Wednesday, April 11, 2012

It's a revolving door?

No. If you are smart and persistent, there is hope. I have found a group of neurosurgeons that think they have found the source of my pain! Or so I hope.
I have tried many medication, and seen many different 'specialists'. One even had the nerve to tell me I didn't have epilepsy, and never had seizures, even though I had document meants and video of them ( video monitor EEG).

So back to the diagnoses- which for anyone who is suffering from anything and doesn't know what it is, is a great relief. I met a team of neurosurgeons, who have a firm belief that my epilepsy is the cause of my central pain. Where the origin of my seizures are created, in the temporal lobe, near the area where our senses are, is creating pain.
It sounds reasonable to me, and I can kill two birds with one stone, if I'm even eligible. I have been undergoing a series of tests that past few months, and still have a few to go. I know brain surgery sounds extreme, but it was explained to me back ten years ago, as an option to control just my seizures, so I have had some time to think on it.

Will it work? That has yet to be seen. Even if it isn't a 100% cure, I could take less medicine, and maybe drive. I could. Get a job, and better take care of my son. We will see.

Sunday, May 1, 2011

An Apology-

I want you all to know that I have not deserted you.  I am still here.  My pain still very much alive.  I have had to turn my attention elsewhere. 

My son was diagnosed with Autism shortly after my last posting.  I have been pouring all of my focus and efforts into advocating for him, as I had been for myself.  People, strangers, pouring in and out of or home, day in, and day out.  Therapy for at least two hours a day. 
I had to forget my pain for the sake of my son.  I found what time I could to go to my pain doctor, and we worked on a plan to get me off of the percocet.  That was a week from hell.  We have been experimenting with other medications to see if they would help ease the pain- using Alzheimer medications and taking them at high doses for the off label use to help with nerve pain.  My neurologist and pain doctor think my pain is more of a Central Nervous pain disorder than RSD, but no doctor seems to really agree on any diagnoses. 
I have a file of all of my medical records, films, photographs documenting the progression of my condition.  I talk to the insurance company almost weekly now. 
I fell into a deep depression after my son was diagnosed, and it took all of the internal strength I could muster to get back up.  There were days I just slept through the pain.
Now it looks as if the current medication trial isn't working, and I will either try increasing my seizure medication to help the pain, or start taking an oral ketamin.  Both perspectives have me nervous.  I'd hate to tinker with my seizure medication, since my seizures are fairly well controlled.  As far as the ketamin, from what I understand, it is a very sedating medication, and I need to be as awake as possible.  My son has a lot of physical demands.  He needs me to take care of him.

I promise to update again.

Friday, January 14, 2011

It takes a lot.

I've been to Boston and back.  The neurologist treated me like I was wasting his time.  And I was disappointed, to say the least.  I think that was the point where I became emotionally numb.  I've had no other choice.  At the rate I had been going, and with the holidays, I was going to emotionally burn myself out.
I have since been through a sleep study, been told my liver is starting to dysfunction, and had continued dental and inner ear problems on my left side.

No new answers. No new news.  I normally would be frustrated and depressed.  But, I have focused my energy in more productive ways.  I have too.  I have my son.

I am a volunteer on the art community-  That helps a lot.  I get to talk to people and help people out.  Something I am not capable of physically doing at home, or even with friends.  Some are just as 'drained' of my health problems, and I can understand that.  It is nice to take a 'break', and feel normal for just a little while.

Art in general, is great therapy for the physical and emotional pain.  I get to step away for a period of time, and work on something that either reflects my hopes and dreams, or lets me release my deepest thoughts and feelings.  It's a period of meditation.

I'm going to have to kick it back in to high gear again.  Not know why I hurt, the drain it is taking on my physical and emotional health, is having its affects on not only me, but the ones I love.
Eventually something will need to be done.

Saturday, December 4, 2010

Alot has happened-

I had my wisdom teeth removed just before the holidays, believing it was the cause of my discomfort in my left ear.  Well, now that everything has healed, and I have been on anti-biotics for almost 2 weeks, I think we can can safely rule out any infection. (I have also confirmed this with my GP).  It is a mystery to me, because the pain is crippling.  But it also seems to coincide with my flare ups.
I do have an appointment in Boston this week!  What I thought might take 5 to 6 months will be happening before the end of the week.  I may finally know why I have pain, muscle spasms, parasthesia, mood swings, memory loss, and all the other nasty stuff that has happened to me over the pass few years within a matter of days.  It seems to good to be true...
I had to pick up a copy of all of my tests done over the course of the year.  I snuck a peek at my MRIs and X-Rays... I'm no doctor, but I thought I only had one white spot on my brain (I have Mesial Temporal Sclerosis)?  There looked to be at least eight...  I'm not going to freak out, but this makes me wonder if perhaps I have been diagnosed wrong?  My new doctor did say he thinks my pain is related to my central nervous system.  He wouldn't diagnose me because he is not a neurologist.  I just trust him more.
And it makes me all the more anxious to see this specialist in Boston.  He does specialize in both pain and neurology.  I'm excited and nervous all at once... and yet I don't want to get my hopes up too high- because I've been down that road before way too many times.

Tuesday, November 9, 2010


This past Friday, I began to suffer from the worse case of vertigo I have ever experienced.  It felt as if I were walking on a boat, I was nauseous, and I couldn't focus on anything.  I went to the ER that night, where they gave me some anti-nausea medication, yet I still felt car sick for the next 3 days. 
Yesterday, I also had a terrible earache.  I went to my GP to rule out an ear infection.  He said I was showing no signs, other than a slightly red throat. I made a follow up for this coming Friday, in case things haven't improved, and went home. 
The pain has gotten worse, radiating from my jaw and ear.  It is a stabbing,throbbing pain, that gets worse when I move my jaw.  The only thing I could think that might make my face hurt like this, and also cause the vertigo I had been experiencing is either TMJ, or an impacted wisdom tooth.

I already know that my wisdom teeth on the bottom are impacted.  I never had them removed, because they weren't bothering me.  So I have made a dentist appointment in the up incoming days to see if that could be the culprit.  I think my only saving grace has been the pain medicine for my RSD.  I remember when my siblings wisdom teeth began to be a bother to them, and both of them had impacted teeth...  they were in agony.

For now, I'm just glad the vertigo has gone.  I could not get out of bed, or open my eyes it was so bad.  At least with the pain, I can some what function.  It's all a mater of thinking of shades of gray.

Wednesday, November 3, 2010

-Just When I think I can Relax-

So I remember the term the doctor use to describe the 'uncomfortable yucky feeling' I have on my side.  Paresthesia.  It burns, it's painful, and sometimes it is just plain old yucky.  People who have had experienced any type of anxiety have had felt some form of it... the feeling of the hair standing on end.

I have it constantly, ten times more severe... and much more painful.  I no longer wear denim, it hurts my skin. 

So I look up conditions that could cause paresthesia, and there are many- RSD, fibromyalgia, lupus, vitamin B deficiencies, anxiety, I could go on...  but I narrowed my search to 'one sided paresthesia', and I came up with this article:

A 48-year-old right-handed female patient with a right aortic arch and history of tetralogy of Fallot repair as a child presented with recent episodes of severe headaches that resolved and episodes of left-sided numbness. On examination, the patient had no neurologic deficit. MR imaging of the brain was performed, which demonstrated tortuous dilated vessels in the right perimesencephalic region and mass effect on the brain stem. Cerebral angiography demonstrated a right proximal PCA dolichoectasia of the P2 segment supplied by a patent P1 segment and posterior communicating artery (Fig 1). Other areas of milder dolichoectasia were present with mild enlargement and tortuosity involving the right intracranial internal carotid artery, basilar artery, and distal right anterior inferior cerebellar artery.
The one test I haven't had done (recently) is an MRI of my brain.  And this article is, in short, is saying that the patient had a problem with the vascular system in her brain.  The majority of what I have read about one sided paresthesia involves the vascular system in the brain.  That scares me a lot.  My little sister (she was 25 at the time) had a stroke.  The entire left side of her brain basically died.  
The other condition I have read about are transient ischemic attacks (TIA) or 'mini strokes'.  These are one third of the time warning strokes to a larger stroke.

Now, I could be blowing everything out of the water, and worrying over nothing...  But I called Boston, none the less, and made sure I let them know I was very concerned, and wanted to know if they had gotten my records yet.  The receptionst found them, and when I told her I was experiancing left sided paresthesia, told me she would mark it as 'Urgent', so I would be seen as soon as possible. 

I'm not sure if I feel any better...  But hopefully I will know what is going on soon.  Until then, I need to just find something to do to keep me relaxed, and pain free.  The more good days, the better.