If you love me, keep my commands.And I will ask the Father, and he will give you another advocate to help you and be with you forever— the Spirit of truth. John 14:15-17 (NIV)
I try not to be a whiner on this blog. It is supposed to be encouraging and uplifting. It seems like lately, all I have written about is my battle with M.S. So, if you are over it (like I am), I apologize for another MS related post. But, I promise, it has a happy ending so bear with me. M.S. is a very individualized disease. No two patients are alike. Some people suffer from weakness in their legs. Others from memory loss. Still others endure tremors, eye pain or blindness, lack of balance, headaches, numbness in extremities, sensitivity to cold, heat or light, digestion or swallowing difficulties, speech disorders, depression or anxiety. Don’t read the websites when you are newly diagnosed. It is a crap shoot which ones will emerge in a person with MS. One of the symptoms I have is facial pain or trigeminal neuralgia. It comes on at random times, but always starts with tingling around my mouth and progresses to my cheek and eye. Only on the right side of my face. Lately, it has progressed from the numbness and tingling to pain, like my face is on fire. When it first started almost eighteen months ago, it was before my diagnosis. I made the mistake of looking it up on the Internet where it was nicknamed, “The Suicide Disease”. Great. It seems that some people have such terrible pain that is uncontrollable that they consider suicide to be rid of it. Many of the websites are quick to explain that with modern medicine it is controllable. So, why even share that nickname, then? Just saying. So, anyway, my trigeminal neuralgia has gotten much worse in the last few months. I don’t notice it during the day if I stay busy (except for the eye twitching, now that drives me bonkers), but at night, when I first go to bed with nothing to occupy my mind, it seems worse. A few months ago, my doctor prescribed a medication for nerve pain in my legs. However, I prefer to push through things like that without medication so just kept going until the nerve pain dissipated. That’s the sneaky thing about M.S. It throws random symptoms at you that may get worse or may disappear completely. Did I mention randomly? Another thing that makes me bonkers. So, the pill bottle stayed in the bathroom (I know, I know. You are not supposed to store medicine in the bathroom) until this week when I had an ah ha moment and figured out that a medicine for nerve pain would not differentiate between my legs and my face. The medicine has a lot of side effects (thank you again Mr. Internet), but I thought if I only took it one time a day instead of three times a day as prescribed I might avoid those. I called my doctor to confirm and he gave me permission to cut the dosage and only take it at bedtime. I started last night. And I feel LIKE A BRAND NEW WOMAN. Or maybe like the old woman I was before M.S. snuck up on me (randomly), but I can’t remember it was so long ago. I feel rested, alert and ready to face the day unlike the foggy, emotional, tired woman I have been since the pain kept me up at night and sleep was restless and interrupted. What’s the point of this post besides whining? So many times, we have right in our hands the key to handling life but we are afraid to use it. We want to be big and brave and in control. We can do this on our own. But, when we surrender and admit that we need help, we find relief. And it does not always come in pill form. How many times have I told God, “I can do this on my own”? How many times have I made decisions without taking into account His desires and plan or His words of warning? If there is one thing M.S. is teaching me, it is that surrender is often the fastest way to relief. That applies spiritually as well as physically.
I'm glad you've got some relief! Pain in your face seems worse than pain in other parts of your body sometimes. Yesterday I had a weird headache that hurt on one side of my face.. sinus, eye, temple – all left side. Even my teeth and jaw hurt. It didn't last long, but OUCH! Wonderful that the pill worked for you.
I so get this!
Kudos for trying the med because trigeminal nerve pain is tough.
I have spent a year and a half trying a series of medications in an effort to
combat Rheumatoid disease into remission.
Like MS (also an auto immune illness) this aggravating, progressive, disease does not present the same in all patients or even in the same in a single patient on consecutive days. Sometimes I am mostly good and other days, all of me hurts, and I am so immobilized I feel like the Tim Man in the Wizard of Oz trying to say, "oil can!".
Strange as this sounds it took almost all my courage to process through the prescription options since most of the meds are more frightening than the disease. My doc simply would not allow this saying there was a chance to achieve remission before losing any joints and to forfeit the opportunity would be tragic.
The first one prescribed gave me a 17 day headache before landing me in the ER with a bi-lateral, cranio-facial migraine. (May you never have one).
The second caused a fortunately reversible change in liver function.
The third sent me back to the ER with a misery inducing "renal complication".
The forth plummeted my white blood cell count alarmingly.
Ultimately my doc came to realize there might be something to my oft repeated statement that this body does not properly metabolize anything! Least of all drugs, thus my diagnosis was the probable cause of the trips to the ER were because of accumulation due to non-utilization.
After four epic fails, I told the Rheumatologist I was done with all these meds because as far as I could tell, they were worse than the disease! Two months later when labwork was finally, mostly, back to normal I was asked if I wanted to try any of the big three again, this time starting with a pediatric dose?
As is often true with Divine intervention, out of the blue I said, "Unless there is some other kind of medicine, which works differently with the immune system than these last four and isn't a biologic, then no"
To my surprise she said, "There is one. It was one of the first disease modifying drugs for RA. We don't prescribe it much anymore because we mostly achieve better results with the newer types of DMRAD's."
When I asked what made this one different she said," It is categorized as a immunomodulator not an immunosupressant"
Right away this seemed sensible to me since all the suppressing drugs had suppressed the Hell out of me. Modulating seemed a better idea until I asked how this drug works differently.
To my horror her response was, "It alters your DNA"
Who in their right mind would take a drug that alters your DNA? Well I did but on my terms. No loading dose, starting with a pediatric dose and insisting the pediatric dose, if tolerable, not be changed for 3 months for this body to acclimate and so forth. I was advised this would not work.
But it has.
I am now on the fifth month of this drug, still at the pediatric dose. It may be this dose is insufficient for achieving remission but it has appreciably decreased the inflammation, pain and stiffness by 50%.
I'll take this miracle straight up thank you!
The