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Old 12-02-2020, 08:41 PM #1
kinjo28 kinjo28 is offline
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Hi all. I’ve just been diagnosed with TN. Trying to gather information on easing the symptoms. From what I’ve read already my case seems pretty common with others here. I first thought I had a sinus infection. I went to my gp and he prescribed me antibiotics. I woke up at 3am and felt like someone was digging my molar out from the inside with a hot ice pick. Pain moved from my teeth to my sinus. All on the left side of my face. I hopped on google after the pain subsided. I saw that it could be my teeth so I got an appointment that day. I got X-rays . They didn’t see anything and I was told that the cleaning would be 800. They said it was most likely a sinus infection. I went back home that night I gargled salt water and holy crap i triggered that pain like no other. I got it ! It has to be my teeth. Next day I was in the dentist chair. I was all good and numbed up . In the middle of the cleaning I got another pain attack. The dentist was literally jabbing all my teeth saying it can’t be your teeth. Man I didn’t know what was going on. In fact after the cleaning I went to my car and broke down in tears. Which isn’t a thing Ive done since I was a little kid. I told my dr the same thing I’m telling you now and he told me about TN. I still can’t say it right. This was about two weeks ago. Feels like one long *** day. Have no clues what caused it . I was in a bad car wreck when I was in my 20s , I been kicked in the head a lot from sparring and tournaments before that. New herewho knows. I’ve been given tegrotol idk how long it takes to work. My pains been pretty mild since that dentist office. Had a few bad flare ups. Shits changed my life . Looking forward to reading everyone’s posts thanks for reading.


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Old 12-06-2020, 11:37 PM #2
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Hi Kinjo28! I'm fairly new here too, I haven't posted my situation because it's really long. Mine started a year ago. I've been on medical leave since March. I know how aggravating it is when your teeth hurt like heck & everybody says it's not your teeth. I was told TN also, then not TN, it's a muscle, then it's a tendon, but it's not your teeth. I cry several times a day from pain. I hope this gets resolved for you.
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kinjo28 (12-08-2020)
Old 12-07-2020, 12:06 PM #3
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kinjo28 (12-08-2020)
Old 07-01-2021, 12:58 PM #4
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I was wondering if anyone has ever experienced a complete cessation of f the TH activity while suffering from the flu or flu related symptoms .

At this very moment I am just about getting over the flu that has lasted 10 days and all this time I can rub the lower part of the left side of my face without exciting the maxillary branch of the trigeminal nerve.

I experienced the same result in December 2020 about the time I was coerced into the COVID ward of Royal Darwin Hospital Australia when I went to the hospital for a lung function test.I mentioned the ''deadened'' branch of the trigeminal nerve to the ER doctors on duty but they were not interested

I was diagnosed about 7 years ago with TN and for a number of years was largelyunaware I had TN until about 3 years ago I suffered multiple firings daily for about a month that prevented me from chewing any solid food. One positive result was -I lost 6kg.
Since then I am aware of the maxillary branch firing just below the surface of the skin .Periodically it will fire if I rub my left eye ,rub my left jaw or yawn but only for about 5 secs.
I am 83
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Lara (07-04-2021)
Old 07-05-2021, 12:04 AM #5
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Hi dookie,
Welcome to the NeuroTalk Support Groups.

I can't help you with your Trigeminal Neuralgia at all because I haven't experienced it and only know about it mainly from people who have posted here over the years.

I hope someone will pop by who has some answers for you.

That's a very interesting response that you had when you had influenza. Maybe something to do with your immune response I guess. I did read online about people who had TN who also had auto-immune disorders. I think it can be a symptom of auto-immune disorders but that is fairly rare.

I am curious, however, as to why you were "coerced" into the Royal Darwin Hospital's Covid ward. I hope you were not placed in there when you were Covid free. Were you a traveller?

keep safe.
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Old 07-20-2021, 10:06 PM #6
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Thanks for replying ,Laura. I did feel I had an infection .That may have been the reason I was escorted to the Covid ward at RDH-but only for a few hours while I had a lung x-ray taken, without having to leave the bed. No,I refused a covid test as I'm a covid skeptic and following my near death experience (with ARDS) sometime after being injected with booster shots of three vaccines before travelling to Thailand in 2003,I'm now vaccine averse. Very much so.
Today,I feel, the dreaded TN has returned as I am just about over another respiratory infection.It appears so far that TN in very localised on the upper jaw.
When I was in the Covid ward I mentioned and demontrated, to two senior doctors that I no longer had TN .They were not interested.
One has to adjust ,and keep on breathing .Keep walking as my father said when I asked him how did he manage to live to 99.
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Old 07-21-2021, 09:07 AM #7
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Old 07-27-2021, 03:34 AM #8
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Quote:
Originally Posted by kinjo28 View Post
Hi all. I’ve just been diagnosed with TN. Trying to gather information on easing the symptoms. From what I’ve read already my case seems pretty common with others here. I first thought I had a sinus infection. I went to my gp and he prescribed me antibiotics. I woke up at 3am and felt like someone was digging my molar out from the inside with a hot ice pick. Pain moved from my teeth to my sinus. All on the left side of my face. I hopped on google after the pain subsided. I saw that it could be my teeth so I got an appointment that day. I got X-rays . They didn’t see anything and I was told that the cleaning would be 800. They said it was most likely a sinus infection. I went back home that night I gargled salt water and holy crap i triggered that pain like no other. I got it ! It has to be my teeth. Next day I was in the dentist chair. I was all good and numbed up . In the middle of the cleaning I got another pain attack. The dentist was literally jabbing all my teeth saying it can’t be your teeth. Man I didn’t know what was going on. In fact after the cleaning I went to my car and broke down in tears. Which isn’t a thing Ive done since I was a little kid. I told my dr the same thing I’m telling you now and he told me about TN. I still can’t say it right. This was about two weeks ago. Feels like one long *** day. Have no clues what caused it . I was in a bad car wreck when I was in my 20s , I been kicked in the head a lot from sparring and tournaments before that. New herewho knows. I’ve been given tegrotol idk how long it takes to work. My pains been pretty mild since that dentist office. Had a few bad flare ups. Shits changed my life . Looking forward to reading everyone’s posts thanks for reading.


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Hello,
On the note of relieving some of them symptoms… the only thing that helped me before I under went MVD surgery 2 weeks ago was steadily increasing doses of gabapentin. I did opt to do the MVD surgery because I am younger (29) with low risk for surgical issues. My cerebral artery was pressing against the maxillary branch of the Trigeminal nerve. My worst pain was right at the bottom of my nose on the right side. Right where the dip is where ur nose meets ur cheek. Felt like someone was taking a hot ice pick and driving it into my face. Went through a bunch of crap from different drs and the ER saying “tooth issues” and “sinus issues” ect. Finally an Ear Nose and Throat dr sent me for an MRI. Then sent me to a neurosurgeon. There are different options for attempting to lessen the pain. But from all the research I have done there is no “cure”. If you are a good candidate for the MVD surgery then it can give you most relief for usually 10-20 years. Most other options the longest I saw were 3 years. Definitely see what option would be best for you. So far I have been out of work for 2 months and thankfully my job allows me to do that because I will be out for about another month recovering. The mvd isn’t without its own pain and challenges. I won’t lie I’ve had a couple days that the headache rallies up there with the pain of a TN attack. And you def need someone at home to help u minimally the first week home.
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Old 09-29-2021, 07:56 PM #9
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Quote:
Originally Posted by dookie View Post
Thanks for replying ,Laura. I did feel I had an infection .That may have been the reason I was escorted to the Covid ward at RDH-but only for a few hours while I had a lung x-ray taken, without having to leave the bed. No,I refused a covid test as I'm a covid skeptic and following my near death experience (with ARDS) sometime after being injected with booster shots of three vaccines before travelling to Thailand in 2003,I'm now vaccine averse. Very much so.
Today,I feel, the dreaded TN has returned as I am just about over another respiratory infection.It appears so far that TN in very localised on the upper jaw.
When I was in the Covid ward I mentioned and demontrated, to two senior doctors that I no longer had TN .They were not interested.
One has to adjust ,and keep on breathing .Keep walking as my father said when I asked him how did he manage to live to 99.
This is an update on my experience with respiratory infections and the abatement of TN.
I have just finished overcoming bouts -I think three-of respiratory infections during the last 8 weeks.While infected I experienced no TN .This is the third time it has happened in a little more than two years.I have mentioned this observation to two GP's -one expressed interest,the other no interest at all.
Now one week post-infection no TN at all.
From past experience no time to celebrate as the nasty TN is probably lurking just below the surface.
During the last four weeks I have been ingesting one to two cloves of garlic a day as I have become intolerant of antibiotics.I can't see any connection between the intake of garlic and '' apparent'' disappearance of TN.
Keep healthy.
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Old 10-23-2021, 07:27 PM #10
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Quote:
Originally Posted by dookie View Post
This is an update on my experience with respiratory infections and the abatement of TN.
I have just finished overcoming bouts -I think three-of respiratory infections during the last 8 weeks.While infected I experienced no TN .This is the third time it has happened in a little more than two years.I have mentioned this observation to two GP's -one expressed interest,the other no interest at all.
Now one week post-infection no TN at all.
From past experience no time to celebrate as the nasty TN is probably lurking just below the surface.
During the last four weeks I have been ingesting one to two cloves of garlic a day as I have become intolerant of antibiotics.I can't see any connection between the intake of garlic and '' apparent'' disappearance of TN.
Keep healthy.
Predictably, once the respiratory problems were over ,TN has now returned.I just have hope that I have only the sporadic fleeting pain on the left side below eye and near the nose though I know at any time I will suffer a bout of intense pain thankfully lasting no more than a few seconds that seem like minutes.
What with the sacro-iliac joint disfunction (every hour of the day without painkillers) ,COPD,and 6-12 monthly check- ups for lung cancer this is an exciting and interesting time of my life with a good computer ,fair-moderate internet connection with the world of knowledge at my fingertips.
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