Tired

General General TN & GPN (Old Site)
1

I was told to repost on the main page. I don't know if this is it....

I am new here. My problems started in November. I kept being told I had chronic ear infections. Something I have never had. This turned into vertigo and tinnitus. I ended up getting a balance test. It was normal. Then I started having pain with my upper left bicuspid and in part of my face. They did a root canal on this tooth- (and I think I probably didn't even need it)- and BAM-- my world as I knew it ended. I already have fibro and bipolar disorder that is called "treatment resistant"-- then the left side of my face EXPLODED. The root canal kept hurting. I saw 2 dentists- who said it was stable- fine. I saw an endodontist- He said- it is fine, stable. Give it a month to calm down. sigh. The pain became so unbearable that I ended up in a ER about 2 hours from where I live. They don't know about the bipolar nor fibro. Doctors who see this- think the pain cannot be as bad as you tell them. Also, they have access to all of your ER records etc... So, the doctor there said I had TN. She ordered a CT of my head and left ear. It was normal. I had a very extensive eye exam- b/c my left eye hurts. It was normal- I did need new glasses but I can't wear them. They hurt the area behind my ear and the root canal still hurts. My jaw bone hurts- throbs. The whole left side of my face throbs. Sometimes, my inner ear feels as if it is going to explode as well. The pain runs into the muscle of my neck. I no longer think clearly.

My family doctor placed me on Lyrica which has kicked my depression into over drive. I can't take Gabapentin nor Tegretol. I can't take NSAIDS. Most of the anti-convulsant drugs- I can't take. They use these for bipolar disorder also, and the side effects - are usually ones I can't manage. The other problem is they either induce mania or the doctor cannot get them high enough in dosage - so they would be therapeutic. I haven't seen one drug yet used to treat this on FB or in reading, that I can take. I am about to stop the Lyrica b/c truly-- it is pushing me under. It is a catch 22- . What benefit is the Lyrica- if it is making so bloody depressed??

I don't know if this TN has changed your quality of life. As I said, I am new to this. I just know since it all started, I can't think clearly- I want to knock out that root canal w/ an ice skate- and I'm in pain. I don't see a neurologist until June. If she thinks this is fibro or psychosomatic - I am screwed. I don't know what I will do. Surgery scares me- I have had enough of these. Are there any other options?? I just want PART of my life back.... I don't even leave my house anymore.

My pain is always there- I can't say for certain if the wind makes it worse. I read this often. I do know when the ear pain was so bad I always wore ear muffs- even if it wasn't cold outside. I also wonder about the root canal and the teeth around it. They say it's okay. It surely doesn't feel okay.

I am very tired of all of this. Sitting here crying now. I am so tired.

beekeeper.

2

Hi beekeeper,

Welcome to the group and I am sorry you need to be here.

I think many of us would say that our quality of life has changed since we got TN?

It can be a long journey to find the best option to resolve the pain, some find a combination of medications that work and there are surgical options available.
Will your family doctor try to get you an earlier appointment to neuro, it is so hard to wait when you are in pain. It’s also a good idea to make sure the neuro has experience in TN!

Sending you a big healing hug.
Trish
PS. Do you really keep bees? I adore bees, they are so amazing.

3

Hi Beekeeper, welcome. You sound like how so many of us have felt! You are NOT alone! Please take it one day at a time and go easy on yourself and know that things will calm down for you. It is really scary, but there are things that will help so try not to let yourself get too discouraged (most of us have been there too) and when you do feel overwhelmed or upset or scared please let people know because there are people here who understand and care and know a whole lot about this condition and how to live life with it. Take care and hang in there, we do care and we do understand. BTW if you are taking some meds such as Lyrica make sure that you taper down your dose if the directions tell you to.

4

*hugs* I'm glad you've come here. I've been just where you are; so tired and sad and just hopeless that TN has ruined my life. But, coming here and having a place to vent with people who really do understand has helped a lot.

I don't have any advice about treatment options, as i'm still new to TN myself (just diagnosed in june 2012)..so i'm still wading through treatment options too...but as mentioned before, take it one day at a time and don't push yourself beyond what you can do. One thing that HAS helped me a lot is doing a lot of research and gathering all the info i can about TN so that when i talk to medical professionals i can show that i do know what i'm talking about and i can better filter what they tell me. One of the medicines i'm on now is because i asked about it myself.

Just remember, many of us here know how hard this is...and we're here to listen and help where we can with support or information...or just a *hug*

Wishing you peace and some relief..

~Mistee

5

No. I don't keep bees. :) It is a reference to poem written by Sylvia Plath. It would be nice to keep them, I think though.



Trish said:

Hi beekeeper,

Welcome to the group and I am sorry you need to be here.

I think many of us would say that our quality of life has changed since we got TN?

It can be a long journey to find the best option to resolve the pain, some find a combination of medications that work and there are surgical options available.
Will your family doctor try to get you an earlier appointment to neuro, it is so hard to wait when you are in pain. It's also a good idea to make sure the neuro has experience in TN!

Sending you a big healing hug.
Trish
PS. Do you really keep bees? I adore bees, they are so amazing.
6

Thank you for the replies. Today has been a really bad day. The pain was - different than before. In some different areas-- part of my mouth. I guess it is from the fibro + the pain, but my skin stays mottled - kind of pinkish-purple often. I do know that this thing is causing a lot of frustration in my home. I can't often do what I need to do. I lay down a lot.... I have had my fair share of surgeries and don't want one again... not another. I don't see the neuro until JUNE. Feels like forever. This whole thing is just wretched.

7

# 1 if you are MORE depressed on Lyrica - you should ask dr or pharmacist how to take it down a notch on the dose now!! And then see if you need to get off totally.

Here are some suggestions for neurologist ( who should have already TN patients or you are wasting time--just call them and ask before you go in June)... or your GP if you can start sooner -- I've made a document from this website for 2 years on Meds That Work for Some People - Sometimes a combination--as I am sure that you know -- the meds below were not created for TN - just happen to have a side effect that helps TN! I took out all the anti-seizure meds:

. Amytriptiline -- is not an anti-seizure. It is a try-cyclical antidepressant that it's also known for its pain control. The main side effect felt by most people is that it may produce dry mouth.

Baclofen (usually muscle relaxer)

Nortriptyline, which is a relative of amitriptyline.

Ultram/Tramadol--narcotic-like pain reliever

Klonopin - anti anxiety

In ER: IV dilaudid + toradol + benadryl (synergistic to enhance effect of other two)

Medical Canibis

Compound Pharmacy can make something prescription topical : 10% Ketamine, 10% Lidocaine

Prescription Lidocaine patches/cream/mouthwash

Lortab = acetaminophen and hydrocodone

Tylenol 3 = acetaminophen and codine

What part of the world are you in???

Google: Images: Atypical face pain and then trigeminal neuralgia -- see which illustrations fit you closest - sometimes a combo--show family/friends/doctor

Many people here have what you describe with mouth/eye / glasses

Copy and Paste all info into a document you gleen from here -- and decide what you are going to ask your neurologist now that YOU are getting educated on this disease. The more that you learn, the faster that you learn, you can get better sooner --They just don't have all the answers because we are 12 in 100,000 and only a little paragraph in all their medical training...

Lastly -- Don't sign up for any nerve damaging procedures unless you come back here and ask around --- they can very well take away treatment choices down the road that you might like to try.

Please take care of your mood condition - talk / meds / therapy - whatever you do -- my son is same.

Keep Posting!