So sorry that you've been dealing with TN. Thanks for sharing all of the info your neuro shared with you about the various drugs and relapse info. I had some experience with TN in 2012 and 13 and know it can be a monster! I hope yours disappears as mine has.
Laura
I am so happy for you that the steroids with the meds are working. Good to know about the activity of lesions too.
My neuro also has an unorthodox view on certain things although his seems to relate to progression. He only considers a DMD ineffective if I have 2-3 major relapses in a 12-month period and only does an MRI in the event of a major relapse.
More hugs and prayers coming your way and I hope you have a lovely time on your trip next week!
Corrie
Had my 4th IVSM infusion yesterday, the nurse setting it at a much slower rate, because after the one on Monday I got a killer headache (quite distinct from TN pain). They don't know why that seems to work but it does, and it did.
All in all I'm doing a lot better. I do have little bits of breakthrough pain that is worrisome, as I fear a roaring return of the whole horror, but at least Tegretol and gabapentin keep that to a bearable level.
My neuro happened to be in the clinic yesterday (at Hopkins they usually see patients only one day a week, the rest of the time being reserved for research). It was just by chance that I saw him and mentioned I was going to the infusion center. Later he stopped in and we had a long chat, during which it occurred to him to order blood work for me. He also wants a brain MRI, w/wo contrast. Because of scheduling, this can be done only in about 2 weeks, and I was concerned that any lesion that is new now might be old by then. He insists that lesions enhance for 6 or 8 weeks, not the 30 to 40 days we've all heard.
He also brushes off a return or increase of old symptoms as being basically pseudoexacerbations, not relapses, in pretty much every case. This has had negative consequences for me and I'm sure for a lot of others in his practice. Last year he pretty much blew by a big relapse I had, though he did order IVSM. Later on, after extensive consultation elsewhere at Hopkins and at NIH, it was concluded that at least part of what I was experiencing was from a new MS thing, but I don't think my neuro has actually connected
those dots. I have them in reserve, though, should I need them.
Anyway, yesterday's conversation was largely hypothetical, in case the new MRI shows something sinister. At that point he would be concerned that Tec is not working for me, and possibly want to switch out. We talked at length about Tysabri, about JC virus titres (my status is unknown), and about Lemtrada. I brought the latter up because I had recently answered a post here in which that was mentioned, and I don't know much about it. My neuro's idea is that it's a very effective drug against rampant MS, but because of the way it kills blood cells, the patient is almost certain to be trading MS for another autoimmune disorder, unknown which one, a few years down the road.
We also briefly touched on Rituxan, which he regards favorably, though added that since it's off label for MS, prescribing it involves a big but winnable fight with insurance. He emphasized that once past the CRAB drugs, which are immunomodulators, we largely get into the realm of immunosuppressants, and then the big guns are actually chemo. It's not that I didn't know these things, but I liked the forceful way he put ,it together. He knows all the research data on Tysabri and all the rest, and rattled if off faster than I could take it in.
I didn't like this man when first we met last year, I have to admit, as I thought he was rather condescending, and he still has unorthodox ideas about relapses. But as we have gotten to know each other I guess he has decided that against all odds I do have a brain. And he's conscientious in responding to requests and messages. So all in all we've hit it off a lot better. I'm happy to say, though, that for most purposes I'm being transferred to the NP I used to see. She's fabulous, and everyone I talk to loves her. She left, though, to become one of the VPs of NMSS, a huge feather in her cap, but apparently she missed her clinical work, so she's now seeing patients either one day or a half day a week, while doing NMSS work otherwise. I'm really lucky to be one of those she sees, and she DOES know what a real relapse is.
This has been largely blather, and I commend anyone patient enough to have plowed through it. But I thought some might be interested at least in the part on newer infusions and their risks.
Really hoping to be well enough to go to Chicago next week for a few days, for a long-planned family event, I do think I'm gonna make it..
ess
Thinking of you............HUGS!!
Hi Ess,
Sorry to hear you're going through this. I have experienced TN
Pain in my ear, cheek, and jaw like a lightening strike of pain and its the take your breath away kind of pain. It doesn't last too long and usually a valium and some tramadol helps.
I have also had the kind of pain in my teeth that you speak of which is every bit as painful and lasts much longer, but I didn't know this could also be TN.
Again, I take valium and tramadol which I do get some relief from.
I don't have any issues with my teeth as far as my oral health goes.
I'm glad that you were able to get the solumedrol, and some relief as well.
Big HUGS.
Best regards, barb
I'm really sorry to hear that you have been struck down by TN. I've had bouts of TN for the past three years now, left side worse than right and different parts of the face so believe me, I can relate.
Tegretol works for a lot of people from the pain perspective but unfortunately not from the side effect one. Although I didn't have the balance issues with it, I just wanted to sleep 24/7 and my QOL was zilch by the time I got to 1000 mg/day.
If the IVSM doesn't knock it on the head you may need to look at some of the anti-convulsants or tricyclics, even combining one of each.
When I went off Tegretol I went on to Gabapentin and while it does work taking it 4x per day, it isn't near as effective as the Tegretol. The side effect profile is much more bearable. I have to temporarily add in a tricyclic if I'm having a really bad bout though.
Fingers crossed the steroids work.
Best wishes
Poppy
Thanks once more to my friends here for your caring comments. Had my infusion for today--now two more and it's wait and see.
ess
Whuf! So sorry that you're having TN.
I've had very mild problems with it, and my solution was to rub lidocaine lotion all over the area.
TN is the Worst. I have never had it but have had many friends with it. I would not wish it on my first oncologist. I am so sorry you have to go through it at all. I am thinking about you.
Alex
So sorry to hear it's still going at you with a vengeance. I'm glad they seem to have grasped the seriousness of what you're dealing with by making higher doses and steroids available to you. I know we don't bring in the big guns lightly, but what you've been going through more than qualifies for the biggest of guns.
Thank you for updating us. I was wondering how you were doing. Secretly hoping your absence had to do with an exotic vacation, I was pretty sure it actually meant things were still tough. Hang in there!
Oh ess that sounds like a tremendous ordeal. I truly hope the worst is over and that the IV steroids do the trick this time.
Many gentle hugs,
Corrie
Today makes 2 weeks of TN. I wouldn't wish it on anyone.
For me, Tegretol is a mixed blessing. My doctor increased my dosage, as 200mg twice a day wasn't doing diddly, even with various amounts of gabapentin added. But at 300, the side effects were crazy. I totally lost my balance and was staggering wildly. Had to go outside with my dog, and can just imagine what anyone looking would have concluded. In the shower I had to hold on to the walls for dear life.
So back to 200mg and on to IV steroids, which didn't start until this past Wednesday. Got in Wednesday and Thursday, but since Friday was the 4th of July holiday, that was it for the week. Now have Mon-Weds to do.
I'm glad to say that things are better. Still have some pain but it's considerably less. I don't know whether these next 3 infusions will knock it our completely (I hope I hope), or whether on the other hand, it will all come roaring back afterwards. I've had 2 previous rounds of IV steroids, 2014 and 2013, neither of which was particularly effective, but I'm hoping that this one will be different because it was started early in the flare.
Wish me luck, folks..I've been through the wringer with this.
ess
Oh Cr@p that is so not what you need, only thing i can think of is trying to knock your self out, a sleeping pill might give you a couple of hours, sleeping is the only true relief i get when it's happening, sorry that's all i've got, though some people say alternating hot and ice packs helps 'a bit' if you can stand the touch.
HUGS HUGS HUGS HUGS.........JJ
Oh ess, I hope whoever is on call can help.
Good luck,
Corrie
Contacted my neuro, who said I had to wait for the Tegretol to kick in. Now it's the weekend and my pain is close to a 10 24/7. I will call the neuro on duty, who will be some resident not familiar with TN, but I have no other choice. At least I won't be asking for a narcotic, since they don't work for TN anyway.
That s_cks Ess and I'm sorry you are one of the unlucky ones to have what I've heard is torturous. As far as the Tegretol goes I believe it does take time to work which is probably not what you wanted to hear. :(
Cyber hugs coming your way.
Karry.
ESS.. I have nothing to offer you other then I'm sorry you are in pain. I pray it'll let up soon.
Omg you poor thing! I can't imagine the paiin you muuust be in! I am thinking of uyou and wishing it will be over soon! Big hugs
Barb
There's nothing that can fix it, it's not a grinding teeth/ jaw clenching thing for me, it's actually another genetic hiccup passed down through my dad. My younger brother, my youngest and I all have 'some' hypermobile joints, Joint hypermobility syndrome which is more commonly known as being double jointed.
We're all different mind you, It's very mild in our family, basically unless a joint pops out of it's socket it's never actually caused any of us any major problems. My brother has the overly pronounced flex in his elbows, son's is shoulder blades, elbows and fingers, and mine is jaw, wrists, fingers/thumbs. I've always been flexible without trying and i've assumed i'm still as flexible as i am in part because of the hypermobility and all the years of ballet and gymnastics training I did throughout my childhood.
One bad fall not that long ago, my body ached in places i didn't know i had but I didn't realise my jaw was out of alignment again until going on two weeks later, lol only worked it out after i face planted whilst wakeboarding, I hit the water so hard I lost all vision for a few minutes but it was an instant cure for my jaw ache though and so worth it :D
TN is a different devil, it stops you in your tracks it's so painful i think you only start breathing again when it just as suddenly stops, it always happen's for a few minutes at a time and you can't know how long until the next lightning strike is going to hit you for six. I have actually unhinged my jaw when it's hit, that has triggered the TMJ more than once but i definitely know which type of pain i'd rather be dealing with out of the two.
Again hugs, it's a beast and a half and i truly hope you get some relief soon!
Thinking of you.........JJ
It is going to take some time for the Tegretol to work. I have never had TN but have been on Tegretol. I hope it works. If it does not do not hesitate to ask for something else. I am sorry.
Alex
More thanks for comments and suggestions. I've done some reading myself, to learn about the different types of TN. It seems a lot of what I have is the second, mixed with either the first or a very extreme version of the second. Apparently variations like this are possible.
Right now, at 5 am, a lower right molar aches very badly, and I can see why people go the dental route, since it does seem like a tooth problem. But the pain is not the full throttle kind I also get, the kind that brings me to my knees. I would hardly call that mild.
JJ, it does sound as if you have both TMJ problems and TN. Since the TMJ stuff is usually caused by grinding teeth/clenching jaw at night, maybe your dentist could make you a mouth guard to use overnight. It's a thought, anyway.
Meanwhile my Tegretol seems to be doing zilch.
ess
I'm so sorry your experiencing TN.......HUGS!
I've been told I have TN and or TMJ by different types of doctors and dentists over the years, lots of disagreements and changing of which but i've also been told that i actually have the typical pattern of both.
The TMJ goes way back to a childhood surgery and jaw misalignment, every surgery, throat check ups, dental visit etc. My TMJ symptoms are classic, basically anything that opens the jaw wide is a trigger, my jaw opening is smaller than it should be, bite is off, jaw pops out of alignment, jaw continually aches from the hinge, jaw movement is stiffer etc
The TN was never pinned down to a known origin, just another of my idiopathic dx collection, TN from my experience is definitely different to TMJ! TN pain is incompatible, sharp lightning strikes, each hit doesn't last long but it does come in wave after wave of indescribable nerve pain, which stops when the hell it chooses too.
The left side of my face has the TN (mandibular V3) nerve pain, but weirdly it's the right side of my face that has the odd patches of paresthesia which I hadn't realised actually runs along the maxillary (V2) nerve
Cold wind is one of my TN triggers but the first time it was triggered by air travel was an unexpected shocker, it's still vividly in my mind being stuck between two people on a 6+ hour flight and in so much pain i wanted to rip my face off. I've never had a good time with pain meds, can't even remember what i've had prescribed over the years. I do recall the first TN one i tried did help the pain 'a lot' but the side effects always makes things worse, the pain knocks me out which truthfully i'd rather when all is said and done...
TN Information:
This is a really good book on TN and it goes through differentials, meds, myths etc and well worth looking at...
https://books.google.com.au/books?id=vAbU8rfb-OoC&pg=PA82&lpg=PA82&dq=distinguish+TN+from+TMJ&source=bl&ots=lI0RXl2iGz&sig=QMd0DkmDIUHaCuBBpXML3b8YzCo&hl=en&sa=X&ei=NmCLVaG-Kua5mwWkiJaACg&ved=0CDEQ6AEwAzgK#v=onepage&q=distinguish%20TN%20from%20TMJ&f=false
This is a really good teaching site with other very good anatomy articles, sometimes technical but easy to follow..
http://teachmeanatomy.info/head/cranial-nerves/trigeminal-nerve/
This page lists the TN types, basic info, images but it has other links on the site that are worth looking at...
http://www.umanitoba.ca/cranial_nerves/trigeminal_neuralgia/manuscript/types.html
[oops i have others but can't get them up to get the links for you, sorry]
Hope it helps you a little bit
HUGS.........JJ
From what you described it sounds like a mild bout of TN to me, at least from my experience. I've had it twice and each time the entire left side of my face from cheek bone to lower jaw and every tooth (upper and lower) including the missing teeth hurt at a 10 out of 10 level all at the same time with no let up for a week. So maybe your med is working?
The only way I survived the TN was that I took some hydrocodone even though it really didn't touch the pain it did knock me out for 6 hours at a time. I slept 24/7 for the week except to eat and bathroom visits. I have heard someone say TN is also known as the suicide symptom and from my experience I would believe it.