he believed I had trigeminal neuralgia. I was prescribed amitriptyline 10mg rising to 50mg as and when I needed it. Since then the shock like pain in my left temple has eased but I have been left with the following symptoms:

Pressure in head - with shortness of breath and tight chest with slight pain between shoulder blades (On off symptoms usually when sinuses are blocked)

Pressure with burning sensation in left temple and above left ear (Sometimes just a slight pulse feeling)

Sore throat (Evening)

Dripping noise (Sat in certain position in bed and usually when sinuses have been blocked)

Heavy head feeling

Neck pain and back pain (Worse when upright or been quite active eg whilst shopping)


Headache (Sometimes turns to a migraine) 

Jaw pain (Left side, struggle to open mouth wide, popping/cracking in left ear when yawning)

Sickness (Usually from nowhere)

Muscle spasms (Neck and left arm with left arm feeling slightly heavy)

Tingling in hand (Left)


Memory issues ( Confusion about what I done that day/Can't remember conversations or what happened in a TV show watched that eve)

Acid reflux (Night-time)

Vivid dreams/hallucinations (Believe to be side effect of amitriptyline)

Tickle in throat with dry cough (Evening)

Heart palpitations with fluttering feeling and shortness of breath

I have just had an ECG and had a blood pressure monitor fitted for 14 hours and am waiting for the results. My next gp appointment is on Tuesday 6th of June so can update on what happens there. I also have an ENT appointment booked for 5th August for the sinus issues.

Any advice is welcome as at the moment I am very drained of this whole experience, I do often get down and feel very emotional and I do worry that I may end up losing my job or not being able to continue with my current role as this is a fast paced role and I tend to have to do multiple tasks and have random issues thrown at me all day. I am hoping to start the ease back to work again but with the symptoms I still experience I am finding it tough to stick to agreed work times/days as I don't know what each day is going to throw at me.

A bit of an essay and I'm sorry if its all over the place, just trying to remember everything from the past 4 months.

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5 Replies

  • Posted

    Hi Shane

    I'm experiencing similar but not quite as heavy. Every day I'm getting an inflamed feeling down the left side of my face, aches and paid s around ear particularly at front, pains in gums and teeth and stabbing like ice pick type headaches in and around the skull. My jaws seem to go tight and struggle to open wide. General feeling of fatigue.

    I've had a ct scan done of sinus and all is clear and there's no abnormalities in the brain (didn't even know they were scanning the brain.) I've been on amitripyline but it makes me tired and dozy the next day.

    I also have a stiff neck on the left side and shoulder. Don t know if linked. I'm waiting g to see ent specialist again soon.

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    • Posted

      Hi Richardvilla,

      You are experiencing the same symptoms I had a few weeks back, these then progressed in to other symtoms so you may find this could happen. It may not but it will be good to know if they do start that someone else has them too and the dr still says trigeminal neuralgia disorder.

      The dr I have now has a good knowledge with neurolgy disorders so I am now happy that I have the right dr on my case. Things are slow but he has to try everything he can first so I guess time will tell.

      I would try and find a gp who knows neurology as other gp's may not understand and diagnose you with anything from anixety/stress or migraines.

      I have spoke to my dr today in regards to Amitripyline and side effects and he is happy for me to continue on them as they are helping with the pain and that is the important thing at the moment. I feel really grotty and really not sleeping well but I have less pain than with them so I guess I can deal with it for now.

      My neck and back problems came after being stuck in bed for days and really not moving much so this could be from lack of movement, if the dr says it is linked to trigeminal neuralgia I will update you.

      Are you managing normal daily activities? Work? I have bad days and some better, I am off work again at the moment so side effects from amitrityline are not effecting that but I would not be able to comit to work at this time and with these side effects.

      If you want to ask anything else I will reply and try to help as much as I can but I am still getting used to all this myself so please don't think I am a medical genius ;-) 

      Hope you get help soon, keep me updated.

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  • Posted

    Hi, Shane,

    I have had Amitriptyline for some time now for a combination of issues, namely

    Connective Tissue Disease (as yet not clearly diagnosed) and also for TN, dose was increased to 50mg and I have also been started on Carbamazepine. I sleep like the dead - which is a good thing as I had been just about surviving on 2 - 3 hours before getting medical help (which as a nurse is shameful!!) - however, I have such realistic dreams, including ranting at my son for coming home at stupid o'clock that when I go to check he's alive and sober (!) I find he's not actually home and has stayed with a friend! I have been to work and done shopping and had some very surreal conversations whilst asleep but to be honest I will happily live the dreams as long as I get the sleep!

    I have found that the majority of the side effects of these drugs, including others that I take, are indistinguishable from my many and varied health problems, so I just carry on and take the pills and have gradually felt better over the last year. After almost 10 years of feeling like death warmed up it is a relief to feel a bit bad as opposed to death warmed up.

    I've been down the positional vertigo route, deeply unpleasant and ultimatley the root of my current problems with CTD.

    Rest assured that when you get the right doctor or specialist and of cours treatment it will make a great deal of difference.

    Best of luck.

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    • Posted

      P.S very tired, just worked a night shift and have had very little sleep today - very itchy rash, yet another symptom to add to the list, so apologies for poor spelling and missed words!
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  • Posted

    Hi Shane your not alone on this one .... numb right side of face, lighting storms shock sensations running from my ear to chin..lip is like i have been punched .... the lip has constant spasms feeling... sore ear so much so i went to a different doctor because i asked my normal gp if there was something living in my ear and he said it was a symptom. .. gp no.2 said the same thing... it feels like im going mad .... dreams out of control so much so i turned my bedroom upside down n didnt have a clue what happened when i woke up ... the things that are going on is endless ... i just wish it would p*** off


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