Newbie Seeking Opinions from TNers!

1

Hello to Everyone!

I hope it is okay my being here? I have not been officially diagnosed with TN, despite having a specialist facial pain dentist & a neurologist on the case.

I would welcome any comments or advice here.

Like everyone else here, the story of my pain is long. Suffice to say, I am at turning point (I suspect) now.

At the moment, I find myself overwhelmed with pain and despair.

My GP view is that I have TN. I am going back to see him again tomorrow & the poor guy is likely to see more weeping!

I have had some form of facial pain since mid-2012. I had not had any recent facial surgery or dental work near the onset. I do not recall any injury I may have received around that time. The time I first experienced facial pain did coincide with the end of a huge and traumatic life stress: a legal case that had lasted for 2 yrs prior. I required psychological counselling to help me survive that. I have a long history of depression and chronic health problems, including migraine.

Late in 2012, an MRI of the brain showed no abnormalities. [CORRECTION: I have just learned that MRI was specifically of the jaw. Not sure why I thought it was more?!] After about 8 mths that 1st bout of face pain seemed to resolve itself, but not before I had been to see an ENT specialist - because that pain near my ear had been so concerning - to only be incredibly humiliated by that doctor’s response. I ended up feeling that I had ‘dreamt’ or exaggerated the entire thing. His suggestion was that I had eczema of the ear canal. I probably do, but it is just that I foolishly persisted with ear drops when I needed other specialist care. Grrrr!

My symptoms began to return after 6 mths. Another legal problem began and my stress levels became high once more. Other than seeing my dentist for what I was certain was a tooth problem (when there was none) I was reluctant to acknowledge my pain had returned.

Months went by while I tried to figure out what to do & how to avoid further humiliation. I eventually found a dentist with a facial pain specialisation. He took one look at me and said “Don’t worry - everything is In hand now.” By that time, I was in such a mess he said he prescribed medication to less than 5% of patients, but he was prescribing me with Gabapentin. Of course, it was winter & at home I was wearing hand knitted balaclavas to try to avoid contact with the cold. Away from home I wore scarves wrapped around my neck, then around my head!! I no longer cared! He was sure I had TMJD but wanted me to see a neurologist.

The neurologist added Verapramil to the meds & increased the Gabapentin dose. Between them they decided it was likely I had facial migraine. This diagnosis no doubt assisted by the fact I had suddenly experienced a number of migraine like incidents with nausea and vertigo. Another MRI was ordered.

There was a 6 week waiting time to have the MRI. I went along to the test - about the 4th or 5th one I’d ever had - without a worry. Something kind of went wrong as I had to abort the test. I had a panic. It was horrible! I cancelled follow up specialist appointments, waiting for when I found courage to have that MRI.

By then, I had been on the meds so long, they started to work, or so they did for a while. Maybe once in a while I’d have a sharp ‘jab’, but it would soon end.

In February this year, one day I had a huge ‘jab’ and knew immediately things were on the move. I had planned to go back for that MRI but kept delaying - conveniently!

That brings me to now:

I am awaiting another MRI appointment. The 22nd April is the earliest available date.

My medications are:

Gabapentin 1200mg
Tegretol 200mg
Verapramil 240mg

Symptoms:
‘Stabbing’ pain in front of left ear;
‘Electric shock’ feeling running along left upper & lower jaw;
Feeling of ‘tooth’ pain to several upper left teeth;
Sharp pain to left side of face, especially on a slight delay after touch;
‘Burning’ feeling in a line from above the ear to up near top of skull.
Bad metallic like taste to mouth, which I thought went with having a ‘bad’ tooth!

I describe the situation to my beloved thusly:

It feels like I have a slightly mislocated ear infection plus a migraine that has moved over to the side of my skull & that I am being regularly bashed on the side of my skull with a lump of wood while being stabbed repeatedly in front of the ear with a jagged piece of glass at the same time as being poked hard in cheek & jaw with a stick!

Symptoms have withstood increased meds & can still be felt through the sedated haze of all this medication.

My GP wants to add additional pain relief in the form of Endone.

As of a few days ago, I don’t think I can cope much longer. GP wants to see me to increase the Tegretol while awaiting MRI.

Life as I knew it has ceased. I am no longer active & can only manage a few hours upright a day. My concentration, memory & attention span are extremely limited.

I fear two things:

  1. This is all in my mind.
  2. This is all not in my mind.

Does any of this make sense or sound familiar?

How do you all cope when you know longer feel you can?

How do you make decisions about pursuing medical assistance when your brain function is greatly impaired?

P x

2

I get you and understand. It sounds like classic TN- A good Neuro will diagnose you and formulate options. Med management is the first option then surgery, either gamma knife or MVD surgery. The key at this junction is a Doctor that is proficient with facial neuralgia

3

It is definitely okay to be here. TN is hard to diagnose. This is not in your head. This is trigeminal neuralgia. I am 22 and mine started 2 years ago. I had some doctors say it was tn and others thought I was making it up. They couldn’t actually prove I had tn until I went in for mvd surgery and they seen that it was tn. It didn’t show up on an mri because this isn’t something that normally does show up. I am in horrible pain all day everyday. I throw up because the pain is so bad or I cry sometimes. It is tough having this. You just have to keep pushing through it. I have great and supportive people around me. Of course some people out there think I’m making this up but I’m not. I can try to explain what I go through but truly the only people that understand are others who have tn. Some days are going to be worse or better than others. It’s not fair that we have to live with this but we have to just try to remain hopeful. I have tried every medication and had mvd but none of these were successful. I pray that you find relief. You need to find doctors who are very familiar with tn. If you find one that doesn’t know what to do just move on to another one until you find a doctor that will be helpful.

4

It may be a good idea to keep a journal, and also to bring someone with you to the doctor. ..To speak for you, when you are not feeling so good. This way all of your concerns can be addressed. Many folks do this. Hang in there, things can change and evolve with TN. It can take awhile to find the right dosage and right combination of meds for you. I wish you the best, Min

5

Penelope you could have written my story, I identify with so many things you have said..your timeline is very similar to mine although I have taken the next step in the long journey...past 3 years for me, going in circles from Neurologist to facial pain specialist, to dental surgeon and back again.

I have had the mri and my final diagnosis (after TMJ from one, regional facial pain from another nuerologist still felt wrong) last month and as I suspected all along TN. I just couldn't find any doctor who understood the depth of pain and had any factual information or experience with TN. I too was at a turning point and felt like I was about to break, my life had changed so much and I was not functioning. I still have those days now, but hopeful that my meds will help as I increase.

I made a decision late last year that I would seek treatment from the most experienced TN doctor I could find nearest to me, 3 hours away, and asked my GP to write a referral to him. I then rang ahead to his secretary and made it known I would like to see him. At first I was told no, you need to be a private health cover patient which I am not, I didn't give up I knew he was the one I needed to see so I wrote a letter detailing my pain and asked if there was a possibility he would see me. No answer at first. One day a few months later I came home to a letter that stated a time and date for my appointment in March and again last month. I then had a mri on the best machine in my state, and afterwards my Neurosurgeon diagnosed me with TN 1 TN2 bilateral. The downside he advised me surgery would only make it worse, I appreciated his honesty even though it broke my heart..I cried before I even left the office.. the upside I have a diagnosis from a respected and experienced Neurologist who gave my local doctor much information and medication plans to move forward in my treatment. I returned to my local doctor to find he supports my medication increases and understands TN and the seriousness of my pain.

You are welcome to send me a message anytime, the same for all you lovely people coping with TN..I thought I would write this with thought that anyone reading may think about how to move forward when things seem at breaking point, my personal experience was diagnosis/referral helped immensely.. for some it may also give some help when seeking pain relief from doctors who haven't seen someone in pain from TN before. Hope this long spiel can help someone xx

6

Wow! I am sorry to hear about your pain but yours sounds exactly like mine. I also have the metalic taste on the left side of my tongue and have never seen that mentioned on this site before. Gabapentin didn't work for me. Tegretol did at first, but is decreasing in effectiveness now. I find that lately accupressure and meditation have really helped but my symptoms tend to be better in warm weather anyway. Check out Jon Kabat-Zinn's mentalization program. I can help you turn these negatvie things positive. I understand about your feeling of being mentally impaired. You may need a strong support person who really understand what you are going through to help you through things.

7

I don't know how to thank you all for the lovely welcome!

There is so much information provided by you wonderful people....I need to work through it all and come back soon and ask lots of questions. Suffice to say, I can't say how much your responses have meant everything to me.

Thank you Edster, Kayli, Min, Mel77 & Wadams!

Although it shocks me (no pun intended!) to know so many are out there in pain, I do appreciate the understanding you have shown.

Here my situation seems to be worsening by the day. I am only upright for maybe 2 hrs a day. The pain seems to be spreading and impervious to the medications. The pain seems to be on the march. I am SIX days away (not that I am counting!) from that dreaded MRI.

Would I be pushing matters if I ask some more questions prompted by either your comments or my seemingly worsening state?

* Humour me here: what is the worst that can happen in the case of TN if left untreated (outside of prescription medicines) when the pain is extreme? Is there a TN emergency equivalent of stroke, aneurism?

* While I am talking extremes: just how often is TN an early symptom of MS?

* Am I correct in my reading that the various surgical procedures have a low instance of success?

* Are there many other Australian TNers here?

* Am I right in now thinking that 'suicide disease' is a misnomer of sorts? Years back (when the pain originally began) I diagnosed myself with the kind assistance of Dr Google. Everything about TN fit my symptoms, but for the fact it was often described in such extreme terms, leading me to believe I was wrong. 'Surely something described as the 'suicide disease' must mean rolling on the floor screaming continuously type pain?' I reasoned and so gave up pursuing that line of inquiry.

* Ears: is having seemingly swollen ear 'holes' near the afflicted area a symptom?

* Speaking of symptoms, are things like a feeling of pressure in wearing eye glasses or resting head on pillow familiar TN-type issues?

Thanks again everyone!

P x

8

Hi Penelope,

Some answers I can help with but others I don't know and am interested to know, I am glad you have brought them up :)

There is an Australian NZ group here under the groups tab, by region tab. There are also local support groups you can find online in Australia eg tnaaustralia.org.au and you can join via email. Personally I can't make it to the meetings for tna but receive a detailed newletter with minutes on the meetings, suggestions, stories and doctor reviews from actual patients etc.

I am in rural Vic, about 3 hours east of Melbourne in East Gippsland. I have come across 2 others within my area that have TN, and one has had MVD surgery which was somewhat successful for TN1. They both found it very hard to get a diagnosis and find the right doctors/specialists/experts for TN. I feel as though it isn't common as not many GPs or dentists have seen it before, even my own GP had never come across it.

Without any medications or pain relief I do roll around on the floor and it's not pretty..the pain is excruciating and uncontrollable tears pour from my eyes. I don't underestimate the importance of taking my meds on time, without fail, now after a few lapses and then attacks.

MS I often wonder about, have had another doctor query me several visits regarding MS symptoms, told me early MS suspected for other problems in my health, and my current Rheumatologist has told me fibromyalgia and TN often go hand in hand...I also have Osteoarthritis and chronic sternal/rib pain called Costochondritis which both often coincide with Fibro. Point being I wonder whether years of nerve pain deteriorates the nerves themselves? I have optic nerve issues too, early glaucoma so wonder where all of this is headed. Nerves!! It's like a puzzle and putting the pieces together over time huh.

Funny you should mention your ear holes, the hole itself my right ear is half the size of my left which is my side that started first. I can barely fit a cotton tip inside it, (which of course I know I shouldn't do, and I avoid as it triggers pain) and my gp said it isn't normal size but not abnormal. I feel it's swollen internally towards the front. My hearing tests are normal.

Here's a wierd symptom of mine: I can hear whooshing sounds when I have a needle with mri dye going in, or blood test blood out needle, or even when having an iron infusion drip, little pops of woosh woosh woosh, it sounds like those pop rock lollies crackling inside my ear. There's nothing in there I'm told :P

9

My mother has suffered with pain from TN and has found the best two meds that help are Lyrica and Trileptal. She is presently considering a balloon rhizotomy with Dr. Paynor in Indianappolis. I would love to hear from anyone who has had this surgery and hopefully a positive outcome. Not to imply negative experiences are not welcome. It sounds very hopeful.

Hope to get responses.

Thanks, Donna

10

All of the prescription medications did not help me at all so I don’t take anything for it. My trigeminal neuralgia just gets worse everyday which is what happens. Like right now I can’t even talk. Like you my pain also spread. It started just in my teeth and now it is in the entire left side of face, teeth and gums on the left, left eye, ear, side of nose. Mine spread rapidly. There isn’t really like a tn medical emergency. It’s just horrible pain. I get in so much pain that I want to go to the hospital but there isn’t anything they can do so I just stay home and hope the pain calms down. I have tn1 and 2 so I’m in constant pain but the intensity goes up and down.

I seen a new doctor on Tuesday and he said that tn can be a sign of ms but it isn’t really common. He said to is usually just tn alone that just randomly developed. But that does not mean ms or something else isn’t involved. There is always a possibility.

Some people have successful surgical procedures but mine wasn’t. I personally think a medical procedure is always worth a try for tn because if it is successful that is wonderful. If its unsuccessful at least you tried.

I live in the U.S.

When mine first started and I looked it up on the Internet and started reading about tn I said there is absolutely no way I have that because it just sounded so horrible. When the doctors said trigeminal neuralgia I couldn’t believe it. But now my pain is on the screaming and crying level. A condition classified as the suicide disease just seemed like something that I definitely didn’t have so I just started looking for other answers like you.

When I lay down I have a lot of pressure on the left side of my face. Laying on my back seems to lessen the pressure but if I lay on my right side the pressure it puts on the left side is horrible so I just have to lay on my back.

I hope this is a helpful to you.

11

Hi Penelope,

I have been exactly where you are and had those same feelings. I actually went to a psychotherapist who greatly helped me change my way of thinking; specifically he helped me to separate myself from the pain that I was feeling. That simple insight nudged me into researching everything I could find about TN - here in the articles and postings, and in the recommended book, 'Striking Back'. While I'm still a bit in denial of the doctor who told me I will live with this forever and just need to learn to manage the pain, actually, that is what I am doing.

This is not in your mind. It is real. When my brain is fuzzy, I write notes before I see a doctor. I bring my husband in to the appointment with me. I have advocated for myself to request some medications recommended here.

Currently I have had about a week of good days (level 2 or 3 pain instead of 6 or 8). I attribute this to the combination of amiltriptilyne and gabapentin. Each person has to find her own solution; there is not one size fits all in this crazy world of TN.

Don't give up. That is the strongest message in the book I mentioned earlier. There are many many solutions to this terrible pain that we are experiencing. We just have to keep assertively searching to find the one that works just for us.

I hope you find some answers. Keep us posted.

Rissmal

12

Hi Again Everyone!

Thanks Mel, Jane, Kayli & Rissmal for your informative responses. I love how willing everyone is to share here. I, alas have not been the amazing support to others I had planned on being.

Here, life remains a painful blur. Finding sleep hard to get despite the mountain of sedative type drugs and feeling a bit nauseous and so on. A familiar story I am sure!

Yesterday was a milestone day: I managed to have that MRI that I aborted last September. I need not have worried: it was a larger & very well lit machine. I ended up being concerned instead with my nausea (would I make it thru?), and the fact that the head gear - the padding they wedge your noggin in to stop it moving - was pressing on what I believe to be the root of the trigeminal nerve & the back left spot of my head - whatever that bit is -both were causing a fair degree of pain.

It’s been a strange 24 hrs since. I phoned in late today to arrange my GP appointment in advance only to be told results are in (well ahead of time) and I can get a same day appt (will wonders ever cease?) so in 2 hrs I will have some kind of results.

While I know it it preferable to have nothing wrong, I have quite a FEAR that the MRI results will be ‘normal’ & that this condition will remain unexplained. It has happened to me sooooo many times before. I am so worn down by this chronic health nowhere land.

Worse still is the thought that I have enlarged or somehow enlarged the whole rotten thing.

I am not sure how much longer I can exist on this cocktail of prescription meds, unable to cope with any form of stress.

I wish I could simply have a clear scan and some answers.

How is everyone else travelling?

P x

13

Penelope, I am living in a sleep phase at the moment as well, in fact I just woke up. I sleep during the day when my children are at school, I feel like I am sleeping my days away :(

I know those feelings about this appointment too well, I called it my "big" appointment like it had a finality to it. I'd been chasing the answer for 3 years..I wanted a confirmation this was TN1 and TN2, no-one would put their name to diagnose formally, not a speculation, was there anything that could be done?

For me the feelings are a mix of hope, of dread, anticipation and just wishing so much that there will be an answer where my body is taking me..I hope for you there is some form of answer today, once you have heard the result, something or nothing, and had a few days of processing it you will move forward..there is strength in just knowing..from my experience with this appointment I went in and was prepared that I would probably cry and feel a range of emotion regardless of the outcome afterwards... I will be thinking of you over the next few hours for you appointment wishing you well, a plan of where to go from here, and much information to be given xx

14



Penelope P said:

Hi Again Everyone!

Thanks Mel, Jane, Kayli & Rissmal for your informative responses. I love how willing everyone is to share here. I, alas have not been the amazing support to others I had planned on being.

Here, life remains a painful blur. Finding sleep hard to get despite the mountain of sedative type drugs and feeling a bit nauseous and so on. A familiar story I am sure!

Yesterday was a milestone day: I managed to have that MRI that I aborted last September. I need not have worried: it was a larger & very well lit machine. I ended up being concerned instead with my nausea (would I make it thru?), and the fact that the head gear - the padding they wedge your noggin in to stop it moving - was pressing on what I believe to be the root of the trigeminal nerve & the back left spot of my head - whatever that bit is -both were causing a fair degree of pain.

It's been a strange 24 hrs since. I phoned in late today to arrange my GP appointment in advance only to be told results are in (well ahead of time) and I can get a same day appt (will wonders ever cease?) so in 2 hrs I will have some kind of results.

While I know it it preferable to have nothing wrong, I have quite a FEAR that the MRI results will be 'normal' & that this condition will remain unexplained. It has happened to me sooooo many times before. I am so worn down by this chronic health nowhere land.

Worse still is the thought that I have enlarged or somehow enlarged the whole rotten thing.

I am not sure how much longer I can exist on this cocktail of prescription meds, unable to cope with any form of stress.

I wish I could simply have a clear scan and some answers.

How is everyone else travelling?

P x
Hi Penelope,
How are you feeling today?
The one thing about TN/AFP is that there seems to be no clear answer or solution. We just have to keep fumbling around to find what works best to eliminate the pain.
I hope you quickly find some answers for yourself.
Rissmal