Just thought I would share this with you, just in case the information is useful to any of you.
I do have other health problems apart from my TGN & because of this I was given a full Lidocaine infusion two weeks ago. The main reason was for my spinal injuries & Fibromyalgia but the consultant did jokingly say "you never know, it might help with your TGN"
This most recent flare-up has been the longest lasting & most severe I have ever experienced but over the last two weeks I have seen a steady improvement in my facial pain levels. It has not settled it completely but it has dulled it considerably! :-)
Just thought I would share this in case it helps anyone else!!
I had a few nose surgeries (septoplasty- one doc though my pain was a contact headache, but really he just wanted to cut as it was nothing like a contact headache I later learned…)and maybe 3-4 days my pain was relieved from the lidocaine they used in the anesthesia. Gave me false hope the surgery worked.
Kind of wish Lidocane came in pill form, or I can have my own IV to shoot up every 3 days!
I know here at the Cleveland Clinic they have a program where you do a few weeks of infusion, mainly steroids and Lidocaine. Program is used for headaches though, but maybe I will ask them about it.
I've used lidocaine on the outside so many times --- I would probably try this before a second MVD if ever needed - I'll put this in my "Just in case" TN file!
I had a lidocaine infusion which really helped, so they put me on Mexiletine which I believe is the sister to drug to lidocaine. If lidocaine infusions helps you, Mexiletine might be worth trying.
I had a lidocaine infusion which really helped, so they put me on Mexiletine which I believe is the sister to drug to lidocaine. If lidocaine infusions helps you, Mexiletine might be worth trying.
So far, so good...severity & frequency of the spasms is still at a reduced rate compared to before the Lidocaine infusion. It's been just over 2 months now & I am still struggling with my TGN, but I have been coping a lot better lately, so who knows...this might be worth a try for some of you! :-)
My neuro prescribed Mexilitine, too. I have been using it for several months now. My neuro said it is basically an internal lidocaine type drug. It started out working with my other meds to show a little improvement (1/2-1 point on the pain scale). So he raised the dose because it just wasn't lasting and increased the frequency. Unfortunately I started getting chest pains when I went to the higher level so we are trying another med cocktail to see if we can boost the pain relief to get me to some tolerable level. He did say however, that I cannot use the topical patches or creams because it would conflict with the Mexilitine.
it's very straightforward really, it is administered in the same manner as a normal "drip" over the period of 30 minutes...only difference is that, as it is a form of anaesthetic, it has to be done in theatre whilst you are being constantly monitored, to ensure prompt attention if you have any kind of adverse reaction.
I was wheeled in on the bed, the infusion was administered while I lay there having a natter with the staff & I was then monitored on the ward for about 2 hours & then I was able to go home & that was it.
I'm sorry to hear it didn't work for you Dana...I guess we're all in the same "trial & error" boat when it comes to finding the med cocktail that works. Best of luck with the next trial. :-)
Dee
Dana Nelson McCullah said:
My neuro prescribed Mexilitine, too. I have been using it for several months now. My neuro said it is basically an internal lidocaine type drug. It started out working with my other meds to show a little improvement (1/2-1 point on the pain scale). So he raised the dose because it just wasn't lasting and increased the frequency. Unfortunately I started getting chest pains when I went to the higher level so we are trying another med cocktail to see if we can boost the pain relief to get me to some tolerable level. He did say however, that I cannot use the topical patches or creams because it would conflict with the Mexilitine.
unfortunately it is classed as an "emergency intervention" procedure as it can only be done a few times during intense flare-ups of whatever painful condition it's being used to treat. In my case, it was given for an old spinal injury & Fibromyalgia, but the consultant was very aware of TGN & even joked that if nothing else, it might help the TGN.
It supposedly only works in some patients, giving an approximate 30% reduction in pain levels the first time & can only be done roughly 3 times over a couple of years. If the infusion does have to be repeated, apparently the level of pain relief is lowered each time. I can't say I've noticed any real big change with my other pain levels, but it has definitely reduced the number of spasms as well as having taken some of the sharp edge off my facial pain. :-)
That's all that I can remember Mimi, as I was so nervous about whether or not it would help with my TGN that I was a bit of a wreck, so I hope it helps. :-)
Thanks for the explanation Dee, so good to learn from each other.
I’m doing well, I’m heading into 11 weeks post mvd, still no TN pain, which is amazing …
I shouldnt complain, BUT I’m very frustrated with the lack of energy I have.
Like you my pain caused me to be a shut in for a year and a half, now that the pain isn’t the focus, I’m anxious to get back to life and it’s not happening.
I’m worried the pain will return before I get a chance to enjoy life again…so a little post traumatic stress I think.
Doctors and everyone else keep telling me, " you’ve had brain surgery, it takes time."
I know…it’s a huge blessing to be off two meds and feel a clearer mind, just on 1200mg Tegretol for right side TN, hoping to cut down a few more pills starting in July.
All the emotional issues are at the surface too, slowly dealing with that too.
Compared to pre mvd I’m doing extremely well. Thanks for asking,
(( hugs )) Mimi
glad to hear your TN pain is absent, that must be such a relief, I'm so happy for you. :-)
As the doctors say, your body has just been through a major trauma, you do need to be patient, but I can totally understand your fear about the pain returning before you get a chance to "live life again"...after living through the hell that we do, I think that's totally normal & understandable, I would feel exactly the same, as I'm sure many of us would.
As you say too though, I agree with the PTSD thing and no-one in their right mind could survive TN without a little emotional baggage :-), that too will hopefully start to fade. Just keep your chin up & take it as it comes at you! :-)
I've had 17 months of reduction in the pain levels so I'm feeling quite lucky as prior to the infusion I was wracked with pain constantly. I'm glad to hear that it worked for you too.