Helpless, hopeless, searching

I was diagnosed with trigeminal neuralgia in December after having two root canals and one of those teeth pulled. I wanted the other tooth pulled but the dentist wouldn’t do it. I ended up in the emergency room finally. I have MS and they found a lesion on my trigeminal nerve area. I thought that they might at that point as I had been researching to find out what was going on because I had never been in so much pain in my life. I’ve know chronic pain too. I’ve had endometriosis since I was thirteen years old, migraines, herniated discs but I’ve never described a pain as a 10. I was saving it I guess. In the ER, when I finally went and was just shaking from the pain I gave them a 10. They gave me Dilaudid and Fentanyl which did nothing because ofc its neuropathic pain. They gave me tegretol and said that I could stay I could keep trying the fentanyl but why? So I went home.

I was back three days later. This is time they made me stay. My blood pressure and blood tests were wonky. I was in the hospital for eight days. They started me on baclofen and tramadol and upped my tegretol and gabapentin. After about the eight day of being on tegretol I finally went down from a 10 to an 8. It was not heaven but it was great. I felt like I could breathe. From that point my pain would go from a 4-8.

Oh yes, this is where I am so confused. I read on here over and over where people say they are screaming with the pain. Maybe it’s where my pain is. Mine is in my upper right jaw. But I can barely talk when I’m in pain. Most days I don’t say a word until my daughter comes home from school and I save all my energy for that. How do people scream? It doesn’t seem possible to me. Maybe someone can explain that to me.

They took me off the tramadol and put me on methadone. Who knew? It works for neuropathic pain. But five days later after a blood test they made me come back to the hospital because the tegretol was lowering my sodium level. Omg, I didn’t want to go back. But my PCP convinced me she said I could have a seizure. They lowered my tegretol even though I begged them not to.

I got out five days later and saw a pain doctor who scheduled a trigeminal nerve block. I’m not sure what worked, what happened but three weeks later I had six days of absolutely no pain. It was heaven. I thought I was in remission. Like a remission that would last. But it came back.

And then ten days ago then level 10 pain came back. Oh, I forgot to say I have constant atypical TN because of the MS so I have a constant aching pain and then for me a stabbing burning screwdriver that goes deep into my gums. Right now the attacks are so often it feels constant.

I am beyond miserable. I haven’t left my house except doctors appointments since December. I have a 7 year old child. I live with my mom. My ex and I split time with her. I can’t drive because of the low sodium from the tegretol. I can’t talk on the phone because I can’t talk most of the time.

But right now I can’t hardly make it past this next minute. I don’t know how I’m going to do this. I have another trigeminal nerve block schedule March 12th. I’ve had Spg blocks and stellate ganglion blocks every week. I’m on so much medication you could kill a horse. I know about MVD. I’ve seen a neurosurgeon. I waiting for a medical marijuana card. I’m doing everything I can possibly do.

But I’m telling you I honestly don’t know how to survive this the next hour, much less the next day or the next week or the next month. How?

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Try a lidocaine patch on your jaw. It’s a topical anthestetic and might knock back the burning ache.

Atypical often responds to trileptal. It also tends to respond to hydrocodone and codiene. Just because fentayl failed that doesn’t mean other pain meds won’t work.

Do not give up! You just need to find the right combo. What are you taking for MS? Could that be causing sodium problems as well? Sometimes layering the meds creates bigger problems than taking one med alone.

ATN tends to respond to combos, do not give up!

Oh my galimatias, it sounds like you are really having a difficult time. I’ve never had that level of pain, it sounds really awful. Please try to keep your hopes up, sooner or later you will find something that will make your situation more manageable. Until then, take care of yourself as best you can and don’t be afraid to reach out for help, as you are. Don’t stop doing as much research as you can and educating yourself about this awful disease. And keep hounding your doctors so you can get the help you need if you don’t think they are responding effectively for you.

I agree, look into the topical anesthetics, a lot of them you can get OTC and experiment with. Keep track of your pain level and try to see if there are patterns as to when pain is increased or reduced, so you can try to improve your situation and avoid any triggers.

Please keep us posted on how you are doing, we care.

Thank you so much for your reply. I am taking copaxene for my MS.

I had lidocaine patches in the past for my back and they were wonderful, worked really well but my insurance stopped paying for them and now they cost $400. One time my mom bought them for me because they work better than painkillers and I told her never to do that again because I felt so guilty. So expensive.

Do you know of a patch I’m not aware of maybe?

Unfortunately Vicodin doesn’t work for me I was on it in December when I had the root canals. Well I guess maybe it wasn’t a very high dose. I could talk to my doctor about that but then I would have to stop taking methadone because I won’t take both at the same time.

I haven’t tried codeine yet either.

I see the pharmacologist soon. I will ask him.

Thank you so much Ziggy. That was a really sweet note. I have to say I’m very thankful today. The pain has gone from pretty much constant to where the attacks happen every five to fifteen minutes. So I’m getting a little break.

Believe me I’d love a longer break. But I’m very thankful for that. I hope it continues. I had a stellate ganglion block on Thursday. Perhaps the steroid kicked in. I can do another one this Thursday.

It is much more manageable but it’s still so hard. My ex brought my 7 year old daughter over and I was using sign when I had attacks because I couldn’t talk. My ex knows fingerspelling so we are trying to teach Anya how to communicate that way. But she’s very resistant.

Since I’ve been so miserable we decided she would stay longer at his house. I miss her so much right now. Three months ago I was a 24/7 mother volunteering doing play dates taking her to museums and now I can’t even have her over on Sunday night because it’s too hard.

Sorry I was saying thank you and veered into a totally different direction. I’m trying to stay positive. So again thank you, it means a lot to me that you would write that. I will read it when it is hard. It will help me.

Many blessings to you.

I use Nyloxin oral spray to alleviate pain from the episodes I get (in addition to Tegretol daily). Nyloxin was recommended by my pain specialist last year. I was diagnosed with gpn several years ago and have struggled with severe searing and stabbing ear pain that lasts for several hours. The attacks were becoming more frequent and I can’t tolerate higher doses of tegretol, surgery was not recomended, so I was searching for anything that would help. I was very skeptical because Nyloxin’s active ingredient is cobra venom. I bought it and decided to try it during a level 10 episode, figured I had nothing to lose. Much to my amazement my pain was completely gone within minutes. I only use it as needed, although it was suggested I use it 3 time daily. It hasn’t failed me yet. My Dr. said it works for his TN patents as well. It’s not prescription, it can be ordered from or Amazon. There are other brands on Amazon but I only use this since it was what my Dr. recommended. They currently have regular strength only, so I double the dose since I was using xtra strength. They also recommend replacing the bottle after it has been open for 3 months, I have found it does lose its efficacy so I reorder after 3 months. I hope this could help you and others with facial neuuerolgia as well.

I am hoping and praying that you will have better days. What about essential oils? I have seen testimonies on-line of people who get excellent relief from them. Maybe you will. It is worth a try anyway!
I did not get this, but some people do.(I have TN, 9 years now, no MS though)
Lately what has helped me , unbelievably, is chiropractic treatment. Some of my upper vertebrae were compressed, and visiting the chiro. seems to be helping.
We are all with you, and pulling for you.

Hi galimatias, I know how you must feel. I went through the same thing and used Fentanyl but it did help me. I also have the Peripheral neuropathy and a lot of the things don’t work. I am now taking Hydormoraphone and if I take enough of it, it helps. It is as strong as Morphine and is about as addictive too. I am like you in that TN is about 10 +. I guess that’s why it’s called the suicide disease. Well best of everything to you

Lidocaine – it’s available over-the-counter in USA and Canada as SalonPas. It contains 4% lidocaine and is fairly cheap per box. The prescription lidocaine patch is 5% strong and comes in a box of 30 for your generic copay. You should absolutely do an appeal through your insurance using the diagnosis of atypical TN. The appeal for back pain probably won’t be approved as lidocaine has a very poor track record with back pain and the like but using ATN should get you an approval. I can help you with it if you like, I’ve worked in prescription insurance for 15 years.

You’re right you can’t combine methadone and other pain meds but others might work better. I don’t believe methadone has a good history with nerve pain, it’s better on cancer pain. You may want to explore codeine options and hydrocodones and oxycodones with your doctor. I lean towards hydrocodone (vicodin) because it contains an anti-inflammatory as well and I’ve found that helps me a great deal in combo with pain meds.

There is another patch that may help. Recently a 8% capsaicin patch was approved and some recent reports indicated it was as good as, maybe better, than, gabapentin. Capsaicin is the active ingredient in hot peppers so the only side effect is burning if you get it on any mucus membranes. The patch requires a Rx. There are also capsaicin creams available over the counter as Zostrix or any real good arthritis ointment. Of course, it is less than 8%. I knew a lady in Canada that had her TN under total control just using this cream. I tried it but it didn’t work for me. Good luck and hope that it helps you.

Hi Galiamatias,
Try a hot soak in the tub. Up to back of your head. This helps relax all of muscles and tensions.
Acupuncture at a licensed practioner cured me the excruciating pain by the 6th session. I hope you will be able to find a licensed tcm/acupuncturist near to your home.
Zero sugar diet / make sure level in your blood is low to avoid further nerve damage.
Be strong and well soon.

Hmmm okay I will talk to my pharmacologist when I see him next Thursday about getting that approved. I haven’t had any success though with salonpas or using the lidocaine cream he suggested. :frowning:

I am going to discuss trying some other medications since I’m still at such an unmanageable level of pain. I don’t want to increase the methadone. I’m already so sedated from all my medications. I’m bipolar as well so the medications for that are also sedating.

Hmm I was just replying above because i haven’t had luck with patches or creams but maybe I’m not putting them on the right spot?

Thanks tnsaved yes I love baths. I always feel like hot water has helped with my endometriosis pain in the past. I’m not sure how to get my entire head under water in my bath her though. It isn’t that deep. But I’m going to try. I have also been thinking about acupuncture a lot. I just don’t want to try too many things at once and I’m having my third stellate ganglion block done this Thursday. Next Friday they are going to do the trigeminal nerve block too.

Thank you wheels4legs, yes last week I understood the horrible name suicide disease. I wasn’t depressed. I wanted to do a million things. But I was in so much pain I really didn’t know how I was going to be able to continue. I’m so relieved that it has relented a little this week. It’s gone down to an 8 which makes me miserable but also very dedicated to finding an answer and fixing this. I just keep thinking of my 7 year old daughter and how she needs a healthy mom. I hope things get better for you. Blessings to you.

Hi kudasai thank you for your note. Yes I was given the name of an oil from a site It is a homeopathic oil. I’m going to try it. I will try anything. Just trying to make sure I keep a handle on what is working. I don’t want to do 100 things at once as much as I want to keep throwing things at it until it works. Thank you again for your note.

Hi there,

There is good news for all of us … we have 100% track records of getting through the bad days regardless of how we do it, we just do!

I’ve had two MVD surgeries, the pain abates for about eight months, and then returns although not as a constant relentless sharp burning pain …
My condition is atypical Glossopharyngela Neuralgia, and the pain is deep in my right ear and during bad attacks, it spreads into my lower jaw and right eye socket … yes, it’s dreadful, but I am not ready to let it beat me… I’ve had to give up my professional practice of 25 years, but have evolved myself and am finding other pathways to follow and find fulfillment in being useful, even if it’s not permanent employment, I can at least do something on my good days (usually one or two a week) … I’ve found huge solace and creativity in knitting, initially very badly, but I’ve got much better and knit for an online shop now … so, take heart, we can live with this… it’s not the end of our lives as we knew it or as we used to be, it’s hard not to mourn all that we’ve lost … but it’s getting to live with and know the new me, and find ourselves all over again … not many people get the chance to start afresh.
God bless, and keep the faith … TN CAN be conquered, one day at a time!!

Quite wise gal! One thing at a time, one step at a time, one day at a time.

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Hi Hon, Yes we have a hard row to hoe, (a saying that my mother used to use when we complained about how hard the ground was in the garden) I’m glad that you are feeling a little better. It’s usually not a permanent thing though. Very best to you. Hang tough!

Hi, I am sorry your having to go though this. I hope one of my tips help a little. I don’t know if anyone has said this yet but don’t touch your face with anything. Not your hands, your cellphone. I don’t let anyone kiss me on the face. Hugs are iffy. Also, It’s amazing how often we touch our face. It took me a while to break the habit. I also had to cut my long hair that I loved, very short. I don’t go outside except for doctor’s appointments either. All of the vents in the house are turned where the air doesn’t blow on me. I use a tiny toothbrush and sensitive teeth toothpaste only. Another trigger for me is steam from cooking and the blast of heat when first opening the oven door is bad too. I am sure there is more. My list of medications is very long and it took changing doctors a few times to really get some help. It’s a journey and a hard one but I mostly have good days considering. I know your strong enough to make it. I like to tell my husband, “I was a single Mother of 3 girls. If it has to be done. I will be done.” Fight hard to survive for your daughter." It’s great your Mom is there to help. Let her and don’t feel guilty. As a mom I think she wants to help ease your pain. It’s a trail and error for the meds. Ha, I hope this all makes sense I just started Medical Marijuana today. Gentle hugs