I’m unfortunately posting again because my nerve pain came back months post blood patch

About 2 months ago was when I got my blood patch after my lumbar puncture a week and a half prior.

For a week after my BP I had bad nerve pain in my legs. I was on prednisone for a week after and it helped it subside until now.

So about 2 months after the blood patch my nerve pain in my legs has come back. It took a month and a half after my blood patch for my csf leak symptoms to finally go away.

It’s like I just can’t win. The nerve pain in my legs has come back with a vengeance. It’s the worst when I’m laying down. It’s like someone is trying to rip off my legs from my the soles of my feet to my low back. It’s like a bad stinging pain that you just want to stop because it’s so uncomfortable. Not only that, but it’ll feel like bugs are crawling all over my legs.

It started off small but then has got worse every single day to where I can’t even sit comfortably anymore without nerve pain. Only been a week since it came back and it’s hit hard. My lower back where I got my blood patch has also gotten sensitive and hurts.

Not only that, but just a few days ago I started to get headaches again while standing up. I was like ahh this has to just be a coincidence no way I’m leaking again. Well, it hasn’t stopped. I am also getting nauseas.

Nerve pain is the absolute worst because you know it can grow to absolutely ruin your life and there’s no stopping point for it. I don’t know what to do anymore. I’m obviously going to talk to my doctors but like Jesus Christ. I can’t deal with damage from my lumbar puncture and blood patch.

What I don’t understand is that gabapentin doesn’t help this nerve pain at all, but my Hydrocodone does. Gabapentin helps my other nerve pain but does zip for this. I don’t know why Hydrocodone would help this situation. Ahhhhhhh I just want to scream it’s never ending

ubermeisters,

I am dealing with chronic pain for the first time in my life. And it’s a similar pathology. Fuck it’s such a higher threshold of pain then I ever knew even existed…

I’ve got a herniated disc ( right sided sacrolumbar radiculitis) it turns out. X-rays show nothing, I need an MRI. insurance company says no MRI until at LEAST 6-8 weeks of PT. PT cant see me until middle of next month, and likely won’t do any good for me. Doctor have me gabapentin 'script he said is useless as “most people notice nothing but drowsiness” (thanks doc, really getting them kickbacks?). So I guess I get to experience the absolute worst pain of my entire existence, for the next 10-12 weeks minimum, deteriorate my already dwindling mental health, and risk calcification of the herniation (happened to family member)… this system is so fucked, how is this not fucking criminally negligent?

SpezCanLigmaBalls,
@SpezCanLigmaBalls@lemmy.world avatar

I’m assuming you’re in the US due to insurance forcing you to do PT? I’m so sorry. The health care system is incredibly fucked up.

Gabapentin does help me a bit. I have nerve pain down my neck through my collar bone and into my arms on both sides and down through the back of my shoulders and into my arms. The back of the shoulder nerve pain is due to the CSF leak from the spinal tap. The gabapentin helps with that.

Other than that, gabapentin doesn’t do anything. I’m taking 1800 mg a day. Instead of giving pain meds that help people they are throwing gabapentin at everybody now a days. It’s sad

ubermeisters,

Can’t have you abusing opiods, but we gotta sell ya something!!

SpezCanLigmaBalls,
@SpezCanLigmaBalls@lemmy.world avatar

What they don’t tell you about gabapentin is that the withdrawals are gnarly. Also, there is quite a bit of side effects. The only reason gabapentin isn’t controlled and Lyrica is, gabapentin take 3-4 hours to reach peak plasma levels while Lyrica is much faster

ubermeisters,

I am on day 3 of a single pill at night and I’ve not noticed anything so far, other than I’m having trouble waking up to alarms. Supposed to increase dose tomorrow, to an additional lu chime pill, but tbh why would I take a medicine that seems to be doing nothing, Nas withdrawal effects, and is said to worsen. Depression and compulsive behaviors? I’m thinking it’s not a smart idea for me.

From what I’ve read online, gabapentin needs to be regulated better because people are stacking it with opiods to get faster and stronger effects from opiods.

SpezCanLigmaBalls,
@SpezCanLigmaBalls@lemmy.world avatar

Gabapentin can take a couple weeks to take affect. It isn’t a couple day thing. So give it some time at first. What dose are you taking now and increasing it to?

ubermeisters,

300mg capsules, 1x/ day last 3 days, 2x/day for next 3 days, then 3x/day after until gone.

Doctor was very clear that “most people see no benefit so if the drowsiness is an issue don’t take them”.

Tldr; ramping up to 900mg/day

SpezCanLigmaBalls,
@SpezCanLigmaBalls@lemmy.world avatar

Ah okay I see. Yeah if you don’t have nerve pain don’t expect it to do anything. It doesn’t do anything for my leg nerve pain. Don’t touch it

ubermeisters,

Pretty sure the pain I’m experiencing is definitely nerve pain.

Pathology: unrelenting deep hollow pain sensation within my right hip and exterior side of right calf. Numbness of right foot plantar facea. And of course lower back pain/soreness. Said to be a result of a herniated disc somewhere above the area where this would technically qualify as “sciatica” (surgeon was pretty spicy about what a “blanket term sciatica has become” lol.

SpezCanLigmaBalls,
@SpezCanLigmaBalls@lemmy.world avatar

Well let me know if the gabapentin helps!

ubermeisters,

Will do. Also may ask Dr. and pharmacist both, why neither told me you need to not take an antacid within 2 hours of taking the capsuile, and nobody mentioned the recommended 7 day weening period I’m seeing elsewhere, even though i verbosely asked them both for exactly these types of precautionary information.

SpezCanLigmaBalls,
@SpezCanLigmaBalls@lemmy.world avatar

What’s up with the antacid? Never heard that and I’ve never had issues. Also, pretty sure it’s longer than a 7 day period. My pain mgt doc told me it’s a slow ween off and from what I’ve seen online some people do it over a month or more depending on dose

ubermeisters, (edited )

The antacid info came from the info packet along with the prescription from my local Safeway. The 7 day weening period is as per some app that my mom uses for checking medication information. Shes a medical professional, now professor, in a different but not unrelated field, so i trust her info. Please get your own info from your own trusted source! I will be sure to bring it up frankly with my Ortho Surgeon before stopping, I promise.

As i understand it, the antacid (being a calcium compound, generally) will render the gabapentin chemically inert (aka the medicine really really wants to bond with the antacid), since it is designed to “bind to the alpha2-delta site on calcium channels” in your nerves, According to www.ncbi.nlm.nih.gov/pmc/articles/PMC3114047/ …thanks GPT

So, my thesis above might not be accurate, but the info quoted below, is.

www.drugs.com/tips/gabapentin-patient-tips

May interact with some other medications including antacids, hydrocodone, morphine, and other drugs that cause sedation or dizziness. May also cause false-positive results on some urinary protein tests.

Do not take gabapentin at the same time as antacids such as Maalox or Gaviscon. Separate administration by at least two hours. Take exactly as directed by your doctor, do not increase or decrease the dose without his or her advice.

Common medications that may interact with gabapentin include: antacids, such as those containing aluminum and magnesium

SpezCanLigmaBalls,
@SpezCanLigmaBalls@lemmy.world avatar

Interesting. I personally haven’t noticed a difference whether I take antacids within that time frame. Taking it 3 times a day makes it hard to time antacids. ¯_(ツ)_/¯

ubermeisters,

Yeah, I dont think most antacids work via Al or Mg, so you’re good on that.

AFKBRBChocolate,

I’m sorry you’re going through that. For sure seeing a specialist is the thing to do - I hope they can diagnose and resolve it.

I’d it possible that the pain gabapentin helps is neuropathic and this new pain isn’t?

SpezCanLigmaBalls,
@SpezCanLigmaBalls@lemmy.world avatar

It’s weird because it’s 100% nerve pain but it’s like the origin of it whether it’s inflammation or something else is helped by the hydro. If it was straight neuropathic like my other stuff the gabapentin would help but it just doesn’t. It’s so weird. Not sure what the exact cause is that it would be helped by opiates

AFKBRBChocolate,

Well, I hope you find the answer, I know how frustrating it is to have pain and not know why. Good luck!

toasteecup,

I’m sorry to hear you’re suffering from that. Do you have an official diagnosis as to what’s causing your pain?

SpezCanLigmaBalls,
@SpezCanLigmaBalls@lemmy.world avatar

When it comes to this new nerve pain - no. It’s too new for me to even talk to doctors. I posted on multiple Facebook groups explaining in more detail and every comment told me it sounds like beginning symptoms of arachnoiditis. Every person told me I need to go get an IV steroid injection asap for inflammation. But, I’m getting a muscle biopsy Wednesday so I can’t.

When it comes to my normal pain - also no. We just know I had acute inflammation for a couple months that a methylprednisone injection took away. Since then I got an emg on my legs that showed muscles and nerves not working correctly. My body will randomly twitch when I’m relaxed. It can be a finger, my neck, or leg. Anywhere.

Due to emg and neurological symptoms I have been diagnosed with polyneuropathy. I have lots of muscle pain and nerve issues but we just do not know what damage happened during that period of inflammation. We just know stuff isn’t working correctly.

My body is also hyperreflexive. Especially my legs

My neurologist referred me to a musculoskeletal neurologist and that appointment isn’t till late November.

I have had MRIs of my spine and I do have 2 bulging discs and arthritis but that stuff just doesn’t explain everything happening

toasteecup,

I wouldn’t be so sure about the bugling discs. My best fern has fibromyalgia and had been having to do aassive amount of self research and self advocacy with her doctors. She ends up finding out some it’s not uncommon for fibro to be related to spinal disc separation.

She got an MRI after finding a sympathetic doctor and low and behold she has some significant spinal gaps. They will be replacing the discs and from other fibro people once they’ve had it done it was like they felt just inexplicably better.

Different proven different solution, but we don’t truly understand the level of impact our nerves can have on our bodies. Worth doing some digging and see what you find. Good luck!

SpezCanLigmaBalls,
@SpezCanLigmaBalls@lemmy.world avatar

That’s really interesting! Glad they found that doc. Unfortunately due to my emg and bodily twitching it is highly unlikely my pain is due to fibro

toasteecup,

Oh I fully agree, definitely doesn’t sound like fibro but that was more of an anecdote suggesting that the bugling discs might be worth looking into as a potential cause. Sorry I wasn’t clear

SpezCanLigmaBalls,
@SpezCanLigmaBalls@lemmy.world avatar

No worries! It’s just the origin of my issues that has doctors incredibly confused. I had bulging discs prior to when this started a year ago. It all started with TMJ and escalated oddly. One of em is pretty bad but I do wonder how those discs could have played a role in all this

toasteecup,

My personal theory based off of a lack of medical knowledge and solely logic is this, we don’t truly understand nerves beyond them conveying information using some poorly understood electrochemical process.

So it wouldn’t surprise me if issues that we seen related to pain could be due to some stressor affecting nerves and the chronic pain being the body’s only way of saying “hey human! We got problems, you gotta fix this!”.

With my best fern and her fibro it could very well be that spinal gaps result in fibro symptoms and it could very well be that spinal bugles are resulting in your issues.

Again I need to stress I’m not a professional doctor but I am a professional problem solver (it engineer) so when I see a data point and one looks kinda similar I call it out and wonder if there’s something more going on.

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