Good afternoon everyone. I have Occipital/Trigeminal Neuralgia and have had a variety of treatments for the past 7 years. Most recently a nerve block which went wrong and left me in worse pain.
My last option is a lidocaine infusion which I am waiting for. I take Pregablin/codeine/migraine meds etc
If anyone has any info/suggestions/advice I would be very grateful.
I wish everyone pain free days and peaceful nights.
Thank you.
Armao
Hi, I suffered with it years ago. Worst pain ever in my life! I was treated with Tegratol and tramadol, I also had Bell’s palsy on the other side at the same time. Hope you find something that helps
Where is your pain at?
Hi , I’m not sure what you are asking?! Sorry!
My pain is Occipital/Trigeminal Neuralgia so it involves the base of my skull where the pain begins and it travels across my head , down my face and across the right side of my face. It’s a burning, searing throbbing pain which can just shoot across my whole head, burning and is pretty much all the time. I had a nerve block which made it worse for 3 weeks. I just don’t know whether it’s worth trying an infusion. I don’t want to make it worse again.
Maybe I should just stick to pain medication?
I am female, 73yrs … had it for 7 years.
Maybe time to give up trying.?
Armao
I suffer with severe chronic pain in which have been under the care of the pain management dept at rhe hospital . Have had lidocaine twice in the past however my consultant did confirm that they are not giving lidocaine any longer
Good morning and thank you for the reply.
My consultant has agreed to the lidocaine infusion so my problem is , should I go ahead or not? Do they work? Are there side effects? I believe the only people who can help me are those who have experienced the treatment? Can you advise me of your experience?
Armao
I did have it twice and it did not do much for my pain. No side effects I could think of. The first time I did have it my consultant did explain to my husband it may knock me our until the following day. May I ask where you do live, thanks
Dear armeo
I have sorry to read about your struggles with your ongoing pain. There a few resources that we have on our website that may be of help to you. The inks are below, if you click on them they should take you to the relevant pages.
painconcern.org.uk/neuropat...
painconcern.org.uk/product/...
The following links will take you the episode list of Pain Concern podcasts - Airing Pain and the list of the quarterly magazine Pain Matters. Both resources have information that will be relevant for you.
painconcern.org.uk/airing-p...
painconcern.org.uk/product-...
I hope this helps you
Pain Concern
I had a friend who had severe facial pain from trigeminal neuralgia.She was prescribed,Lyrica ,Neurontin,high doses of tegretol all to no avail.With 50 yrs of nursing experience I researched cures.I found a Dr Manuel Esperanca who had great success with prescribing weekly high doses of vitamin B12 injections . I would also suggest having a dental checkup as a decaying tooth can be the cause.I could not convince my friends Dr to treat her even though she was deficient in vit b12 .I commenced her on 5mg methyl sublinguals thankfully the pain started to subside.Another midwife colleague had TN she found b12 sublinguals to be effective.
Although I'm not pain free, the use of Fentanyl patches have made a massive improvement to my daily life. Maybe you could ask your GP if they would help you.
At one stage in hospital, i was having a spinal cord Stimulator removed, and unfortunately, during the process, they knicked the spinal column creating holes causing the spinal fluid to leak out. As the fluid also surrounds the brain, i was left with nothing to cushion my brain which caused massive headaches and sensitivity to light. I was given pure caffeine to drink and it was also injected into my veins. I was told to drink coke and coffee and it actually helped somewhat. Even today I still suffer with bad headaches and I take Pro Plus caffeine tablets which help tremendously.
Again perhaps this is something you could speak to you GP about.
Live happy.
Jane.
hiya
i now have botox injections every 3 months on the dot. have they offered you these? if not i would ask. the lidocaine might work at first like a nerve block but botox you have 31 injections if it's for migraine?! and it's done for another 12 weeks. it's not immediate or nice having it but you get used to it and it becomes your saviour!
good luck
Hi there, thank you so much for your reply.
I find this very interesting as I used to have Botox injections although not that many(?)
Unfortunately they didn’t help me and incidentally I was amazed that you had them so regularly? Did you get them from a Pain Clinic?? I’m so glad they help you with your pain. I’m just waiting to try this infusion but still unsure about it…
Still, nothing ventured nothing gained!
Good luck to you and I wish you pain free days..
Armao
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