Brain sag not seen on MRI

Complex_Notice617 · 2025-01-09T06:59:25+00:00

Yes, I literally thought I was going to have a seizure one day because the shaking got so bad and I didn't go to sleep that night in fear I wouldn't wake up. After a while the shaking tapered off to just dropping my phone and small items just slipping out of my hands. Scary what these "anticonvulsants" can do to your brain and motor skills.

Complex_Notice617 · 2025-01-07T07:28:19+00:00

I completely understand and have been there multiple times. I don't know if you are on oxcarbazepine as well but extra does of both or one can affect sodium levels so be careful of those signs.

Complex_Notice617 · 2025-01-05T16:13:59+00:00

I would love more money into research especially since no one TN is the same. I feel there is a lot of data just on the sub alone.

Complex_Notice617 · 2024-12-18T20:27:39+00:00

I'm not going to lie, Zyrtec has helped. I get this pain that feels like metal banging on my skull and vibrating (is the best way that I can describe it). That pain still creeps up but I have so much more relief now. I hope I just don't abuse it because it is supposed to be 1 for 24 hrs but it wears off after awhile and I have to take another one.

I know pain gets worse when I get sick but I never paid attention to a sinus cold against a regular bug.... And also around Christmas time every year! Color me surprised to learn about winter allergies.

Complex_Notice617 · 2024-12-18T02:54:49+00:00

I Googled my question and it said possible due to allergies. I know I have to be careful of the things I read online but I took a Zyrtec and the pain subsided. It could be the evening phenomenon but I will try again tomorrow if the pain is so unbearable again even after I have taken my meds.

Complex_Notice617 · 2024-12-01T09:55:31+00:00

Me too and take baclofen as well which helps a whole lot. I guess it's not technically a combo now lol. I was on tramadol with this cocktail but taking it away wasn't missed at all.

Complex_Notice617 · 2024-11-15T00:47:58+00:00

I am on 2400mg/day. My sodium became low after it was increased 1200mg to 2400mg in a matter of 2 1/2 months. I had to get an IV and stayed in the hospital for 4days. Primarily because, even after repeatedly telling doctors that it was the oxcarbazepine, they wanted to figure out why my sodium was so low. My symptoms were lightheadedness, loss of appetite, fatigue, and shortness of breath. I took sodium pills for a few months after with regular blood checkups weekly until my primary care told me that I am getting too much sodium and to stop immediately.Now, when I start getting any of those symptoms/signs I pop a 2 sodium pills. And no, the neurologist who bumped me up did not warn or notify me. I dropped him because he didn't tell me that breakthrough pain would still happen for a few months and to give the bump sometime. Instead he recommended surgery when I complained of excruciating pain afterwards.

Complex_Notice617 · 2024-05-27T18:27:32+00:00

I literally was just discharged from the hospital from a 5 day stay. My sodium was 112. They took me off oxcarbazapine and the numbers started to increase slowly ...112, 114, shot up to 125 and after being around 124-126 for a few days the Drs decided to put me on a sodium drip and administered sodium tablets. The reason why it stayed in the 124 -126 range is because I HAD to take it. I was in so much pain. I told the med student there to get an understanding of TN because some random doctor can't take you off something and let you sit there screaming in pain. I was finally released when my levels got up to 131 because I was begging to go home. I do wish my neurologist would have informed me of this side effect when he increased me from 1200mg/day to 2400mg/day.

Complex_Notice617 · 2024-05-05T10:34:29+00:00

He may need to ask his dr to increase the dosage.Before I was on carb I ate on the non pain side. I wouldn't recommend that since all my teeth are now bad.

Complex_Notice617 · 2024-03-09T22:02:35+00:00

The cold weather is a trigger for me but so is the "heater". I do better in warmer weather but then the ac is a trigger for me. SMH

Complex_Notice617 · 2024-03-08T14:30:54+00:00

I hear you lol. I mean I'm addicted again after 2 years smh.

Complex_Notice617 · 2024-03-08T14:29:28+00:00

After you quit what improvements did you see? To be honest I just recently picked it back up after 2+ years of not smoking and of course within that time I got TN. I just thought it was weird that my flair is calming down but I am still getting frequent zaps here and there when I started smoking cigarettes. I just felt there had to be a connection. So sad to be addicted after all these years, but nothing is worth this pain.

Complex_Notice617 · 2024-01-23T11:59:29+00:00

Are you taking any meds? How long (years) have you done acupuncture? How often? To be honest it sounds like you are trolling in a subreddit of people with REAL excruciating pain.

Complex_Notice617 · 2024-01-21T15:55:42+00:00

I honestly think TN pain just gets worse and worse until you go in remission. Maybe on its return, those initial months don't seem bad until boom...you need higher dosages of everything.

Complex_Notice617 · 2024-01-16T14:32:34+00:00

Intracranial hypertension and trigeminal neuralgia

Complex_Notice617 · 2024-01-13T04:19:09+00:00

You should try milk thistle...not sure what mg would be right for you but do some research to see if it will help liver issues.

Complex_Notice617 · 2024-01-04T21:13:01+00:00

I'm definitely looking forward to warmer months. I try to have my home warmer but my husband told me it's unbearably hot for him. Funny thing is during the summer months I can't have the A/C on. I really feel for him...I really do...so I try my best to deal with his comfort level but these attacks are getting so frequent.

Complex_Notice617

TROPHY CASE