The nerve spikes/jerks happen even when I have the stim turned way way down. Not the stim.
Nope

Are the only way I can say is the greatest
thing one could share
what may work for one
is not the same for another
The importance of one who is in absolute awareness
of ones body
PRICELESS
THANK FOR THE INFORMATION
Me

Hmmmmmmmmmm !!!!!!!



Gerry

Gerry, you sceptic!

Have you ever been on the verge of dropping off to sleep, that wonderful drowsy feeling when an almighty jolt out of the blue awakens you. Some call it the soul returning to the body from astral travelling, others say it is the soul tethered strongly to the body and as it tries to leave it is jerked back. Either way, that immense jolted feeling if you know what I mean, is not caused by an external electrical stimulus, it is within the bodies own neural electric system.

The electric jolts Mark and I refer to are of a similar nature only the jolt is accompanied with a searing pain and more often than not we are awake. I have had these for years & long before a neural stim was implanted. It is the nerve endings irritated to their core as explained to me by a surgeon in the UK back in the 1990's.

It is not comparable to the spike in nerve pain that you experience, and I'm sorry you suffer that. It is short sharp painful and gone. Of course the residual pain that is always there remains, but that sharp painful searing jolt, it becomes just a memory of how cruel the body can be in its taunting of you. Until the next time...

I hope that explains it well enough. I'm softly laughing as I can imagine your face reading this. It's so good to have you back.

Pam,
I guess the only thing that I could consider anywhere near what you explain is the sensation when in my sleep, or are almost asleep, is the sensation of falling. I guess in spite of my PN, I am fortunate; I don't have the type of spikes you mention or the embarrassing leg jump or jerks.

I was referring to times when the pain/burning increases and is greater than others; not actually a "spike". Just used the word that was in front of me at the time.

Sorry to learn you have been dealing with these type of spikes for years. Bummer......


Gerry

The electric jolts talk of are gone sometimes before you can even blink. Short, sharp, searing & gone. I'm well used to them now, I'd rather them than the constant nerve / burning pain you suffer.

Now that I am aware they are gone sometimes before you can even "blink"; I would rather have the jolts too.


Gerry

Dear Pam
So on point about our bodies and the cruel surprises
that come out to play
Feeling cheated at times
And understand there are many factors
in my case
my lineage passing on my physical life story
Can only pray the medical brains out there will address the core
of our diseases
Such as the mutation I have
And more then fifty percent of the population is suffering
all new findings
Early in science time
Just in the past fifteenish years
But a very important issue

For example
After learning my nausea lightheaded weighted feel in the middle of my chest then always having pain in neck shoulders and arm
I was not going to be stupid while I was already in the hospital for my CT scan of lungs
I was backed up with three days of matter
A relief my heart is still pushing and pumping to keep me going
So point Eva
I explain to the ER doctor of the mutation
relevant to my body
Having to watch out for clots
As I am prone to them because of this specific mutation
brushed me off about it
In the end
He comes back to give me the above mentioned
in addition tells me my dimer test was normal
When six months ago finding out about my mutation
my dimer test was high
Indication of clots
How frustrated I was
But held my tongue
Leaving and wondering
I think I will write a letter to the CEO'S
I am doing my part
It would be nice if doctors would take a interest
AND LEARN A LITTLE SOMETHING
My body
My temple
I am trying to care for it
My genes just killing me
To those who know their bodies as I know mine
No one should tell YOU what you feel

Love
Me

It's definitely not my month. With everything else going on the last thing I need is for the SCS unit to play up. Well today, my lower and upper back started to hurt way more than the norm, all activities aside, it's hurting more than it should. I went to charge the unit... no such luck, can't get the paddle to link anywhere for the lights to show it's reached a connection. Went to the big remote to see if the unit is on, nope, it's not on either. Now I don't know what's going on, this has never happened before, I can't get a charge and the unit won't turn on at all. I've put the paddle on to charge up and will try again tomorrow morning to see if I can get the paddle to engage with the battery. So either the battery inside me is kaput... I have been finding it increasingly harder these last few months to get it to a good spot to hold and share its charge or, the SCS unit itself is kaput. I just can't believe this, a blinding headache, csf leak, argumentative husband and now my back pain score is 8 or 9.

The headache pills are xanax - I hate alprazolam (Xanax) but that's what my GP insisted I take to get the headache under control, I didn't realise it was xanax until I looked at the bottle this afternoon when I found it (another story, I misplaced the medication), it is a lower dose than what they had me on previously but it doesn't make me feel any better about taking it. GP doesn't think it's a csf leak. She thinks I'm headed for another seizure. Meanwhile while I'm feeling as ill as I am, DB is reclining in the living room asking what's for dinner. Life is crappy this week, pain is overtaking me rapidly, memory is fading and it's all going down the drain. I ordinarily would be crying about now, no tears at all. My eyes are dryer than dust. Why do things happen at Easter when only ER is open. I'm not going there, I'm safer here at home with the meds I have until the normal week rolls round and people I trust are back at work. Not happy Jan

Pam,
I vaguely remember when you were dealing with Root Sleeve injections, epidurals a few months ago, there were issues whether the SCS was working and the possibility the lead moved (I think at the time your SCS was implanted, you said there was only room for one lead since you had so much scaring.) Either way, it appeared your SCS hadn't been working for some time.

Pam, you have so much going on and the side effects of so many steroids so close together may still be causing problems in your system.

You mentioned being prescribed Xanax for headaches. Also you had mentioned Valluim in the past as well. Do you take both of them with any regularity? I know they are both benzos and are for anxiety/panic disorders. The Vallium also is for muscle spasms which I take daily for my muscle spasms on the left side of my neck and shoulder.

Hope you can soon get things cleared up. This is all taking its toll on you.

Gerry