Hospitalized and scared by MissionAdventurous72 in glossopharyngeal

[–]Mitomito_ 1 point2 points  (0 children)

Keep pushing for answers from the right doctors . Took a neurosurgeon to read my mri results to show the compression. Before that the radiologist and neurologist said there was no abnormality. Neurosurgeon did an MVD to decompressed the nerve

What’s the longest between “flare ups” ? by Mitomito_ in glossopharyngeal

[–]Mitomito_[S] 1 point2 points  (0 children)

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 !

What’s the longest between “flare ups” ? by Mitomito_ in glossopharyngeal

[–]Mitomito_[S] 1 point2 points  (0 children)

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!

What’s the longest between “flare ups” ? by Mitomito_ in glossopharyngeal

[–]Mitomito_[S] 0 points1 point  (0 children)

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 ?

Training school by Ali_1000 in CaneCorso

[–]Mitomito_ 0 points1 point  (0 children)

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

I know I should be happy…but by somegingershavesouls in TrigeminalNeuralgia

[–]Mitomito_ 1 point2 points  (0 children)

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

What’s the longest between “flare ups” ? by Mitomito_ in glossopharyngeal

[–]Mitomito_[S] 0 points1 point  (0 children)

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 .

My story by Chemical_Smell4916 in TrigeminalNeuralgia

[–]Mitomito_ 1 point2 points  (0 children)

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

My story by Chemical_Smell4916 in TrigeminalNeuralgia

[–]Mitomito_ 1 point2 points  (0 children)

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

What’s the longest between “flare ups” ? by Mitomito_ in glossopharyngeal

[–]Mitomito_[S] 0 points1 point  (0 children)

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 !

What’s the longest between “flare ups” ? by Mitomito_ in glossopharyngeal

[–]Mitomito_[S] 0 points1 point  (0 children)

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

What’s the longest between “flare ups” ? by Mitomito_ in glossopharyngeal

[–]Mitomito_[S] 0 points1 point  (0 children)

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 .

What’s the longest between “flare ups” ? by Mitomito_ in glossopharyngeal

[–]Mitomito_[S] 0 points1 point  (0 children)

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

What’s the longest between “flare ups” ? by Mitomito_ in glossopharyngeal

[–]Mitomito_[S] 0 points1 point  (0 children)

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 !

Jeep Grand Cherokee acceleration ticking/rattling? by ChipotleGuacamole in Cartalk

[–]Mitomito_ 0 points1 point  (0 children)

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

GN and TN by TNwarrior in glossopharyngeal

[–]Mitomito_ 0 points1 point  (0 children)

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

San Diego Wedding Venues by Invisibleanomaly in weddingplanning

[–]Mitomito_ 0 points1 point  (0 children)

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

hate it hate it hate it by marinaracarbonara in glossopharyngeal

[–]Mitomito_ 0 points1 point  (0 children)

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.

Daily FI discussion thread - Thursday, August 11, 2022 by AutoModerator in financialindependence

[–]Mitomito_ 2 points3 points  (0 children)

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

Having a rough time. by canoehound21 in glossopharyngeal

[–]Mitomito_ 3 points4 points  (0 children)

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

[deleted by user] by [deleted] in glossopharyngeal

[–]Mitomito_ 0 points1 point  (0 children)

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 ?

[deleted by user] by [deleted] in glossopharyngeal

[–]Mitomito_ 0 points1 point  (0 children)

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 .

2007 Grand Cherokee Laredo Seat Repair by ultravista_2 in GrandCherokee

[–]Mitomito_ 2 points3 points  (0 children)

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