Dieting with Obstacles - But I don't want an incureable disease! TMI




giselley
01-27-2010, 12:08 PM
If it's not one thing it's another. The moment I'm starting to save a little money and get on my feet, is the moment I find I have something "wrong" physically. And it is HORRIBLE! They are getting near to diognosing me with something called Trigeminal Neuralgia. Some fun TN facts: 1 in about 15,000 people have it. It is called "the Suicide Disease" because the pain is so horrid and unstopable that after a while you want to kill yourself. It is treated with anti-convulsants and depression pills and massive doses of pain killers. It renders some victims totally unemployable and house-bound. It gets worse and worse. There's "brain surgery" for those who can afford it (unfortunately, I can't).

Background: I thought I had an ear ache because I work in a factory, and am surrounded by loud noises at work. I went to the low-cost clinic and the nurse told me my ear was okay and said it was a dental problem. The next day, I went and saw their dentist thinking that I might get a tooth pulled. She checked my teeth and said they were perfect. I have massively strong teeth. She is calling in a pathologist, and then they will do MRIs-- which I can't afford either-- to see if the cause of the TN is a BRAIN TUMOR, or an ANURISM!!! :dizzy: Obviously I don't even want to hear these words.

I've felt the pain before. It is like ice-cream brain freeze about 100 times a day. Sometimes it starts because of a cause, but most of the time it just hits you.

The doctor put me on a highly narcotic pill so I can sleep at night. (needless to say I actually did get a good night sleep), and I am on Tylenol extra strength.

Oh-- one good side effect: You usually lose a massive amount of weight-- why? It's too painful to eat. What a terrible way to diet. My life is starting to feel like a Stephan King novel.

The main thing I am worried about is because I am single and 50 that no one will take care of me if I should be unable to work-- I know I am projecting, and catastrophising, but right now I am studying to be a paralegal, and I need to get that (well paid) job to pay off the school loan and then buy some kind of little house for my dismal sounding old age. I was hoping to at least be able to work and make "decent money" for once, for at least 10 years.

If anyone knows of this disorder, or knows of better cures than opiates and brain surgery, (or kniows that it is not as bad as it sounds) please post.

:(


Violet73
01-27-2010, 12:35 PM
hey giselley....so sorry that you are going through this :hug: I was a neurology nurse for 6 years so I am familiar with this. Also, from a personal point of view they thought I had it also. I actually have rheumatoid arthritis and the inflammation was affecting my TMJ joint making it hurt like nerve pain. Antiinflammatories have helped me tremendously! Have they tried this first just to make sure you dont have TMJ disorder? I would have shooting pains on that side of my face also. If it is TN then there are a number of meds to try before ever considering surgery or injections. Neurontin, Trileptal, Tegretol, Lyrica, etc. most of these are seizure meds but they help with nerve pain. If none of the meds work then some neurosurgeons will do an injection into the nerve of glycerin or another med to help ease the pain. Then, if that doesn't work then the gammaknife surgery is usually the next step. I would first consider TMJ cause it can cause bad ear, jaw, and face pain. It can be worse on one side than the other too. I hope you get some relief soon!

thinnerbyjuly
01-27-2010, 12:38 PM
Awww big hugs! My best buddy has the same thing. It took quite a while but they found a good combo of neurotin (spelling?) and another antiinflamitory drug that help her out tons. She also at the advise of her chiro takes extra b12 and omega 3. It was really horrible for her at first but her life is very normal now. Hang in there!


giselley
01-27-2010, 12:51 PM
Well my jaw has never popped-- I don't know too much about TMJ, but I don't think it is the same as TN. I know the same nerve-set is involved though. Last month I had this and thought it was the same earache/toothache combo-- which I found it was not. It subsided for a while then came back full strength. Hoping it goes away for a while. Meanwhile I am supposed to write my observations on it for the pathologist.

natamars
01-27-2010, 12:52 PM
I am not familar with TN, but I have intercostal neuralgia(also called costochondritis), which causes pain in my chest(took a while to stop thinking I was having a heart attack every time the pain struck) and ribs. Nerve pain is in general difficult to treat, but there are medications and other things that help. Lately I have been feeling pretty good, but I do flare from time to time. Weather and humidity seem to trigger. Here is a list of what has helped me - you may be able to tell I got a little annoyed with Western medicine and sought some alternate methods:

Cymbalta
ice
heating pad
Ben-Gay(really!)
Capzasin
Acupuncture
Yoga
Rolfing(intense massage)
Breathing exercises
Relaxation CD's

Please keep us posted. You are in my thoughts.

Sskar
01-27-2010, 01:56 PM
If you do have TN, there has been SO MUCH advancement in the management of pain plus options for surgical and other more "aggressive" treatments that I really want to give you encouragement. You will not commit suicide. Your pain can be controlled. BUT you do need to see a good neurologist (and maybe neurosurgeon) who is up to date on the latest options for treatment(s) and get your pain under control immediately.

I'm not trying to minimize your concerns at all, but there are so many more therapies available now. Seeing a pain doctor will be a key part of your care. All this assuming that you have TN!

Violet73
01-27-2010, 02:00 PM
giselley....my jaw rarely popped either but I had inflammation in the joint. When it first started I told the doc that it felt like a toothache and earache at the same time. I'm just saying it is worth asking about TMJ. With TN just simply touching the face can bring on severe pain....also brushing the teeth or a cold breeze. Do you have pain with any of these? Have you seen a neurologist? they are best in treating the TN. :hugs:

giselley
01-28-2010, 12:46 AM
giselley....my jaw rarely popped either but I had inflammation in the joint. When it first started I told the doc that it felt like a toothache and earache at the same time. I'm just saying it is worth asking about TMJ. With TN just simply touching the face can bring on severe pain....also brushing the teeth or a cold breeze. Do you have pain with any of these? Have you seen a neurologist? they are best in treating the TN. :hugs:

The pain comes on with light, loud noises, hot or cold food in my mouth, pressure on my teeth (but not brushing) but it is not so bad that just touching my face hurts. Mostly it comes and goes when it wants and can be anywhere in one side of my face, but mostly in the lower and upper jaw bone. I don't have insurance, so real doctors are out of the question.

srmb60
01-28-2010, 12:55 AM
How are your sinuses? Has anyone suggested a decongestant?

lottie63
02-01-2010, 10:06 PM
a friend of mine has this.

I'm sorry to hear.....

ronni62
02-04-2010, 09:36 AM
giselley-sorry to hear about your troubles. I know how scary it is to be facing life with an incurable illness. You need to talk to Purpleorc who visits in the Physical Challenges thread. She also has TN and seems to do quite well. I know she'll have some insight for you. My thoughts and prayers are with you:hug:.

Sammyann
02-04-2010, 12:04 PM
I'm so sorry your dealing with this. I've heard some people get relief form TN from Upper Cervicle Chiropractic care.