I've turned the stim off this morning to see if its what is causing the constant headache. The hip pain has returned with a vengeance at night when lying down, I'm not sure about when out and about as I haven't been well enough to be out and about! Oh I wish.
Mid week I felt well enough to try some walking and did 20 minutes but the remainder of the day and those that followed have been driven by this constant headache pain. Panamax does nothing for it, I drink 2 litres of water daily so I know it's not dehydration (it's very hot here, yesterday it was 44c in the shade, today will be 41c).
I've taken my normal meds, 20mg oxy, 10mg Lipitor, 50mg Pristiq, 2mg Progynova and 2 Panamax in the morning each day with Panamax every 6 hours, in the night 25mg Valdoxan, 12.5mg Serequel. All have their own side effects, but I've been on them for over 12 months so don't think it's them causing the headache.
The stim has been off for about an hour and I've developed this pulsing pinching pain on the left side just adjacent to where the hip pain kicks in, nerve pain I imagine. The left hip pain I'm sure is referred pain from L3/4. The left arm/palm tingling pain is there, noticeable today but not yet intolerable, I'm sure by the end of today it will be zinging seeing as the stim is off. Where I had the fusion done L4/5 S1 has been giving sharp on and off pains this week and has settled to a dull throb, just above L2/3 is a stabbing pain. So, it will be interesting to see if its the stim causing he headache? Anyone else experienced this? I worry about the headaches as they said the seizure I had in August 2012 which caused the thoracic fractures was due to acute headache pain.
I see my original neurosurgeon on the 20th, he referred me to the new PM specialist and he was not aware hey were doing the SCS, I wonder what his reaction will be.

For Pam. For You.

Well, I turned the stim off for 24 hours and yes the headache abated. I turned the stim back on using P1 L6 to begin, moved to P2 L4 and then back up to P2 L6. The headache is still there but not intolerable like it was. As for my back and left arm pain, well with the stim off it was excruciating and dare I say it, acute! With the stim on now, it's still high and these last two days have been very bad.
My rep is back from holiday and I will see her along with my PM. Given the level of my pain I think we will have to move forward with the laminotomy and paddle insertion because I'm not getting much relief. My pain levels are around 7 on avg and I'm not even leaving the house. I can't spend the rest of my life like this!

My husband got home 20 min early from work last night, I greeted him in the driveway and said "thank god you are home" and he replied, you look terrible. I wasn't even well enough to cook so he went back out after sorting the dogs and got pizza which I ate in a daze.

My husband is my lifeline, he works 12 hour shifts and has a 14 hour day incl the drive to and from work, then gets home and has to sort the animals. The 3 dogs are working dogs, although 2 are now retired and are my guardian angels.

I so want my life back, I had hoped so much the one lead would work but it seems not to be. The pain just seems to be in keep on keeping on mode. Not happy!

Pam,

You are most likely dealing with surgical, as well as your usual pain. I am so very sorry you are having to deal with this.

I myself, had an unsuccessful trial stimulator a few years ago. I deal with spine/PN pain but have been able to keep the pain at least tolerable thru a regular schedule of narcotic (Oxycontin/Percocet) meds. The hardest part was the acceptance of a life with pain; but I do whatever helps me get thru each day.

Will keep you in my prayers.


Gerry

Hi folks, I've got the stim now on P3 L6, for those wondering, that's program 3 and level 6. From all that I have read, I'm lucky that I have the controls at hand and can program the stim myself. I knocked myself out on Thursday at the reps instructions and again yesterday, all to try and knock this headache out of the park.

To be clear, I took my normal meds in the morning at 4am (we are early risers even on Lyndon's days off) and at 3pm I took my evening meds and a 1mg Xanax. Straight off to sleep, Lyndon woke me at 7 for dinner which I ate in a daze and then straight back to sleep and up at 4am.

So I have taken the 1mg Xanax for two days straight and will not be taking it again any time soon. It's a horrid drug long term, yes it brings relief, yes it soothes your soul, but, it makes you forget what you have done and said while it's in your system and you can miss whole conversations and commitments, then, when you want to stop, it torments you with hideous withdrawal symptoms. I was on it in 2012 after the seizure for about 4 months and had withdrawal symptoms when I stopped and had to go back on and create my own plan of cutting down little by little to cease it.

My hubby is a drug detection officer and all our dogs are drug dogs, 2 now retired and active angels watching over me. Anyhow in many of the seminars hubby attends they now refer to Xanax as worse than heroin. It's that bad! Waking up this morning, the damn headache is still there along with the left arm, left hip and thoracic pain so even with the stim now at its highest the pain is not under control. I know the stim can work because I experienced relief from it in the early days and in the trial. There are days I wonder if in my past life I committed some heinous crime and paying for it in this life.

My best friend is hosting a girls get together tomorrow at 11am, smart casual dress and she has a photographer coming, she is very thoughtful, in our circle of friends many of the men have cancer or heart disease, or our parents suffering from cancer, dementia etc and she wants this day to be a celebration of life. They all accept I will be a wallflower just sitting and doing nothing, it's wonderful to have friends who are like family. My 82 year old mum is driving me there and I will taxi home as hubby working. Will leave home a little early and on the way drive past houses that mum n dad lived in when we were children. A little trip down memory lane may cheer me up.

Pam,

Hopefully much of this pain will be just a memory.

Glad you will be going to the 'celebration of life'; how beautiful. I can't imagine your circle of friends/famiy will see you as a wallflower; but caring enough to be there with all of them. Just be careful not to overdo.


Gerry

I've cancelled the cleaner and for the first time in over 15 months put on a duragesic 50mg patch. Yes I will get an angry angry allergic reaction to the adhesive, but it's just too bad, to bear this pain in this relentless heat above 37c is more than a koala can bear! The frustrating thing is the duragesic fentanyl patches work, but, the side effects they give me in the long run are far too much. I will take it off tomorrow and be thankful for at least one day with moderate rather than severe pain. Very much looking forward now to seeing my rep and PM and getting this stim sorted. It's frustrating to not even be able to stretch or get relief by putting my arms above my head. Sorry, just feeling sorry for myself, for those reading this and contemplating stims, take heart, they do work, I've just had complications and all will get better.

How I hope and pray your day out with the girls has been indeed refreshing to your spirit and that you were more involved and less of a wallflower. Golly, in your situation merely being there is far less "wallflowerish" than having stayed at home!!! It is cool your Mum could drive you!

I am glad you are blessed with caring family [inclusive of your angel dogs] who watch over you.

Give it time. Work the dickens out of that stim. Explore it. I was allowed to actually program my stim from the first day, and it has served me VERY well since mid 2010. You can get there! I have hope and share prayers for you in this regard.

Using my stim I was able to withdraw from every single drug which had ruled my life during medicinal pain management. I hope as well for you this may be the case for you.

CARING Pam,
Yup,

I am so very sorry you are going through such a bad time....and 'no' you are not feeling sorry for yourself. This pain you are dealing with is more than what most people could even conceive of!

You are a couple days away from seeing your initial neuro. Maybe he will have some words of wisdom or ideas of how this pain can be reduced.
How did it go with the duragesic patch? I hope you didn't suffer an allergic reaction. I know how helpful these patches can be, as I've lived off of them for 3 yrs now. I also know about the rebound/withdrawal, like you mentioned. I hope you aren't dealing with anything like that on top of this other stuff.

You are certainly being prayed for, dear Pam.
Please God let things turn around SOON.

Caring,
Rae