Helppppp!

1

I am fairly new to TN...about 3 months diagnosed! I am managing the TN pain I think. I saw a neurosurgeon and he informed my based on my MRI that my sinuses were really infected..so then he ships me off to an Ear, Nose and Throat doctor for treatment. I go to him and he confirms the diagnosis of a sinuses infection but does not think it is causes the TN pain that I have. So I leave there with medicine and nasal spray and saline. Anywhoo...a few days later I develop this pain on my TN (right) side of my face that feels like my face is on fire...it feels like a slow burn that develops into a full fire. It started off lasting maybe 2-3 minutes but has since increased to lasting anywhere from 4-5 minutes. The pain is OMG horrific. It got so bad that I had to go to the er..they gave me pain medicine through an IV that stopped the pain, so now I am taking pain medication on top of 2 anti-seziure medicines and all the medicines the ENT gave me. I wanted to know if anyone else has had this issue/pain because I can not function with it. I am taking pain medicine all day trying to ward it off before it happens. Some days I go without it but anything triggers it...drinking water..brushing my teeth. I am in desperate need of relief...

LaQuisha

2

So sorry to hear what you are going through and yes, everyone on here, unfortunately knows the pain. With that said this is the best place for support and venting and for people who truly understand. To me it sounds like you need to find a neurologist or facial pain Dr. that really knows about TN, easier said than done, but we have to be our own advocates and it can take some trying, which is hard with the pain, but the right Dr can make a world of difference. I am not familiar with the Lidocaine patch but I know many find help with that and or the topicals/creams...maybe someone can chime in here with that info, sure they will. For me no pain meds work, just the anti-seizure keeps it somewhat controlled, have my days, and have had to really increase dose over the years, but for now most of the time a dull ache and burning with some stabs, but for the most part liveable, wish had none of it but have had to retool what is liveable and you will find those answers. I often say a good day is now defined by being able to brush my teeth! Be as good to yourself as you can, the pain is unreal and just hoping you can find some relief and soon. You will be in my prayers. We all know and understand the desperate feeling for help and I hope between this group and hopefully a knowledgeable Dr you will find some. Gentle hugs,

Betsy

3

So sorry LaQuisha that you are feeling this incredible pain. I know you are scared but breathe deep. I am new to TN and new to these incredible pains as well. As Betsy mentioned finding a Doctor familiar with TN experience may be difficult but worth pursuing. Because TN can only be treated and not cured I would assume until my options ran out that this new pain was not TN. Also since you were assisted by traditional pain medication this hints at it not being TN from what I know. I had an incredible burning like you described and was helped by a muscle relaxant(believe it or not). I would start keeping a health diary and note every symptom, when it occurred, and what pain level (from 1 to 10) and what medication being taken and your perceived effectiveness. Write out your questions and concerns for the doctor and if possible take someone with you. This will help you and your doctors. I know how scared you must feel. Your body is an incredible healing machine as it is dealing with sinus infections. Keep us informed as to how you are doing. Our healing thoughts are with you. Tina

4

I had always read pain meds don't work on TN and they sure didn't for me, except to knock me out! But get confused reading on the group because some say they help? Know we are all so different, and what works for some not on others. Never, luckily had a sinus infection, wonder if that can duplicate TN like pain when drinking or brushing teeth? We are her for ya, LaQuisha, hoping answers and relief come soon!

5

Thank you all for your thoughts prayers concerns encouragement and suggestions! The burning pain is something new and something the medication does not touch at all! The pain medication does not cover the TN pain I still have that shock Electric stabbing like pain even on the pain medication. Yes I am scared to death and the neurosurgeon that I’ve seen didn’t seem to be concerned at all even though he claim to specialize in the "Tic Delourax (not sure of the spelling) which I thought was the same as the TN. He seemed more concerned with pushing me off on another doctor who didn’t seem to care whether or not I had TN! I’ve only had this condition for 3 months and its only gotten worse so I can’t imagine the hell you long suffers go through! I’m in jeopardy of losing my job…I can’t talk most days…I can’t brush but one half of my mouth and can’t rinse at all! I’m barely eating or drinking and some days putting on lip gloss or lotion makes me want to cry! People call me strong because I’m able to endure but what they don’t know is I’ve wanted to give up some days but I’m yet holding on! So…I’ll continue to pray for you and you continue to pray for me!

6

Correction. …the pain medicine stops the burning pain but not the TN pain! Sorry…

7

Hi LaQuisha. I wish I could hold you in my arms darling. Now I know you want to panic and think the worse BUT I want you to grab that smart, analytic part of you, that part that will help you survive no matter what. You will survive and thrive.Grab a piece of paper- you are suffering a lot of symptoms of different things at the same time. Write down what you know.

1) you have TN and you are taking medications - write down the medications that you are taking for this. Notice in your first post you said you think you are managing that.

2) you said you had sinus and infection. Now review your medication. Research this online and see if you can ascertain if you are getting better, how long. See if any home remedies. Know your body will heal.

3) you are have a flash burning pain that is helped by pain medication. Write this down, the medication that is helping. This is an new unknown source of pain. Assume that this pain will be treatable. It is scary because it is unknown.

----------- Now my Dad said something to me that relieved me. Even though the pain was horrendous he told me THE PAIN ITSELF WAS NOT LIFE THREATENING. Many times when we feel pain we get scared because it means something is horribly wrong. In the case of TN it is like crossed wires. It is perceiving pain where there is no functional pain. For some reason this helped calm me down. Wikipedia has a great write up.

Now write down your priorities

1) You must be very careful with your pain medications. Review all the precautions on taking them!!!!

2) Food is important but the most important is your water. Especially during healing. Use a straw and tell yourself YOU MUST GET LIQUID. If you can not drink or will not drink you must go back to the ER. If all you do is drink water your body will heal the sinus infection. You can live a long time on water alone.

3) Get some Ensure or liquid food drinks and drink through straws. If this is all you can do, that is OK for a while. You can survive a long time without any other food as long as you get water. Later you can make nutritious fruit smoothies.

4) If you are feeling suicidal get help immediately. There is a number of this home page. All the different drugs you are on could be confusing you. Be especially careful with pain medications.

You insurance may have a nurse hotline. My husband has used this and they were fantastic. Also my regular family doctor was great in trying to help me resolve issues. Many times you can talk to your doctor's nurse for advice.

There is also a Doctor online service http://www.teladoc.com/ (there is a video that shows how it works) Average cost $38 and average call back time 22 minutes.

Good luck sweetheart! You will get through this. Break it down into sections and rate the individual pain so that it does not blur together. Don't let your mind rush to its worse fears. See if you can get some time off to heal. See if you can get a partner to help you navigate all the decisions. Remember we are here!! Tina

8

I’ve been on here for two years… These are your priorities as see it…



Call any one of your docs !



ASAP and get prescriptions of LIDOCAINE FACE PATCHES AND LIDOCAINE MOUTHWASH! Have them call in to your pharmacy…you don’t need appt for this…use ENT, GP, DENTIST…ANYBODY that has seen you in last 3 months.





THEN:



google trigeminal neuralgia…with the word neurologist!!

…forget about the clowns above! Find a real TN doctor.



You go to a real neurosurgeon if needed later…



You need to find the best…even if you have to drive an hour!



I’m sorry you have been treated like that…you need compassion who has MORE than a handful of patients,
CALL AROUND




Run and get this book…STRIKING BACK BY DR KEN CASEY

Learn from us and the book as much as you can,as fast as you can, the prescriptions I mentioned should be able to help you keep your job till you can get a real doctor…



Look at this and tell us if this fits…



Google images trigeminal neuralgia And



Google images atypical face pain



Do you think you have both?



We are almost here 24 /7

9

when i first went to my gp, he sent me for a head scan thinking it must be a sinus infection, not tn...they said i had a small infection so i took antibiotics and that cleared but the pain remained the same for me. i have a had a sinus infection before, and while that was horrible, it WAS NOTHING LIKE TN.

dont give up hope, your going to make it through this.

10

Tina…Kc & Mace…thank you for all the useful information! I’ve never been suicidal for any reason so I won’t start now…I have actually started a pain journal logging different times a day and what medicines I have taken (I only use the pain medication now when needed)…drinking anything is a job for me and straws make it worse but I have gotten the lidocaine mouthwash as well as orajel & the Kanka brush from blistex and using them gives me enough time to drink about 10oz of water before it wears off…so I keep something in my purse at all times! I am looking into other doctors because while the thought of sitting home getting paid sounds nice the amount I would collect wouldn’t support my doctors visits! I’m struggling but I’m still holding in & still trusting in my faith! I’ve figured that there must be a story behind my pain! Thank you all for the advice but most of all your encouragement. …it means alot!