I’ve been lurking for a couple of weeks and decided its time to come out lol!
Ok, so, I’m 44 almost 18 months ago I had my first electric shock of TN. Long story short, thought it was dental so for the last 16 months I have had $7 grand in uneccesary dental work and yep, pain is still there.
Diagnosed by a very specialized oral surgeon. Classic TN of the V2 branch. Due to past health issue’s, I’m extremely sensitive to pharmaceutical drugs and chemicals. I’ve been getting basically a fancy steroid injection under my top lip into the hard area about the roots of my teeth. These injection were a miracle. Not 100% better but less frequency and most definitely less intense attacks.
Tried tegratol for one week and had terrible reactions to it. Took a whole week to get that out of my system. So, I’ve had 5 or so injections roughly two weeks apart. This last injection barely worked at all and I moved my next appt up.
Anyone else have these types of injections? Seems like when they do work, they wear off in about 10-12 days. I’ve also developed a constant ache in my check area-not sure if its the TN progressing or from the injections?
He wanted me to give the injections two more months and consume cannabis. Yes, I live in a legal state and was already a legal patient. I just aquired some very high CBD cannabis and just made a coconut extraction with it. Coconut is good for seizures. CBD is what they give to the kids with seizures which is why it should help with the TN. I already consumed cannabis daily but with levels of typically less than 1% CBD. I just started the high CBD protocol yesterday so will keep people posted on that if there is interest-I know its a touchy subject.
It seems from my research and at my age that I’m headed for MVD sooner rather then later. My husband just started a new job, its literally his second week and I work from home. Will I need someone with me at the house constantly after the surgery and if so, for how long? Any idea how long I will have to give up exercise, I go to jazzercise almost daily, its the onlly thing that keeps me sane!
I have systemic sarcoidosis, at one point I was on 22 medications at one time. I was getting Remicade infusions every 4 weeks and no one monitored the level. Ended up hospitalized for almost 3 weeks-the level of remicade in my system was three time the therapeutic dose. I was so toxic, you could smell it coming out of my pores. Since then, I react very badly to most every medication. I agreed to try the tegratol as I know options are limited and by the second day I was so weak, I couldn’t leave the house. Continued for a full week and seriously thought I was going to die, it was three days before I stopped throwing up and a full week before I could walk down stairs.
I wish I could toleraste the meds but my system just can’t anymore.
Sometimes intense exercise can trigger shocks...you'll just have to play it by ear and see how your body reacts. I mostly have type 2, But if I exercise too intensely or try to jog...I will get small shocks in my face...So when I exercise I stick with fast walking. Hang in there. It may take awhile to find a regimen that works well for you, but it can be done....Good luck to you. Min
Hi Harley - I was also 44 when I was diagnosed with classic Type 1 TN. I had my MVD 9 months after my diagnosis, which was fortunately just 4 days after my symptoms started. I'm now at 19 months out from my MVD and I am 100% pain free and med free. I am also a fitness instructor (I teach spin classes) so I think I can give you some advice for sure on the fitness class end. I decided to have my MVD just a few months into my diagnosis but had to find the surgeon. I had consultations with three neurosurgeons and decided to travel out of town to the third, Dr. Ken Casey (he co-authored the book "Striking Back" for TN patients). He was the only one that clearly saw my compression.
I had to take off from my job teaching spin classes for 8 weeks after my surgery although I was taking a few classes at the 6 week mark. Because I was in great shape before, as it seems you are too, I was able to recover much more quickly than I had anticipated, although I did ease back into everything. I began walking (slowly) on a treadmill 4 days after surgery and gradually built up. My surgeon gave me his blessing on that as long as I eased into it and stopped if it hurt my head more, which it never did. I would strongly advise you to start now on an anti-inflammatory diet anticipating surgery. I did that three months out and I know that helped me tremendously. I felt pretty good a few days after surgery and stopped all surgery meds just a week or so out. Also, because of the diet, which is also high-fiber, I never had to take anything for constipation, etc. I did have meals coming from friends and family for a good 8 weeks but made small meals for my self and froze them in advance so I could stick to an anti-inflammatory diet (essentially no meat, little to no dairy, lots of fatty fish & veggies/fruit).
Having my MVD was one of the very best decisions I ever made (maybe the best). Surgery success is much better for the classical type of TN and also if you put yourself in the hands of a neurosurgeon who is a TN expert.
Please message me if you have any other questions. God bless!
I can’t exercise. It causes the blood pressure to raise and the artery to pound, thus the shocks to start and also the atypical pain to start as well (i have both types).
I get the toxicity, but there is some very, very mixed results with MJ as well. I wish it were not so. I was hoping given some of the strides being made in CO that it would translate to TN, but neuropathy is a funny thing. What I have read the most is not that it stops or helps the pain, but that it does the same thing a strong opiate does— makes you kind of dingy and not care as much, even given the 1% CBD.
Thank you all for the great replies. I’ve been jazzercissing for more then 2 years now which is pretty amazing when in 2007 I could barely walk. The bouncing doesn’t seem to trigger the tn as long as I keep my teeth apart. What hurts is when I wipe the sweat from my face or blow my nose lol, even drinking from a water bottle.
They have a jazzercise light class, I’ve never been but I see them prepping and it looks like a lot of older (no offense) people and it appears they sit in chairs for a lot of it so I was thinking that might be a good way to ease into it.
I see Dr Casey is in Trenton, thats probably an hour and half or so away from me-sounds like I should just start with him when the time comes. I’m going in today for another “steroid injection” and I really hope this one works as the last one did not and the pain has been pretty bad.
I’m not actually as “high” from the cannabis extraction as I thought I would be. I have a decent tolerence anyways and can function pretty well as the cannabis relieves my constant nausea. I think the really high CBD is counteracting the feeling of the THC. I’m more groggy and a little spacey but nothing overly serious.
Apparently the c annabis with the high CBD level is supposed to work like the tegratol. High CBD oil is what they give to the little kids who have terrible seizures and nothing else works for them. It is also an anti-inflammatory as well as provides some pain relief for the TN.
I am on a gluten free diet per the docs advice that is treating the TN. He also has me on a handful of supplements, a really good probiotic, mucogeson or something like that for my colon (I have a LOT of digestive issue’s) a vit B, a type of fish oil and something for the adrenal glands because mine have been abused by steroids over the years of dealing with the sarcoidosis. I don’t eat processed foods and as llittle preservatives as possible. After topping out over 220 from steroids and not being able to move, I’m running a pretty healthy 145. I struggle a lot with depression and the jazzercise helps more then anything else lol.
Off to get ready for yet another doctors appt. Be well.
Sounds like you are handling it all well, Harley, considering your situation. Yes - definitely make an appt to see Dr. Casey. He will spend a lot of time with you and I know you will be impressed. He is a remarkable neurosurgeon and has much better stats on MVD surgery than the other surgeons I consulted with, including much lower chances of complications. He has performed thousands of MVD surgeries and trained and then partnered with Dr. Peter Janetta, the surgeon who invented the MVD surgery. Please do ready Casey's book "Striking Back" before you visit him, if you have not already.
On the exercise, if it is working for you, I would definitely keep it up. I continued teaching my spin classes in my 9 months of pain and on those loopy meds. It was challenging, especially as my pain would breakthrough and flare up sometimes in the first 5 minutes or so of exercising but as I continued, it actually got better and with the endorphins that the workout gave me, they actually gave my meds an extra little boost that kept breakthrough pain at bay for a few hours afterwards (my neurologist told me that this was why). Also, as you know and stated, the workouts keep your happy. I always say that exercise probably benefits my mental state far more than my physical state. We definitely need that too when we are battling this awful TN. And again, the jazzercise routines will keep your body fit and ready for that big surgery.