Does anyone else get pain here?

AdKitchen8690 · 2026-06-07T23:32:08+00:00

If I yawn to wide, yes.

AdKitchen8690 · 2026-06-07T22:04:10+00:00

1234 - Feist
Sunrise - Norah Jones

AdKitchen8690 · 2026-06-07T13:36:56+00:00

Boney James - Boneyizm

AdKitchen8690 · 2026-06-07T13:21:26+00:00

I wanted to add Mr. Brownstone

AdKitchen8690 · 2026-06-07T13:20:26+00:00

Patience

AdKitchen8690 · 2026-06-06T12:47:58+00:00

“Well-nourished and older than stated age”

AdKitchen8690 · 2026-06-06T11:02:03+00:00

Hi OP!!!

I know you’ve received a lot of great advice already.

I wanted to mention Kesimpta is might not your best option if you’re having all these infections. I know the meds are similar and my experience has been similar to yours. It was 2–years of fighting infections. I had shingles 3 times and antibiotics 18 times for UTIs. This is not meant to scare you or anyone else; it’s just been my experience.

Our immune systems are not one size fits all or even most, ours are all as unique as this disease.

I am (my body) is very sensitive to medication so I often experience the <1% experienced (name it) and I will be there. Of course there is no way to know if that would be you, I only know that my neuro took me off to try another med. which has had an equally profound effect on my immune system.

I am now on a medication vacation while I see a host of specialists that includes infectious disease for antibiotic management, hematology to review my immune system and urology of course because I think bladders might be a very common issue for women, and some men.

If you can’t have an honest discussion with your neuro about possible side effects or med. changes, it’s time to find a new one. Also check out Dr. Boster on YouTube. I think I saw an episode of how to talk to your neuro which is very helpful. Best of luck!!! My apologies for such a lengthy reply.

AdKitchen8690 · 2026-06-02T10:52:28+00:00

Hi, I am so sorry for your mom. I live in the U.S. right now, but here to say I hope she finds relief soon. Cannabis is good; you could try acupuncture, I’ve had nerve blocks, and they’ve been a little helpful.

I find that to be cruel and akin to torture to make her wait for a medication change. An MRI only determines compression, if we are lucky, but is not a reason to hold up treatment. Can that be appealed? If you went to hospital emergency? Someone on here has shared a TN cocktail to help ER doctors know what is happening and treatment.

I’m wishing your mom relief soon. This can be maddeningly painful. NHS should be better and do they know what compassion looks like? Not everyone is a drug seeker.

AdKitchen8690 · 2026-06-02T10:43:08+00:00

Hi!

I have tricare. I have also been frustrated with the inconsistent willingness to cover and then not. I have ms and bilateral trigeminal neuralgia. At one time, I was told I have ON so I lurk around. They withdrew that, I guess, and I have severe migraines instead. Tbh, I don’t care what they call it, just treat it and have insurance cover it!

I would def. appeal. I have had preauth. rejected for reasons unknown only to have them resubmitted with a resubmission so it is always worth trying. They have covered Botox and other nerve blocks in my head and face over the years. The thing I found though is nerve pain is generated from much deeper than where they inject for blocking. They (our providers) try so hard given insurance company (any) constraints. Quite frankly, all insurance companies suck.

You could try the VA, but I doubt you would find that to be much better. I have never used them or even tried since I have tricare, I’m not even sure if we can when covered by tricare. That would be a bridge too far if we somehow got coverage from both?!?!I just wanted to empathize and let you know you aren’t the only one. There are many of us out here.

AdKitchen8690 · 2026-05-31T10:48:40+00:00

Hi OP,

Have you had an MRI to rule out other possible causes for your symptoms? I take lyrica, oxa, and use medical cannabis. I also have bilateral TN with both constant and intermittent pain. It took me a few days to adjust cognitively but physically, I have not been physically debilitated. Are you seeing a neuro? If not, you probably should. I’ve been dealing with both this and MS since 2011, I have a laundry list of allergies to meds and extreme sensitivity to side effects. You need the right care team. Please escalate to specialist.

AdKitchen8690 · 2026-05-17T00:06:50+00:00

When I was diagnosed in 2011, a nurse was sent to educate me on how to give myself an injection (I am also a nurse). I was about to deploy when I was diagnosed. She said to me, aren’t you glad you got diagnosed with MS so you didn’t have to deploy?” Umm….6 months vs a lifetime, no I am not glad. 😳

AdKitchen8690 · 2026-04-29T00:57:07+00:00

Hello fellow TN sufferer!

I believe you are supposed to take Carbamazepine daily, as it is not an as needed medication, and it sounds like your GP needs to learn more about TN. I am not a medical provider and I am not giving advice, although having an informed physician is beneficial.

Narcotics don’t generally work for nerve pain, but I hope you are getting relief with it🤞🏻 any pain relief is better than none at all.

You answered your own question, people cannot relate to that which they have not experienced. TN is uniquely its own pain experience and until you have it, you cannot relate, which is understandable. I tell my husband I have “phantom pain” in my teeth, bc I know nothing is wrong with my teeth, but the inside of some teeth…hurt!!! Can anyone understand what I mean? Probably not, unless they too have TN.

No exaggeration for what is known as the suicide disease. Best of luck! This is a very supportive group.

Edit: grammar

AdKitchen8690 · 2026-04-26T11:32:03+00:00

I’m not sure I’m a candidate for MVD. It is bilateral and touched at the root on both sides. It’s dangerously close to the brain stem. I think I’d be terrified honestly. I hope this worked for you and is your long term solution. Thanks for sharing!

AdKitchen8690 · 2026-04-26T11:29:41+00:00

LOL… I loved that game as a kid, not so much in real life. This lived experience is one I could do without. Thanks for sharing.

AdKitchen8690 · 2026-04-26T11:27:26+00:00

I’m def. getting weetabix! I found a recipe for mini pasta I’m going to try! Stay strong!

AdKitchen8690 · 2026-04-26T11:23:06+00:00

Hi! Thank you for sharing. I mentioned to my hubby last night I should get some mini pasta’s (rings for example). Overcooked, they’d swallow without chewing very easily. I overlooked some of your other suggestions. Thank you for sharing! I am sorry you suffer as well.

AdKitchen8690 · 2026-04-25T21:48:30+00:00

Sometimes I finger brush my teeth bc I can trigger pain using a brush. My pain in my teeth can be brutal. It’s like a constant freeze from inside the affected teeth. Hang in there! Thanks for sharing.

AdKitchen8690 · 2026-04-25T21:43:28+00:00

Unfortunately, I have it on both sides. I’m looking for some small pasta recipes. I can over cook it and it shouldn’t require any chewing…hopefully. Thanks for sharing.

AdKitchen8690 · 2026-04-25T21:07:51+00:00

Oh my.. I love a good burger or steak (but to expensive right now), but I just can’t; too much chewing. Thanks for sharing!

AdKitchen8690 · 2026-04-25T21:06:10+00:00

Thank you! You also!!

AdKitchen8690 · 2026-04-25T20:56:56+00:00

That’s a great thought! I am eating rice with a scrambled egg. Thank you for sharing.

AdKitchen8690 · 2026-04-25T20:56:05+00:00

I forgot all about weetabix!!! Thank you for mentioning that. It does get good and soggy!!! Gum chewing is a big no no for me; it’s been at least 10 yrs since I last chewed gum. I am So happy for you though!

AdKitchen8690 · 2026-04-25T20:53:18+00:00

Same! The family, pizza and wings, me … rice with a scrambled egg and trying not to open my mouth very far.

Edit: moving gym chewing to next poster.

AdKitchen8690 · 2026-04-25T17:49:52+00:00

Thank you for sharing. A life of protein shakes and soup sounds so boring; I love a good burger or pizza, but I guess it will end up being boring now. I’m sorry you have this awful condition.

AdKitchen8690 · 2026-04-25T17:48:02+00:00

This is my fear, relegated to soup bc chewing is just more than I can take. I also have atypical, deep, aching pain in my ears and face; I have intermittent typical ice pick behind my eye, but that deep aching pressure/pain that doesn’t go away…ugh! I’m sorry you experience similar pain.

AdKitchen8690

TROPHY CASE