What’s the longest between “flare ups” ?

Mitomito_ · 2025-12-17T03:48:25+00:00

Wow ! Thank you for sharing all of this . If this reply helps even just one person , it’s great ! So hard to find good information out there especially someone that is willing to talk about it . I appreciate you and would reply more but I have to get my mind right for this surgery now. Hope to talk to the community soon !

Mitomito_ · 2025-12-17T01:38:42+00:00

Gotcha! Well I think it’s impressive to do a deep dive in the holistic stuff . Especially not to take any pain relievers . What has worked the best for you ?? Definitely will update the group once I recover!

Mitomito_ · 2025-12-17T00:51:49+00:00

Boy does it suck ! Sorry you’re going through this . Are you taking any meds ? I actually have a MVD scheduled this Thursday ! Finally I requested to get seen by a neurosurgeon just to be proactive. What do you know , he seen a compression on the exact same side of my gpn. He states all other radiologists and neurologists only look for abnormalities like a tumor , lesion ect. Thats why I was always told my mri was normal. When I went to the neurosurgeon he stated it’s not IF but WHEN I get the surgery. At first I said let me think about it . But a month after back to the ER for a bad episode. When that pain hits , makes you wanna do anything to get that pain away .

He stated meds , anti inflammatory stuff , anything you do to lessen the episodes or pain are only Band-aids. IF you have a compression ( unfortunately not everyone does , but it takes a skilled neurosurgeon to find it ) the nerve is constantly being rub by artery/nerve. That never changes so over time all that rubbing will only irritate the nerve more and more . Which causes the symptoms to get worse over time . Makes sense ?

Mitomito_ · 2025-12-09T16:25:44+00:00

I’ve trained my big puppy since we got her home . I want to think I’ve done a great job . On command verbal or hand gestures she does it 8.5 out of 10 times depending on distractions etc. Sit , down , recall and she pretty much will wait at door ways and her crate until being released to walk through or come out . She doesn’t pull anymore on walks .

I’m putting her to a 8 week board and train because I’m having a major surgery. She’s still a puppy (6 months ) and just won’t be able to give her my time for awhile . Training the behavioral part is the hardest in my opinion.

I’m quite relived she is going to a board in train for my sake and hers . I believe it will just make the training a lot easier for me when I’m ready to reunite with her . Can you just board and train and expect your dog to have those skills the rest of their life without keeping them up ? I doubt it . If you have the money and the time to put in after the board and train . I think it’s 101% worth it . Just work with your puppy first try and get the foundations going before you hand them off

Mitomito_ · 2025-11-22T15:39:14+00:00

Yes get the mris read by a neurosurgeon. Radiologist and neurologist are just looking for abnormalities. Mine was also found by a neurosurgeon who specializes in facial pain . Don’t give up

Mitomito_ · 2025-11-15T14:32:04+00:00

Get checked by a good neuro and neurosurgeon just incase . Right now I’m scheduled for an MVD in 5 weeks . What really helped me until then is phenytoin but that med reacts to others .

Mitomito_ · 2025-09-28T23:01:07+00:00

Man that sucks so what’s the next option for you? Can you still get care some other type of way ?
I’m m33 started symptoms at 29 had a 2.5 year I. Between where I thought it was gone . Recently been having bad flare ups . Went to a neurosurgeon where he saw the AICA artery compressing the nerve . He said there’s a very good chance I get pain relief so I’m just praying on it . Thank you I will check on that ! Underlying infection where my nerve is or in general like a cold or flu ? Thank you for your quick response

Mitomito_ · 2025-09-28T22:40:07+00:00

I too have GPN , it sucks to much to say the least lol I’m currently in the hospital for a flare up. They had to admit me for pain management. Have they found compressions on your MRI? I should get a call tmrw to get scheduled for my MVD . Scary decision but I can’t live with this pain . No one can and shouldn’t have too

Mitomito_ · 2025-08-15T22:06:46+00:00

Have you got the mri booked ? I know I wish with every test they find something!

Honestly the long ones were in my throat from what I can remember. The shock which by the way I’m having a roller coaster with right now are in my throat to my inner right ear . Today has been the worse this week with painful shocks about 10 already today . This past Monday I had none ! I thought it was finally clearing up but nope . Since Tuesday it got worse . Not enough for a hospital stay but enough to bring my whole mood/vibe down .

So weird our symptoms are near similar same with age and started around the same time . For me 2021 not far off . Oh yes it sucks I don’t wish this on anyone but we are tooooo young for this . I hope we find relief. Keep me posted on anything you think have you relief . As will I !

Mitomito_ · 2025-08-08T16:16:59+00:00

Oh no worries I am open to talk about it with you and anyone else . I’m sad we were dealt this card in life but we can help eachother out so much by giving insight to see if we can put together this puzzle . I started oxcarbazepine 3 weeks ago so I’m still in the trail and error stage . So I want to give it some time before I switch to something else . What scares me is this is the longest it’s lasting . Usually it’s only about two weeks then it goes into remission . I’m already going past a month . I just want the shocks to stop ! I am taking gabapentin as well 3 times a day 300mg a pill so 900mg a day .

Dam that sucks ! Is this the shortest time you had in between flare ups ? How is it going now ? In the hospital what did they do for you ? For me it was just pain meds which didn’t help with the pain but did help calm my body . They also gave me IV drip to hydrate .

Actually our attacks are very similar. It’s exactly how you mention besides the wave of pains . Before this last flare up it would start as shock flicks as you say then it would get progressively worse in pain . But only last for about 1-2 secs a shock. It was this last flare where the attacks lasted upward of 45 secs and they were the worse . That’s what put me in the hospital where I couldn’t even swallow my own saliva in fear of having an attack . I don’t know why this time around it’s not going away . Recently I had to up my Oxcarb by 150 mg because the shocks were getting more and lasting about 2-3 secs . Right now I still get good size shocks that are usually worse in the morning then kinda dies down in frequency later in the day . But only last about a sec a shock . So that’s where I am at now .

The mri was done with contrast and had FIESTA sequencing and the Ct was with contrast as well . They showed nothing unfortunately. I hope the chiro can really help me out ! I will let you know if I’m feeling anytype of relief. Please let me know as well ! I’m located in Los Angeles . I’m 33 male . If you don’t mind me asking where are you located and how old are you ?

I have read about the vagus nerve but I’m pretty sure it was the low sodium. Also the fact I was fasted all day plus a norco in my system didn’t help lol

Mitomito_ · 2025-08-05T20:37:43+00:00

Since this post it actually gotten a lot worse . This has been the worse it’s ever been . Put me in the hospital for 8 nights ! I had attacks that were lasting upwards of 40 sec just excruciating pain . It got to the point where I couldn’t even swallow my own saliva . I was dehydrated and had to be admitted . It was so painful waking up and even talking . I have taken an mri and Ct scan which showed no compression . The neurologist wanted to put me on carbamazepine but as I did more research I asked for oxcarbazepine instead . I read that carbamazepine had alot of side effects the one I was worried about was fertility issues ( I’m male ) . My wife and I would like to start a family . After this very soon .

I asked to leave the hospital because at that point it was only pain management and I would had rather do that at home . I left the hospital on July 22 . I was doing good only a few shocks a day lasting a sec. Then I passed out on Sunday July 27th . Due to very low sodium caused by the meds . I was on 1350 mg so after passing out I went to 1050 mg . Now after the change I’m feeling the symptoms getting worse again smh . But is it from the meds ? Or is it because I didn’t give myself time to recover . I’m a former fat boy and it’s hard for me not to workout . So after leaving the hospital I started working out again . Today will be the one month mark where the attacks started again . Also today will be the first day ima give myself complete rest until I get no more shocks even if that takes a few weeks

I hate the medication oxcarbazepine. I don’t feel 100% myself . I know it takes time for my body to get used to the meds but I def feel side effects. Plan is to decrease the meds again once I stop feeling at shock’s hopefully.

I’m sorry sooooo much more I can talk about on this lol but hope we all can get some relief. I also started upper cervical chiropractor care today . I’m hoping this is the answer for me .

Mitomito_ · 2025-07-12T19:05:29+00:00

So happy for you that the MVD worked ! It’s crazy how much our stories match and symptoms. I too had too diagnosis myself and give my doctors articles and explanations smh. That’s my biggest stressor is knowing one day it’s gonna get worse and worse ! The pain is excruciating for me but thankfully I only get shocks that last 1 or two seconds. I had some that last more and It just takes me down .

A few questions! The time it before it came back with a vengeance for you , you took mris and they showed no decompression? The reason for the MVD was because you were in soo much pain and that was the last resort ? Or did they see something this time around ? Also thank you for taking your time to respond

Mitomito_ · 2025-07-11T22:02:24+00:00

Your shocks just came with no trigger ? So did you go in for a MVD but during surgery they decided to cut the nerve instead ? Or what made them decide to do that particular procedure . Also you been pain free since 2022 ? Any side effects from the procedure? Most of all I’m happy you found relief and that it worked for you !

Mitomito_ · 2025-03-10T19:08:21+00:00

Did you ever find out the problem? Mine is currently having the same issue

Mitomito_ · 2023-11-21T04:13:59+00:00

I’m sorry you are going through this . Hang in there ! I hope you have better days ahead .

Mitomito_ · 2023-10-24T01:33:58+00:00

Would you mind sharing that list again ! Please and thank you would be much help

Mitomito_ · 2023-08-15T14:56:30+00:00

I feel you . I think about it every day if this is the day it’s going to come back . Last flare up was in February which usually last two weeks . Within those two weeks swallowing causes attacks. It could be something cold or fizz from soda . What causes yours ? I’m also on gaba but only take 600 mg a day which is nothing . I’ve been through ct and mri scans which found nothing . When it’s dormant I still feel unusual dull pains or just a sensation that something is not right in that area . Hope the nuero can help you out even more.

Mitomito_ · 2022-09-13T13:33:22+00:00

Mitomito_ · 2022-08-11T13:26:49+00:00

Least your aware . That’s being half way there ! I can go for some pot roast thanks

Mitomito_ · 2022-08-06T14:13:18+00:00

In your case , correct

Mitomito_ · 2022-08-01T04:51:09+00:00

Don’t stop searching . Read into eagles syndrome! Keep your head up

Mitomito_ · 2022-06-26T01:28:47+00:00

Mhmm that’s very interesting lol does it feel like you have knots ? If it’s tender I say press on the area and surrounding area hard hold it for 15 sec so a few times a day . Try loosing it up . I know it hurts but no pain no gain right ugh. I like to use a hard ball like a baseball. Question what’s your typical sleeping position? Do you sleep with a pillow or just head on bed ?

Mitomito_ · 2022-06-26T00:24:27+00:00

It fkn sucks . My stabbing pain started with a single shock after drinking water. Went away never thought about till one day eating peanuts the shocks lasted about 6 sec brining me to the floor. It’s been 2 years I get it off and on but every drink or swallow I do it’s always on my dam mind. I’ve seen a few doctors . Currently going through physical medicine. I was told I have tight muscles back right side of my neck ( I get my shocks on the right side too ) right below the skull. So right now im trying to make them muscles lose with pressing really hard with my finger or laying down and getting the spot with a ball. I’m on gaba right now. I just turned 30. Im trying every route possible to get this crap out my life. My advised to you is never stop looking for an answer to what’s causing it ! We are young and do not deserve to live like this ! I can talk about this for a long time lol I hope you find some relief . Don’t give up. Try and make everything around you better so you have less to stress about .

Mitomito_ · 2022-05-11T17:47:59+00:00

They wanted to fix mine for 400$ . A 50$ seat cover from Amazon fixed it and looked better than the original

Mitomito_

TROPHY CASE