I'm not sure where I belong...

[LJ-Bain]

The mind is such an amazing thing...even the tiniest thing can wreak havoc on it's intricate balance.
I've been on PNES support networks and I feel like I can't relate to some of their stories for some do have terrible histories and my heart aches for them and the difficulties they face with stress and relationships...
There are many who suffer both.
I feel like such a nomal person with the exception of these "seizures".

The seizures are increasing again now that my Keppra is decreasing. The left side of my body tightens tighter, my jaw clenches tighter, my hand clenches into a fist and my nails leave a painful impression. They are clustering more although I still have my similar warnings when I feel my eyes start to close but if I can't find a place I feel them to start to flutter and I stumble to the ground.
They are quiet, except when I cough after it's all done. It's almost exactly a month ago when things became intense so cyclically it makes sense too.

There are things that don't make sense. My hemi facial spasm that lingers after a seizure even when I'm up and about, the tingles around my face, neck and opposite shoulder and arm.
The vision in my right eye is starting to grey whenever I read black and white things.

I'm so confused.

You all have been so supportive. I am thankful.

When you don't know what's going on with you it's hard to think of the best possible scenario. Maybe it's an inflamed nerve. Those cranial nerves do cover a lot of territory... OR maybe it's the beginnings of MS? We are our own worst enemies. August will bring answers or more questions when I see the specialist.

I'm a trooper. I have to be! My house is pretty messy though. But my kids still get tucked in at night with their stories and lullabies and I hope they feel secure.

 

[julie wishes]

I get it. I really hope that weaning off Keppra brings about some answers for you.

 

[LJ-Bain]

Thanks. I'm going to try not to whine as much! Life is complicated for everyone here after all.

 

[Silat]

You know where you belong?
Where people care about you.
And here is a pretty great place for that!
Jusssstttt saying.

 

[LJ-Bain]

Silat...you're a good guy. Thanks.

 

[Silat]

Might I ask, in relation to your post, what caused the seizures to start?
Was there a specific event or did they just begin one day?

 

[LJ-Bain]

Ah yes. The lovely drawn out history. Four years ago they discovered I had a wicked sinus infection but I didn't know I had one. I went to the hospital because I had slurred speech and a dropped face and weakness on the left side of my body. It looked like a stroke. As I healed I started to have convulsions and tremors. After months of antibiotics something popped and I started to feel better but I would have episodes from time to time.
They worked up my brain, heart, lungs, stomach and even ruled out breast cancer (I guess it can metasticize in strange ways). They discovered a small aterial pulmonary venous malformation that can make me prone to transient ischemic attacks but they poo poo'd that.

Things would get worse whenever I got pregnant but would go away the first 6 months when they were newborn and now after my 3rd baby was born, they came back when he was 6 months and became daily. That was in September.
I have had many eegs on different kinds, and cts and mris and bloodwork so I can feel rest assured that I am healthy! I guess! I have 2 abnormal foci on my right fronal lobe and a small cyst on pituitary gland they discovered. Also normal.

That's my short version. It's been pretty complicated.

Where did your story begin?

 

[Silat]

Any chance that the sinus infection ended up attacking your nervous system?
Really aggressive strains of infection, like MRSA types, can deal some pretty lasting damage to the nervous system, which could be the cause of your problems. Likely since it wasn't in your brain, the infection could have spread to your spinal cord, and if that is the case they'd have to scan there to see if there's damage... Infections in the spinal cord takes months to heal, which could also explain the long course of antibiotics you required. A little damage to the spine can leave lasting changes, so it's a route you could look into if you haven't already.

I had my first seizure when I was 17. Typical Tonic-Clonic with an aura, but I didn't recognize it because it had never happened before. Had another one a few months later, and was sent to a Neurologist. Went there for years, having mostly partials and partial complex seizures which were decently controlled on meds, but nothing ever showed on an EEG and my CT and MRI's were clean.

Then I had another TC, which they weren't sure was actually a seizure, but I knew the routine of them by that point, as 3 years had passed and I had experienced them before. They left that one as a "maybe" and kept switching and changing doses on meds every few months for years seemingly without end.

Then a week ago another TC broke through, during a family get-together. Went to the neurologist on thursday, and had a series of different seizures while I was there, ending in my fourth TC seizure and after witnessing it the Neurologist finally gave me a diagnosis of E.

From here... I don't really know. I'm hoping this med works but I'm not really seeing much improvement. It's been less than a week though so I'm willing to wait it out and let things develop for a while before making any official calls on the med.

 

[LJ-Bain]

Thanks Silat for sharing.
I do hope this new med helps for you. Can you imagine a life seizure free? Oh the things that one could do. The medical world is a roller coaster ride that is for sure. I can only imagine what a tonic clonic feels like. Never been there and they seem pretty scary to me. A blessing in disguise to have so many witnesses!

Regarding my spinal cord...I have often noticed when I have pain associated with my seizures they are based around the back of my throat. However, they did ultrasounds of my veins 4 yrs ago and I didn't have inflamed lymph nodes so they poo poo'd that.

Over the years I have asked to be referred to an ENT but my gp will not refer me. I love my gp in all other respects. I have had an x-ray of my throat that confirmed gastic reflux when I swallowed the barium but I don't know if it would have picked up anything else.

Unfortunately if I complain about a feeling in my neck there can be a psychological anxiety issue associated with that and I sure don't need anything else to point me in that direction!

Maybe it's a question I'll save for August. Thanks.

 

[Silat]

Well certainly don't stress yourself about it, just write it down with whatever other questions you've thought of and deal with it when the time comes!

A seizure free life? Hmm... It's hard to imagine, though I had that for 17 years.
Tonic Clonics feel like nothing when you have them. When one has them, they're unconscious. I think that's a good thing, I couldn't imagine being awake through one of those, with every part of your brain and your entire nervous system lighting up like a christmas tree....

 

[julie wishes]

LJ, one way to prove you're not anxiety ridden would be to go on the anxiety meds and see a psychiatrist. If they don't work, then that is ruled out as well. Now I've heard some of those meds can cause a seizure, so I'd be careful.

But bottom line, you're probably at the right forum. You have a history of seizures, correct?

So many weird things happen when you get pregnant. I've seen it many times. Hard to believe a cyst on the pituitary is " normal" but I've heard that before as well. It sure sounds like you've had a rough go? I suspect hormones are involved since you had so many around your pregnancies. I was online researching on Google last night, and I typed in "funny feeling in head" all kinds of bizarre stuff came up. Like yeast infection in head post sinus infection, and many more off the wall things. Who knows. Your body must have encountered a weak moment at some point and is still trying to recover.

But we care and you should keep us updated even if you surf other sites

 

[thornton8000]

LJ-
I hear ya from a diff point I've been told never had a TIA even tho I did have one june of 2011 seizures started back in 6th grade and had a major one in 95 and last star5ted acting up 7 years ago and have been acting up ever since my last epi doc told me its only PNES, take out soda, stress get out and walk more 45-60 min 3x a week, and you'll be fine and see a talk doc and life will be good and you cant drive.
I told her well her's the deal, my stress is the lowest its been in 7 years so no issues in that dept, soda intake lowest its been in 4 years and been adding more water based bev everyday and somedays I dont have soda so that is not always a issue, and also based on having all my back prob's and having a prior TIA, I can hardly walk 20 min a day somedays if I'm lucky, so I laughed at her and my neuro who sent me to her knows this and didnt correct her, so it became time for a new opinion and I see both new opinions this next 2 weeks.
I say you found where you belong!
everyone here is awesome! they care show support and help out whenever possible and let you vent when ever you need to so you've found where you belong my friend look no further!

welcome home!
mike

 

[jgeekie]

Hey LJ

I'm confused as to why you ask where you belong. I thought the answer was obvious, since you're there already. You're with those kids of yours, building a loving and secure environment for them. Sure you can speculate about how your condition affects life but in the end, you should be wherever you are happy. What other answer is there? An ice floe off the coast of Baffin Island? Sitting in the middle of Lapland counting trees?

I know you worry about how E will affect your kids but there is a very bright side to your condition. Your children will grow up understanding what adversity is and what it means to have the strength to continue in spite of the obstacles to the utopian life everyone imagines.

There's not much worse than the unknown when you are looking at medical problems.

Just remember that the world turns.

Jay

The mind is such an amazing thing...even the tiniest thing can wreak havoc on it's intricate balance.
I've been on PNES support networks and I feel like I can't relate to some of their stories for some do have terrible histories and my heart aches for them and the difficulties they face with stress and relationships...
There are many who suffer both.
I feel like such a nomal person with the exception of these "seizures".

The seizures are increasing again now that my Keppra is decreasing. The left side of my body tightens tighter, my jaw clenches tighter, my hand clenches into a fist and my nails leave a painful impression. They are clustering more although I still have my similar warnings when I feel my eyes start to close but if I can't find a place I feel them to start to flutter and I stumble to the ground.
They are quiet, except when I cough after it's all done. It's almost exactly a month ago when things became intense so cyclically it makes sense too.

There are things that don't make sense. My hemi facial spasm that lingers after a seizure even when I'm up and about, the tingles around my face, neck and opposite shoulder and arm.
The vision in my right eye is starting to grey whenever I read black and white things.

I'm so confused.

You all have been so supportive. I am thankful.

When you don't know what's going on with you it's hard to think of the best possible scenario. Maybe it's an inflamed nerve. Those cranial nerves do cover a lot of territory... OR maybe it's the beginnings of MS? We are our own worst enemies. August will bring answers or more questions when I see the specialist.

I'm a trooper. I have to be! My house is pretty messy though. But my kids still get tucked in at night with their stories and lullabies and I hope they feel secure.