Wednesday, September 23, 2015

Blogging has its benefits

If you asked me if there's been any change in the past year, I wouldn't really immediately say yes. But the unexpected benefit of recording all of this suffering is that, by looking back at past posts, I am reminded how much worse the pain used to be than it is now.

This can work for you, too.

Progress in nerve healing is so slow it's virtually unrecognizable; it sure doesn't feel like I'm getting better. But every time I read something from a year or two ago, I realize that, although I still have pain, it used to be worse. 

Yes my tongue still burns, but not nearly like did. I can't promise you will recover 100% (I haven't)... but comparatively speaking, things are worlds better, and that is comforting because it means there's still room for improvement!

Looking in the rear view mirror can suddenly bring things into view. When the pain is  overwhelming, and you feel lost and hopeless, write it down. Nobody understands this pain and it is invisible to others, so you get no sympathy; some people even hint that you're making it all up.

Keep sharing your thoughts with others here on the blog: even if all you do is post and then kind of forget about it, when you look back at it months and years from now, you'll be able to measure subtle improvement.

Get involved, and get better soon. :)

Tuesday, June 30, 2015

Welcome to the Jungle

Welcome to the bizarre, uncharted territory we now find ourselves in. If you're new to this injury, it usually goes something like this:

Step 1 - you have some kind of incident or a dental procedure - it may be as simple as a cavity being filled, or as complex as oral surgery or implant placement.

Step 2 - something goes wrong....the normal numbness following a visit to the dentist doesn't fade away in an hour or two. Instead, you are left with lingering pain, burning tongue, pins & needles feeling, numbness, dry mouth, and possibly a myriad of other symptoms such as headaches, sore throat, earache, and more...all on the same side of your face that the dental work occurred.

Step 3 - you struggle to determine what's wrong. You visit all manner of doctors and dental practitioners. You spend hours on Google. Nobody understands, because "you look fine". Even the medical community looks at you with bewilderment or disbelief that you have anything more than anxiety.

Step 4 - if you're lucky, you heal within a day or two, a week or two, or within the first 90 days. Congratulations! If you are one of the 20% or so who doesn't heal within that time frame, you are looking at an indeterminate amount of healing time, where you try everything on God's green earth to make it better.

While I don't have a cure, I do have personal experience which may help you navigate the jungle, so if you haven't reviewed some of my earlier posts, and you have some free time, I suggest you start with those from 2010 and work forward.

A doctor said to me recently that nerves can take 5-10 years to heal, and that it's promising that I'm still improving after all this time. My biggest struggle now is getting pain medication prescriptions filled. It is crazy what is going on. I am a degreed professional on the exact same, low dose of pain reliever every month, and following doctor's orders to the letter, yet I am treated like a drug-seeking addict every time I visit the pharmacy.

The ordeal of finding the right doctor(s), then finding a pharmacy (note: avoid Walgreens and CVS), then playing by the DEA's rules which are ever changing while you simply try to stay on top of your game while living your life of chronic pain, is the name of the game these days.

I have signed petitions and am preparing a letter to the editor of Time magazine in rebuttal to their recent article demonizing prescription drug use for chronic pain sufferers. Makes it sound like every pain patient turns into a heroin addict buying drugs off the street (largely because, by cutting off the supply of opioids as the DEA has done, many people have turned to heroin because it is easier and cheaper to find than prescription meds that are closely regulated). 
Time magazine requires you to pay to read the article, but there is an article about the cover story here-

Take a look...and PLEASE take a moment to write a letter to the editor of Time magazine in response.


President John F. Kennedy had chronic pain resulting from an old military injury, yet he managed to hold the highest office in the land, thanks to prescription meds - yet if he were around today, might not be able to get his rx for Vicodin filled.

What a mess this "war on drugs" is...they are focused on the wrong thing, and take a blanket approach that is ridiculous. It's like putting out a candle with a fire hose, flooding the entire house.

Are any of you experiencing the same judgey pharmacy clerks and prescription refusal where you live? How are you coping with the pain? I have tried numerous anti-seizure and anti-depressant drugs that turned me into a zombie. I can't live a productive life like that. So I slosh through the new jungle of painkilling drugs, as a chronic pain patient just trying to do the right thing.

Thursday, February 5, 2015

How Laser May Help Reduce Facial Pain - My Experience

Several of our Facebook friends have asked about laser for facial pain, and one of my blog readers recommended Carmen Care Laser Therapy in South Florida, specifically, so I paid them a visit (THANK YOU!).  This is not a sponsored ad, but an unbiased review - the good, the bad, and the ugly.

I have undergone 4 treatments in the past 7 days. What it feels like: it's just a warm feeling on the skin, as she moves the laser wand around the head, mouth, and neck. Treatments take about 20 minutes each, and a minimum of 14 are recommended to see any significant improvement.

So far, my pain has actually slightly increased, but I'm told this is normal; as the nerves begin the process of self-repair, it is not unusual to feel worse before feeling better. In fact, I should expect to continue improving for several weeks after we complete the treatments.

My tongue and ear now feel more burning and tingling, much like they did about 2 years ago, which is little comfort, but I have been promised that things will improve.

Leslie Carmen is the owner of Carmen Care. She trained in laser treatments after her daughter came down with Trigeminal Neuralgia and they traveled to a laser treatment center in North Carolina, because there was none nearby.

After 14 laser treatments, her daughter fully recovered. FULLY. RECOVERED. There is no residual pain. The typical treatments for TN are drugs and surgery - but after laser therapy, she required none of these. Carmen has also used laser to help repair bad knees which were supposed to require orthopedic surgery, as well as back pain, arthritis, and other aches. Laser therapy was cleared by the FDA for use in the United States in 2003.

My own injury is now in its 5th year. I feel that I have plateaued in my recovery, so I am skeptical, yet also excited, about the possibility of finding relief with laser therapy.

Lasers are classified by their power output; Carmen uses Class IV, which is anything over 500 milliwatts/0.5 watts. (For comparison, Class 3a, a maximum of 5 milliwatts of power is what is used for a standard laser pointer.) Unfortunately, most American insurance companies, like Aetna, still consider laser therapy such as this "investigational" and refuse to cover it, so plan on paying out of pocket.

Carmen realized she was tremendously overcharged when her daughter needed laser therapy, so she charges a fraction of that amount in her own practice, to make it more affordable for more pain suffererers. If it works, it will be worth it, since there is no known cure for the lingering pain that occurs with approximately 15% of lingual nerve injuries.

Here is a list of conditions laser can be used for:

Spinal Stenosis and Sciatica Pain - Herniated Discs - Cervical Pain
Muscle Spasms - Myofascial Pain - Fibromyalgia
TMJ Syndrome - Migraine Headache - Cervicogenic Headache
Neuropathic Pain - Trigeminal Neuralgia - Facial Pain
Arthritis - ALL Joint Pain - Knee Pain - Hip Pain - Ankle Pain
Bursitis - Tendonitis - Carpal Tunnel - Plantar Fasciitis

I will be reporting further as treatments continue over the coming week. I am scheduled for 3 more visits. And then...we'll see...

Have you had laser treatments for facial or any other kind of pain? What were your results? How much did it cost? Would you recommend to others?