Is there hope ?

[helpmeplease995]

In 2002 I had thought I was having very bad toothaches.Went to my Dentist,told him that I think I have to have a root canal on to teeth on the upper right side of my jaw.He took ex-rays and said that my teeth are fine . i convinced him to pull them.The pain that I thought was from my teeth that I had pulled....was'nt.At that time (2002)after having my 2 teeth , pulled I was still having what I thought was the worst toothaches in the same place that the teeth were.Now it was'nt every day.Only about 1 or 2 a month.Buy 2004 it was happening almost every day.Only on the right side of my face, it was sickning.....the worst pain that I have ever been in......I know pain , I've brooken my jaw, spiral fractured my tibia and fibia in my left leg , stiches , staples , tattoos...you name it. There is nothing that I have experienced in my forty years on this planet that can descibe the pain that I am in do to TN.One  night the pain started and went on for about 9 hours, my wife finally convinced me to go to the ER.I told (well my wife had to talk for me because I was to buisy rubbing my face on the wall of the ER)My right nostral got plugged than ran with what I described as a clear thick mucus.It fely as if someone was trying to poke my right eye out from the inside of my head,Then it would go to my right temple then my forehead  then to my jaw then my nose....so on and so on.OH I cant forget to mention that my heart rate was off the chart and my BP was also.They told me to calm down or I WILL STROKE OUT OR HAVE A HARTATTACK.They kept me the I.C.U. for a week on morphine and dilodid.....told me I have cluster migranes and perscribed me fioricet and sent me on my way.Well now I am diagnosed with TN , went thru 6 neuroligist befor my diagnosis for TN and count less trips to every ER in every hospital in Tampa........treated like a junky and told that all I want was narcotics!!Lost my job because when I was finally diagnosed with TN my neurolagist put me on triliptal, perkicets and valium.I was a liability for the company I was working for(I built cell phone towers).So I had to go on public assistence whitch ment wellfare insurence.I thought I was treated like a broke **** dog befor ...I hadnt seen anything yet!!!! To make this long story a little bit shorter, Iam contomplating MVD.I know see a shrink and a theripist for anxiety and depression.Iam afraid to be 15 minutes away from my house or shuold I say prison cell, in fear if I have a bad episode in a public place that I will be committed to a mental institute!!!!My out look on life has took a turn for the worst . Not to mention what it has done to my family...wife and two young boys!!My wellfare neuroligist wil not perscribe me the pain meds that I feel I need.My quality life is **** ..... I am fedup with the medical profession...... if another Dr. looks at me like Iam crazy I feel its my duty to give then a little sample head pain of thier own.Is there hope ?Does it get better?Is ther a wellfare DR. out there that knows how to spell Trigeminal Neuralgia let alone treat it and give the respect and dignity that every human being deserves?I mean come on!!!!!! web sites from Cedarcianied to Johnhopkins states in the very first paragraph "Trigeminal Neuralgia is the worst known pain that the body produces none to man " so I think that sufferers of TN should have the option of pain meds befor they get pushed into brain surgery by a wellfare Dr. I hope whoever reads this takes it seriously I know my spelling is bad but my meds make my brain fart.And can people with TN quallify for Disability?  

[painterchic]

First of all know that you are NOT alone, NOT crazy and NOT deserving of the treatment you have received. This disease can rob you of so much, some people more than others, sounds like you have had a very rough time of it. Don't give up. I was going to recommend that website to you, but the very wise Nancy99 beat me to it. Thank you Nancy, you are a gift to this forum.
And FLGirl is correct in that freaking out, stress, all of it, makes it WORSE. I yada-yada'd that theory until a family situation took me from zero to 100 in ten seconds flat as far as stress goes, and INSTANTLY the attack started and took me days to settle down to a manageable level. If you can't avoid it, (and we cannot always control things), maybe you can get something to have on hand to reduce your anxiety or stress and thus reduce the pain.
I hope you find the answers you are looking for, a doctor with wisdom and empathy that treats you with the respect you deserve and you can start to live your life again. Check out my post with the video also, sharing that with family and friends will help them understand a little also. Good luck.

[nancy99n]

Here's a link to the TNA support website.  It's a page that has links to many different subjects -- including how to get medicine if you can't afford it, as well as how to apply for disability or appeal a disability denial, along with a lot of other helpful subjects.

http://www.fpa-support.org/links/index.html

[FLGIRL34]

I am so sorry to hear about your suffering. In November of '09 I started having horrific pain in the right side of my face. It feels exactly the way an abscessed tooth feels. I went to the ER and was told it was dental. The doctor looked at me for only a few seconds and diagnosed me, then took off. He prescribed me the very pill that I had just told his nurse makes me deathly ill. I know what you mean about these dumb doctors.

Since the first episode, I have suffered off and on with pain shooting from one side to the other in my face. I have spent many nights crying like a baby. I am a strong woman who has been through a lot of pain too. I've had my stomach cut open, stomach muscle cut, 32 stitches, and tons of pain. That's only one experience. I don't have enough time to tell it all. I am just saying that I am like you. I have seen my share of pain. I'm not a crier either, so if I'm crying-it's BAD.

I was prescribed Diclofenac, but it made me sick. I've tried Gabapentin, but it made me depressed and tired. The only pain pill I could stand was Ibuprofen, but it is bad for the stomach. I don't know what to advise to anyone as far as medicine is concerned. I would, however, like to tell you that when I stopped taking the Ibuprofen because of my stomach, and started focusing on other things besides the pain, it started to go away.
Now, every time I feel a twinge of pain, I get a wet rag and hold to the spot that is trying to hurt, and I go on about my business.

Before, when I felt pain I would panic and stress out. All of a sudden after that I would be in terrible pain and heading for the pain pills. Now, I don't freak out and I stay calm and relaxed. I haven't been getting the attacks now for a couple weeks. Before, it was everyday. I honestly believe that it is the stress of worrying about the pain that causes most of the flare-ups. Just try to stay as calm as possible, and busy.

Another thing that I believe starts attacks up is laying in the bed with your head and face pressed on a pillow for too long. When people don't feel well, and especially when they are down mentally, they tend to lay around a lot. I was doing this and I ended up in terrible shape. Now that I am up moving around and staying busy all the time, I feel at least 85-90 percent better.

I'm not sure if any of this will help you. I just wanted to give you my experience to see if it could help. Good luck to you, and please never give up. There is always an answer.

P.S. You are NOT crazy. The doctors are.

[Una01]

Sorry. Some spelling mistakes. I meant I've heard of alot of people....lol

[Una01]

Hi. I'm sorry to hear that you're suffering from this horrible condition.
I have just been diagonised with TN a year ago after having a root canal. Still waiting to see a neurologist. I do believe there is hope tho. Hope is all u I have and if not, I think I'd go mad.lol
I have a young daughter and feel like the worst mother in the world somedays. I know how you feel but we can't blame ourselves. I try to do as many things possible with her on those pain free days.
I applied for disablity a month ago and they are just waiting on a report from my doctor. I've hard of slot of people who are approved but some aren't. If not I'll try to appeal it again.
Hope you find some pain releif soon.
Una

[nancy99n]

People with TN can qualify for disability.  There's a bunch of posts on the TNA website from people who have been through the process (www.endthepain.org).  I personally have not had to apply.

If you have a blood vessel/vein compressing your nerve an MVD surgery may give you a better quality of life.  Have you had a thin-slice MRI (also called "trigeminal protocol") where they saw a compression?  You will want to find a good neurosurgeon -- because successful outcomes depend on the quality and experience of the surgeon.  (And I know that may be difficult given your economic situation.)

There is hope -- it's hard when you're in such pain and dealing with such difficult situations -- but hang in there and keep fighting.