TN suspected, so confused!!!

Thanks so much for the reply.  I sure hope it isn't TN too.  It is really strange.  It seemed textbook last week but now with this constant ache and some relief from Advil I'm not so sure.  I live in Canada so wait times for specialists can be dreadful.  I am going to look into going through a private clinic & paying for an MRI just to get on with things.  I think it may be money well spent if only for peace of mind.  Does Lyrica dull the pain down???  I'm wondering if the achy feeling is just the Lyrica dulling down the nerve pain??  

I think Lyrica helps as a nerve blocker to where you aren’t feeling the pain as much. I never had a dull achy feeling from it. When my TN was flared up it was stabbing/shocking pain in my face. My MRI’s all came back completely normal. They didn’t know the root of my problem until i had the MVD surgery done. I actually had blood vessels pressing on that trigemial nerve in 2 different places and the neurosurgeon went in and moved the blood vessels and wrapped the nerve in Teflon. I’ve heard of the pain coming back after MVD but I’m hoping mine stays gone. I wouldn’t wish that kind of pain on my worst enemy. I hope you don’t have to wait a long time to see a neurologist! 

I'm going to ask my GP how long the wait for Neurologist will be.  If its months away I will go to a private clinic.  I'm going to lay low till next week and see how things are feeling.  The Lyrica definitely helps but I'm feeling pretty loopy.  Great for lying on the couch watching Netflix, but not if you want to be a productive human being.  That may improve once my body adjusts to it.  Cheers & thanks for reply

What surgeries have you had done?? 

Hi Michael.  thanks for taking the time to reply.  I'm going back to my GP next week to review the medication & how things are going.  I feel really loopy on this Lyrica, only on 100mg, spit into two doses.  My doctor said to increase if my pain wasn't under control.  I'm not functioning very well on it.  May I ask if you have the type of jaw pain and stiffness constantly???  The severe attacks have subsided, Im just left with this dull throb in my jaw with the occasional  jolt that is startling but not excruciating like last week.  Hate not knowing what is going on in my body!!!  I will talk to my GP about Tegretol.  Sorry to hear that you've been enduring this for so many years.

 

Surgery isn't always permanent relief for this pain. The nerves do grow back & it can be worst. 

I am so sorry for your pain! I do understand 100 %. I have spent countless nights & days with the same pain

I have tried many different things including acupuncture only to find temporary relief.

Then a few people on this site suggested taking B 12 & a B complex. If I do get more pain during the day I take 800 mg of Turmeric. (A spice you can buy at any store) I was desperate & tried anything & everything. These take the pain away during the day with out side effects  from pain meds.  At night I take 1/2 a Carbamazapine so I have no pain.

 

Hi Colin. If this is TN I guess I should feel lucky that the emerg doc & my GP both hit on TN right away.  I've read so much about people going many years suffering before finding the cause.  My dentist had a quick look at me agreed it sounded like TN but referred me to a oral specialist in my area that deal with facial pain & nerve disorders.  He is apparently the "expert" on the subject.  I do have a referral to a Nuerologist, that could take month though.  It is so elusive.  Although there are text book descriptions it does seem each person experiences this disease with so many different manifestations.  I'm just waiting and hoping that it may be something else.  however the more I read the more worried I am.  I really should ban myself from Google, but need to find an answer for this keeps me searching.  Currently I have a constant painful ache in the left side of of my face & my teeth.  Interestingly I am able to sleep through the night, but as soon as I wake up, there it is.  I've had a severe tooth issue in the past,  It feels similar but different (if that makes sense) and there was no sleeping with that pain.  Its a waiting game for now.   I so appreciate your reply, it is comforting.  

HI Vicki.   Thanks for taking the time to reply.  So much support here, it is so good to speak to people who understand this.  I have read many folks talking about B complex, it sure can't hurt to try.  I have a friend who recommends Tumeric for just about any ailment you can think of.  I'm sorry you are dealing with this too.  It's just so unbelievable that 8 days ago life was just normal and then boom this happens.  I've been so confused and in shock all week.  It really turns your life upside-down.  For me, since there is no definitive diagnosis as of yet I will hold out hope that it is a one off thing that may resolve itself.  God Bless!!!

I had this surgery you’re referring to and it was a Godsend. Will it last forever? I have no idea. But I have been pain free for 7 months and it’s been amazing. I’m also off all the medication and have been for about 5 months. I did a lot of research before I did this surgery and MVD is the most successful with TN. But when you’re suffering with this kind of pain for years on end and maxed out on all medication, there’s not much you wouldn’t do. I was desperate but I’m so glad I did it. I’m 24 and he wasn’t thrilled to operate on someone that young but I’m forever grateful he did. There are a lot of complications that can go wrong as far as hearing loss and double vision. I experienced muffled hearing for about a month but that was the only side effect I experienced. I hope you go with whatever you feel is necessary. Good luck!

I live in SC so I had my surgery done at Greenville Memorial by Dr. Kanos. He has done well over 200 of these surgeries with an 80% success rate. I wasn’t about to let someone operate on me that hasn’t ever done this surgery! Lol. I’m not 100% what the cost was before  insurance. I want to say around $40,000 or so. But I have insurance so I paid basically nothing for it. The medications are great when they work. But when you’re on so much medicine and it’s not working and it makes you feel like total crap, it’s just not worth it. My body eventually got used to the medicine and there was nothing else they could do except for surgery.

Hi hsisk,  I have a question about meds for you.  It sounds like you’ve tried many before surgery.  I’m starting to have relief with the Lyrica, just mild ache now and a few twinges.  It gets worse as I’m getting close to my evening dose, but settles once I take it.  The question is about Lamotrigine.  I have been on Lamotrigine 200mg for a few years for a mood disorder.  It has worked wonders for me in that area.  Why would I get an episode of TN if I’m already taking Lamotrigine. I’ve read many find success using for TN.  Not sure if you might have some insight but if you do I’d love to hear your thoughts.  Glad to hear the surgery is helping you. Sounds like you’ve had quite a journey with this affliction .  Cheers Javaj

Lyrica did wonders for me as well. When I was first diagnosed I tried Lamotrigine and it didn’t help me at all unfortunately. I’ve tried Tegretol, Lyrica, Baclofen, Gabapentin, Amitriptlyine, and Lamotrigine. The combo of meds that I had the most success with was Tegretol and Lyrica. I was on Tegretol for the entire 6 years I had TN. I’ve taken so many medications I’m not 100% sure that’s all the ones I’ve tried but those are the ones I remember. I’m very glad the Lamotrigine seems to be working for you though! That’s awesome. Honestly it depends on the person. You just have to find what works best for you. It took me years to learn the perfect combo. Have you had any recent trauma to that side of your face? Sometimes that can trigger something. 

Hi again.  My question wasn't very clear I think.  This is my first attack of TN, it is just awful.  I have been taking Lamotrigine for 2 year for another issue (mood disorder).  I wondering how I could have such a bad attack while already taking 200mg a day of Lamotrigine.  Anyhow,  Doc put me on Lyrica last week and it is starting to kick in now and I'm feeling some relief.  Just curious about your ideas on the matter.  I did have a front tooth crown replaced little over a month ago.  There was some sensitivity after it was done, my dentist did an adjustment and it settled down.  No problems in that tooth since.  

That would be a good question to ask your neurologist because I honestly don’t know. I do see why you’re curious about that though. How is your pain today? Is it still more achy or stabbing feeling? I always described mine as if I could imagine a really hot knife stabbing me in my face this is what it would feel like. I had a crown about a month ago as well. I don’t think that would have triggered anything but again I’m not sure. My pain was completely out of nowhere when it started. I was 18 years old when my pain started and TN at that age is unheard of. I was the youngest patient my neurologist had ever treated for TN. I actually ended up diagnosing myself lol. Also, 200 mg isn’t that huge of a dose. Maybe it had been keeping this disorder at bay but now your body is used to that pariticular medication. Every time that would happen the doctor would have to play around with my dosage. This disease is so awful because a lot of people don’t know a ton about it because it isn’t very common. It’s extremely frustrating for those of us that suffer/have suffered with this pain.

I have so many questions to ask when I do get into a neurologist.  My pain today is really not bad.  A few twinges in my jaw, teeth area.  Your description of a hot knife stabbing me in the face is exactly what I used to describe it to the ER Doc last week.  I think the Lyrica is doing its job, perhaps in combo with the Lamotrigine it is working more quickly????  Even doctors & the drug makers don't know how these medications really work.  I'm not sure this was totally out of the blue now.  Certainly the full face, teeth jaw stabbing knife pain is new.  Over the last couple of years every so often I would have a day or two of stabbing ice pick pain in my ear, really deep inside.  Once I had to call in sick to work cause the pains would come so often.  They were very quick, just a few seconds then gone, just many times a day.  I always put it down to my earplugs, I figured my eardrums were bothered from too much suction from the earplugs.  The pain would make me hit the roof though.  Related, who knows????  I know what you mean about people not understanding....I had a friend at work who thought maybe my earring was pinching me a night when I sleep and another suggest it could be a new face cream I've been using.  All well meaning suggestions but not helpful.  I can't imagine you being faced with this at such a young age, it must be very scary.  I pray that your surgery keeps you well for ever!!!!  Did you have the stabbing pain with no pain in between?  I seemed to be having the stabbing pain that would just radiate through the side of my head but them just leave me with throbbing achy pain in between.  Difficult to open my mouth to eat or talk.  Today was the first day I was able to eat normally.  I really appreciate getting you taking the time to answer my questions & let me know about your story.  It is so helpful to connect with people who understand this.  

My pain started after I had some dental work done. I asked the Dr. & he said "There is no proof that it caused it . But most people that have this have had some kind of trauma to the mouth or teeth."

It's more common then you think. 

For relief this is what I do

There are a few things you can use to have less side effects. 

1. 800mg of Turmeric in the am. For some reason it doesn't work that well at night.

2.  B 12 & a B complex. This needs to be taken in the am. (B vitamins keep you awake)

At night I take 1/2 a Carbamazapine. 

I hate the side effects of the meds. 

Both the Turmeric & b vitamins are natural & don't have side effects.

I agree that it’s more common than we realize but there is still less than 200,000 cases a year. And for my age it was extremely rare for me to have this because I was a teenager when I was diagnosed which is why they never even considered TN. I’m the one who asked about it. Normally it affects women over 50 and I was 18! I never had trauma to my face and I was never in a bad wreck or anything. Mine literally came out of the blue. 2 blood vessels were wedges on on my Trigeminal nerve causing the stabs of pain through my face. The neurosurgeon said I had one of the worst cases he’s ever seen and my surgery ended up taking 2 hours longer than he anticipated. I’ve heard good things about B complex for this disease. I was so desperate and so over taking medications that only half worked I opted for the MVD surgery. Best decision I ever made. Thanks for your reply!

Whenever you think of a question write it down! That’s exactly what I did. I’m so glad your pain seems to be easing. It sounds like the Lyrica is definitely helping. The medications used for TN are wonderful when they actually work correctly. I’ve heard of people describing this kind of pain in their ears before. Maybe it’s started there with you and now it’s moved to your face/jaw? I had some pain in my ear after my surgery but that went away and hasn’t come back. I always felt bad because my family would try their best at being supportive but they didn’t understand what I was going through. Which is why I came to this site. This support page has gotten me through some of the darkest times in my life. It’s something about connecting with people that know exactly what you’re going through.  I would go several months with no pain and I would slowly get twinges so I knew that’s when it was coming back. Within a week of those twinges it would be full blown for the next few months. I think the longest I ever went with no pain while on medication was about 6 months. Then it started coming more frequently and the attacks were more severe. If i just laid there I normally wouldn’t have pain but if I moved my mouth or wind touched my face, etc it sent immediate shocks throughout my face. Normally mine was always triggered my something. When I was first diagnosed though it was very sporadic and it would wake me up in the middle of the night. That stopped once I was on a high dose of Tegretol.  I truly hope you get to the root of your problem and find some relief. I’ll answer any questions I possibly can!

Hi again.  I’m guessing the low dose 50mg x 2 isn’t doing it anymore.  I started feeling a bit stronger pain last night.  Dull in comparison to last week but keeping me awake.  I’ve been doing a lot the last couple of days, catching up from the fog I was in last week.  I’m going to up my dose to 75mg x 2 and see if that settles things down.  My GP suggested I go up slowly until I maintain relief.  I imagine this is normal.  Body adjusted to the meds and now I need more for effectiveness.  Good news is I have a neurologist appt in May.  A ways away but I’m in Canada and referrals can take up to a year or more for specialists.  I think doctors do their best to triage patients, so 2 months is good.  I was going to pay out of pocket and go private if it was a really long wait so this is good.  Mean time my GP is very good about most things so I trust her with meds for pain.  Hope you’re having a good week.  I’ll check in and let you know how my facial pain specialist goes next.  This guy is an oral surgeon and specializes in nerve pain.  Got in quick cause my dentist referred me and extended health covers it cause it’s dental and not government medical system.  Canada has its flaws with medical system for sure.   Thanks for listening!!!!  Not much to do at 4:00 am.

Just curious what you're taking for pain. Just try the 800 mg of Turmeric in the am. Like I said it's a spice, not adictive & actually good for you. Didn't work at night for me. 

I had to stay away from sugar & anything with acid, ketchup, tomato's.  Have a blessed & pain free day!