trigeminal neuralgia possibly? any advice or info..?
 

Hi, I'm new here..

I haven't been diagnosed with anything as of yet and i'm so frustrated with going through whatever it is and trying to make sense of it all. I find the doctors of no help and waiting lists are so long.. here's my story i'd appreciate any advice or info..

Where to start.. I guess over 2 years ago is when things started getting quite intense.. all in all.. I have major pain and headaches consistently for over 3 weeks now, the frontal, maxillary sinus, a dull and sharp pain right across the eye brow around to the temple, and ears and cheeks. It can sometimes come from the back of my head around the ears..

It can feel like a pressure. Also slightly higher on the forehead if you went directly up from the end of eyebrow, my tears have stung me so badly for years, my vision has deteriorated from 20/20 to i'm not sure what but very dramatically and have astigmatism of the right eye.. my balance is gone, vertigo, if turn head too fast etc. (its better if turn whole body almost) i have been getting bad ear aches, a humming noise in my head, people saying i'm talking too loud or too quiet, i have a stuffy feeling in ears, also in the face like i've been punched around the maxillary area..

Another major point is that i cant be out in the air/cold for a few seconds before my ears start to hurt and glands feel like their going up.. even if have a shower and wash my hair my ears get sensitive, i feel like i'm getting a cold so easily.. its way too sensitive

I have TMJ symptoms, both sides of jaw click, my bite is a slightly off, i'm getting confused lately, poor concentration and also find it hard to walk/coordinate sometimes.. i have to think about it. I have a swimming pulsing/swaying sensation too.

My bottom 2 wisdom teeth have erupted but top 2 havent and are at a bad angle so wont come out regardless i dont think (thought i'd mention teeth in case, also need to finish a root canal) also my gums above my top teeth have this horrible feeling especially after eating something hot or cold.

Basically i'm feeling so rotten and hopeless and docs just say its the reminence of a flu i had in Dec but its been ongoing for years and really gotten a hold on me more so recently - since i had the flu..

Not sure if i left anything out but really hope to hear back from someone with any info or advice.. apologies for being scatty with info

Thanks

Chantelle

Someone will be along soon
 

Hey, I am no expert on this topic, but have suffered with atypical TN for about 10 yrs now and was originally diagnosed with sinus/ear infections for years. Finally went to Ear, nose, throat specialist and had my head scanned. There was no sign of any infection or blockage. At this point, I was sent to a Neuro and I guess by process of elimination they determined I had ATN. So far, my episodes are sporadic - sometimes only once a month, sometimes 3 -4 days straight. Usually last 4-8 hours. My pain is centered in my right ear and the immediate area surrounding it. Very painful to the touch, a constant hot, boring pain with the ice pick jabs in between. Can hardly move any part of my body without extreme pain - esp. my head or to talk. Heat helps my pain more than anything. I take 200 mg (this is a very low dose) extended release Tegretol every day as a preventive measure.

This forum is a wonderful source of information - and the most compassionate and helpful members anywhere on the internet. Go back to the first posts for this topic and read all of the sticky notes and you will find a lot of useful information there while you are waiting for someone to reply.

I'm so sorry you are suffering like you do, and so hope you get relief soon. Your symptoms sound a little different from what I have read on here, but please see a Neurologist as soon as possilble!

Rhonda

Hi ch , We want to welcome you here to neurotalks t.n. forum tho sorry it is for this type of pain.
you mentioned your eyes and your sight being affected so perhaps you may want to post this in the O.N . (Occipital Neuralgia) forum also here is the link...
http://neurotalk.psychcentral.com/thread139769.html
many of the things you described do sound like t.n. ie... the pressure sensitivity to hot and cold , the face pain etc.. all sound like a type of t.n. to me.

I AM NOT A DOCTOR OR A PRO in the least bit of way , so it would be best to get in to see a neuro or pain doctor if at all possible.
I do know sinus infection can cause t.n. as the infection if not treated and taken care of can travel from the sinus to the trig and other nerves in the face and head. I think having the flu and still feeling this a couple months later does not seem right. I for sure would find an different doc then the one you have been seeing ..a neuro if you can . you need a second opinion and better answers then this is left over from a flu... and a remedy to all the issues you are dealing with. I am sorry you feel rotten and hopeless :grouphug: but all of us have been or are feeling much like you that is why this place is a comfort ..WE ALL UNDERSTAND AND GET IT.
I would not go route of a dentist and have a bunch of teeth work done unless the dentist can show with x rays and such the need to pull or have teeth work done. MANY have had lots and lots of dental work done in hope of fixing t.n. pain only to find none of it was necessary and the work made the t n pain worse .
there are plenty of options for dealing with t.n. and o.n. pain ... nerve blocks work, botox injections many kinds of meds .


for starters cover your head, ears when you go outside that will lessen the triggers that wake up the pain monster. maybe just soaking your hair and wash that way instead of a shower that blasting water on you or try those caps where you dont have to even use water to wash your hair. my elderly mom used them before she passed away. allot of hospitals use/have them
please take things day by day look for another doctor a neuro if possible and dont give up hope.. hope is why we are all here hope is what we try to give each other every day and HOPE IS out there !!! sometimes you have to tell the doctors and not just let the doctors tell you and then push you aside you have to roar and be the squeaky wheel. if this is all left over from the flu then DO SOMETHING cus it is NOT going away its gaining control and you are the Doc so either help or send me to a professional that can. that is what I would be saying. :hug::hug: i am really sorry you are dealing with all this. please let us here know how we can help or any ??? you may have just post someone will reply. and know that all of us have you in our positive thoughts and prayers. Hope you keep us informed on how you are doing and how things go. your our new sister now :grouphug:
low pain wishes and giant hope for a remedy or answers for you!!
PEACE
BMW

Hi Bassetcase and BMW :)

Thanks to both of you for your reply. I really appreciate it. It is true with the doctors and i think part of it is that when i say my head, eyes, ears, maxillary/frontal sinus etc.. is wrong with me they just fob it off as me being over worried, but its consistent and aggressive.. they keep recommending a nasal spray, its not gonna do any good.. also the doc said ears, eyes and sinuses are NOT connected and its not related to each other etc.. frustrating..

I'm going to give it a little more time, i got a referral letter sent to a public hospital to see an ENT specialist but god only knows how long i'll have to wait for an appointment. If i get no relief in the next coming weeks at all i'm going to just go into A & E and wait to be seen no matter how many hours that may take.. whatever is going on isn't right or the reminence of a flu..

Back in 05 i actually had an MRI as i was showing all the symptoms of MS but nothing was found at that point..

Also another thing i have is also a nasal drainage too.. i dont have a blocked nose but have the drainage.. Today is awful with pains above my teeth and the gums.. it all feels sore and tightness spreading the upper jaw, across the cheeks, and right across the forehead and eyebrows.. with stabbing pains in the ears.. absolutely horrible..

In regards to dentists not too many dentists want to deal with me because my lower teeth actually sit on the main nerve that runs along the lower jaw instead of being a few mm above.. years ago i got all my amalgam fillings removed too and white ones in their place..

Hopefully this will be my year to get back into living again :) i'm 26 and the past few years have made me take a step out of things including work.

I'm so glad to have found this site and you guys, really appreciate the support

Chantelle :D

WHAT????? Your doctor told you that your ears your eyes and your nose are not connected??? I am sorry but I think the doc is wrong and please someone come correct me if I am ! but when one gets a cold a sinus infection ..your nose is affected your ears can also be affected as well as throat and eyes...that is why i believe they are CONNECTED. That is why I think your doc is wrong.but I am NOT a doctor I could be the one who is wrong but I DO NOT think so. I do think you need to keep on path to seeing another doctor..
can I ask what is A&E ..the emergency room????
stick with us we will help you as much as we can and hopefully you will get answers and your pains in control and some of your life back to normal.
:grouphug:
PEACE
BMW

Hi

Yeah, thats exactly what they said.. today i was out and had an awful spell.. along with pain can it cause dizziness? i felt like i was going to hit the ground.. i was so out of it.. sharp pains in the eyes, forehead, ears, jaw, cheeks you name it.. by A & E i meant accident and emergency, like casualty.. i think many of the symptoms i have are similar to TMJ also.. i just hope its not anything more sinister

Chantelle

As far as I know most time dizzy is from medications like a side affect when on meds . Being dizzy isnt a t.n. symptom in most of the people I have talked with neither is eye sight decreasing .... A few thing you mentioned do seem like t.n. but others dont .
I would try to get apt with neuro and have request to have a current MRI done it has been what 6 years since your last one...2005 ??
hope your weekend has been going well for you.
Low pain and positive energy to you. :hug:
PEACE
BMW

I went back to a GP and told them i wanted a referral letter, thats to be sent off but not sure how long it will take.. it wont cost me anything thankfully through the public system over here but it could take quite a while meaning months or even over a year, i'll wait and see.. but as i mentioned i might just go to A and E and try get seen to then

Thanks for all your support :D

Chantelle

Chantelle,
I am a newbie today on this site as last week I was diagnosed with MS and still learning just what I am dealing with. Some great and comforting info on this site and I hope to contribute.
Last 3 or 4 years I had similar pains - it was center of sinus area to left ear and would come and go. Heat would trigger some of the time - my dr said sinus issues - so ate tons of meds with little help. I have fought allergies all my life so thought it made sense. Then the balance got so bad I would stumble and was miserable with face pain. My dr said I should see a shrink - huh, he thought I was faking! So, I changed Dr's and within 30 days new Dr ran a B12 test - came back I had very low levels that can cause a deadly version called Pernicious Anemia - I started shots and withing 2 weeks ( 1x a week ) my symptoms had just about vanished...
Now, got along good most of summer and last 2 months many other symptoms have surfaced which has led to MS diagnosis. However the face pain has been very minimal so I would check out the B12 test - simple low cost blood test and you might just get lucky as low B12 can cause symptoms very similar to MS and can cause permanent Neuro dmg...
There is a very good book called "Could it be B12" written by a California nurse - well worth the read...
Good Luck!
Randy

If you look at an anotomical drawing of the trigeminal nerve, it branches out all through the nose - everywhere - my nose is one of the most sensitive parts of my condition. Any type of eyewear is unbearable. Regarding the astigmatism, I doubt that it is related. Many people have it. But I have to side with BMW - that statement is absolutely wrong.
Lily

Hi

Thanks guys for your reply. I managed to get an appointment for an MRI scan anyway as i have many MS symptoms also.

Just say i wash my hair and go outside i seem to get headcold symptoms, headaches, earaches, glands go up etc.. is that all part of it? like i have short hair and i got it cut the other day and its hit me again with vengence..

Do you know if anyone else has ever had all this just from washing their hair or going out into a breeze or for a walk?

Many Thanks

Chantelle

Hi

Apologies for the delay.

Wow.. your going through an awful lot like i am along with the docs thinking i'm just a worrier and making it up or causing these symptoms to manifest.. i have been told to see a counseller too.. its frustrating

I finally got an appointment for an MRI which will be on the 20th of April. I will take your advice and get B12 checked next time i get tests done.. i'm due to get more done as i have high bilirubin. I do eat quite well and take vitamins but i guess it all depends on how the body absorbs etc.

I find that if i wash my hair or go for a walk or there is a breeze etc the symptoms come back with a bang.. its horrible.. earaches, glands go up headache, generally sensitivity also heat tends to affect me in a different way, its all so difficult. I'm wrecked the following day after doing something small the day before.. feel out of it, unbalanced, confused, severe fatigue, i do have many MS symptoms so we'll see what the scan reveals. I also seem to have muscular pain in the neck.. have you ever mooved or stretched and get a sudden like shock of electricity almost travel through your head, its agony.

Hope to hear back from you, how are you doing lately? and apologies for the delay

Chantelle

Hi Lily

Apologies for the delay. Along with your nose being sensitive what other symptoms and triggers do you have? I'd be very interested to hear all about it.. Its so frustrating that the air or showering etc causes my sypmtoms to immediately flare up.. MRI scan on April 20th so hopefully that will explain a few things but again so many docs write it off and think im just a worrier because what i'm experiencing but its all connected. Frustrating

Hope to hear back from you

Kind Regards

Chantelle

B12 thread
 

Check out this thread for more info on B12:

http://neurotalk.psychcentral.com/thread85103.html

TN symptoms
 

Chantelle: With TN, you have electrical shocking, sometimes you can't even touch a hair on your head, eyebrow, etc., brush teeth, eat, hardly ever smile, other pains that shoot in your face, the pains are indescribable almost. I was cured of TN after 15 years of one of the worst cases, but misdiagnosed in the beginning of my illness with TMJ. This happens often.

Dental work was when my pain started, but I do not believe it caused the illness. If you haven't had any pains such as electrical pain, brushing your hair, washing your face, smiling, etc., you sound like someone who has an illness other than TN. Trust me, I know where you are coming from. It is hard to find a doctor who identifies with you without thinking you are crazy and do not let anyone try to convince you that you are crazy.

Can you eat anything sour? Sour things trigger TN in some cases. With my TN, the cold wind made my face pain and shocking worse, however, I never had ear pain, but others might say different. I have heard of ear pain.

Please do not give up on looking for a good TMJ Dentist. Dental work can cause many problems, also. Nerve damage.

You seem to be describing somethiing different than TN pain. I had TN severely and because I had never heard of it, I was misdiagnosed as having TMJ. This is why I am suggesting TMJ problems. I had TN for years and was given a miracle by surgery and am now pain free.

Isn't it possible to have a mild form of TN which may get worse as time goes by or remain the same?

Hi guys

Yesterday i had a consultation with a neurologist.. not much news in regards to TN but first things first i guess, from all my other symptoms she thought it sounded like Vestibular Dysfunction, i will be starting to go to a Physio Therapist at some point to help with it, also i ned to get a few blood tests and she wants to check the B12 levels.. and i am on a waiting list for an MRI which is in 6 months just to rule out something more sinister.

I looked up Vestibular Dysfunction on vestibular.org and wow it describes everything i'm going through barr the electric shocks and headaches, trigger points etc.. but baby steps, this is progress that i'm now being taken seriously and not just told its stress.. so hopefully regarless i'm on te road to getting some relief :)

Definitely going to keep you all posted but also if anyone has any info or advice on Vestibular Dysfunction/Migraines please let me know :)

Thanks Everyone

Chantelle