What more can I do? After a remission from mid January to mid May my attacks have gotten worse. Especially the last 4 days (with last night and this morning the worst). In tears as I write (trying not to be dramatic, but it’s intense)
I’m on neurontin 3600 mg, lamitical 200 mg, lidocaine patches and hydrocodone 10mg.
Had a horrible reaction to tegretol. Lidocaine patches provide little relief, but cannot reach pain deep in my ear.
Now pain is heading toward my eye and this is new because pain has always gone/been down my jawline.
Scared I’m medically (medicine) maxed out and feeling so worried about what that means. Now in crisis I am not even sure what can be done.
At home with my very active toddler and really avoiding letting him see me cry. I honestly hate this disease and feel I’ve done so much better handling this pain until today.
I know you may not be able to help, but I appreciate you listening.
Can you see a doctor asap? They may be able to suggest some other meds. I have been on pregabalin for a while and it has worked quite well. Have you considered surgery?
I have an appt shortly. Just not sure what more can be done. Haven’t tried lyrica mainly due to expense, but I will suggest it.
I just hate how I used to do so much more with my kids and I honestly give an effort to do what I can. I see their disappointment. I don’t want to scare my kids either. I have cries in their presence (because it’s okay to cry) but don’t make it a typical thing.
I do supposed its time to revisit my surgical options. Hoping my appt goes well. Just hoping.
oh sweetie-- is there anyone you can call to watch your baby today? this is so hard...you might want to call and ask your doc for Tramadol it works for this pain hydrocodone does not usually work. I wonder if you could get relief from a PNS unit-- peripheral nerve stimulation. There is a group on here I think. That would take awhile though.
It sounds like things are fired up and need something to derail it-- maybge a trip to the er with some heavy duty iv meds could stop the cycle...here are a few suggestions I found on this site. I keep them in a folder on my pc so I have the info available if i get in crisis
-- fentanal patch at ER with 2 mgs. of diludid IV
--1 ketorolac ( 3 times a day if i needed) Treatment should be started with ketorolac injection. The total duration of therapy should not exceed 5 days because of the potential for gastrointestinal bleeding and other side effects. The recommended adult intravenous single dose is 15 to 60 mg. Multiple intravenous doses of 15 or 30 mg every 6 hours, not to exceed 60 or 120 mg a day, also may be used. Following intravenous therapy, the recommended dose is one or two tablets initially followed by 1 tablet every 4-6 hours, not to exceed 40 mg daily.
Maybe you could email this to your doc and he could call the er in advance...
Consider acupuncture. I has helped by tremendously. It is not a quick fix. Took around 10 visits to show real positive results. Some hospitals provide this (ie Cleveland Clinic). My insurance did not cover this. I did 2 private sessions $100/ea and now am doing group acupuncture once a week @ $40. Still expensive but has helped me very much. I am also trying upper cervical treatments with a Chiropractor. Nothing to report yet on that but have only been doing it for two weeks.
also watch this video. There is something in it about an injection you can get to relive the pain temporary. It also explain the disease and some treatment options. It help me out a lot in understanding somewhat.
Don't give up and there are people who care and can help you and you'll find them. I know how facial pain makes you feel and act like another person, but that's not you. I know how the feeling of hopelessness and I've spent nights crying. You have to be strong, which I know is extremely difficult when you're in so much pain. I really hope you find help and feel better. I wish I could give you more, but all I gave to give is my support.
Kismet- I am so sorry you are in a crisis right now. Lyrica did help me out once when I was in a bad way. Currently though I am taking gabapentin and baclofen. I didn't think it would work, but it really is helping.
As for your situation right now, I know it can be expensive, but sometimes a trip to the ER to stop a bad pain cycle is needed. Granted it depends on the person. ER visits usually calm things down a bit for me. I am with Tacocat.
As your name might suggest, you feel this is your lot in life, but I believe if we band together on here, put our minds together, and support each other we can get through this!! We also need to fight for ourselves. We are here for you Kismet.
I'm taking pregabalin. There is a no-name brand available that should be less expensive than Lyrica. At least it's available in Canada. It has been helping until now, but I keep needing to increase the dose.
You're really not taking that much med.I certainly am not advising you,but when my pain went severe,i added Xstrength Tylenol (3 sometimes) and doubled my Hydrocodone.Took extra Carbamazpine also.It didn't fix anything,but it got me through.Prayer and relaxation if possible can't be bad.Good luck..
Hi Kismet. I hope you are feeling better:) I know how hard it is to deal with sever pain and children. You deserve a round of applause! I am sending prayers you are well enough to enjoy your friends and family during the holidays!
Would love an update on how you are doing now-- I hope better!! I notice it has been almost three months since your original post. Here's to a painfree holiday!!