What is Neuralgia? How do I live with it?? | Chronic Illness
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- Опубликовано: 16 сен 2024
- What is it and how do we live our lives if we deal with this on a daily basis. There are many different types of neuralgia, which we'll talk about as well as my experience with neuralgia and how it affects my life.
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I’ve been dealing with a barrage of symptoms for nine months that no one seems to have an explanation for, but I’m beginning to think it just might be glossopharyngeal neuralgia. My symptoms began in May 2018 when I suffered a massive double ear infection after swimming in my aunt’s pool. The infection itself lasted almost four months and during that time, I developed what I called a “lump” on the right side of my throat. My neck there is painful to the touch, would often shoot to my tonsil or ears, and eventually caused me to lose the ability to use a straw or suck on food or liquids without triggering sharp pain. These spasms last seconds, minutes, sometimes on bad days hours of rapid throbs of sharp pain. I’ve since been tested for thyroid, laryngeal, as well as esophageal cancer, and each of these came back negative. Blood tests have ruled out lingering infections. I still have my tonsils, and I am considering having them removed just to see if the pain there goes away, but don’t want to endure that long recovery as a 27 year old. Right now, my ENT has me on a 3-week steroid therapy just to see if it’s being caused by a virus, but I’m not noticing any changes so far. The one thing about glossopharyngeal neuralgia is that it’s often treated with seizure medications. I was diagnosed with catamenial epilepsy before all this started but the oxcarbazepine therapy I’m on certainly isn’t helping. Helps the seizures marvelously, though, so I guess I can’t complain. Despite that, I am truly starting to wonder if this rare condition is the answer I’ve been searching for all these months. As a young female, I don’t exactly fit the bill for your average sufferer, but, like you said, we all have different bodies that respond to pains differently. Who knows? When I finish the steroid taper I’m on now, I plan on bringing this condition up to my doctor. Maybe my prayers for a diagnosis will be answered soon. Thanks for sharing this video!
Glad it could help! And I hope you’re able to figure out what’s going on, whether it is Glossopharyngeal neuralgia or not. I know doctors were shocked that I had Postherpetic neuralgia because I was 27 too when all this went down back in 2017 and I still suffer from it especially in the winter. They don’t know why it happens to younger people either, it seems
@@TanyatasticTalks Going to the doctor this week, so fingers crossed! The weird thing about it is when I go days without having a spasm, I start to question myself, or even wonder if I'm just imagining it. I have a lot of health issues that most doctors can't explain (the catamenial seizures took about 14 years to finally diagnose!), so each time something weird happens to me, I'm almost compelled to call myself a hypochondriac or something. The symptoms and timelines for the spasms aren't consistent, so it's frustrating. The worst of these attacks happened in October and November. Had several bad spells in December, and then in January and February I just had sporadic ones here and there. I know the doctors test you by "triggering" an attack by swabbing/numbing the back of the throat, and I'm hoping that if I'm in a remission period right now they'll still be able to get me to have one. I won't know until I see my doctor. That's weird that you were the same age as me when yours started. The thing that makes me wary about it is that all the articles you read about neuralgia make you think it's a condition exclusive to people in their 50's and 60's; that's what made me look past it in the first place when I first heard about it in October. I assumed it was too rare and I'm far too young; it just had to be something else. So, ultrasounds, barium swallows, CT scans, an endoscopy, and the like later for testing other possible conditions, here I am. If only I had brought it up then...
vixenrevitup more and more health related issues are happening to those of us in our 20s so doctors are now having to take note and if they don’t then they won’t be completely informed. Let me know how the appointment goes!! I really hope they’re able to find a lead that will help you.
@ vixenrevitup I have a youtube channel dedicated to my life with GPN and other facial neuralgias. (TN and ON) Subscribe to me if you need more info from a real person with GPN. Hope you get to feeling better.
Tanyatastic Talks Sorry it took so long to finally respond to this! A lot has changed for me as far as disease progression in the past 3-4 months! I finally saw a neurologist yesterday with over 50 years of experience. He absolutely believes I have all the earmarks of someone with a neuralgia based illness. Very likely glossopharyngeal but he wants me to go on a three month trial of generic Tegretol to see if it makes any difference in pain. He’s hesitant to do imaging on me yet simply for the fact that I have an idiopathic form. It was brought on by infection, not what is typical; most GPN patients have an artery or tumor pushing on the nerve. I told you previously about being on generic Trileptal for my epilepsy that I have had since the age of 12. It recently stopped being effective for the seizures so my PCP placed me on generic Keppra. I might have assumed Trileptal wasn’t helping then, but once it was finally out of my system, I realized it actually was! The Keppra I am on now doesn’t touch it. I thought having a few spasms a day and a few remission days was bad when I was on Trileptal; on Keppra it has skyrocketed to over 50 spasms every day with no remissions so far. The neurologist thinks that my history with Trileptal almost confirms diagnosis because it is one of the typical treatments. So he wants to add Tegretol in addition to the Keppra. Keppra to see long term if it helps my seizures because I haven’t been on it long enough to tell yet. Tegretol on trial for 3 months to see if the glossopharyngeal spasms decrease or go away. When I see him in September will determine next steps. Probably will be surgery if my disease progresses. This doctor has been in the neurological field for over 50 years; I am his very FIRST patient with GPN. And as a young female, I don’t fall under what is typical for this disease. He told me he sees trigeminal neuralgia all the time. A few occipital neuralgia patients as well, but not one person with GPN. The next three months will be interesting, to say the least!
thank you for such an informative video!
im 27 male i did an mri and i have the condition glossopharyngeal neuralgia on my left side of my throat happens from my ear and shoots down to my throat. The first time it happened i was at school i was 17 and i couldn't breathe for the first while i was in panic i didn't know what i was feeling i tried yelling for help but i couldn't not one person in the hall even noticed when the electric shock feeling ended i thought to my self wtf i thought i was gonna end up in the hospital. so i have had it for 10years it will go away for months the longest it was gone for was 1 year and i thought to my self it was gone until it happened again and it was gone again and again and again and again for different periods of time this has driven me insane untill i found out what it was i didn't leave my house for 2 weeks recently when it occurs i close my self in. throughout the years ive learned to control the pain no meds help at all when it happens in the same moment i look in the mirror my left eye gets dilated i need something to grab when this happens because of the pain no meds have helped me do you think there is something else besides surgery i can do?? or somewhere i can go i also do live in canada im still waiting to see a specialist but also dealing with this at the same time idk how many more years i can deal with it i need to get it gone away for good.
I hope you get to see that specialist soon. Are there any other specialists in your area? Even a few hours away that might be able to see you sooner? It must be really scary when it comes on. I don’t know of anything unfortunately other than some medication that works for some nerve pain but since those don’t work on you that would not work unless the specialist has other ideas. Sometimes heat works and calms the pain (it does for me with my nerve pain in my head and face) but for others cold works better. I know that’s pretty simplistic but maybe it can provide at least temporary relief when you have a flare up. I know I didn’t have pain for about a year and then this last fall it just came back with a vengeance. I really hope you get the answers and solutions you need!!
i appreciate that a lot i just seen my main doctor and it shouldn't be to long before i see my specialist again. I just got a heat pad so i am hoping that will work for me also. Yea it definitely gives me anxiety when it comes on because i don't know when its going to happen and that puts me in a different mental state because i know the pain i gotta deal with and not being able to get a meal in or even to talk yawn cough is the worst unless going thru the pain it triggers i have roughly a 30s gap of having to eat quickly before it shoots down pain again usually lasts 30 to 40s takes about 45 to an hour to finish a meal or even finish a water bottle. At this point i am even willing to fly anywhere i have to go to but i am praying my specialist will have another solution. i appreciate you for making a channel like this and i support you i have definitely learned a lot and lots of blessings from me to you.
@@TOPfighter4545 Did you meet your specialist? If so, how did it go?
Hello! I am 13 years old, and I search it up what’s that pain in your throat in one side and it said it’s glossopharyngeal neuralgia! I don’t want to have it and so young
So i recently had an ear infection but my mom just said it was nothing and recently I've gotten "flare ups" I'm not sure if its neuralgia tho .
Are you experiencing pain in your ear again?