6 year anniversary and feeling low

Hello all,

Yesterday was my 6 year anniversary of my Constant ATN/idiopathic facial pain. In a lot of ways I feel more lost and hopeless than I did shortly after diagnosis.

Back when I finally got diagnosed and was trying medications I had a lot of hope, I was struggling with trauma and acceptance, but I believed strongly that things would improve. And they did. I found medications that helped lower pain levels, mainly Nortriptyline. I met and married my husband just before my 2 year pain-iversary. I felt like I was rebuilding a new adjusted life. I was excitedly jumping into part time jobs with hope that this would be a good fit, and I could do it.

Now, at 6 years of face pain, my medications are beginning to be less effective, and are possibly having a negative effect on my heart. I have tried 11 medications, most of which did not work or had intolerable effects, I tried nerve blocks, cannabis products, Kratom and I was talked into trying Gamma Knife next month even though I have been heavily resistant to trying any destructive procedures. I have no other options left.

I have had 8 part time jobs in 5.5 years. And none of them have met our financial needs and been sustainable with my constant pain. I’ve had to swallow my pride and quit every job because of poor health. Now I fear starting the next one. I feel like a lier in interviews, saying I plan to work for at least 2 years when I know my body will only hold out for about 6-8 months. If I were healthy I would work for the full 2 years, but I am not.

My pain is spreading over time, as my treatments become less effective the pains grow in size and variety. I now have more stabbing, more sensitivity, and I got the first electric type zaps this year. It makes me wonder if I need to add type 1 pain to my list of the horrible raw burned flesh, ice cream teeth, and bone crushing pains I started with.

So basically as my treatment options stretch thin, and my hope for a brighter future gets foggy and confused my pain is getting worse.

I don’t know where to go from here. I hope the Gamma knife does some good, but I have 50/50 odds at best. So I can’t bear to rely on that.

I’m 30, butI can’t imagine what 35 will look like without having a literal panic attack. It’s not fair, I know it’s not for anyone, but I’m still mad about it.

I probably seem small and pathetic to you 20+ fighters out there, but right now the last 6 years feel simultaneously like an eternity and like I blinked and it rushed by. I’m trying to figure out how to live in the moment, b it that is so hard when this moment is agony and the future hangs looming with likely worse things.

Thanks for being a place where I can reach out and let my feelings go into the internet void.

1 Like

I feel you. I am in year 6 myself with nothing working and no real path forward. It is nice to know I am not alone.

Thanks for the reply. It is always nice to not feel alone. Some how I thought this would continue to get easier to live with, but the last couple of years I feel like I have back slid emotionally. I’m so lost with where to go with treatment and how to keep up hope.

Have you tried narcotics at all?
They give me a break.Just codeine.
Also clonazepam.
I am at 5 years.
if you are getting the zaps you are probably getting type 1.
I don’t know.
Have you tried a ketamine infusion?I have not but I am hoping that someone will offer me that.
I went for a gamma knife appointment but they sort of said not appropriate.Maybe because you are getting the zapping.
No one wants to deal with us.We don’t fit a category.
A chiropractor in Toronto co-wrote a paper on neuropathic face pain.The fists session knocked my pain down a third(by the drugs) but after that it did not work.
I could give you a link if you want.
All I know-if I was not on tyenol 3’s for back pain they never would have given me any for my face pain.
I don’t know.You are so young.I am old.Just waiting for the the end.But I find being by the water with the waves helps my pain.And I collect beach glass and fossils.
But I could not imagine working.
You are lucky-you have a partner.
And have you have used the over the counter patches and you have been prescribed topical?
I wish I could do something to cheer you up.

Hello Ellen,

I have Vicodin that I use during my frequent kidney and gall stones. It doesn’t really do much for the nerve pain it more just takes the edge off and makes me relaxed and not care as much about it. Cannabis products do the same thing, they don’t really stop any pain, just make me less upset about the pain exhisting. Which is nice, but not very sustainable.

Ketamine is on the short list of things I have not tried yet, my doctors have been resistant to trying that, but if my Nortriptyline is actually being as bad for my heart as it might be, and the gamma knife isn’t very effective, then that could be something I try early next year. I actually have a heart monitor taped to my chest right now. My heart rate has not been below 89bpm even when I am asleep for 3 years, and it is almost always about 110 when sitting. Long term that could cause heart wall hardening which leads to all sorts of bad things. So I hope this heart monitor tells the doctors what they need to know to help me make good choices. It’s rough at 30 years old to try and plan for the next 30 years with a body like mine.

I did a lot of chiropractor work in my first year. It helped with the neck and shoulder pain I get from referred tension but didn’t effect my face at all.
Now I know that my pain is most likely from damage done during an oral surgery where they drilled into my jaws and scraped out my impacted wisdom teeth. So unless a treatment can have an effect on the broken nerves in my jaw it doesn’t work.

Collecting things on the beach sounds lovely. I react really badly to wind, so I miss having peaceful days at the beach. I still go in the summer with my face wrapped in a winter scarf and sweat like crazy. This summer was a bit better since I wore my home made face masks to the beach and that kept most the wind off my pain areas.

I have been finding some joy in sewing projects, I made myself a 1890’s style corset, the hardest project I have ever attempted, and lots of fun skirts and blouses. A friend just gave me a massive box of beautiful old curtains and table cloths for free and I have plans for some 1940’s style clothing.

I just wish money was not such a concern. If I could just sit home and sew when I wanted, clean my house, and rest when I needed it would be fine. But even with my husband working we can’t pay my $10,000-$15,000 a year medical bills and cost of living on his income alone. And he keeps getting laid off through no fault of his own. We’ve been married 4 years and he has been unemployed for almost half of that time. He gets a contract job and they don’t renew the contract, and then the company he worked 6 months for has a merger and he is laid off. Then he had a good seemingly solid job, finally! and then COVID, and because he was the new hire he was the first let go. Keeping medical insurance has been a nightmare. It is just all a lot to deal with. Life is so hard, but I am stubborn and in love so I stick around.

Oh, and I use OTC Aspercream patches. I tried talking to my neuro about prescription patches and she said she didn’t know how to get them, and since the OTC ones work well enough I have not pushed the issue.

I am so sorry to hear about your work and your struggles with pain. Six years IS a big deal …it’s a long time . Maybe you will not have to become one of us with Twenty years experience .Maybe Science will have an answer before then
There is always that hope .
There are rarely any easy answers but I have found, personally , that having people pray for me brings Breakthroughs. Not sure if I can bring up religion here but there is a large inter denominational group called Breakthrough that will pray for any prayer request for Twenty One days .Four people pray . I think a person could even be Wiccan and they would pray for them . It’s listed as Intercessors.org on line as someone had already taken the group’s name of Breakthrough

Regarding pain relief , I have tried every Seizure Med out there and could not tolerate any of them . Without opiates I would be in trouble .
Not all opiates work equally or can be tolerated. It helps to find knowledgeable people…Facial Pain is not a Tylenol Three, in general, type of pain.
I understand your hesitance over the procedure.
I wish someone at a Pain Clinic would offer you other options. Often docs jump to that as it pays more than seeing someone just for Meds. Sad but true .

As I developed pain in different areas I found new ways to treat that area’s pain . Lidocaine in various forms helps a great deal . A Friend with the electric shocks uses Valium for the electrical sensation — have you tried that ? Not everyone with prescribe it along with opiates but sometimes it’s necc.

Along the way I learned that not every Anesthesiologist is as good as the next in doing Injections . After ten years of quarterly Facial injections not even the Good Anesthesiologist always hit the mark …
Having a good Compounding Pharmacy also helps …call around and check prices . Sometimes it’s a huge difference .

And the base they use can make a difference in efficacy …at least in Five per cent Lidocaine cream . RECTICARE Is an OTC Five per cent Lidocaine cream meant for hemorrhoids. It works well rectally but is not as effective on the face …but cheaper than the Compounded version FOR the Face . Rectal mucosa would absorb a cream easier than the epidermis on your face …but it’s worth a try if you are interested
I have tried Ketamine as a compounded spray and oral cream…not greatly impressed but everyone is different. All these meds are pricey .
A saving grace for me was buying a Personal Disability policy when I was young . If you ever have the chance and the Means jump on it!

Regarding your heart …first of all, avoid Mt. Dew. It’s has a chemical in it banned all over the World except in the US that is a heart irritant.
Have you been tested for POTS ? You have been on meds that can cause Tachycarida but perhaps by now you have developed POTS also. If you have to be on a Tri Cyclic Med for pain try to avoid things like caffeine , even Decaf tea has caffeine.They are an added irritant
I sympathize greatly .
Opiates can cause Sleep Apnea which can affect the heart , Tri- Cyclics , POTS …you are being very smart to try and protect your heart now but sometimes you do what you have to do to treat the pain.

I took Elmiron for years for intolerable bladder pain. . The Interstitial Cystitis inexplicably got better but, now I hear I think the Elmiron may be the source of some eye issues. Would I have done anything different if I knew that years ago ? I doubt it. Pain is demanding …but here is a case where it got better and was not a Life sentence

There is always Hope .

Sorry, I am getting tired now .If I think of anything else I will come back and write more

By Tylenol 3 I also include Vicodin as inadequate for the type of Facial Pain we are discussing here
For my level of pain it takes Exalgo, Fentanyl or Oxycontin ER.
Vicodin would be just an add -on for worsening pain---- an addition to the extended release opiates just mentioned
Personally, Fentanyl was a walking Hell .I could not tolerate it
By the way ----one pain Med option offered to me was Intra-thecal opiates . At that time it had serious complications including not being able to get MRIs anymore . IF you were in such dire straits that you needed it I would strongly rec trying to find someone with EXTENSIVE experience doing it. Perhaps the MRI issue is no longer true but not being able to get MRIs was a deal breaker at the time .
I found another Pain Specialist who came up with a better option that worked for me after several other Pain docs could not . The Moral to that story is to not give up. Even very smart Pain Specialists can be limited by their experience / knowledge base .
My religious beliefs helped me when I was in that hard time —multiple specialists without an answer that worked . And prayer . Other people caring enough to pray for me. It looked like the End —and then there was Hope . And an answer that worked
I still suffer . Just this past week we began looking to see if I have a Neuro Endocrine tumor causing current symptoms . The Battle may not end but there is still Hope

I’ve never been able to take any Narco med stronger than Vicodin in a pill form, the 2 I have tried make me violently vomit for hours.

I think my crippling fear of doctors and my 3 other chronic health conditions and 2 acute conditions like frequent large kidney stones are contributing to my feeling hopeless. I had a nerve block this summer that stopped my face from hurting for 32 wonderful days. But I found that I still hurt basically constantly from the joint pain of a still unidentified connective tissue disorder and my constant digestive troubles that have troubled me since birth.

Even if I find a good answer fory face I will not “be well” it actually sent me into a horrible mental health tailspin because for years I had hoped that if I could just help my face I would be “healthy” but I won’t be.

That is rough …my friend who uses Valium for the electric shocks also can only use Vicodin .She just had a knee replaced and of course found it very rough
I understand being frustrated with having un - identified medical conditions . And after seeing how some docs would try to blow me off ( if they could ) because they do not understand all my health issues I would say your apprehension over docs probably has a valid basis .
It gets wearisome having undiagnosed issues . I have kept plugging away because there is not much other choices …and when we do find a diagnosis it’s so xtremely validating
For eight months I suffered the torment of the damned with a. Red hot poker Pain in my eye 24/7 . But I was already on an anti -viral so I did not have the classic Ocular Shingles lesion . I took so many steroids I looked like a monkey with the increase of facial hair :monkey_face:
But finally my ENT showed where I had Zoster DNA and proved it was Ocular Shingles
But that was probably my roughest time
I prayed for Death daily …would not want to go through that again
Well, I will stop . I am not trying to prove anything but to say I have been through the Mill even with being able to use opiates ( they did not make the eye pain much better . It took massive doses of steroids ) And I still believe. In Hope because I have come out in the other side
I thank God but that is just me

I’m sorry to hear that! My Grandma now has Trigeminal nerve pain much like mine from having shingles above and in her right eye. She got it during my 3rd year dealing with my own Atypical Facial Pain/atn and I was happy I was able to be a comfort and guide for her in a very hard time.

She is still in pain but found a combo of Nortriptyline and gabapentin that keeps her pain levels lower. She has been having trouble with a fully fused back that keeps breaking rods through the brittle bones and that causes her more pain and does keep her stocked with high powered pain killers that help the face pain a bit too.

Life is rough for anyone who found their way here. I think we all have or will deal with pain, sleepless nights and medical trauma. Keep up the good fight!

Yesterday was my 8 year anniversary or nonpainaversary after my 2nd MVD. Sometimes I get a tinge of something & kind of freak out but feel so blessed I am still pain free. I suffered for 4 years before getting diagnosed, 16 drs , 3 non related surgeries/ procedures. I feel for everyone experiencing pain & or meds not as effective as they once were. I was on gabapentin/ backlavin & as the dosage needed increasing I pursued surgical methods. When my 1 st MVD wasn’t effective after 3+ years I began the procedure for the gamma knife but freaked out & decided to do another MVD with a different surgeon & so glad I did. TN is so different for every person & the pain is so intense & certainly changed my personality and not in a good way. Also made it difficult to work. It’s wonderful to have this forum & was such a blessing for me.

I am so sorry for all of your pain and like everyone else on the site. I completely understand it! Sending you a hug and positive thoughts

So sorry that you are going through a tough road, please hang in there were here for you?

I spent some time writing and getting through some emotions and thoughts. For the moment I am holding together. I don’t know how long it will last, but I am going to try and enjoy the moments of peace. Thanks for the kind words.

Sorry to hear about your journey… Let me tell you how I have managed my TN (since 2004) and some of the things may help you… Firstly MEDICATION: I have been on heavy doses of different meds and it did not make much difference. I discovered that Tegretol (carbamazepine) worked well with my body and I did not have effects on my blood levels - other meds played with my brain and stopped me doing things… I was fighting the side effects. RELIEF ITEMS: My TN comes with cold, so even in Summer if we have a cold night, that can spark it. One of my first reliefs was heat packs - I carried them everywhere - the ones where you squeeze the metal disk in the plastic pillow of liquid & it all heats up… later you boil it for 10 mins to make it soft again but these were a godsend. Then I had several things to stop stressing, as when you stress about it your muscles tighten and the pain is worse. I have some Geranium Oil - I think the pleasant smell relaxes your face muscles and helps you to relax, even some perfumes can help. I found that by keeping busy I could mentally block the pain, so I taught myself to concentrate hard on what I was doing and now am good at doing this… I do keep busy - belong to many groups - Treasurer of local Lions Club, local Bird group and volunteer driver for local Community Care. A good example is that when I drive, TN never comes, it tends to go away, I believe its because you have to concentrate when you are driving, so you block the pain. My neurologist says I am good at blocking the pain, - I have learnt to be better at blocking pain…
It also does not come when I am in my garden - I love gardening…
So I am always pain free when I am planting veges, tending to Roses, potting new plants or even mowing lawn & triming trees.
VITAMINS & FOOD: I discovered B12 and it has been a lifesaver. I take 1000mcg per day it is water soluable so your body will wash out what it does not need. But this vitamin builds up nerve sheaths and after taking it for a year I noticed a big difference - so much easier to manage any outbreaks and it goes away quicker… I have not used my heat packs etc for several years. TN only comes for a few months in Winter when I used as small a dose of Tegretol as I can manage to help me deal with the pain… I keep my home warm and have my bedroom warm up from about 4am so I wake to a warm room… not hot just 19C 66F I also eat lots of anti-inflammatory foods - Tumeric Latte each morning, Onion, Garlic, Olive Oil, nuts, etc… I am 73 so have some arthritis when this also helps… Hope you can find something from my journey to help you… xx GP


this is great info TY

1 Like

I suppose I can post an update:

It has been almost a year since my op here, and I have had some “lucky” breaks, and some disappointments.

On the bad side: I went through with Gamma knife, it made me feel worse for 3 months and so far has given no relief, but I am back to what I was before it. And I found my Nortriptyline was not effective, pretty much at all anymore.

On the good side: I tried Venlafaxine, which has been much more effective than I expected now that I am on a medium dose and it has been able to replace the Nortriptyline at about the same amount of pain control.
My husband and I sold out house in a super high housing market for a much higher price than we bought it for. This will allow us to move to a smaller city where we can buy a duplex outright (we are still waiting in my parents house for closing.) Owning our own property with no mortgage, and renting out half the duplex should make it less necessary for me to have a job to make ends meet, and so that takes a lot of pressure off me to keep making myself work.

So two steps back and one step forward on health, and an increased chance at some financial security has me feeling quite a bit better than when I first posted.

1 Like

TY for the update.I wish more members would post updates. Good or not so good. It would help the rest of us newbies.

1 Like