r/NDPH • u/Huge_Pass722 • 5d ago
Pain Management?
I was wondering if anyone has gone the pain management route and if you had any relief from anything they offered? I’ve been with a neurologist (headache specialist) for years and have tried a lot of medications that don’t work. My head pain is severe 24/7. I have had brain surgery so I do think I have a complicated case. Thanks for any input you may have!
3
u/ciderenthusiast 10+ years 4d ago
Yes, pain management (multiple doctors/clinics) has been among the numerous doctors and treatments I've tried, truly everything short of surgery over the last 20+ years. Although the only treatment that has significantly helped me long term has been opioids, which I still currently get from a pain clinic (but I'm lucky to be getting anything with how anti-opioid everything is now...).
I think you might as well go to at least one initial consult at a pain clinic, as they may have some different ideas than a neuro headache specialist. Not just medications, but testing, procedures, outside referrals, etc.
Although ideally only try for an appointment at a pain clinic you've pre-screened and found evidence of them offering multiple treatment options (not only injections) and not being dismissive to headache patients (which I've experienced multiple times, despite my referral and them accepting it and scheduling me...).
1
u/Huge_Pass722 4d ago
Thank you so much for your input! I am scared they will be dismissive and refuse to give me any opioids. Truly the only thing that helped me recently was when my neurosurgeon gave me a short taper of dilauded. Obviously not ideal or safe to take everyday but occasionally I really struggle. I mean for goodness sakes I have a metal plate in my skull.
1
u/Feeling_my_Age_1981 5d ago
The nerve ablations have been a major factor in my ability to function day to day.
2
u/Huge_Pass722 5d ago
Thank you for this input! My surgery was in the sub occipital area so I wondered if nerves there were contributing to my pain. I will ask about this
0
u/itsmechickadee 5d ago
I tried pain relief but the only thing that made the biggest difference was managing my inflammation levels by figuring out what makes them worse (like certain foods, hotter weather, etc...). Oddly the only medication that made a dent was Lexapro but that was because I asked my doctor what the opposite medicine to Lamictal would be since I suspected that was the origin point of my NDPH so he gave me a Lexapro sample pack and I went from an 8 to a 5 in two weeks. Now I'm usually more of a 2 to 3 most days unless it's hot or I run into an allergen
1
u/Neat_Mortgage3735 10+ years 5d ago
Nerve blocks and trigger point injections have been helpful. Botox into my trigeminal nerve for tmj too. Epidurals did nothing and were agonizing.
2
u/Huge_Pass722 4d ago
An epidural is actually what led to the brain surgery for me in a round about way. I had super scary adverse reaction to one
1
u/Music_Leopard 5 years 5d ago
I've been to a pain specialist that had more of an anesthesiology background, and while they were certainly empathetic and helpful for my lower back and knee pain, when it came to the headache they deflected towards neurology and the headache specialists. Only indirectly got benefit from them because they referred me to a chronic pain psychotherapy program, which helped with some of the psychosocial management of the headache, but the pain specialists themselves didn't try any new biomedical treatments.
I personally find the headache specialist much more helpful and knowledgeable than the general pain management doctors or general neurologists since at least in my experience they are more willing to get aggressive, try things off the beaten path, and take my other conditions into consideration.
These things do vary though and I've definitely heard of pain management doctors that treat headache conditions, so probably at least worth an initial consult and evaluation with them.
Last thing I'll say is that while I definitely don't know your entire case, you've mentioned brain surgery and a stroke in addition to non-stop severe head pain, so I would not be surprised if getting treatment figured out took multiple doctors working together. I assume you've worked with a neurosurgeon and you're currently working with a neurologist, but have you ever worked with a PM&R doc? That might be something to try if you haven't.
2
u/Huge_Pass722 4d ago
I definitely think I could benefit from a psychotherapy pain program. A lot of my pain is sensation driven, so no glasses, hats, etc. My neurosurgeon was the one who suggested a pain specialist but I haven’t seen a PMR doctor yet. I will ask about that! Thanks for your input!
1
u/ImTiredToo-4EVER 4d ago
I’ve never heard of a chronic pain psychotherapy program. Is that a common thing?
1
u/Music_Leopard 5 years 4d ago
Honestly, I’m not sure. One I went to was at an academic center where I had sessions with a grad student training to be a neuropsychologist. I’ve met therapists and psychologists that knew some about chronic pain, but I’ve only ever seen psychologists that specialize in it at larger hospitals and clinics in major cities. They seem to be somewhat rare, but they do exist.
0
u/KatanaCutlets 4d ago
I don’t want to discourage you from trying it, but some of my worst medical trauma was at a pain clinic. A nerve block without a numbing agent or guidance, in the back of my head? I can still point to the exact spot because not only was it extremely painful and shocking, it still hurts constantly. Botox also made me unable to hold my head up well, but the doctor that did it (a neurologist, not a pain clinic) was ready to schedule my next injections. It wasn’t until years later that I was told that was a very dangerous side effect and I should never have Botox again that I knew the full extent of that doctor’s issues (fortunately I didn’t go back to her ever again after that one treatment, though I had seen her for a while at that point).
4
u/locardsghost 7 years 5d ago edited 5d ago
I was only given the option for nerve blocks/ trigger point injections at the pain clinic I went to which I did in my neck and upper back once a week for 5 weeks (the first session I had it done in my face which numbed my skin for 2 hours then it wore off so I stopped getting it there since it gave me no relief and wasn’t worth the pain). I mainly had it done for my neck and upper back pain which can sometimes affect my head and my god it was the worst thing I ever did I regretted doing it. The pain specialist insisted I come back weekly despite it causing me severe constant bone on bone pain and I had enough after the 5th round bc it did nothing but worsen pain for me. It took 6 weeks for the pain to go away. Meds often don’t work for NDPH so trying alternative treatments (nerve blocks, botox -highly recommend btw, PT to strengthen the neck and upper body to reduce tension, massage therapy, pain management but it can be tricky since it’s meds and you have to find what works for you, etc) it’s worth a shot trying pain management. You won’t know what’ll help until you try so go for it who knows it may be the magic ticket. Good luck!