Nerve blocks work for anybody?
So, I’ve been suffering from ear & face pain for 1 1/2 years. Just a 2 days ago I was actually, finally diagnosed with Trigeminal Neuralgia by my pain mgmt doctor! This was a huge relief to me to finally have a doctor look at me and tell me understands what I have! So- his first suggestions ( already on gabapentin, amitryptilene) for stronger relief were lidocaine patches ( 2 nights, no help yet) and a trigeminal nerve block. But I haven’t seen hardly any discussion on nerve blocks on here. Anybody have feedback? Worth it? Almost Anything is worth it at this point but I want to really don’t want to waste more time if this isn’t going to help. Thanks in advance for reading and writing!!
Kerry -- try running the term "Block" in the search window at top right. You'll get 140+ pages of hits on the term, many of them pertinent to nerve block as such. There's been quite a bit of discussion of outcomes from several different types of nerve block..
You said you were diagnosed with trigeminal neuralgia but you posted this question in the type 2 trigeminal neuralgia group. Not sure if nerve block has helped any type 2s but I could be wrong ? Of course it could have helped the mixed ones who have TN and TN2
It has been my unfortunate experience with the pain management dr.s I've worked with that they ALWAYS want you to have a nerve block, or two, or three, etc. For me, I have had 3 in the past year alone with NO pain relief whatsoever. My husband works in the medical field & told me the pain mgmt. dr.s make a HUGE PROFIT on their preferred treatment with "nerve blocks" for just about any nerve in the body! Not trying to discourage you Kerry, more like wanting to warn you not to get your hopes up too much with a nerve block. I've spent several thousand dollars over the past 4 yrs. on "blocks" with the only relief being the "numbing medicine" they inject 1st to lower the pain of the "blocking agent" that is injected 2nd. This lasts for only a brief time. Maybe your body will respond better than most. Hope you can find some relief!
Sorry, type II is what I have. Thanks Red, didn’t think of that and thank you Lori for sharing. I def am going to research more before going ahead with.
Kerry,
I have TN1 and TN2 and occipital neuralgia. I have had a handful of Occipital nerve blocks and trigger point injections in my face and side of my head. I have had pain relief from some of them yet some of them have made things worse. Usually, they help relieve the pain in my eye. When they have helped, it seems that the interruption in pain that the numbing medicine gives me, (even though it may only be for a few hours) helps to settle things down. I also go to a pain management clinic, but I have not had the same kind of experience as Lori has had. My doc is very good about discussing all options for pain management, not just nerve blocks and she is not at all pushy about getting the blocks. So I think it just depends of the doc and the clinic.
I have not had a trigeminal nerve block yet as I was trying to get pregnant and the doctor uses x-ray to guide the needle. I have been having a really bad flare-up the last few months. I have an appt. the end of the month and I am going to talk to my doc about getting a trigeminal nerve block done to see if it will settle things down. If you decide to get one done, I would love to hear about your experience and if it helps.
My neurologist says its for diagnosing. I have one this week on the occipital nerve, I'll post then
@ Karen - I live in KS & pain management clinics here have been forced to go the route of nerve blocks because of crack downs from the feds (I am a former fed myself) on using medications to relieve severe pain such as that which comes from TN I & TN II - I have both now. So it is not necessarily the doctor or the clinic in this state - they are closely monitoring ALL pain management clinics here & have enacted new laws & regulations as to what can even be prescribed if medication is what your dr. & you decide is the best option, & heaven help you if that is the case...it's bad...I have tried other options such as accupuncture, anti-seizure meds & the traditional TN meds without relief, even had an MVD done 1 1/2 yrs. ago which failed & left me with some hearing & vision loss, & now pain worse, in all 3 branches & constant - so I think every case of TN is different. @ thermotronica - there is a block used to diagnose occipital neuralgia, & a totally different block used to treat ON. I've had both. Again, only with a few hours of any type of pain relief. That is why Dr. Ben Carson & Dr. Michael Lim agreed to take my case & I fly up to see them at Johns Hopkins this week. Dr. Carson is retiring in June but has reviewed my records & will consult & Dr. Lim will be my treating neurosurgeon. He will be overseeing my case even if they decide a surgical procedure is not an option for me. I can not give up hope that someone, hopefully these two dr.s who specialize in research & treatment of TN can help bring the pain level down. But I will say again, it seems to me that each TN case is different responds to treatments, meds & even surgery differently. My hope is for all of us to find relief! Best regards to each of you! :)
Are you taking any Tegretol (Carbamzapine)? It is the most helpful for me even over the gabapentin and amitriptilene.
@Brain burn - I tried Tegretol and lymphnodes swelled in neck so doc took me off. So still on the medicine train . . . Ami makes me too drowsy, on 400 Gaba. Was researching and am thinking of trying acupuncture and B12.
Lori,
I completely agree with you that each case can be very different and just because something works for one person may not work for someone else. It has helped me seeing what others have tried and what has worked or not worked.
I hate that the govt has gotten so involved in medical care. Some people get relief from meds, including opiates and it is very upsetting to see how it is getting harder and harder for people like us who have chronic pain conditions to get the meds that help.
Hope your appt at Johns Hopkins is helpful!
Kerry,
I couldn't take Tegretol because of the side effects but did, at one point, get relief from Trileptal which is very close to Tegretol. I am very interested to see if the B12 shots help. One of my docs suggested acupuncture but my insurance doesn't cover it and there is no one near by that I could afford. Hope these help you!
@ Karen - I live in KS & pain management clinics here have been forced to go the route of nerve blocks because of crack downs from the feds (I am a former fed myself) on using medications to relieve severe pain such as that which comes from TN I & TN II - I have both now. So it is not necessarily the doctor or the clinic in this state - they are closely monitoring ALL pain management clinics here & have enacted new laws & regulations as to what can even be prescribed if medication is what your dr. & you decide is the best option, & heaven help you if that is the case...it's bad...I have tried other options such as accupuncture, anti-seizure meds & the traditional TN meds without relief, even had an MVD done 1 1/2 yrs. ago which failed & left me with some hearing & vision loss, & now pain worse, in all 3 branches & constant - so I think every case of TN is different. @ thermotronica - there is a block used to diagnose occipital neuralgia, & a totally different block used to treat ON. I've had both. Again, only with a few hours of any type of pain relief. That is why Dr. Ben Carson & Dr. Michael Lim agreed to take my case & I fly up to see them at Johns Hopkins this week. Dr. Carson is retiring in June but has reviewed my records & will consult & Dr. Lim will be my treating neurosurgeon. He will be overseeing my case even if they decide a surgical procedure is not an option for me. I can not give up hope that someone, hopefully these two dr.s who specialize in research & treatment of TN can help bring the pain level down. But I will say again, it seems to me that each TN case is different responds to treatments, meds & even surgery differently. My hope is for all of us to find relief! Best regards to each of you! :)
Thanks! I will see if trileptal is an option. And will keep you posted on acupuncture or B12. Crossing my fingers! Because I read your part about opiates. And I feel the same way, so frustrated! I take Percocet 7.5 daily and they told me to only take as needed, not every 6 hours. I said I actually still in pain after I take it, it is just easier to handle/ deal with, and the meds wear of well before I take another. They just don’t get it, my PCP’s nurse anyway! If I wanted to stay on pain meds I wouldn’t be goin thru everything else to try to relieve myself of pain, and take these horrible meds!
Karen & Kerry..I didn't mean to come across so negative...that is not my nature or my heart at all...I'm so sorry if I sounded that way! :/ It's this horrific condition that has at times, brought out a new side of me that I hate - the constant pain, getting so sick from meds that don't work, disappointment from the MVD that failed & caused so much more damage, nerve blocks that have failed as well for me...& the only relief I get is from Fioracet - it takes the pain level down a few notches for which I am very thankful BUT pain management doesn't like to prescribe any controlled substances (even as mild as Fioracet) because of the government creating all of these new laws & regulations...so very discouraging...
But dear ones - PLEASE don't give up! We all just keep trying new things until something gives relief & as we've said, different things seem to help different people. Again, I'm so sorry if I have been discouraging to anyone! I want to be an ENCOURAGER to all of us in this battle!!!
Karen, thank you for your kind wishes as I travel to Johns Hopkins Wed. - Fri., hoping to find some new options that may be available to help curb the pain...will sure be happy to share with you anything new! :) I'm hoping to spend a few hours with the TN Research Team/Dept. while I'm there as well to see what breakthroughs are on the horizon for us!
Kerry, keep us posted on how your acupunture goes as well as the B12! Sure hope you get some relief! :) I'm so thankful we have this support group to be able to travel this journey together! Love & prayers always ~ Lori
OMG Lori no way did you come across negative. If anyone can understand what this does to your emotions-it's us. I cry almost daily about what a moody, parent I have become to my little ones and pray this doesn't hurt them as much as it hurts me. I am so hopeful for you-Good luck at Hopkins and Please keep us posted of everything!!
I do plan on trying the nerve block, that's just the hope in me that won't die, that something will work. No matter the thousands of dollars we've spent as well, hopefully I'll get smarter some time. But still waiting on insurance to approve. Did you have insurance Lori? Was it still really expensive?
Thanks again for your experience! Each one is helpful!
Lori (Lefty) said:
Karen & Kerry..I didn't mean to come across so negative...that is not my nature or my heart at all...I'm so sorry if I sounded that way! :/ It's this horrific condition that has at times, brought out a new side of me that I hate - the constant pain, getting so sick from meds that don't work, disappointment from the MVD that failed & caused so much more damage, nerve blocks that have failed as well for me...& the only relief I get is from Fioracet - it takes the pain level down a few notches for which I am very thankful BUT pain management doesn't like to prescribe any controlled substances (even as mild as Fioracet) because of the government creating all of these new laws & regulations...so very discouraging...
But dear ones - PLEASE don't give up! We all just keep trying new things until something gives relief & as we've said, different things seem to help different people. Again, I'm so sorry if I have been discouraging to anyone! I want to be an ENCOURAGER to all of us in this battle!!!
Karen, thank you for your kind wishes as I travel to Johns Hopkins Wed. - Fri., hoping to find some new options that may be available to help curb the pain...will sure be happy to share with you anything new! :) I'm hoping to spend a few hours with the TN Research Team/Dept. while I'm there as well to see what breakthroughs are on the horizon for us!
Kerry, keep us posted on how your acupunture goes as well as the B12! Sure hope you get some relief! :) I'm so thankful we have this support group to be able to travel this journey together! Love & prayers always ~ Lori
Lori, I am so excited to hear about your impending trip to see such wonderful doctors. I wish you well and I too would love to hear how things went and what they said.