Hi! I’m Chloe and I’m 18 years old… I’ve been diagnosed with glossopharyngeal neuralgia but at first they thought it was trigeminal…(still querying trigeminal too) I’ve read most of the posts on here and I can relate to pretty much all of them. I’ve tried numerous medications that my body hasn’t tolerated too. I’m just curious if anyone suffers with the feeling of being generally unwell? I’m constantly not 100% and having sleepless nights even when I’m not in pain… Can anyone relate??
Hi Chloe. I just feel sick, pretty well all the time! I don't know whether it's from the pain in my face or from the medications or if it's from being a chronic insomniac who hasn't had a single decent night's sleep in almost 20 years. I don't know whether it's because I've worked non stop with no holidays in 16 years. I don't know whether I'm just sick and tired of being sick and tired!!
I don't honestly know whether you can ever feel 100% when you always hurt on some level. Maybe it's too much to ask for.
Hi Chloe
Ya I get this two. I got my first bout of TN in June this year and have basically been sick since. That was followed by an abscess in my tooth, chest infection, gallbladder infection (hospitalised) another chest infection, TN flare up (hospitalised) and then strep throat infection. Literally one after the other like that. I can honestly say I have taken more antibiotics in this half of the year than in my 25 years prior. Always feel tired and run down. My glands are constantly rock hard, I think my body is fighting a serious battle. I either sleep 4 hours or 14 and either way I’m exhausted.
Saying this, I come from a long family history of auto immune disorders and have tested positive for something along those lines. They think it might be liver related so due for tests in this in the new year. Could be the reason I feel so off and have been so unwell.
Hope you get a boost soon,
Suzi
Hi chloe. Glad you found us. We also have GPN group you might want to check out at:
general feelings of being unwell are not uncommon with either condition and almost as frustrating as the pain, The problem with the fatigue is just like the Neuralgia itself NO ONE can see anything that's broken and they start to wonder. That's the great thing about these groups. The members understand. Hang in there.
Thanks so much for all your replies! I’m so glad I’ve found this group, it’s a big reassurance to know that I’m not alone and others can understand! I’ll definitely check out the GPN group too.
Thanks for your understanding
Hope you all have a lovely new year and many pain free days to come (fingers crossed!)
Chloë
Oh god you are far from alone. There is another fantastic closed group on Facebook called end trigeminal neuralgia. https://m.facebook.com/groups/184086478397607?ref=bookmarks
I highly recommend it, people from all walks of life and some fantastic advise given.
All the best for the new year to you aswell chloe and a pain free one hopefully
Suzi
Catwoman -- I can identify with you completely! Most people I know think I'm a hypochondriac. One of my bosses, who I love dearly, said to me recently, "Cindy, you have a LOT of health issues." At 50, let's see ... Migraine, something going on with my female parts (perhaps perimenopause), a pain in my upper gut that might be diet-related, a cyst on my pancreas that they found when trying to figure out why I had a pain in my upper gut, and now TN attacks that put me on the floor in my office crying uncontrollably with an ice pack on my face. My other boss thinks my health issues were emotional because I lost both my parents in a year's time. Let's add reactions to TN medications that put me in the ER ... together with a pain in my lower gut that I thought was appendicitis and put me in the ER ... Yes, I feel unwell much of the time, to the point where I don't like to talk about it anymore to friends and colleagues because they look at me like I'm a nut. So I work constantly when I feel good to stay on top of my job so I don't lose it. I don't know what the heck is going on, but I can tell you this ... I am completely SANE and ON TOP OF MY GAME. TN has tried to knock me over, but I refuse to let it!
catwoman said:
Hi Chloe. I just feel sick, pretty well all the time! I don't know whether it's from the pain in my face or from the medications or if it's from being a chronic insomniac who hasn't had a single decent night's sleep in almost 20 years. I don't know whether it's because I've worked non stop with no holidays in 16 years. I don't know whether I'm just sick and tired of being sick and tired!!
I don't honestly know whether you can ever feel 100% when you always hurt on some level. Maybe it's too much to ask for.
Unhelpful or irritated reactions from others to your plight with TN just makes it all worse. My sister told me to stop throwing it up in her face. They just don’t want to hear about it so I keep it mostly to myself. People in this group really understand and I’m glad I found a place I can vent or ask for advice in a supportive environment. You are not alone.
Thank you everyone for your replies! I’m so glad I found this group, everyone is very supportive 
I hope you all had a fantastic Christmas and I wish you a wonderful and pain free 2016! I’m due to try a third medication - pregabalin… has anyone been on this before and can tell me what it was like? my body reacted badly to carbomazapine and gabapetin so I’m a bit worried to start it.
Thanks everyone x
Hi Chloe,
If you go to the black header bar at the top of the page, click on discussions and in the search box type in pregabalin and it will bring up discussion from members about it and their experiences. Good luck!
Scott
Chloë said:
Thank you everyone for your replies! I'm so glad I found this group, everyone is very supportive :) I hope you all had a fantastic Christmas and I wish you a wonderful and pain free 2016! I'm due to try a third medication - pregabalin... has anyone been on this before and can tell me what it was like? my body reacted badly to carbomazapine and gabapetin so I'm a bit worried to start it.
Thanks everyone x
Hi Chloe,Deb here just joined this group ,yes I have a generalized feeling of not feeling well, I think it’s do to us not getting enough rest and in my case being in pain all the time ,mornings are my best time but once I get up and use glasses, talk eat breathe,anything that has to do with our face…I get migraines Daily.Sorry that you are soo young ,hope one of the meds work for you .I had a day or two without pain when i started savella,neurontin,but after a day or 2 the pain returns .Hang in there…
Thanks very much Scott, that helps a lot! All the best to you x
Hi Debra, nice to meet you! migraines are awful and I can relate a lot, I have a constant pressure in my head when the pain is there or when its disappearing into a dull ache! Thank you so much, me too! Hope 2016 brings you many pain free days x
That's been my life, all day, everyday for the better part of 20+ years.
I'm in the minority in that my issue developed when I was in my pre-teen years. Within a period of 3-5 months I began experiencing extreme facial fatigue, irritability, and general malaise. Shortly after this onset I had a "migraine" though looking back on it now it was likely something more than that as I threw up on myself en route to the doctor and felt like I was "frozen" upon arrival. It was literally like I couldn't move or think. They gave me a shot of something, I slept for 13 hours that night, and felt like a million bucks the next day. Soon after however, the malaise and irritability returned and I soon fell into a 3 month long period of insomnia. I knew I didn't feel "right" but was so tired and fatigued that I wasn't sure what was causing the insomnia or what the insomnia may have been causing. Eventually I started sleeping again but I never felt the same. I always felt tired and didn't have the level of concentration I had before. I felt "stupid" but convinced myself it was all in my head as it didn't make sense to me.
What I found out several years later was that my pain/problem was just "ON" all the time. By the time I was a sophomore in college I was feeling like crap every time I ate and developed a headache after skiing that just wouldnt' go away. After a round of failed antibiotics I decided that maybe my wisdom teeth were to blame. I had all 4 taken out and after 2 days of laying down and taking it easy, my head/face just magically relaxed. I had nasal breathing issues for years which I attributed to a deviated septum. Now I could breathe unimpeded through my nose. It literally felt like 1000 pounds was lifting off my head. Previously I would feel like I had this tunnel "vision" and would get very tense when out in the cold. Somehow that became my normal...I literally didnt' know how I should feel. It was at this time that I realized I had been dealing with something since the age of 12-13, possibly longer.
I will spare you the rest of my details, but it goes to show how much this can effect your entire body. In my case my sinuses, facial muscles, jaw and neck were effected and this caused a TMJ type chain reaction. The extra "weight" on my head made it hard to concentrate, though I didn't realize the magnitude until after my "epiphany". I literally want to rip the left side of my face off and it makes it difficult to fall asleep, stay asleep, and feel refreshed. It's been 15 years since I felt like I woke up ready to go. I honestly don't even know what it feels like anymore.
Trust me, there can be a lot of feelings of self doubt and unrest, especially with your body "failing" you. I wish you all the best.
My consultant at the pain clinic told me if your young it may go away in it’s own eventually. I like to think one day it will.
Hi Chloe.
I have glossopharyngeal neuralgia. I have managed to reduce the pain intensity/frequency by half with megadoses of Vitamin B12. I started with 1000mcg, then went to 2000, then 5000, then cut back to 2500mcg. It initially took 2 weeks to get results. You need sublingual Methylcobalamin. The type that worked best for me was Natural Factors, B12, Methylcobalamin, 5000 mcg, 60 Chewable Tablets, bought from iHerb. It should be taken just after a meal.
B12 is thought to help regenerate injured nerves as well as act as an analgesic.
Another thing you might try is acupuncture. In his talk The Tides of Neuropathic Pain, Dr Ken Casey says it works.
Good luck!
Hi Nomad,
How is your pain level now, is the B12 still helping?
Nomad said:
Hi Chloe.
I have glossopharyngeal neuralgia. I have managed to reduce the pain intensity/frequency by half with megadoses of Vitamin B12. I started with 1000mcg, then went to 2000, then 5000, then cut back to 2500mcg. It initially took 2 weeks to get results. You need sublingual Methylcobalamin. The type that worked best for me was Natural Factors, B12, Methylcobalamin, 5000 mcg, 60 Chewable Tablets, bought from iHerb. It should be taken just after a meal.
B12 is thought to help regenerate injured nerves as well as act as an analgesic.
Another thing you might try is acupuncture. In his talk The Tides of Neuropathic Pain, Dr Ken Casey says it works.
Good luck!
On the right side, the main problem was I couldn't shave/trim my upper lip without extreme pain. That has cleared up 100% (so far). On the left side it was much more painful, with stabbing attacks many times a day and also at night. I started the sublingual B12 at New Year and got a 50% reduction in pain and no attacks at night after 10 days. Then it seemed to regress. I upped the dose and after a couple more weeks I was back to a 50% reduction in pain. I reduced the dose again but after a bone-jarring 3-hour "tuk tuk" ride in Cambodia recently it regressed again. As it stands now, I'm returning to the 5000mcg dose and waiting to see what happens.
knowpain said:
Hi Nomad,
How is your pain level now, is the B12 still helping?
Nomad said:Hi Chloe.
I have glossopharyngeal neuralgia. I have managed to reduce the pain intensity/frequency by half with megadoses of Vitamin B12. I started with 1000mcg, then went to 2000, then 5000, then cut back to 2500mcg. It initially took 2 weeks to get results. You need sublingual Methylcobalamin. The type that worked best for me was Natural Factors, B12, Methylcobalamin, 5000 mcg, 60 Chewable Tablets, bought from iHerb. It should be taken just after a meal.
B12 is thought to help regenerate injured nerves as well as act as an analgesic.
Another thing you might try is acupuncture. In his talk The Tides of Neuropathic Pain, Dr Ken Casey says it works.
Good luck!
Ok, best of luck I'm glad it is helping you so far. I had tried B12 many years ago, I noticed an effect the first few days but not much after that. I will retry it and see what happens.
Nomad said:
On the right side, the main problem was I couldn't shave/trim my upper lip without extreme pain. That has cleared up 100% (so far). On the left side it was much more painful, with stabbing attacks many times a day and also at night. I started the sublingual B12 at New Year and got a 50% reduction in pain and no attacks at night after 10 days. Then it seemed to regress. I upped the dose and after a couple more weeks I was back to a 50% reduction in pain. I reduced the dose again but after a bone-jarring 3-hour "tuk tuk" ride in Cambodia recently it regressed again. As it stands now, I'm returning to the 5000mcg dose and waiting to see what happens.
knowpain said:Hi Nomad,
How is your pain level now, is the B12 still helping?
Nomad said:Hi Chloe.
I have glossopharyngeal neuralgia. I have managed to reduce the pain intensity/frequency by half with megadoses of Vitamin B12. I started with 1000mcg, then went to 2000, then 5000, then cut back to 2500mcg. It initially took 2 weeks to get results. You need sublingual Methylcobalamin. The type that worked best for me was Natural Factors, B12, Methylcobalamin, 5000 mcg, 60 Chewable Tablets, bought from iHerb. It should be taken just after a meal.
B12 is thought to help regenerate injured nerves as well as act as an analgesic.
Another thing you might try is acupuncture. In his talk The Tides of Neuropathic Pain, Dr Ken Casey says it works.
Good luck!
I can totally relate to the not feeling well. When you are afraid to eat because chewing is a trigger so you avoid alot of things you normally would scarf down, and not being able to sleep from pain.