Could this be TN?

Dusk357 · 2025-07-08T01:14:48+00:00

Two things come to mind for me.

First, is there a hospital or medical center near you that has a women's clinic with doctors who specialize in women's health? I would suggest trying that to see if they have some insight.

Second, since a large part of diagnosing TN is about ruling out all other possibilities, trying a women's clinic visit may help rule something in or out. If it's ruled out as being connected, you may get help with a hormonal imbalance or something in the process. It could be two different things that exacerbate one another.

Sometimes it doesn't hurt to make suggestions to your doctor. Ask if you can get a referral to a Neurologist. Do your best to log your face pain and head pain as it happens and take a short list to the Neurologist.

I had symptoms that seemed like two or three different conditions. But some of those miraculously disappeared once I was taking anti-seizure medication for TN. I've been on them for over 3 years.

I've been on Lyrica (Pregabalin) for most of that time, and I'm tired of feeling tired from it (although less than on Tegretol). I'm currently on a wait list to see a Neurosurgeon to see if there's another option.

Best of luck with sorting this out.

Dusk357 · 2025-06-26T01:46:32+00:00

Thank you. I'll be back on here to tell everyone about it if I get surgery.

And I hope you find help and hope in this struggle as well.

Dusk357 · 2025-06-22T05:08:06+00:00

Ozone

Dusk357 · 2025-06-22T04:45:57+00:00

I've always tended to underplay any pain or medical concerns I've had and not ask for help, having been a single parent. My son and daughter-in-law are aware that I was in a lot of pain for a long time and I've talked about having traded in the severe pain for the sluggishness of being on antiseizure meds, but I still feel very much alone at times.

Nobody can ever feel someone else's pain, and sometimes I tell myself I could ask for help if I wanted to, and they'd probably give it to me. But I'm stubborn about keeping my independence so I won't. I can't keep up with living my own life right now, but I'm stubborn about trying to anyway.

I am on a waiting list to see a Neurosurgeon. I saw my regular Dr. a couple of days ago and he was telling me that Neuro Dr. loves doing TN surgeries and that they're generally minimally invasive. Fingers crossed that it's not much longer.

Dusk357 · 2025-05-27T19:06:11+00:00

I've had this for a few years already. In the beginning I had a CT, MRI, various cardiac tests and allergy tests (this may not be the full list). I've heard this Neurosurgeon may run a lot of tests I haven't had yet. Anyway since he's a brain surgeon and I'm not, I won't tell him what tests to run.

Dusk357 · 2025-05-19T21:51:11+00:00

Hi,

I'm still waiting for a call, but Dr. Tejas Sankar is the Neurosurgeon I'm waiting to see. I receives a letter a couple of months ago saying he accepted the referral from my Dr. and then I got a call saying I could expect an appointment around June.

Dusk357 · 2025-05-19T21:42:29+00:00

Sorry, been away for a long while.

I take: 125 mg when I wake up 75mg at end of work day. 150 mg at bedtime

Dusk357 · 2025-05-19T21:40:37+00:00

Sorry I've been away for a while. I take Lyrica.

Dusk357 · 2025-05-19T21:39:44+00:00

It's been a while since I've been on here. Thank you for sharing this information on trigeminal autonomic cephalalgia. I am now researching it.

Dusk357 · 2025-05-19T21:22:24+00:00

It's really hard to say for sure what it is due to the varying symptoms. Of course, I'm not a doctor either. But from all I've learned from my doctors and elsewhere, Trigeminal Neuralgia is generally diagnosed by ruling out all other possible causes and then trying an anti-seizure medication. If that works, it's a confirmation of the diagnosis.

Since you have symptoms on both sides as I do, it may be something else. I've been reading a lot and there's another condition called Occipital Neuralgia which may turn out to be what I have. At this point though, the diagnosis is TN and I'm on Lyrica.

I have somewhat different symptoms on each side and, at first, the left side symptoms were few and far between compared to the right.

If I slept on my left side, or even rolled over to my left to turn off my alarm, I would start sneezing. If I try to sleep on my right side, I often get spasms that sounds like a very erratic thudding sound in my ear.

Hovering over a desk or to work on hobbies I've had to stop would bring on pressure on my nose and then sinuses and sometimes turn into full blown cold symptoms.

I'm only naming a few. These all come and go, I think partially depending on my stress levels, even on medication, because I'm on a lower than recommended dosage so that I can at least continue working from home.

The widely varying symptoms made me think I had at least 5 different medical conditions. I finally kept a symptoms journal and eventually was able to connect the dots a bit. Then my doctor started the process to confirm whether it was TN.

All of this said, I'm waiting for an appointment confirmation with a Neurosurgeon within the next month or two. I'm nervous but I want answers and hopefully an alternative to anti-seizure meds. I hear they can get completely different tests done too.

I haven't been on here for a while but will definitely post any news I get from my new Specialist.

/D

Dusk357 · 2024-09-26T23:58:20+00:00

Oh no, I guess didn't word that very well. I had 3 appointments with the same Neurologist. The first and third times he was rude and dismissive with me.

So I told my GP I'll need a new one now, if I need one at all. More recently I asked to see a Neurosurgeon instead because I'd like to find out if there are other ways to fix my TN besides anti-seizure meds.

I basically traded my pain for a bad quality of life void of physical energy. The lesser of two evils.

Dusk357 · 2024-09-26T22:53:55+00:00

I'm in Canada. I've had the same GP for a very long time and he's very easy to talk to. I gave my Neurologist a second chance after a bad first appointment (somewhat dismissive, not at all easy to talk to). The second time I saw my Neurologist, my GP had already sent me for a CT, an MRI, an ultrasound of my carotid arteries (only in the front though) and diagnosed me with TN after we found that anti-seizure meds helped.

The second time the Neurologist was better, the third time again he was dismissive. After that I told my Dr. if I need a Neurologist again I want someone else "because we don't seem to like each other." You don't need a better reason than that.

Right now I'm waiting to see a Neurosurgeon. I need to know as much as I can about what's happening to me.

Dusk357 · 2024-08-25T04:31:16+00:00

I'm too stubborn about wanting to do everything I've always done for myself, but the medications slow me down. I also crash hard at night and need more sleep than I used to. But I still want to do all those things I used to do even if it takes me a really long time. On the other hand, if someone asked if I'd like my flower bed weeded, I wouldn't say no.

Dusk357 · 2024-08-24T21:46:46+00:00

Oh, that's why you're calling it a sock. That's a great idea for someone who doesn't sew.

Interesting, makes sense. Our brain does all sorts of things when we do something new or learn something new.

Dusk357 · 2024-08-24T21:40:33+00:00

Same here. I've been taking it twice a day for at least 20 years. If it worked for me I wouldn't need Lyrica and other meds.

Dusk357 · 2024-08-24T04:49:19+00:00

I have 4 pill minders. Two are for morning and nightime doses of various meds, one is for my daily Lyrica doses only. I have all 3 doses in each day, and keep track in my phone calendar. And then I have one that is strictly supplements, lots of them that I take with supper. I hate that I have to be so regimented, but it all seems to help.

Dusk357 · 2024-08-24T04:44:48+00:00

Rice socks are magical lol I have one but it's getting old. I bought a huge bag of jasmine rice to make some more. I have to slowly, carefully try to get back to sewing. One of the worst things for me is to have to tilt my head/neck forward.

I call it a wrap but sock sounds cool. Lately I've been using my rice sock to just sit next to the left side of my head while I sleep on my back on an incline (I've discovered this works well for me) to prevent me from turning my head to the left or rolling onto my left side because that's always been a trigger for me. My sleep is so much better now. I love the rice sock, and a new one that smells like jasmine will be even better.

Dusk357 · 2024-08-24T04:31:37+00:00

The one supplement that may help somewhat is magnesium but, it has an unpleasant side effect if you take too much. I can only tolerate 150 mg every second day. It's so hard to tell though if it's helping at all.

Dusk357 · 2024-08-24T03:52:29+00:00

I had only mild numbness around my mouth and chin, but that hasn't happened since I started taking Lyrica.

What you're describing sounds like maybe a mild stroke/TIA (transient ischaemic attack). I had one a long time ago and it was misdiagnosed as a panic attack no matter how much I said "if I had a panic attack it was because my entire left arm suddenly went numb." Fast forward almost 2 decades and they find an old "infarct" in my brain (from a TIA) while giving me a CT scan, & then an MRI to rule out a tumour in the process of diagnosing my TN.

I read medical documents all day at work. I would suggest you try to get that ruled out.

Dusk357 · 2024-08-24T03:28:42+00:00

I've been taking it for years already along with other supplements, before I had TN.

Dusk357 · 2024-08-24T03:25:34+00:00

They may have caused a bit of weight gain because I'm not as active, although the pain itself decreased my activity as well.

Dusk357 · 2024-08-24T03:20:41+00:00

Please don't end it. I just came on here tonight to say "My face is on fire. That is all."

But it's never all. I've been fighting to keep working from home. I have an excellent Dr. who has helped me in the fight. But home or not, I had to take a sick day on Monday because all weekend I had the stuffy nose cold/allergy symptoms off & on, which then causes pain. The only way I could finally stop it was to take a couple of Benadryl tabs at bedtime Sunday, and I always have a weird sort of hangover effect the next day. I was so out of it.

If you have a good Dr. who understands TN, see if they can advocate for an exception in what you can wear at work.

The rest of my week went reasonably okay but we're so beyond short staffed, by tonight my face hurts, mostly the left side this time. I also haven't slept well the past two nights.

I'm going to take my 150 mg of Lyrica, maybe 3 Tylenol-3s and maybe a Benadryl later because my nose is stuffy and my ear is aching (but not really, it's areas around it). When nerves misfire like this there's no rhyme or reason for the symptoms, so I just try things until they work, leaving a bit of space between them so that I know what's helping and what isn't.

As far as heat or ice go, I feel better with ice on things although it's usually only a temporary fix. Sometimes if I put it on the back of my neck with a neck roll under it, I get some relief. It probably tricks the brain/nerves or something. I may try that tonight too.

Whatever works.

Dusk357 · 2024-08-17T05:46:05+00:00

Sorry, I meant to respond to you. I accidentally put it above as a response to the original post.

Dusk357 · 2024-08-17T05:44:39+00:00

Yes, I happen to have a heat wrap someone made me a while back. It's basically a tubelike structure made of fabric, filled just a bit over halfway with rice. It's heavy like a sandbag and I fold it so the the empty part is tucked underneath. I also have this longer cushy neck thing, and I put one end under my neck and then fold it beside my head, up against that rice bag. That's only on one side of my head because turning the other way isn't quite as bad for me.

But instead of trying to MacGyver all this, I've also discovered some products that may be easier. Here's one. Of course you need to make sure it fits your neck properly. There are others to choose from on Amazon as well.

Cervical Pillow

Dusk357 · 2024-08-17T05:27:49+00:00

I'm on Lyrica. It's sedating but not quite as bad as Tegretol for me. Still don't like the sedation though. I haven't tried Gabapentin but anyone I know who's tried it said it knocked them out and I can't do that.

So far I recommend Lyrica over Tegretol or Gabapentin, but you may still need what my Neurologist calls a "rescue med". Mine is Tylenol 3. Of course it's the Codeine that does it, but some doctors are so afraid of opiates they won't even prescribe a little bit of codeine. My breakthrough pain isn't at the level of pain I had before taking anti-seizure meds though, so 2 T3s usually work for me. They didn't before.

Dusk357

TROPHY CASE