What do you do? I’m on day 5 of attack after attack. They last anywhere from 1-20 minutes, sometimes no break in between. I’ve been to er twice. They give me shot of dilaudid which just makes me sleep. They started me on gabapentin last night. Not helping.
I can’t do this anymore. What meds do I ask for???
I forgot to add, I take 400 mg of carbamazepine Er twice daily. Just started that on 18th.
From what I read in medical literature and patient discussions, it's likely that you'll need to be on your 400 mg twice daily for a week or so, before you can be tapered up further. There seems to be no medical evidence for doses of Carbamazepine above 1200 mg/day (three divided doses). If Carbamazepine isn't working for you, then you might be tried on Trileptal or have another med like Amitriptyline or Baclofen added to the Carbamazepine. Be aware that all of these meds can have significant side effects.
Regards, Red
They upped my tegretol 400 MG xl to 3 times a day. That seems to be helping now. First day I haven't had an attack yet!! During one of my ER visits they started me on Gabapentin too and I am now taking 600 MG twice a day. I think the Carbamazepine is finally working.
Today is my first day back at work and I had Ensure for breakfast cause I have been having a hard time eating. Since that didn't give me an attack, I had small plate of leftovers from my clients T-day meal. No attack yet. BUT...very tired and loopy. My gait is off a bit too, feel like I am drunk at times.
BUT...the pain is WAY down so I'll take it!!
Mr. Red what do you suggest to take to get the pain weigh down instead of meds???
*way
My phone obviously doesn’t know how to spell when I voice the conversation from the microphone
Pamela, I'm really not professionally qualified to "suggest" treatments, though I can perhaps tell you what other people have reported trying on their own or with the assistance of physicians. Anti-seizure or Try Cyclic Antidepressant medication is without a doubt the main treatment used for reducing facial pain. I haven't heard of any consistently reliable alternatives, though many have been tried. Some people, some of the time have reported improvements from Botox injections, Sphenopalatine Nerve blocks, aroma therapy, acupuncture, cervical chiropractic, low-inflammation diets, Vitamin B-12, and Chinese herbal medicine. Some things have been tried that I have heard very bad things about. Among these I include TENS devices, low-power lasers, Ayvurdetic Medicine, and trigger-point massage sometimes called "fascial release therapy". So in the "alternatives to meds" column you would be very well advised to work with a mainstream physician to monitor your progress and ensure that you don't get involved with a dangerous quack remedy that can actively harm you.
Your best bet for an introduction to these alternatives is likely to be "Striking Back, The Trigeminal Neuralgia Handbook" at Amazon. The authors are a former patient who had a successful MVD, and Dr. Ken Casey who is a past President of the Medical Advisory Board for the US TN Association. The book is well written and understandable. It's also extensively referenced. As a fair disclosure, I wrote the Web Resources appendix for the first Edition of this book, though I have not contributed to the subsequent editions.
Regards, Red
Thanks!
I haven’t been on the site since my message I just got your reply today!
I don’t want meds. I will look into the Natural Things.
So these devices, lasers, trigger massages, and release therapies are bad?
Pamela, I rally can’t recommend something “instead of meds”. At least not if you are hoping for a modality that is generally accepted as reliable and effective. As for devices, lasers, trigger massages and release therapies: from what I’ve observed, various peripheral stimulators, trigger massage and trigger point release seem to help a few people some of the time. But they don’t help a majority and in many cases the positive benefits are temporary. Concerning cold laser therapy, I can only point out that there isn’t a scrap of medical evidence that it works, and there are quite a number of reports floating around the net that for TN is doesn’t work – and is outrageously expensive.
My two bits for whatever they’re worth.