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Living With Facial Pain

How do you cope with the pain of TN1? Young and depressed/scared to death


#21

Hi Cheyane93 -

This is a difficult disease to cope with. Everyone reacts differently to the meds and what works like a miracle for one does nothing for another. It’s pretty much trial and error until you find what works best for you. It’s the same with trying to deal with looking ahead…everyone seems to find their own way to cope. This is a great forum to find help & suggestions and to just vent. I would also strongly advise reading the book “Striking Back”, in addition to doing as much medical research as you can to educate yourself (and your fiancé) about TN. Hang in there and know that you are not alone in this nightmare called TN. There is also a FaceBook page that is very useful. It’s a closed group that you ask to join. fpa official trigeminal neuralgia network


#22

Cheyane93

I got my first copy of Striking Back when I contacted the TNA office.They sent me a copy at no cost.
The number for them is 800 923 3608

You do need to get a Neurologist who understands Trigeminal Neuralgia and
talk about the different procedures there are for our problem. I had good results
with what is called a Percutaneous Stereotactic Rhizotomy or just PSR for short.
Pray that you find help from someone who understands what TN is. Not even some doctors understand what you have


#23

There is no medicine for TN, the only permanent solution is MVD surgery and all other options are temporary and worthless.


#24

That is a fairly ridiculous, hopeless and somewhat dangerous thing to say. Obviously many TN sufferers have used medications only and done quite well. The original poster herself has gone into remission twice, both times facilitated by medication. Remission must represent some kind of healing process, as it persists even when medication is stopped. I myself am doing much better with topical medications, and feel that healing is definitely possible (though I have ATN, not TN). The key seems to be to get the nerve to “calm down” somehow.

Neurosurgery is a quite drastic and risky procedure, and IMO should only be pursued when all medication options have been exhausted. One only needs to read some of the stories on here for a while to see the hair-raising results that can happen, even with the best of surgeons and most obvious compression situations.


#25

I just want to thank all of you guys from the bottom of my heart. I am so glad I found this community. You all are so full of hope and love and it really is an inspiration to me. :heart:


#26

This may be ridiculous, hopeless and somewhat dangerous thing for you but its 100% true and no body can deny this. We can not spend all of our life and money to fight from TN with different treatment options, so MVD is last option, and by the way i know the riskness of neuro surgery as my mother gone through this MVD after suffering from left side facial pain since 30 years and now se has only left side facial numbeness which is better than pain.
Regardssanjeev kumar saraogi


#27

Hi Cheyane,
I’ve read your post and all the replies. I am glad you found this site. Knowing you are not alone and there is a place you can reach into is a tremendous help. You will find meds that will be right for you to quiet that TN. You may have to be on them at a low maintenance dose forever to stay in remission. The emotional roller coaster is tough. I pray you find the serenity needed for every day coping. Meditation helps me, as does cannibus. My latest flair up happened when opening the oven door to take out dinner. That blast of hot air on my face sent me into the worst attack yet…so be careful there! These folks and their advice are such a Godsend. Hang in there!


#28

That’s not 100% true even by the most generous study out there. “excellent results” for Type 1 were less than 25%, “good results” 39%, and “poor results” 36%. Average pain relief had a mean of 2.5 years. FWIW p< .05 making it a vry reliable study (published in Journal of Neuro Surgery April 2015) Type 2 and ATN was not considered as MVD is totally worthless in the absence of lancinating symptoms and actually considered to make them worse.

Complication rates are high enough that both the International Radio Surgery Association, American Academy of Neurology and the European Federation of Neurological Societies have withdrawn their Practice Parameters for further review and updating.

That is not to say MVD is not a viable option for some, only that the procedure is not used nearly as often and in far fewer circumstances. The major medical centers/schools tending now towards less invasive radio surgery. (Cyber Knife etc.) The Private clinics are tending towards the high dollar invasive surgeries.

From my viewpoint, that is a good thing. The anecdotal evidence was always there that elective brain surgery is not generally a good option. It has finally been determined that TN caused by nerve compression from blood vessels is very rare and that most cases have a different cause more frequently injury OR damage to the trigeminal nerve’s myelin sheath from disease. Neither of which is surgical. In fact the diagnoses of Trigeminal Neuralgia is being replaced with other terms even on the axis codes. Its a description of pain not a clear diagnoses.

TJ


#29

Hi Cheyanne,
I am sorry you are in the depths of fear and darkness but you will have better days. Remissions are fabulous but I have not had one in 4 years of having this. Many of us hope to get the right Ned’s to manage pain at 2-3. Once you see a better neurologist you can try adding another drug. Changing completely to just one or others. Scott is so right. You can be tired. Do not think of your whole life of pain but work on the present and shorter time like this month. I actually have much less pain in the summer when the cold wind is gone but Zi still have it some.

We are here for you and each other. There are -2-15 drug options, technical options and tools you use like sleep, meditation, head covers and turning to a higher power. Build a bigger help network at home. Beyond your fiancé. Some people actually move to other cities and weather. You are strong and as a young women healthy. Your body will start to help you with this too.


#30

Cheyanne: Hang in and be hopeful. I’ve had TN for years. Some years have been horrible and next to unlivable. But this past year or two has been great–hardly any type 1 pain at all, and I’ve been able to reduce my meds. We don’t know what’s in store for us on any given day or TN interval. You will have relief at some point. Know that we pray for you.


#31

Hi Cheyane, I am so sorry to hear you have this terrible disease. Personally I am on anti-depressants to help with the feelings of dread. I hated most of the ones I was originally prescribed even though they helped because they made me even more sleepy. I am on Prozac now and it gives me a bit of energy and the depression is gone most all of the time. Hugs to you dear. Stay strong.


#32

Hi Cheyane…
We all Go through a rough patch, I was taking 12 Gabapentin plus depression pills a day until I found a doctor who would help,long story short [ about 2 years ] found a neurosurgeon and had operation ,turned out good been 2 years this march ,they say good things take time , we all know the pain you going through, hang in there we all thinking of you mervyn


#33

:slight_smile:


#34

Hi Cheyanne,

I was off work for about a year with TN pain ~ people do not understand because to them you look normal ~ they don’t see the amount of pain we go through. It was the worst pain of
my life ~ I lost over 40 lbs. ~ thought all my teeth were going to fall out and that I would
go blind because of the shooting pains on the side of face up to my eyes.

I was able to get to the root cause of all my pain. I had pesticides and heavy metal toxicity.
I had the heavy metals building up in my system for years ~ but I never knew it. The
pesticides (I was doing a Vegan diet for about a month - a ton of raw veggies, but not organic) Those pesticides tipped the scale in my body ~ completely overloaded me with toxins.

It affected my whole nervous system. Long story short, what caused the heavy metals in my body was breast implants that I had for 30 years. Once we researched breast implant illness and I got them explanted, I was able to detox with two fantastic Nutrition response doctors. This protocol helped me detox and become pain free.
The heavy metals and pesticides attached to the nerve endings and was the cause of all my mouth and facial pain.

Sending lots of healing prayers your way ~ I would not have made it through my healing journey without spiritual support and lots of prayers.

Karen


#35

Hi Cheyane93,

I don’t know when you got diagnosed but I know you are going through a mourning process right now. You will need to learn how to live in the present. Yes, it’s tough. As a mother of four kids and as a relatively young person who has been living with type 1 and type 2 TN, as well as geniculate and glossopharyngeal neuralgia, I totally get that. The road to acceptance is paved with anger and frustration. It was the same for me. I was lucky enough to undergo MVD, which removed the type 1 TN pain, but I’m still stuck with the constant other pain. Did you ask your neurologist for a fiesta MRI? Did you have compressions? Is it possible for you to undergo MVD? Medications are not the only possible form of treatment. Of course, surgery is expensive, but you could set up an online fundraiser or ask your family or friends to help out financially, which is what I did… It’s just an idea. I don’t know anything about your situation apart from your brief description here. Is there a pain clinic in your area you can go to? Sometimes you can get referred for cognitive behaviour therapy or free consultations with a pain psychologist. Please do ask your GP or neurologist about this. I went to the pain clinic for a year and found some of the stuff quite helpful. Watch out for psychiatrists though and do not get tempted to start taking antidepressants. I did and they seriously messed up my life. SNRIs are also a pure nightmare to get off. I am happy to hear you have people in your life who love and support you. These people are worth their weight in gold. Try and treat them well, as they suffer from your condition too, you know. Talk to them and encourage them to talk to you. What if you have to be on medicine forever, as long as it works? In my case, the meds didn’t work and I had to undergo brain surgery. Now I still have constant pain and I need to undergo SPG blocks for it. If the meds work, you are really blessed, you know. No, you are not normal, you are special: you are a TN warrior, just like me, just like all of us on this forum. You are not alone. Remember that. There are a lot of people all around the world suffering from exactly the same thing. They all miss their old self and they all wish things were different. I have been wishing for this horrible pain to go away since I was 10 years old - yep, that’s when it first started - and I am 42 years old now and it’s still there. But I have not allowed this beast to define me as a person: I got married, I have four great kids, I am working full-time (from home!) and I have nearly finished my PhD! You can do this. I know you can. Don’t get trapped in a downward spiral. Just try and live in the present. One day at a time. Big hug x


#36

Have you looked into seeing an Upper Cervical Chiropractor? It was the answer for me. I tried the medications often mentioned on this site and they did not work. If you are interested in more information about this let me know and I can point you in the right direction. I am 99% pain free and have been for months. This may be the solution for you, it has been for many. Wish you all the best.
Bruce.


#37

Cheyane, keep your head up and stay strong. I recently had 4 unsuccessful MVDs in less than 3 years. I have a complicated case and now I am a case study for the Brain Institute. This is a tough disease for us and everyone who loves us. Acceptance is hard, but once you can accept this awful disease, you will have a better attitude. I had to resign as a partner in a big law firm and that was hard and now on LTD. I wish you the best, and you can always PM if you need to. I am here to help you and everyone else. All my best, Reed


#38

Start with finding your creative side take the fiance with you explore some places you’ve never been find some items to make dream catchers when she things that I’ll bring it into your ear on your sad days. me myself I belong to an anger management group and we break a lot of s***. I’m not condoning breaking anything I’m not condoning you stopping your life from being you you should go out and find something that makes you feel amazing


#39

No, I haven’t noticed a relation between my MS and the TN. The TN is caused by my MS - the pain kept me fatigued and the meds I was on (Trileptal) made me feel dopey and forgetful. Now that I’ve done the gamma knife and gone off of the Trileptal, I feel freaking great! I used to get incredible residual pain, even after the gamma knife, that the meds couldn’t touch. It’d put me on the couch, out of commission.
Talked to my neuro about it. I brought her pix I took of my face on the days the pain was unbearable and circled the areas that hurt / burned. She thought it was my sinuses. So she had me try Zyrtec & Flonase every day. Holy cow, it’s working. I’m finally off of the Trileptal, experiencing little pain, and Have a whole new lease on life. It’s weird.
I also did Two rounds of Lemtrada for my MS. that may have helped as well m, with lessening my fatigue and weakness. The facial pain just drained me.


#40

Angie, what kind of nerve block did you have and how long did it help you? Thank you for your good advice.