I have TN. How can I help with home remedies?
Posted , 6 users are following.
Okay so I am a 14 year old who is going through her GCSEs at school. Since I was 7 years old I have been having problems with my ears but it wasn't until I was 11-12 that it actually started developing into something more. So the doctors kept telling me I had an ear infection. So every month for 7 months I was told I had an ear infection every single month. And it got out of control. I was on amoxicillin for half of my life in 2016. So my doctor started to think more of it and sent me to the hospital where it was determined nothing was wrong with my ears. As I kept getting the ear pain they told me to ring back the hospital for a second opinion, which the doctor said in fact he doesn't think I have ever had an ear infection and it must be something else. He told me to book a dentist appointment and he made me an appointment with my GP so I could get a third opinion. My dentist asked me to keep a pain diary, which really helped me as I could see what ear it was mostly in and what time of the day it was most commen. In the end my dentist said it was nothing wrong with my jaw, or my teeth and she sent me home. When I went to see my GP he suggested what no other doctor had before....an MRI scan. So he booked an appointment for me to go to the hospital, where I had a blood test and she did an examination. She has now booked me for an MRI scan which is next Wednesday. The only thing is I won't find out my results until June.So the big question is... how can I cope in school with this awful condition? Should I tell a teacher about it? How can I cope when I physically cannot move in class? How can I get through my mock exams when I spend half of my time in pain? I have so many questions. It is just hard to get through school with this awful condition. I hate it. It is absolutely awful. And especially to a person who is in school and needs to consontrate on studying....
1 like, 23 replies
cathleen38205 lucy26108
Posted
I'm 57 and have been experiencing it for about 4 years. Urgh!
Do you ever had no pain moments? I at least do.
lucy26108 cathleen38205
Posted
paula76255 lucy26108
Posted
Hi Lucy
I am so sorry you have this awful condition, and at such a young age too! I think your parents should speak with the school as they can take into account any health issues and notify the examination board (I'm sure this info is correct). Re home remedies I've tried practically everything and can say nothing has really helped. I know it sounds like torture but I have found chewing gum helps me but it is painful to start with. Good luck with the MRI scan and exams, hopefully your dr/neurologist will get you sorted out.
Paulax
lucy26108 paula76255
Posted
Thankyou, I am going to ask my mum to ring up the school to tell them. I have tried everything too, nothing works. It's just a pain as I am going through my GCSEs but also having to think about this 24/7. Because the pain just comes on at the most unexpected times🙁
paula76255 lucy26108
Posted
Good luck with the school, I hope they will be understanding of this condition. Maybe give them some info on it printed off the Internet or a letter from your GP? TN U.K. have lots of advice and leaflets explaining medication and possible procedures etc, maybe contact them?
That's the trouble with TN, it just launches across your face as and when it pleases so talking, eating etc at times is impossible. There's lots of advice on this and other forums if you need help or just to vent. We're all in the same boat and happy to listen!
Paula x
lucy26108 paula76255
Posted
Yeah, Thankyou. I've been in pain all day with it. But luckily it's school holidays so am not back until next week. I will speak to my school about it when I go back. Thankyou x
michael64483 lucy26108
Posted
I am 65 & had 4 operations for TN. If you have Classical TN your pain will surface in 1 or 2 of 3 areas. If it's V1 part of the nerve your pain should be in forehead and
around eyes. May get headaches. If it's V2 part of nerve pain should be centered
mid cheek to nose area. If it's V3 (that's me) pain is in lower jaw to lips & tongue.
In all cases everything "tics" back to your ear area. You need Tegretol ASAP & MRI needs to be read IMMEDIATELY. Not sure what country you're in. Im in USA & I pushed issue to get meds years ago as I was absolutely certain what I had.
It may be difficult to get schools to cut you any slack for your illness, unless you
can find a counselor/teacher who will read the symptons of Trigeminal Neuralgia.
A 72 hour Fentanyl Pain patch may help some, but nothing beats Tegretol. Don't let them talk you info Trileptal instead of Tegretol. Gabapentin helps some, mainly I think it takes the edge off is about all. Best of Luck.
lucy26108 michael64483
Posted
michael64483 lucy26108
Posted
cathleen38205 lucy26108
Posted
Hi again, Well I'm happy to hear you have some days that are pain free.
I do have that too and then there are the months that go by without any sign of it. As far as home remedies which you ask for.. I don't take prescription medications at this point, Once in awhile I may take an advil just to see if it does anything since it can be inflamation causing the issue. The medications they suggest have bad long term side effects. There are a couple things I have found work for me. They may sound wierd, but they do work for me as I said. Clenching your teeth can cause problems so I never let my teeth rest together. It takes some discipline but worth it. Also, I make sure there is no pressure built up in my ears. Example would be the pressure you get when you are flying in an air plane or going to higher altitudes. Again, sounds crazy but it works. Now i'll tell you why I started with the keeping my ears clear of pressure. There was a time about a year and a half ago. My face, teeth, gums, ear hurt for about 9 months. Thats when I finally broke down and went to the doctor. They ordered an MRi. I went. 1 week after the MRI I was in a car as a passenger and all of a sudden, my ear popped, like in an airplane, or big hill, what ever but it popped. I couldn't believe it but it did not hurt for a whole year. Now here we are again, and it's back, but feeling a little different, almost a little more dulled. I attribute that to the fact that I'm doing what I'm doing. There's another home remedy I'm doing now but I'll touch on that later. I'm going to give it a little time and see if I start feeling more relief. Again no drugs. All in all, the MRI is very important for you to have because they need to rule out other potential causes.
lucy26108 cathleen38205
Posted
I have tried everything to calm it down... my parents don't understand me. At all
michael64483 cathleen38205
Posted
I won't fly or drive into mountains as ears full of pressure can cause pain to hit, though most of time it doesn't. If I have had recent pain, I won't brush my teeth for about a month after last pain. I use mouthwash. When my pain comes out of remission it can get completely incapacitating in a week or so. If I can get in remission - it may stay that way for a year or more. My pain is usually all or nothing. Having tegretol ALWAYS ready from the moment of that 1st "tic" can help it immensely from bursting into machine gun like electrocution
paula76255 lucy26108
Posted
Hi Lucy
Maybe you should show your parents the conversations you've had on this forum? TN is horrendous for those of us that suffer from it, although to the outside world we look fine. A broken leg would be a different matter as people can see what's wrong. Please get an MRI asap and see a neurologist so you and your parents can go through different options. I hope you can find help really soon.
Paula x
lucy26108 michael64483
Posted
Unfortunately I have to brush my teeth as I cannot use mouthwash because I have very senstive teeth🤐
lucy26108 paula76255
Posted
Thankyou, I have an MRI on Wednesday but will not get to find out results until 22nd of June unless it is something serious.It's hard to tell my parents now when my ears are bad because I will get the same response "just wait for the hospital to deal with it" or "well I can't do anything can I". At school it gets so bad that I don't even consontrate in lessons. My levels are rocketing down, below my target. I was a grade 6 in maths. Now I am a grade 4 because I just cannot concentrate it gets so bad. The school cannot send me home for an 'ear ache' they just tell me to take paracetamol and get back to my lessons. It's getting worse.Last Wednesday until last Saturday was horrendous. I had awful facial pain throughout those 4 days. Luckily it was half term so I was not at school. I feel it makes me feel a little better talking to people who had/have this condition so Thankyou so much xx