What a surprise out of left field

General General TN & GPN (Old Site)
1

I got dx about 18 months ago with TN. Turns out it is TN1 and TN2. I have been going to a Neurologist and taking 1400 mg of Gabpentin daily more as needed. After only 3 visits I tell my Neuro about my symptoms increasing my tongue is numb. I ask for a referral to Neurosurgeon. I want to learn more about the MVD, Gamma Knife, etc options I have seen discussed on this site. During my visit with the Neuro, I get a surprise completely unexpected. I have GPN too. OMG! This diagnosis stuff never gets any easier. I have been thinking it was my thyroid (hypo dx 10 yrs ago) Choking when talking, hard time swallowing, etc. I was bumming hard but what else am I going to do but accept it. The only treatment is brain surgery. Terrified! The bottom line is they will increase my Gaba until no longer tolerable (around 3000) and then surgery. I am 52 years old and I want to live, laugh and enjoy my life. I can hardly function on 1800-2000. So here are my questions,

  • Are you able to work?
  • When did you know when to stop working?
  • Does this disease qualify for permanent disability?
  • Will working make this progress and get worse?
  • What do you do to stay in a positive space?

I am at a cross roads about what to do and sure appreciate your feedback.

2

Hi Justpeachy,
First and foremost I’ve never heard of two TN journeys that are alike, we share similarities so keep that in mind, we’re all unique…
As to your questions;

  1. I’m 41 and had to stop working at 39 yrs old.
    I was diagnosed at 29 with bilateral TN, on meds for 9 mths, then went into long remission. 8 years on right side, 10 yrs on left.

  2. Vertigo caused me to take short term off of work, lengthy search as to cause …( Tegretol was best guess) vertigo decreased left side came out of remission and became resistant to meds, which caused my short term to turn into long term.

  3. Yes, it does qualify but can be lengthy process.

  4. Not that I’m aware of…

  5. This is a difficult question to answer…as my personal situation has worsened it has become increasingly difficult, and coping strategies change with the wind…but having even just an ounce of hope has kept me somewhat sane.
    I have used/use meditation, journaling, positive thinking, gratitude journals, prayer, this site for support, open communication with others, continuous research, empowering myself with knowledge to make informed decisions.

One moment/day at a time and read as much as you can …
(( hugs)) Mimi xx

3

Hi Justpeachy

I have TN2 and also GPN. I also was diagnosed with TN first. It took until I had an MVD in the fall, having both fifth and seventh nerve decompressed, for there to be total diagnostic agreement about the GPN, with the neurosurgeon taking a peek into the lower cranial nerves to get visual proof that there is an artery snaking around the roots at the brainstem. He is sorry he didn’t cut it when he went in there. It can’t be decompressed, it will have to be sectioned. So I am looking at another surgery. I also have also been officially diagnosed with occipital neuralgia.

  1. I’m an artist and a writer so I work from home but my production has dropped and I find it almost impossible to promote myself.
    I will be 60 in less than two weeks. My first attacks came when I was 55. I was diagnosed with ear/ sinus infection. Oddly, having three cranial nerves compressed only muddied the diagnostic waters. I was bounced around a lot. My “job” more and more came to be about keeping track of what was happening and learning about cranial nerve disease.

  2. I am lucky to be able to keep doing what I love to do, even in a limited way. I use it to ride out the worst of the pain.

  3. I was denied disability a couple of years ago mostly because the severity of the problem wasn’t known. I am in the process of applying again.

  4. there are many things that I love to do that make this pain worse and so I have had to limit my activities greatly

  5. staying in a positive space is harder some days than others, and some days almost, well, it’s subpar to say the least. I have learned the most about how to handle this misery by reading and practicing Buddhist teachings. I also keep in touch with my friends and go out when I can, even when it is killer. I really work at keeping myself looking normal even when a tidal wave of pain is riding through me. Unfortunately my hemifacial spasms have returned and so there is nothing I can do about that because sometimes they erupt before I can hold them down (they start in my upper lip and in my nares). Talking is one of my worst triggers and after socializing I may have to stay silent for a couple of days or longer.
    I take great comfort in the physical beauty of the world, music, literature and especially my love for my two daughters and my 10 month old grandson - they give me the will to remain as vital as I can.
    I also love to watch The Voice and American Idol!
    I also find that if I keep moving - a along as I keep my head up - it helps.

I take 3,600 mg gabapentin, 75 mg Tramadol at about 12:30 pm to keep me sailing through the rest of the day, and have recently added a bit of baclofen and need to take zoplicone every night. I also have zanax on hand in case I am out and about and hemifacial spasms strike. I really struggled with so much medication for quite some time but I have sort of adjusted to it. I am slow and am easily distracted and forgetful, but this winter I took on the job of editing a friend’s theological PhD dissertation and found that I can still think as long as I am not disturbed. I was actually able to be very helpful for her right up until the moment she defended last week, and best of all she got through with flying colours and I am still elated!

Even though I am still on high meds the MVD was totally worth it. It has been most successful in the matter of being able to chew food with relative comfort. I have gained back 12 of the 22 pounds I lost and am not freezing all the time. I can also take a fair amount of breeze on my face but cold temperatures are still triggering. My gums are not so hair trigger as well, either that or I have learned how to make my tongue behave around the hot spots.
Vibration is still deadly and so being in the car, travel in general actually, is brutal.
Talking too.

I need to sell my house where I live on a small island and move to the city, but when I get settled, I will go for the second surgery and have the ninth nerve sectioned. It is my best chance to reduce my meds.

So, I hope this big long narrative is useful to you in some way. And my best advice is to keep as active as possible, rest when you need to, stop work if you have to (without guilt), don’t be afraid of the meds, and get the surgery as soon as you can.

I wish you the very best. Keep us posted.

Keep Heart
Bellalarke

4

HI!

I had to stop working at my first Master's job - tried 3 meds - helped with pain - but took away my IQ

I started then researching MVD -

I read that 90% + TN1 are out of pain, lowered pain, no meds, or less meds

I read that 65% with ATN have lowered pain, no meds, or less meds

Google - The Tides of Neuropathic Pain==== if you can't watch it all in one sitting, break it down

First hour is Dr. Casey explains TN/ATN and the different options like he does in the book - but its updated from the book

This was my guru - he wrote the book "Striking Back" by Dr. Ken Casey (our bible here)

I watched the video, sent him my records with a personal email and he emailed me back.

6 weeks later I flew to Michigan. For MVD = Cranial surgery, not brain surgery

It has been 2+ years, now no meds, no pain.


I accidentally found my dream job..... but it was hard to find my self esteem, and confidence. Had PTSD and depression before, during and after MVD

You can get disability - there is a place in the pain info tab for disability.

What I did to stay positive was to find positive MVD surgery stories --- they are VERY hard to find. 90% who have had success with MVD - are not here anymore - they are out living their lives.

I stayed behind to give hope to others.... in another 5 years, I may need another MVD, stay 2 nights in a hospital, and start over... but now I have to feel in my heart that I won't have to have another one for 10 years, or ever!

Do you have a desk job? A job where you throw your head and neck around often?

HAVE you ever asked for Lidociane patches for your face

even your GP can get that for you....make a phone call - has helped many - no appt. needed.

Keep learning, asking, posting, repeat!!!

My number one question to you now would be HOW many / HOW often has your surgeon done successful MVDs?

Best MVD window is in the first three years of onset

5

Just peachy, it IS different for everyone. Some people are able to work even with significant symptoms, I love what I do and still work but I have a hard time doing so. Some people slowly improve, others have worsening symptoms. Meds work long term for a bunch of people but not for others. MVD is the answer for many but other procedures, according to MY OWN research, make TN and ATN worse. Don’t give up, remember YOU are the expert on your TN, get other opinions if something doesn’t ring true to you. I also believe you should try to do what makes you happy. Take it a day at a time and if that day is too overwhelming make it a morning at a time or an afternoon at a time, etc. We also don’t usually make one big life-changing decision all at once, it is more like a long series of small decisions as we go along. Take care and remember there are people here who understand and care.

6

Thank you for your responses. It is really helpful to know your story and hear your journey. I like the take it moment by moment advice - it seems so obvious but I can sometimes get focused on my future and forget to enjoy the moments without pain.

Praying today is pain free day or moment for you all.