I saw my neurologist last Friday and the whole appointment went sideways when I had a hemi-facial spasm about a half hour after our discussion began. And let me say that the whole thing started off strangely because this is the neurologist who confirmed my ATN a year ago after MRI showed pathology, BUT, my doctor at the pain clinic sent me for another MRI in January because she is certain that I have GPN too and this report showed no pathology at all! So I have conflicting MRIs. My neurologist believes the second one could be a faulty reading but that now the neurosurgeon might not see me (I have been on his waiting list for new patients for a year and it is still an 18 month wait.).
In the meantime neurologist wants me to add Tripleptal to the 3,600 gabapentin. I am willing but dreading.
I had to travel quite a bit to get to Vancouver and travel, all the vibrations, light and noise, has brought on hemi- facial spasm a couple of times. So when this happened right on cue my neurologist whipped out her iPhone and recorded it and told me to record when they happen.
She took me into the examining room right away. Went out to check my chart and came back saying that since this pain began three years ago with an ear/ sinus infection she wanted to do a spinal tap and asked me to come in again next week. I couldn’t face all the travel again right away. I will go back over end of
I did have another terrible hemi- facial spasm Friday night after traveling back. I did record it and let it run its course. Scary to look at, scary to experience.
It has taken me days to settle down enough to write about.
My neuro doc injects Botox in my cheek and around my eye for spasms and it seems to help quite abit. I have a low dose of Klonopin that I can take twice a day. The dose is too low to help much, so I usually save some on days I'm not needing it and when I have a really bad flare-up of pain will take a bigger dose along with Gabapentin , Aleve, Benedryl, that's all I have...and just have to cry it out, use a heating pad tent over my face and wait until I feel drowsy enough to sleep, then the pain finally goes away.
Thanks for the response kg. So sorry this put you in tears. Neuro did talk about Botox but I needs to be referred to the movement disorder clinic to get them under the BC medical plan and that could take up to a year…
I have some Xanax, maybe that would help. Will ask GP about Klonopin.
Also thanks for idea of heat tent around face. Hope you don’t need it today:)
Bella
Glad you got to see the Neuro, sorry you struggled with the travel portion.
I had to have a Spinal tap years ago . The test itself is uncomfortable, but you’ll survive.
The days following you should lay flat to avoid the dreaded spinal headache. I did just that, watched movies, read books, and avoided any head pain.
I’m glad your Neuro saw your spasm, I find they are a bit more thorough when they can actually see things.
I hope things speed up for you, in terms of appointments and treatments, sending positive thoughts your way,
Mimi xx
Hi Mimi
Thanks for the hugs:). Also advice about lying flat after the spinal tap. It takes two ferries and a lot of driving for me to get to Vancouver, maybe I should try to arrange to stay there. Or I could take the seaplane, but still, subway, buses to negotiate…so I will plan something.
You are so right about the neuro seeing that spasm! This is the third time I’ve seen her. A year ago when I had my consultation after MRI I got on a plane 3 hours later to fly to Nova Scotia where my father was in organ failure, so mind was elsewhere and did not make best of that appointment.
Thanks for the positive thoughts.
How are you doing this week? Any speed up on your MVD?
XoKaren
Bellalarke, YES! I have V, VII & IX plus 6 herniated cervical disc. Yup good old atypical bilateral face pain with glossophyegeal. Horrific back tongue pain that feels like some crazed demon with a white hot ice pick attacking my tongue 24/7. left shoulder, left shoulder blade front chest burns with very strong muscle spasms. I Also have face spasm spells and seizures caused by brain tumor surgery 2 years ago.
It's been 3 years of hell to finally fine the right docs and finally have a diagnosis. It's hard enough to have to bear this horrible pain with no relieve. No relieve because too many docs don.t kown. It you go to a doc with an ailment not of his 'specialized' training small block of knowledge; he runs lots more test and then says it's somatoa/psy case. I could write a book.
Have a good pain management now (finally)! Yesterday had 2 injection on the left side of face for branch II & III plus 2 in my shoulder. 24 hr and my face has great pain relieve :).
Oh it’s good to hear that there is relief out there:)
Thanks for your reply and sharing the details. It’s odd that someone else’s misery could bring me such relief but when I just read all your symptoms, the shoulder blade, the chest burning, it was like yes! If you know what I mean, and I think you probably do. I also have cervical arthritis and some bulging and fusion and a bone spur or two but no tumour, gosh. Sorry to hear about that. I bet you could write a book!
You are definitely right about the “block of knowledge” thing. Mostly my experience has been being bumped along to the next person.
Nobody has called me a psych case yet but the first neurologist I went to thought I just needed “reassurance” and suggested cymbalta and tramadol. When that combo caused serotonin syndrome my GP (whom I’ve been seeing since 1999, and thankfully didn’t buy into his diagnosis. Continuity really matters in complicated cases!) sent me to another neurologist.
I asked the new one last week how many cases of TN she has treated and she took a moment before answering, “we’ll, when I was at the Mayo we had four and three were resolved by MVD; currently I’m treating two others”. So I am her seventh…and I have seen at least that many doctors and had at least that many big tests in three years. The first attack came 3 1/2 years ago and quickly became the daily reality.
I am going to become a grandmother soon and would like to really be able to be there for the little guy who is coming into my life. So it is good to hear success stories. Thanks
Just a follow-up; 5 days post cortico-steroid injection to my cervical spine and branch 2 & 3 in right side of my face. Blessed relieve of the atypical bilateral face pain.for 5 days. 1st 3 days was heaven as my face and tongue were totally numb. I thought that I had been handling the constant pain fairly positively. When the pain was gone I realized how much it had really effected my mental strength and loss of quality of life. Unfortunately the pain is slowing returning. The stabbing, white hot tongue pain is still gone Praise God.
GoAskAlice said:
Bellalarke, YES! I have V, VII & IX plus 6 herniated cervical disc. Yup good old atypical bilateral face pain with glossophyegeal. Horrific back tongue pain that feels like some crazed demon with a white hot ice pick attacking my tongue 24/7. left shoulder, left shoulder blade front chest burns with very strong muscle spasms. I Also have face spasm spells and seizures caused by brain tumor surgery 2 years ago.
It's been 3 years of hell to finally fine the right docs and finally have a diagnosis. It's hard enough to have to bear this horrible pain with no relieve. No relieve because too many docs don.t kown. It you go to a doc with an ailment not of his 'specialized' training small block of knowledge; he runs lots more test and then says it's somatoa/psy case. I could write a book.
Have a good pain management now (finally)! Yesterday had 2 injection on the left side of face for branch II & III plus 2 in my shoulder. 24 hr and my face has great pain relieve :).
Hi Alice, Days of relief are good because they remind us of what it was like “before”, and that builds some more strength, changes patterns, both physically and emotionally. Good to hear you got relief from that white hot stabbing tongue pain. I had some injections in my neck and head three years ago at a pain clinic that freed up my neck somewhat but I’m pretty sure it made TN worse. Tricky business. May your relief continue.