[pinkswede17]

So my story's kind of long, but I'll try to be as brief as possible.

I started having neuro issues in the form of constant headaches and depression following multiple concussions and one serious traumatic brain injury that caused a contusion (bruise) on my frontal lobe. These issues never really remitted. Never had issues with headaches prior, nor any previous issues with depression, although I've had anorexia since I was about 12-13.

Fast forward to 2013, 4 years later, and I got a strep throat infection from my brother that was poorly treated and it ended up tracking to my cervical spine and causing osteomyelitis, meningitis, epidural abscesses and cerebellar abscess, in addition to a huge abscess in the back part of my throat.

I waited on it way too long and walked (somehow) into the hospital in full blown septic shock. They gave me many IV infusions quickly to bring up my blood pressure as I was crashing and caused central pontine myelinolysis by correcting my sodium too rapidly.

I was then transferred to a much larger hospital and had multiple surgeries including; drainage and repair of the throat abscess, C2-C5 laminectomy, a C1-C5 spinal fusion, and craniotomy followed by a craniectomy when the swelling continued and an incision and drainage of the abscesses in my brain, followed by a "wash-out" and removal of part of my cerebellum. I was in the hospital for approximately 4 months, and had a very long and difficult recovery (difficulty walking, speaking, swallowing, cognitive deficits) and spent another almost 3 months in a rehab unit going from a wheelchair to a walker and finally walking again, and learning how to eat again and (trying) to learn how to think again.

I've recovered for the most part. I run approx. 3 miles every day. I still have issues with eating so I have a feeding tube for about half my calories and the "brain fog", which was probably the most difficult to overcome, is still somewhat of an issue. I also have myoclonus, probably from the central pontine myelinolysis, have had a couple seizures, have neurogenic orthostatic hypotension as well as POTS, am ALWAYS exhausted, run down and semi-depressed and have constant headaches and neck pain. I'm on meds for the seizures and myoclonus, meds and IV infusions for the neurogenic orthostatic hypotension and POTS. However I can't take anything that would make me drowsy or any kind of narcotic due to the work field I'm in. I've been on medical leave for 3 months due to 5 separate episodes of sepsis (they think my immune system was damaged as well) and am having to have a competency assessment before I can return.

Right now, I'm struggling to do anything. If I had my way, I'd lay on the couch all day watching Netflix. I barely ever make it to the gym before 3 and that's often all I do all day, except for some cleaning. While in the hospital for the sepsis episodes, I was given IV narcotics for horrible body aches due to the infection being systemic and I so badly want to still be taking them. It's been the only time in the last 2.5 years that my head and neck weren't at least a 5 or 6/10. And it's just hard. I can't do much about the headaches/neck pain. Can't take NSAIDS due to being on blood thinners, Tylenol does nothing, Neurontin, lyrica, Elavil, Cymbalta did nothing. Botox maybe brought it down to a 4/10 for a day or two and then it rebounded worse. I was getting occipital and cervical spine blocks once a month for a while and that provided at least some relief, but I can't right now due to financial, insurance, work issues etc. And the cognitive issues are really frustrating. I HAVE to be on top of things, quick to think and respond, intelligent, have lots of endurance and have great fine motor skills for work and I struggle a lot with all of those.

I guess this is just a rant. I'm hoping that someone has had at least one of these issues and can relate. I'm open to hearing any suggestions/advice/personal experience etc. I'm getting so frustrated. I can't handle living another 50 or 60 years with this (even though I likely won't due to all my medical issues).

Thanks for reading if you made it this far.

[Diandra]

So sorry for what you have been through. Quite a medical ordeal.

If the IV pain meds in the hospital helped you, why not ask your doc for a trial of an opiate to take as you need them?
I know you said you need to be clearheaded but, if you are in such pain and distress, you won't be clearheaded anyway. I know when I first started taking opiates, my doc had me refrain from driving and work for a couple weeks until I was accomodated to how the drug made me feel.

Doc said I was a much worse driver in pain than on opiates and its true.

Welcome to the forums....again, I am sorry for the health journey you have endured and I hope you find solutions. Don't be afraid of opiates or other pain meds. I couldn't function without them.
Take care, Diandra

[pinkswede17]

Thanks for your reply.

Maybe that's something to think about, at least during my days off. But it's absolutely nothing I could take while working. I'm a doctor. I'd lose my license if I was practicing while taking opiates. They rarely do random drug screens and if mine came up positive, something negative would probably happen, even if it was prescribed and supervised and all that.

Glad it's been effective for you.