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,


Lee the Hot Flash Queen said...

Wow...I don't know if I could handle that. And, it's true..what doesn't kill us make us stronger...and wiser and blah blah blah. I say what doesn't kill us makes us want to kill others. At least that's how I work!

Jo said...

Ha-ha-ha-ha-ha--I love it!

A pissed off gals new motto!

Thanks for stopping by -- I will come by soon again as I just LOVE your blog!

Happy to have you as a new follower and vice versa.

Enjoy your SITS day!


Meeko Fabulous said...

Wow! How does this affect your driving? You're such a tough cookie! btw, I love lily pads! :) X's and O's my dear friend! <3

Jo said...

Thank you, my friend.

Great question, too -- I added an edit to this post in regards to my driving.

Thank you for that -- wonderful point I neglected to add.

Love you and appreciate your concern and well wishes, as always.


nikki said...

So sorry about your condition returning just when you felt at ease. So glad you have a wonderful son who is always there for you. You and Ed definetely did a superb job! I miss you and I love you. Hang in there. My thoughts will be with you tomorrow at your 2nd session. Let me hear how that goes. In the meantime keep doing like we all do,get by day by day. Sometimes it is second by second. Love ya.

Jo said...

Thank you, doll. I appreciate that. I love and miss you, too.

Hope to see you soon -- I'll keep you posted on everything.

Thank you for your continued support, patience and udnerstanding.

Talk soon. Stay well.

Love you.

Elle said...

So sorry to hear about your condition--that sounds absolutely horrific! I hope this "flare up" (?) passes quickly.

YAY for your SITS day tomorrow--that is so exciting!! :-)

VKT said...

I don't even know what to say...


that is a virtual hug sweet lady

Minky said...

Holy Crap! That sounds scary! I hope it goes away soon...remission? Remittance? Just go away, right?

Happy SITS Day!

Elle said...

I am so sorry to hear about your condition. It sounds very scary but you also sound like a strong woman! Congrats on your SITS day, I hope you have a good one.

xoxoKrysten said...

Stopping by from SITS to say hello and congratulate you on your SITS day!

Susan Higgins said...

Happy SITS Day!

Jo, your story touched me deeply. My mom's name is Jo and my dad's name was Ed. You reminded me of my mom, talking your story. My mom is like you, she doesn't give up at all... she's a fighter, just like you.

There's always hope. My mom has Alzheimer's with lewy Bodies - she lives with us, she hallucinates... it's insanity. Most people would have given up on her, but I didn't. Today, she's healthier and happier than she's been in decades. She has her good days and not so good days, but the good days are more prevalent.

My point is, have you tried alternatives to traditional medicine? My mom sees a Naturopath Doctor who prescribes natural remedies and homeopathics. Her traditional doctors are amazed.

There's power in natural remedies, they help the body to heal itself. You are a vegan which is great first step. Healthful eating is huge.

Anyway, sorry to leave you a novel for a comment. Your story touched me. I'll be back.

Jo said...

Thank you, Susan. I actually LOVE long comments and have a tendency to leave long ones myself. Whoda thunk it???

I have looked into homeopathic meds as I think that is indeed a healthier way to go (since I'm a vegan, I, naturally, prefer 'alternatives') but have yet to find something out there to stop the seizures. I've poked around on-line and found many to be scams.

I would really like to see someone in person who apecializes in homeopathology but money is, of course, an issue here.

It's definitely something I haven't ruled out...

I'm sorry to hear about your Mom -- I used to work in assisted living where we had an Alzheimers and Dementia unit -- it was exhillerating to work with these fascinating people who touched my heart.

I hope to one day get back into it -- however, the place I worked at left a bad taste in my mouth. NOTHING to do with the residents themselves but more the higher up's and the powers that be.

I so appreciate you coming by -- many, many thanks. I will be returning the favor.

Peace and serenity,

Marie said...

Wow, I haven't ever heard of that before, I am sooo sorry you are in pain and having to deal with something so horrible...Hang in there...XXXs

Heather said...

WOW!! Yikes! So sorry you have to deal with this!
Also,Congratulations on your SITS day today! :)

cheekymama said...

That is some scary stuff. I'm really sorry that you have to go through something like this but it sounds like you've got good support from your family.

On the plus side, you all are gorgeous! Sorry if it's shallow but you guys are knockouts from your pix! Happy SITS day and keep on keeping on.

Loved the poem welcome by the way, very creative (even the turtledove part LOL).

Stop by mine at any time at (cheekymama's sort of my quiet alter ego)

Amanda said...

I work in a hospital and we have a neurosurgeon here who is a super specialist for Trigeminal Neuralgia, so I've heard of it! But not what you have, although if it's anything like Trigem, it's probably brutal! Hope this flare up subsides soon!

J. L. W. said...

I hope this attack subsides quickly. What a scary thing to have and for it to happen out of the blue. Congrats on your SITS Day!

Irena said...

You're a great and very strong person! I'm sorry for your condition :( I can only imagine how hard it is :( I hope blogging helps you relax! It helps me! I wish you all the best and I'll be back :)


CoconutPalmDesigns said...

I'm sorry you are going through this. Many blessings being sent your way.

Cheers :-)
- CoconutPalmDesigns