Thursday, March 4, 2010
Firstly, to update you on B's situation, let me just say that it's now in the hands of the insurance companies and we're in the 'wait and see' mode. B's feeling a bit better about things as of right now. Whatever happens, happens.
I do so appreciate everyones supportive comments about B -- I'm happy that I was, in some small measurement, able to convey what an awesome young man he is. Proof I must've done something right. I always say that Ed taught him how to spit and swear and I taught him to say please and thank you. He's a good mix of Ed and I both and we're blessed that he loves and respects us and that he's our son.
Onto today's topic: A few posts ago, I mentioned briefly that I have a rare neurological condition called 'Glossopharyngeal Neuraligia'.
I know. I never heard of it either until I was diagnosed with it three and a half years ago.
In layman's terms, basically it's the ninth cranial sending 'mixed signals' to my glossopharyngeal nerve which is located in our throats.
What it does is send 'electric shock' like symptoms to the nerve causing seizures inside my throat. Brutal stuff.
It's the most physically painful thing I have ever experienced. Mind you, I've been shot in the leg by a rifle and gave birth to B naturally with no drugs who was born 'sunny side up', also rare and makes the birthing experience even more intense. Mom's out there can attest to this (back labor galore on top of everything else!).
These seizures simply knock me on the ground leaving those around me helpless -- there's not a darned thing anyone can do but wait for it to pass. Most seizures last about 20 to 30 seconds but it feels like five minutes.
It comes and goes at will (I compare it to the relapse and remit form of MS). It typically begins in the autumn when the weather starts to change and I can go a year without having them and then it suddenly appears. I can have one or two a day or one every five minutes as was the case the winter before this one. It went on for about a month and a half.
The slightest thing will trigger it: brushing my teeth (the minty-ness of the toothpaste brings it on), drinking something too cold, eating (chewing and swallowing) the vibrations of talking, eating something tart (lemons, for example), breathing in too deeply, and even reflex swallowing.
I haven't had any attacks for over a year...until yesterday.
Just when I thought it was safe.
Just the day before B was saying to me how he noticed it seems to be in dormant mode. We talked about how I was bracing myself for it this past autumn but that it seemed to have decided to have mercy on me this year.
No such luck.
Yesterday I ate the lemon out of my iced tea -- and it began.
When you're in 'dormant mode', it's nice to kind of forget about it and live life normally for a while -- not worrying about whether or not you're going to have an attack. So, with it not appearing this fall/winter, I was able to enjoy food and drinks again with no concerns.
However, it's decided to rear it's ugly head again letting me know it's very well present in my being and that it's clearly in charge.
I've had to cancel my walks with Nikki (so sorry, doll!) until I see if this thing is going to ease up on me or if it's going stay a while and B is going to have to, unfortunately, drive me to my therapist appointment tomorrow (again -- so sorry, B).
::EDIT:: I was asked a very good question in regards to how it affects my driving -- thank you, Meeko, for making me clear this up -- great question! When I have these attacks, they come out of no where and are indeed so painful that it sends me on the floor doubled over -- were I to have one while driving, I would certainly cause my car to veer and possibly have an accident. So, I avoid driving while I am in the throes of this affliction so as not to cause harm to myself or someone else. Secondly, the meds make me quite drowsy, lightheaded and loopy (yes, even MORE loopy -- whoda thunk that was possible, eh?) and, per label instructions: "May cause drowsiness. Use care when operating car or heavy machinery".
Damn. And just when I was getting used to the forklift and bulldozer. Drat the luck.
Life is simply on hold until I know more what this thing is going to do.
A little history: almost four years ago, I would get little painful twinges in my throat. I didn't think much of it; "Oh, I'm just tired, stressed..."
Then one day in October of 2006 I was getting ready for work (I worked at 'Yankee Candle' at our local mall) and I was brushing my teeth when I was suddenly on the floor, gasping for air and screaming bloody murder while holding my throat. I was alone and crawled to the phone dialing 911.
Not to be a drama queen but I seriously thought I was dying (I had NO IDEA what it was!) and began crying to the 911 operator as it wouldn't let up. But as quick and suddenly as it came, it left.
I called 911 back and got the same operator, I was apologetic and embarrassed. She urged me to go to the doctor and wished me well.
I called my 'oldest son', 'J', and he drove me to urgent care. From there over the course of the next three weeks the attacks kept coming while I was being sent to ear nose and throat, my regular practitioner and the pain clinic who then told me they thought I had 'Trigeminal Neuralgia' which is also known as the 'Suicide Disease'. Trigeminal Neuralgia is the most painful affliction doctors know of.
I'll just go jump off the nearest foothill right now.
From there, the pain clinic sent me to a neurologist and within five minutes of talking to him, he showed me a text in one of his medical journals, it was me to the 't'.
I indeed had a name for my affliction: 'Glossopharyngeal Neuralgia' (GN).
It's diagnosis is process of elimination: in other words, making sure that it's nothing else such as a lesion on my vocal cords, etc. So, I was in for a long haul with M.R.I.'s, Cat Scans and Ultra Sounds just to double check. But they found nothing to indicate that it was anything other than GN.
There's no rhyme or reason for why it appeared. It's an enigma (like most things neurological) that can later -- but not always -- lead to MS.
I was prescribed anti-seizure medication ('Neurontin') which I take three times a day during it's non-dormant period.
I have to be careful because not only does 'Neurontin' make me quite drowsy and lightheaded but it can also ultimately damage my kidneys, which I need to have checked regularly. So, I only take the 'Neurontin' when it makes it's appearance such as now.
The only other solution is a surgery which repairs the ninth cranial, however, 30% of patients end up with half of their faces paralyzed (the same goes for patients with Trigeminal Neuralgia).
Plus, we simply cannot afford the surgery. If we could, that would be a risk I would be willing to take rather than deal with these GN attacks which are damned near intolerable and not easy to endure again and again.
To close let me say something that everyone has heard at least once in their lifetime and that Steven Anthony said to me in support recently: "That which doesn't kill us makes us stronger".
I hope he's right.
It's either me or it.
On a lighter note, stop by tomorrow -- it's my 'SITS' day (thank you to Steven Anthony for adding the links to my post for tomorrow)! Back later today to post on my '90 Days' blog, too.
Peace and serenity,