Trigeminal Neuralgia Again


“Trigeminal Neuralgia (TN), tic douloureux (also known as prosopalgia, the Suicide Disease or Fothergill’s disease) is a neuropathic disorder characterized by episodes of intense pain in the face, originating from the trigeminal nerve. One, two, or all three branches of the nerve may be affected. It is, “one of the most painful conditions known to humans, yet remains an enigma to many health professionals.”

 

This pain may be felt in the ear, eye, lips, nose, scalp, forehead, cheeks, teeth, and/or jaw and side of the face; some patients also experience pain in their left index finger. Trigeminal neuralgia (TN) is not easily controlled and there is no cure. It is estimated that 1 in 15,000 people suffer from trigeminal neuralgia, although the actual figure may be significantly higher due to frequent misdiagnosis. In a majority of cases, TN symptoms begin appearing after the age of 50, although there have been cases with patients being as young as three years of age. It is more common in females than males.”  Wikipedia

 

No. This isn’t a journalistic article about Trigeminal Neuralgia (TM). Not that I’m a journalist either. I just wanted to present you with a decent definition and understanding of yet another condition of which I suffer.

 

Those of you that don’t know me or know me well enough I have suffered TM on and off for almost 10 years. I was officially diagnosed 4 years ago. I used to do telemarketing for a living. Not only did I do the world’s most hated job I loved it and was the best. Then the TM hit me in the ear first. I thought it was massive earaches or an ear infection and of course never went to a doctor to confirm it. I eventually quit telemarketing as a result. I thought it was burn out So the pain went away for years.

 

It started to come back in 2005. Every day it got a little worse. The pain was the worst pain known to Rich. The shooting pain through the side of my face was excruciating. I kept popping any pain reliever I could find. I found this powdered aspirin that you put under your tongue and kept eating it. Nothing was taking the pain away. I couldn’t stand still. One night I went out side for a walk in my pajamas to try and walk it off. The police stopped me because I looked like a crazy man in his pajamas pacing the streets.

 

I couldn’t take it anymore and drove off to the emergency room. They took me in pretty fast but it was 4 or 5 am. The Doctor diagnosed me with TM that morning and gave me a prescription for Percocet and told me to see my family doctor. I sped off to the nearest all night pharmacy and waited. I grabbed the prescription and practically ate the pills. They finally kicked in around 6 am. My girlfriend got up at 7 and I told her. She feared for me taking the pain pills and this was the first of many fights about it. I was over 14 years soer at the time I took the pills as directed.

 

My family Doctor prescribed an anti-seizure medication and more pain killers. I took them as directed and spent the next couple of years taking both as directed. The TM came and went then came and went again. It’s unpredictable. Some people suffer every day and sometimes a person can go 10 -20 years or the rest of their lives without pain. Not me.

 

This went on and off until finally the line was unclear as to whether I had relapsed or not in 2008. I was also on meds for my other conditions and I was a walking zombie for a bit. My thinking was screwed up and I made the relapse official in 2008 by drinking. I lost my 16 years sober and came right back. I withdrew from the meds and haven’t had any TM pain to the extreme since October 2008. That is until today.

 

I was hoping that it would never come back. I ran out of my anti-seizure medication the other day and forgot to refill it. I started feeling it this afternoon and I was freaking. When I grabbed the pill bottle I noticed that I had no refills left. So I called my Doctor and asked the nurse to have him call in prescription. She said he would. The pain started getting worse and I was debating calling him back to get pain pills. I was afraid I might end up going to the hospital if I didn’t. I can’t afford that.  I called a bunch of my recovering friends for advice on it and no one was around. I finally got some one to answer and I explained my situation. He said I should get them from the Doctor and take them as prescribed. I went to call for the pain pills and the office was closed. I called the pharmacy to see if my prescription was ready. The doctor never called it in. The pain kept coming and going all afternoon and night. I took. Alieve then went to the drug store and got Excedrin migraine. It kept coming back.

 

I found a pill I had that is for migraines I got as a sample last year when I was having recurring headaches. I took over the counter back pain pills. I’m so loaded up on over the counter medications I’m dizzy and the pain comes and it goes. Just when I get distracted it comes back. I can’t think about anything but the pain then my anxiety flairs up and it makes it worse. Staying completely still seems to work for a bit.

 

Hopefully, I can wait until tomorrow and call the Doctor. I want to avoid the hospital.

 

The irony of it all is that I am supposed to start a new job this coming Tuesday and it’s phone collections. I can use the other ear but it still could be triggered. I’m going to work anyway you look at it. I’m going to deal with the pain one minute at a time. I know people that have I much worse than I do with TM and I admire their perseverance. They fight and try to live life one day and one moment at a time.

19 Responses to Trigeminal Neuralgia Again

  1. xmemore says:

    Wow, very interesting. What a brave man you are. It amazes me how good you are at “self help”. There are not many people that could do what you do to overcome; very brave too.

    I think I can sorta relate. A month or so ago, I woke up with an ear ache. I went along figuring it would get better but as the day went on it got worse. I thought I would roll over with the pain and got in to see the dr. thinking I had this massive ear infection then he said, “your ears are fine, no fluid or anything”. He then mentioned TMJ, several years ago I had similar discomfort and TMJ was mentioned but I had completely forgotten about it.

    I was lucky, took some motrin and was better the next day. This dr’s wife is a dr too and I see her predominately and several months ago she gave me some xanax and I took one before bed which might have relieved the stress and I didn’t grit my teeth or whatever I do to bring that horrible pain on.

    I haven’t had that any more and it’s not exactly what you suffer from but it was nearly debilitating.

    Take care man. See you soon. I have lots to say to you lately but no time to get on and say it, but I will when I have time.

    • richhillenjr says:

      I have been “self helping” myself most of my life. early on I did mixed with self medicating. I’m pretty self absorbed and therefore self aware.

      I look forward to your comments. Your perspective always helps and interests me.

      • The girl next door says:

        Hi Rich, long time no see, but I have had you on my mind quite often.

        Lots of great advice here from people who obviously have first hand knowledge of your suffering.

        Before their comments and guidance I thought I had a tid bit of info for you, but now realize it won’t help. I will share it with you tho.

        Many years ago I had an accident, a brain injury and some cosmetic surgergy on my leg and forehead. At the place of surgery on my forehead I itch like the dickens. Sometimes I have scratched until I have scratched my skin off, etc. It’s maddening. (I go to a neurologist too) but at this time I went to the dermatologist and he put me on Amitryptaline (sp?) He said that there was nothing wrong with the skin to make it itch but that my brain was sending signals to the skin telling the skin it itched, which can be stronger signals than if you really had an itch. So, I was thinking maybe something like that would help you. Now with all this great advice you have here, my advice is insigificant. Now the other side of that coin on your health covereage. I say do your best to hold your pride and take government assisted health care assistance so that you can see a neurologist.

        Take care and know that I think of you often. hug hug

      • richhillenjr says:

        Thank you darling. I miss hearing from you. I’m going to have to do something about it. One day at a time.

  2. mary says:

    I’ve a Friend..
    May be He have the same thing like you.
    I read your post.. and I see some similar things…
    I don’t know where He is now..and I am sad..very very deeply sad for Him..
    I love him, and I want to help Him..I want to be near Him to help him..
    He don’t know, how much, I love him……

  3. Sheri Neumoyer says:

    I just read your last two posts and the tears are falling. I’d really like to talk to you. This disease is more awful than anyone who hasn’t experienced it can ever come close to imagining.
    I know I can help you in some way and I’d really like too.
    First, I’m gonna have to smack your hand, because you have TN, not TM. I have ATN, (atypical, type 2). I’m gonna wait for you to call me, but if you take too long, I’m gonna have to screw up this anti-social thing you have going on and call you.
    Big Hugs,
    Sheri

  4. Jim Richmond says:

    Hi Rich,
    I’ve had TN for around 8 years now. Its a real pig. Last year was my worst year ever. I’m fortunate in some repects that I’m now retired so work/career is not an issue. I find it helps reading other people’s experiences and I sometimes learn something. If you can be bothered, I’ve left my blog link. It started as a diary of my retirement……you know the rest. I think you need to go back to entry 14/15 or even further.
    Best wishes,
    Jim

  5. Sah Hill says:

    I really think you need to see a neurologist instead of your primary care doctor. Good luck!

  6. barbara says:

    Dear all who are suffering from TN. I am seeing a neurologist but it makes no difference, they don’t know how to cure this killer anyway.
    I thought at first it was due to Lyme disease, I used to suffer from that for more than 10 years before the right diagnosis was found. Now I am in a lot of exteme pains from my jaw, ear, eye, skull, in fact the whole of my left head half. It usually takes a few weeks of terrible pains (sleeping not possible so it weakens my total condition) and then it can stay away for months. I too take all pain killers available but none is effective. The first few days are the worst, after 2 weeks it slowly gets less severe, like today. I wish you all a solution to this inhuman suffering. love from Barbara

    • Sheri Neumoyer says:

      Hi Barbara, I’ve had Atypical Trigeminal Neuralgia for 7 years. I’m wondering what meds you are taking. You probably know that most neurologist don’t know how to treat TN. Are you taking any anti-seizure meds or anything to help you sleep?
      -Sheri

      • barbara says:

        Dear Sheri, thanks for your reply. The neurologist once gave me anti-epileptics but it made me psychotic, now I get morfine tablets. I don´t get anything to make me sleep, so I can´t sleep or I sleep only an hour every now and then. I frequently take sumatriptan, which is against migraine. And paracetamol coffeine about 3000-6000mg a day.
        Next I have to take pills to keep my heart beat in the proper rythm, but this is still due to my former Lyme carditis.
        How do you cope? Wat medication do you take? All the best, Barbara

  7. laura says:

    I was just diagnosed with trigeminal neuralgia. I have never felt pain like this in my life. I have been a fitness instuctor and dance teacher for years and than suddenly this unbearable pain. The weird thing is that my jaw line and inside my mouth I have swelling on and off. I have had blood work, cat scan, facial ultra sound and an MRI. The dentists I have seen say that there is nothing and the doctor can’t figure it out. I see a neurologist next week. Has anyone else out there experienced swelling as well as the trigeminal neuralgia pain?

    • richhillenjr says:

      I am fortunate in a way that mine is atypical. It is still the worst pain I’ve ever felt but I go into remission sometimes. I have never experienced swelling. I’ve been to a couple of neurologists and didn’t follow through because I didn’t see the point and my insurance ran out. Ask Sheri who posted a comment about the swelling.

  8. Sheri Neumoyer says:

    Hi Barbara, Sorry, I can be a little slow with replies, all do to the TN in various ways. But, I would really like to help you if I can. I’m going to write some things about your medication and other medications that could be helpful and other treatments for TN shortly. Breifly, not sleeping will make TN much worse and your doc should be addressing that first. There are anti-epileptics that are completely different in structure than what is commonly used for TN that can help. Also, synthetic opiates almost always work better on nerve pain and there are all sorts of other meds out there that your doctor hasn’t thought of using. Have you had any procedures or surgeries? These neurologists with little or no knowledge of TN, drive me insane.
    Hang in there, -Sheri

    • barbara says:

      Thank you Sheri for your reply and your support. I never had any surgery but I had an MRI scan last summer which gave no information. The neurologist only told me that I probably imagine the pains, because it only happens to women above 50 years of age. I told him I´m 51, but even then he thinks these extreme horrible pains only exist in my imagination.

      • Sheri Neumoyer says:

        Barbara, Whew… I’m gonna hold back all the things I want to say about your quack neurologist!! I got it when I was 30. The reason he thinks that only women over 50 get it is because it’s more common in older people. As you age the vein or arterial or whatever is compressing the nerve breaks down the myelin sheath around the nerve which causes the symptoms of TN.
        Unfortunately, doctor’s accuse TN patients of imagining the pain, then we don’t get proper treatment, and then we commit suicide, and that’s where TN got it’s knick-name! When I first got it, I was accused of being crazy and wanting drugs. Sorry… but I’m SO angry at your doctor.
        My advice to you is to go to a pain medicine center, that’s what I’ve been doing for the last 6 years. Also, I go to the neurosurgeon who invented Microvascular Decompression Surgery.
        You can write to me if you’d like, and I’ll help you as much as I can. You have pain all the time, right?
        lilystcyr_rhps@yahoo.com

  9. Sheri Neumoyer says:

    Hi Laura, With TN, in almost every case, nothing shows up on a CT-scan or MRI. You can see the nerve, but whatever is compressing it is just too small. The cause of mine wasn’t seen until a neurosurgeon opened my head. Where is your swelling exactly? Hopefully your neurologist is knowledgeable when it comes to treating TN. But, don’t let anyone tell you there isn’t anything wrong. Since the doctors can’t physically see the problem, a TN patient is sometimes considered “crazy” or in search or drugs. Sad but true in a lot of cases.
    -Sheri

    Rich, I haven’t heard from you. Let me now how you’re doing… and CALL ALLSUP! I want my money! *laughs*

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