u/Grouchy_Attorney_450

I’ve had allot of people tell me now that my symptoms/pain triggers are abnormal for ON, so I would like to hear from others, please don’t post paragraphs, try keep it short and simple

- pain worsened by noise, the louder, the more constant, the worse it is e.g. the TV on too loud, a loud vehicle going past, a door slamming etc

- concentration of any kind: talking for too long with someone, messaging for too long with someone, driving, gaming, whatever. My pain spikes from concentrating which eventually results in massive pain and then a migraine attack with ice pick pain, which then renders me completely disabled for several days

Those of you that have had an extensive occipital decompression, how long did you notice before your original pain went away? I’m a few days out and I still feel mine on my scalp + surgical pain

When I'm on 175mg of pregabln, my pudendal pain/neuralgia is way down but my occipital nerves are firing away all around my head like electricity, hyperactive
And when I go down to 150mg the nerves in my head calm down to baseline, but my pudendal pain/neuralgia is extreme.. I can barely walk
If I'm on 175mg with the electricity feeling in my head, will that affect the outcome/success of my occipital decompression surgery at all? (I have a 13 hour flight beforehand)

Nobody seems to have an answer for me

Hi guys, I’m currently taking pregabalin, mostly for my pudendal neuralgia/pelvic floor pain. I'm currently on 175mg which lowers my pudendal pain by quite a bit but unfortunately exacerbates my occipital pain I presume due to different nerve area sensitivities to the drug, hyperactivating the occipitals, it feels like a jellyfish is sitting on my head and stinging away all different parts of my head throughout the day. It's manageable but unpleasant.

I'm wondering if I should drop my dose now to 150mg where my pudendal neuralgia pain rises by quite a bit and effects walking, sleep etc, but my occipital pain goes back to baseline regular, non-stinging pain that I've had for 2.5 years.
Would staying on 175mg with the hyperactive "jellyfish stinging feeling" in my occipital/head effect the outcome of the decompression surgery at all?? (I’m having decompression surgery in 10 days overseas with a very long flight) Meaning, I should drop to 150mg?..
Or would it make no difference to surgical outcome/ success?

Thanks

Hi guys, I’m currently taking pregabalin, mostly for my pudendal neuralgia/pelvic floor pain. I'm currently on 175mg which lowers my pudendal pain by quite a bit but unfortunately exacerbates my occipital pain I presume due to different nerve area sensitivities to the drug, hyperactivating the occipitals, it feels like a jellyfish is sitting on my head and stinging away all different parts of my head throughout the day. It's manageable but unpleasant.

I'm wondering if I should drop my dose now to 150mg where my pudendal neuralgia pain rises by quite a bit and effects walking, sleep etc, but my occipital pain goes back to baseline regular, non-stinging pain that I've had for 2.5 years.
Would staying on 175mg with the hyperactive "jellyfish stinging feeling" in my occipital/head effect the outcome of the decompression surgery at all?? (I’m having decompression surgery in 10 days overseas with a very long flight) Meaning, I should drop to 150mg?..
Or would it make no difference to surgical outcome/ success?

Thanks

Hi guys, I’m currently taking pregabalin, mostly for my pudendal neuralgia/pelvic floor pain. I'm currently on 175mg which lowers my pudendal pain by quite a bit but unfortunately exacerbates my occipital pain I presume due to different nerve area sensitivities to the drug, hyperactivating the occipitals, it feels like a jellyfish is sitting on my head and stinging away all different parts of my head throughout the day. It's manageable but unpleasant.

I'm wondering if I should drop my dose now to 150mg where my pudendal neuralgia pain rises by quite a bit and effects walking, sleep etc, but my occipital pain goes back to baseline regular, non-stinging pain that I've had for 2.5 years.
Would staying on 175mg with the hyperactive "jellyfish stinging feeling" in my occipital/head effect the outcome of the decompression surgery at all?? (I’m having decompression surgery in 10 days overseas with a very long flight) Meaning, I should drop to 150mg?..
Or would it make no difference to surgical outcome/ success?

Thanks

So for my occipital decompression surgery in a couple of weeks in San Francisco, I’m needing to bring meds like oxycodone, morphine, pregabalin and lorazepam, to survive the trip. (I am not living in the US)

I’ve got printed and signed scripts for all of these medications from my GP, I also have a letter from my gp describing my condition and why I need all of these medications and that I would not be able to manage the trip without them.

Im also getting a letter soon from the surgeon in the states as to my condition and why I’m coming to the US for the surgery etc. Being that all of these are controlled substances, I’m wondering if all this will be enough or will they still try to take them off me?

So for my occipital decompression surgery in a couple of weeks in San Francisco, I’m needing to bring meds like oxycodone, morphine, pregabalin and lorazepam, to survive the trip.

I’ve got printed and signed scripts for all of these medications from my GP, I also have a letter from my gp describing my condition and why I need all of these medications and that I would not be able to manage the trip without them.

Im also getting a letter soon from the surgeon in the states as to my condition and why I’m coming to the US for the surgery etc. Being that all of these are controlled substances, I’m wondering if all this will be enough or will they still try to take them off me?

Hi guys,
What options do you guys have for this? Physio? Pudendal decompression surgery? What else is there?
Also if anyone has found relief from either of those two I listed, please let me know your experiences below, I’d love to hear them

I don’t wanna hear a damn word from sad sacks telling me there’s no hope etc, so fk right off with that, thanks

Hi guys, I’ll try make this brief
I’ve had severe testicular pain post epididymitis 2 months ago, which was resolved in a week of antibiotics, I had the urologist inject my spermatic cord in my scrotum 3 days ago now with a mix of steroids (kenacort a-10 1mg per side) and a local anaesthetic. The local worked for about 3 hours but now I am still in really bad pain and discomfort 3 days later and am wondering how long I should expect the steroid to start helping with reducing the pain??

(No it’s not torsion, ultrasound shows no issues, bloods and urine come back perfectly fine, I have also remained abstinent for 3 weeks now)

Male, 29yo, Caucasian, currently taking 125mg pregabalin every night as of the last couple weeks, I take oxycodone and ibuprofen for the pain which is 9/10 when not medicated for)

Hi guys, I’ll try make this brief
I’ve had severe testicular pain post epididymitis 2 months ago, which was resolved in a week of antibiotics, I had the urologist inject my spermatic cord in my scrotum 3 days ago now with a mix of steroids (kenacort a-10 1mg per side) and a local anaesthetic. The local worked for about 3 hours but now I am still in really bad pain and discomfort 3 days later and am wondering how long I should expect the steroid to start helping with reducing the pain??

(No it’s not torsion, ultrasound shows no issues, bloods and urine come back perfectly fine, I have also remained abstinent for 3 weeks now)

Male, 29yo, Caucasian, currently taking 125mg pregabalin every night as of the last couple weeks, I take oxycodone and ibuprofen for the pain which is 9/10 when not medicated for)

Hi guys, sorry if this is not cancer related, I am just really struggling and need some advice… I’ll try make this brief
I’ve had severe testicular pain post epididymitis 2 months ago, which was resolved in a week of antibiotics, I had the urologist inject my spermatic cord in my scrotum 3 days ago now with a mix of steroids (kenacort a-10 1mg per side) and a local anaesthetic. The local worked for about 3 hours but now I am still in really bad pain and discomfort 3 days later and am wondering how long I should expect the steroid to start helping with reducing the pain??

(No it’s not torsion, ultrasound shows no issues, bloods and urine come back perfectly fine, I have also remained abstinent for 3 weeks now)

Male, 29yo, Caucasian, currently taking 125mg pregabalin every night as of the last couple weeks, I take oxycodone and ibuprofen for the pain which is 9/10 when not medicated for)

Hi guys, not exactly cancer related but I didn’t know where else to post for advice on this.. as it’s a testicular issue.. moderators please feel free to delete my post if this is not the right place to ask…

Long story short, after receiving oral sex about 6-8 weeks ago I woke up the next day with testicular pain, I’ve had epididymitis 3 times before so I knew that’s what it was (never had an std)
I took a week’s worth of doxycycline twice per day and the pain continued after that… a week later I then got a script from the doc for 2 weeks worth of doxycycline, and did that too, the pain continued. Important to note I was relieving myself every night during this time as I have a high sex drive and will wake up in the early hours of the morning if I don’t do this…

I went to the hospital about a week ago due to severe testicular pain, mostly in my left test and underneath/behind it, radiating down my leg. They did blood test, urine, and ultrasound and found no infection, no inflammation, nothing. They told me to “rest the area” and take pregabalin and other pain meds.

It has now been a week, with zero masterbation, an I feel the pain is worse, I’m having to take oxycodone just to sleep at night, and in the afternoons I’m struggling to walk due to the pain. I’m seeing a urologist next week, but for now I wonder what is wrong, have I caused chronic inflammation? (But none was seen on the ultrasound) or have I caused nerve damage by not resting the area while I had the epididymitis?

Will this go away on its own?? or will I need surgery etc, I’m already dealing with occipital neuralgia the last two years so I really can’t be dealing with another chronic health issue….

Hi everyone
I have been off and on Escitalopram “Lexapro” 10mg 3 times now in the last 3.5 years (currently off it) but I am thinking to go back on as I have developed a chronic pain condition and am having a real hard time sleeping as well as having a very negative mindset most days.

My question is, am I doing long term damage to my brain/seratonin receptors by coming on and eventually back off this drug for a 4th time?? just to help me get through this chronic pain, since I have come off and back on it 3 times in just a few short years, I worry that I’ll do irreversible damage to my brain when I want to come off again when this is all over

Thank you

Hi everyone
I have been off and on Escitalopram “Lexapro” 10mg 3 times now in the last 3.5 years (currently off it) but I am thinking to go back on as I have developed a chronic pain condition and am having a real hard time sleeping as well as having a very negative mindset most days.

My question is, am I doing long term damage to my brain/seratonin receptors by coming on and eventually back off this drug for a 4th time?? just to help me get through this chronic pain, since I have come off and back on it 3 times in just a few short years, I worry that I’ll do irreversible damage to my brain when I want to come off again when this is all over

Thank you

Hi everyone
I have been off and on Escitalopram “Lexapro” 10mg 3 times now in the last 3.5 years (currently off it) but I am thinking to go back on as I have developed a chronic pain condition and am having a real hard time sleeping as well as having a very negative mindset most days.

My question is, am I doing long term damage to my brain/seratonin receptors by coming on and eventually back off this drug for a 4th time?? just to help me get through this chronic pain, since I have come off and back on it 3 times in just a few short years, I worry that I’ll do irreversible damage to my brain when I want to come off again when this is all over

Thank you

Hi everyone
I have been off and on Escitalopram “Lexapro” 10mg 3 times now in the last 3.5 years (currently off it) but I am thinking to go back on as I have developed a chronic pain condition and am having a real hard time sleeping as well as having a very negative mindset most days.

My question is, am I doing long term damage to my brain/seratonin receptors by coming on and eventually back off this drug for a 4th time?? just to help me get through this chronic pain, since I have come off and back on it 3 times in just a few short years, I worry that I’ll do irreversible damage to my brain when I want to come off again when this is all over

Thank you